Life

Some days it occurs to me more than others that sometimes life just isn’t easy. Today was one of those days. The morning was fine as Trey’s Speech & Language Pathologist (SLP) noticed that Trey is combining words more easily and is pronouncing the ends of words much better than he was before our trip. And after seeing Trey’s SLP we had some down time at Kinder Gym.
It was the afternoon with Dr. Schultz, the transplant doctor at BCCH that made me go hmmm. Since this entry is so long, I’ll cut it into 2 parts: Part One is our meeting with Dr. Schultz and Part Two is the rest of our week.
Part One: After Trey’s nap, Trey and I left Avery at home with Grandma (Ry’s mom), and headed out for our meeting with Dr. Schultz. As a result of our meeting with the transplant doctors at Duke (for details see entry ‘Final Appointments at Duke’), we made the decision that if we did proceed with CBT, we would do it at Duke. Dr. Schultz had a different opinion. He believes (at this point, although he did agree to talk to more doctors and do more research) that Trey’s transplant could be done just as safely at BCCH as it could be done at Duke. This affects us because if we wanted to do the transplant at Duke and have it paid for, we would need Dr. Schultz to apply to the BC government on our behalf explaining that the transplant could not be done here. He also thinks it is important to proceed with transplant as soon as possible, based on evidence from other diseases. So, he’s going to talk to Dr. Escolar and find out about Duke’s recommendation to wait.
Probably the most controversial part of the meeting for me was what type of transplant to do: Bone Marrow (BMT) or Cord Blood (CBT). From everything I have read and heard about, BMT’s are out of the question. No one even does them anymore on kids with Hunter Syndrome because they don’t work . Dr. Schultz also had a differing opinion here. If he were to do the transplant, he’d want to consider a related BMT before a CBT. His reasoning behind this is because he does not think there is a difference between Cord Blood and Bone Marrow transplantation, especially since the Bone Marrow donor would Avery (we do not yet know if he is a match…1 in 4 chance…HLA typing will be done next week). The idea being that Avery’s Bone Marrow is young. He brought up published research from leukodystrophies (MLD, ALD, and Krabbe) and MPS I, which does not suggest Cord Blood is better than Bone Marrow. He thinks that the reason BMT’s didn’t work for Hunter’s in the past (very few transplants were ever done on kids with Hunter’s), but quite possibly will now (and he also thinks is the reason CBT’s seem to be working on kids with Hunter’s now), is because of improvements in transplantation procedure.
The reasons he likes related BMT over CBT is the reduced chance of GVHD and the reduced chance of the Bone Marrow not engrafting. His stats were that related BMT has a less than 1% chance of not engrafting and CBT has a 5-10% chance of not engrafting. What’s interesting to me is that the reason he’s even considering transplantation with Trey is because of the promising research coming out of Duke regarding CBT’s on kids with Hunter Syndrome.
Dr. Schultz also talked about transplant not helping joints, ligaments and bones. Now I’m wondering if Trey will need ERT post-transplant after all. So after Dr. Schultz and I talked for 2 hours and after Trey covered the floor with popcorn, drawings, and toys, we decided to meet again in one month. On December 15 we will make final decisions regarding whether or not to transplant, what kind of transplant to do, where to do it and when.
Part Two: Here’s a summary of the rest of our appointments this week. Tuesday we saw or Homeopath, Lauri Dack, who started Trey on a new remedy.
Wednesday was our ENT appointment with Dr. Moxham who gave us our new and more exciting appointment time for Trey’s tube surgery (this Monday). After our appointment with Dr. Moxham we headed over to Second Cup in the main part of BCCH and met Jayne from the BCCH Foundation. She took us up to the second floor where Trey had a photo shoot for the Foundation (look for his pictures in the upcoming BCCHF Lottery campaign).
Thursday we saw our Osteopath, Caroline. If you’re not interested in details, skip this part, but basically, what Caroline does is get the fluids in Trey’s body moving. One of the complications with kids who have MPS is communicating hydrocephalus. From my understanding, communicating hydrocephalus is a build-up of fluid surrounding the brain. This fluid build-up causes increased pressure on the brain and eventually squishes the brain causing a whole range of problems from headaches to brain cell destruction and loss. The fluid builds up in the brain because in some kids who have MPS, the fluids don’t circulate well.
When Caroline first started seeing Trey, she said the fluids in his head were barely moving. Currently she has them moving quite well (although she says she’d like them moving a bit better), but she’s having trouble getting the fluid in the sacrum moving. Although, she did say that she was making progress after this appointment.
Thursday afternoon we saw our Naturopath, Jason Hughes. For the past month we have been doing something called the Harmonizing Protocol. It focuses on draining toxins from the body. In the past couple of weeks, Ry and I (as well as other family members) have noticed that Trey’s belly has gotten substantially smaller. Dr. Hughes attributes Trey’s smaller tummy to the toxins beginning to drain and was quite happy with Trey’s progress.
And not directly related to Naturopathy, but in a similar realm, we have started Trey on Goji juice. Ry’s cousin told us about it. We have read up on it and also asked Dr. Hughes about it. He spoke very highly of it, and from what I’ve read it can help with and possibly cure everything from arthritis and gout to cancer, diabetes and heart disease. It sounds pretty amazing and seems to help pretty quickly. So maybe this weekend we’ll try to relax before another bout of appointments next week.