My Journey

December 23, 2024

Hello Team Z! I know that so many of you have been praying for me, sending good vibes, and thinking about me more than usual as I've been undergoing proton therapy. With that in mind, I wanted to provide a little update and ask for (even) more prayers.


Last week I completed proton therapy treatments 7-11 (out of 15 total planned treatments). Some of you have already heard either from me or the grape vine... these treatments have been extremely challenging both mentally and physically. Each treatment consists of me lying completely still on a metal table with my arms over my head for a full hour. The doctor and nurses did tell me from my first day that my treatment plan was quite "robust"; most patients are only on the machine for 20-30 minutes max. I did not anticipate at the time, though, what lying completely still in this position for that long would do to my body. Because of the positioning, my shoulders have been going through it! I've tried numerous different drug combinations to help relieve the pain, but nothing has helped the throbbing in my shoulders once I get around the 40 minute mark. The treatments have also made me extremely fatigued and have mysteriously caused my breathing to be even more labored than my baseline. The radiation oncology (proton therapy is a form of radiation) team has ensured me that it would be extremely unlikely that the proton therapy is affecting my breathing already; it takes months for the effects to show their face. However, the timing is pretty wild if it's truly not connected (in my opinion). I have been forced to remain pretty idle at home to allow my lungs a chance to catch up. Anytime I get up at all, even just to go to the bathroom, my oxygen saturation levels drop significantly.


In addition to difficulty breathing, last week I also had some complications with my heart that unfortunately sent me to the emergency room. The ER docs informed me immediately upon arrival that I was experiencing supraventricular tachycardia (SVT), which is a condition that causes the heart to beat abnormally fast due to an electrical issue in the upper chambers of the heart. My heart rate was 228bpm, so we knew something wasn't right! (Yikes!) I stayed in the hospital one night to monitor my heart and try to determine why my heart went into SVT. The doctors' only explanation for what might have caused the SVT was the stress the radiation/proton therapy is causing my body. Again, the radiation doctors do not believe that the radiation is connected to my heart complications. Since leaving the hospital, I continue to have an abnormally elevated heart rate, but have been able to keep it within safe levels with the use of some medication.


Although I was supposed to have my 12th proton therapy treatment today, my doctors and I decided to take a break until after Christmas. I will resume treatment on Thursday, 12/26, IF I'm able to get my oxygen levels to a more stable place. Anytime your oxygen saturation drops below 87% it is dangerous for your body/organs, which rely on the circulation of oxygen. I'm experiencing this kind of desaturation pretty much anytime I move to do anything. To combat this, my doctors have reinitiated a high dose steroid along with a steroid inhaler. They are not sure that this will do anything; a steroid is intended to relieve inflammation and right now there is no evidence of inflammation in my lungs. However, we are hopeful!!  


The past few weeks have been some of the most challenging in my life. I've been living in Royal Oak away from home, I've not been feeling/breathing good enough to even move about the house freely, and to top it off... I have radiation burn on my esophagus, which has made eating extremely difficult. All this to say, I need your prayers. With all that's happening in my body, I know I don't have to explain why my family and I are scared and frustrated and disappointed. Please pray that having this break from proton therapy will allow my body to get back to a more stable place so that I can finish up my last three treatments. Pray for my poor heart, which is working so hard to keep oxygen flowing through my body, all while being significantly squished by a tumor in my lung. Pray for my shoulders that have been so sore since starting the proton therapy treatment. Pray for the mental health of my family and me, as we endure another "lowest point" in my cancer journey. As we approach Christmas, I covet your prayers over the time I have with my family. Pray that, despite these setbacks, we are able to make sweet memories together and live in the moment. 


With love and gratitude, 


Sierra

December 3, 2024

Guess what fam?! I finally got on the proton therapy schedule! And I officially start tomorrow!

Today I had a “dry run” on the machine, which just ensures everything is lined up perfectly and ready to start tomorrow. My treatment plan is “robust” (according to the nurse), so I will be on the machine for about an hour every day for 15 treatments/days. They are targeting quite a few spots in my lungs; both the spots by my heart and the spot that was found to be causing shunting according to my angiogram. We’re happy that they’re taking an aggressive approach.

Since the treatment is in Royal Oak, MI, my mom and I will be spending the weeks here on the East side of the state, and then traveling back home for the weekends. We will skip treatments on Christmas Eve and Day, so when all said and done, I’ll be completing my last treatment on December 27th.

Please pray your hearts out that this treatment works miracles in my body!!! We’re hopeful that this novel approach will help my breathing and help my lung nodules remain stable. I’m fortunate to have the opportunity to try proton therapy, and even more fortunate that it’s in Michigan!

With love and gratitude, 

Sierra

November 30, 2024

Hi Team Z and Happy Thanksgiving!! Here’s a quick update on what I’ve got going on right now, and a few things that we’ve tried over the past few months that have been unsuccessful:

- I was referred to infectious disease a few weeks ago. They initiated a consult by giving me a Covid test. Since there was no trace of Covid remaining in my system, they did not see any point in investigating further. However, they did recommend trying an oncologic dose of steroids to flush out any lingering infection or mucus that may be clogging my already narrow airways.

- I’m officially ready to be scheduled for proton therapy! I had a simulation a few weeks ago, just waiting for my turn for the machine, which is in high demand, and for insurance to get sorted out.

- I had a pulmonary angiogram on Wednesday. They were not able to find anything fixable in my lungs, but did find which tumor in my lungs is causing the majority of the shunting. We’re hoping we can target that tumor with proton therapy, but don’t know yet.

- I had my first set of scans to monitor the success of the cabozantinib (oral chemo). So far, so good! I had mostly stable disease with very minimal growth in some lung nodules. No new evidence of disease!

- I remain on 5-liters of oxygen 24/7 with no real relief of my shortness of breath. We’re making the best of this and still try to keep up my quality of life as much as possible.

Happy Thanksgiving, Team Z!! I’m thankful for all of you who’ve made this (almost) 4 year journey with cancer more bearable. 

With love and gratitude, 

Sierra 

October 16, 2024

 

Hello Team Z! Have I mentioned lately how AMAZING, SUPPORTIVE, and LOVING you all are? As most of you know, the past few months have been some of the hardest my family has had to navigate over my entire 3.5 years with cancer. I’ve been in and out of the Emergency Room, I’ve seen countless doctors, and I’ve had numerous scans. All of this, and the only thing I have to show for it is 3 different oxygen machines and a wheelchair. Although these months have been extremely trying and discouraging, one thing that remains is that my people show up when the going gets tough. I’m so thankful for the prayers, the meals, the cards, the texts, all of it. I can’t tell you how much it means to me to know how many people are in my corner praying fervently and willing to step in to help at the drop of a hat. We are so blessed in that regard.

 

I’m writing today from the Houston airport on our way home from a 10-day stay. Over the past 10 days, I saw a cardiologist, pulmonologist, had two phone conferences with my sarcoma oncologist, and had a cardiac MRI. Unfortunately, after all that, I don’t have great news to share. In my last update, you might remember that the cardiology and pulmonology doctors in Grand Rapids were unsure whether my shortness of breath was due to a PFO (hole in the heart) or a PAVM (hole in the lung). The cardiac MRI determined I do not have a PFO. The cardiologist was very happy to tell me this news, and rightfully so… my heart is healthy despite being squished! However, we were bummed to hear this because a PFO could have been fixed via surgery. A pulmonary shunt of some kind, including a PAVM, cannot be fixed. So, with the news of the MRI results, cardiology passed me off to pulmonology, as we can now confirm that whatever is happening is definitely a pulmonary issue. The pulmonology team at MD Anderson took (some) time to look over my most recent chest CT scan and confirmed my lung metastases are stable. However, they don’t see anything else that might be causing my newly worsened shortness of breath other than the sheer amount of disease present in both lungs. This was extremely discouraging (and confusing), because my symptoms have very noticeably gotten worse after I got COVID and still seem to be worsening; I went from thriving on normal room air to now requiring 5+ liters (the max you can get at home) of oxygen in order to complete basic daily tasks. If the burden of disease in my lungs is truly what is causing this, there is nothing to be done.

 

In addition to this hard news, I’ve also been officially removed from my clinical trial due to my reliance on oxygen. They no longer consider me a safe candidate for the trial. Because it’s essential that I remain on treatment of some kind, my sarcoma doctor has prescribed an oral chemotherapy that I’ve never done before, called Cabozantinib. Some people have questioned why I’ve never tried this chemo before. The answer is because clinical trials seemed like a better, more sustainable option at the time. Now that clinical trials are no longer in the cards, this is the best we can do. This chemo is fairly tolerable, the worst side effect are diarrhea and hand/foot sores. I shouldn’t lose my hair on this one, as it only happens very rarely (although we all know I tend to live in the “rare” space :\ ). I will start this new drug today, and will do bloodwork, doctor check-ins, and scans at home with my local oncologist. I haven’t seen him in a while. I’m sure he will be THRILLED to see this *rare* girly back on his case load HA!

 

If you know me and my fierce family, you know that we are not taking my newest diagnosis/prognosis lightly or without some pushback. We’re looking into every possible avenue that might produce even the slightest relief to my shortness of breath. I plan to connect with the pulmonologist in Grand Rapids again, who seemed to have more creative ideas about my case than the doc in Houston. I also plan to keep my appointment with the structural heart team in Grand Rapids, even though we know this is no longer a “heart” issue. The nature of pulmonary shunting, if that’s what’s going on, tends to have cardio/thoracic overlap, which the structural heart team specializes in. Speaking of pulmonary shunting… what is that anyway?? I will do my best to explain it, although it’s a little confusing to my non-medically trained brain. A pulmonary shunt occurs when something is blocking the path that de-oxygenated blood going through the lung would normally take to get re-oxygenated before carrying that oxygen through the body. So, the blood that is going through my lungs to be oxygenated is being blocked and re-routes itself back into my body as is, never re-oxygenating. This could potentially be happening in more than one place in my lungs, as there are many masses that could be causing this shunting to happen. There is a specific test that can be done to determine where the shunting is happening. Even if this test is done; however, there still might be nothing we can do about it. We cannot surgically remove nodules because it would do more harm than good to my lungs; most of my lung space has already been radiated, so that’s off the table; and chemo doesn’t typically shrink osteosarcoma. So, my doctors have to decide if this test is worth doing. It’s not an easy test, as it is invasive and would require anesthesia. With my oxygen levels where they are, anesthesia is a risk.

 

With all this being said, we leave Houston today a little somber, with no more answers than when we arrived. The only advice I got from the specialized teams here was to start accepting this as my new normal. My sarcoma oncologist, who is the best, has assured us that he’s on our team and will continue to advocate for me in conversations with those specialized teams. He is not fully convinced yet that this really is just the burden of my disease, and we hold onto that. However, whatever storm COVID stirred up in my body might truly not be reversible. We don’t want to accept this, but at some point, we will have to.

 

We would LOVE if you would keep us in your prayers as we process and navigate this “new normal” and as we grieve the loss of my “old normal”. Old is relative, of course, because even the “normal” I was experiencing before all of this was definitely not my pre-cancer normal. If you can imagine the feeling of being homesick, that’s the feeling I feel all the time. I’m not missing my home, though, I’m missing my old body. Here are some ways you can pray:

 

-       Pray for my new team of caregivers, the magnificent Josh (husband) and Vonda (mom). They have had to step up in new ways, as I now require (pretty much) 24/7 assistance

-       Pray for my mental health, which is maybe harder to mend than my physical health. My mind is still so sound and curious and active. I want to do the things I used to be able to do, and it’s hard to be so limited.

-       Pray for my physical health, that I might be COMPLETELY healed by Him who can do more than we could ever imagine.

-       Pray for my siblings, Sydney and Vaughn, who navigate these hard times away from home and on their own.

-       Pray for my family and closest friends, who have to watch me struggle every day, feeling completely helpless.


We are so incredibly thankful for all the ways Team Z has shown up for me. Thank you, from the bottom of our hearts. 


With love and gratitude, 


Sierra 

September 17, 2024

Hello again, Team Z! I have to start by saying THANK YOU for all the fervent prayers I've received over the past few days. I can't even tell you how much it means to my family and me to have so many people praying over my healing; it just truly means the world to us. Since I posted last (on social media and below), I have some additional updates to share and ways you can continue to pray for me...


On September 12th, I posted about my increased shortness of breath and starting at home oxygen. The day after I shared this update, I went to the Emergency Room in Grand Rapids with still worsening shortness of breath. This is actually the third time I'd gone to the ER in three weeks; since getting COVID I had been going almost weekly. This time, however, my symptoms were the worst they had been. After doing something as simple as going to the bathroom, my heart rate was racing to 140bpm and my saturated oxygen levels (O2) were dropping to 87% (even while wearing the prescribed oxygen). Additionally, I had received the report from my echocardiogram, and I knew just from reading it that things weren't quite right. 


In the ER, the doctor ran some tests and had a cardiologist look over my echocardiogram. We learned that my echo showed that I have a patent foramen ovale (PFO), which is a small opening in the heart that allows blood to flow between the left and right upper chambers... essentially it's a hole in your heart. About 25% of people are born with a PFO... sometimes they cause problems and are treated, and other times people never even know they have them. Weirdly, though, I've had many echocardiograms in the past and a PFO was never discovered before. This was concerning because it could mean that my lung nodules caused the hole. However, the cardiologist in the ER was pretty positive it was an incidental finding, meaning it's always been there, it was just never detected before. We were very happy to hear that, but also felt like we were again left without any answers... what is causing me to suddenly be so short of breath??


Prior to this ER visit, all the ER doctors I'd seen blamed my shortness of breath on my numerous lung nodules. This was extremely frustrating because my CT scans show little to no change to my lung nodules, so how could they be the cause of the sudden change? Fortunately, the ER doctor this time did not brush things off by saying "it's just your cancer" like the others had and decided to admit me into Butterworth for further testing and observation. He admitted that there's clearly something going on and it's something I will need a team of doctors to discuss. With that, I was finally roomed in the hospital at 4:00am on Saturday morning. 


Unfortunately, the team of doctors that I needed to work on my case are quite specialized and do not work on the weekend. So, for the entire weekend I did a lot of waiting to see doctors! I was, however, able to touch base with a pulmonologist pretty quickly. After looking at my recent scans, she confirmed that there was little, if any, change to my lung nodules that would cause me to suddenly have worsening symptoms (thank you very much, that's what I've been trying to tell everyone!). I also received around the clock breathing treatments, which really opened up my airways and allowed me to take deeper breaths. Additionally, I've been taking steroids since Wednesday, which we're hoping will relieve any inflammation in my lungs. With those things combined, I was actually starting to breath a little more easily by Sunday (although I was still in need of oxygen)! 


Monday afternoon (9/16), I was finally able to meet with the structural heart doctor. After looking closely at my echocardiogram, he is suggesting that although I do have a PFO, it is not the cause of my sudden onset shortness of breath and has probably always been there. Rather, he thinks I have something called a pulmonary arteriovenous malformation (PAVM), which is a rare condition that occurs when arteries and veins in the lungs are abnormally connected, disrupting the normal flow of blood and gas exchange... essentially a hole in your lung. Most people that have PAVM are born with it, but it can also be caused by chest trauma (like maybe getting COVID when you're severely immunocompromised with already fragile lungs??). Although there is a minimally invasive procedure that can correct a PAVM, the structural heart doctor wants to hold off on that to see if I can heal more naturally with continued steroid and breathing treatment. He left by suggesting I follow up at his clinic in 6 weeks to see if I've made progress and make a plan from there. 


After meeting with the structural heart doctor, I met with another pulmonologist. Completely contrary to the structural heart doc, she suggested that my shortness of breath was due to the PFO (heart hole) and not the PAVM (lung hole). So, that was confusing! Because the two doctors disagreed, they requested the radiologist who read my echocardiogram to look more closely so they could have a more decisive answer. They did not feel I needed to wait around the hospital for that to happen, so with that, I was discharged Monday afternoon (9/16). 


Although I am of course happy to be home from the hospital after being there for 4 days, it was a little disheartening to leave knowing I would still be tied to oxygen for the foreseeable future and I still don't really know what's wrong. I was hopeful that there would be something that could "fix me" and get me back to my "normal" breathing. The docs did clear me to use oxygen only with activity and sleeping, so that was an improvement! I'm hopeful that slowly but surely I will continue to heal and be able to get back to doing the things I enjoy. 


At this time, please continue praying for my family and me during this difficult stage in my cancer journey. Requiring oxygen reduces my freedom pretty significantly. I do have a portable oxygen concentrator, which allows me access to oxygen outside of the house, but the battery life is only 2-3 hours... yikes! Also, even with the oxygen, I'm still not able to go for even short walks at this time. Again, we're hopeful that this will come with time. Please pray that my body continues to heal from whatever is causing this shortness of breath. Please also pray for my mental health as I adjust to this new normal. I continue to persevere through these tough moments, hoping and praying that God is using my struggle for good and that there is something greater in store for me. I have been clinging to Hebrews 12:1-2: "Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith."


With love and gratitude, 


Sierra

September 12, 2024

Hey Team Z! I have a little (big?) health/life update to share. On August 11th I tested positive for COVID. This was scary, because last time I had COVID I had lung complications that required two surgeries to resolve. It was also super anxiety inducing, because in order to take Paxlovid (which my docs were pretty insistent on), I had to take a break from my clinical trial drugs for three weeks. Despite the Paxlovid, I still experienced shortness of breath (above my baseline).

I’ve been recovering from COVID for about 4 weeks now, but this past weekend my shortness of breath worsened. On Wednesday (yesterday) I saw my pulmonologist in Grand Rapids, who isn’t 100% sure of what’s causing the sudden increased shortness of breath. It’s possible that I’m still experiencing shortness of breath from COVID, or that there is a different infection lingering. However, my doctors are thinking it’s more likely due to growth in my lung nodules. There is one lung nodule that is pressing on and slightly displacing my heart, which we’ve been observing for a while now, but it might just now be starting to act up and causing me to struggle. Regardless of the cause, my oxygen saturation was dipping into dangerous levels, and so I was prescribed supplemental at-home oxygen. This will be my new normal until we can figure things out.

This morning, I had an echocardiogram to check on how that nodule might be affecting my heart function. We do not know the results yet, but we are praying that my heart is functioning normally despite the nodule.

Wearing oxygen 24/7 is obviously a huge change to my quality of life and has been a lot for me and my family to adjust to and absorb. We are hopeful that the supplemental oxygen will be a temporary solution and that my breathing will start to “normalize” on its own with time (and antibiotics).

I’m continuing to be fierce and go forth, friends! Please pray for my mental and physical toughness, that I may find relief from shortness of breath, and for my family who has had to provide more regular care for me while I’m immobilized. You’re fervent prayers are so appreciated


With love and gratitude, 

Sierra <3

May 29, 2024

Hello to all my long lost readers! (Can you tell I've been watching Bridgerton?) I've been reminded quite frequently in the last few weeks that I have not posted any updates in this space in quite awhile! It seems you may be right, my last update was in February, WOW! When I first started this "blog", it was a place where I could update those inquiring about my cancer journey. However, since "my cancer journey" has merged to become "my life" (this is what happens when you're Stage IV and incurable), I'm finding that updates are a little more cumbersome. I do not consider my day to day interactions, although many of them do involve cancer related things, my cancer journey. I can't let it be that way, or else my whole life becomes surviving cancer. Instead, I've transitioned to viewing my cancer related interactions as just another part of my life. Taking cancer fighting drugs is a part of my life. Traveling to Houston twice a month is part of my life. However, these parts of me do not define me; my life is more than my journey with cancer. With that being said, I don't see myself updating about "my cancer journey" (my life) in this space quite as often, because I don't really have much to update. Of course, if there are big changes in my treatment or well-being, I will make sure to include them here so that the information and prayer requests are spread far and wide. In this update, I will try to catch you up to speed on what's happened since February. In the future, if you are truly interested in my day to day life, I do post pretty frequently on my Instagram: @sierrafightssarcoma. Additionally, any appointment and scan updates usually are posted on my Facebook. 

We arrived home from our long stay in Houston sometime during the last week of February (I can't even remember the exact date). After our arrival home, I still had to travel back and forth to Houston 2 out of every three weeks. Luckily that schedule changed to be 1 visit during a 3 week cycle after my last set of scans. Although traveling every three weeks still feels like a lot, it's so much better than the previous schedule. 

