All About the Transplant

Aaron is scheduled to begin the process of a bone marrow transplant on May 10th. If you want to know more about why Aaron needs a bone marrow transplant, you can read the post "How We Got Here". Suffice to say, it's been a wild few years and we're headed into one of the tougher seasons.

If all goes according to plan, here's what we've been told to expect...

On May 10th, Aaron will be admitted to CHOP to begin the conditioning process to get his body ready to accept the new bone marrow. His little brother, Jacob, is our courageous donor - a perfect match for Aaron and all-around hero to us all. 

After Aaron's body has been conditioned through chemotherapy for 7 days, he'll be ready to receive the bone marrow cells from Jacob. The harvest of the cells from Jacob will happen early in the morning on May 18th. After the harvest, they'll clean the cells up and get them ready to transfuse into Aaron. It turns out that the actual transplant itself is fairly anticlimactic. But it will be emotionally significant for all of us!

May 18th is Day 0. From that point on, it's a watching/waiting game to make sure that Aaron's body regrows Jacob's bone marrow cells. We are so very thankful that Jacob is a full matched sibling - something that gives Aaron's body good chances of accepting the transplant, but with all things body-related, it's impossible to predict exactly how it will go.

Aaron will stay at CHOP in their Transplant Unit for at least 4 weeks after the transplant in order to keep him as protected from as many passing viruses, bacteria, and/or fungi as possible. Aside from straight up rejection of the donor cells, those things are the biggest threat to Aaron's health in these early days. There are so many variables and factors that go into a successful transplant, so we're grateful for a team of doctors who are comprehensive and thorough in their approach!

The hope is that Aaron's body will successfully engraft the new bone marrow cells without complication. Essentially, they are regrowing his entire immune system from scratch in order to remove the majority of the cells that are mutated with the CGD gene. Once he has regrown an immune system with Jacob's cells, he will no longer be subject to the effects of the CGD diagnosis (ongoing infections and system-wide inflammation). The doctors don't like to call it a cure but if everything goes according to plan, for Aaron's day-to-day life, it will function like one. 

Once Aaron is released from the hospital, he'll come back home. The other kids will have wrapped up the school year, so we'll all be laying kind of low this summer while Aaron heals so we can protect him from germs. A healthy kid with an engrafted and brand new immune system by Day 100 is our goal! That takes us right to the end of August and the start of the new school year.

Our plan is to keep this blog updated as we go so that you can follow along with Aaron's progress. As you can imagine, there are so many moving pieces and the situation can change quickly. We've had so many encouraging and uplifting messages from so many of you over the past few months. We figured this was the easiest way to keep all of you up to date on how everything is going! Aaron is also planning to update here with his own thoughts as we go.

So for now, here are the things that are heavy on our minds in the coming days as we prepare. If you want to pray specifically for these things, we would be so grateful!

Surgery on May 10: Aaron will be having a central line placed on May 10th to make for easy access for all his meds and lab draws. We're just hoping for a routine surgery day without any complications.

Chemo Side Effects: I'm sure everyone has some level of experience with the unfortunate side effects of chemo drugs. We're hopeful that Aaron will only have mild side effects that will be manageable with the other meds available at the hospital.

Bone Marrow Harvest for Jacob: Jacob will start getting bone marrow stimulating shots on May 16th to prepare for the harvest. Jacob and Isaac will join us at CHOP early in the morning on May 18th for the harvest procedure. Jacob will be under anesthesia for about two hours while they collect what is needed for the transplant. Jacob is most nervous about any shots or IVs - please pray that all goes smoothly and he's able to be brave during the scary parts!

Engraftment: the biggest obstacle would be if Aaron's body rejects Jacob's bone marrow. We want the cells to engraft, without any signs of rejection OR Graft Versus Host disease (where Jacob's cells attack Aaron's cells). That's the biggest thing!

Protection against Viruses/Bacteria/Fungi: CHOP takes every precaution possible to keep Aaron from getting sick and we're going to be doing our best from our end as well. But his immune system will be very weak and any small, seemingly insignificant virus to us could be really devastating for Aaron in this state.

All the Kids: we're very conscious right now that this will have an impact on all of the kids in our family, not just Aaron & Jacob. The end of the school year is exciting and busy...and this will add a layer of challenge and sadness. We'd love to shield our kids from any of the difficulties we've faced in the past two years, but we're also very aware that these are the kinds of trials in life that help to produce resilience, faith, and perspective. We have such a great community around us to help with all the rides, meals, childcare...carrying on our regular life so we can take a step back to care for Aaron. But if you think of them, please pray that they would feel loved and supported through this as well.