Stem Cell Recap

 
We have returned from our trip to Cancun for the Stem Cells.  I have to say, this trip far exceeded all the expectations I had.  The staff at World Stem Cells were all great!!!  Here is a breakdown of our trip by day for those of you that have asked.

We arrived in Cancun the Sunday before, as we were scheduled to be picked up at 9am Monday to visit the doctors.

Day One:  Dr. Kadish (the American doctor on staff) gave Luke a thorough check up during which he noticed Luke has a zinc deficiency.  Apparently bad acne, white marks on finger nails, and bad dandruff are all signs.  I have say, since we have put Luke on Zinc, I have noticed a HUGE improvement in his acne.  They also took a blood sample to test it, and gave Luke a shot of Filgastrim to stimulate his cells.  I was very impressed by how clean and nice the clinic was.  It was cleaner than some offices we have visited here.  The clinic is a brand new state of the art building as well.

You can tell Luke does not mind the attention at all.  I was super impressed by how everyone acknowledged Luke and spoke to him about what they were doing.  Besides Luke's PT, and pediatrician, it is rare than any doctors acknowledge him.  The other photos are of the building where the clinic is and one of the clean room where the stem cells are tested and processed. 

 

 

Day Two: Went over blood test and gave a second cell boosting injection.  I have to say we noticed so many things with Luke after they gave him the second injection of the Filgastrim.  He was super hyper!  In fact, we had a huge battle at the beach because he decided he was going in the ocean deeper than where I was taking him.  Thank you Rafael at Azul Beach for helping two crazy ladies battling a 12 year old out:)  My aunt took him in the swimming pool.  At the end he said, "I can stand," and "I will go by myself."  Keep in mind, he rarely will say more than "yes" or "no."  His words were also coming together closer than ever before and faster response time than before.  You can see in the pic below how he wanted to climb over the pool gate to swim by himself.  At dinner, my aunt and I ordered, and I ordered for Luke which I always do.  At the end he told the waiter, "my turn," and said he wanted, "edamame."  He must have heard me ask my aunt if she thought they had it there.

 

 

Day 3: Today was the big stem cell harvest and re injection.  They arrived to pick us up at 8:30.  They harvested the stem cells from his tibia bone, just below the knee, which meant shaving his legs just a bit.  He thought that was funny, and also discovered the up/down buttons on his bed while we were waiting.  They performed the procedure in the same clinic, using a surgery room in a recently opened IVF clinic.  Again, everyone was so nice.  The nurses there loved Luke.  During the procedure they called me numerous times and came in to let me know what they were doing and how it was all going.  The way it works, is first they take the cells, then they take them to the lab to process them, and lastly they re inject using a lumbar puncture.  All went very well!  The hardest thing was keeping Luke on his back for the rest of the day.  He did pretty good though.

 

Day Four: We first stopped by the clinic for them to check Luke's sites, and all looked well.  We then went to visit with Mrs. Aurora the Physical Therapist.  She was wonderful and gave me lots of ideas of simple things to do with Luke at home to stimulate the cells. 

 

 

Day Five:  Our last visit to the clinic where they gave Luke another injection of the stem cells via IV.  As soon as we got back to the hotel, he developed a fever.  I have say the staff was super attentive.  They sent a doctor our to our hotel to check him out and give him a precautionary shot of antibiotics. When we arrived they gave us a cell phone with all numbers for the doctors pre-programmed to use if we needed it.  After a few hours he was fine.  All afternoon he was super tired, and would alternate between irate and just plain sad.  I think his brain was in overload.  He did tell my aunt a story about hunting that I am still kicking myself for not recording it! 

 

I honestly can not say enough good things about the clinic.  They are truly a top notch operation and have thought of everything!  They genuinely care about the  patients they are seeing, it is not at all about the money.   They have made a difference in a lot of people's lives with everything from neuro ailments, orthopedic aliments, and a lot of kids with autism.  I asked them how often patients come back, and they said most don't have to because of the results they see, obviously most have not been as severe as Luke.  Plus, with views like this you can't go wrong:)

 



 

Now for the million dollar question, have we seen results??  Well it has  onlybeen a week, and they say usually wait about 3 months to start seeing things.  Luke saw his PT yesterday.  He said Luke is definitely showing better control and coordination while he was walking him up the stairs.  He also seems to be aware of more.  He was telling the PT that his heart was beating fast when they were walking up the stairs.  He also told him he wanted to go by "myself."  I have noticed that he does seem to be responding/processing things faster.  He is also noticing things around the house he hasn't really paid attention to before.  God is good!  I am so thankful I decided to go that voice inside my head instead of going to Tijuana like I was considering.  This cost the exact same amount (excluding travel,) but we got so much more out of it.  Thanks to my aunt for helping me out with Luke this trip.  She got to see him many emotions/outbursts and helped so much!  Thanks SO MUCH to Dr. Kadish, Rudy, Dr. Jose, Dr. Sylvia, the wonderful anesthesiologist(sorry forgot your name,)  EVERYONE for loving my son and wanting to see this work for him as much as us. You have blessed us so much!  Luke even gives it a double thumbs up:)

 



Successful day!