Speaking of scans, I've had 2 sets of scans on my current clinical trial since starting it in January, one in March and one in April. Although both scans showed what is considered to be "stable" disease, they also both showed slight growth in my lung nodules. Confusing, isn't it? Let me explain: any growth or shrinkage within 20% of the tumor's size at the start of the trial is considered stable disease. My scan in April showed that my lung nodules had grown an average of 3%, which is why it was still considered stable. Usually, when I get news of stable disease, I celebrate that the trial is working. However, I've been doing this long enough now to know that even 3% growth, whether it's technically "stable" or not, adds up over time. Some of the nodules in my lungs are in places in which even very slight growth could make a huge difference in my ability to breath. My doctors are very aware of this, and so they are watching the nodules very closely. I have another set of scans on June 6th (next week). **My biggest prayer request at this time is that these scans show no growth at all, and I also boldly pray that there might be shrinkage in the nodules (or maybe that the nodules have disappeared completely?!).**

One question that I'm asked all the time is "How are you feeling?". Although it might seem like a simple question, it's really a hard one for me to answer, especially in a quick conversation. So, let me lay it all out for you in the raw here... The easy answer: "I'm feeling pretty good". This clinical trial drug does have some side effects, including nausea, but I only have to take the drug 3 days a week. During those days, like clock work I start to feel nauseas between 1:30 and 2:30pm. Luckily, I have some pretty good nausea medication that I can take and the nausea tends to go away after an hour or so. On my 4 off days, I generally feel pretty good. I am overall more fatigued than I was on my last clinical trial, but I have plenty of time to take naps during the day. So, that leaves me with the tough, more real response to the question, "How are you feeling?" The truth is that the cancer in my lungs has left me with only 30% lung capacity. What that means is, while an average person can rely on 100% of their lungs to produce regular and consistent breathing during daily activities and exercise, I can only rely on 30% of mine. With that, I often feel winded doing very basic tasks. One of the most exhausting things during my day, believe it or not, is getting dressed. Bending over, stepping on one foot to put pants on, pulling pants up and pulling a shirt over... these movements are extremely exhausting for me and cause me to be really winded. So, if getting dressed is exhausting for me, then you can try to imagine how hard other daily tasks are. Although I always have difficulty breathing, what I'm capable of on a day to day basis varies. For example, last week I purchased $150 worth of flowers, planted them all myself, and then still felt good enough to walk Champ in the evening. However, other times, like last night, I had a hard time walking from my car to the grocery store. Then, when I went to walk Champ in the evening, I had to turn around because breathing was too hard. This is the part of my life with cancer that causes me the most distress. Nausea is temporary; most side effects are temporary, but I'm reminded of my cancer every minute of every day because of my inability to breath normally. I hope this helps you have a better understanding of what I'm going through. I know it's really hard to tell from my outward appearance; my hair is growing back, I'm gaining weight again, and I do really enjoy my life as much as I can; but please know that there is much more going on than what you can see from the outside. Although I do work hard to live my life to the fullest and enjoy every moment, every day is also a internal battle in which I try to accept my life as it is with all the new challenges. 

I realize that reading my raw reality is probably hard for most of you, it was hard for me to even put it into words. So, let me end by sharing the ways that I have been living every single day to the fullest!

I told you I live my life to the fullest!! :) 

I can't say thank you enough to the folks who are still actively waiting for these updates, who are praying for me daily, who are supporting me from near and far, and who walk through this life alongside me with love and grace. Like I mentioned, my biggest prayer request at this time is for my upcoming scans, which are on June 6th. Please pray that these scans show signs of the clinical trial drug working hard to combat the cancer in my body. Pray that my nodules have not grown, that they are shrinking, and, boldly, that they are disappearing altogether. Your thoughts, prayers, support, and encouragement, mean so much to my family and me. 

With love and gratitude, 

Sierra 


February 13, 2024

Hello, Team Z! I'm coming to you from my sunny little apartment in Houston today! We have been extremely blessed by the sun this year; it's been sunny pretty much every day with the occasional rain storm. Although this week is a little colder (60s), it's been 65-75 degrees most days. Warm weather sure does make our time here more enjoyable! We spend most of our days following the same routine: "work" (my mom is actually working, I just make myself busy with "work"), walk, cook/eat, and Netflix. Champ has been doing extremely well and has adjusted to city life with ease. He's made a few friends in our apartment complex that he gets to play with in our dog park! I've posted a little about how the trial has been going on my social media, but here are some more updates for those interested: 

On January 26th, I officially started the trial. The trial consists of two different inhibitor drugs: RP-3500, and ATR inhibitor, and RP-6306, a PKMYT1 inhibitor. If you're really interested in the trial, you can learn more here: https://clinicaltrials.gov/study/NCT04855656#study-overview. We were a little nervous (okay, a lot nervous) that my kidney function was going to keep me from being eligible, but all was "well" when I did blood work here in the days prior to starting. My kidney function is still a concern, but it is slowly but surely trending down (down is good) since I stopped my last trial. The first day of the trial was an extremely long day in the clinic; they monitored my blood and heart for 8 hours. Then, we had to return again the next day (which was Saturday, boo) for 4 more hours of monitoring. 

After those two long days in the clinic, I've been taking the drugs on my own with weekly check-ups on Fridays. The drug schedule is 3 days on, 4 days off. During the first two weeks of "on days" I was nauseas, and even threw up a few times. This week, which is my third week of taking the drugs, I did not get sick at all! I was starting to feel really down about the drug... feeling sick every day is obviously uncomfortable and discouraging. I'm so thankful I've been feeling better this week. The only side effect I'm still experiencing is fatigue, which is tolerable, of course, but still not great. Hopefully, my body will continue to adjust to the drugs and my energy levels will normalize. 

Looking forward, I have two more long days in the clinic on February 19th and 20th. I also have another lung biopsy on the 20th. You may remember that I had a biopsy prior to starting the trial, which I was nervous about. I have historically had a lot of complications with biopsies; lung biopsies are very tedious and can easily result in a pneumothorax (collapsed lung) for someone like me. Fortunately, the last biopsy went really well! Unfortunately, the trial protocol requires a "paired-biopsy" so they can compare my tumor tissue before taking the drug and while taking the drug. Please pray my biopsy on the 20th goes just as smoothly as the last one!

We have been absolutely showered with love during our time here in Houston. We've received so many beautiful cards and packages that have made us feel so supported and encouraged. I have to give a special shout out to my amazing Aunt Jodi and Uncle Scott, who have been sending us *themed* packages EVERY WEEK! Thank you much for wrapping us in your arms (from afar) and covering us in prayer. We definitely feel it! We will be driving back home on February 27th, exactly two weeks from today! We can't wait to be home, but do hope that we can take the sunshine with us :) 

With love and gratitude, 

Sierra 

January 15, 2024

Merry Christmas and Happy New Year, Team Z! The holiday season was extremely busy for me (as I'm sure it was for you as well!), so I apologize for not getting an update published more quickly! If you're on my Instagram or Facebook page, you already have the latest updates. However, this update may have more accurate information, as most of the scheduling details have been ironed out at this point. So... here's the scoop!

On December 27th, my mom and I flew to Houston for my clinical trial scans. As we expected, my scans showed a continued pattern of growth. Although the growth was minimal, even millimeters of growth over time can greatly affect quality of life. So, with that, my doctors made the decision to end the BLU-222 trial after 12 cycles. I’m so grateful to have been on the trial for a full year; which was by far the longest I’ve been on a single treatment. I’m also incredibly grateful for my team of doctors who continue to make my overall health and well-being their number one priority as they make such important decisions for my care.

As I mentioned in my previous update, my doctors had already been discussing what trial might be best for me after I end BLU-222 for awhile. So, we didn't have to waste any time having those conversation when I officially ended the trial in December. I will be starting the new trial that they chose for me on January 26th (pending good bloodwork, which will be done locally on Jan. 18th). This trial is similar to BLU in that it will be an oral inhibitor drug (for those interested, it’s called the Mythic trial). The trial has been open for two years and has yielded a lot of great results; I'm super hopeful and excited to be given the opportunity to enter this trial! The downfall is that I will have to stay in Houston for the first two cycles of the trial, which will be a little over 5 weeks. My mom and I plan to drive to Houston this time so that I can have Champ with me. Since I have to be in Houston a week before starting the trial for biopsies and other preliminary tests, we plan to start the road trip on January 20th. After the first 5 weeks, I will fly back and forth every other week for appointments, and then eventually (if I'm able to continue beyond 4 cycles), we will fly back and forth every three weeks. 

As I mentioned above, my acceptance into this trial is still pending the results of blood work that I will have done locally. Specifically, my doctors are looking closely at my kidney function (creatinine), which has suffered from the amount of chemo my body has endured, as well as the contrast that is used during scans. If my creatinine or any other count is not at an appropriate level, I will not be accepted into the trial. Please pray specifically for my kidney function to improve before January 18th. 

Thank you for keeping my family and me in your prayers as I get ready to embark on another new treatment away from home. Pray first and foremost that the results of my bloodwork are good enough for me to be accepted into the trial, pray for safe travels for my mom and I, pray that the I tolerate the trial medication well, pray that I am able to be mentally strong as I'm away from home, and ultimately, pray that this trial keeps my cancer from growing! Please also pray for my mental health as we get closer to the start of the trial, and further from the last day I was on treatment. Being off treatment for the past month has been extremely hard on me mentally; it's so hard to think about (or try not to think about) what might be happening in my body while there's nothing being done to fight the cancer. Oh! And don't forget to pray for my dad and Josh while my mom and I are in Houston. They will both be home alone, which can be extremely taxing on your mental health. All in all, please just cover us in prayer over the next few months; we appreciate it more than we could ever express. 

With love and gratitude, 

Sierra

November 9, 2023

Hello Team Z! Well, summer has turned into fall and I am officially in my 11th cycle of the BLU-222 clinical trial. I feel really blessed that I have had almost a full year on the trial, and my doctors are really pleased with this longevity as well. This consistency allowed me to have a summer full of adventures and the most amazing trip to Switzerland with Josh this fall! 

Unfortunately, my time on the BLU-222 trial is coming to an end. My last 3 rounds of scans all showed a few millimeters of growth here and there on my lung nodules. A few millimeters isn't a lot, and in fact my cancer is still considered stable even with that growth. However, eventually millimeters turn into centimeters when the pattern of growth continues, which it has. Although the drug has significantly slowed the growth of the cancer in my lungs, it is no longer keeping it from growing completely (as it was doing in the beginning), so my doctors feel it's time to move on to another trial. 

After talking to my osteosarcoma oncologist last night, he was able to brief me on the plan that him and my clinical trial doctor have come up with. I will continue with the BLU-222 trial for one more round of scans, which will be on December 28th. At that time, if they are still seeing a pattern of growth, I will end the trial and move toward a new trial. They have already selected the next trial; it is similar to the one I'm participating in currently in that it isn't a chemo, but rather a gene inhibitor. That is good news for me, because inhibitor drugs are generally much easier to tolerate than chemo. The trial is located at MD Anderson in Houston, which means I will likely have to live there temporarily again for the first 4 weeks or so of the trial. I do not know the logistics of the trial yet, so this is all speculation at this point. 

Although I was not surprised that my doctors were ready to end the trial (I was aware of the trending growth), and I undoubtedly feel that this is the best plan for me, it is still extremely daunting and disheartening to think about starting a new trial. After 11 months of consistency on the BLU-222 trial, I've gotten really comfortable with my routine, and even maybe a little complacent about what a blessing it was that the trial was working. Although I never took my time on the trial for granted, I certainly let my guard down and allowed myself to feel more and more hopeful that I might have actually found the long-term maintenance drug I've been searching for. Even though I've had disappointments like this before, every time I let my guard down I leave myself vulnerable to the big feelings that come when things don't work out... fear, uncertainty, regret, helplessness, despair, hopelessness. This is where your prayers are crucial for my family and me during this time. As you know, I'm not fighting this alone, and I'm not the only one dealing with these big feelings. Please pray that we might find peace and comfort in the plan that my doctors have laid out for me. Pray that this next trial, whenever I might start it, will lead to more long-term stability for my cancer. Pray boldly for complete, miraculous healing in my body that only The Great Physician could perform.

Now that I've gotten the heavy stuff out of the way, let me share some of what I've been up to! As I wrote in my last update, Champ and I did some therapy work at the Cancer and Hematology Center. While we were there (and at a few other locations), we did some filming for a commercial for the CHC! The commercial has finally been completed and is ready for you to view: https://www.youtube.com/watch?v=zj_ozGwhfWU!!! In September, Aquinas College, my alma mater, hosted the second annual Saints Against Sarcoma volleyball game in my honor! The event was so much fun and I was thrilled to raise money for a nonprofit that is a champion for the osteosarcoma community (MIB Agents). Now, to the update you've really been waiting for, SWITZERLAND! Josh and I had the most amazing time exploring the country together. We started in the northern part (Zurich), which is German-speaking. Then, we made our way south by train to Lucerne (German-speaking), Geneva (French-speaking), and Chamonix (in France). Switzerland was the most beautiful place I've ever been, with the most perfect combination of historical cities and absolutely stunning views. I'm so glad that Josh and I had the ability to take that trip together, it was definitely a bucket-list opportunity for both of us. 

Thank you for your continued dedication to following my cancer journey. For me, the "journey" is just what I call life now. I'm learning to accept that moving from treatment to treatment is just what I do. Today I met a new doctor (dermatologist) and he asked me what I do for work. This question always bothers me because 1.) I had to leave the job I loved when I was diagnosed, 2.) I hate admitting that I don't work anymore and collect disability (even though I don't have a choice), and 3.) It always opens the door to explaining my "cancer journey". However, today I felt pretty comfortable saying "Well, I have cancer, so a big part of my life is moving from treatment to treatment, which has become my job." This response felt good because I feel like I'm finally accepting the cancer as a part of my life that I just have to do/deal with, but not the thing that defines me. Kinda of like a job that isn't really your dream job, but it pays the bills so you do it anyway. So, although I'm accepting this cancer as a part of my regular life, you have remained persistent in your prayers and support, not allowing me to be forgotten. For that, I am so incredibly grateful. As I approach three years dealing with this awful "job", it would be easy for you to just move on and remove yourself from my life. But you don't, because you're the best support system I could have asked for. Thank you from the bottom of my heart. 

With love and gratitude, 

Sierra 

August 30, 2023

Wow, wow, wow! I truly can't believe it's been 3 MONTHS since my last update!! I have no excuses for this lack of blog presence, but I will make one anyway... I've been having an AMAZING summer and haven't even had time to sit down and do this for all of you! Let me do my best to get you caught up...

LAST SCANS: My last scans were on July 11th and we met with my doctor on July 12th to discuss the results. We were elated that my scans were stable yet again! What a blessing it has been to have this kind of longevity on a treatment! The last time I experienced any kind of stability, it only lasted for 6 months. So, July being my 7th cycle and August my 8th, this is a new record for me! At this appointment we also discussed if remaining stable was the goal for me on this trial, and my doctor confirmed that longterm stability is our hope at this time. Just a reminder, "stable" results mean the cancer in my lungs has not grown or spread to any other places in my body. 

MY SUMMER: This summer has been absolutely perfect. Because my clinical trial drug is an oral treatment, I have had a lot of freedom to do the things that I enjoy. I'm only obligated to be in Houston once a month for bloodwork, a meeting with my doctor, and scans (scans are only every other month). So, between our visits to Houston, we have been super busy! Some highlights... we've spent pretty much every weekend at my parent's cottage. We've taken a few trips on the boat out to Lake Michigan, but mostly we just enjoy being together and soaking up the sun! I've also been taking care of a boy from our church a couple days a week. It has been really rewarding for me to use that skill set of mine again; he's learning to read! In July, we had our first annual Team Z Golf Outing! It was a huge success!! Josh and I are so incredibly thankful to all those who made the day so amazing. In August, we took a trip to Houghton to help Vaughn move into his apartment at Michigan Tech! We got to see some amazing sights while we were there. This definitely doesn't sum it all up, I'm already feeling the winter blues! 

NEXT SCANS: My next scans are (unfortunately) coming up quickly. My mom and I will fly to Houston on Sept. 4th for my scans the following morning on Sept. 5th. I will meet with my doctor to discuss the results on Sept. 6th. These scans, if found stable, will lead into my 9th cycle of this trial! Just as a reminder, this drug is intended to be a maintenance drug, meaning I can take it long term as a way to maintain the growth of my nodules. We're hoping I can stay on the trial as long as possible! 

CHAMP UPDATE: I've had a lot of people reach out to ask for updates on Champ's training! After 12 weeks of attending training together, Champ passed his Canine Good Citizen test in early August! To pass the test, Champ had to successfully perform 10 different skills... but mostly it just means he's a certified Good Boy :) Some organizations will allow him to work as a therapy dog with this qualification alone, but most organizations require one additional certification. We are working on that final certification now. We were able to start our work together at the Cancer and Hematology Center in Grand Rapids this week, however! He was so great and I also felt extremely "full" being able to put a smile on some of the patient's faces in a place that I know all too well. 

FUTURE PLANS: Future planning, as you probably know, is nearly impossible for me given my dependence on scan results every 8 weeks. However, Josh and I love to travel and view seeing the world as one of the ways we can live our life together to the fullest. With that, Josh and I planned a trip to SWITZERLAND for late October! We, of course, purchased travelers insurance just in case my scans do not allow me to continue on the trial, in which case we would have to make some quick changes to my treatment plan, requiring a lot of back and forth to Houston. We are very hopeful, though, that these scans will be stable and then I won't have scans again until November. 

PRAYER REQUESTS: The longer I remain on this treatment, naturally, the more hopeful I feel about its success. If there's one thing I've learned, though, it's that big hope can set you up for big disappointment. Please pray that this trial drug will continue to work miracles in my body, keeping my cancer stable and from spreading. Please also pray for my family's and my mental health as we approach these upcoming scans. With a Switzerland trip on the line, I feel really anxious. Although I feel very hopeful for this drug, I also feel a little like it's only a matter of time before it stops working... I've already had that happen to me so many times. Please pray that I will lay these anxieties and worries on the Lord so that I can remain hopeful and faithful, putting my trust in Him. 

Thanks for keeping up with my journey! Keep an eye out for updates following my scans on September 5th. 

With love and gratitude, 

Sierra 

May 22, 2023

Hello Team Z! I am so HAPPY to share the results of my latest scans!! If you're on social media, you already know, but I always want to make sure to share things here as well (for all those who live under a rock ;) ). Last week my mom and I traveled to Houston so that I could have a plethora of scans and blood work done. I had a Chest CT, a Bone Scan, an Abdomen/Pelvis CT, a Chest X-Ray, and something new for me, a Lumbar Spine CT. All these scans indicated that my cancer is STABLE!!! In addition, there was no indication of cancer in any other parts of my body! My doctor did tell me not to put too much weight on the growth percentage, but I'm going to anyway.... -13% growth!! WHAT?! What a massive answered prayer and relief! I've NEVER had this kind of success with a drug thus far in my cancer journey; I couldn't be happier or more thankful for the ways God is working through science in my body!! 

If you read my last update, you know that I've been struggling with back pain lately. It was for this reason that my doctors added the Lumbar Spine CT scan to my laundry list of scans. This scan indicated that I have a stress fracture on the left side of my sacrum. So weird! It is on the side my limb salvage surgery was on, so it's not super surprising, I guess, that my body is a little stressed out over there. I'm not sure yet exactly what this means for me, I will be in communication with my orthopedic doctor this week to get more information. 

Something you probably didn't know, is that the week before my scans (May 11th), I ended up in the emergency room for shortness of breath. It was just two days after I shared my last update. I had been noticing more shortness of breath for the whole week, but thought it must be in my head. It wasn't until my Apple Watch detected and notified me about a new respiratory rate trend that I realized it probably wasn't in my head. My respiratory rate went from trending at 21 breaths/minute (which is already higher than an average person), to 25 breaths/minute). With that information, I contacted my radiation team at MD Anderson, knowing that sometimes radiation to the lungs can cause shortness of breath; mostly I was just hoping they would confirm that this was to be expected at this time after radiation. However, they were not nearly as chill about it as I thought they would be! They suggested I contact my local oncologist and be seen immediately. So, with that, I contact my local oncologist, who I only ever talk to or see when I have problems like this (poor guy), and he suggested I go to the emergency room to rule out a pulmonary embolism (blood clot in the lungs). I had a chest CT scan in the ER, which confirmed I did not have a blood clot, but they did notice a bit of pleural fluid around my lungs. Because they didn't have any current CT scans to compare to, this was concerning to them. I assured them that I've had a little remaining pleural fluid since January, and it's not a big deal. At 11:30pm, they called my local oncologist to ask if I was right about it not being a big deal (again, poor guy), and he assured them "She's fine". Lol... this still makes me laugh. SOO all this to say, I was short of breath but no one really knew why. Last week in Houston, I saw my pulmonologist, who used an X-ray and ultrasound to look at my lungs. She didn't see any more pleural fluid than I had previously, so we are still a little stumped about what might be causing me to be more short of breath. My best guess is that it's from the anxiety of the scans... if that is the case, hopefully I will be back to my "normal" breathing soon. 

