Saturday, December 4, 2010

Gratitude...Mailia's 5 Month Follow Up, Right Heart Cath & Second Stem Cell Transplant

               Mailia and Dr. Carl Garabedian - Nov.2, 2010

November 2, 2010 was a day we had so anticipated.  The night before, Max, Mailia and I ventured up to Spokane, Wa. in rediness for Mailia's right heart cath procedure.  We drove over to Post Falls, Idaho to have dinner at a the HotRod cafe and catch the opening game of the World Series.  The 20 or so LCD's in the place had Monday night football on and Mailia asked if they would let us have one TV to ourselves and put on the game for us.  What a wonderful bunch of folks!  They did and Mailia prayed, she rooted hard for her favorite team...the Giants.

After dinner, desert and most of the game...we ventured back to our hotel adjacent to Sacred Heart Childrens Hospital.  We took Mailia in to the room with her companion Steel Dust to catch the remainder of the game while Max and I fetched Mailia's belongings...as she never travels light.

She was so happy and ecstatic to see the San Francisco Giants win the first game of the world series, while her dad and I sat there and sulked for the losing Texas team.  I think it is wonderful though, to consider all that we might accomplish when in tune with our heart, we put others so gracious about the game, or an event that brings so much unification and joy to so many, or even activities that galvanize the world through play and good sportsmanship into the mix of possibility.

And on this eve...Mailia has her own game she intends on winning.  I wonder how she will bring her own giant transformations forth?...but we all know, it is time for a Grand Slam rally so to speak.

At 6:00a.m. the following morning, we found ourselves going through the hospitals admissions and getting all or Mailia's vitals and records in order.  We met with nurses and Dr. Garabedian's cath team prior to their taking Mailia, who at the time...was doing a great job of staying clear, calm and focused.  As they came to take her to the catherization lab for her procedure, we accompanied Mailia, stayed close and held her hand until she was anesthetized enough to warrant our dismissal.

Max and I stayed close by in the family waiting area, praying for our Mailia while every 35 minutes or so, someone would pop their head in to tell us she was doing okay.  Finally, we met up with Dr. Garabedian and had a conversation about what they had found during their procedure.

Basically...they did not notice a huge change from a baseline cath that had been done in June 2006 to present.  He said what he had learned from this cath is that Mailia still has severe Eisenmenger's Syndrome and high pressures in her lung vasculature but one thing they did notice, was that she was very responsive to medications given i.e. oxygen and nitric oxide, which in the past...she was not.

He said he was going to send this cath data to Dr. Black in San Francisco to think where we should go from here because based on these numbers...he was concerned about banding her pulmonary artery for reasons that would increase her right heart pressures and have risks of causing acute right heart failure.  Garabedian thought it best to pursue a more conservative plan like treating her with medications that she might respond to now and take the wait and see approach to see if her pressures come down...and if they do come down then consider further banding or other types of procedures.

So concerned with the data we had in hand...I sent these reports directly on to Dr. Black and Dr. Zannos Grekos at Regenocyte.  A week later, while driving home I received a wonderful call from Dr. Grekos telling me he had reviewed the caths...both 2006 and the most recent one, against Mailia's cath from June 2010 that she had in the Dominican Republic...that Dr. Garabedian did not have in hand at the time, to take into account...and that he could see at least a 20 POINT PRESSURE DROP!  That was from the time her stem cell transplant was done 5 months prior to present cath on Nov. 2.

So yes...that makes perfect sense.  Why all this time, during this summer and fall we have been witnessing Mailia getting stronger and showing more bouts of energy.  I had said in earlier posts that I though Mailia had at least a 30% overall improvement due to the stem cells...but confirming that a 20 point drop has materialized sent us reeling!

