So you know the feeling when you have a doctors appointment and the first step is to take a seat in the little 10×10 waiting room that smells a little funny and undoubtedly has some sort of 1970’s decor still lingering? Occasionally someone pops there head out to say “the doctor will be with you shortly” or “please fill this out while you wait” but other than that you just twiddle your thumbs…yeah that’s what we are doing. Our room is basically a waiting room but instead of last months magazines and bold printed chairs there is a bed and a crib.
There hasn’t been much change since we got here other than more tests have been run giving us more results to wait for. They have not yet determined which form of SCID Riley has, I believe there are about 14 known forms and as of now she doesn’t seem to fall in line with any of them. She is their little mystery SCID kid 🙂 The “cure” no matter what form she ends up falling into or if she is some new undiscovered case will still be the bone marrow transplant so we will be going on forward with that as treatment in the meantime.
Chris and I met with one of the bone marrow transplant doctors on Thursday and spent about 2 hours in what felt like the end of one of those prescription commercials where they tell you EVERYTHING that could possibly happen. The doctor was amazingly thorough and really had a way of breaking down all the crazy medical jargon in a way that we could follow. We had tested Presley the week before because as a sibling she had a chance of being 100% match which would make her the best immediate donor option for Riley. The results came back and Presley is not a match. Feelings on that were mixed…obviously some dissapointment because now the search for the next best thing begins but with that there was an overwhelming sense of relief. This is all heavy enough so putting our healthy 3 year old through procedures to help save our newborn was a moral/emotional rollercoaster I am pretty glad we won’t have to ride. That being said, they have now started searching the bone marrow registry to see if there is an unrelated donor that could potentially be a 100% match. If they are unable to find someone or the process takes too long then we will be going with either Chris or myself as the donor. Chris and I are both half matches (simply because we are her parents) this type of transplant is what they call a haploidentical transplant. They are very optimistic on the results whether we end up finding an unrelated donor or going with one of us there are just many different variables that play into it and options that will be weighed over the coming weeks.
At this point we are probably still 3-4 weeks out from transplant and looking at anywhere from 4 weeks to 6 months here at UCSF post transplant. As far as Riley’s day to day condition…she is perfection…developing right along like a normal 6 week old. She weighed in at 10 pounds 2 ounces this morning, she eats great and poops even better. Her smile and little sounds are more adorable by the minute and I simply can’t get enough of her newly developed rolls.
Again there are really no words to describe how grateful we are for all the support we have recieved. I will continue to do my best in keeping everyone up to date on the latest.
I have attached the link below if you would like to donate or share the donation page with your email contacts or social media channels, thank you again.