I can't thank you all enough for opening the flood gates with your prayers last week. My mom and I joked that God is probably sick of hearing my name by now!! I know there are so many people all over the WORLD praying for me, and I can't tell you how much peace and comfort that brings me. Our prayers are being heard!! 

With love and gratitude, 

Sierra

May 9, 2023

Wow! It has been awhile! I went to the dentist last week and my dentist said "It's been awhile since you updated your blog..." I can take a hint!! Since my last update, I have been trying to embrace my time at home. I was so excited for this extended period of time where I wouldn't have to go to Houston so regularly, but with all the time at home I've found it hard to stay busy. People constantly ask: "How are you feeling?!" and my answer is usually (if I'm being honest on that day) twofold...

Part 1 of my answer is that I'm feeling really great physically. I have very minimal side effects from the drug. My energy levels are great, I don't feel sick, and because the drug is a pill, I have so much freedom. My only physical complaint right now is that I've been experiencing back pain. I've been going to physical therapy for a couple weeks, but I haven't found any relief. We're thinking the pain is due to the limb difference in my legs... meaning the length, strength, and mobility differences that exist as a result of my limb salvage surgery. It's been about two years since my surgery, so my body is starting to "adjust" to the difference. I'm learning that its extremely common for people who've had my surgery to also experience back pain. This is something that you might pray for, that I might find some relief from this pain. 

Part 2 of my answer to the question: "How are you feeling?" is a little more complicated. Because I feel so good physically, my brain often tells me I should be doing more with my time. I should be getting back to my normal life, even though that is clearly not in the cards for me right now. I just turned 29 last week, and the things that most people my age are doing (having babies, buying houses, advancing in their careers, etc.) are so far out of reach for me. My "normal" life is long gone and will never exist as my normal again. With that, I have been struggling mentally. While I was in Houston, I longed for the time when I could be home. However, now that I'm here, I'm constantly searching for my purpose. Although I stay pretty busy with house work and other tasks, none of this makes me feel purposeful or valuable. I've been working hard to combat these feelings by picking up new hobbies and "jobs" that make me feel like I'm accomplishing something. One thing that I'm working on right now is training Champ to pass the AKC Canine Good Citizen test, allowing him to be a therapy dog. A lot of people assume when I tell them about this that I'm training him so he might go to the hospital with me. Actually, though, it's so that we can visit hospitals and doctors offices together, allowing him to share his love and snuggles with others as a form of therapy for them. I'm not sure if he'll ever pass the test (lol), but working toward that goal has brought me a lot of joy and feelings of purpose. Another endeavor I'm working toward is learning to play the guitar. I got a guitar and a gift card for lessons for my birthday, so I will hopefully be getting started with this within the next couple of weeks! At the end of the day, I remain so thankful that I get to be home while receiving this treatment. I'm working hard to rewrite my "normal" and accept it as a life just as valuable and purposeful as the one I had before. 

After people ask "How are you feeling?", the next question is usually, "When do you go back to Houston?" That question is far easier to answer! My next trip to Houston is next week already. I will have scans on May 16th, followed by a meeting with the clinical trial doctor on May 17th. Then, on the 18th I will meet with my pulmonology team. The scans include a full body bone scan (checks my bones for any signs of cancer) and a chest, abdominal, and pelvic CT scan (checks my organs in those areas for signs of cancer). My pulmonology team will also do an ultrasound of my lungs to check if the pleural fluid from my previous pleural effusions is still draining, or if it's starting to accumulate again. Of course, the best case scenario is that my scans remain stable (showing no signs of growth) and that there is no pleural fluid accumulating, allowing me to continue with the trial. We don't have a contingency plan at this point, so these scans are wildly important, and naturally, extremely anxiety inducing. As May 16th comes closer, please pray for peace for my family and me. Last time I had scans (in March), I felt extremely at peace and had very few moments of nervousness. I contribute that feeling to all your prayers; please keep them coming as this next round of scans approaches! 

I will forever be so incredibly grateful to everyone reading this, praying for me, routing for me, encouraging me, loving me, sending me good vibes, and truly getting me through the hard days. I think I'm introduced to someone new who's been reading my blog and praying for me at least monthly. What an incredible feeling. The least I can do is keep you updated, and I will continue to do so. Thanks, Dr. Sampair, for the reminder to get to it! :)

With love and gratitude, 

Sierra

March 24, 2023

I come with good news! For those of you not on social media, I just wanted to share that we are ecstatic with the news I got from my clinical trial team on Wednesday! My scans showed the cancer in my lungs is STABLE (meaning it has not grown) and there is no new evidence of disease in other parts of my body! This means I can continue with the trial! From here on out, I will only have to visit the clinic in Houston once a month and I will have scans again in 8 weeks. We hope and pray that I will continue to find success with this clinical trial drug! Having to visit the clinic only once a month offers me a lot more time to enjoy myself... let the planning begin!! 

I am so, so thankful for all of you who prayed persistantly for these results. Your prayers are working! God is working miracles in my body! 

With love and GRATITUDE, 

Sierra 

March 20, 2023

Hello Team Z! I just wanted to very quickly update everyone on how I've been feeling, what I've been up to, and most importantly, how you can pray for me this week! 

I am so, so happy to report that I have been feeling GOOD! No ifs, ands, or buts, about it. I've not quite been home from Houston for a month yet, and really, during that month I've hardly been home at all! My family and I had the opportunity to spend a week in Mexico shortly after I got home, which was so special, so needed, and so fun!! We haven't gone on a vacation all together since my youngest sibling (Vaughn, who is 22) entered adulthood... let's just say it's a completely different vacation vibe when we're all adults!! Not only did we have an amazing time as a family, but I also got to test my limits a bit throughout our week. I was able to play beach volleyball alongside my family everyday! I was able to walk through the Mayan ruins in 85 degree temps up hills and stairs without any problems. I was able to jump in and swim through two different cenotes (if you don't know what a cenote is, Google it, and then immediately add swimming in one to your bucket list!). Lastly, I was able to snorkel with sea turtles! I did add swimming to my list of things that are much harder for me now than ever before. With one bad leg, and two bad lungs... it turns out swimming is pretty difficult (and I wasn't a great swimmer to start with)! However, we had some really awesome guides who made sure I was able to enjoy the experience regardless. People are awesome. This trip meant the absolute world to my family and me (mom, try to hold back the tears here :) ). Although I'm still struggling with coughing a bit, and my heart rate is still not completely normal, I felt closer to "normal" (whatever that means for me) on this trip than I have since before Christmas (when I had COVID). 

In my previous update, I mentioned two different fundraisers that were being held for me during the month of March. Both events were a HUGE success and left me feeling so loved and encouraged. The first event was put on by one of my former students; I continue to be so overwhelmed by and thankful for the way the Byron Center community has wrapped their arms around me. The second event was held by my friends/roommates/teammates from college. I'm so thankful for the friendships that I formed at Aquinas and for the ways those friendships continue to bless me. Would you believe that the two events had hardly any cross over as far as attendees!? I am so blown away by the number of people who showed up in my honor and I'm incredibly thankful for their gracious generosity. 

Alright... that's all the fun things I have to share. Now I have to ask you for some BIG prayers as we head into scan week... On Tuesday, my mom and I will fly to Houston in the morning. That afternoon, I will have a full body CT and a bone scan to look at how/if the cancer is progressing in my body. Obviously, the hope is that it's not progressing and that there is no new evidence of disease in other parts of my body. On Wednesday, I will have blood work done to make sure my organs are functioning okay and to see how the drug has effected my blood counts. Then, I will have an appointment with my clinical trial doctor to discuss the scans and to determine if I will be moving forward with the trial. After that, I have a follow up appointment with the radiation doctor. Finally, somewhere in there (having trouble scheduling this one), I will meet with my pulmonologist to check in on the remaining fluid around my lungs. After this extremely long, emotional day, we will fly back home on Wednesday night. As if all the emotions and anxiety attached to these appointments weren't enough, adding the travel piece creates a marathon of exhaustion and nerves for my mom and me (and my family who are not with us as well). We ask for your prayers during the next two days, as we undoubtedly will be on an emotional rollercoaster. We pray that we leave Houston on Wednesday with nothing but smiles on our faces from all the good news we've received. We also pray, however, that if it's not all good news, that we are able to cope with the emotions and remain hopeful in my journey.  

Before I end this update, I just have to say a huge THANK YOU to everyone reading this. I have been reminded time and time again over the past three months just how amazing my support system is. From cards and packages delivered to my apartment in Houston to fundraising events planned for me in Grand Rapids, I have felt so, so loved and supported by my Team Z family. During the month of March specifically, I've met at least five different people who introduced themselves to me in a way similar to this: "Hi Sierra, you don't know me, but I've been praying for you!" I can't even begin to explain how heart warming and encouraging it is to meet someone for the first time and learn that although we've never met, somehow, somewhere, they heard about my story and have been praying ever since. Wow. My mom (and many people, actually) ask me all the time, "Where do you get all that energy?" or "I don't know how you do it!" I don't know where I get the energy either, but if I had to guess, I would say it's from the massive support system that continuously and persistently holds me in prayer and covers me in love. I will never stop thanking God for the army of warriors that are fighting this battle alongside me. 

With love and gratitude, 

Sierra 

February 16, 2023

Happy February, Team Z! On February 9th, I celebrated my two year "cancer-versary". It's hard to believe its only been two years, I feel like I've been doing this cancer thing for at least 100 years now! I'm always a little unsure about whether the anniversary of the day I was diagnosed with cancer is something to celebrate, or cry about. This year, though, I decided to celebrate that I have continued to be fierce and go forth even after two years of fighting. 

My last update was extremely long and explained the roller coaster ride I had been on over the month of January. You might recall that the day before my last update, I had a second thoracentesis procedure to drain more fluid from around my lung. This procedure was not recommended by my pulmonologist since the first thoracentesis didn't offer me any sort of relief. However, my main oncologist advocated that I get it done anyway, and I'm so, so thankful that he did. After that procedure, I felt miraculously better. I went from being extremely winded just from going to the bathroom and getting around in a wheelchair, to walking around the entire Houston Zoo with my mom, dad, and Josh! We were also able to visit NASA while my dad and Josh were visiting! It was an extremely miraculous recovery for me. Shortness of breath is extremely scary; the month of January was the most scared for my life I've been thus far in my cancer battle. Having experienced that really low point, though, has allowed me to appreciate my working lungs so much more. I am so grateful for God's healing hands. 

With that, I am happy to report that my February has been much smoother sailing! On February 2nd, I started Stereotactic Body Radiotherapy (SBRT). SBRT is a type of radiation therapy that uses many beams of energy to carefully target tumor cells. It is a super advanced form of radiation that is much safer and more effective than radiation treatments from the past. I was pleasantly surprised to learn that you don't see or feel radiation when you receive the treatment. On my first day, I asked, "That's it?!" after they told me I was done. The treatment is only 10 minutes long at the most. So far, the only side effects I've experienced are fatigue and soreness around the areas that are receiving radiation. In my last update, I thought I was going to be having 5 radiation treatments, but they actually changed it to 12 treatments shortly after I finished my update. So, I will be officially done with my 12 radiation treatments on Friday, February 17th (tomorrow!!). 

One thing about radiation that I really appreciate, is that you meet with your radiation doctor once a week while you're receiving treatment. Another nice feature is that before receiving the radiation every day, images of the area are taken to ensure that the beams are aimed at the right area inside my body. Having images done every day also allows the doctor to keep an eye on how things are progressing, almost in real time. Prior to starting radiation, my doctor had indicated that he would keep a close eye on the images every day to see if any additional fluid started to collect around my lungs. If that were the case, he explained that I would likely need a semi-permanent catheter to drain the fluid as needed to avoid having additional thoracentesis procedures. I was a little bummed to hear this; I don't think anyone would look forward to having a catheter placed in their body; but ultimately I would not argue with something that would improve my quality of life. To all of our surprise, however, at my first weekly check-in appointment with my radiation doctor, he shared that almost all the fluid that was still around my lungs after the thoracentesis (about 500ml) had been completely re-absorbed by my body. There was only about 200ml of fluid remaining, which isn't even enough to drain using a catheter or thoracentesis. We are so thankful that my body is still working so hard to take care of business. This was a huge answered prayer! We pray that I can remain pleural fluid free from here on out! 

I have not been able to take my clinical trial drugs while I've been doing radiation. This is because there is little to no research published that studies the body's reaction when the two are combined (remember, it's a very new drug). I can start taking my clinical trial drug again 48 hours after completing radiation. Before doing so, however, I will have some bloodwork done and a meeting with the clinical trial doctor on February 22nd. After that appointment, I am wheels up back to Grand Rapids, MI on February 23rd! I am SO excited to be home.

While I'm at home, I will continue to take the clinical trial drug daily. My next check-in appointment with the clinical trial doctor at MD Anderson is March 1st... so unfortunately we will be back in Houston sooner than I would like! I will have my first set of scans to assess the initial success of the trial around March 20th (not scheduled yet). If these scans show that my lung nodules are not growing and there is no new evidence of disease, then I will continue on the trial, moving into Cycle 3. Our prayer, of course, is that this trial drug is THE drug that will keep my cancer from growing forever. However, I would be extremely thankful just to remain on the trial through a few more rounds of scans. The more time I can remain on this trial, the more time researchers have to make discoveries leading to new, potentially more effective trials.

Although we are certainly VERY excited that our time in Houston is coming to an end, my mom and I did have some really great times together while we were here. I am so, so incredibly blessed that my mom and I get along as well as we do, and that her job is flexible, allowing her to walk right by my side every step of this journey. My mom has been the ultimate sidekick. Moms... aren't they just the best!? :) 

It would be remiss of me to end this update without mentioning the fundraising events that are planned in my honor during the month of March! The first is the Team Z Benefit Concert, hosted by Cameron Renshaw, a student from my very first First Grade class. Cameron is an extremely talented cellist (a prodigy, you might say) who has had the opportunity to perform at Carnegie Hall and even on The Ellen Show. Not only is he talented, he also has the kindest heart! He decided to organize this benefit concert for me with the help of his mom, which will take place on March 4th at Wealthy Theatre in Grand Rapids. Along with Cameron, there will be other Team Z friends performing as well! You'll definitely want to grab your tickets for this event, as it's already over halfway full... Click here to buy tickets!  That's not all!! One of my best friends and roommates from college also put together a fundraiser, which will take place on March 14th at Benji Salon & Spa in Grand Rapids. This event features the work of an Aquinas College Volleyball teammate, who now owns The Welded Company, a permanent jewelry company! Join us at Benji from 5-8pm on the 14th to get your permanent jewelry, participate in raffles, and more! For more info, check out this Facebook event!

Thank you for all the ways you continue to support my cancer journey every single day. Two years ago, when I was first diagnosed, I was told this would be a 9 month battle. At that time, thinking about losing 9 whole months of my life was so upsetting. I can't believe we've now been doing this for 2 years. Although it's certainly not the way I would've chosen to spend ages 27 and 28, I continue to be so thankful for all the love, encouragement, and support I'm still receiving 2 years later. Thank you for walking by my side. 

With love and gratitude, 

Sierra 

January 27, 2023

Hello there, Team Z! I am writing to you today from my private room in the Clinical and Translational Research Center at MD Anderson. Today is my second and last long, long treatment day. I got here this morning at 8am and will be kicked out at 10:30pm when they close. I'm super bummed to report that my time in Houston has not been very enjoyable. In fact, my health has taken a pretty dramatic turn since I got here. This will be a long update, but only because a lot has happened over the course of the past 3 weeks... 

During our first week in Houston, I had many preliminary tests and scans done throughout the week for the clinical trial. On Thursday of that first week, I met with the trial doctor to discuss all of the scans and to determine my eligibility for the trial. The doctor explained that all my scans looked relatively good; the cancer hadn't spread, and although the cancer in my lungs did grow, the growth was not too dramatic. I was off treatment for so long after I ended up getting COVID that some growth was expected. The CT of my lungs did show something different that I've never had before, pleural effusions on both sides. A pleural effusion is when fluid is trapped around the lung. When this happens, is causes your lung to collapse in order to make space for the fluid. Depending on the severity, this can cause shortness of breath, coughing, chest pain, elevated heart rate, etc. Since I had a pretty decent amount of fluid on my right lung specifically, the doctor asked me if I've been short of breath. I had been short of breath for awhile at that point, but I was also recovering from COVID. I assumed that all my coughing and lack of stamina was just COVID still lingering in my body. Unfortunately, we learned, this was not the case. It is unclear exactly what caused the pleural effusions; it could have been complications from COVID, but more likely it was from the friction of my lung nodules rubbing against the lining of my lung. That irritation causes inflammation and then the fluid builds up. The trial doctor explained that the fluid would need to be drained from my right lung, and that I should feel much better afterward. However, he also shared that I might need to have these drainage procedures (called a thoracentesis) done regularly from now on. Given all of this information, we were so nervous that they were not going to accept me into the trial. However, the trial doctor explained that because I'm young and should be able to bounce back from the fluid situation relatively easily, I could move forward with the trial. Phew! We started the trial drugs, BLU-222 the next day (Friday, January 13), and order was placed for my thoracentesis procedure to drain the fluid. 

After that long, long day in the Clinical and Translational Research Center on Friday (the same place I'm spending this Friday), my mom and I were excited to get out and explore Houston on Saturday. However, I woke up feeling like my shortness of breath had gotten worse. I couldn't go to the bathroom or walk around at all without feeling really winded. Because it was a weekend, and we knew the clinic was closed on Monday due to Martin Luther King Day, it was clear that my thoracentesis wasn't going to be scheduled any time soon. With that, we made the decision to go to the emergency room. After more scans and blood work were done in the ER, they determined I needed a thoracentesis.... SURPRISE. The frustrating part of the emergency room... I'm sure you know what I mean. They were not able to get the procedure scheduled for Saturday, so we had to stay the night. Sunday morning, I was finally admitted into the hospital (which meant moving to a room with a window, thank God!) and I had the thoracentesis bed side that morning. They removed 1.2 liters of fluid from around my right lung (that's half a 2-liter of pop for perspective... mind blowing!). After the procedure, my lung naturally started to re-expand because it was no longer surrounded by so much fluid. When your lung re-expands it can be very painful; I ended up needing morphine to tolerate the intense pain. Because of the pain, I wasn't able to take deep breaths and my oxygen levels were low. It was determined that because of this, I needed to take oxygen home with me. We ended up having to stay another night waiting for the oxygen. Monday morning I was finally feeling a little better, and was determined to get the heck out of there. I asked if they could reevaluate me for the oxygen, which they did. Because my oxygen levels were back to normal, I did not have to take oxygen home after all. We finally were out of the hospital on Monday, Jan. 16th by 2:00pm. 

I thought that after removing 1.2 liters of fluid from around my lung, I would be feeling much, much better. Unfortunately, that was not my experience. The following week (our second week in Houston) I continued to be just as short of breath as I was before the thoracentesis. For perspective, my heart rate while sitting on the couch was about 100 and when I got up to do anything, it jumped to around 130. I had to get a chair for my shower and a chair for my closet so that I could take breaks while getting ready in the morning. I could not help my mom cook or even go to the grocery store. In MyChart, I could see an X-ray that was taken AFTER the thoracentesis and I could tell that there was still quite a bit of fluid around my right lung, it seemed like I needed another thoracentesis. I messaged the clinical trial doctor to let him know I was still not feeling better. He ordered another chest X-ray that we would discuss at my appointment with him on Friday, Jan. 20th... Friday. It was Tuesday. The pulmonologist who performed my thoracentesis in the hospital, Dr. Faiz, had said she would see me in her clinic to check up on how I was doing. I figured that while I waited for my Friday appointment with the trial doctor, maybe I could get that appointment with her going. I contacted her clinic and asked the scheduler when they would be able to get me in. She explained that although Dr. Faiz's next opening was in April, they were going to squeeze me in before January 31st per her request. I explained that that wasn't going work because I was very short of breath; they had me speak to a nurse who said she would talk to Dr. Faiz about my concerns. More waiting. So, that whole week I wasn't able to do anything other than work on my computer and ride in the car. Mom and I did try to break up the week by taking a road trip to the beach in Galveston. When we got there, though, it was so foggy that we couldn't even see the shore from our car!! (You can't even make sh*t this up). 