Dr. Grekos told us to go celebrate and hopefully we could sit down and plan another round of stem cells for Mailia...as he explained to me that when Mailia underwent her transplant in the Dominican Republic this summer, she was only afforded a "mini stem cell delivery" so to speak.  Dr. Grekos and his 3 other cardiologists would have liked to have seen the ablation or balloon they use through the catheter hold the stem cell solution in a little longer so as to have better vascular adherence...but were fearful Mailia's lungs would not handle it and they would risk losing her.

But to see how she improved...with the mini delivery even, sets up the opportunity to do another round of stem cells that will hopefully guarantee a better outcome yet.

So what does this all mean?...well, looks like we have to jump ahead to Phase 3 before Phase 2 can even be considered.  Another round of adult stem cells...and soon.

Then...just as we are happy celebrating the good news Mailia takes a turn for the worse.  A week after her cath...she had been complaining of the sore throat she had upon leaving the hospital, as her throat was severely irritated with road rash from being intubated. 

I started to give her everything in my arsenal...in hopes of keeping the crud that had hit her father the week prior and kept him home from work for 3 weeks with a bronchial infection, the worse I have ever seen Max debilitated by.  I contacted Mailia's doctor and asked if we should go ahead with antibiotics for Mailia...and he said no, to wait...see...especially since she showed no signs of fever.

The sore throat developed slowly into a cough...and her doctor prescribed her cough medicine, the strongest and safest she could take plus antibiotics.  That did not help, for a week ago Monday she went into a coughing spat and low and behold...she caused a horrendous lung bleed or what is called hymoptysis.

I acted fast...and prayed hard.  Her doctor said to watch her and to bring her in to the ER if it got really bad.  Max ran to town and brought home some fresh organic cabbage which I juiced for Mailia that very day.  Cabbage juice has been used to stop bloody ulcers...and has helped her previously.  I gave her an entire 32 oz bottle of ASEA which are reactive molecules based on redox signaling.  Both these together, had the bleeds under control Tuesday the next day.  I kept up this protocol and worked hard at keeping her from coughing.  Two weeks now...she is feeling better and on the road to mending from another frightful ordeal.

There is one thing I notice that consequently happens every time Mailia goes in for a procedure...she gets very anxious and when she stresses...her immune system goes into the tank.  Something we will work on...prior to the "next" one.

I pray for the day when Mailia will be triumphant over all that we and everyone else...has put her through.
Batter Up Mailia!~  Your day will come sweetie!



Sunday, October 3, 2010

In Gratitude For Mailia's Miracle Phase 2 & 3 We Trust Will Unfold Beautifully

Phase 2 and Phase 3 you are asking?  Well yes, Phase 1 we considered the journey in finding all the players and team so to speak, that would catapult Mailia to have her first treatment with adult stem cells in Florida and the Dominican Republic. 

But...so what has happened since Mailia's stem cell transplant this past June?  This is where I will begin explaining what has transpired and hopefully bring everyone up to speed...with an update I have so wanted to share this weekend.

About a month ago, I decided to drop Dr. Randas Batista, who is a heart surgeon from Brazil, a quick hello and update on Mailia.  He told me that the 30 year old female Eisenmenger patient he operated on last year in Syria, was doing well and getting married and that he would be attending the 3rd Razavi International Cardiovascular Surgery Congress in the city Mashhad Iran October 5-8 and extended an invitation to Dr. Black and I...to come see his procedure first hand.  I replied back to him and also to Dr. Ahmad Rajaii-Khorasani that I was thrilled and grateful for the invitation, but after checking flights, costs and logistics, there just was no way I could do it with our limited financial resources...thinking we must save for Mailia's future procedures although this had great merit for my going and attending, so as to futher document the advantages and benefits of Dr. Batista's procedure in treating Eisenmenger's syndrome...I had to regretfully say that I could not go.

