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Chemo.
April 30, 2024
Back to the hospital for overnight admittance of Chemo Cycle 3.
As usual we go to Roswell clinic first to talk with the oncologist over symptoms, concerns, etc. The amazing nurse Abby, who seems to have been there the last couple of times, accesses Carson to get ready for our admittance to Oishei for chemotherapy. I cannot say enough about these humans at Roswell and Oishei in J12! They truly are there for the child and the family in every way possible.
This time the stay felt different. This is actually the first stay for this type of chemo that we didn't have a surgery tacked onto.
How will it feel? The same as usual...???
Nope. OF.FLIPPING.COURSE.NOT.
We learned that Carson would need his first blood transfusion.
Here we go...MAY he be alright after this transfusion...
Angst.
April 29, 2024
We had a very long evening discussing the new angst behind being admitted tomorrow for chemo. This time was a bit different because although he had this chemo regiment the first time, he also went through a major surgery prior to receiving the meds so what happens this time in his body?
More of the same type of questions loomed from Carson the night before:
What will this time bring me?
What does this stay even feel like?
Why can't I just do it then come home and go back?
We answered truthfully...with the same sentiment as him...but truthfully.
Friends.
April 22, 2024
I know that for me personally, I cannot live without a single person that I have met. Yep, you read that right. Each person I have met have lead me to be who I am today, good or bad.
Some give me hope.
Some help me learn hard truths.
Some give me strength.
Some help me understand who I DON'T want to be.
Some make me laugh so.damn.much.
Some understand that we don't need to talk everyday - we just are friends forever.
New.
Old.
Work.
School.
If you know me, you know I am here for you. I instill this same ideation in my children as well.
But...
With kids/tweens/teens...do they know that about each other as they navigate different types of groups they belong to? I am referring to those random friend groups, been-in-the-same-class-for-years groups, sport groups, club groups , etc.?
All I know is that, I can confidently say that I have never - EVER - experienced a group of young men(seriously, these kids deserve this word as they are truly working towards being great men!) that have stepped up to make sure that their friend, who they haven't physically seen or some who haven't even heard from in months; feels included, loved, thought of and important - like the boys that are in Carson's life.
Let's take a moment, shall we, to give a literal standing ovation, HUGE accolades, GIANT hugs and more to every single one of the parents involved in these boys' lives.
They give me hope and give Carson strength for the future. So think of this as more of a parent appreciation post to all of you raising these fine young men.
And God, do I vehemently hope you all know who you are! 💛
Kindness.
April 21, 2024
In all of my years...
In all of my thoughts...
I never expected an organization to reach out, ask for ideas then tell me they weren't big enough essentially...then deliver.
WHOA. Boy-oh-boy did they deliver!
And to every single child in this house...not just Carson...big bro and little bro both got gifts to be sure they knew that people are rallying behind them as well. They are thinking of them. They are feeling their feelings.
You see, Olivia's big sister showed up with Dad. She knows how this goes. Dad's experience was palpable as well. Olivia is the younger sister and she started Olivia's Bears. It is a non-profit organization.
Olivia was diagnosed with...Ewing's Sarcoma.
Albeit, many years ago. Olivia wanted kids to feel the comfort of a bear as they were going through the constant pokes, prods, the scary visits and words they endure. It had since grown and she is now living with no evidence of disease (words I am praying/dreaming/wishing to hear every year for Carson's life like she is).
We got our list to them and they showed up and I could have hugged these beautiful humans for hours for bringing their amazing energy, supportive vibe and of course the tangible things into our home...it is now a literal core memory and I cannot thank them enough for their thought process behind each gift that was given today.
Olivia's Bears - I am forever in your corner and when I can help be a part of what you do for families - consider me yours!💛
Discharged.
April 19, 2024
It only took hours for my guys to be discharged and come home....but luckily Carson slept most of the time. It had been a long night to begin with and he was in need of a recharge type of sleep.
Why everything is SO much slower on the weekend is beyond me.
Why everything seems less on a weekend is so maddening.
But - even though Bob slept less than normal and the same for Carson - they were finally home to love and to nap.
Chemo Cycle 2 Done ✔️
Sleeping.
April 18, 2024
It...just... doesn't exist at a hospital - let me help you understand:
Between the constant state of mind you are in worrying if everything is ok...
The nurses doing their darndest to stay quiet...
The bags of fluids filling your child's bladder...
I am telling you right now - you just aren't sleeping.
BUT! Perhaps, on the off chance that you do somehow pass out (after waking every hour to help your child make his way to the bathroom or urinal bottle) even when your sweet cherub throws a stuffed animal at your head to wake you but you clearly committed to that hour of sleep so you don't wake up(don't worry his big brain afforded him the idea of pressing the nurse call button to be able to pee) - get you an air mattress and some cozy sheets and blankets...makes a difference for that whole hour you actually procure while spending the night there.