Friday finally came around and I met with my clinical trial doctor. On my way to that appointment, the nurse from pulmonology called and said Dr. Faiz would like to see me in her clinic that morning. I explained that I had another appointment and wouldn't be available until the afternoon; she promised to call me back with another time. The clinical trial doctor explained that my X-ray showed there was still quite a bit of fluid in my right lung (which I already knew from looking at the earlier X-ray), but it didn't look like there was more fluid. This was good to hear, because that means my lung wasn't filling back up with fluid right away... it was just still full. He talked about needing another thoracentesis and getting in touch with pulmunology. I explained that they actually wanted to meet with me that morning but I told them no because I had an appointment with him. He said, "Oh, that was more important, you should have went there instead".  Cool cool cool. 

At this point, I'm obviously very calm and collected... not upset or anxious at all. I attempted to call the pulmonology clinic and was put on hold and then eventually disconnected. The nurse who promised to call back with an appointment time never did. Finally, my mom and I just decided to walk up to the clinic, since we hadn't left the MD Anderson campus yet. I explained the situation to the lady at the front desk, who spoke with Dr. Faiz. Miraculously, they allowed me to squeeze an appointment in with her that afternoon. Dr. Faiz explained that in her professional opinion, if the first thoracentesis didn't help my breathing, then the fluid most likely wasn't the problem. She shared that she believes the reason I'm experiencing such extreme shortness of breath is because my largest lung nodule is pressing against my pulmonary artery, making air flow difficult. She said that getting another thoracentesis would be pointless because it didn't help the first time. This was extremely hard to hear, because removing a nodule inside my lung is much more complicated and risky than removing fluid around my lung. We asked what we could do about this, but she explained that the "solution" (if there was one) was outside of her area of expertise. She said she would get in touch with my main oncologist (Dr. Livingston) and the clinical trial doctor to share her findings. 

Very distraught, feeling a bit hopeless, and extremely anxious, my mom and I tried to stay busy over the weekend to keep our minds off this hard news. We rented a wheel chair so that I could do more than just sit in the apartment. This was very hard for me emotionally; the last time I was in a wheel chair it was after my surgery and I knew there was an end in sight. This time, I didn't (still don't) know if the wheel chair was/is temporary, or if this is just my life now. On Monday, I decided to send a MyChart message to Dr. Livingston to let him know what has been going on and to get the ball rolling. Before I even spoke with him about my message, 3 new appointments popped up on my schedule: a thoracentesis, a radiation consultation, and a radiation simulation. This is one of the many reasons I love Dr. Livingston, he doesn't waste time and he gets things done when you ask. When I eventually talked to him on Monday evening, he explained his 3-part plan for dealing with my breathing problem. First, he wants to try using an oral steroid to reduce any inflammation that might be present. Second, he wants to target the lung nodule pressing on my pulmonary artery using targeted radiation. Finally, he suggested I have another thoracentesis. He could see that there was still a lot of fluid around my lung and didn't see the harm in draining it. Also, the radiation team would be able to be more precise with their target with less fluid around my lung. 

So, on Wednesday, Jan. 25th, I had another thoracentesis. This one went much more smoothly than the one in the hospital; I didn't have any pain afterward and I actually felt relief! Would you believe they drained ANOTHER 1.2 liters of fluid!? I can't wrap my mind around how that much fluid could be around my lungs... I'm a small person, where was it all hiding?? The PA who performed the thoracentesis said she could tell there was still at least .5 liters of fluid remaining around my lung, but they do not drain more than 1.2 liters at a time. She said the remaining fluid might go away on its own, or I may have to come back and get it drained. My mom and I left the clinic and got coffee to celebrate my ability to walk to the car without needing a break to catch my breath. Then, we went to the grocery store and I was able to cook dinner for the first time in at least two weeks. 

The following day (yesterday), my Joshy arrived in Houston!! He and my dad came to visit my mom and me for a long weekend, which was so, so needed. We're so happy they're here! Josh and I attended the radiation consultation and simulation together on Thursday. The radiation doctor explained our plan; he wants to do 5 radiation treatments, which will begin on Feb. 2nd and end on Feb. 9th. The radiation with target only the lung nodule that's causing the breathing problems (targeting all of them would cause too much damage to my lungs). Although the clinical trial sponsor will allow me to do radiation while on the clinical trial, I cannot take the pill while I have radiation. So, I will have to take a break from the clinical trial drug for that one week. During the simulation, they used a CT to find the perfect path for radiation and marked up the target spots with three little baby tattoos. I'm feeling a little nervous about the idea of radiation, it's something completely new for me. However, I'm very thankful that there is something we can try; that gives me hope. 

Phew, I think that brings us to today! I warned you it would be long! If you got to this point, you might feel as emotionally drained as we do! Today, although I'm stuck in a small private room with no windows in the cancer center, I'm feeling better than I have since I first arrived in Houston. Don't tell Josh, he'll think he's the magic cure-all! ;) I'm hopeful that I will continue to feel better and breath with more ease as we move forward with Dr. Livingston's 3-part plan. I would be lying, though, if I didn't admit that I'm very nervous that shortness of breath might be "the new normal" for me. This thought keeps me up at night. Please pray for my mental endurance and perseverance as I wait for God's plan for my healing to come to fruition. Please also pray that my body will tolerate both the trial drug and the radiation. Please pray for my family, as watching me struggle without the ability to help is extremely difficult. Thank you, thank you, thank you. 

With love and gratitude, 

Sierra  

January 4, 2023

Happy New Year, Team Z! In my last update, I shared that I would be starting the New Year promptly by flying back to Houston to start my new clinical trial. I had appointments scheduled as early as January 1st;  my mom and I were planning to fly down early that Sunday morning. However, I was reminded yet again that I don't make the plans for the future, and neither do my doctors...

On Christmas Eve, Josh and I took COVID tests after a few of our relatives tested positive. I was quite certain that I was fine, but Josh does work closely with one of them, so we thought it would be better to be safe. We both tested negative and had a great night at our Christmas Eve celebration with our extended family. The next morning, I woke up with a bit of a cough and decided to take another COVID test. This time, I was extremely surprised and upset to have a positive test in front of me. The only reason I was even home for Christmas was because I told my doctors in Houston how important it was for me to spend the holidays with my family. What a disappointment it would be to miss that opportunity because of COVID!! I took two more tests, just to be absolutely sure, and both were negative. Josh and I opted to believe the 2/3 negative tests, and drove to my parents' where we spent our Christmas morning. After that, we went to Josh's parents to celebrate and then to his grandma's to end the night. What a great day we had! My Christmas was so full of family time, exactly how I wanted it. That night when we got home, I spiked a fever and went right to bed... ooooh no. 

I took another COVID test the next morning, and again I was positive. This time, I believed the positive test since I was still coughing, and now had a fever and body aches. With that, I contacted one of my nurses at MD Anderson, who informed me that their COVID quarantine protocol is 14 days after the first positive test... meaning I could not even be in their buildings until January 9th at the earliest. So, surprise! Mom and I would be home for New Years after all! (This should be read with a sarcastic undertone :) ). 

I don't think I have to explain how nerve wracking it is to prolong the start of treatment; if you've been following my journey, you know that the longer I'm off treatment, the more time the cancer in my lungs has to grow. Although, of course, I had this thought in the back of my head, I also considered that 1. there was nothing else I could do in such short notice and 2. this did offer me more time with my family, which is ultimately what I wanted. So, knowing there was literally nothing I could do (and I had clearly already exposed my family to COVID), Josh and I headed to my family's cottage after we were both feeling better. We spent last week watching football, playing games, relaxing, and enjoying more time with my family. We rang in the New Year with my mom, who was positive for COVID by then, and dad. 

On Sunday, January 8th, my mom and I will fly to Houston in preparation for my first appointment on the 9th, a lung biopsy. Well, that's the plan at least! I have had numerous complications with lung biopsies in the past, so I am not looking forward to having another one. It is required for the clinical trial, however, so I will put my game face on and get it done. I would appreciate your prayers for a successful biopsy, one that produces an adequate tumor sample and doesn't result in a pneumothorax. Over the course of next week, I will have many preliminary scans and tests, hopefully all leading to my first treatment on the trial on Friday, January 13th. Because I've already been through this process where, after all said and done, I did not end up being eligible for the trial, I am very leary to say "I'm starting the trial on January 13th". We hope that is the case, but I will not officially be accepted until my final consultation with the doctors on January 12th. This is another thing you might pray over, that all my scans and blood work go well and allow me to be accepted into the trial. 

Although I am not looking forward to being away from home for a month, Josh and I do have some things to look forward to when I come home! For Christmas this year, we asked for money toward different excursions we hope to go on in Costa Rica! We don't have any dates set yet (for obvious reasons), but hope to have a Costa Rican adventure sometime this Spring! We are also excited to stay overnight in a treehouse at Tree Vistas in February; this was one of Josh's Christmas gifts to me. 

Thank you, from the bottom of my heart, for keeping my family and me in your prayers throughout the month of January. We have certainly been through a lot, but this will be our first time being apart for an entire month. We can only hope and pray that this time away will elicit good results, making our time in Houston worth while. Please pray for peace and emotional endurance for all of us, but specifically for Josh, Vaughn, and my dad who will be at home without us. Please pray that my body tolerates this new treatment well, and that mom and I can maintain positive mental health while being away from home. 

With love and gratitude, 

Sierra

December 14, 2022

Hello friends, and happy holidays!! I can't believe we're less than two weeks from Christmas! Many of you know I had an important appointment with Dr. Livingston, my doctor at MD Anderson, last week. I wanted to share some details from that appointment with all of you. 

My mom and I flew to Houston on Thursday morning for a very quick and jam-packed trip. On Friday, my first appointment at MD Anderson was blood work at 6:15am! The time change definitely worked in our favor for that one! Following that appointment was a chest CT scan at 6:40am. Although it was rough getting up this early (at least for me!), it was so nice that the results from both my blood work and CT scan were already available for my doctors at the time of my appointments with them in the afternoon. First, I met with a doctor I've never met before, Dr. Rodon, who is a part of the Clinical Center for Targeted Therapy. In other words, he is a clincal trial doctor. He was able to discuss with me one clinical trial (although there are many) they currently have available that would be a good match for me according to my DNA testing results. He was very excited about the drug, which is an oral targeted therapy, and expressed that they were saving a spot in the trial for me. He also expressed that the decision to begin a clinical trial is not straight forward at this time, as my scans only showed minimal growth, and the growth that they do show can likely be attributed to the time I was off treatment between August and October. With that, he suggested I discuss my decision moving forward with Dr. Livingston, who I met with next. 

Dr. Livingston started our appointment by sharing that I could not make a wrong decision regarding next treatment steps. Because my scans seem to indicate the current treatment I'm doing in Grand Rapids is working, I could remain on that if I prefer to stay at home. However, he also explained that this clinical trial opportunity might not be there if I wait; clinical trials are competitive, and once they fill the slots they won't have openings again for months. Also, the longer I do the "standard treatment" in Grand Rapids, the more my blood counts will probably drop, which will exclude me from this trial. Although I felt excited about a new clinical drug, ultimately I did not want to be in Houston over the holidays. Experiencing something as life altering as cancer reminds you how fragile life is; missing moments with my family this Christmas was not worth it to me. However, because I respect and trust Dr. Livingston so much, once he expressed his opinion- that this was truly the perfect opportunity for me to jump on a trial- I agreed. Once I told him my concerns about being home for the holidays, Dr. Livingston said he would request a start date after the Christmas. 

After that appointment, my mom and I hopped in an Uber and headed directly for the airport. To my surprise, I received a phone call on the way from the clinical trial team to explain the trial further and give me a quick look at what the calendar would be like. The clinical trial drug is called BLU-222, a CDK2 inhibitor. Similar to the trial I was supposed to be on in Cincinnati, BLU-222 is a targeted therapy as opposed to chemotherapy. It's job is to directly target and destroy the genetic mutation in my DNA that's telling the cancer cells to continue growing. We were happy to hear that the time commitment for this trial is less than we originally anticipated. The first cycle (28 days/1 month) is very involved and will require me to be in Houston once a week for blood work. The second cycle/month, however, only requires me to be in Houston every other week. The third cycle and beyond is only once a month in Houston. My mom and I still haven't determined if we will fly back and forth for that first month, or just stay in Houston. Likely, it will depend on how I'm feeling. I will have scans after 8 weeks to determine if the drug is working and I can remain on the trial as long as it continues to work. Although we know for sure I will not be starting the trial until January 3rd at the earliest, we don't have any appointments set up yet. 

Although I'm not looking forward to being in Houston and away from my family and friends, I am excited about the opportunity to try a drug that is very different from anything I've tried before. All the drugs I've been on previously (including the clinical trial at UofM) were FDA approved and had been very well studied and researched. I knew they weren't going to cure me, or even maintain the growth of my tumors longterm, because they hadn't done that for other people in my situation. They were short-term solutions. This drug is so new and different (which is also a little scary), I feel hopeful that it might be that cure or maintenance drug that we don't currently have. This potential is exciting for me! Another factor that makes me feel hopeful is that if this drug isn't the one, then there are still many, many things we can try. 

So, as we head into the holidays, I feel more hopeful than I have in a long time. I am so excited to be home with my family to celebrate another year. We plan to do all our normal Christmas traditions on Christmas Eve and Christmas Day, and then we're headed to our cottage immediately after to spend the week together. I can't think of a better way to spend the holidays. Not only am I excited about these plans, I'm also excited to start a treatment that I feel good about. Houston ain't ready for the Vonda and Sierra show!! 

Oh!! I can't forget to share that Mom, Josh and I had the BEST time in Florida!! Much needed sunshine and relaxation :) Also, by now you've probably noticed that I did end up having to shave my head. I'm lucky to have a couple expert head shavers at my disposal ;)

Thank you for your diligence in praying for me as we take on a new city and a new treatment. I can truly say I don't think I could get through all of this uncertainty without your blanket of prayers and love constantly covering me. 

With love and gratitude, 

Sierra

November 17, 2022

Hi Team Z! I wanted to touch base with everyone today because I have been getting a lot of "how is treatment going?" questions. Unfortunately, that is a loaded question this time around, so I thought I'd clear things up here. 

My first round of this new treatment regimen was on Friday, October 28th. Although I was anticipating the first week to go smoothly, the drug I received this day is nicknamed "Gentle Gemzar" after all, this was actually not the case! On Saturday, I was extremely nauseas and ended up spending most of the day in bed. However, by 5:00pm I was out of bed and craving soup, which I ended up making by myself by scratch (this is not intended to make you feel bad for me, but rather so you can understand how much better I felt!)! On Sunday morning, I noticed that I was extremely itchy. Having never experienced this before, I didn't even consider that it might be from the chemo. I went to go take a shower and noticed a faint "sunburn" look on my skin, letting me know the itching must be from the chemo. The itching got progressively worse throughout the week and covered my entire body.

If someone would have told me before I started this treatment that it might make me itchy, I would've written it off as something very manageable compared to side effects I've experienced in the past. However, after experiencing 6 days of itching so bad my skin was bleeding, I would have to say it's maybe the worst side effect I've had. It's important to remember that on the 7th day (one week later), I receive another dose of the chemo. So, just when things START to feel better, I go through the whole thing again. I've tried many, many things to help with itching, ranging from traditional anti-itch and allergy meds (which tend to just make me sleep all day) to homeopathic treatments, both with no luck. Again, I'm not describing this to you so you can feel bad for me, but rather so you can understand why asking "how's treatment going" is a complicated question, and so that you know how you might specifically pray for me. This past week was my week off treatment, which allowed me to function as a normal human without going literally insane from itching. This week (tomorrow) I have another round of chemo, but we have a few new drugs we're going to try to help with the itching. Please, please pray that I might find some relief this week. 

Next week, unfortunately, I have treatment the day after Thanksgiving and then have to go in for a shot to boost my white blood count on Saturday. This does limit what my family and I are able to do over the holiday. My sister is coming home from New York, though, so I know we will find a way to make it special. Also, I'm VERY excited to be headed to Orlando, Florida on the Sunday following Thanksgiving with Josh and my mom! We're looking forward to a fun week-long getaway in the sunshine state! 

Looking forward a little further, I am scheduled to head to MD Anderson (Houston, Texas) on December 9th to get established with their clinical trial team and to have my first round of scans since starting this treatment. At that point, we will determine if I will continue with this regimen, or move forward with a clinical trial in Houston. Please pray that the doctors and I will have clarity when it comes time to make that decision. 

Although I don't have a lot of great pictures to share since my last post (most of this time was spent very itchy!!), I am thankful that I got to enjoy some time with my sister, who was home for a wedding during that time! I also had dinner with some of my volleyball teammates from Aquinas, which was the most special surprise! Please also enjoy a side-by-side of each of my "first day of chemo" photos... there are three of them at this point, all with very different amounts of hair! I also can't forget about the beautiful quilt that was delivered as a surprise from the Love Sews Ministry. I don't know who set that up for me, but the timing was absolutely perfect. I really, really needed that pick-me-up to boost my spirits and remind me that people are still praying for me every day. As a side note, I will share that my hair is in the process of falling out again. I'm a little torn at this point as to whether I want to shave it again or wait to see if it all falls out first. This chemo, unlike my very first regimen, is not a guarantee for hair loss... which makes it really hard to know when it's time to bite the bullet! So, you may or may not see photos of me with a shaved head in the next few days. 

As always, thank you for walking beside my family and me on this journey. We are so appreciative of all the ways you continue to support us from near and far. 

Remaining hopeful and fierce, 

Sierra 

October 27, 2022

Hello everyone! If you follow my Instagram (@sierrafightssarcoma), you know that the last few weeks have been full of set backs and plot twists. At this point, however, I think we have a new plan in place that I wanted to share with everyone (although who knows what changes tomorrow may bring...)

After my last update, my mom and I traveled to Cincinnati as planned for a preliminary appointment before starting the clinical trial. Our visit was really great; we loved the facilities at Cincinnati Children's, were very confident in the staff there, and I was as ready as you could be to begin a new treatment starting the next week. I had never received treatment at a children's hospital before and was very excited when they offered me snacks before entering the clinic! Everything seemed to be falling into place perfectly. On Wednesday, the day after we returned home from our appointment in Cincinnati, I received a very unexpected call from the clinical trial doctor. He explained that after looking over the blood work I completed in Cincinnati after my appointment with him, he noticed that my white blood cell (WBC) count is significantly below normal. This is likely a sign of chronic toxicity, a long term side effect from the many rounds of chemotherapy I've been through. Unfortunately, the clinical trial has very specific exclusion criteria, one of which is any indicator of long lasting toxicity, such as low WBC. With my WBC at 2.5 (the low end of normal is 4.0), I was technically ineligible for the trial. However, he was willing to recheck my blood work the following Monday to see if more time off treatment would elicit a better WBC count, they were hoping I could get to 3.0. 

I spent the days leading up to that Monday bloodwork appointment eating as healthy as you can imagine, taking new supplements to boost immune health, and refraining from public spaces where I might pick up germs. To all of our dismay, these efforts did not contribute to a higher WBC. In fact, my WBC went from 2.5 to 2.4 over the weekend. With that, I was informed by the Cincinnati doctor that I was ineligible for the trial. You can imagine how devastating this was for my family and me. As I mentioned in my previous update, this trial felt like the perfect next step for me based on the DNA testing I had done and considering it was within driving distance. Not only did we grieve the loss of this seemingly perfect opportunity, but this news also meant we were back in limbo, with no plan as to where to go next. 

So, back to the drawing board we went. Within the next few days, I was able to meet virtually with my oncologist from MD Anderson, Dr. Livingston. He presented us with a few treatment options for us to consider moving forward, one of which would involve me (and mom) moving to Houston for at least 6 weeks to receive treatment on a clinical trial at MD Anderson. The other option would be a standard chemotherapy regimen advised by Dr. Livingston, but administered locally. After many pros and cons discussions, and considering the urgency of getting me back on treatment, I opted for the local chemotherapy option. Because it is so urgent, my local oncologist (located in Lemmen Holton) is having me start treatment tomorrow (Friday, October 28th). 

Although starting treatment does put me at ease, at least I'm doing something to combat the growing cancer, starting another "standard" chemo regimen is not something I look forward to. In my experience, "standard" means toxic. New cancer treatments, often in the form of clinical trials, are thankfully becoming less and less toxic. But in the osteosarcoma world, standard means old, and old chemo is toxic chemo. I will let this paragraph serve as a plug for the need for new, less toxic treatments for osteosarcoma. 