So after taking Mailia to California for her 3 month follow up appointment to see her other Cardiologist Dr. Popper, we waited with great anticipation during this past month, to see what he and Mailia's heart surgeon, Dr. Michael Black would recommend as far as a surgical option or path forward.  Bare in mind, Eisenmenger's syndrome is a condition that has no viable medical fix curently here in the US, only double lung and heart transplantation which has never been an option for Mailia per many doctors recommendations and expert medical opinions.

While waiting for direction from California...Mailia had a scheduled followup appointment last Wednesday with her local cardiologist Dr. Carl Garabedian from the NWCCHD in Spokane, Wa. He was happy to see her, and asked how she was doing.  We told him she was doing much better, but that after a month, we were still in limbo with our team down south...as to a path forward.  He excused himself for a moment...and disappeared out of the room only to return 5 minutes later, saying he had made a call to Dr. Black, and discussed Mailia and wanted to know Dr. Blacks and Popper's plan for her and also if it might not be best to perform a new right heart catherization to measure her pressures and get good data, if she will be able to go forth with the banding of her pulmonary artery...or, the placement of a double flap patch to her VSD or...a RVAD or ????

Dr. Black felt this was a good idea and said to proceed with the cath.  We thanked Dr. Garabedian and headed home, feeling anxious but relieved that we were going ahead with additonal testing to validate her potential surgical procedure(s).  Mailia of course...was oh No...not again!

The following day, I placed a call into the NWCCHD to make Mailia's appointment and while waiting to hear back from them, decided to touch base with Dr. Zannos Grekos of Regenocyte, who performed Mailia's initial stem cell transplant in the Dominican Republic.  I mentioned to Dr. Grekos that we had a plan now, and that was to have Mailia go through another right heart cath so a decision could be made on if or when, she could have her initial heart surgery.  He asked me...to tell him, how she was doing.  By that...he meant, what do you see that is different?  I told him...that Mailia has more energy.  Her oxygen saturations have not changed, she still requires oxygen but she has more energy.  He asked again, but to what extent...would you say, a 10%, 30% or 50% improvement overall?  I told him that I felt she was about 30% and that was conservative.

Dr. Grekos told me..."You need to tell her doctors that, and hopefully this will be the conduit to giving us the go ahead to band her PA, but I still think, she is going to need a second round of stem cells".  I asked Dr. Grekos, this question:  If after Mailia has this upcoming right hearth cath, and they then decide to go ahead as planned with banding her PA...how long after this, should she have a second round of stem cells?  Dr. Grekos said...that after 6 weeks post surgery, allowing enough time for her to heal, she should benefit from having her second round of stem cells.

Great!  Wow!  Okay...

So now, I feel a whole lot better, but still a little perplexed about the potential nay-saying and concern surrounding the PA Banding or double flap-patch or RVAD.  Dr. Black, has not yet sold the IRB (Internal Review Board) of his hospital, on the idea of treating one very special patient with this modality.  Has never been done for a VSD successfully...at least with a stem cells backup...but it has been done, abroad of course.

So here I go again, my top guns who I lovingly and fondly call my angels, prompting me to contact Dr. Ahmad and Dr. Batista once again, before the conference next week in Mashhad Iran.  I told them I was so grateful for their gracious invitation but would not be able to come to witness Dr. Batista's operations nor be able to validate the one Eisenmenger patient he operated on last year who would be in attendance at the conference to give her testimonial of her healing miracle.  And if they could please share their clinical data or videos on their presentations with us and Mailia's doctors.

Dr. Batista wrote me back, as did Dr. Ahmad Rajaii-Khorasani and said that it was handled.  Dr. Batista forwarded an email to me that he received from Dr. Joel Dunning from London England, who is planning on attending the conference in Mashhad Iran and will be interviewing Dr. Batista, for a series titled "The Giants of Thoracic Surgery" to be featured on CTSNet which is the World's Premier Website for Cardio Thoracic Surgery!

Of course, I quickly emailed back and thanked them and quickly emailed Joel Dunning to ask humbly if he would be able to focus more on questions relating to Eisenmenger’s syndrome and how and why Dr. Batista believes that banding the PA is so important to a patients regression of the disease and HOW this can be accomplished?

