TEAM RILEY UPDATE: This Is Really Happening…

 TEAM RILEY UPDATE: This Is Really Happening…

You guys.. this is really happening.

As I write this, we are on the way to CHLA to meet with Riley’s current doctor and will have a conference call with the Gene Therapy team at UCLA to go over the trial and sign the Informed Consent, agreeing to enroll Riley into the clinical trial for ADA-SCID Gene Therapy. 

 We received  the Informed Consent to review last week – 24 pages of possible side effects, risks, and benefits. Reading it can nearly paralyze you with fear and I’ve definitely lost sleep over it. Nothing has ever made me feel so sick to my stomach yet so hopeful all at the same time. I don’t even know how to describe the mixed emotions.

We are now less than a month away from starting the process of Gene Therapy and healing for our precious girl.

I am scared to hand my baby off to the OR.
I am scared to see her in pain.
I am scared to see my sweet, happy girl sick and not wanting to eat because of the chemotherapy.
I’m scared I’m not going to be able to comfort her during the hard days.
I don’t want to see IV lines sticking out of her arms.
I don’t want her to get chemo at all.
The fear is real and it is very hard not to dwell on possible risks of this treatment. The “what ifs” are the worst and I try to constantly remind myself that they are required to disclose any possible risk or side effect. Even if it has .00000000001% or less chance of happening, it doesn’t make it any easier to read. 

I was telling my parents about the consent forms and how hard they are to read. My dad asks one question – “will anything in that change your decision?” The answer is simply, no. It will not change the fact that this is the best, and really only, option for Riley to have a chance at a healthy, normal life. A life outside of isolation and constant medications. Gene Therapy, in Riley’s case, is the safest option. She does not have any perfectly matched bone marrow donor, and even if she did – Gene Therapy is still the better and safer option. So, no, as scary as this all is – nothing in the informed consent will change my mind. I firmly believe that we are on the right path – the path that will give Riley a second chance at life. The path that we can undoubtedly see The Lord’s hand in bringing it all together every single step of the way. He has placed every single puzzle piece together perfectly to bring us to this point. Oh, if you only knew all of the details, you wouldn’t believe it’s merely a coincidence – you would see that it is 100% the plan that God designed for us. Maybe one day I’ll share all those details and timelines that brought us to this point. God is so good! We praise Him for this journey we are on, for His unconditional love, meeting our every need, and protecting Riley’s health and life over the past nearly 11 months. 

This is a big day for us. Please pray for us this morning. 

  • For questions to be answered
  • For the conversations to go well
  • For certain decisions that need to be made regarding Riley’s care in the hospital and post gene therapy
  • For continued peace
  • For continued health for Riley and Jared and myself 
  • Protection from any infections 
  • SAFE & EFFECTIVE treatment with little to no side effects ??????

THANK YOU!!!!!

Here are some Christmas pics of our brave little girl – my little warrior and my hero ❤️????❤️

5 Comments

  • Patty Scarr

    I pray every day for your precious little girl! I trust that God will keep his hand on her, as he has, throught out this whole process. I do pray for peace also, for everyone involved, knowing that God is in control and will see her throught this. I’m so thankful that there is a treatment for this and that she does have the chance for a normal life. I love your mom, I love you and I love Riley. God bless!

  • Helen mylott

    She absolutely beautiful. You’ve got this xxxxx

  • Roxanne Moore

    Prayers for you and yours…I can absolutely believe all the little steps, the puzzle pieces, that had to have happened, in perfect sequence, all along the way to get you to this point… Faith trumps fear… Expect a miracle… God will not let you down… Love and blessings to you and yours… 🙂

  • Rachel Moore

    Yay, it’s finally happening!!!! So, so happy for you guys!!!

  • Jill Scott

    Thank you for the update I know your mom and dad and may I say what beautiful parents you have they are the best! My prayers are with your family and may god heal your sweet daughter. prayers are coming your way. ??

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