Massive Update 08/23/2020
I have been procrastinating on making this announcement to everyone because I’m still letting it all sink in. I’m still coming to grips with the fact that it’s really true. We (Joe and I) also wanted to share this information with our family before making the update public.
It is a top priority that first and foremost we give glory to God. Secondly, I would like to thank all of you for your many prayers, well wishes, and positive vibes you have sent our way. Your petitions of healing to God are much appreciated.
Now for the big update! Recently, I went in to the Cancer Treatment Centers like I do every 3 weeks. As usual I had blood tests done to keep an eye on all my internal organs which had sustained damage due to all the chemo and the terrible side effects that I experienced while enduring this “treatment.” I also got an MRI of my brain, cerebral fluid, and spinal fluid to compare to the original MRI I had at the time of my diagnosis.
When I was originally given my diagnosis of LMD, back in March, the prognosis was a 2-6 weeks life expectancy without treatment and 2-6 months with radiation and two different oral medications. Well, I am swiftly approaching that 6 month mark. I have been feeling really well since stopping chemo and changing my medication to a new one that was just recently approved after showing positive results in clinical trials, but I was still getting a little anxious to know what results I would see. Were my good months all used up? Should I start expecting to see more of the symptoms that indicate my demise is imminent?
As I sat waiting to meet with my care team I was honestly just hoping to hear that my condition hadn’t progressed too much. If I could hear that my disease hadn’t progressed at all, that would be amazing. My Dr walked in the office in a good mood and with a smile on her face she read through the results of my blood tests. She informed me that my liver, Hemoglobin, white blood cells, and vitamin D are all in the healthy range for the first time since starting chemo. Even better, my kidneys have not sustained any new damage since and are holding at a manageable level of function. All of this is great news; a weight off my shoulders.
Next she told me that even though the Radiology Oncologist is the one who is supposed to give me the results from the MRI, I would just have to act surprised when I meet with her next. She couldn’t wait to share my results with me and I was so glad to hear what she had to say.
According to the new MRI there are no new lesions that have formed, the number of free floating cancer cells in my brain and spinal fluid has decreased and the lesions that were in my actual brain matter have all shrunk. I needed my doctor to repeat the findings and explain exactly what that meant. She got giddy as she explained that all the criteria that we measured had improved since beginning treatment and I am doing really well. My healthy cells are getting healthier and the cancer is getting smaller and reducing in numbers. This revelation was better than anything I had allowed myself to hope for.
Next up, I went to meet with the Radiology Oncologist. She came into the room just as excited, if not more excited than my other doctor. Seeing as how neurological oncology is her specialty she went over the results of the MRI again and added more pleasantly surprising news. She shared that it is not every day that she is able to share good news with patients with my condition. However, when she can share good news, those patients do really well. When patients respond as well as I have their prognosis improves dramatically. She said she has patients like myself who are enjoying years of quality life and still going strong. She said that while I will never completely be cured of this disease, it’s possible to live with it and manage it! She has patients who are continuing to live with the disease 3+ years and are doing so well that they have decided they no longer need to get follow up MRIs every 3 months but they can stretch it to every 4 months.
I couldn’t believe it! Are you serious??? As soon as I walked out of the office and in the middle of the lobby I called Joe to share the miraculous news with him. Needless to say I was grateful to be wearing a mask that day because of the ugly face cry I burst into that was only interrupted by a crazy, heaving, donkey braying sound that must have had everyone in the whole building wondering WHAT was going on with the crazy lady rocking back and forth on her cellphone.
This whole experience is nothing short of miraculous! I speak on behalf of my whole family and myself when I say how beyond grateful we are to have your support behind us. We have never felt as loved as we have through this ordeal. We are so acutely aware of the fact that when we were given my diagnosis they said I had mere weeks to live without treatment and months to live with treatment. God is so incredibly good, always! It is because of Him and all of your prayers that we are able to share in this miracle. Now we can look forward to years ahead of laughter and loving memories together. Thank you! Thank you! We love you all so much. We are excited to continue sharing our progress and upcoming adventures that we are so blessed to have ahead of us. God bless you all.💖💕🙏🏼
Megan Andrews and family
Megan is doing really well over the last few weeks. She started a new medicine that just came out of clinical trials and stopped taking chemo. This has been a really good thing because the chemo made her so sick that she could not even get out of bed. The new medicine has her feeling as close to normal as we could possibly hope. Since she has been feeling so well it has allowed us as a family to go do some really fun activities together.
I was off of work for the entire month of June because we were suppose to be in Europe but due to the Covid 19 pandemic all of our flights got canceled. Thats ok though, we made the best of our time. We took 2 camping trips and also spent 10 days in California visiting our families. Though we had a great time in June it did take a bit of a financial toll as I made $0 in income for an entire month. Thank goodness for the love and financial support from our family and friends. You all made it possible for our family to spend the last month together making wonderful memories.
I return to work on Monday, July 5th. Though I am anxious to get back I am a little concerned about the amount of time I will have to spend working in order to get caught up. To compound that concern I was told by my Orthopedic surgeon this last Wednesday that I have a major tear in my left Rotator Cuff that will require surgery. I am no stranger to this surgery as I had to have my right one done in December of 2018. However, this time circumstances have changed. At that time Megan was healthy and I had plenty of time to recover. I was able to tell the Dr. to get it scheduled ASAP. This time however I have a tough decision to make.
Do I go ahead and get the surgery which took about 3 months to recover from or do I put it off. The things I have to consider in making my decision are all revolving around Megan's terminal illness. We don't know how much time we have left. All we know is that history shows that patients with her diagnosis typically live for about 6 months to a year. She was diagnosed on March 3rd. So, if I get surgery now then I am potentially using up the rest of the time we have to enjoy doing things with my beautiful wife and the mother of my amazing boys. Another factor is cost. If I do the surgery this year and finish physical therapy before December 31st then it will be free of charge because we have already met our max out of pocket expense with the insurance. The last time I had surgery the cost was upwards of $7,000. On top of all that I am in pain and have trouble sleeping at night. If I get the surgery I will also have to miss a lot of work again and that could potentially put us behind financially. Megan has told me that I should just do it but I want to make the best decision for our family.
We as a family are going to continue to look at the positives in our life and enjoy every moment we have together. We appreciate all the blessings we have no matter how small. Your prayers are always welcome and if anyone has any input on what we should do I would love to hear it. Your financial support is appreciated and welcome. I have attached the link to our GoFundMe page. If you do not know our story then please take the time to read it. Please feel free to share this website as well as the GoFundMe with anyone. We will continue to SmileAlways and know that God is in control.