Thank you everyone for waiting so patiently for me to post the medical update from the Seattle Children's Hospital trip that we just returned from. It is a lot to take in as always, and to process ourselves as a family, plus we had a lot of appointments as soon as we returned here to Texas too, but I think I am finally ready to summarize the visit for you all :)
First let me answer the question I know is at the forefront of everyone's mind: No, Rowan was not medically cleared for bone marrow transplant at this time. They are still too concerned with his gi health. We did however, meet with 2 new specialists who have given us hope that they can help get him to that point, or to help better diagnose him genetically, which will help them know how to treat him or how to approach transplant in a way that is safest for him. So, here is what we found out and what we will be doing for the next few months.
1. First, we met with an intestinal failure/motility specialist.
Originally, this doctor was supposed to have Rowan admitted for a couple of days while we were there, for some highly sensitive motility testing that would test the nerves and muscles all along his gi tract, to see which portions of his intestines work and which sections do not. After reading about Rowan's past scopes though and his chronic neutrapenia, she decided the test was way too risky though. She ran the risk of perforating or puncturing the lining of his intestines, which could cause immediate sepsis and even death. She told me she was not willing to take that risk just for some information. I have to say, I agreed and it gave me great confidence in her as well. She definitely had Rowan's health and safety first. If this is what she does, and how she makes her money, and she was saying no, that says a lot.
As we first started to talk, she initially thought that maybe they should do the bone marrow transplant first, because it would actually help his gut health too. After going over his whole medical history though, she came up with three things that she felt we could try first, to get his gi health in a better place. She will be discussing the three changes with our gi doctor back home, and we will hopefully be implementing them soon, and see a change is his gi health. One of them is a new medicine to help with gastric emptying, the second is to begin Remicaid infusions (often used for Crohn's Disease) to help heal his intestines, and the third is to have surgery to have a jejunostomy. Unfortunately, Rowan cannot keep a gj in (we have tried multiple times in the past), and his g-tube feeds are not as successful as they need to be. So, it is her hope that by healing the intestines, moving the feeds through his system better, and bypassing his stomach, feeding into the intestines (through the j- tube), that we will see progress in feeds and an improvement in his gi health. Rowan's anatomy is such that this surgery will require a general surgeon to pull a loop of bowel out, closer to the wall of his abdomen, and have the j-tube placed into it. Please pray that we can get this all ordered and scheduled soon, and that his counts come up high enough to protect him during the surgery.
2. Second, we met with the head of Seattle's biochemical genetics department.
As we first talked, he initially wasn't sure how much he would be able to find or do for Rowan. However, once again, after going over his complete medical history, he said that he had changed his mind completely. He said that Rowan has one of the most "impressive" histories he has ever seen, and that given the number of systems affected, and the extent of his compromised health, he felt he could justify three of the most in depth genetic tests available. He felt that Rowan was one of the most unique patients he had ever seen, with some prior results that he had never seen in his entire career. Because of all of this, he just didn't feel that there was a way that one child could have so many things wrong and there not be some sort of greater underlying diagnosis. Shwachman Diamond only covers a few of Rowan's health issues, so he wants to expand our scope. This doctor thinks he should be able to find more answers by casting this larger net. Now, these tests are very expensive, hard to get approved by insurance, and take a long time to process. Please be praying that insurance will cover them, and that we do get some answers, or at least clues from the tests. He went ahead and banked DNA from both Rowan and myself while we were there, and will start the testing as soon as they find out about the insurance decision. Then, it will take about four months for the results to come back. It is his hope that these tests will give him some clues about Rowan's genetic make-up that will help them better treat him, or best prepare for his bone marrow transplant. He wants Rowan back this Summer to go over the results of the genetic testing.
3. Third, we met with the hematologist/bone marrow failure specialist.
As always, she is so thoughtful and thorough, and we truly feel that we are in great hands with her and the rest of the team of physicians that she has assembled for Rowan. She is still hopeful that they can better Rowan's gut health, either in an effort to cut down on his infections and prolong transplant, or to better prepare him to receive the transplant soon. She did insist that we boost Rowan's neupogen and ivig regimen before he goes in for the gi surgery, to best protect him from the risks of surgery related infections and/or sepsis. She also ordered some more lab work while we were there, and wants him to return for his annual bone marrow biopsy this Summer.
4. Fourth, we met with the immunology specialist.
Again, we just love this doctor as well. She let me know that she couldn't be happier about where Rowan's igG levels have been, since we started the increased dose and the increased frequency of ivig infusions. However, she does not like that these higher than normal levels are still not preventing him from getting sick. She wants Rowan to receive Synagis this coming year before RSV season, since he got RSV this year. He received Synagis as an infant, but we stopped once he got older. She also said that she has done what she can to help get his immune system up, and that if these infections keep recurring, and the gi changes do not cause marked improvements, that she is pushing for the bone marrow transplant sooner than later. At the end of our appointment she let me know that she does not want to still be sitting in an office talking about this net year. She did order some repeat labs to check his other immuno-globulin levels and will see us back this Summer as well.
5. Finally, Rowan had lots and lots of labwork : blood taken and urinalysis done.
Some of the results are already back, some will take days or weeks, and as I mentioned, the genetic tests will take months. The only immediate results we got were that he was anemic, and that he had too many immature red blood cells. This is all likely from the chronic gi bleeding that Rowan has. Thankfully, his neutrophils had come up while we were there (with the increased daily neupogen that she put us on while we were traveling), but the labs from yesterday in clinic back here at home showed that he was neutropenic again. Likewise, the test they did for yeast antibodies in his blood appeared normal there, but once we returned home to Texas, yesterday's fungitell test shows that it is still over 3 times the acceptable limit. We will continue to get weekly labs, checking his blood counts, metabolic panel, liver function, iron, igG, and fungitell levels.
If I had to summarize things, I would say that all in all it was a good trip. The general consensus was that they were all very happy that we have Zoe as a sibling match, as that is often half the battle. It was of course unfortunate that the gi testing had to be cancelled, but it was for Rowan's safety. We love and trust all of the new doctors, as well as the ones we have seen on our two previous trips. We look forward to trying the new gi suggestions, and hope they make a difference. We cannot wait to get the genetics results back, to see if they can help us "figure out" this kid's unique health issues and give him a final diagnosis. While we may not have come home with a decision or exact timeline for transplant, we did come home with the comfort of knowing that these doctors are working together, trying a few more things, testing everything possible, and that they will then make the best, most informed decision for Rowan. It is my hope that we will be able to see a difference in the gi issues by August, which is when we need to return to Seattle for his bone marrow biopsy and for the results of the genetic tests. So, hopefully, August will be our target date for a transplant decision. We will be hoping and praying that they will feel he is transplant ready by then, or that they have figured out something else to help him have a better prognosis and quality of life, without the risk of these life threatening septic infections that plague him.
Thank you for your continued support. We couldn't do all this without your constant prayers and uplifting encouragement. Thank you to Lorraine Patterson for setting up the account for Rowan's medical bills and travel expenses, and to everyone who donated to Rowan's Medical Go Fund Me, thank you from the bottom of our hearts. Since this was our third trip there in the past 12 months, and we now know we will be going back again very soon, your overwhelming support was a God-send and so greatly appreciated!
Please be praying for Rowan's health in the interim, for meaningful test results, expedited open communication between our doctors here and in Seattle, a safe infection free gi surgery, and clarity of minds as they make the final decisions by this Summer.
Thank you!
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