September 4, 2013

Riley remains stable and cute as can be in our little quarters here at UCSF. All of her vitals remain normal, she is a great eater and is continuing to gain weight at the rate of about 22 grams per day which is fantastic. She is growing like a weed, so much so she outgrew her crib and traded up for the bigger model. Just when we thought this room couldn’t get any smaller she went and necessitated a bigger bed, little stinker. 😉 A blood draw to check blood counts, monitor organ function and do an overall assesment of her was done yesterday, all levels seem to be unchanged. Image

Last week they started her on Bactrim which is an antibiotic used to treat bacterial infections such as ear, urine and respiratory as well as a specific type of pneumonia known as pneumocystis. Yesterday she began taking Fluconazole, an antibiotic used to treat fungal infections such as yeast or thrush as well as another antibiotic called Acyclovir which is used to treat viruses in the herpes family like chicken pox and shingles. She is still receiving Vitamin D and Iron daily. These are all oral medications which so far she takes like a champ and smells like a big ol’ piece of fruity flavored bubblegum afterwards 🙂

They will be placing an IV tomorrow so that she can recieve her second infusion of immunogloulin. This treatment known as IVIG is a plasma protein replacement therapy for immune deficient patients unable to produce their own antibodies. Since Riley’s little body is lacking an immune system this helps maintain adequate antibody levels to prevent infections.

Dr. Puck met with the bone marrow transplant team this afternoon to further discuss the plan for Riley. They believe there are some good options for an unrelated donor but are awaiting additional samples and further testing. The team is thinking we may be ready to move up to transplant floor around the 14th of October where Riley will begin the next step of her journey. Prior to transplant there is a process known as “conditioning” and what it entails varies depending on the patient, disease, etc…as of today the plan for Riley’s conditioning will be a round of chemotherapy. We were hoping to avoid chemo however at this stage the doctors feel it will be the most effective form of conditioning for her. While this may change it is the most up to date information I have. Once a donor is secured we will have extensive meetings with both the immunology team as well as the transplant team where all options will be discussed.

I want to thank everyone again for the support and encouragement we have recieved and urge you all to continue keeping us in your daily thoughts.

For donations visit

Our dear friend and favorite photographer Meg Perotti was wonderful enough to come and capture the 4 of us in our last hours at home…her perspective and some amazing shots of our little family were featured on her blog this week. Her words are truly touching, please visit

Screen Shot 2013-09-26 at 10.34.42 PMYou can also follow along Riley’s journey on Facebook,

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