Mailia and Dr. Zannos Grekos day of Blood Draw
October 24th…2011 landed us that Monday morning at the Regenocyte clinic in Bonita Springs, a convenient 2 block distance from our temporary residence. We were greeted by everyone and settled ourselves in, to ready Mailia for her blood draw, which would be drawn from a femoral pic through her right side/groin area ( A preference by us..since her arms do not generously give up blood so easily) so why traumatize her with Rosie the Riveter?
Same as last year, the only difference was that Mailia knew the drill now, and was not so nervous or anxious about this. She relaxed…started her breath work and chatted and laughed with everyone.
The Regenocyte staff were a little disappointed that her little service dog, “Steel Dust” did not accompany her this trip…she had to leave him back home this time but brought a substitute, a beautiful little Blue Merle Australian Shepherd with blue eyes…the spitting image of her little Steel Dust who she acquired through the WebKinz web site. Yes…he is a “stuffed” toy.
No matter, he brought Mailia much needed support and comfort and she borrowed SteelDusts “Service Dog Vest” and identification to play the part.
Here comes the Poke!
Mailia was later readied into a gown, and hooked up to a heart monitor. I followed her oxygen saturation levels which were in the low to mid 80’s on her standard 5 lpm of oxygen. Her two nurses, prepped the site of her femoral pic, after which Dr. Grekos gently guided the needle into place, and filling the standard 250 cc bag from which Mailia’s adult stem cells, would be derived.
Mailia's beautiful blood for her stemmies
The courier arrived to pick up Mailia’s and another patient’s blood which was hand couriered to a special biological laboratory in Israel where her stem cells will be activated and multiplied using naturally occurring growth factors. In this process of activation, Mailia’s new stem cells are customized for the purpose of which she is being treated for…her lung vasculature…i.e. Pulmonary Hypertension. They will regenerate lung vasculature…and help her build new blood vessels throughout her lungs.
Regenocyte's timely and wonderful courier
This process will take aprox 8 days from today so we will spend the next few days, getting Mailia relaxed, happy and healthy for the next leg of her journey which involves mobilizing into Santo Domingo in the Dominican Republic for her actual adult stem cell transplant with the Dominican Regenocyte team.
After Mailia’s blood draw was completed…we got her up and ready to leave the office to head out to get her some lunch and replenish her iron levels. Her uncle Greg Finley joined us as we drove north to have lunch at Ted’s place (Ted Turner) where you can find the best all natural buffalo burgers. Mailia…had a beautiful chicken salad instead.
The following day Tuesday, we were scheduled to bring Mailia back into Regenocyte for an ECHO and further discussion with Dr. Grekos about Mailia’s procedure and where we would go from here. Her right ventricle looked very good and Dr. Grekos was very pleased with her overall heart function.
Our expectations are to see Mailia’s pulmonary pressures come down further and her energy level improve equal to or better than last year. Will this be low enough for surgical repair being afforded her?...that, time will tell and if not, then another course of stem cells, her third…would not be out of the question.
In the interim…we continue to give Mailia a balanced regime of supplementation we have found will complement her stem cell therapy…and she will keep up with her breath work, Pranayama.
Tomorrow…she is delighted and happy to know we will be taking her to see Winter…from Dolphin Tale. If the day is anything like the movie…she will be so very happy and at peace.
Thank you for being a part of Mailia's continued journey towards her miracle. Please keep her in your thoughts and prayers for her successful transplant next week.
All our gratitude and blessings!
Andrea, Max and Mailia
Sunday, November 6, 2011
She did it! We stressed for months, both Max and I whether or not Mailia would be capable of flying to Florida this time instead of taking the long road trip like last year in order to keep her closer to sea level because of her lung pressures being so very high.
We trusted our Mailia...knowing how much stronger and more energetic she became from her first round of adult stem cells (see May/June 2010 blog entries) that yes, quite possibly she would be able to tolerate a 5 hour flight with supplemental oxygen and her new found Power of Breath or Pranayam technique.
So after a lot of prayer, consulting between doctors and physical therapists and much discernment we decided to go forth with plans to fly Mailia...this time and oh, are we so glad she did.
Mailia's wonderful grandparents, John and Janet Goforth came to spend the last couple weeks with us helping us all get ready with many honey do's and last minute details prior to our trip. They also graciously gave us a donation to help offset some of Mailia's stem cell procedure costs, to her non profit The Alliance for the Advancement of Adult Stem Cell Therapy and Research, for which we are so grateful.
The night before we left on October 20, our local Tri Cities Dust Devil’s baseball organization held a World Series opener party which became Mailia’s official send off party. It was an exciting time and event for Mailia, one she will cherish and remember always. Our thanks to the Dust Devils management team…for an incredible year.