I explained our situation, and the need for more clinical data to substantiate Dr. Batista's stance on banding the PA in Eisenmenger's syndrome and also gave him Mailia's web site and blog in hopes, that he would agree to document not only the interview, but his patient as well.

Well, bless his heart, Dr. Dunning graciously replied to my e-mail and said the following:

I have already seen your website in my research for the interview. Do not worry. I will be putting this interview on the front of CTsnet the worlds biggest cardiac surgery website.

Wow...!  I emailed this to Dr. Black in California and he too...said "The more information for the IRB...the better!

So this is where we are at.  We have confirmation that Mailia is scheduled for her next right heart catherization procedure on November 2nd up at Sacred Heart Medical Center in Spokane, Wa.  Next we will hopefully get a path forward on Mailia's surgical procedure(s)...this herein, reflects what we have termed Phase 2!

After Mailia's procedure, we will figure out the logistics for another round of stem cells for her.  This will eventually be her Phase 3!

How will we fund all this?...I am chuckling right now because I truly don't have a clue but you know what?...We trust...and we have faith!  It will happen and it will all unfold beautifully!

How did we luck out?...I am humbled and intrigued at the incredible team of doctor's and surgeons we have assembled but credit a higher power with this blessed and unique opportunity for Mailia.

Our heroes of medicine, those unique individuals who in their communication tell me "Not To Worry" my God, I have so much faith and admiration for the lot of them.

Thank you good doctor's!  We love you and appreciate all you are doing for Mailia and her Miracle of healing.

Dr. Batista, Randas - Curitiba, Brazil
Dr. Black, Michael - California Pacific Medical Center
Dr. Garabedian, Carl - NW Center For Congenital Heart Disease
Dr. Grekos, Zannos - Regenocyte



Sunday, August 29, 2010

Mailia’s 3 Month Follow up in Crescent City, CA., Various Dr.’s Viewpoints and One Happy Tiger Cub


What a month it has been dear ones, since our last post…mostly, what a blessing to see Mailia getting stronger by the day and enjoying her new found energy. We cannot believe she is the same person from just 3 months ago. Prior to her adult stem cell procedure, she was lucky to walk from the living room to the bathroom without getting short of breath, but now…we have witnessed her having the stamina to pick up her heavy E tank of oxygen and walk out the door to our vehicle without passing out!~

We try to encourage her to still pace herself and to refrain from over doing it…for we know how she so wants to be free of the oxygen and constraints the pulmonary hypertension brings, but we also want the stem cells to keep building and helping her lung vasculature to the point where she will be able to tolerate surgical repair to her heart.

Regenocyte has charged us with follow ups for Mailia at 3 month intervals…so in light of her having her baseline ECHO done in San Francisco by her future heart surgeon, Dr. Michael Black…Dr. Black afforded us the opportunity to meet Cardiologist Dr. Robert Popper, who is also from California Pacific Medical Center, up at their satellite clinic at Sutter Creek Hospital in Crescent City, Ca. This saved us having to drive all the way to the S.F. bay area…and Max once again, fired up the Mailia’s Miracle mobile and loaded us up…for a much shorter trip and adventure than the last road trip we just made this summer in taking Mailia to Florida and the Dominican Republic.

We left at the crack of dawn this past Thursday and 10 hours and 543 miles later, we arrived into northern California’s Crescent City…after a beautiful and scenic drive through southern Oregon and some gorgeous stands of old growth Redwoods. We checked into our hotel, had dinner and set Mailia’s Wii up much to her relief…the TV was accommodating for this.