CLEARLY didn't happen to us, let alone me, personally...nahhh...just wanted to let you all know what COULD happen...yeah, totally!
Brothers.
April 17, 2024
Brothers...
Your first best friend.
Your first roommate.
Your first play-play. (Carson used to call Gavin his play-play...honestly the sweetest sound you could hear as a parent.)
Sometimes being a brother is even better than being a superhero.
Bob, Gavin and Owen came with dinner and a visit. We never realized how much that would help until we were in it. My eyes were welling up every 5 minutes listening to the chatting and laughing.
My God I hate this situation more than anything...not just for Carson but in this moment - for Owen, Gavin and Bob. I just wish we were home at the dinner table having these conversations. Not in a hospital with unknowns looming over our heads at every turn.
And so I say to myself over and over again...nobody ever fights alone. We are the army that he needs to conquer this disease!
We are...Carson's Army!
Tricycle.
April 17, 2024
I won't even express to you how wild this concept is to me.
I was told by PT (I will spare you the experience behind the of lack of communication on the part of many regarding his leg and what he can and cannot do) he can use this tricycle.
Annnd....quite literally, the game.just.changed.
He was able to control it by utilizing his left leg and coasting with the right, all the while exercising (safely) his right leg.
And the bonus of it all is being able to spend more time out of his hospital room & bed that in turn ultimately gains time with family in the game room! Because brothers are allowed to come and visit...and they sure didn't disappoint!
Chemo.
April 16, 2024
Next up - new experience with new meds and a longer chemo stay.
We have to go to Clinic at Roswell before our admission for Chemo. This gives us the opportunity to ask questions with the oncologist and gain clarity. Not just that but it gives Carson the opportunity to express any thoughts (and/or questions) he may have and just never expressed to any of us! And he does surprise us sometimes with his VERY valid questions.
He also will get accessed by a nurse there at Roswell before he goes up to J12 at Oishei. You see, Carson COULD have the nurse that comes to our house to do the labs the day before admission keep him accessed, but he is so put off by the tubing and the idea of the port being accessed and just hanging there, he chooses not to. And that's ok! That's the beautiful part about this...in some cases, he gets to have a choice.
We heard the words that he did great and everything went well for him between labs and such so he was good to go!
Here we go - 5 days - chemo and other meds every single day. Please let this be uneventful!
Hair.
April 15, 2024
After chemo was done the first time, we were told we had a few weeks but to expect his hair to start to fall out after at least the second round.
What we didn't grasp was how much it falls out at a time. He was pulling clumps out at a time and not on purpose.
I read up on all of this. I did my research. What to do to help, what to say, what NOT to say...a tween is no easy subject my friends. They have big feelings and big thoughts. And my son was no different from what I read.
I also had to set my feelings aside and be able to frontload the hell out of this subject area that honestly - I am not one to talk about being someone who truly loves her hair.
But I made the hard decision to cut his hair for him before he is admitted for 5 days...and we helped him through it. In true Carson and mom style - we documented with silly photos...so what you are about to see is the photo documentation of the fun we had...what you won't see is the tears that happened, the looks, the fear.
I purposely didn't video it - so what you won't hear are the chats that were had and the reassurance over and over again that...your hair will come back. Maybe curly, maybe red, maybe thick, maybe bright blonde, maybe stringy...but it will be back.
As such, had I videoed it, you also wouldn't have heard me say "it's only hair"...
Sometimes I feel like people who say that have never walked on this path or in their shoes.
You see, solely in my opinion, for some - it's[hair] all they can control. For others, it's all they have as a next level security blanket, perhaps. For most, it is honestly just another thing taken from them.
Carson is all of the above. And you guys, please don't forget, he is still 12. He expressed how angry he was that this was also being taken from him. I still vividly remember him saying "but why my hair?! why this too?!" For context whether you find it silly or not - he just got his middle part the way he liked it. He finally felt confident with his hair in this crazy tween world. He had his own identity and yes, his hair was a part of that.
And I had to shave it.
I had to take that one piece away.
Not a doctor. Not a nurse. Not a surgeon. Not a cancer research scientist. Not even a barber/hairdresser.
His mom had to take it - the one who is supposed to be the shield from the bullies, the takers, the liars - but now I entered a new realm for him. Maybe he doesn't feel it like I do, God I can only hope.
Maybe he doesn't overthink that core memory like I do.
