Tuesday, September 4, 2012

Luke's Next Adventure


 
 
We are getting ready to embark on our next adventure with Mr. Luke.  My aunt and I are taking Luke to Cancun on October 7th for another round of Stem Cell therapy. My aunt is going with me, because she has a place about an hour from Cancun, and Luke likes her.  She flies into the airport many times a year and has for many years.
 
This round of stem cells will be different.  They will be extracting stem cells from Luke's bone marrow (in his hip,) and re-injecting it into his spine to bypass the blood/brain barrier.  I have prayed about this for months and probably changed my mind about going about a million times.  I find myself looking for reasons not to go.  If I am true with myself, though the one thing this journey has taught me more than anything else, is to listen to that voice in your head, because it is almost always right.  Cancun has been floating in the background for possible treatment for many years now.  I have researched the facility and feel confident on where we were going.  However, a few weeks ago, I found they are offering the same treatment in Tijuana.  It is much closer, a little cheaper, no threat of a hurricane while we were there.  I was finding many reasons why it would be better, less time away, etc, etc.  However, my head was screaming, CANCUN!  As if that wasn't enough, after emailing a few parents who had taken their own children to Cancun for treatment earlier this year, I woke up to this email:

It was a great experience for my son.  It was far less invasive & scary than I had feared (him being masked with anesthesia was the most stressful part) and we have seen very promising results.  It has lessened the inflammation substantially & in turn lessened the symptoms/behavior affiliated with it. Though my son is chronologically 8 yrs old - we basically arrived in cancun with behaviorally speaking a 3 yr old - with  a 2 yr old's verbal skills.  Four months later my son is behaviorally around six and his expressive language is near that of a 3 yr old - he still has difficulty with apraxia but it has lessened significantly.  Stem cell therapy has changed our family's life - Andrew is no longer an observer in his world - he is using some Spanish words (we moved to south America immediately after the procedure) he can enjoy new experiences without anxiety, he follows instructions, can answer questions and make decisions on his own - is meeting many milestones he simply never met at the appropriate age - using utensils to eat,  dressing himself without difficulty or stress, blowing raspberries, saying stinky & laughing at his own jokes, playing wii, cutting his own hair (not my favorite but a right of passage nonetheless ) he even started typing  this week when he realized he could look up his favorite animals online. We have not utilized any other "medical interventions" since doing stem cell therapy in order to determine its efficacy.   While I can only comment on our experience - I can say without hesitation that it was of incredible benefit to my son and in turn to our entire family. 

The Devil fights the hardest when you are close to a blessing or a breakthrough in your life! Don’t Let him win! Keep Going!! Don’t Give up!
The Devil fights the hardest when you are close to a blessing or a breakthrough in your life! Don’t Let him win! Keep Going!! Don’t Give up!

So, we are going to Cancun.  Yes, I am going to let them use a huge needle on my son to extract his precious stem cells, and yes, they will be using another needle to re-inject them into his body, all with the hope of getting more healing.  Why would any mother in her right mind submit her child to this?  Because I know Luke was meant to live for so much more.  I know that despite the doctors telling us there is a two year window for healing post brain injury, our God is bigger than any number!  After all, we have seen the most healing in the 2-5 years after Luke was hurt.  I have always felt like the only path to more healing and restoration in Luke is going to be stem cells.  I mean it only makes sense!  I just feel like maybe the whole reason we have the stem cells is when we were made we were equipped to heal ourselves.  Some forms of cancer are healed with a bone marrow transplant.  Here is a  study of bone marrow cells being used to treat TBI:
 

Stem Cells May Provide Treatment For Brain Injuries

11 Mar 2011 

Stem cells derived from a patient's own bone marrow were safely used in pediatric patients with traumatic brain injury (TBI), according to results of a Phase I clinical trial at The University of Texas Health Science Center at Houston (UTHealth). The results were published in this month's issue of Neurosurgery, the journal of the Congress of Neurological Surgeons.

"Our data demonstrate that the acute harvest of bone marrow and infusion of bone marrow mononuclear cells to acutely treat severe TBI in children is safe," said Charles S. Cox, Jr., M.D., the study's lead author and professor of pediatric neurosurgery at the UTHealth Medical School. The clinical trial, which included 10 children aged 5 to 14 with severe TBI, was done in partnership with Children's Memorial Hermann Hospital, where Cox is director of the pediatric trauma program.

All the children were treated within 48 hours of their injury with their own stem cells, which were collected from their bone marrow, processed and returned to them intravenously. UTHealth's Department of Neurology is also currently testing the same bone marrow stem cell procedure in adults with acute stroke. In a separate trial, Cox is testing the safety of using a patient's own cord blood stem cells for traumatic brain injury in children.

As a Phase I trial designed to look at feasibility and safety, the study did not assess efficacy. However, after six months of follow-up, all of the children had significant improvement and seven of the 10 children had a "good outcome," meaning no or only mild disability.

Children who survive severe TBI are often left with serious complications and disability. Currently, there are no effective treatments to protect or promote repair of the brain in these brain-injured children.


Side note: I have contacted, more like stalked this doctor until he would respond to my email.  He said they are looking at doing this on kids like Luke who are post injury, however most likely they would start with us to five years post injury.  He also said it is going to take years for them to get FDA approval for the trial. 

The sad thing is, we have a LONG way to go in the US before this is thought of.  The FDA in the US has determined that once a person's stem cells are extracted from their body, they are now a drug and the government owns them.  Don't even get me started on this!  So, it is what it is, and to Cancun we will go.  We would greatly covet your prayers in the month ahead for safe travels, successful procedure, and AMAZING results.  We are going into this not asking for a miracle, but expecting one.  As I was reminded in church today, I know this guy, who was born of a virgin, healed a lepper, walked on water, calmed a stormy sea, raised a man from and dead, rose from the dead himself, among many other amazing, no impossible to us, things.  I also know the plans He has for my son and they are good (Jer 29:11.)  So I am claiming Matthew 17:20-"You don't have enough faith," Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible."  There you have it, these mountains are getting ready to move!

3 comments:

Anonymous said...

I got goose bumps while reading this. It will work!
CB

Anonymous said...

I'm thrilled at your post of information about stem cell therapy and bone marrow transplants! Because of Luke and other inspiring stories I've read, I have registered at Be the Match. I constantly wonder what more I can do to make a difference. I was told I have a rare blood type and my blood is used mostly for babies in emergencies. I donate blood at all possible opportunity. I can't wait to be called someday to be a bone marrow donor to give somebody in need hope! I am filled with your motivation and I will pray your insight will bring Luke to more recovery and healing. God bless! Luke is my hero and so are you!
Love~
Marilyn

NP said...

Oh Stacey, I am so choked up right now. In my heart I know you have made the right decision for Luke. The e-mail sent to you from the other family was incredible and a sign of more hope. I will pray for your safety and another miracle for Luke ~ he has had many and deserves many more (as does your family). I hope school is going well for the kids!
Love & hugs,
Nancy