BMT: Isolation (Day +48)

Today was Clark’s monthly follow-up at the doctors. It was supposed to be weekly, but Clark has been doing so well, they have decided “less is more”.  It had been 3 whole weeks since our last visit!! How great is that!?

Mondays are Clark’s regular days for a bandage change, blood draw and cap change (the little caps on the ends of his broviac lines). And since his doctors appointment happened to fall on a Monday, we decided to have it all done at UCSF! This way the nurses could help with our least favorite activity.  Any guess on what our least favorite activity is??  Answer: the bandage change.

When Clark had his double lumen broviac (aka “Powerline”) placed, they held the line in with 2 stitches to prevent his line from easily being tugged out. One of the stitches fell out 2 weeks ago, and the second was tugging his skin, creating a red irritated callous. So today, during his bandage change, one of the nurses cut the second stitch, and replaced it with a stat lock.  A stat lock is a sticky clamp thing, that happens to be in the shape of a bear. (so cute!!).   So far I like it much better than the stiches, and think it will do a better job holding Clark’s broviac. That said, we’ll see how it does next Monday when we have to change it with his bandage change. :)  Adhesives and skin simply do not mix!

The doctor did a thorough evaluation on Clark, checking him for rashes, going over his medication, answering all of my questions and even making sure I had the 24 hour phone number for specific hemophilia needs.  All of this went very, very well.

It turned out to be a very long appointment since Clark was also given IVIG, a blood product containing antibodies to help Clark’s weakened immune system. The IVIG is slowly given through Clark’s broviac over 2 a hour period.  IVIG is actually a product that is made from donor blood.  I had no idea this was something that people are able to donate, but I am eternally grateful since this tiny dose of IVIG will help Clark get through another month. Thank you donors!!!

Clark has been on  2 immuno-suppressant drugs, Cellcept and Cyclosporin (aka Cyc) since his BMT. These help prevent GvHD. We have tapered him off of Cellcept, with his last dose administered on October 1st! It is so wonderful to be done with this medicine, as it was a bit tricky to administer. It had to be given 3 times a day, and his doses had to be at least an hour apart from receiving his 2 doses of Cyc. This created a schedule of round-the-clock medicines.  Clark has now increased his Cyc  to 3 times per day, but I have a bit more flexibility with timing since we no longer give Cellcept. And to make it even easier, the taper for his Cyc starts today! It is a very slow taper, but he will be finished by the end of November. Overall, Clark’s daily meds have become a lot more manageable now since he only takes a few in the morning and 1 in the evenings, plus one at 1am.

On a related but different topic… We just got the referral from the doctor to have Patrick and I tested for Dyskaratosis (DKC). We were told months ago that this is a genetic mutation, and not hereditary, especially since neither Patrick nor myself show any symptoms.  But this isn’t completely true.  Since then, we have spoken to a ton of specialists and have been reading up on DKC, and apparently it is something that one of us could be passing on, even though we don’t show symptoms. This is such a rare and unknown disease, that most doctors don’t really understand it.  So we’ve learned that there is a chance that one of us may be carrying the gene, or even have short telemeres, and thus could be able to pass on to our children.  So off we go to get tested.

On the home front, Clark and Connor continue to enjoy each others company. They even chase each other around the house to give hugs. It’s so wonderfully adorable, if you ask me.