Stem Cells for Cerebral Palsy

Monday, July 14, 2014

One week ago today Alli began her stem cell journey.  Beginning at 9 am we met with the entire team throughout the day.  Alli had an extremely busy day of baseline testing. 7 straights hours of testing.....this kid is the epitome of strength and endurance. She underwent an extensive neurological exam, physical exam, and psychological and functional motor testing. We were pre-admitted for the following day and she had her initial labs drawn. 

Tuesday was a long day with little sleep.  We turned in late Monday night and had to wake around 3:30 Tuesday morning.  Alli was admitted at 5:30 and the show began.  We did the routine waiting game before she was finally taken back to pre-op.  They kept asking if we felt she needed Versed, but the kid was straight up as cool as could be.  And just to give you a little background, she has some severe white coat syndrome.  But not this particular morning.  God rained down supernatural peace on all three of us.  I remember looking at John at one point saying, "ok, I'm a little freaked out because I'm not nervous."  I always get a hint of nerves, especially when dealing with sedation, ventilators, and those lungs of hers.  

Listening intently to the anesthesiologist.

We were able to hold her hand and sing her favorite song (Twinkle Twinkle Little Star) as they put her to sleep. Medical stuff aside, you know your child is in good hands when the entire team begins singing with you. I'll be straight with you here, John and I both cried.  As peaceful as we both felt, it never gets easier to watch your child continue to endure so much.  And I don't think it ever will.  

We went back to the waiting room and waited.  I texted back and forth with two of my dearest friends (the two people I call on when I just need to be real or need truth, encouragement, and someone to pray with me), listened to "Come to Me," and prayed.  Hours later, they came and grabbed John and I to go back to post-op.  I was fully expecting our sweet baby girl in hysterics.  Her last two sedated procedures she endured several hours of the post-sedation hysteria, non-stop screaming, crying, retching....all of it.  But again, peace rained down and she was sleeping peacefully.  

This was near Alli in post-op.
 It took her several hours to wake up, but she was as peaceful as we have ever seen her.  She had a few heart rate drops during that time, but maintained her o2 saturations at 98-100%.  Backstory again, she DOESN'T sat 98-100% on a good day.  Her baseline is 94-95%.  Always.  

We all rested and waited until 2:30-3:00 when the infusion was to take place.  For the particular stem cells they were using, it takes approximately 6 hours to process.  At 2:30 on the dot, the team walked in.  To be honest, there were nerves at this point.  The questions swirling in my head, "what is in the box?  Placebo or stem cells? Can I get a read on them?  Someone has to slip something that would indicate what she's receiving." 

The infusion was a little anticlimactic, but still an extremely  powerful moment wrapped into one.  John and I both were praying as they infused her and seconds later, it was done.  72 million of her stem cells in 15 ml OR the placebo.   Should she receive the placebo, she will be able to cross over and receive her stem cells next year. So it's a win/win either way. We obviously would rather have them now than later, but are resting in the fact that we know she's getting them!  She was watched closely following the infusion for the first 5-6 hours.  Then it was every hour for the rest of the 24 hours following infusion.  

So many have asked, "When will you know?  Have you noticed anything yet?"  

The short medical version: it could take months and then, even then, there are so many variables.  An MRI could be the clinical indicator, but just because something changes the brain doesn't necessarily mean you can see changes on the outside.  And vice versa.  I'll save this one for the experts to figure out. 

I've heard from several families, whose child received stem cells abroad, and they have seen subtle changes within days.  

I will say we have seen an increase in eye contact and interaction (a good friend commented that she engaged with Alli for the first time the other day and I quote, "She has never looked at me!") Just on Saturday at the pool, Alli was climbing up the kiddie water slide and sliding down...WITHOUT assistance.  Something she has yet to do when we visit the pool.

While we have seen a few changes we also admit, we have  been seeing changes anyway.  Only time will tell if it is natural development or stem cells.  Or even both.  

Regardless, we're so excited for her and for what this treatment means for people with CP.  We have some things under wraps that we can't divulge, but if she did receive the stem cells, we are praying SO so so hard that there will be evidence of improvement that can be seen both on her next MRI AND on the outside.  It's a game changer, y'all!  

Thank you for your love and support during this time and as we continue to walk out the next two years of this study and beyond.  God is faithful and He has surrounded us with the truest of warriors.'all.   

'The Lord alone is our radiant hope and we trust in Him with all our hearts. His wrap-around presence will strengthen us. As we trust, we rejoice with an uncontained joy, flowing from Yahweh!'~from The Psalms, Poetry on Fire

1 comment

  1. PRAISE GOD! Great to hear such an AWESOME report. THANK YOU JESUS!! Love and miss you guys!!


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