Happy Transplant Birthday, Boaz! God has been so faithful.
I feel like there’s so much I could write, but I’m unsure where to start. As I was reflecting today on the last year, I was reminded that on Bo’s transplant day last year, I shared updates on how things went, but I never got around to sharing what the actual day was like, so I’d love to do that today!
September 19, 2019 was a Thursday. We woke early and Bo had breakfast. Around 9:15am, Lance and I were out walking the halls with Bo when we saw our transplant case manager walking toward us with a big smile on her face—she shared that Bo’s new marrow had finally arrived and was in the building. I cried big tears of joy and relief. It’s so amazing that our donor gave his marrow in Germany and a courier picked up the marrow and flew it all the way to us in the US. So many pieces had to come together for the timing of everything to work out perfectly—our donor had to get to the hospital, donation had to go well, the courier had to get to the hospital and then to the airport in time to make the flight, the flight had to make it to the US, and the courier had to make it safely to our hospital. Looking back, God’s hand was so clearly over every single detail of the process.
Our nurses had prepared us that the infusion itself would be anticlimactic—they give the new marrow to Bo like they would a normal blood transfusion, right through his central line. We were blessed to have 2 of our pastors there that morning when Bo’s marrow arrived. We were able to hold it in the bag and lay hands on it praying over it and blessing it. Our prayer was that God would bless Boaz’ new marrow, that it would only ever bring his body life and health and that God would do mighty things through this new blood. Just like Christ’s blood cleanses us from our sins and is good once for all time, our prayer was that this new marrow would cleanse Boaz’ body of any bad blood and would be good once for all time– bringing him new life. It’s incredible to me how a bone marrow transplant mirrors the gospel. It brings tears every time I think about it.
Bo received his new marrow shortly after 11am. They gave Bo a big dose of Benadryl 20 minutes before his transplant to counteract any sort of allergic reaction he could have from the donor’s marrow. They observed him very closely through the entire transfusion. Because of the Benadryl, Bo slept through everything. We had worship playing in our room the entire time—it took about a full hour for the transfusion. Our nurse worked quietly monitoring Bo and our room was filled with peace. Other than a higher than normal blood pressure, Bo did great. His blood pressure went up because of the sheer volume of marrow he received but they watched it closely the rest of the day and it eventually came back down on its own.
Once Bo woke up from his Benadryl nap, he was ready to party! We had brought some birthday balloons with us to the hospital and we blew them up for him and he had a ball!!!! It was such a relief to have the actual transplant behind us. As I shared on here the week leading up to transplant, I had been so incredibly anxious. So many moving pieces had to line up perfectly to get us to where we were that day and God had so faithfully taken care of it all—because that’s what he does and who He is.
I’m so thankful to have been able to draw from that well of remembering God’s faithfulness. Little did we know, Bo would get very, very sick a week later. During our hard weeks in the PICU when we didn’t know if Bo would recover and things felt heavy and dark, I would remind myself of how far God had brought us—the mountains he made low to bring us to where we were. He didn’t leave us. He restored and healed. He comforted.
And here we are today. A whole year later. Our Boaz, a thriving 2 year old. Something exciting that we haven’t shared on here yet is that we heard from Bo’s donor for the first time back in May. It was so unexpected. Of course we had hoped we would hear from him at some point, but we kept our expectations very low. In his letter, he expressed how glad he was that he donated and that he hoped that our son was still doing well. He let us know that he was doing well and is a busy university student. He requested further updates and hoped our family was safe and doing well in the midst of the pandemic. It’s very interesting corresponding with someone we don’t know and having to do it anonymously. In his letter, he shared his age and what part of Germany he is from, but both were redacted. When we write our letters, we have to share things carefully—we aren’t allowed to write anything too specific. No names, ages, birthdays, cities, or even identifying landmarks. We assumed because we knew his age that he would know Bo’s age, but it appears that he wasn’t given that information. We have written him 2 letter so far—the first we sent a few days after Bo’s transplant and the second was in response to his letter. We have tried to communicate some things in different ways, by saying things like “Our son is a very active toddler” (to avoid giving an exact age but to communicate that he is young). We’ve also shared that since transplant, Bo has learned to walk, run, and climb, also indicating that he’s young. Per Germany’s rules for donor/recipient relationships, we have to wait 2 years until we have the option to exchange any sort of personal information. We of course want to know Bo’s donor, so the ball is in his court! We hope and pray he desires to know Bo and our family. We have one more year to go until that’s a possibility!
We cannot observe today without thanking God for all of you who prayed Bo and our family through this last year. You held up our arms when we couldn’t hold them up ourselves. We stood on your faith when ours felt depleted. You prayed when we didn’t know what or how to pray. It is so incredibly humbling to think of the thousands of prayers that have been prayed from all around the world, and we hear from many of you that you are still praying. Thank you, thank you, thank you. Although Bo is continuing to do well, we still covet your prayers for him and our family. We love you all so very much.
A little life update: We are still staying home and practicing social distancing. We have figured out some creative ways to have fellowship here and there—outdoor visits with friends and we all sit several feet away from one another. It’s been life giving to have time like that even though it looks different right now. Also, our church hosted a drive in worship service which was so wonderful! We are looking forward to more of that.
Naomi started kindergarten and it has been so much fun! Our hope has always been to homeschool, so it’s been nice to have so many others doing the same in this season. She is thriving and learning so much. Her little brain is like a sponge! We are working on scripture memory, catechisms, poetry, art, handwriting, and some basic sight words and counting. She’s itching to read and I love her excitement!
The last 10 days have been especially hard because of all of the smoke from the wildfires our state has been experiencing. Dealing with the smoke was hard, but nothing close to those who have lost everything. We are thankful to have a home with good air filters that kept us safe from the smoke. We didn’t experience any adverse effects from the smoke and are thankful. Today was the first day the kids were able to be run around outside in 10 days and it was so life giving! May we never take clean air for granted!
We have Bo’s monthly appointment coming up on Monday and if I’m honest, I’m nervous. I always have nerves leading up to his appointments. Part of it is trauma—I fear being thrown back into the fight again. It feels like our life at home can be ripped away at any moment. I’m praying that God will continue to heal my heart and my mind and that I can believe and trust that He is still sustaining and holding us in these hard days leading up to appointments. Will you please pray for me?
On Monday, in addition to Bo’s normal blood test, they’ll be doing a heart ECHO. The chemo Bo had can have long term effects on the heart, so every year they’ll do an ECHO to see how things are. We are praying for good results! Back in July, they did an ultrasound on Bo’s liver and gallbladder to check to see how things were going. Sadly, they discovered that Bo has gallstones. This is a result of Bo’s liver blockage from last year. Although they were able to get his liver unblocked, his body still wasn’t able to move the “sludge” through his gallbladder efficiently enough and some of it turned into stones. Thankfully, they’re tiny and Bo’s gallbladder will grow as he grows and hopefully they’ll never cause any issues. His doctor isn’t too worried, but is glad they are aware of it and she told me symptoms to be aware of should the gallstones every cause a problem. This means he’ll continue to stay on the liver medication in hopes that it prevents any further stones from forming and could even possibly help to break down the ones that formed.
This will also be the first appointment Bo has had post-line removal, so this is the first time he’ll have to be poked for his blood draw. I’m sad that this is his reality. Will you please be praying that God’s peace will be over him and that the draw is done quickly and easily with no trauma? Our boy is so brave.
Thank you again for your faithful prayers. We’re so incredibly grateful to God for surrounding us with His people.
To God Be The Glory.