Friday, October 19, 2012

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:)

Wednesday, October 10, 2012

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!!

Thursday, October 4, 2012

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