Well hello there! This is Hart writing. This update is kind of long overdue. Plus, if we keep putting this off all these details will become fuzzier and fuzzier.
These last few months have been a wild ride! We are sorry for how long it has taken us to get an update out. But I'm guessing most of you were able to stay updated either via social media and/or through our network of family and friends.
But let's take a moment to recap. On the afternoon of Sunday, Jan. 13, we loaded up both of our cars with 4 months worth of stuff and moved down to Charleston. And then on Tuesday, Jan. 15, we loaded both cars back up (with 4 months worth of stuff) and moved back home, with the incredible news that Judah didn't need to undergo the transplant! So how did we get there?
The week prior to our move date the initial results for Judah’s January biopsy came back and his Chimerism had actually increased. Unlike his previous 2 biopsies which showed this number drop all the way from 100% to 76%, this 3rd biopsy showed an increase of 5%. Now quick explanation of all this (because I know this can be confusing). The Chimerism shows the percentage of donor cells vs his own cells. 100% means it's all the donor. So 76% means 24% was from Judah. That big drop indicated Judah's body was rejecting the transplant. And when they examined the cells from Judah, they saw his chromosomes doing weird abnormal things, which indicated the cancer was returning (more on the chromosome stuff below). Anyways, when we saw this report and that his Chimerism had increased 5% we reached out to Judah’s Dr, but her only response was ‘that’s curious’ and that she needed to get his genetics results back before she could really understand what this might mean. And on that Sunday we moved down to Charleston, the genetics test were still not back, our Dr was stilling saying the 5% increase was curious, and we were heading down wondering what in the world curious meant!
So the timeline for his transplant was going to look like this: That first week down there Judah would undergo several days of of labs and tests. Basically, they need to check all his organs and everything to have a baseline so they can monitor him while he undergoes the chemo and transplant. Later in the week he would have surgery to get his ports (a permanent IV so they don’t have to stick him, and a g-tube, which is a way to pump food and medicine in). We would have the weekend off and then the following Monday (Jan 21) he would be admitted, and that week he would begin receiving chemo to prepare his body for the transplant. After 10 days of chemo he would receive the transplant, and then would begin the 100-day countdown. For roughly the first 30-40 days he would be in the hospital, and then if he was doing well he'd be discharged but then the remainder of the 100 days we were going to live at a ministry house down in Mt Pleasant for families with kids in the hospital. Once we got to the 100 day mark (which would have put us into May), if everything looked good we could go home.
Anyways, that’s what the timeline looked like, and what we had been planning and preparing for since basically October when his Dr said the cancer was returning and he needed another transplant.
We went to MUSC on that Monday, Jan 14, for him to start doing his labs, and we had been there for maybe 3 or so hours. Judah had already undergone several scans when his transplant coordinator came and found us and said Dr H is coming to meet with us. That was odd, or should I say, curious. We weren’t scheduled to meet with her that day, and normally if we were going to meet with her we would have gone to her at the clinic. Eventually, she came and got us and took us to a room where Dr H was waiting for us. We came in and she had us sit down, and she began to explain how chromosomes work. I won't go in to details about chromosomes, but you should look on youtube for videos about chromosomes deleting and balancing...it's pretty fascinating. Anyways, she explained that Judah's 5th chromosome was being deleted, and that was a very strong indicator that his body was developing cancer again. The 5th chromosome being deleted and leading to cancer is so common that it actually has a name; deletion 5-q. So because that Chimerism number had been declining, and Judah was experiencing deletion 5-q, these were very strong signals to Dr H and her team (as well as the Drs at the pediatric hospital in Seattle…which is considered one of the best for children's cancer where we got a 2nd opinion from) that Judah’s cancer was returning and he needed to undergo a 2nd transplant.
She said the 5% increase was curious because that’s more than a fluke. And then she said his most recent genetics report was back and it actually showed that his 5th chromosome had balanced itself. After she explained all that, she said, I’ve never seen this or heard of this happening, but because of this, I’m advising you not to do transplant!!! And then she said, whatever you’re doing, keep doing it, because it’s working. At this point we picked our jaws up off the ground and said we’ve been praying, and we’ll keep praying!
So we went back to the Crossbridge house (where we were staying until he would be admitted) and took the rest of the day off. As you can imagine that day was filled with shock, happy tears, and updating lots of people with the amazing news. We were so worn out from it all we stayed the night at Crossbridge and then loaded up the next morning, and headed back home.
The rest of January and February were a blur. As you can imagine, for months we had mentally prepared for this, we had packed and prepared for this time, and then all of a sudden we were home. So it took a while to get back into a routine. Judah underwent a 2nd biopsy in February and those results showed another 2% increase, and also showed his chromosomes still balanced. With those results Dr H said she would be comfortable waiting for him to come down in May for the next biopsy.
He isn’t out of the woods. The Chimerism number is still low, so we still are trying to figure out what his body is doing? As for his chromosomes. The 5th one is still balanced as of the Feb biopsy (praise God!), but he does have some ‘funky’ ones, as Dr H called them. So because of all this, they still want to continue monitoring him. We’re thankful for this miracle, and we’re hoping and praying that God is going to bring this miracle to completion and let Judah have a long and healthy life. But from Dr H’s perspective, this is so…curious…she really can’t put any timeline or expectations on this. So that means lots of biopsies and labs so they can continue monitoring him.
But at this time we are living, loving, and enjoying life! We celebrated Judah's 5th birthday a couple weeks ago and that was such a sweet reminder of what God has done!
With all that said, we not only wanted to give an update on Judah, but we wanted to say thank you. We were so overwhelmed and blown away by the generosity of so many. Wow. God used all of you and your generosity to help us feel so cared for and loved during this season. From financial gifts and gift cards, to presents and care packages, to meals, and of course all the many prayers. Y’all were so incredibly considerate and generous, and the Lord used that to encourage us in ways you’ll never understand. Those gifts helped cover so many expenses and will help cover all these future labs and biopsies he's going to be undergoing. We also have been able to bless others walking in this similar walk with their children or on the road of battling cancer and pray they were encouraged. Thank you so much for the love and support you gave us. We truly are beyond thankful and give God all the glory for how the body of Christ serves!
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