We landed in Florida on Friday October 21th, so very tired and exhausted from our late night/early morning flight, straight to claim our baggage and find our rental car with such a great relief. We managed to find our way out of the maze of streets surrounding Miami International and Max promptly got us headed west along Alligator Alley…or I-75 west heading for our destination of Bonita Springs. A quick stop to our favorite little restaurant chain in the South and Mid-West, Cracker Barrel restaurant…for a good breakfast and new Webkinz for Mailia, a polar bear she named Knut, after the famous polar bear from Germany.
Upon our arrival in Bonita Springs, we were instructed to visit the Regenocyte office to pick up a key to the condo where we would be staying. You see…our dear friend Nahla Abbo, who is Cal’s mom…who you have heard us reference in previous posts being so very connected to Mailia as they share a similar journey, so graciously offered us her parents condo so we could stay rent free…helping us out immensely!
We were all greeted at Regenocyte…despite our exhaustion and gaminess with open arms, hugs and smiles. They were so very thrilled to see Mailia again, gave us a bottle of oxygen to tie Mailia over as the batteries in Mailia’s oxygen concentrator were all coming to an end. Max and Kelly Drouin from the Alliance, ran and fetched an oxygen concentrator from the Naples Lincare oxygen service provider, and she was all set up with a permanent source for oxygen.
Bear in mind…for those that might read this who will at some point, consider traveling with a portable oxygen concentrator, Mailia had a unit while traveling to and from the airports, and while in flight only between Seattle and Miami…a direct 5 hour flight, a unit called a Respironics concentrator. It delivers up to 6 lpm but only by pulse…not constant flow which is what she is used to.
Mailia had a week to practice with this unit while using it at home. It worked well…along with her breath work, the only problem we had while in flight was when Mailia dozed off, and went to mouth breathing. Then…I would have to wake her, giving her the elbow and drill to breathe through her nose. Her sats dropped a little while in flight…but then again, so did mine and Max’s.
We made sure that Mailia was well hydrated before and during our flight and that she moved her legs and extremities enough so to avert possible complications with any DVT. She knew what to do instinctively and told her dad and I…not to worry, she was good to go!
Back to the condo where we were staying in Bonita Springs…that evening after resting up and unpacking, we went out to grab a bite for dinner. We decided on Outback steakhouse as Mailia had a hankering for a salad and shrimp. Mailia made a friend last year who she met at our stay at the Trianon Hotel here in Bonita Springs for her first stem cell transplant, a beautiful young woman by the name of Dana Foster who also works at Outback. Imagine our surprise, when Dana saw Mailia…and the two, got to greet and meet for a second time…incredible and heartwarming that these two souls would reconnect with each other. We are grateful to Dana for staying in touch with Mailia…this past year, as her friendship has meant so very much to her.
Arriving here Friday, we had the weekend to just relax and give Mailia some much needed rest before her blood draw on Monday. We made a few trips to the grocery store to stock up on food for our meals so not to each out as much thanks to Nahla’s folks condo’s beautiful kitchen. We also procured a juicer so Mailia could continue her daily cabbage juice routine…an important source of Glutamine to help avert lung bleeds…(really works)!
The baseball World Series was also on…and we watched with great anticipation, the head to head matchup between the St. Louis Cardinals and the Texas Rangers. Mailia of course, rooting for both teams.
That Saturday…we had to go procure a replacement modem for our laptop as the one we had, which was an external thumb drive, accidently broke. After leaving Bestbuy…we found a movie theater nearby recommended by Kelly called the Spotlight…and decided to take Mailia to see the movie she had been wanting to see called “Dolphin Tale”.
The theater was unlike any we have ever seen or experienced. Internal restaurant and bar…instead of snack bar. Huge plush high back leather soft seats and 3-D viewing. We opted for lemonade and popcorn. The movie…was incredible. I cried and cried…throughout. This movies story hits close to home. A broken dolphin, broken humans…a broken business. Sound familiar?...well, it was.
When we returned back to the condo, Max told Mailia how very proud he was of her and her unbelievable will and courage, especially during our flight and trip. The movie…impacted and moved Max and I deeply. Mailia asked…if we could take her to see Winter, the dolphin from the movie that resides at the Clearwater aquarium near Tampa. We said…of course without batting an eye not knowing how life changing this experience would be for her…and us.
All I can say is that it is a movie and story worth seeing. Mailia did…and is so very happy and grateful. Maybe Wednesday, after Mailia’s blood draw, we will make the journey north to see Winter and the animals at the aquarium. For now, rest and relaxation for Mailia. Did I mention how she has befriended a little moorhen duck she has fondly named “Stanley” out in the back yard pond of the condo? We leave you with this picture she took of him. What a beautiful bird!
Love and blessings…