This afternoon I had a conference call with three of Rowan's Seattle Children's Specialists. We spent nearly an hour discussing what they called "Rowan's next steps", in preparation for our upcoming visit. They are so great at communicating, and I feel blessed to have them involved in Rowan's care, but let's just say it was not exactly the news or plan I was anticipating...
They have thought long and hard about Rowan's unique case, and all of it's special complications, due to his multifaceted health issues. They have spent countless hours pouring over his labs and health records, enlisted the help of many outside specialists, sat with the transplant board, and even presented his case to an "inter-institutional panel of experts". Unfortunately, at this time, the consensus is that the risk of bone marrow transplant is still very complicated for Rowan. I recognize that Rowan is not a typical case, and I am so grateful for their thoroughness and attention to detail. I guess I just thought we were closer to a decision or maybe even the transplant plan and schedule than we actually are though.
Rowan does not have a cut and dry bone marrow failure disorder that they can just simply transplant and fix completely with certainty and ease. Rowan has further complications because he has one of the most complicated GI issues/histories they have ever seen. When you combine a poor functioning gut, that doesn't move well, has bacterial overgrowth, pseudo-obstruction, multiple severe food allergies, malabsorption issues, and pancreatic insufficiency, and a primary b-cell immune deficiency, which makes him extremely immuno-compromised, as well as serious problems making enough neutrophils to help him fight infections, you have what they call: "a recipe for disaster" or "a perfect storm". We have heard this for years. It is why he battles repeat episodes of life-threatening septic infections. It is why he goes into septic shock. Now, it is what they are afraid will be the biggest, life threatening risk to him during transplant. Then, on top of these primary diagnoses, Rowan also has asthma, apnea, migraines, seizures, menieres disease, a Chiari brain malformation, a VP shunt, a g-tube and a central iv line. So, he is not a case they take lightly.
The focus of the conference call today was that there are two areas that they feel need thoroughly worked up, and treated if at all possible, before the transplant board can come up with a decision, plan and timeline for Rowan to undergo a bone marrow transplant from his sister, Zoe. It does not mean that bone marrow transplant is tabled at this time, it just means that they cannot move forward until these other two areas are addressed: intestinal failure and metabolic conditions. So, Rowan has to be seen by Seattle's highly ranked Intestinal Failure Department, as well as their renowned Bio-Chemical Genetics Department. They are setting up appointments and testing with both of these specialists for this next visit to Seattle. If these doctors feel that there is something they can further diagnose and treat, that would better his chances during transplant, then we will have to return to start whatever treatment plan they deem best. If they do not feel that we are really going to be able to change any of those issues, then at least the transplant board will have a better picture of his over all health, and will know how to tackle/approach transplant for him specifically.
This is not necessarily bad news...not even a bump in the road exactly, I guess it is just a detour. It adds several more steps, a trip or two more to Seattle in the interim, and obviously more time overall, which is somewhat frustrating, but I know it is all for Rowan's own good. I hung up feeling grateful for how seriously they were taking his individual case and blessed by how careful they were being with his health, and life... yet slightly deflated by the realization of the extended timeline.
We should know our appointment schedule for this next trip, by early next week. It will just be Rowan and I this time, and unfortunately we won't come home with the transplant decision/time line as we thought. That decision is being postponed. However, I am trying to focus on the positives...the fact that we are being cared for by some of the best doctors in the country, and that they care enough to take these extra steps for our son and our family. Please pray for the visits with these doctors to go well, and for clarity for both the doctors and for us. If something can be done to improve Rowan's chances during transplant, or better yet, to diagnose and fix one or more of his highly complicated health issues in general, that would be such a blessing and a miracle. Finally, please pray with us that: God will keep Rowan safe from harm while we try to figure this all out, that Rowan would stay out of the hospital, that he would not get septic again before we travel, that his fungitell levels would decrease, and drop all the way back down into the normal range, so that he could replace his picc line with another broviac central line before we travel.
Thank you for your continued prayers and support. Things may not be moving as fast as we thought they would be, but they are indeed moving. I just have to keep reminding myself that it is God's timing, not ours. Or as Rowan says, "What's gonna happen is gonna happen, when it's supposed to happen."
No comments:
Post a Comment