September 11, 2019– Transplant, GVHD, and +100 Days

Hi Friends!

Today is considered day minus 8 since we are eight days out from Bo receiving his transplant. As I am writing this, Bo is sleeping while his body is receiving the fifth dose of chemo. He will receive this chemo med every 6 hours round the clock–4am/pm and 10am/pm. He is acting like his normal crazy, goofy self. The chemo will catch up with him in the coming days and weeks, but for now we are so encouraged by his sweet and lively spirit!

I have been thinking about writing this post for a while now. There is so much information about transplant that I’d like to share, but a lot of it is scary and hard, and it would be easier to just not talk about it. However, I am feeling convicted to share it because God is bigger than the scary and hard stuff. Simply put, the more people we have praying our boy through the scary and hard stuff, the more peace and confidence we have to face it. So thank you in advance for bearing with me through this long post and for your bold prayers on behalf of our Boaz.

A bone marrow transplant is serious. To break it down, Bo’s marrow, the “blood factory” in his body, is producing defective and harmful cells. Although the prior 3 rounds of chemo have effectively killed off most of the bad cells (along with a lot of the good cells too), it has not completely obliterated all of the leukemic blasts or retrained his marrow to no longer produce those bad, defective cells. A bone marrow transplant is essentially replacing and rebuilding a whole NEW factory with healthy donor cells. Right now, the chemo is essentially wiping out his marrow so that it can no longer produce anything good or bad (a clean slate), and preparing him to receive the transplanted cells. The new marrow cells will engraft into his body and his factory will begin to produce only healthy cells, essentially giving his marrow a hard reset. It’s pretty incredible.

Sadly, there is a lot that can go wrong. Some people don’t survive transplant due to a number of reasons. Many times due to infections they get when their system is completely wiped out and they are waiting for the new cells to engraft. Other times, their body rejects the new cells similar to when a body rejects an organ transplant. And sometimes the new, healthy marrow can view the recipient’s body as foreign and those cells can attack the body, causing what is called Graft-versus-host disease (GVHD).

There are 2 types of GVHD: acute and chronic. Acute is what our team will be watching for in the first 100 days especially, but it can manifest within the first 6 months. People who get acute GVHD are more likely to have chronic, which can become lifelong and life-threatening. GVHD can manifest in a lot of different ways, from a skin rash to gastrointestinal issues, and jaundice. In many scenarios, it can be controlled or dealt with by medication, but it can become serious if it is chronic.

Our team plans to start Bo on a GVHD prevention med on day -1 in preparation for transplant and will continue a regimen for several months. The GVHD prevention meds are essentially immunosuppression meds which will help the new cells to not attack the body, but will at the same time, will suppress Bo’s own ability to fight infection. It’s a delicate balance–in this time after transplant but before his cells engraft and he starts to make new, healthy cells again, he can’t fight infection and his body is at risk of being attacked by his life-saving cells.

Bo will also experience some unfortunate side effects of the treatment which will require some intervention. In a few weeks, he will develop sores in his mouth which will extend down his esophagus and throughout his digestive tract. These will likely cause pain and discomfort for Bo. We will be managing his discomfort with a pain pump, and he will most likely need a feeding tube through his nose to ensure he is still receiving adequate nutrition. Bo will also be very dependent on transfusions of red blood cells and platelets between his transplant and when the new marrow fully engrafts. He may receive blood as often as several times a week and platelets sometimes daily.

The day Bo receives his transplant cells will be considered day 0, and we will begin counting up to day +100 from there. We hope to be able to go home between days +40 and +50 if things are looking good, and will be back to the hospital twice a week for blood tests and possible transfusions. If Bo is doing well and no longer experiencing any infections or serious complications at day +100, we will be transferred back to our original care team at our first hospital for all follow up appointments for the coming years.

I understand this is a lot of information—we’ve been processing all of this for several months and only recently have really begun to wrap our minds around what is about to happen. We have had lots of time to ask questions and we have a deep peace that this is indeed the path God has for us and our Bo.

Here are a few specific ways you can be praying as Bo receives his transplant and for the 100+ days after:

– For Bo’s body to be protected from the harmful side effects of the chemo, and for the chemo to accomplish all that it is intended to do to ready his body for the new cells

– For those blessed new cells to engraft quickly into Bo’s body without complication, and for them to forever only produce healthy cells

– For mouth sores and other discomforts to be short-lived and well-managed

– For protection from any and all GVHD effects

– For protection from all infections and illnesses

– For wisdom for Bo’s care team as they navigate his day-to-day

– For strength and unity for Lance and myself in the coming weeks and months

I know I say it a lot, but I mean it with all of my heart—THANK YOU. I hope I get to thank you each personally one day for the ways you’ve encouraged and carried us through this journey. One day Bo will, Lord willing, be able to understand God’s love for him, not only by the testimony of his healing, but also by the testimony of your prayers on his behalf. I can’t wait to see what’s in store for this amazing boy!

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4 thoughts on “September 11, 2019– Transplant, GVHD, and +100 Days

  1. Thank you for your courage to share the reality of this process and thank you for the specific prayer requests. Sweet Bo and your whole family will be covered with prayer. ❤️❤️❤️

  2. We are praying for complete and total healing for this little guy and for full protection along the way. It sounds like you have such a great team working with Bo, and so we are praying for wisdom on their part. We will pray for the “phenomenon” you mentioned to us where all the bad cells are wiped out at the time of the transfusion. God has been so clearly sustained Bo and your entire fam and we will continue to pray for his love and peace to sustain you through this next chapter.

    Love you guys!

    – Colin & Allie

  3. Praying for your sweet Bo and your entire family. Can’t help but think of Boaz – the kinsman redeemer and believe that the Lord will redeem all this. Praying for you all. Isaiah 43

    Ben and Amanda Newell

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