Saturday, December 31, 2011

Mailia's Miracle in 2011 Brings Hope for Her Cure for Eisenmenger's Syndrome

Greetings dear ones…and Happy New Year on the wonderful eve of 2012. We pray this finds everyone blessed and happy this holiday season and wanted to send each of you a personal note of gratitude for your ongoing support, prayers and love shown to our Mailia and her incredible healing journey and ask…if you have had a chance to read the updates to her blog and story. 2011 was indeed a blessed year for us and Mailia. She has continued to work hard at doing what it takes to be “alive” right now, on this planet. She truly amazes us all.

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 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

Hurricane Rina, Marriot Resort Marco Island Beach Music Festival with Casey Weston a Gift to Mailia's Miracle

Have you ever found yourself at the front door of an incoming Hurricane?  Watching computer models on the news and hurricane center’s web site made for some interesting times while we were sitting tight in Bonita Springs.

October 28th…was a Friday and we decided early that morning to take a drive over to Sanibel and Captiva Islands which are famous in south Florida for having some of the best sea shelling around.  Mailia was forever asking…”can we go to the beach today”?  So today…after getting a raving recommendation from Nancy at Regenocyte to hit the beaches at Sanibel…we loaded up our little rental car with oxygen, snacks…and plenty of towels and bags for our shellacious booty!

Is there such a word...Shellacious?

Oh well…when we left Bonita Springs to head north…it was very overcast and wouldn’t you know it…the rain started as soon as we started across a long causeway heading straight for the Island.  We made a pit stop at a local visitor center and got some directions to an accessible “handicap” beach for Mailia’s wheelchair. 

We did not stay too long, as it was quite apparent the weather was taking a turn for the worse.  We hustled, both Max and I to comb the beach for shells while Mailia sat amused by a little hermit crab who would not give up his residence for anything.

She was in heaven!~

Beachcombing on the verge of a monsoon...

Heading back to our wonderful warm condo…pinching ourselves daily at how blessed and grateful we are to Nahla and her parents for affording us such a wonderful place to stay, we were thrilled to get back to watch the final game 7 of the World Series between the Texas Rangers and the St. Louis Cardinals…and what a game, that turned out to be…what a finale!

All three of us were rooting for both teams but alas…the Cards took it. Congratulations to the St. Louis Cardinals! You are a deserving champion and David Freese is a deserving World Series MVP!!!

After the game…we looked out the back patio and could hear and see the downpour from the remnants of Hurricane Rina, and wondered if our plans for tomorrow Friday…would be a total wash. You see, two weeks before we left our home in Pasco, we found out that Casey Weston was to be a feature performer at the Marco Island Beach Music Festival on October 29th…the eve before our departure to the Dominican Republic for Mailia’s stem cell transplant.

Kelly Drouin, the Director of the Alliance…Mailia’s nonprofit, had been given charge by Max, Mailia and I to spearhead any fundraising that we could do, or help her with…during our stay in south Florida. One idea came to see if there would be a way Mailia could participate in the festival by representing the Alliance in some way, but unfortunately, we missed the deadline to have a booth because all their vendor space had already been committed.

In speaking with Jada Shigley who is the Director of Reservations for the Marco Island Marriot Resort and lead for the festival, Kelly and I were able to work on some options for Mailia and when we got word what those options were…we or I should say…Mailia went ballistic with excitement and happiness!~

After reading and hearing about Mailia’s story and journey, it was like the Make-A-Wish troops fell into place at the Marriot Resort, only it was Jada and her staff…that made this wish for Mailia, to see Casey Weston…a reality and a dream come true. She and the Marriot Resort gifted Mailia a beautiful Penthouse suite overlooking the event!

Friday morning came…the sun was out and not a cloud in the sky….but boy howdy, the pond in the back of the condo had rose over a foot from the deluge of Rina. We had heard on the news that morning that Naples had gotten over 4 inches of rain which constituted a lot of flooding for Collier County.

No matter…we had our sights set on packing our bags and readying ourselves for our departure that afternoon to Marco Island, a beautiful drive and a gorgeous part of the gulf and southern Florida….and extremely relieved that we would be out of harms way now, with no worries about the storm vying for the Caribbean or the Dominican Republic. Another thanks, to God and our guardian angels for continued protection on our journey. A truly humbling time for us.

