A lot more information today. Some days it feels like we’re drowning in medical data and decisions. Michelle and I have been working through the options and doing our best to understand each path using our own research and what we learn from parents who have gone through this, which we then speak to our doctors about and clarify until we feel able to make a decision.
With regard to RIC, we’ve been going back and forth about using that or ablative/high-dose conditioning. One route is the more conservative route that has more successful cases behind it, but greater future danger for Zoe’s health and development. The other is much more modern approach with less patient data to point to, but can result in a very clean, relatively safe cure for Zoe’s condition.
We have pushed Dr. P and our nurse coordinator pretty hard for answers to every possible angle of this in the past few days. We’ve presented other cases of RIC/HLH/Cord Blood patients with very similar protocols but which were not successes and asked them to help us understand what will be different for Zoe. We’ve pressed them for examples of successes with this combination of factors. We’ve asked for numbers on Duke’s track record with this combination as well.
At this point we feel fully satisfied that, for Zoe’s case, for her current condition and the team of people treating her, RIC is the way we should proceed. It’s a tough decision, but this is the direction that feels right.
In recent years there have been a number of advances that will assist Zoe. The team at Duke was the first to do an unrelated cord blood transplant, and they do more than any other institution. That helps our confidence level as well.
Their process includes several additional medications to the standard protocol that help raise the chances of a successful graft, one of the concerns when using RIC with cord blood and likely a factor in the failure to graft in some patients in the past. They know now to continue GVHD medications longer than was once felt necessary, with past cases at various institutions proving clearly that stopping too early can cause the graft to fail.
What we’re seeing is that HLH is a relatively young disease and that, while the treatment phase is well established with the HLH-2004 protocol, the cure phase is still being perfected. This leaves a lot of fear and doubt, and the old saying that if you ask 5 doctors you’ll get 5 answers doesn’t help very much when it starts to ring true.