The treatment regimen is a combination of two different standard chemo drugs, Gemcitabine and Docetaxel, both are often used to treat many different cancers. Docetaxel is pretty potent and will come with many unpleasant side effects, similar to what I've experienced before. However, as I've tolerated most of my chemotherapy quite well in the past, I am hopeful that my body will continue to serve me well in this sense. This regimen will not be a long term solution, however, the more time it keeps the cancer in my lungs from growing, the more time there is for new clinical trials to evolve and become available. We're anticipating doing 2 rounds (3 weeks each, 6 weeks total) of this regimen before doing another set of scans to monitor for growth. During that time, Dr. Livingston will work on developing plans A, B, C, and D for me in Houston so that we're ready for next steps when they're needed. 

So, tomorrow I will head back to Lemmen Holton where my cancer journey began... cue the PTSD. I absolutely don't want to do this, but I know that this is the next best thing for me right now. So, I will put myself back into "fight mode", be fierce and go forth. Please pray for my mental health, as this has been and continues to be an extremely long, hard, unfair battle. Please pray for my physical health, as I'm not sure how much more chemotherapy my body can handle at this point. Please pray for my family as they cheer for me and support me from the sidelines, which can often feel like a helpless job. 

To leave this on a positive note, I will share some fun memories from this past weekend. My mom had already taken off 3 days of work so that she could accompany me during the anticipated treatment at Cincinnati Children's (yes, that's how close we were mentally and physically to getting started on that trial). Because plans changed, we were extremely disappointed, and we needed a pick-me-up, we decided to use that time for a mini getaway in Chicago. We had so much fun together and even got to stay in the city for an extra night when mom lost her keys! ;) 

Thank you for keeping my family and me in your thoughts and prayers tomorrow and in the days that follow.

Remaining hopeful and fierce, 

Sierra

October 11, 2022

Hi Team Z! I'm coming to you from what is apparently the last 70 degree day until next year... am I the only one who feels weirdly obligated to spend every second of the day outside when they hear that? Anyway, it's been a minute since my last update... but only because I've had nothing to share! This week I finally have some definitive updates that I feel comfortable sharing. 

Last time we spoke (over a month ago already!), I was in the midst of contacting doctors and making appointments to discuss the best next steps in my treatment. As I mentioned in my last update, I had DNA testing of my tumor done, which provided me with recommendations for treatments that specifically target my tumor's DNA. Using that information, both Dr. Schuetze (UofM) and Dr. Livingston (MD Anderson) agreed that the next best treatment for me is a clinical trial which utilizes a new treatment, called a WEE1 inhibitor, paired with a tried and true chemotherapy, called Gemcitabine. It is always a good feeling when both my doctors, without having even communicated with each other, agree on the best next step for me. Although this trial is offered at MD Anderson, the exact same trial is also offered at Cincinnati Children's Hospital. As I'm located in Grand Rapids, moving forward with the trial at Cincinnati Children's made a lot more sense for us logistically. 

After the conversations with my current oncologists, Dr. Schuetze and Dr. Livingston, I immediately contacted Cincinnati Children's to inquire about the trial. To my surprise, I got a call from the head oncologist on the trial that same day. He told me originally, that things would move pretty quickly; I would need to come to Cincinnati to get established as a patient within the next few weeks. However, we found out shortly after that that because of a few set backs, the trial would not open until late October. That news was a little discouraging, as it was early September at the time. Waiting 6 weeks to start another treatment seemed risky. Because this trial remained the best option for me scientifically and logistically, we decided it would be worth the wait. I continued taking my oral chemo therapy (one of the drugs from my previous clinical trial) to maintain tumor growth as much as possible during the 6 week wait. However, last week I received communication from Cincinnati Children's for the first time since they told me about the postponed trial start date. They were happy to inform me that the trial would be starting next week (this week)... two weeks earlier than anticipated! So, that brings us to this week! 

Tonight (October 11th), my mom and I will drive down to Cincinnati for a 8:00am appointment with my new team at Cincinnati Children's. This appointment will consist of a few different preliminary tests, as well as signing of consent forms... overall a long way to drive for a couple hours of checking boxes! Next week, I will officially start the trial. Although I don't have a lot of information yet, I do know that we will be in Cincy for three days, and I will stay over night in the hospital one of those days. During the first cycle (first 21 days), I will have appointments weekly. After that, I will only have appointments every other week. Although this does end up being a lot of driving, we're thankful that it's a drive and not a flight (holding back comments about the price of gas...)! 

Although being "in limbo" as I waited for this trial to open was a bit anxiety inducing, it did allow me to enjoy a lot of freedom that I'm not used to! I haven't met with an oncologist since the beginning of September and that felt amazing. Per usual, I've stayed busy! My family and I have thoroughly enjoyed our new cottage and have spent most of our weekends there. In September, Aquinas (my alma mater) hosted a volleyball game in my honor! We called the event "Saints Against Sarcoma" and it was completely dedicated to raising awareness and funds for osteosarcoma during Childhood Cancer Awareness Month. I got to serve the first ball of the game, which was such an accomplishment for me (my first serve since Limb Salvage Surgery!)! I also had the opportunity to be a guest on a podcast! The Australian based non-profit organization "T2ko" (Time to Know Osteosarcoma) invited me share my story on their founder's podcast, which was such a cool experience. Check it out by searching "Talkin Wac with Zac"! :)  Last week, Josh and I, along with our besties Scott and Rachel Zokoe, traveled to Traverse City for our 3rd annual fall trip! We enjoyed wine tasting and taking in all the fall beauty. 

As I prepare to start another treatment, I have so many emotions. I'm excited to get started with a treatment that is designed to fight my tumor's DNA. I'm hopeful that this might be the treatment that keeps my cancer at bay. However, I'm also dreading starting another treatment. Like I said, I've really enjoyed the little "break" that I've had while waiting for this trial to open. Losing my freedom again is upsetting, especially because this is my first treatment that will require extensive travel and an over night in the hospital. Please pray for my family and me as we manage all these emotions. Pray for safe travels for my mom and I, peace for Josh and the rest of my family in our absence, and overall well-being for me as I take on some new drugs. Thank you, from the bottom of my heart, Team Z. 

With love and gratitude, 

Sierra

September 2, 2022

September already?! I always dread the end of summer, and this year is no different! It seems like it came so quickly! As you may already know from my social media outlets, I have some news to share about my latest scan results. 

My most recent scans took place on August 19th and we met with my doctor to discuss results on August 23rd. I was more nervous for the results of these scans than I've ever been, knowing that any sign of tumor growth might indicate the end of the clinical trial. With no plan for treatment beyond the clinical trial, we were very nervous about the unknowns that may lie ahead. On the 23rd, my oncologist informed us that according to the radiologist at UofM, my cancer looks stable, meaning there is no growth. However, because of the guidelines of the clinical trial, they would also be sending the images to "central radiology" again, who would very meticulously measure each nodule. In the eyes of a general radiologist at UofM, 1 or 2 millimeters of tumor growth is considered "stable" because that growth is so minimal. However, when you're on a clinical trial, every millimeter adds up. "Central radiology", specialized radiologists for the clinical trial, measures each nodule and averages the growth, finding a percentage of growth from the start of the trial. So, although we wouldn't know for sure if my tumors truly were "stable" in the eyes of central radiology until later, they did allow me to move forward with my treatment on August 23rd, receiving another cycle of the immunotherapy and another prescription refill of the oral chemotherapy drugs. As my doctor put it, we were cautiously optimistic that things would be fine. 

Although I checked my MyChart account everyday (multiple times a day) looking for some kind of update, I didn't hear anything until August 29th... Josh's birthday, believe it or not. Rather than a message in MyChart with news from central radiology like I got last time, I got a call from my main oncologist, Dr. Schuetze. As soon as I saw his name on my caller ID, I knew it wasn't going to be good news. Dr. Schuetze explained that the trial guidelines allow for 20% of tumor growth overall from the start of the trial, and my tumor had grown 28% according to their measurements. This news meant that I would no longer be able to remain on the trial. Although this was extremely disappointing, he did have some good news that offered a little comfort. On that same day, August 29th, Dr. Schuetze also received a report from the DNA testing we ordered using tumor specimen retrieved from my lung biopsy. This report breaks down the entire DNA sequence of my tumor and suggests targeted treatments based on my specific sequencing. So, although I'm not able to continue with this clinical trial, he was able to present me with a few different clinical trials that are testing drugs that specifically target my tumor's DNA. This information allowed us to absorb the bad news with a new hope for the future; although this treatment wasn't the one for me, there's hope that we will find the right one.

As all of this information is still very fresh, we have not made any decisions about next steps as of today. In fact, I'm still trying to make appointments to talk to my doctor at MD Anderson about his opinion on next steps! One thing we are quite sure of, however, is that regardless of the treatment plan we choose, there will be significant travel involved. The University of Michigan is not offering any more trials for osteosarcoma patients as of now (although we're hopeful that all the money Team Z raised at the Stomp Out Sarcoma event will fund a new trial soon!). We're not looking forward to letting go of the convenience of driving only two hours to receive treatment (if you can consider a two hour drive convenient?). 

In an effort to end this post on a light-hearted note, let me share a few fun updates about what I've been up to over the last month! Josh and I celebrated our 5th wedding anniversary by taking a trip to The Soo! We enjoyed exploring the town and kayaking next to some pretty massive freighters! After returning home from The Soo, my mom and dad surprised me with a "glamping" sleepover party to celebrate earning my Masters (we love a theme and literally any reason to have a party ;) )! My mom, with the help of Little Dreamers Sleepovers, set up the most adorable yurt/tent for us to sleep in, which was completely decked out in yellow! What a blast! Last weekend, my family and I spent our first weekend at our brand new cottage! We are so excited to have a spot to get away and make memories together. Our first weekend was a blast; we celebrated Josh's 31st birthday! This weekend, I'm looking forward to spending Labor Day with the Zylstra Fam in Traverse City! We have a spooky tour of The Commons planned, which I am really looking forward to! 

As my family and I continue on this journey, the battle doesn't seem to be getting any easier. We can't thank you enough for continuing to walk the journey alongside us, encouraging, praying, and loving us each step of the way. We feel your prayers and will continue to be fierce and go forth. 

With love and gratitude, 

Sierra 

August 3rd, 2022

Hi there Team Z! Long time no see!! I found myself writing the date today, August 3rd, and I can't believe it! This summer came and went so quickly! As fall begins to approach (boo!) I wanted to update you on what I've been up to, my next scan date, as well as my plans for the fall... 

Josh, my family, and I have remained very busy this summer! After we returned home from Italy, we packed our bags again just a few short weeks later for a relaxing week on Torch Lake. This is one of our favorite weeks of the summer; we've been taking this Up North summer vacation week since I was in high school! I also had the opportunity to spend a long weekend with some friends on Burt Lake last weekend! We ended the month of July by participating in the Stomp Out Sarcoma 5k, an event that raises money for Sarcoma research at the University of Michigan Medicine Rogel Cancer Center (where I receive all my treatments!). All of the money raised at this event directly funds clinical trials like the one I'm currently participating in, which is such a blessing for Sarcoma patients like me who are still looking for the right drug(s) to keep their cancer at bay. Our team, "Team Z" obviously, was able to raise over $8,000, which is the most any team has ever raised for this event! That is a huge testament to my amazing support system! Although I did post about this event on Facebook a few times, I had a few people say they wish they had known about it so they could participate. If this was you, no worries! My family and I plan to make this event a yearly thing for us; you can join us next year! We can't think of a better place to donate time and money... not many other fundraisers (if any?) directly impact my future treatment options! 

At my last doctors appointment, we officially scheduled my next round of scans. Mark your calendar for August 19th! These scans are extremely important, as they determine if I will continue moving forward with the clinical trial. You might remember that my last round of scans weren't very decisive, they showed growth in my lung nodules, but doctors determined after careful review that the growth was within criteria to be considered response to immunotherapy. Because of the uncertainty we were left with after those scans, we are really unsure about what these scans will show. We are extremely hopeful that they will decisively show a positive response to immunotherapy this time, results that makes us feel confident in moving forward with the trial! 

You may remember from my last update that I was dealing with some complications with my thyroid (hyperthyroidism), but wasn't able to get an appointment with an endocrinologist until October. By the grace of God, a friend read that last blog post and was able to use her connections to get me an appointment with an endocrinologist in Grand Rapids just a few weeks later! By the time that appointment came around, my HYPERthyroidism had already turned into HYPOthyroidism, which is apparently very common for patients going through immunotherapy. Although the hypothyroidism caused me to gain back the 10 pounds I had lost from the hyperthyroidism and then some, the good news is hypothyroidism is much easier to treat than hyper. I started taking a new drug to monitor my thyroid activity, and I have been much better since! 

I've recently had quite a few people ask if I plan to return to working as a teacher this fall. In my head, the answer to this was obvious, which I why I hadn't officially said anything. However, I'm coming to realize that just because this is obvious to me, doesn't mean it's obvious to others. With the consult of my doctors, I made the decision earlier this summer to remain on Long Term Disability through the 2022-23 school year. There are many, many reasons for this decision, but here are the main reasons. As I'm currently living scan to scan in two month increments, planning for the future is impossible. Let me put this into perspective, if my next scans show that the clinical trial is not working, I will be forced to end the trial and search for a new treatment plan. Likely, as there are currently no more trials at UofM that I am eligible for, this will mean starting a trial at MD Anderson (Houston, Texas). This uncertainty of the future makes it hard to commit to any job, but especially one that requires intense future planning and so greatly impacts the lives of kids. Another reason I can't return is because of the logistics of my day to day schedule. Throughout each week, I have multiple important appointments with a number of different doctors. Logistically, I cannot commit to anything that requires my consistent, day-to-day presence. If you know me, you know this decision did not come easy. I love, love, love my job and the people I work with. I also love being productive, feeling purposeful, and impacting the lives of others. Not to mention, I just finished my masters in Educational Leadership! Cleaning out my classroom this summer was devastating for me. However, I remain hopeful that I will be able to return to the classroom at some point. 

As we get closer to another scan day, we ask that you might pray for peace and comfort for my family and me. We know the future is not ours to worry about, but this is easier said than done. Most people have a 5 year plan, some even have a 10 year plan! For us, planning for next month isn't within reach. As you can imagine, this is extremely difficult, especially when the stakes are so high. We are so appreciative of the ways you continue to wrap your arms around us, even after over a year of dealing with this horrible cancer. We appreciate your love, encouragement, and prayers more than you know. 

With love and gratitude, 

Sierra 

June 30th, 2022

Hi Team Z! I am so surprised by how many of you remembered I had scans this week even without a reminder post from me! I am so appreciative of all the love and support my family and I received from near and far as we awaited results. The scans showed that the nodules in my lungs did grow slightly. My doctors were unsure if the growth was a sign of the immunotherapy working, or if it was just regular progression of the tumors. Immunotherapy stimulates the production of immune cells to locate and destroy cancer cells. When the immune cells find the cancer cells and attach to them, the tumor grows (cancer cells + immune cells = bigger tumor). Although my doctors were aware of this process, they were concerned that the growth seen in my scans was more than just immune cells. However, after having "central radiology" look more closely at the scans and measure the nodules very meticulously, they determined that the growth was still within criteria to be considered response to immunotherapy. With that confirmation, I will get to remain on the trial and have more scans in 6-8 weeks! This is very exciting, as having to end the trial would have left my family and me with many, many unknowns. We hope I can remain on the trial as long as possible, so this was a huge blessing!

In my last post, I spoke about the random and inconsistent side effects I had experienced thus far from the clinical trial drugs. Almost immediately after that post, I ended up in the emergency room with throat pain and a high fever lasting 4 days. They determined in the ER that I have developed hyperthyroidism (an overactive thyroid) as a side effect of the immunotherapy. The pain I was experiencing in my throat was my very swollen and irritated thyroid. Hyperthyroidism is very tedious and can't be overmedicated, as it will then turn into hypothyroidism (the opposite problem). The only thing I can really do is manage the side effects and hope that it works itself out. One of the side effects of hyperthyroidism is weight loss, so I'm working really hard to maintain a healthy weight (I had lost about 10 pounds without even knowing). My doctors have requested guidance of endocrinology to keep an eye on my thyroid, but unfortunately their first available appointment is in October! We're keeping our fingers crossed that they will be able to get me in on a cancelation before then. 

Other than the hyperthyroidism, the side effects of the drugs remain very manageable. In fact, if you haven't already seen my photo blasts on social media, I was able to do a very ambitious tour of Italy with my mom and sister last week! We managed to see 5 cities in 7 days; Rome (only for a night due to flight complications), Venice, Lecce, Gallipoli, and Catania (Sicily). There were certainly some difficulties (lots of stairs, uneven cobblestone roads, finding food to meet my nutrition needs, etc.), but we had an amazing time and I am so grateful I was well enough to enjoy this adventure. Prior to my Girl's Trip in Italy, I enjoyed another amazing adventure in Yellowstone with my traveling besties! Another place that absolutely took my breath away.  I'm hopeful for many more of these adventures in the next two months! 

Another thing I mentioned in my last post was that I had a lung biopsy that week. Unfortunately, the results from that biopsy were "benign", which sounds exciting, but really just means they missed the nodule and picked up regular lung tissue! That was a huge disappointment, because they were supposed to send the sample out for DNA testing so that we might learn the most appropriate treatment options for my specific tumors. Because the DNA testing is important to me, I opted to try for another biopsy, which I had today. Unfortunately, I ended up with a pnuemothorax from this biopsy, meaning the hole they poked in my lung leaked a little air into the area surrounding my lung (this can cause the lung to collapse if not treated properly). It is a relatively small pnuemo, so luckily I was able to come home to let it heal itself with some rest. Fingers crossed it does get better on its own because I have had a pnuemo before that required a chest tube to correct, which was extremely painful. 

At the end of the day, I am elated that I can remain on the clinical trial and enjoy two months of freedom (sort of, with my biweekly doctor visits anyway)! In a couple weeks, I will be on Torch Lake with my family, which sounds like the most perfect way to celebrate my born again freedom! 

Oh! I can't forget to mention that I finished my Masters coursework! My diploma is on its way, and I am officially Sierra Zylstra, M. Ed. 

As always, thank you from the bottom of my heart for keeping me close to your heart and in your prayers as I keep on keepin on down this long and jagged road. For the next two months, our prayer is that the drugs are doing their job and are destroying the cancer cells in my lungs. Hopefully, the next time I have scans it will be more conclusive that the drugs are working to destroy the cancer cells.

With love and gratitude, 

Sierra  

May 26th, 2022

Hello all! I am officially in my fourth and final week of my first cycle of the clinical trial, so I thought it might be time to update everyone on how things have been going! So far, I have been tolerating the drugs really well. I have noticed that I am more easily fatigued, but other than that the side effects have been very minimal and inconsistent. Sometimes I experience dry eyes and a sore back, but we're not even sure if those things are related to the drugs. I am extremely happy that I have not yet experienced hand/foot sores or hair thinning, however both of those side effects tend to occur over longer periods of time on the drugs. 

This week I had a lung biopsy, which is a standard procedure for those participating in the clinical trial. The sample obtained from the biopsy will be used for research as well as for DNA testing. DNA testing of the cancer sample can help my doctors have a better understanding of what kinds of treatments will be most successful for me. 

Next week I will start my second cycle of the clinical trial. Every cycle starts with the immunotherapy infusion on Day 1 in Ann Arbor and then the remaining days (2-21) are the oral chemotherapy, which I take at home. During the second cycle, I will only have to go to Ann Arbor every other week for blood work and check-ins with my doctor (during the first cycle I had to go back every week). After this second cycle, I will have a chest CT to monitor how things are going. The CT is scheduled for June 28th.  

Because the second cycle only requires my attendance in Ann Arbor every other week, we were able to plan some fun getaways during the off-weeks! First, Josh and I are visiting our world-traveling, van-living, besties in Yellowstone! We are so excited to see them (they've been gone for two months!) and we can't wait to explore Yellowstone! Then, toward the end of June my mom, sister, and I are traveling to Italy! We are excited to go on another girls trip, as we haven't been able to since before COVID! We will be staying in Rome, Venice, Sicily, and Lecce. 

Many of you know I celebrated my 28th birthday at the beginning of this month! I had the best time celebrating with family on my birthday, and then with lots of friends at my "yellow everything" party last weekend. Your girl loves a good theme, especially when I can bring it back to sarcoma awareness :) 

Thank you for your continued love, prayers, and support. Living with a cancer diagnosis isn't easy, but when you're surrounded by so, so much love it definitely makes it more bearable. 

With love and gratitude, 

Sierra

May 1st, 2022

Hi there Team Z! For those of you who don't already know, I will be starting the clinical trial at UofM this week Tuesday (May 3rd), so I wanted to send out some details I learned about the trial when I met with my doctor. 