We found the Marriot and checked in to our suite, not before taking a taste of French desserts being flambe’ed and crafted by a wonderful chef…down in the lobby. We looked for Jada but she was busy putting out fires as you would not believe the condition she found the beach and stage front that morning.  She was frantic…thinking how in the world would they be able to pull off the event with so much water and flooding from the night before. 
Another miracle in the making…she and her staff did a remarkable job and by afternoon…the beach was impeccable and ready for people to rock!~

Jada sent us these before pictures…and we snapped the after ones for you to compare…now tell me God shows no mercy. This truly humbled us…

Before photos above...Saturday morning and Below...just a few hours later...Transformation!~

The Princess charriot arrives....
We got Mailia into her wheelchair and proceeded down to the beach area where we found we could “exchange” her conventional wheelchair for a “Beach Ready” wheelchair so we could push her easily along the beach.  We were all so very fascinated by the beauty of this incredibly gorgeous area…white sandy beaches, sea shells everywhere, birds…hundreds of birds and oh the beautiful horizon and setting sun that afternoon, right after a hurricane or tropical depression is one to behold.

More gratitude and love…what can I say.  We were so relieved in knowing that Mailia was going to be okay now.  We learned to have so much faith and trust…and to just get out of the way!~
We found an beachside bistro, Quinn’s right adjacent to the stage and were graciously seated right to the side of the stage where Mailia could watch for Casey Weston who would be performing shortly. By this time we were starving and decided to order dinner while waiting for Kelly Drouin to come join us. Yum…tropical island food, breathtaking ocean views and sunset.

How Mailia came to know and admire Casey Weston was also through an unusual turn of events. You see, Greg Finely from Regenocyte had asked us last summer to please go online and vote for Casey who was in a competition on The Voice reality TV show. We did…and also were adamant to come to Casey’s defense when we heard some folks not liking the choice of song she had chosen to perform on the Voice… “Black Horse and the Cherry Tree”. Please click on this as it will take you to the video we created for both Mailia and Casey…one we hope you will like and share.

So hence…the connection.  Our dinner came…as did Kelly and we were all enthralled with seeing Casey up on stage…the acoustics and view…perfect!
I excused myself and went to go up towards the front of the stage so I could get some pictures of Casey for Mailia. Lots of pictures and some video but then came the cool and gutsy gal sitting next to us, Kelly…getting up out of her chair, with half a taco crammed in her mouth saying…I will be right back, I am going to go get some things for Mailia!
And boy did she!~ She went to the table where Casey was sitting with her mom Toni, signing autographs on her CD’s and posters and told her Mailia was here and wanted to know if she could see her. Casey without batting an eye…excused herself from her fans as Kelly grabbed her arm and lead the way to find Mailia.

Mailia and Casey met and hugged and had so much love to exchange…the energy between the two was miraculous and so very healing.  Can’t quite compare Casey to Winter and Panama the dolphins from Mailia’s encounter…but she comes pretty darn close!

Casey gave Mailia a copy of her first CD, Casey Weston and two beautiful posters Mailia now treasures.  Casey…thank you so much sweetie, you have filled Mailia’s heart with so much happiness and joy with your love and generosity.  We look forward to seeing you do great things and above all…being happy in your chosen path.  Mailia will see you again…this we are sure of!
Nine o’clock was cut-off time for Mailia…we could tell she was getting a little tired and we still had to get her back to the room where she could shower and get ready for a good nights rest, for we would need to be up by 4a.m. and out the front door of the Marriot by 5a.m. so as to make our noon flight in Miami to Santo Domingo, Dominican Republic.

Max stayed to watch the Landsharks perform, a band like the Beach Boys only more Caribbean and Jimmy Buffet style, also the fireworks off of the beach which Mailia and I missed.  No problem, Mailia collapsed from exhaustion in a beautiful bed and I took advantage of a nice hot Jacuzzi bath…there was no way I was just going to look at it…well…would you?

We were so very grateful and appreciative of this incredible gift given to Mailia this day. If you ever find yourselves in south Florida…you must visit the Marco Island Marriot Resort. I know we will be back some day…it is truly paradise!...

Thank you Jada…thank you Kelly, and thank you Casey. An amazing experience…so far, Mailia is batting a 100 on this journey…now if Max and I can just relax and not worry about her and her upcoming stem cell transplant , life would be great!~

Next blog post…Mailia’s stay and procedure in the Dominican Republic.