Friday morning we ventured out to find the hospital and got there an hour and a half early not knowing what to expect, other than getting Mailia in for an ECHO. Dr. Popper’s assistant Darlene had been trying to reach us for a couple of days to see if we could in fact, come in earlier because like us…Dr. Popper travels up to the Crescent City hospital every 3 months for 3 days…to see his long standing patients…and drives the 15 hour round trip…every time. Plus…Dr. Popper is no spring chicken…he is 80 years young and still going strong!




We were met by a gracious and spirited technician by the name of Randy who took charge of getting Mailia all set up for her ECHO. It was a pleasure to be able to discuss with him, about Mailia’s recent journey to the Dominican Republic and he was very interested to learn about her treatments and what is forthcoming for her. Unfortunately…he was not able to get very good views of Mailia’s heart in the room where we found ourselves initially…so he asked if we could remobilize Mailia in the hospitals imaging department where they were better equipped.



After 3 hours, we finally finished up with her ECHO and Dr. Popper came in to check all the various views and stats…he asked a few questions about Mailia’s initial diagnosis, how many caths she has had and previous treatments. When I mentioned about the stem cell therapy she recently underwent, similar to Cal’s…he said, I am going to say something but do not want you to take it personally. He asked if I had ever heard of a heart surgeon back in the ’60 who used to close VSD’s with high pulmonary resistance and how he lost every single one of them. I told him no…but that yes, we are aware that closing Mailia’s defect might be contraindicated at this point…that what we are truly looking and hoping for is a means to facilitate her lungs to further heal…not only with the stem cells, but with a mechanical means such as banding her pulmonary artery, or applying a double flap patch on her VSD…or even, a RVAD to help offload her lungs and relieve her heart…giving the stem cells more umpf to help regenerate her lung vasculature…so that later, as her pressures really come down…to safely and permanently close the VSD.

He said after I conveyed this…you are right on!

So…now we wait a few more days for Dr. Popper, in all his wisdom and experience to review Mailia’s ECHO results at 3 months against her baseline ECHO so he, along with Dr. Black can decide a path forward for Mailia. We trust both Dr. Black and Dr. Popper to find a workable solution and path forward and look forward to really doing some serious discussions here shortly.

This brings me to a related case in point. Wow…another incredible sign divinely sent…that we are on the right track.

Last week, I received an email from Brazilian Heart Surgeon Dr. Randas Batista with new photos of his hospitals construction, still in progress with interior fitout. He also told us that a young girl with Eisenmenger’s from Syria, who he had banded last year, was doing great now, confirmed by the attending heart surgeon, Dr. Ahmad Rajaii-Khorasani from Mashhad Iran with the following:

Hi Dear Randas:


The girl who had PA banding is now doing great & she is getting married soon. I have two other patients for this year .One VSD and the other one PDA.


I have asked the nurse who took care of your patient in the ICU to get her case ready to be presented and the patient will also be invited to come to the conference and answer any questions. Love you man. Looking forward to see you here. Thanks Ahmad

I am hoping to make contact this week, with Ahmad and ask if he would also send us and Dr. Black their published work and findings pertaining to this young woman. Now granted…she did not have stem cell therapy, but as I have believed and said all along, the lungs and body can heal…given the right elements. I pray they will continue to find ways to help improve their patients lives and outcomes…to that extent, I pray for all our world healers and physicians that they too, continue to find ways to help afford positive healing.

Mailia chanted her wishes repeatedly to see a wildlife safari in route to our next evening stop before our long leg home. We were going to spend the night in Bandon…by the sea and so tried to make our way north on hwy 101 along the coast. We got to the Wildlife center about 35 minutes before closing and Mailia was so thrilled to see adult leopards, lions, tigers and their beautiful babies. Mailia even had the opportunity to pet some little black leopard babies and also bottle feed a gorgeous baby Bengal tiger cub. We were so grateful to the staff there…for allowing Mailia this amazing experience…one she will never forget.