The trial uses a combination of two drugs, Regorafenib (oral chemotherapy) and Nivolumab (immunotherapy). Regorafenib is a chemotherapy used occasionally for osteosarcoma patients, but they're hoping the addition of the immunotherapy will make the Regorafenib more effective in maintaining osteo. The drugs will be given in 28 day cycles (4 weeks):

Day 1: Nivolumab immunotherapy infusion in Ann Arbor (1 and a half hours, what a relief!)

Days 1-21: Regorafenib oral chemo therapy (taken as a pill) at home

Days 22-28: Break from chemo pills

During the cycles, I will go back to Ann Arbor once a week for the first cycle and then every other week for the remaining cycles to get blood work done and to meet with my doctor. The goal is to do 5-6 cycles total, however if we find that the side effects are intolerable or that it's not working we will end the trial. I will have a CT scan done after 8 weeks (the end of June) to see if the trial is working. If the CT scan shows that my lung nodules are growing, we will end the trial. If things look good, we will continue as long as it keeps working. We learned that this clinical trial is being studied in 26 different locations, UofM being one of them. UofM is only taking 4 participants though, and so far they've only acquired 2 (including me!). So, I feel really fortunate to have a spot in this important study!

Because the first cycle requires weekly check-ins in Ann Arbor, I will be pretty homebound for the month of May. However, we're hoping to squeeze in some traveling during the month of June in between the every other week check-ins. Nothing is booked yet; we need to see how I will tolerate the new drugs first. The most common side effects are hand and foot sores/blisters and fatigue. Another potential side effect is hair thinning, but not complete hair loss. I've already purchased a few products recommended by a friend who was on Regorafenib for awhile, so hopefully those will help keep most side effects at bay. 

This coming week will certainly be a very busy one, but mostly because it's my birthday!! I have always been a big birthday person, but I love them even more so now that my life has been put into perspective. On Wednesday I will celebrate my 28th trip around the sun! 

Thanks for keeping my family and me in your prayers always, but especially on Tuesday (May 3rd). We are so hopeful that this clinical trial is successful and will become a much needed maintenance drug for me and other osteosarcoma patients who have inoperable tumors. Although it's depressing and annoying to go back on treatment, it is empowering and exciting to be a part of something that could make such a difference for the cancer community. 

With love and gratitude, 

Sierra

April 19th, 2022

Hi Team Z! Happy Easter and happy Spring (maybe?)! Unfortunately, during this season of hope, growth, and sunshine, we received some not so great news last week. Many of you already know that my CT scan results were not what we were hoping for. If you're not on social media and/or haven't heard the results yet, here's the gist: my scans showed that my osteosarcoma has started to grow again. My doctor put it this way, "Your osteosarcoma is starting to wake up." This was extremely heartbreaking for us to hear, even though we knew it was probably going to happen at some point. We had high hopes for this round of scans, so we were really crushed. 

After taking the opinions of both my doctors (UofM and MD Anderson), we've decided my best treatment option right now is to join a clinical trial that is being offered for osteosarcoma patients at the University of Michigan. The trial involves a combination of two drugs. The first drug is an immunotherapy infusion drug called Nivolumab or Opdivo. This infusion will be done in Ann Arbor and is a one hour drip once every three weeks (sooo much better than the 8 hour drip for three days in a row I did during my last chemo regimen).  The second drug is an oral chemo (taken as a pill) called Regorafenib or Stivarga. After 8 weeks of this regimen, I will have scans to see if the cancer is stable. If the cancer is stable (meaning it hasn't grown), then I will continue with the regimen for as long as it works. If not, then we will end the trial. Both of these drugs are standard chemo drugs that have had some success on their own (very successful for other cancers); the clinical trial is based on research that found the combination of the two drugs may be more impactful for osteosarcoma. 

After talking to Dr. Livingston, my doctor from MD Anderson, we feel a lot more hopeful and optimistic, as he explained the many options I have moving forward. Although it sucks to have to go back on treatment, it is good to know that there are many, many treatment options we can try if this clinical trial isn't successful. The strange thing about osteosarcoma is that a treatment that works for one patient doesn't always work for others. The cancer behaves differently in different people. With that being said, this phase of my treatment will be a bit of trial and error until we find the best treatment for me. Dr. Livingston actually described the position we're in as "the sweet spot"; now that we know exactly how my cancer is behaving (all of the nodules are growing as oppose to just a few), we know what treatment options make the most sense. 

On Thursday (April 21st), I will be headed to Ann Arbor to go over more details regarding the clinical trial and to have a few screening tests done. Hopefully, I will be starting the clinical trial within the next few weeks. I anticipate the side effects from this regimen to be more bearable than my last regimen, although you never really know how your body will react. 

At first we were all very sad, as we essentially grieved the loss of what was starting to feel like normal life. At this point, I've transitioned from sadness to what I call "fight mode". Your body does very interesting things to protect you when going through traumatic events such as a cancer diagnosis. One of those things, for me anyway, is putting me into fight mode. In fight mode, my brain focuses on keeping me strong and healthy (physically and mentally) rather than focusing on the sadness of it all. A lot of times this comes out in my humor! It's very hard to explain this feeling; I just say thanks brain, and thank you God for designing us to be such intricate beings! 

Thank you so much for continuing to pray over my family and me as we process this new information and transition back to fight mode. After a year of dealing with this, we are still amazed by the number of people who show up for us when we need it. What a blessing it is to feel so loved. 

With love and gratitude, 

Sierra 

April 1, 2022

Hello all! It has been awhile, and I have certainly been living my best life since my last post! After my last scans came back "stable" I was able to start planning for some upcoming trips and activities I had been anticipating. I know many of you knew I had big plans, so I wanted to share how everything went! 

Over the month of February, I got to see 3 Broadway shows! First, Josh and I decided last minute to see Frozen on Broadway in Lansing. It was fabulous! After that, We saw Hamilton in Grand Rapids, which was everything I had hoped for! Then, my mom and I visited my sister in New York and the three of us saw Wicked! This was my second time seeing Wicked, and it's still my favorite show! During the month of February, I was also honored in THREE different cancer sporting events. Will Shults, a friend from church, honored me in his basketball game, a former student honored me in his Hockey Fights Cancer game, and a Byron Center colleague honored me as the head coach of the basketball team in the BC Bite Cancer game. I was extremely humbled and honored to be chosen by these people, and to represent the osteosarcoma community in these events.

During the first week of March, Josh and I joined my parents on my dad's work trip to Punta Cana, Dominican Republic! We had such an amazing time soaking up the sun and fully enjoyed the all-inclusive life. My favorite day was when we took a boat trip to a small island off the coast of the Dominican Republic; we got to soak in the bluest water I've ever seen! 

During the last week of March, Josh and I traveled to Iceland; we just returned home on Wednesday evening! Iceland is a destination that became apart of my "bucket list" after I was diagnosed... I came to the realization that more than anything I really wanted to see the natural wonders of the world, the beautiful things in God's creation. Iceland seemed like the perfect place for this, and it certainly was! Over the 10 days we were in Iceland, we saw mountains, hiked a lava cave, explored Reykjavik city, saw multiple waterfalls, rode Icelandic horses through mountain valleys, watched a geyser explode, walked along a black sand beach, swam in two different geothermally heated hot springs, and hunted for whales and the northern lights (both with no luck!). What an adventure! This trip gave us an inch to travel more; we can't wait to see more beautiful sights across the world! 

You may have noticed that it's been almost three months since my last post. This means it's about time for my next round of scans. My next scans will be on April 12th at 1:00pm; I will meet with my doctor to get the results of the scans on April 14th at 5:30pm. This time, I will only have a CT scan of my lungs to check the activity of the cancer. We are very hopeful that the cancer remains inactive so that we can continue to go on worldly adventures for the next three months. As this date approaches closer, you might begin to pray for peace for my family and me, as these scans continue to hold a lot of weight. It might seem like it would start to get easier as I begin "getting used to" living with cancer and being scanned every three months. However, I would argue that it actually gets harder. The longer I am off treatment, the more "normal" I start feeling; it becomes easy to forget I still have cancer in my body that could become active again at any time. Having to go back on treatment at this point would be devastating, because it feels like I'm just starting to get my life back. Please pray that this cancer remains stable, or inactive, for as long as possible (forever?!). 

Many people have asked when and if I plan to go back to work. At this time, it was determined by my doctors to be in my best interest to remain at home for the remainder of this school year. However, I am really hopeful that I will continue to have stable scans through the summer and will be able to return to work next school year. Of course, I will still be getting scans every three months at that time, but after 8 months of stable scans (potentially) I hope to feel more confident in making long term commitments and choices. 

Thank you all from the bottom of my heart for continuing to follow my journey and support my family and me through your love and prayers. We continue to feel extremely blessed by the amount of people who have shown up for us. 

With love and gratitude, 

Sierra 

P.S. Isn't it fun to watch my hair grow over the last three months in the pictures?!

January 21st, 2022

If you haven't already caught wind of the news, we are so happy to report that we received GOOD NEWS from my doctor last night! The chest CT scan showed no signs of growth in my lung nodules, some have even shrunk in size! My largest nodule shrunk by 2mm! There are also no new nodules. The X-ray of my leg was also clear... lots of hardware but no cancer! 

We are so incredibly elated with this news! We also couldn't be more thankful for all the people who prayed for me, sent positive vibes, and were just thinking about us all day. We absolutely felt the love. For the most part, we were very calm leading up to the appointment. I slept well both nights leading up to scan day and result day. We totally felt God wrapping his arms around us! I am 100% positive there are more people praying for me than I even know; it's so incredibly humbling and reassuring. Thank you, Team Z, from the bottom of our hearts. 

My next round of scans will be in early April (no date yet) and we plan to live BIG between now and then. What I'm learning, is the only thing I can control is how I live my life between scans. I work hard on my physical health by nourishing my body and working out. I work on my mental health through frequent visits with Dr. Porter (my amazing therapist who works solely with cancer patients) and by staying busy! Here's to 2 and a half months of living life to the fullest! 

With love and gratitude, 

Sierra 

January 4th, 2022

Happy New Year Team Z! I am happy to report that Josh and I had a fabulous holiday season. We were able to get together with both of our families over Christmas (thankfully after COVID testing before hand, no one tested positive!). We went skiing with my family just after Christmas (this was a goal of mine after my surgery, I did it!!). Over all, we were completely overwhelmed by people's care and generosity toward us, and now have many fun trips to look forward to! 

As promised, I wanted to update you all on the date of my scans, which are taking place this month. On January 18th I will have a chest CT scan to look at the nodules in my lungs. Our prayer for this scan is that the nodules remain stable, meaning they show no signs of growth. If this is the case, I will remain in the "watch and wait" phase of my treatment. Just as a reminder, if the scans show growth, the next steps moving forward differ depending on how many of the nodules have grown. If only a few have grown, I could potentially have surgery to remove just those few. If many have grown, I will likely go back on chemo of some sort, which may involve a clinical trial. 

On January 18th, I will also have an x-ray of my left leg (what I now call my "fake leg" to help keep them separate :) ) to look at the site of my original tumor. Our prayer for this scan is that there is no sign of reoccurrence in that spot. Although there is no real bone remaining in that area, there is a potential for the cancer to come back in the surrounding bones that remain.

Of course these scans hold a lot of weight; they're probably my most important scans to date (first scans being off chemo). With that comes a lot of anxiety. We also ask that you pray for our mental health as the date nears closer. Please pray that we might cast our anxieties on Him and find peace in the weeks ahead. 

After I was diagnosed last winter, I started realizing that more than anything I just wanted to travel and see all the amazing things in God's creation. I told everyone that for Christmas, I wanted experiences! Well... the people listened! We have some very exciting things to look forward to in the coming months.... Next week, my mom, Josh, and I are headed to Orlando! We're excited to soak up some sun for the week. In February, Josh and I are super excited to see Hamilton on Broadway in Grand Rapids! If you follow my journey on Instagram, you know that we already attempted to see this show in Buffalo, New York last weekend. This was Josh's gift to me this Christmas. However, the show was cancelled on Saturday night (the night before) after we were already in Buffalo! To our surprise, the sweetest angel of a woman from our church bought us two tickets to the February show in Grand Rapids and dropped them off at our doorstep yesterday! We are so thankful and excited! Fingers crossed this one doesn't get cancelled! In March we are thrilled to be headed to the Dominican Republic with my parents! This trip was a Christmas gift from my parents that I will never forget! Josh and I are also hoping to use money that was very generously gifted to us this Christmas to visit Iceland this spring. Again, I just want to see the beautiful things in nature, so we're thinking what better place than Iceland?! We haven't planned this trip yet, because we want to wait for the results from my scans first.

Having cancer sucks, especially when it's Stage 4. However, I can truly say that I've never felt more gratitude in my entire life. The way that people have rallied around my family to help us get through this has been the biggest blessing. I don't know how we would manage without all of you taking us by the hand and saying "we've got this." Thank you from every ounce of our being.

With love and the most gratitude, 

Sierra <3

November 22nd, 2021

Hello everyone! Happy Turkey Week! My mom and I are currently in the process of planning a sugar free, dairy free, gluten free Thanksgiving meal. Believe it or not, it can be done! I've been getting lots of questions recently regarding how I'm doing, so you know what that means... time for an update! 

I have now been off chemo for 4 weeks, which means I'm feeling great and more like myself than I have in awhile. Although I don't have any hair growth YET, I'm looking forward to seeing some stubble hopefully soon! I'm also happy that I can start to make some real gains in strengthening my leg at physical therapy now that I don't have chemo to weaken my body every three weeks. We've also had the opportunity to do some pretty fun things on my time off (see photos). I visited South Haven with Josh, went to Chicago with my mom, attended the Michigan vs. Michigan State game, and I got to get back into singing in church! I also have restarted my Masters program, which I took a leave of absence from when I was diagnosed in February. Despite all the good things being off chemo allows me to experience, it is a really strange feeling not receiving chemo. It's scary to think about what could be happening in my body now that I am off treatment. 

Speaking of being off treatment, the question I get most often is "What's next?" This is an extremely loaded question. You might recall from my last update that I'm living in a space of only focusing on the next thing; I can't think too far in advance because there are still so many unknowns. So, for right now, the next thing is my next round of scans which will take place in January (no date yet). After speaking with Dr. Livingston (MD Anderson) last week, we learned that their thoracic surgeons do not see surgery as a feasible option for me right now. Because there are so many nodules in my lungs, taking them all out would leave me with very little regular lung function remaining. It's important for us to consider the quality of life that a surgery of this magnitude would leave me with. Some things I enjoy most in life are being active, walking my dog, going for hikes, etc. I would be devastated if this cancer took even more enjoyable things from my life, especially when the surgery isn't even guaranteed to completely rid me of the cancer. Instead, Dr. Livingston and the surgeons at MD Anderson would like to see what the CT scans show in January and make decisions about next steps from there. Right now the nodules in my lungs are inactive, but they likely will become active and start growing again at some point. If the scans show no growth, then we will go another couple of months and rescan. If the scans show growth in a few nodules, then we will consider treatment to just those that are growing (potentially surgery or radiation). If all of the nodules are showing growth, then we will have to go back on a chemotherapy of some sort. This will most likely be a clinical trial. We do have an appointment to meet with a thoracic surgeon at U of M, but I anticipate that his thoughts will be very similar to those of the surgeons at MD Anderson. 

So... to answer your question... what's next? What's next is what's called a "watch and wait" process. Again, we're living in the ultimate space of unknowns. Our prayer requests have shifted as we understand and accept that surgery isn't what's best for me at this time. Instead, we pray that we might be granted peace and patience during this time of "watch and wait". We also are praying for a miracle! There is a very small chance that the nodules in my lungs never become active again. This would obviously be the best case scenario for me... it would mean no surgery and no more chemotherapy. I don't anticipate that this will be the outcome (I'm not being negative here, just realistic); however, I'm holding on to God's promises tightly: “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened." Matthew 7:7-8

My family and I plan to keep this "watch and wait" time very busy to keep our minds at ease. One trip we have planned is a ski trip to Boyne Mountain over Christmas break. I'm super excited for the opportunity to try skiing again! I loved skiing prior to my surgery so I'm hoping this is one thing that I will still be able to enjoy since my surgery. We also have a trip to Orlando planned in January. We're excited to soak up some sunshine and maybe (*maybe*) visit Disney.  

I can't thank you enough for your continued support, prayers, encouragement, and love during what has proven to be a longer process than we originally anticipated. As the holidays approach, I am thankful to have time to enjoy with my family without having to worry about chemo. Likely, I will not have any updates until my scans in January, other than maybe reporting the day of my scans once they're scheduled so that I can have some extra prayers on that day. So, Happy Thanksgiving and Merry Christmas! I am thankful for YOU! 

With love and gratitude, 

Sierra 

October 25th, 2021

Hello Team Z! It has been awhile since I've shared any updates, but it has come to my attention that ya'll want some! HA! I understand, and appreciate your want to pray for me as specifically as possible. It means the world. So... here we go! 

The week after my last update, when we received the really positive news about my PET scan, we met with Dr. Livingston (virtually), the MD Anderson doctor. He was equally as pleased about my PET scan results, and even noted that the inactivity in my lungs was what they would expect to see in a person without cancer! Of course, the cancer is still there, but it is all being tamed by the chemotherapy. I then inquired about what next steps will look like for me, knowing that Round 6 (the one I just completed) would be my "last round" of chemo. Dr. Livingston mentioned a few different options; we could take a break from chemo for awhile, we could get started with some clinical trials, or we could talk about surgery. I explained to him that I know the only way I can get back to "normal life" is by having the nodules in my lungs surgically removed, so surgery is the route I want to go. Dr. Livingston then explained that, given the number of nodules in my lungs, he's not confident there will be any surgeon who will be able to remove them all safely. Although we truly appreciate Dr. Livingston's honesty and willingness to speak candidly with us, this news was extremely heartbreaking. It felt like whiplash after we were on such a high about the news from my PET scan. Dr. Livingston was sure to mention that he is not a thoracic surgeon, and we really won't know what a surgeon will be comfortable doing until we meet with one. Because we still have hope that God will completely heal me, we are opting to meet with surgeons both at MD Anderson and at Michigan Medicine (UofM). One of our biggest prayer requests at this time is that God will guide us to the right surgeon who will feel confident in safely removing the nodules from my lungs. Although it did take us awhile to bounce back from this, we eventually picked up the pieces and chose to focus on the next thing, which was chemo. 

This past week I completed my 6th round of my "new" chemo regimen. Although it was technically my last round of chemo, I chose not to make a big deal out of it because I am very aware of my situation and the reoccurrence rate of osteosarcoma. I know that I will likely have to go back on treatment (chemo or otherwise) at some point, so it was just a way to protect myself from more heartbreak. Don't worry though, I still have hope and am remaining positive, I'm just careful and am choosing to protect my heart. This round went as expected, after 6 rounds of the same thing I know exactly what to expect, how to dress, and how I will feel on every day. 

On a more positive note, I was able to stay busy (again) during my weeks off treatment. My mom, dad, Josh, and I took a weekend vacation to Traverse City where we did all the Traverse City things! Wine tasting, shopping, and visiting neighboring cities. The following weekend, I was able to attend another good friend and colleague's wedding! It was so nice to get dressed up, see my friends from school, and feel "normal" for a night. 

Moving forward, I am scheduled to have a chest CT scan and a Pulmonary Function Test in 2 weeks (no dates yet). These scans will be sent to not only my current doctors, but also to thoracic surgeons so they can begin to understand my case. We are learning to accept that we can only focus on the next thing, and those scans are the next thing. For now though, I have two weeks of recovery sitting in front of me. 

Thank you for continuing to follow my journey, no matter how exciting, heartbreaking, dull, or positive my updates might be. This has certainly not been an easy journey, but knowing there are so many people supporting me truly keeps me going. Thank you for praying, sending cards, and loving on my family and me. We are so grateful. 

With love and gratitude, 

Sierra 

September 29th, 2021

It's scan results day! We've been waiting patiently (most of the time, anyway) and praying fervently for good news today, as I know many of you have as well. I am so, so happy to report that we received GOOD NEWS! Dr. Schuetze opened the door and said "Good news about your PET scan!" We were ecstatic! The PET scan showed that the cancer in my lungs is inactive, not growing, not multiplying, and not spreading! We are so happy and are thanking God for this answered prayer! If you're like me, you're probably wondering what this means moving forward... We're looking at 2 more rounds (6 weeks) of chemo and then speaking with a thoracic surgeon about the removal of the cancer in my lungs. But let's not get ahead of ourselves, today we celebrate this amazing news! God is working miracles in my body and I am so thankful. 

