TEAM RILEY UPDATE: Patience

TEAM RILEY UPDATE: Patience

Hi Everyone!

This update has taken much longer for me to post than I was wanting it to. I have been waiting and waiting to hear from her doctors about the results of her 3 month post transplant bloodwork so I could include them in this update. We still haven’t received the majority of the results, but did receive some that I will share later on.

Riley’s clinic visit last week started off with a rough blood draw. The worst we’ve had in a LONG time. It took three pokes, but little miss was so tired and crying so hard through each attempt, she could barely catch her breath. It took quite a lot to calm her down after and it just hurts my heart to see her like that. They needed so much blood too, so it wasn’t three attempts and a quick draw once they got the vein, it was three pokes with the needle in her arm for an extended period of time, trying to hold her so tight to keep her still so they didn’t lose the vein each time. Her poor little bruised up arms! They took at least 12 vials of blood, around 30 mL (just over 2 tablespoons – which doesn’t sound like much but it is A LOT for a little 23 lb baby).

However, after such a rough start to the day, the results that we did get during clinic looked really good! I was relieved that we got good results after such a bad draw and not a double disappointment! Her neutrophils, which had dropped to 600 leaving her very vulnerable to bacterial and fungal infections, have come back up to 1,200! They doubled! Wohoo! Her White Blood Count and Lymphocytes doubled too. This is a great sign that her new and improved stem cells are now working on their own to produce the white blood cells that she couldn’t on her own prior to transplant! This is all the more reason I am so anxious to hear the results of her 3 month labs from the research team!

I finally caved and emailed the research team, looking for lab results. I got a response with a little bit of information but not full results. However, this news is really exciting! With Riley’s type of SCID, her body cannot produce a specific enzyme. She was able to get enzyme replacement therapy while waiting for transplant, but that enzyme was derived from a cow and in no way allowed her to produce the enzyme on her own. It was only a temporary “fix”. If they were to test her red blood cells for this enzyme, it would not be found, even with the enzyme injections she was receiving. BUT NOW!!! Now her red blood cells show ABOVE NORMAL LEVELS of ADA enzyme activity! This is amazing news because it means that her new, genetically modified, stem cells have no doubt made themselves at home in her bone marrow! Woohoo! Now, don’t get too excited because this does not at all mean that she has a functioning immune system.. YET. She is still very vulnerable and we still have a long wait and a lot of patience to practice. But, this news means that her body should not have any issue with immune reconstitution and we, hopefully, should be seeing good improvements in her T-cell counts by Labor Day!

As always, we are so thankful for your love and support. Riley still has a long road ahead of her but she is getting closer and closer to freedom and a normal childhood as the days go by. We of course ask for your continued prayers for Riley and our family to remain healthy and free from illness.

We are so excited for Riley’s future and cannot wait to see all of the wonderful things the Lord has in store for her life.

Thank you, again! We don’t know how we would be making it through all of this without your support and most importantly, your prayers.


 

God Bless You All!

xoxo,

Mel

 

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