But it happened. Here I sit, once again, thinking I am psychologically messing him up. Per usual since birth - still no manual on how to do all of this. I can only hope that one day he looks back and realizes we did it so that the large clumps didn't mentally tax him while also getting treatment in a hospital.
Below is the photos and the goofy hairstyles we tried while going through it.
Access.
April 10, 2024
Our fabulous nurse came to access Carson for the first time since being out of the hospital.
When he gets accessed we need to put lidocaine cream on the port area about 30 minutes to an hour prior to her coming over and then cover it with...ready for it?
Glad Press N' Seal.
Yes, the saran wrap type stuff. This way when you put the lidocaine cream on there you're not using that really sticky band aid type stuff to cover it while it numbs the area and keeps it in place.
Then, the nurse comes and gets her materials ready while we wipe it off. Then, she cleans the area...presses to be sure his little button(the port is like a squishy button under the skin) is where she needs it to be...then for Carson, there is no countdown - he just wants you to do it. She sticks the needle into it while drawing blood from the tube that comes out of it. Like an IV sort of.
Anyone who knows me is likely asking themselves this: "Wait, Jessica watches this happen and doesn't faint in the process?" We won't talk about the first few times when even Carson noticed me turning white. Look, sometimes you just have to do some crazy things for the people you love, I say.
Meanwhile, Bob watches and studies it and seems to not even flinch at the process. Even asks questions and when I asked him why he is so curious he said "well, I don't know - what if I have to access the port for him someday" then, next thing I know, I am waking up on the floor. (I kid, I kid! LOL!)
Eclipse.
April 8, 2024
It was a pretty amazing feeling to be able to all be home for the Solar Eclipse.
Even better was waking up to Paula's Donuts & Coffee at our doorstep thank you to our amazing friend VP! She is like the VIP in our life. Knows what to say and how to bring spirits right up!
Below are a few photos of the goodies and what we could capture with the Solar Eclipse
Nurse.
April 4, 2024
We had a nurse come to visit to give Carson his first of many Neulasta injections.
This injection is something that will build his white blood cells to help with immunity and healing. Theses injections cost $750/month. You read that right...something to help yet costs so much every month and is only given twice a month! Absolute poppycock!
Our amazing nurse - Ms. Y - has been nothing short but incredible! She listens and is empathetic with him. I am honestly feel very lucky we have her entering our home 2x/week.
Home.
April 2, 2024
Carson had a pretty rough couple of days but we were able to go home.
At one point we dubbed him "chalk outline man" because he just wouldn't move from one position.
He hated the tubes, he hated being attached to the pole. He hated the taste every time they cleaned the connector part of his port. He just hated all of it. He barely ate, barely drank (thank God for IV fluids) and barely spoke loud enough for anyone to hear because of the steri strip on his neck making any weird motion hurt.
But he did it. He made it through. He mustered the strength and energy and conquered it!
Cycle 1 of Chemo ✔️!
Chemo.
April 1, 2024
After he was in recovery for a little while, we were wheeled by a nurse to the 12th floor where we would be admitted overnight for Cycle 1 of Chemotherapy.
I will say that as we walked into the corridor of J12, I was hit with many emotions(think like the stages of grief for lack of better explanation) and feelings. I tried everything to choke them back to smile at every single person I passed. I felt like I was trembling and the feeling of complete helpless washed over me. The smiles from the nurses were comforting. The confidence exuding from the nurses was palpable. Their kindness was SO needed in that moment.
As they came in to do vitals and start the chemo process which has other meds that you intravenously take first (depending on what meds you are getting) to protect your bladder, heart, etc. and of course the anti-nausea meds...I remember Bob and I looked like we had seen a ghost. Like we had no control over what was happening anymore with him. They came in to chat with us and we just kind of sat in shock and tried to interact but it was heavy.
As Bob was leaving, him and I hugged for what felt like forever. I could feel both of us breaking down with each second of said embrace. As I laid and stared at the city that night sobbing while Carson slept, it hit me harder than I expected...this is us now. This hurricane of sadness, anger, information, feelings, etc...is all of us around him right now.
And we have to be stronger than the storm.
We have to be #carsonsarmy!🎗️💛
Mediport.
April 1, 2024
Not only is surgery scary to begin with for anyone...this one came with some added anxieties. Including but not limited to the following:
How would it all go to begin with?
What happens with chemo and healing after this surgery?
Are there any sort of new rules after having something like this live under your skin accessing your veins?!
How long until he feels well again?
What can I do to ease his mind when I feel like I am a ticking time bomb of emotions?!
Then, after what felt like four years, they called us back to see him. He was crying and couldn't tell us how much he loved us any more...which certainly made us both feel good. He was super uncomfortable with the port but did really well handling it like a champ.
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