We ventured into Bandon and found our hotel near the beach…a gorgeous place with a beautiful setting and view. The next day…we got up early…loaded up after a quick breakfast and high tailed it home, in time to meet our wonderful and incredible friend and family member…Ramona, who without her help caring for our home and critters…we would be hurting in a big way. She hugged and kissed Mailia and ran out to her car to head home and then to the hospital…as her second daughter was going into labor with her first grandson. We are so blessed with Ramona…and grateful for all her love, support and help.

After a quick accounting of all our fur kids…we headed to Dust Devil Stadium for Mailia’s baseball fix for the evening.  She is pictured here, one last time with two wonderful men and brother's who met Mailia last season, Dale Moe from Delaware and Duane Moe from Kennewick, Wa. and who are part of her miracle. Only one more week of baseball left now…as fall is quickly approaching and Mailia is feeling the anxiety of summer’s end once again. I think…we all have a greater appreciation of our daily lives and the events that are beautifully unfolding before us.

It is time to get busy again…staying focused and requesting much needed and appreciated help to continue fundraising for Mailia’s next big step and procedure and to continue however we can…to help others to do the same.  We will keep everyone posted, as soon as we hear from Dr.'s Black and Popper on Mailia's next path forward.

We thank everyone for their continued support and prayers...we are so very grateful and humbled.

Love and blessings...
The Goforth's

Thursday, July 22, 2010

One More "Impossible" Disease Reversed By Repair Stem Cells---NOT Embryonic Stem Cells


Last Sunday we were contacted by our local NBC affiliate, KNDU reporter Hilary Whittier who asked how Mailia was doing and if she could come out to do a follow up story about Mailia’s Stem Cell procedure. We were thrilled to see Hilary and it was truly wonderful and humbling to be able to tell another soul…all about Mailia’s incredible journey.

It has been six weeks since her lungs accepted all her own adult stem cells and we are thrilled and truly blessed to see Mailia thriving and healing…every single day.

We owe so much gratitude to everyone for their help and prayers and hope that it is evident in the miracle they have chosen to support.

Today we were also blessed with seeing a wonderful post on Don Margolis’s web site which I have copied below and I also encourage folks to visit his web site from time to time to learn all they can about Adult Stem Cell Therapy and people’s stories…and speaking of which, I encourage EVERYONE who is part of “the family” or “club” who has received and benefited from Adult Stem Cells to send Don Margolis an email or letter telling him of their journey so as to help inspire others.

Here is the post from DonMargolis.com:

If you ask your pulmonologist if stem cells can help your lung disease (COPD, emphysema, pulmonary fibrosis, etc. etc.) he/she will tell you “No---stem cells are snake oil.” That is what we hear from almost every lung patient who comes to us trying to get out of the medical prison imposed by all lung conditions. We know that stem cells have helped dozens treated in Latin America and Europe, but a disease almost no one has heard of?
Ten years ago, one teen in the state of Washington was told she only had months to live, but today, 16-year-old Mailia Goforth has defied the odds and continues to surprise doctors.

At the age of 3, Mailia was diagnosed with Eisenmenger's Syndrome. It's a heart defect that causes high blood pressure in her lungs and doesn't allow her to breathe on her own.

But recently, Mailia and her family took a trip across the country for a special procedure using stem cells. The hope, to fix her lungs and be one step closer to closing up a hole in her heart.

After more than a month of recovery, Mailia says the $50,000 operation worked, and she's getting stronger everyday.


She can now take out her breathing tube and even find enough energy to play outside. She tells me, after a few more operations she could be able to run, jump and do everything most 16-year-olds can do.

"It feels amazing," she said. "I know I'll be able to do everything I've always wanted to do without having to get sick anymore... just to be free at last."

Free at last from the worry and stress of her disease is what the family is wishing for. To get there, she still needs her lungs to get stronger from the stem cell surgery. Once the lung pressure goes down she will be able to have heart surgery.

The video is HERE.

