We are back from Duke and happy to report that all went well! Hannah was an absolute champ during our travels. She was content the whole way down and the whole way back. Just giggling and playing and listening to her tunes. This was no doubt the result of prayer, so thank you. We also had a great place to stay, thanks to the generosity of strangers! It was perfect for us, very close to the hospital, and Hannah loved it there. Another answered prayer. (Cara also did well while she was being spoiled at the grandparents’, which was a huge help to us. Being able to focus on Hannah was such a gift.) 

We arrived late Sunday evening and then made it to Duke early Monday morning. Hannah was examined and had some labs drawn. We then picked up some food and headed back to rest for the rest of the evening. We went back to the hospital on Tuesday morning for her infusion. Everything went very quickly. Sometimes you have to wait for the IV team, for the cells to arrive from the lab, or for the doctor, but everyone was ready immediately. Hannah also received a private concert from the music therapist, which she enjoyed. She was a little crabby that morning, so getting the IV in was a bit of a challenge, but once it was in, she did very well. The team at Duke was top-notch and great to work with. They answered all of our questions and shared more about their research. Hannah received Benadryl and steroids in her IV as pre-medication. While she was receiving the infusion, she was watched closely the whole time by an RN, an NP, and the doctor. An allergic reaction is a possibility (not to the cells, but to the preservative), but Hannah did just fine. After we were done, we rested for the day. The next day, we had to check in at the hospital and then we enjoyed a bit of time at the park. We headed home the following morning. 

Hannah received 31 million cells per kilo, and the donor unit was large enough that we are eligible to do another infusion if we want to. Thanks to everyone’s generosity, we are able to consider that. If we do that, it will likely be sometime in the fall. We should be able to see some gains from this infusion within 3-6 months, but they can appear even 1-2 years later. They said that the cells don’t cross the blood-brain barrier. Instead, they theorize that the cells are processed in the liver, and the liver sends signals to the brain to repair itself. This signaling continues long after the immune system has gotten rid of the cells. When they have done functional MRIs on patients during the trials, they were able to see a lot more connections happening post-cells when compared to the fMRI done pre-cells. God’s creation is truly incredible. Please pray that this research would continue. Duke said that they are in the phase where the research needs to be replicated at another institution. They are also in need of a foundation to give them what they need to complete (and expand!) this research. While we can’t help them with that, we can pray for God to provide! There is a lot of promise here and much more to discover. 

The gains seen can really vary. And I imagine that to people on the outside, it may not seem “worth it.” But, the reality is, until you’re in it, you don’t know what would be “worth it” to you. When your child has hundreds or thousands of words, the addition or loss of one is inconsequential. But when they have none, it’s everything. If Hannah could have one reliable, meaningful word, it would be worth it. If she could hold her own cup and drink reliably, it would be worth it. If she could navigate stairs safely, it would be worth it. If she could see something that she can’t see now, it would be worth it. We’re excited to see what God has in store for her and the ways in which he will be glorified through her. 

We are so thankful to have this completed. We are now turning our focus to this week, which is a busy one. We are meeting with her new ABA provider to go over goals and a plan. We have her annual IEP meeting, which is always a bit stressful. She has a developmental behavioral pediatrician appointment. And then, of course, we have her surgery on Thursday. We will stay overnight at the hospital that night (and likely stay in a hotel the night before). She will be receiving a g-tube, as well as having an anorectal manometry procedure. I am definitely more anxious about this than I was about the stem cell infusion (which was more exciting). I don’t know how she’s going to react to the tube. Please pray that all would go well, that we would all adjust to this new normal pretty easily, that Hannah would not pull the tube out, and that she would thrive as she grows more. We will update you following the surgery.

Looking ahead to the following week, I would appreciate prayers for my CT scan. I am really hopeful that I continue to show NED (no evidence of disease). Obviously, if my cancer is back, life will take another sharp turn. We would love to be able to keep our focus on our girls. So prayers for good results and for my "scanxiety" would be much appreciated!

Once again, thank you for your prayers and financial support! We couldn’t do this without you!