Saturday, December 31, 2011
Mailia's Miracle in 2011 Brings Hope for Her Cure for Eisenmenger's Syndrome
Our year started out being given the opportunity once again, to look hard and strong at the fact that Mailia’s healing in her lungs from her first stem cell transplant in 2010, had pretty much reached a plateau and she was no longer improving but at least, she was not regressing in her disease and the pulmonary hypertension was not progressively getting worse.
After her Nov. 2010 right heart cath validating her conservative 30% overall improvement and much discussion with her doctors, it was decided that Mailia would definitely benefit from another adult stem cell transplant.
Throughout 2011 Mailia maintained her physical stamina but would occasionally crash and burn when over exerting herself, a constant reminder to Max and I…just how fragile she still was…and is. But she learned to pace herself…and allowing her the benefit of getting out into the fresh air, to go to summer baseball games was giving life to her and affording her freedom and happiness.
Fundraising abound throughout 2011 for Mailia’s Miracle benefit fund…as did an unforeseen donation that came in the form of an “unexpected” turn of events…my being laid off from my job of the last 10 years. With that layoff…came a truly blessed severance package and also, the same day I received my “pink slip” a wonderful manager in my department had stopped by to hand me a monetary “incentive award” for helping her team and projects. All these monies…straight into Mailia’s fund. YES! Thank you God!~ It helps to find the good in everything, does it not?
I found another temporary job that had me bleeding through my ears for 5 hard months but this too, was another blessing to help us financially catapult Mailia closer to her second stem cell treatment.
Then…we got the most awaited news in the fall that Regenocyte was ready to schedule Mailia’s procedure in Florida and the Dominican Republic. They would take what we had raised so far, and allow us to pay back as soon as we could, using the honor system.
Mailia was able to fly by commercial air now, keeping all our fingers and toes crossed, we found a direct flight out of Seattle to Miami and her oxygen provider Lincare, supplying Mailia with a portable oxygen concentrator. Her blood draw was on October 24 and 8 days later, after mobilizing into the Dominican Republic, Mailia had her second adult stem cell transplant, and was able to handle the anesthesia this time, so her three cardiologists, Dr.’s Rosario, Fernandez and Grekos were able to ablate and hold the balloon catheter in place for 3 minutes at a time, to allow her stem cells to "stick" to the walls of her lung vasculature. Unlike last year…where her stem cells had to be delivered “Hale Mary style” because of being much more fragile and sick. See blog post…
Our return to Miami had us scheduled to meet her heart surgeon Dr. Michael Black, who has now a dual role doing surgery both in San Francisco, Ca and now…St. Mary’s in West Palm Beach. On Nov. 4th, Mailia visited with Dr. Black and met another cardiologist on his team, Dr. Emmanouil Tsounias to do some post stem cell exams, echo’s and follow up that went incredibly well. Another blog post…
Now...we are in the holding pattern... Mailia is scheduled for a 3 month follow up on Jan. 25th…which will involve an ECHO to her heart here at home. At 6 months post stem cells or around the end of April 2012, Mailia will then be scheduled to undergo another right heart catherization to measure her lung pressures, this time….possibly back in Florida.
While we are waiting for her stem cells to do their repair work to her lungs we are anxious as all of you to see if this will lower her pulmonary vascular resistance enough to warrant a future repair to her heart defect...a large hole in her lower chamber or VSD which would possibly involve a temp artificial heart (a RVAD) to offload the right ventricle or...a double flap patch with banding of her pulmonary artery per our discussions with her heart surgeon, Dr. Michael Black.
If her pressures are still too high, then we revert back to our Regenocyte team once again, and hope one more round of stem cells will finally take hold and make a difference but this time, we will not wait 15 months between treatments. Come this summer…it will have to either be heart surgery or stem cell transplant. Does this sound urgent? Can we do it once again? Yes we can…with everyone’s help and prayers and our hard work Mailia will get there!
To Mailia’s incredible doctors and their staff…we pray this will be her year and you will be graced with the power of love and hope for it is through your pioneering spirit that Mailia and others lives will be forever changed. Thank you!
This has been a very challenging journey for us all...but we know it is for a higher purpose, and Mailia is definitely an agent of change in this world who will make a big impact to others with her future contributions and incredible story of her miracle journey. She is pioneering this new procedure for us all and we pray...it will help so many more in our country and around the world.
Max and I will continue to stay busy working hard to help our sweet Mailia and we continue to be so very grateful especially to all our friends and family who have come forth to help us in so many ways by giving of themselves, their time, their resources, donations, prayers and comfort and being an integral part of Mailia’s Miracle.
We leave you hopefully connecting in 2012 to a message found here…you may recall the starfish story. On the beach where thousands of starfish have been stranded, an old man is throwing them back into the ocean. A young man walking by tells the old man “You can’t possibly make a difference.” As another starfish lands safely back in the sea, the old man replies… “It makes a difference to that one.” And he keeps picking them up and saving them, one by one.
We must be like the old man who is willing to make a difference in someone’s life and to see the opportunity that we have, to save and transform lives. We are honored and thankful you have allowed us to share Mailia’s Miracle with you and your loved ones.
We love you…Max, Andrea, Mailia and SteelDust