If you recall, during the last round of chemo, my blood and platelet counts got super low (I needed 2 blood transfusions and 1 platelet transfusion). Dr. Schuetze wasn't sure if we would be able to do chemo this week because my platelet count was so low, but when my blood work came back, my platelets had surprisingly bounced back. Because of the way my blood and platelet counts dropped during my last round, he did lower my chemo dosage by 20%. We are undergoing day 1 of my three day treatment as we speak! 

I can't wait to get out of my infusion bed tonight so we can enjoy a celebratory dinner! We are so, so thankful that this cancer is dying off and we can start to think about lung surgery. Thank you for coming along with us on this emotional ride! We're so thankful for your prayers during this high anxiety time (and always). 

With love and gratitude,

Sierra

September 22nd, 2021

Hello Team Z! Today I'm coming to you from my second week off treatment after Round 4 of the new chemo. If you recall, after every week of chemo, I have two weeks off to allow my body to recover. This is my favorite week in each round because I've been off the chemo long enough that I feel like myself and I can do most of the things I want to do. It's been about a month (again!) since my last post, so I have a lot of things to share! 

After my last two rounds of chemo, my blood counts have gotten the lowest they've ever been. After Round 3, my hemoglobin, which carries oxygen to your body's organs and tissues, got down to 6.6 (normally your body's hemoglobin ranges from 12-15). A blood transfusion is required any time your hemoglobin reaches below 7, so this number earned me my first ever blood transfusion! A lot of people ask if I felt like I needed a blood transfusion, and the answer is no! I did not feel like I was lacking energy at all, so I was just along for the ride. However, after the blood transfusion, I could definitely tell a difference! This all happened right before Labor Day Weekend, and I'm so happy that it did. I vacationed Up North with the Zylstra family over Labor Day, and one of the activities we did was climb the Sleeping Bear Dunes Dune Climb. I was able to do this without taking any breaks on the way up! I never would have been able to do this prior to the blood transfusion. 

After Round 4 of chemo, my hemoglobin hit another PR... I got down to 6.4 this time. This, of course, earned me another blood transfusion. This time, I was excited! I could tell that my body was not working properly. I couldn't walk without needing breaks, I was winded after taking a shower, and I certainly wasn't able to work on gaining muscle at physical therapy. The blood transfusion made me feel a lot better, and allowed me to enjoy another awesome Up North vacation with my friends. We biked 10 miles on the Sleeping Bear Heritage Trail and golfed 9 holes! Because my hemoglobin was so low prior to the blood transfusion, my doctor wanted to recheck a few days later to be sure things were getting better. So, on Monday after my Up North vacation, I had another blood draw. This time when the medical assistant led me to an infusion chair after the blood draw, I was very surprised! I felt great and wasn't expecting another blood transfusion. However, this time my platelets were to blame! Platelets clot your blood and prevent bleeding, the typical range for your body's platelets is 130-400... mine were at 7! Needless to say, I needed a platelet transfusion. 

This week Friday, September 24th, I have another set of scans to determine whether this chemo regimen is still killing the cancer cells in my lungs. This time I'm having a PET scan, which will scan my whole body to be sure the cancer hasn't spread to any other bones or organs. This scan obviously holds a lot of weight; we are so hopeful that this treatment is killing all the cancer so that I can have the nodules surgically removed. Just as a reminder, because osteosarcoma is so rare, there aren't many treatment options. This treatment is already my second one, and if this one stops working, we likely will move to clinical trials. We ask that you pray over these scans and this treatment; pray that the treatment continues to work, that the scans show the cancer dying, and pray that we can lay our worries and anxieties over the scans on the Lord. We will not have results from my scans until we meet with my Dr. in Ann Arbor on Wednesday. He will read the scans, and determine from there if I will continue with Round 6 of this chemo regimen. I will certainly update everyone with the results as soon as we know! 

You've already read about two Up North trips that I got to take on my weeks off, but there's still one more! Josh and I traveled to Charlevoix to celebrate his 30th birthday during the last week of August. We stayed in one of Earl Young's mushroom houses, which was so fun and unique! We also took a day in Petoskey to shop and do some rock hunting (one of my favorite things to do Up North). Needless to say, I have stayed busy! I am so thankful for these opportunities to "getaway from cancer" and enjoy our beautiful state. 

If you feel like I don't update this blog enough and you'd like to have more frequent updates about my cancer journey, then I have a treat for you! I recently started an Instagram account, which many of you have already followed, where I post more frequent updates about my journey. Let's just say my Instagram followers already knew about the blood transfusions! Instagram saw it first! If you'd like to follow along, just search "sierrafightssarcoma" on Instagram. If not, no worries, I will still continue to update my blog! 

Thank you for continuing to follow my journey, it's been a wild 6 months! Can you believe it's been 6 months?! As this week is a big week for my treatment (scans on Friday), your prayers are so appreciated. Thank you from the bottom of my heart <3

With love and gratitude, 

Sierra 

August 24th, 2021

Today I start my update with apologies!! Gosh how has another month gone by?! I know it has been awhile, but I just wanted to get a few things squared up and solidified before I got information out there. There is definitely a lot of updating to be done! My brain works best in organized sections (very Type A), so I will section the information into three parts...

Houston- As many of you know, I had the opportunity to travel to Houston for an appointment at the Osteosarcoma Mecca (in my opinion), MD Anderson. This trip was a big deal because MD Anderson is a big deal; getting to be a patient there is very exciting. They do not accept new patients without an in-person visit, which is why my mom and I had to fly down. Our appointment went really well! We met my new doctor, the [cancer world] famous Dr. Livingston! Dr. Livingston is a clinician and researcher in Sarcoma Medical Oncology. He has a particular interest in the care of teens and young adults with cancer and is co-director of the MD Anderson Adolescent and Young Adult (AYA) oncology program. His research is focused on developing new treatment strategies for patients with osteosarcoma and other bone sarcomas. All this to say, he's a HUGE deal and we are so happy that he is officially a part of my team. He definitely checks all my boxes! Dr. Livingston shared with us the many different clinical trials he is excited about that I could be a part of if necessary. Right now, we're still holding on to hope that my current treatment is working and we can continue moving forward with that. The clinical trials will be there if we need them, but we would obviously rather invest time into treatments that have been proven to work for many years. 

Although we left this appointment feeling very happy with Dr. Livingston and the many treatment options I still have, I would be lying if I said it were all rainbows and butterflies. Dr. Livingston was very honest, which we appreciate, in saying that if we don't find a treatment to shrink and/or get rid of the cancer in my lungs, there is no cure. He used a really good analogy: the cancer treatment is like the weed killer in your garden or yard. You can pull the weeds by hand (referring to surgically removing the cancer in my lungs), but they will just continue to come back. Without weed killer (i.e. chemotherapy or another treatment), you can't really get rid of the weeds. Although this news wasn't new to us, we knew the cancer needed to be killed by a poison of some kind, it was still hard to hear again. You never want to hear a doctor say "no cure". However, we reminded ourselves of all the great clinical trials that are available to me, and remained hopeful that my current treatment is doing the job, and we got back on the saddle. This brings me to my next organized section :) ... 

**Side note related to Houston, I have the best friends! I had some friends from school surprise me at the airport in Grand Rapids to send me off with good luck on my trip. I also was welcomed in Houston with a beautiful bouquet of yellow flowers from my friends from AQ. I am constantly thanking God for the people He has placed in my life to help me cope with this diagnosis. It means the world to know people are still thinking of and praying for me constantly. 

Scans/Chemo- After my scans on August 16th, we met with Dr. Schuetze (U of M) on August 18th to discuss the results. Dr. Schuetze noted that the nodules in my lungs have grown only slightly and the the nodules are calcified or are calcifying. This was great news to hear, as calcification means the cancer is dying! Because my cancer is a bone cancer, when the cancer dies it turns to bone (weird, right?!). Calcification can also cause the nodules to grow slightly, so this could explain the minimal growth. We were excited to hear this news, but did not want to celebrate until Dr. Livingston (MD Anderson) confirmed these findings, which he did today! The observation that the cancer is not [really] growing and the nodules seem to be calcifying means my cancer is "stable". We are happy to celebrate this small win, and hope that this treatment will continue to work for me so that the nodules can eventually be surgically removed. 

With Dr. Schuetze and Dr. Livingston's observation of my "stable" scans, we continued with the same chemotherapy regimen last week. I did three 8 hour days in Ann Arbor on Wednesday, Thursday, and Friday. My side effects from this treatment continue to be fatigue and only fatigue. I am just physically exhausted and have a hard time doing anything around the house for about 3 days. Today (Tuesday), I am feeling closer to myself and was even able to go to physical therapy this morning. We will do another round of this treatment on September 8, 9, and 10, followed by another round of scans. 

**Another side note related to my scans... I was surprised again, this time at my house when I returned from NYC (see trip details below) with "good luck" signs in my lawn! This time, the surprise came from a co-worker of my dads who has been fervently following my journey. Again, I am so, so thankful for the people in my life who continue to follow my journey and support me near and far. 

Diet- If you read my last blog update, you know I've been working through a pretty restrictive diet. I am happy to report that this is going really well! I have found lots of products that cater to my dietary needs such as, dairy free cheeses, dairy free and sugar free sauces, grain free wraps, etc. Once I found all these items in the stores, I was like a kid in the candy shop. I'm learning that I can still enjoy a lot of the meals that I used to love, they just have to be prepared in different ways. I also have actually enjoyed looking for new recipes and trying them out. So far, Josh and I have LOVED a recipe called Savory and Sticky Baked Chicken Wings, which we found in a Keto for Beginners cookbook. When you find a winner, it feels so good! Although I have certainly missed my sweet treats after meals, I'm learning to retrain my brain that I eat to live, I don't live to eat. The best part about this new lifestyle is that my body seems to be very happy. I have more energy and I bounce back from the chemo much quicker. I also have very minimal chemo side effects! If you have any great grain free, dairy free, sugar free recipes that you love (the diet is very similar to Paleo or Whole 30), I would love to hear about them! Drop a link to the recipe in the "Love and Encouragement" form! 

Those are the major updates I have to share! Outside of cancer, I have been able to enjoy life a little :) ... My mom and I were able to visit my sister at her new home in lower Manhattan, NYC! It was so great to see her and her new space, and it was certainly a feat for me to trek through the city with my still-recovering leg! We did a lot of walking, some subway-riding, and I even rode a Citi Bike! Josh and I played in a corn hole tournament at church and we won 2nd place! The only picture I have of this is of me and two cuties who played in the kids' division; they wore Team Z shirts as their "uniform". It absolutely fills me up when I see people repping their Team Z gear <3. My mom and I did get to enjoy a fancy dinner in Ann Arbor during this last round of chemo. We were gifted a gift card to The Real Seafood by another one of my dad's coworkers, it was absolutely delicious and we enjoyed a cute spot seated in the "atrium"(pictured). Josh and I are planning another "getaway from cancer" trip to Petoskey for this upcoming weekend. We will celebrate his 30th birthday in our AirBnb! 

**Photo disclosure- we have become obsessed with sunflowers! I have a sunflower shirt that says "Even on dark days, stand tall and find the sunlight". I just love that, AND they're yellow. Win win. 

Thank you, from the bottom of my heart, for continuing to follow my journey. There are more people reading this blog than I even know, and knowing that makes me feel so comforted and assured that I am covered in prayers. For now, Team Z can praise God for the positive news we've gotten so far, and pray for the continued success of this treatment. 

With love and gratitude, 

Sierra

July 24, 2021

Wow, it has been awhile since my last post! Almost a month! I've had a lot of people reaching out and asking how I'm doing, so I knew it was time to write an update. Although it has been about a month, not a lot has changed since my last post. 

On July 7th, I started my new chemo regimen in Ann Arbor. My mom and I stayed at our trusty Hyatt hotel, where we enjoy a room with two king beds! This chemo regimen, similar to my previous one, consisted of three days of chemo. Each day was no less than 8 hours long. Unfortunately, Michigan Medicine still does not allow infusion patients to have visitors. I was very tired most of the time, so I spent a lot of the time sleeping. I was not sick while we were in Ann Arbor (chemo days 1-3), so we were able to enjoy our evenings together. Once we returned home (days 4-6), I was still very tired and did have a little nausea. I was feeling better and more myself after that. While we were in Ann Arbor, my sister flew home to surprise my dad on his birthday (July 8th). She stayed for the week, so I was able to spend time with her once I returned home from chemo. 

The week following chemo, I had an appointment with Dr. denBoer at DBC Natural Holistic Health Center. Dr. denBoer works with a lot of cancer patients to help alleviate the side effects of cancer therapy, as well as give support to the immune system so that it can fight the cancer. As a functional medicine doctor, he prides himself in using food as medicine. Dr. denBoer recommended a nutritional plan that consists of a mix between a keto diet and a plant-based diet, along with lots of supplements. It has certainly been a transition, but I am working hard to give this form of treatment a chance, as it could really help my body fight the cancer. I am learning to cook with lots of veggies! My sister was able to help me get started while she was home by teaching me a few recipes before she left. You can help me on this new nutritional journey by refraining from sending me sweets :) 

We were able to get an appointment for a second opinion at MD Anderson. My mom and I will be flying to Houston for our appointment on August 6th. This appointment will be after two rounds of this new chemo regimen, so we're hoping that the doctors at MD will be able to inform our next steps; whether we continue with this regimen or try something new. 

If you saw my most recent treatment update, you know that with the delay in starting my new chemo regimen, I was able to attend my best friends wedding and my family vacation on Torch Lake. Both of these events were a huge success and were great for my mental health. I had the best time watching my friend walk down the aisle and standing by her side as her matron of honor. Prior to our trip to Torch Lake, I had some blood work done in Grand Rapids, which informed us that my white blood cell count was at 0. White blood cells are the infection fighters in your body, so having none put me at high risk for forming infection. Luckily, my doctor still allowed me to go on vacation with my family and praise God, I didn't get any infections. We just returned home from Torch Lake yesterday; it was an amazing week filled with lots of boating, camp fires, and corn hole tournaments! 

I am headed back to Ann Arbor this week for round 2 of my new chemo regimen, but round 4 overall. Although I definitely dread going back, I know it puts me one step closer to the finish line. I am looking forward to having the Olympics to watch during my infusion this week! Thank you for your continued prayers over this treatment, we are so hopeful that this is the one that will kill my cancer. 

With love and gratitude, 

Sierra 

June 28, 2021

We found out today that I will start my new chemotherapy regimen on July 7th, rather than this week. It was decided by my doctors today that we will do the treatments in Ann Arbor, and they are completely full this week. Although I hate putting this off another week, we actually feel like this is God's plan for me. My best friend is getting married this weekend, and I was going to have to miss her wedding because of my treatments. I will now be able to participate in her wedding as her Matron of Honor. I will also now be able to attend our family vacation on Torch Lake, as it will be on one of my off-treatment weeks. We are thankful that I won't have to miss out on these events with friends and family, which are so important to me. 

Thanks to those of you who already started praying for the success of my new treatment regimen. Keep them coming!! 

With love and gratitude, 

Sierra

Dancing with Josh and Big Al!
Becca's wedding!
Dani's bachelorette party!

June 27, 2021

It has been just over three weeks since my surgery and I am happy to report that I am getting around quite well with my trusty pink cane, which we have lovingly nicknamed "Big Al". Although I still can't walk long distances, I'm getting stronger and more sturdy every day. My mom and Josh make sure I get plenty of fresh air by taking me (and Champ) for walks in my wheelchair. I started physical therapy this week, and was able to ride the stationary bike on Friday! I had the opportunity to attend both a wedding and a bachelorette party for two of my very close friends over the past few weeks; my attendance at these events felt like a huge accomplishment. It was so nice to get out and participate in some of the best parts of life. 

Two weeks after my surgery, I had a post-op appointment with Dr. Steensma's PA. At this appointment my bandage and stitches were removed. We were able to see my incision for the first time, which did not disappoint (spoiler alert, it's massive and makes me look like a warrior)! At this appointment, we also discussed the next steps in my treatment. Following my surgery, my tumor was sent to pathology to test how much of it had died from the chemotherapy treatments I have already received. Pathology found that 40% of my tumor was dead, which is a bit lower than we hope for (doctors like to see 90% dead). With that, my team of doctors made the decision to change my treatment, since the current treatments weren't working for me as well as they had hoped. Starting this week, the week of June 28th, I will begin a new treatment regimen. We are trying two new chemotherapy drugs called etoposide and ifosfamide, which will be infused simultaneously over the course of three eight hour days. We still haven't confirmed whether these treatments will be in Ann Arbor or Grand Rapids, but we should have this information by tomorrow (Monday). After one week of these treatments, I will have two weeks off and that will be one round. We will try two rounds of this new regimen and reassess by rescanning my lungs. 

Obviously, hearing that only 40% of my tumor had died wasn't the news we were hoping for. Our biggest prayer request at this time is that this new chemo regimen will be the right one for me, and that it will kill and/or minimize the cancer in my lungs. We have already started to think about plan B, and have plans to head down to MD Anderson in Houston for a second opinion if these chemo drugs don't work for me. 

Thank you for continuing to follow me on this journey. We continue to trust in God's plan, and are working hard to cast our fears and anxieties on Him. We continue to praise God for a successful surgery (we got that cancer outta there!) and what has been a smooth recovery. We pray that God will continue to walk beside us as I embark on a new treatment regimen, which has a lot riding on it and holds a lot of unknowns. Your thoughts, prayers, and support mean the world to my family and me!

With love and gratitude, 

Sierra

June 7, 2021

We have a lot to celebrate this week! On Thursday, I had my limb salvage surgery. We prayed fervently for a smooth and successful surgery for weeks, as I know many of you did as well. I am happy to report that our prayers were answered! Dr. Steensma was extremely happy with how well the surgery went. He found that all of my cancer was contained inside my femur bone, meaning it didn't spread into my muscle. He was able to leave 90% of my muscle, which will allow for a much easier recovery for me. He did take 8 inches of my femur above my knee, which was replaced with a metal implant. Above that, there is now a metal rod inside my bone that goes all the way to my hip bone. That piece serves as a foundation for the metal implant. They also replaced my knee with a prosthetic made of metal and plastic. As you can see in the photo, all this work required a pretty massive incision which will leave me with a killer scar! Dr. Steensma said he is 100% confident he got all the cancer outta there! Praise God! 

After my surgery, I stayed in the hospital for one night and then was cleared to go home. Dr. Steensma told me at our appointment prior to surgery that about 90% of his patients stay in the hospital for 2 nights, but he did have one patient go home the next day. If you know me, you know I took that as a personal challenge! I even joked with Dr. Steensma that I wanted to go home the same day. He told my mom and Josh after surgery that it went so incredibly well, he was tempted to let me go home that day, but wanted to error on the safe side and have me stay for the night. With my one night stay at the hospital, I am the 2nd of 500 of Dr. Steensma's patients to go home after one night! 

You may recall that we originally were told that my recovery would be 6 weeks of no weight on my leg. This was because they were going to use a different kind of implant that takes longer to heal. However, Dr. Steensma opted for the metal implant instead, which allowed me to put weight on my leg immediately after surgery. This decision was made so that I can begin chemotherapy in 3 weeks with some mobility. At this time, I'm able to get around with crutches pretty well, but I still have a lot of pain when I'm up and moving around. Every day gets a little better, but for now I spend a lot of time in my recliner. 

Prior to my surgery, I had a CT scan and an MRI done to check how my cancer is progressing on chemotherapy. Unfortunately, both scans showed that my cancer is growing even on chemotherapy. Our biggest prayers at this time, other than a smooth and speedy recovery, is that the doctors find the right dosage and/or the right chemo drug to kill the cancer in my body. Now that the surgery is behind us, the next 4 rounds of chemo are our next big focus, as they set the stage for my lung surgery (which is the most important part of my treatment). The hope is that the chemo will shrink and deplete as much of the cancer as possible so that the thoracic surgeon (don't know who that will be yet) can remove all the cancer in my lungs. This surgery will likely take place this fall and, like I said, is the most crucial part of my treatment. My only chance at beating this is if every single lung nodule is removed. 

After so much positive news from the surgery (finally!), I can't leave this update on a negative note. So, here are some positives for you... last night I ate dinner at the table with my husband! Today I got out of bed by myself. My new foam wedge (thanks Uncle Scott!) allows me to get into my recliner independently. I have very minimal swelling. Last but not least, I took a shower last night! 

My family and I are beyond grateful for all of the positive thoughts and prayers we received last week. The success of the surgery was such an answered prayer; God truly worked through Dr. Steensma's hands. Thank you for continuing to follow my journey. We still have a long ways to go, but this surgery feels like a huge step toward the finish line. 