To follow Mailia's progress or donate to her cause go to http://mailiasmiracle.com/

Thank you Don. Thank you Dr. Grekos and Regenocyte. Thank you God and everyone for your help and prayers once again…all our gratitude!

Max, Andrea and Mailia

Saturday, July 17, 2010

Mailia's New Stem Cells, New Cardiologist, New Friend and New Mountain

Dr. Carl Garabedian and Mailia

Follow up is an important part of Mailia’s stem cell therapy and the staff at Regenocyte came through loud and clear on this. It is requested that she be seen for follow up and testing after one month…and subsequently every three months there after.  It is part of the plan laid out for all Regenocyte patients who are now part of a unique club and family.  We are truly grateful for the followup aspect to this therapy...for how else can it be let known, how a patient does and how they ultimately will benefit from their stem cell therapy without historical data to support it?

Sounds good to me...for I know each patient is playing an important role in their individual cases where it concerns their documented progress.  It is part of the protocol...a necessary tool so to speak....but I say look, the proof is in the pudding.  Click on the Regenocyte link and look into the faces of actual people who have been there....and been blessed! 

So with prescription in hand, we set out to find a new Cardiologist closer to home and one that could follow her locally. Mailia’s pediatrician…Dr. Nazar, recommended we touch base with Dr. Carl Garabedian from the NCCHD in Spokane Washington saying that although Mailia has benefited from going all the way to Portland, Oregon to be seen by Dr. Douglas King, her pediatric cardiologist for the past 10 years…that it was time she be followed by an adult cardiologist.

Adult and Pediatric Cardiologist Dr. Carl Garabedian comes down to the Tri-Cities a couple of times a month to a satellite clinic…and it was here that we had the opportunity to meet him personally for Mailia’s one month appointment.

He was very interested in meeting Mailia to learn about her procedure…for he told us he had several of his patients wanting “other options” and how open he was…to alternative medical breakthroughs…adult stem cells, being one of them.

We spent a good THREE HOURS with Dr. Garabedian, educating him…going over Mailia’s history, all her medical records and especially her recent trip to Florida and the Dominican Republic. He listened to us, to her heart…spoke kindly to her…he did an ECHO and confirmed that her heart function looked good but no changes…yet, at one month post x-plant.

We mentioned that her three month appointment might be done in San Francisco with heart surgeon Dr. Michael Black to assess her for heart surgery and that we would keep him abreast of her progress.

We thank Dr. Garabedian so very much for kindly affording us this important after care Mailia will require and also, thanked him from a deeper and a higher place that brought us all together to hopefully…make a huge difference in helping others.

Which brings me to a case in point…or something I need to interject or reference now. When I raced home that day from work to pick Mailia up to take her to meet Dr. Garabedian, I stopped at our mail box and found a card that was addressed to her. I handed the card to Mailia as we raced towards town…and she said, Mom! You won’t believe this…you got to see this it is a letter and a donation! I quickly pulled over…and read the following to my utter surprise and astonishment:

Dear Mailia,


My family and I truly hope you are doing well and have you in our prayers. Finding you and hearing about your treatment has given us hope.


My dad has pulmonary fibrosis and his only option was a lung transplant. Because of you we have a new and better option.


Anyway, we are very grateful to you for sharing your story and look forward to seeing your new blogs. I feel in my heart that your treatment will be successful. I hope sometime we have the opportunity to meet you.


We wish you all the best and many blessings.


Shannon, Mario & Martalicia Toranzo

Wow! From their heart…to her heart…to my heart and now to yours. I believe it is God’s plan that we all remain in faith and gratitude. Thank you for allowing me to share this Shannon…and thank you for your generous gift to Mailia’s Miracle, we are truly grateful.

Mailia continues to thrive every day. She gets outside for her daily dose of sunshine, oxygen still in tow as her oxygen saturation levels are still hovering around a lower mid range but one thing she and we do notice, are little bouts of energy here and there. A little more energy. Okay…we will take that as a sign the stem cells are busy doing their job. Building blood vessels in her lungs.

