February 16, 2017

Hello everyone! Sorry, this is probably going to be a long update. I finally have a moment to update you all on this last week. We have a much needed rest day today – no one is bothering us, and Riley and Jared are taking a little nap. Riley is even allowed to be unhooked from her IV fluids and meds today, so she has been able to play without being stopped and told not to grab her lines! Sweet girl, you could tell she had been getting so frustrated, not being able to play like a one year old should be able to!

I feel like I keep saying this in my updates.. but I can’t believe we are HERE! at UCLA! TOMORROW is her LIFE DAY! TOMORROW!! The day we have been waiting for for a YEAR is here! We are hours away from the moments when she will receive her corrected stem cells! AH!!! I keep having these “pinch me” moments. It is such a strange feeling when I think of how she has already had two days of chemotherapy. It’s all still so surreal. My little girl has had numerous drugs flowing through her veins all in preparation for tomorrow.

Our week has been crazy, for lack of a better word. We arrived on Sunday at 10:00 am and from the moment we got to the room until 1:00 am Monday, it was seriously one of the hardest days we have had. Riley was poked 4 different times in an attempt to start an IV and each time was a failed attempt. She was poked an additional two times just to try to get the little bit of blood needed in order for her to go the OR in the morning. Now, it’s not like it’s an easy “okay, hold still, just a little poke”.. it’s 4 adults holding down a crying, stubborn, and STRONG one year old while another person tries to locate the vein with a needle. As a parent, you have every right to stop what’s going on, you want to scream STOP but you are in this horrible position because you know that one way or another, this has to get done. If we are going to take the next steps to get to transplant day, then this has to be done. But this girl is resilient – much more so than her mama and dada! That’s for sure.

Riley didn’t get to fall asleep until 1:ooam Monday morning and I swear she did not move a muscle until she was woken up to get ready for the OR. We head down to the OR and this time I wasn’t able to go in with her. Afraid and worried that Riley would be screaming as I hand her off to the nurse, she just goes straight to her – more interested in all the new sights around her! That was a relief. The procedure was quick and she was able to come straight back to her room instead of to recovery, another relief. Recovery is a scary place for a SCID kid, so many people around.

Shortly after she was back in her room, chemo was started and she slept through most of it. Again, this girl is so resilient. Nothing has slowed her down! She is just such a brave girl. She is a little fighter and lets everyone who walks in her room know it! The second day of chemo went about the same. Rather boring, thankfully!

THE BIG DAY! For those who purchased a Team Riley shirt – THANK YOU – don’t forget to send us your pictures! We are SO EXCITED! Of course there are nerves, but what a special day this is going to be!!! We are at complete peace that we are where we are supposed to be. The main concern is an allergic reaction to 1. the preservative used to protect the stem cells as they were frozen and 2. possible dead stem cells that didn’t make the thawing process. She will be pre-treated with Tylenol and Benadryl to avoid allergic reaction, but if anything were to come up, the doctors and nurses will be right there.

The cells are tentatively scheduled to be released from the lab at 10:00 am. They will arrive to her room still frozen and will be thawed at her bedside. The infusion should take place right around 11:00 am. We will try to update as soon as possible! We just can’t believe it is finally here! We are so thankful for this team of medical professionals that have dedicated their lives to this research – to give our baby girl a second chance at life.. it’s just AMAZING!

  • Please pray that there will be ZERO reaction and everything will go as smooth as it possibly could go.
  • Please pray for protection from any and all infection as there will be a lot of activity tomorrow and people in and out of Riley’s room setting up and monitoring the infusion of the cells.
  • Please pray for successful treatment resulting in a fully functioning immune system.


for you LOVE, PRAYERS, and SUPPORT!!!

Here are a few pictures from the last few days

1 Comment

  • Gail Figueroa

    Where can I get a team Riley tea-shirt

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