We’re headed to Duke in March! Duke has been conducting research to develop new treatments to help children with brain injuries and certain neurologic conditions using umbilical cord blood cells for a number of years. I first learned about this probably about four years ago. At the time, Duke was only using autologous (one's own) or sibling cord blood, neither of which we had. But I filed the information away in case we ever had another child. When we got pregnant with Cara, I reached out to Duke and then took all of the necessary steps to bank her cord blood for the purpose of using it there. We made all of the arrangements, I gave Sean many lectures about how it was his job to make sure that the medical staff remembered to get the cord blood (since I would be otherwise occupied!), I went over it with my midwife in detail. All went well, and I was excited about this potential opportunity for Hannah. Then Duke told us that there weren’t enough cells in the sample. I cried. We went to a concert the evening that we found out, and I just kept crying the whole time. It was never a for-sure thing, but it seemed like another door closing. It seemed unlikely that we would have more children, and I felt so disappointed that Hannah wouldn’t get this opportunity. When you have a disabled child, you want to leave no stone unturned. You want to know that you’ve done everything possible. When you know about something that could help, and it’s just out of reach, it’s heartbreaking. 

Fast forward to this past July. We got an email saying that they were now opening it up to donor cord blood. Since then, we’ve been filling out the required paperwork, requesting and submitting the medical records, and getting labs, and they’ve determined that Hannah is a good candidate! God heard my cries and answered my prayers. A second chance. 

I’ve spoken with several parents of other kids who have received this treatment, and they have seen some important gains in cognition, vision, motor skills, and communication, and the treatment is generally well tolerated. It usually takes several months to see gains, and it is recommended to do intensive therapy in that timeframe to maximize potential. It’s not a miracle, and it certainly won’t “cure” Hannah of her disabilities. But it may help her make some progress, and we’ll take any help that we can get. Almost every parent I’ve spoken with said that they would do it again. So we think that it is worth a shot. 

Although Duke has been doing this for over a decade, these things take time, so this treatment is not yet FDA-approved. Because of this, it will not be covered by insurance, and the cost is $15,000. (This is the cost when using sibling cord blood, as well. The cost is not for the blood/tissue; it’s for the infusion itself.) 

We are so grateful to everyone who has given generously to us over this past year. We have been putting all gifts toward our medical expenses and saving anything that has been left over for this purpose. In addition to the $15,000, we also have to pay for some labs out of pocket, as well as travel to Duke and to stay there for several days (though we have found a generous person through our church connections who has a place where we think we can stay!). We will also need to maximize the potential by increasing Hannah’s therapies, traveling to go to an intensive therapy, and possibly adding in another specialized therapy that is also not covered by insurance. It’s also possible that the donor sample that Hannah receives will be large enough for her to do a second infusion in a few months. That would be an additional $15,000. So, needless to say, this is a huge expense for our family. But we’re excited about the opportunity.

As God’s providence would have it, Hannah had “won” an intensive therapy “camp” last December. (She won this opportunity through Walking With Cora, a great foundation, and the camp is at KinActive Kids in Texas, where we have done an intensive therapy before.) We had planned to go to camp last June, but we had to cancel due to my treatment. Walking With Cora and KinActive Kids both graciously said that we could reschedule at a time that would be better for us. (And the scheduler at KinActive happens to be a lymphoma survivor who has undergone the same treatment that I did, and she has been checking in on me, offering support, etc.! Such a great connection!) If we had gone in June, we would have to pay out of pocket for another intensive after receiving the stem cell treatment. Now we can use this gift and hopefully go at a time when we can maximize benefits. I had been so disappointed that we couldn’t go to KinActive in June. Once again, God worked the timing out perfectly, and we are getting a second chance. 

If you feel called to give financially to help us with this cost, you can do so here. You can also give via Venmo or Paypal or Zelle or the old-fashioned way by mailing a check. Reach out to us if you need help accessing one of those other ways. (Unfortunately, there’s no way to reflect outside gifts on this platform, but if you give another way, there are no processing fees. It won’t be reflected in our goal here, but it will absolutely be used toward our costs.) Thank you for helping make this possible for Hannah. 

As always, the prayers are most important. Please pray that Hannah would stay healthy before and after her treatment and that all would go smoothly. Please pray that we can coordinate any intensives and all that is involved in that. And, of course, please pray that we would see some helpful gains over the coming months. Every little step matters.