Quick update to let everyone know today went perfect.  They did the bone marrow stem cell harvest from both of Luke's tibias, took the cells to the lab for processing, then did the lumbar puncture with Mannitol to inject the stem cells back into Luke.  Everyone was pleased with how many cells they got, and how well Luke did.  He is a trooper and has been amazing us this trip!  More to come on that when I am not typing letter by letter on an iPad.

One of my biggest concerns was where they would be doing the procedure.  I have to say, it was cleaner than most hospitals/clinics we have been to back home.  All of the doctors/nurses have been amazing and actually acknowledge Luke, which we again, hardly ever see at home.  More details to come when we get back home.  Thanks so much for your continued prayers.  I have to say, one of the staff told me today he read the medical records from Luke's drs back home.  He said from reading the reports he did not expect Luke to be able to do some of the things he does.  We all have high hopes for him now.  God is good!!

In just three days we will be boarding a plane to go to Mexico for Luke's big stem cell treatment.  We are asking for prayers for so many things from this trip.  First and foremost that all goes well and we make it home safely.  Secondly, that we see improvements from the procedure.  Luke is going into this as the first pediatric TBI patient they have treated.  This can make a mother very anxious...setting off into these uncharted waters.  I have to say, the staff has been VERY accommodating and helpful with my question overload.  I am sure they all can not wait to meet the mom with a million questions.  They will pick us up at the airport and take us to our hotel.  Then, they pick us up everyday fora visit with the staff.  On Monday they will most likely do the stem cell aspiration where they take the cells from Luke.  Then on Wednesday is when they will most likely re inject them. So those are the big prayer days.  I will try to update on this blog, but for sure will be updating on my Facebook page, so send me a request if you want to see the updates there.  I am just not sure what the wifi will be like to allow me update here.

Here is another email I received from another mom whose child with autism has the procedure done at the clinic we are going to:
We have been in for two stem cell treatments, one when our son, Sam, was 8 and one last Christmas when he was 10.

Both times we saw positive changes immediately, within the first few days.  That may not be usual but both times was the same for us.  Our son's autism presents sort of all over the map. In some ways he is right on target and in others he is extremely far behind developmentally. He also presents with difficult behaviors.  Sam's behaviors did improve. He has much more awareness of his surroundings. Also his coordination has improved as well.  

There seems to also be an overall maturity about him as well.  He's done some novel things like get himself in and out of the shower and get dressed for bed.  If he's hungry now he just finds himself something to eat until someone makes him something. So I would say his independence has improved as well. These are hard measurable markers and only people really close to him can tell that he has changed in those ways.

He is also making sense of more Who What Where questions - answers he could not give us before. 

Thanks so much for following us on this journey!  We are certainly expecting a miracle and thank you all for your prayers to get us there.  I was working out today and one of my favorite songs came on, a reminder to me for sure to have no fear and follow where you are led.
Be strong in the Lord and,
Never give up hope,
 (He's) going to do great things,
I already know,
God's got His hand on (this) so,
Don't live life in fear. -from "The Words I Would Say" by Sidewalk Prophet

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!

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!

We had a super busy summer that seem to fly by and school started again yesterday!  The reports say his first day went great, hoping that continues for the rest of the year!

Here are some pictures from our summer vacation.  We spent a week at Hurricane Lake near Pinetop/Greer. 

 Luke checking out a bear my dad killed right near our camp.

 This kid has no fear!  Luke letting a snake crawl all over him.

 One of my favorite pictures, Luke very excited he is catching a fish.

The cousins that were there.

Luke did a three week camp at a therapy place near us twice a week for the last part of summer break.  He really enjoyed it, and I wished I had found out about it sooner, then perhaps he could have done it all summer.  Maybe next year!  Anyway, I got this yesterday from one of his teachers at that camp.  It made my day:)  I love it when people see the potential that he has.

Dear Luke, I only new you for a few weeks over the summer at l.i.f.e but you stole my heart. I work with wonderful kiddo's like you all day and have done for 10 years, you are so special and I keep thinking about you! I saw that you have so much you want to get out and express I also saw a kid with a larger than life personality who Is strong and courageous, also with a sense of humor when you laughed as you tricked me playing cards. It was a pleasure to have you at life. Love you Luke your truly amazing.