With love and gratitude, 

Sierra 

May 27, 2021

Today I am writing from my private infusion room in Ann Arbor on my last day of Round 2 of treatment! Unfortunately, I am alone in this room again; Michigan Medicine is still extremely strict about letting visitors in the room with patients. My mom and I have still done our best to enjoy our time in Ann Arbor. I get out of my treatments around 4:00pm each day, so we've done a little exploring in the early evenings together. We like to find a different place to eat every night and a different place for dessert :) 

Prior to this week in Ann Arbor, I was in my 2 weeks off-treatment stretch. During my first week off-treatment, on the day AFTER my birthday (thank goodness), I developed thrush in my esophagus, which eventually moved into my mouth. This was extremely painful and forced me on a liquid and soft food only diet for about 5 days. Once we got a handle on that, I was able to enjoy my second week off a bit more. We celebrated my birthday in style by hosting a Wig and Stache Bash for a few close friends and family. I had a blast at my party and even forgot I had cancer for a few wonderful moments. 

Next week is a big week! I meet with my surgeon, Dr. Steensma, on Tuesday (June 1st) and my surgery is scheduled for Thursday (June 3rd). We don't know all of the details of the surgery yet, but we do know that I will be in the hospital recovering for a few days. If you're interested in gathering with my family and others to pray over my surgery, we are planning to do so on Tuesday, June 1st at my church (Standale Reformed Church) at 7:00pm. Otherwise, we are very appreciative of your prayers from home too. :) 

Thank you from the bottom of my heart for the continued love, support, prayers, and encouragement that you've sent to help my family and me stay steadfast in this journey. We still have a long road ahead of us, but having my surgery next week feels like one huge step closer to the finish line. We know there are so, so many praying for me each day, and it truly means the world to us to know we're not alone in this journey. 

With love and gratitude, 

Sierra

Round one, DONE!

Although I was all alone during my Ann Arbor treatments, this cross, which was gifted to me by my uncle, was a sweet reminder that I'm never really alone. 

Happy to have a room with a window for once! 

I felt so good in Ann Arbor (during the second week) that my mom and I had Buddies Pizza for dinner!

May 2, 2021

Today we are celebrating my first day of feeling good after another Grand Rapids treatment week! Since my last post, we completed my first full round of treatment, which ended with an Ann Arbor treatment. My second week in Ann Arbor went even better than the first (no nausea!).  This past week we started right back over again with Round 2. As you may recall, the first week of each round is in Grand Rapids, and my last treatment in Grand Rapids was very difficult. This go around in GR was not quite as bad as the first, I was able to fight nausea with medication and keep food down, but it was still very difficult and long. I spent most of my days this week sleeping. However, almost like clock work, I woke up this Sunday morning feeling more myself than I have since Monday! I was even able to meet my parents for breakfast at New Beginnings... if you've been following my journey, you know New Beginnings cravings have served as a light at the end of a long tunnel for my family and me.

Just as in Round 1, I will have the next two weeks off from treatments to relax and recover. We don't have any big plans yet, but I will get to celebrate my 27th birthday (May 4th) this coming week; I'm a huge birthday person so I'm happy to have this day off treatments! We are also thinking about checking out Tulip Time and maybe even visiting my sister at her new home in New York (we can dream, right?!). 

This week we did schedule a date for my limb salvage surgery. Just as expected, the surgery will be immediately following my second round and is scheduled for June 3rd. Although the tumor is in my left femur, the surgery will be similar to a full knee replacement and will be followed by a long 6 week, no weight bearing, recovery. This surgery is extremely important, as it is crucial that Dr. Steensma removes all of the tumor from my femur. Prior to the surgery, I will have another MRI to get a very clear look at my tumor and how it's progressed since starting chemo, then I will meet with Dr. Steensma to go over his plan for the surgery. As this week approaches, we ask for prayers over Dr. Steensma, his team, and my family and me. We pray that God works through Dr. Steensma and his team to get all the cancer outta there, and that we might be granted peace as we navigate the anxieties of such a high stakes surgery. 

We cannot even begin to put words to how thankful we are for the continued love and support we've received over the last few months. Would you believe that I get around 3 cards every day!? Josh and I cherish the time each evening when we can open cards together and be reminded of all the people STILL praying for, encouraging, and supporting us on this journey. Thank you, thank you, thank you. 

With love and gratitude, 

Sierra 

April 17, 2021

We've officially made it through our first U of M treatment. My mom and I made the trek to Ann Arbor on Monday evening and I had my first treatment starting bright and early on Tuesday morning. Due to the rising COVID cases in Michigan, Michigan Medicine updated their visitor policy to no visitors with adult patients; sadly I had to go through the treatments by myself. This was extremely disappointing, as the days typically went from 9am until 7pm. More than anything I suffered from extreme boredom during my treatments. 

The nurse in Grand Rapids was right, the methotrexate (chemo drug) was not nearly as nauseating as the drugs I received during my treatments in Grand Rapids. Even though it was less nauseating, methotrexate is a very potent drug and can be extremely hard on your kidneys if not monitored correctly. The nurses are required to keep very close control over my body's pH levels, which is measured through a urine test. For this reason, I was in a private room all three days, which was a huge blessing! 

On Tuesday evening, after my first day, I was a little nauseous upon leaving the cancer center. The nurse gave me some medication to help control the nausea, which unfortunately made me extremely groggy for the remainder of the evening. Wednesday was a great day, I didn't have any side effects. Wednesday evening I started a "rescue drug", which is used to protect the good cells in my body from the methotrexate. This drug made me nauseas and made for a rough morning. My mom did come in the cancer center with me on this day because I was so sick. The nurse quickly got me on a medication regimen to help with the nausea and the rest of the day went smoothly. We returned home on Friday morning and I have been feeling good for the most part! 

During the first week of April, I started losing my hair. I knew this would happen, so it wasn't a surprise. Regardless, it was really hard to watch and experience. We decided to shave my head on April 6th, as I was no longer able to maintain it comfortably. I was surprisingly less emotional about shaving it than I thought it would be. We were pleasantly surprised to find that I have a very round, symmetrical head! I haven't minded being bald for the most part, it is definitely a lot less maintenance and makes getting ready much easier! My dad loves having another baldy in the family :) 

During my two weeks off of treatments, Josh and I did take another "getaway from cancer" trip. We loved staying at The Commons in Traverse City so much we decided to go back! We had a great time shopping and exploring Old Mission Point. 

Next week, my mom and I are headed back to Ann Arbor to repeat the exact same cycle. We are hopeful that eventually my mom will be able to come in to the treatments with me, but it probably won't happen next week. Wear your mask folks! Help Michigan get back on track! 

On an unrelated note, we are doing one last round of Team Z t-shirt orders if you are interested. Use the form linked in the "ways to support" tab at the top of the page to find the order form. My family and I are so incredibly thankful for all the support we've received throughout this journey. Whether you bought t-shirts, donated to the Go Fund Me, sent me a card, wrote me a warm and fuzzy, or prayed for me we are so thankful. I'm the luckiest unlucky girl in all the land! 

With love and gratitude, 

Sierra

March 28, 2021

Well, we can officially check week one of chemotherapy off the list (reminder that one week is different than one "round")! I wish I could say that I was able to maintain the attitude portrayed in the picture above, but that would be a lie! (Special thanks to my Auntie Jodi for those beautiful socks :) ). They weren't lying when they said chemo is the real bit**! 

Monday was an extremely long day; Josh and I arrived at Lemmen-Holton at 8:00am and finally made it home by 6:00pm. Despite the long hours, it was a smooth day overall. I was hooked up to fluids, Cisplatin and Adreomycin (chemo drugs), and went home with the Adreomycin on a portable pump. On Tuesday, my mom and I arrived back at LH by 8:00 and did the whole thing over again! I was home much earlier, and still was feeling pretty symptom free, other than feeling tired. Wednesday I was escorted back to LH in the afternoon by my sister, Sydney. She must've drawn the short stick, because Wednesday I was feeling all the symptoms. I was dealing with constant nausea, vomiting, exhaustion, and feeling generally "out of it". Luckily, the appointment was much shorter, I was flushed with fluids and disconnected from my portable pump. Sydney was able to bring me home after a couple hours and I spent the rest of the day in bed. Thursday, Friday, and Saturday were similar to Wednesday. Despite rotating three different nausea medications on a strict schedule, I could not kick it. I spent most of these days uncomfortable and in bed.

Today, Sunday, I woke up craving New Beginnings breakfast and feeling more like myself than I had since Monday, praise God!! Josh and I ordered New Beginnings to go and I was even able to eat some of it! (My eyes were a little bigger than my stomach). We walked the dog this morning and watched church on the couch. It's only 11:00am and I've already been out of bed more than the past three days combined. I haven't had any nausea medication since last night and I feel generally happy again! 

The next two weeks I will go back to Lemmen-Holton for lab work only. I will not receive chemo again until April 12th, when we will be headed to Ann Arbor for the second half of my first round. I am so thankful to have these next two weeks to recover and enjoy myself before I get my ass kicked again :/. The nurse I had this week did tell me, though, that the high dose Methotrextate, the chemo drugs I will receive in Ann Arbor, will be much easier to manage than the two I just completed in Grand Rapids. Phew! 

Although this was a hard week, I feel better equipped to fight the battle ahead of me now that I know what to expect. As long as I can always look forward to New Beginnings cravings at the end of it, I know I will make it through. Thank you from the bottom of my heart for all the love and encouragement that I received this week.

With love and gratitude, 

Sierra  

March 18, 2021

After two full weeks of doing nothing but faithfully injecting myself with fertility medications, I finally have some updates to share. Today, March 18th, I had my egg retrieval surgery. The doctors told me that I had a "beautiful cycle" and they were able to retrieve 23 eggs. I have no concept of whether this is good, bad, or great, but they all seemed to be very positive about the number. These eggs will be cryo-frozen until Josh and I decide we're ready to start a family. We are certainly feeling very fortunate to be living in a time where science had made this possible. What a medical miracle! 

This week, Josh and I met with the care coordinator at the Lemmen-Holton Cancer Pavilion to go over my chemo schedule and things to expect as I begin my treatments. My first day of chemo therapy is scheduled for Monday, March 22nd. This first week of my chemo cycle will require me to be on a pump for three days, but I will take the pump home at night. Day 1 (Monday) will be a 6 hour drip at Lemmen-Holton, then I will go home with the pump at night. Day 2 (Tuesday) will be slightly shorter day at Lemmen-Holton and the pump will go home with me again, and Day 3 is dedicated only to unhooking me from the pump. The treatment for my cancer is called MAP chemotherapy; the "cycles" are organized in this way:

Week 1- Cisplatin and Adreomycin (chemo drugs) for three days at Lemmen-Holton (Grand Rapids)

Week 2- Lab work only

Week 3- Lab work only

Week 4- High dose Methotrexate (chemo drug) for 1 day (6 hour drip) at UofM (Ann Arbor)

Week 5- High does Methotrexate for 1 day (6 hour drip) at UofM (Ann Arbor)

After two of these "cycles" (10 weeks), Dr. Steensma will perform a "limb salvage" surgery to remove the tumor in my femur. This will be comparable to a full knee replacement. This surgery is the most important part of my treatment; removing the main tumor completely is the only way to get rid of the cancer. If not removed completely, the cancer will return and it will be much harder to treat. We are thinking this surgery will land around the first week of June. After the surgery, I will complete 4 more cycles (20 weeks) of the above chemo regimen and scan my lungs another time to see if a lung surgery is necessary.

I did get to have a couple of fun, shorter "cancer getaways" in the past couple of weeks. My mom, sister, and I spent a night in Pentwater just to get away and spend time together. Josh and I also had a really nice day seeing the butterflies at the Frederik Meijer Gardens. I've also received some really, really sweet and thoughtful gifts in the past few weeks. We are feeling so loved and cared for! 

My family and I are in good spirits as we head into "go time". I've been living with a cancer diagnosis for over a month now, which feels surreal. If you know me, you know I don't like to sit around without completing tasks and feeling productive; I haven't felt productive in the past few weeks. I'm ready to start the fight so that I can move closer to getting back to normal life. We strangely feel at peace with the path that lies ahead of us; we contribute this feeling to the power of prayer. We are so blessed to be surrounded by such an amazing cloud of witnesses who are walking along side us every step of the way. Please keep praying, it's go time! 

With love and gratitude, 

Sierra

March 4, 2021

Warning: This update is far less eventful than the last (Thank God!)

We are continuing to live in the "hurry up and wait" space that only comes from having multiple doctors working together to craft the absolute best treatment plan for me. Although it now feels like things are taking forever (knowing there is cancer living and thriving in my body is a weird feeling), the doctors have assured us that things are actually moving quicker than normal. 

Last week, Josh and I traveled to Ann Arbor to meet with Dr. Schuetze, a world renowned doctor who specializes in osteosarcoma. He confirmed the diagnoses and gave us a very clear treatment plan. The only downfall: he preferred that I receive treatment in Ann Arbor. Although I of course want the best treatment and care, the inconvenience and discomfort of traveling to and staying in Ann Arbor for multiple days at a time was upsetting. I talked to my oncologist in Grand Rapids about this, Dr. Sochacki, and he and Dr. Schuetze worked out a compromise... I will receive some of my treatments in GR and the more difficult ones in AA. What a blessing to get two amazing medical teams working together for my benefit?!

Last weekend, Josh and I took a "getaway from cancer" weekend, which was much needed. We stayed at The Commons, a historic asylum in Traverse City, and did a few wine tastings. We had such a good time and hope to do more of these "getaway from cancer" weekends when we can. 

Yesterday, March 3rd, I met with Dr. Guiliani at The Fertility Center in Grand Rapids. Because I'm 26, it has been recommended by my doctors that I go through the process of "harvesting" and freezing my eggs, as chemotherapy can cause infertility. I will start this process on Friday, which will be very similar to an IVF cycle. In other words, I will have to give myself two shots every night for the next two weeks. Yes, it does take two weeks... meaning I will not be able to start chemotherapy until March 22nd. 

Yesterday I also got to pick up the wig that I picked out to accompany my future bald head! Shoutout to Beautiful You by Profile for working with women like me who still want to feel beautiful during this awful time. The wig is beautiful, but it will definitely be an adjustment for me. If you know me, you know how particular I am about my hair (I've always been this way). I am still a ways away from losing my hair, but again, if you know me, you know that wig shopping was the first thing I organized and planned when I got my diagnosis. Here are some photos of me forcing myself to love my new look :) 

In case you missed it, Fox 17 did a story about how the West Michigan community has rallied around my family and I as we navigate these turbulent waters. I don't think this 2 minute story truly demonstrates the amount of gratitude I have for the outpouring of love and support we have received over the last month. We are eternally grateful for the cards, flowers, gifts, meals, and donations that have fueled our positivity and relieved our anxieties during this dark time. I never could have imagined this diagnosis as part of my life's journey, but I also never could have expected the amount of people that would wrap their arms around me. Thank you, thank you, thank you. 

With love and gratitude, 

Sierra 

February 22, 2021

Things are happening very quickly! On February 11th, the day before mid-winter break, I said good-bye to my class of first graders. It was so hard to say goodbye, but I felt so loved by my students, families, and coworkers. My Marshall family continues to support me through this process. I feel so fortunate to have such an amazing support system surrounding me every step of the way. 

I also had a CT Scan on February 11th. This scan was done to determine if the osteosarcoma has spread in my lungs, which is a typical place for sarcoma to spread. My doctor had said he would be "very surprised" if it had spread to my lungs; the chances of it moving to the lungs so quickly are very rare. Unfortunately, the scan did show a mass in my right lung. Although this news was crushing, the doctor gave us a little glimmer of hope; the mass was surrounded by calcium, which can mean the mass is from an infection (COVID, maybe?!) rather than cancer. 

On February 17th, I had a lung biopsy done to look closer at the mass in my right lung. I also had my port implanted on this day, which will be used for my chemotherapy treatments. As if things couldn't be going worse for me, a complication from my lung biopsy, called a pneumothorax, earned me a 1 night stay at the hospital! There is a 2% chance that people will experience a pneumothorax after a lung biopsy... man oh man, when it rains it pours! I was hooked up to oxygen and got to use my port for the first time... 2 days after it was implanted! Doctors placed a chest tube in my chest cavity to drain the excess air around my lungs. The tube was placed on a nerve, which happens very rarely (of course), so I also earned myself lots of pain killing drugs. 

Today, on February 22nd, we received the news that the mass in my right lung is, unfortunately, osteosarcoma. This means my cancer is metastatic. Many people struggle to understand how we can laugh through all of this, but humor is my coping mechanism. This giph (on the left) best describes how my family and I are feeling after all of this very traumatic news. We now refer to my cancer as the "Pink Barbie Jeep".

We have an appointment scheduled with a doctor from the sarcoma center at the University of Michigan. My doctors in Grand Rapids feel that their input and opinions will be valuable for my treatment plan. Once we have their input, we will start the chemo process immediately after. Because I am so young and generally healthy, (I used to be anyway), the chemo will be very aggressive. 

On a positive note (I'm sure you're dying for something positive), I have felt absolutely loved and cared for by so, so many people. People have come out of the woodworks to send me warm and fuzzies, and it truly means SO much to my family and me. I'm not sure what the future has in store for me, but I do know that I am loved by so many, and I have prayer warriors across the country. Thank you, thank you, thank you, for your support, prayers, and love as I conquer rare diagnosis's and aggressive treatments. 

With love and gratitude, 

Sierra 

The beginning: How we got HERE...

Many people ask, "What are your symptoms?" or "How did you know?". To answer that question I go all the way back to April 2020, to the beginning of the COVID-19 pandemic. As I'm a teacher, I found my self bored out of my mind (COVID had me stuck at home) and looking for things to do. I started going for long walks with my dog, Champ, to pass the time. As I got around 2 miles of walking, I noticed my knee starting to hurt. I thought it was weird, but just wrote the pain off as "getting old" and having a beat up body from playing too much volleyball (I played volleyball in college). I continued life as normal. As the summer progressed, I continued to be active and only complained about my knee after long walks or bike rides. 

In the fall of 2020, I started a new school year. I teach first grade, so I am very active at school; I am constantly squatting, sitting on the floor, jumping, dancing, you name it. I immediately started to feel my knee pain getting worse. This time, I attributed it to starting a new school year and being "out of shape", as it had been 6 months since I had worked in my classroom. I thought that if I started working out again and getting my body "back in shape", the pain would go away. 

I signed up for yoga, naturally, thinking it would get my body loose and relaxed. I was also able to play in my YMCA volleyball league in the fall, something I usually enjoy playing in all year round. After a few yoga sessions and a couple weeks of volleyball, I found my knee in extreme pain, making it hard for me to even walk. I finally decided to go to my doctor. 

My doctor did multiple different tests, looking for a potential ligament tear in my knee. She wasn't able to find anything that would scream "meniscus tear" or other knee injuries. I left her office prescribed with 2 weeks of anti-inflammatories and rest. After the two weeks, I let her know that I was not feeling better, and she prescribed physical therapy. 

One stomach ulcer, one positive COVID test, and 3 weeks of physical therapy later (when it rains, it pours), I decided I was done with this bullsh*t and I made an appointment with my orthopedic doctor. Dr. Theut repaired my shoulder after a labrum and rotator cuff injury... needless to say I really trust this guy. Dr. Theut ordered an MRI, and that's where things really get interesting... 

On January 30th, I had an MRI of my knee. I told my husband, Josh, on Saturday after the MRI, "My prediction is a torn meniscus, what's yours?" He wasn't willing to join me in this guessing game, but this gives you a little perspective as to where our thoughts were at this time. By Monday morning, I had a voicemail from Dr. Theut describing my MRI in a way that was quite concerning. Words like, "I don't want to alarm you" and "I just don't exactly know what I'm looking at" made me nervous, but I still wasn't thinking cancer. Dr. Theut explained that he was referring me to "his good buddy" who would be able to give a better idea of what we're looking at. His "good buddy", Dr. Steensma, called me that same day...

Dr. Steensma, I learned over the phone while driving home from work, is an orthopedic oncologist.

Dr. Steensma explained that after looking over my MRI and an Xray, he was considering 4 different things: an infection, something called "chroma", lymphoma, and a few different bone cancers. He told us very bluntly that he truly had no idea what to expect, and only a biopsy would tell us what's going on in my knee. 

On Friday, February 5th, I had a bone biopsy done. On Tuesday, February 9th, I was diagnosed with osteosarcoma, a rare bone cancer. 

At this time, I don't know exactly what my treatment plan will look like. I know it will entail chemotherapy for at least 9 months, as well as a full knee replacement. More information to come. 

With love and gratitude, 

Sierra <3