TEAM RILEY UPDATE: January is here! 

TEAM RILEY UPDATE: January is here! 

January 4, 2017

? Happy New Year to YOU! Where has the time gone? December just flew by! We had such a busy month. From the moment we got the call with Riley’s gene therapy dates, it has been non-stop hospital visits, screening tests, blood work, and conference calls.

?Riley starts the process for gene therapy in 5 DAYS! … 5 DAYS! Next Monday, January 9, she will be admitted to UCLA for pre-op and the next morning will undergo the Bone Marrow Harvest. We will stay Tuesday night with plans to be discharged sometime on Wednesday.

She will be under general anaesthesia and two needles will be used simultaneously to remove 1/2-1 cup of her bone marrow, depending on her height/weight. The entire procedure should take about an hour. From that point, her bone marrow will be taken to a sterile lab and the stem cells will be isolated, corrected, and frozen. While frozen, they will be continually tested and must meet a list of requirements before they are approved for release. So we wait, wonder, hope, and pray that her stem cells take well to the treatment and pass all tests!

This where you all come in – we need your prayers! Please pray with us that

  1. They get enough bone marrow stem cells during the harvest to begin treatment. If enough stem cells are not obtained then a second bone marrow harvest would need to be attempted, but we’d have to wait at least 1 month for that.
  2. That Riley handles the anaesthesia well and has little to no side effects or pain from the procedure.
  3. For the doctors, nurses, scientists in the lab – that all correct safety protocols are followed, that they are focused and able to work swiftly and efficiently during the harvest and in the lab correcting her stem cells.
  4. Protection from any infections. It’s cold & flu season and a hospital is the last place anyone wants to be with so many dangerous germs lurking that cannot be seen. Please pray for continued health for Riley and praise the Lord that she has remained well for the last 11+ months.
  5. For Riley’s stem cells to multiply and grow once corrected as they need them to.
  6. That her frozen, corrected cells pass all quality control testing and are released on time, in perfect condition for transplant day.
  7. Please pray for Jared and I. We have confidence and peace that this is the correct path of treatment to save Riley’s life. However, that does not stop the nerves that come and go. Next week it all becomes reality, we WILL be at the hospital, handing our baby off to the OR, waiting to hear that everything went well and we can get back to our baby girl while she wakes up from her sleep. I know there will be tears, there will be many emotions – high and low. Pray for us, for our hearts to feel calm, an unexplained peace all next week knowing that God is in control.
  8. Financial provisions. Jared will be out of work without pay for a few weeks over the next couple of months. We have been so incredibly blessed by so many of you in this area and we are more thankful for this than we could ever fully express.

 

This is all scary. There is no way around that but we daily make a conscious decision to trust in the Lord. I was scrolling Facebook yesterday and saw this verse posted by one of my favorite high school bible teachers, no explanation why he posted it. Just the verse, a verse I needed to read:

“This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”-Joshua 1:9

Amen to that.

_________________________________________________

One way you can help us and show your support is purchasing a TEAM RILEY SHIRT!


CLICK THE FOLLOWING LINK TO CHECK OUT OUR CAMPAIGN:
http://booster.com/teamrileyolivia

THANK YOU to EVERYONE that has already purchased and/or donated! We are so excited for these shirts and to see you all rocking them!

_________________________________________________

Riley turns ONE this month! WWHHHAAATTT!!! Oh my goodness. January 22nd ? I am so thankful that we will get to be home with her to celebrate. Although it will be just the three of us in isolation, it will be such a sweet day! This girl is so full of life, she gives us a run for our money – that’s for sure! Her favorite thing to do now is to CLIMB on everything. If you follow my personal Instagram or Facebook.. you know who climbing abilities. Oh boy, we are in trouble with this girl. She is definitely ready to break out of her bubble world!

  • She crawls SO fast, we try to pick her up and she jets off.
  • She LOVES to wave hi ??  at anyone and anything. Especially Dada and Mickey Mouse! We often catch her waving at people on the TV too!
  • She is very talkative. I can’t understand much other than mama, dada, and bebe but she sure is a chatter box!
  • She just started blowing kisses! ? well, her version of it!
  • She took three unassisted steps – a walking baby is just days away!
  • She dances to her BeatBo and all the songs from Mickey Mouse Club House (her absolute favorite, she gets so excited when she see’s Mickey and hears the songs!)

Aaahh we just love this girl SO STINKIN’ MUCH! Despite all of the hard days battling SCID – being Riley’s parents has brought incredible joy and love into our lives and we would not trade this journey for anything. Just look at this cutie!!!!

Leave a Comment

Your email address will not be published. Required fields are marked *

back to top