Luke's 12th Birthday Party

Happy 12th Birthday Luke!!

Twelve years ago we were blessed with a baby boy!! Little did I know then that this kid would teach me so much more than I could ever teach him. Happy Birthday to the strongest, bravest, and dare I say, most stubborn boy I know. We love you buddy!!

Miracles Can Happen

We had a very Happy Easter and hope you all did too!  We had our own Easter Miracle when Luke spoke his longest sentence in five years!!!  He has really been saying a lot more words the last month or so, and more importantly making his wants/needs known.  Last week, I brought him out some shoes to wear, and he said, "I pick."  Then after he picked his Heely's, he said, "I can Heely."  So last night, I asked Lacey if she was ready to go to bed.  She said yes, and as I was leaving the room with her, Luke said, "Dad, can I go to bed?"  Now, granted when he speaks, it is sound by sound, so it is very hard to understand, and sometimes it takes us awhile for us to get what he is trying to say, but we will take it.  It is progress, when we were pretty much told if he isn't talking by now, it isn't gonna happen!  Other things he has said lately are "push me," "I can go," "I eat," "I want juice," among other things.  It makes me so happy that he is able to make his wants/needs known to us!!  God is good, and we are so happy for this season of hope, great things are ahead!!!

                                         

Coloring eggs with his cousins

 Finding eggs Easter morning

 Scooting to get his basket

 Our family Easter morning

 Luke and Dad

 Luke and my grandpa

We had a very Happy Easter and hope you all did too!  We had our own Easter Miracle when Luke spoke his longest sentence in five years!!!  He has really been saying a lot more words the last month or so, and more importantly making his wants/needs known.  Last week, I brought him out some shoes to wear, and he said, "I pick."  Then after he picked his Heely's, he said, "I can Heely."  So last night, I asked Lacey if she was ready to go to bed.  She said yes, and as I was leaving the room with her, Luke said, "Dad, can I go to bed?"  Now, granted when he speaks, it is sound by sound, so it is very hard to understand, and sometimes it takes us awhile for us to understand, but we will take it.  It is progress, when we were pretty much told if he isn't talking by now, it isn't gonna happen!  Other things he has said lately are "push me," "I can go," "I eat," "I want juice," among other things.  God is good, and we are so happy for this season of hope, great things are ahead!!!

Five Years...

Five Years. That is One Thousand Eight Hundred and Twenty Six days since we received the phone call that brought us to our knees. Five Years since Luke was given a 3% chance of even making it through the night. Five years that he has spent fighting every single day to regain what he had. Five years that we have walked this journey called Traumatic Brain Injury. I can remember thinking once Luke was "out of the woods," and we knew he was going to survive, well give him a few weeks and he will be back in school. Instead, he spent 8 weeks in the hospital, 4 months in a coma, and every day since March 6, 2007 showing us what a fighter he really is. While I wish more than anything, he had recovered and was living life as a "normal child", it wasn't up to me. The fact is nothing on this Earth is up to me and my plans. God has a greater plan for all of us than we could imagine, and everything that happens is because of Him. We have spent the last five years pursuing anything that shows promise for Luke to get him walking and talking again. Some have worked for him, and some not so much. More than anything though, I have realized no matter how much we put our hopes in the latest promising treatment or cure, there is only one place we can put our hope and know that in the end all things will work together for His good.


Five years later, and we are at peace. This is our new normal. This is a cross we have been given to carry on this Earth. We are no different from anyone else. Everyone in their lives faces trials at some point, and it is through these trials that we grow. We learn what we are really capable of doing. I will never ever give up praying and believing that Luke will walk and talk one day. More than anything else though, I just pray he is happy with the life he has been given to live. I pray he feels loved and knows that everything we do for him is giving him a chance at just a little more independence. I pray that through their brother, his sisters will have more tolerance for those with special needs. I pray that we have the patience to get Luke through the hard days. I pray that those that meet him, will be able to get past what their eyes see to the boy Luke really is. I pray he will continue to have the perseverance, stamina, and drive to go places no one ever imagined he would. More than anything, I pray that he has peace to know that, even if it never happens here on Earth, someday he will be healed and walking and talking again.



Luke still continues to amaze us with the progress he makes. Just last week, in the middle of the night, I heard him calling out, "Ma, ma." This is something he has never done before, he usually will just yell if he needs us. I walked into his room and asked if he needed something. His reply, "Ya." When asked what he needed he said, "W-a-t-e-r." Now it was sound by sound to say the word, but we will take it, progress is good:) Thank you all so much for following us on this journey for the past 5 years. Without the amazing support we have from our family and friends, there is no way we could do it all. We are very blessed!