Thursday, December 8, 2011

Dolphin Therapy from Dolphin Tale's Miracle Dolphins Winter and Panama Help Contribute to Mailia's Miracle and Healing During Her Adult Stem Cell Journey

                    ...Dolphins:  Messages and Meanings: breath work, altruism, playfullness, exploration

Our fifth day, Wednesday morning we set out in our little rental car, oxygen and wheelchair in tow…to take Mailia to see the animals and fish at the Clearwater Florida Marine Aquarium.  She was so very excited to finally get to meet the star of the movie we had long heard about, Winter…of “Dolphin Tale” and to learn more about Winter and her story.

We had just taken Mailia to see this movie the other day…and had time to go onto the Clearwater Aquarium’s web site where we found so much information and a listing of different activities she could participate in.
We made our reservations on-line that morning, got our entry tickets and also, a chance for Mailia to have a Dolphin encounter. So many incredible things happen from children and adults, communicating, touching and connecting with these incredible animals or so we have read, can happen. I figured why not. The movie had such a spiritual and heartfelt impact on Mailia and she has such a passion and love for animals both virtually and in the wild.
Our trip took a little over two hours and we found the Aquarium thanks in part to Google Maps and directions and Max’s wonderful driving and my co-piloting skills or backseat driver as Max fondly refers to me. I will still say…Florida drivers who are not snow birds will definitely getcha if you do not keep up flying down the interstate.
We parked…got our belongings and necessities and Mailia’s wheelchair and headed in for our adventure. No sooner we get in through the gate, a wonderful volunteer approached Mailia to show her a real copy of the prosthetic tail, complete with the entire mechanism and sleeve as soft and subtle as silicone gel. This really complemented the movie…for it was this same device that was finally used and not rejected by Winter…in order to have and maintain her physical therapy.

We then stopped to visit the first exhibit containing two sister nurse sharks named Thelma and Louise, and many other fish and rays in their watery world.  Then it was off to find Winter, where we found her swimming alone without her prosthetic tail in a very large tank that you could see from below…or up above the surface.

Moving through this incredible maze, Mailia also got to see many sea turtles and river otters that were permanent residents of this working hospital and rehab center.

 As we wheeled her around, we came to an outdoor tank that houses one of the newest additions to the center, a young juvenile dolphin by the name of Hope. We captured a couple of photos with her story which was so heart wrenching.

Then it was a male dolphin that attracted our attention, the amazing Nicholas captured in a video we will try to post here later.

After this exhibit, it was Mailia’s turn to have her dolphin encounter…with a female dolphin by the name of “Panama”…a roommate to Winter.  I positioned myself across the tank enclosure so to capture photos of Mailia…all the while holding my breath and praying she would be okay…walking out on a narrow platform, with her oxygen concentrator.  She cleaned her hands with hand sanitizer and away she went…smiling ever so brightly.
Max stayed close to her…and let the trainers know we were there should the need arise.  Nope…these incredible dolphins knew the drill.  This dolphin Panama…was actually deaf…and could not hear.  Only hand signals…but I still wonder if she could sense Mailia’s fragility as she was intent on making a connection with her and the little boy next to Mailia.

Mailia showed such enthusiasm and excitement the entire time…she listened to the trainer’s instructions…asked questions and participated giving hand signals and commands to Panama…and rewarding her with treats of fish.  In trying to describe this dolphins healing presence, for Mailia…this was such an incredible energetic exchange that we witnessed.  Panama’s energy caused Mailia to come away so emotionally lifted and happy.  I have read where dolphins can be biologically drawn to imbalances they sense in the human body and are innately driven to “fix” us.  Are they kindred souls, as some have described, joining in the healing ritual through an altruistic desire “to help”…or are they both?  I think the truth of the matter is…only the dolphin knows.

What I will say…is something very special happened to Mailia that day. She came away from this experience totally changed on a cellular level. We were anxious to see, how her upcoming stem cell transplant would play out after this. Not if, but when we get back to Florida for her next procedure, I think Max and I will do whatever it takes, to get Mailia into another dolphin encounter prior to her next procedure. All she could say was…wow…this is the most incredible thing I have ever felt or experienced. Thank you mom and dad…thank you!...

See the movie…be touched by the story. And don’t be afraid to dream and act on what is possible. And if you are ever in Florida...go visit these incredibly loving dolphins who are cared for by the wonderful and inspiring staff and volunteers at the Clearwater Marine Aquarium.
Love, our gratitude and blessings…

The Goforth’s