BMT: Chemo (Day -3)

We woke up to a bit of confusion this morning. Our nurse showed up at 6am dressed to give Clark some chemotherapy.  We weren’t expecting his Cytoxan until 8am, so we asked what was going on.  She told us that Clark was scheduled to get another chemo called Cellcept.  Since this was the first time Patrick and I had heard of this, we were concerned.  We thought there were only 3 chemos, and that he was on the last one.  Where had this 4th one come from!?  After having the nurses triple check, sure enough this was prescribed and expected by the doctors. So we conceded and went with it.

After doing some checking, I came across a fairly recent clinical trial for DKC patients receiving BMTs, where researchers are trying a new cocktail of chemo to reduce the post-transplant complications.  Sure enough, all 3 of Clark’s chemos (Fludarabine, Campath, Cytoxan) were there, as well as a fourth… Cellcept!  It turns out that Cellcept isn’t a “chemo” exactly, it is more of a protection against GvHD, which is one of the big issues with DKC patients who receive bone marrow transplants.

So… if there was any question as to how bleeding edge the treatment that Clark is receiving is, the answer is right there.  The clinical trial was started in 2012 and is scheduled to be completed in 2032.  The study is being lead by the Childrens Hospital Boston.  Patrick and I are curious if we are possibly contributing to this study with Clark’s progress?  There was way too much paperwork at the start of the BMT, so it is very possible we agreed to feed our information to this study.  Our hope is that we are, so other DKC children can benefit from our experience.

Which brings me to one of the topics I wanted to talk about today.  I would like to give a huge “thank you” to Clark’s UCSF nurses. From what I understand, each nurse works a 12 hour shift (2-3 shifts per week). During their shift, they are responsible for only 2 patients. This way each BMT patient has the constant care needed, while making sure the nurse is fully aware of their patients individual needs. Not only do these wonderful nurses check vitals, administer medicines (while understanding the computers and machines used to administer), change bandages, clean up vomit, and change linens but they also open up and go through every single diaper to make sure there is no cause for concern.  And with all this, they try to be as caring and understanding of the patient and parent’s needs and concerns. These are only a few things I have noticed from the nurses, I am sure they do a lot more behind the scenes as well. Regardless – I really appreciate all that they are doing for Clark!!  THANK YOU!