We will continue to monitor her progress and try additional therapies we feel she will benefit from that we will list on her therapies page. Her diet consists of healthy food with lots of organic vegetables and fruit, staying hydrated throughout the day and detoxifying and chelating all of the chemicals like contrast dye she was exposed to during her cath and the CT exams and hospital stay.

I leave you all…with a photo of Mailia and friends Stu Saslow and Allen Minton on top of the summit of Mt. Baker in western Washington this past week. The little “Peak Bagger” has two mountains under her belt now…the stem cells are doing their magic…creating her miracle! Thank you Allen and Stu!! We love you!...and thank you friends and family, for stopping by, and keeping Mailia in your thoughts and prayers!

Love and blessings…

Sunday, June 27, 2010

Three Weeks Post 58 Million Adult Stem Cells - Mailia Ascends Mt. Rainier with Friends!

Stu Saslow, Larry Richards, Mailia Goforth, Dave Koontz and Allen Minton

Well...sort of. You see...Mailia has always dreamed of someday, climbing some of the most majestic mountains on earth, in addition to all the other worldly and sporting activities she breathes life into on a daily basis. Having Eisenmenger's syndrome never dawned on her...that she could not do any of these things.

Three years ago, while at a seminar called Life Directions, Mailia was asked to draw a picture of her ideal life...a scenario where she could picture herself being the most happiest. She drew a picture of herself on top of a mountain in Tibet...holding an eagle stretched out on her arm...saying "I am a warrior of the Light...This is my destiny! And she told her story to 700 people that day and gave the gift of inspiration to so many there.

On the way home from Vancouver, B.C....she insisted she wanted to climb a mountain and that she was ready for it. To humor her so she would stop asking...and so I would rightiously appear apathetic with her, I asked Max to pull over on one of those "view" exits just past Ellensburg ascending Montash Ridge and I proceeded to tell Mailia...okay sweetie, before you are able to launch on one of the bigger mountains, lets start on these small ones first and see how you do.

I helped her out of the Excursion, with oxygen in tow...and told her we would try to climb to the top of this snow covered hill and she would lead the way, and I would carry her O2 from behind...wink...wink. My mom had a saying in Spanish...a dicho which went like this: Tanto quiere el diabol a su hijo que lo persina! That of course, came to my mind...translated it goes like this...The Devil loves his son so much that he will give him the sign of the benediction. Well...what can I say.

Needless to say...Mailia made it a mere 30 feet...and stopped dead in her tracks sobbing and said she could not do it. I felt horrible and grabbed a hold of her and hugged her hard and told her she was and always will be a very powerful being and to never give that power away, especially to a belief.

I encouraged her to keep believing she was capable of doing so many incredible feats, and her life thus far...has been miraculous!
So when my co-workers David Koontz, Larry Richards, Allen Minton and Stu Saslow told us that they were going to be climbing to the summit of Mt. Rainier I quickly asked...if they would PLEASE take Mailia with them! I told Dave...it is not about the mountain...it is the climb and for Mailia, going up with them in spirit held to her own vision and desires. What a gift they were able to give our precious Mailia. They took a full blown photo of her all the way up to the summit of that majestic mountain and told us that "she did just fine...and how it was a privilege to climb with her". We give our heartfelt thanks to these wonderful men and friends for giving Mailia such an incredible opportunity...one for personal growth and extreme happiness!
But there is another interesting facet to all this so please allow me to explain further. For Mailia's 15th birthday last year, it was her wish to meet her idol Michael Phelphs at a Power Within seminar up in Vancouver again. For some reason...that city has our number! Michael Phelps was nixed from the lineup at the last minute so she had to settle for meeting Dr. Mehmet Oz.

There was quite the line-up of motivational speakers...but one that mesmerized and clicked with Mailia was a wonderful man by the name of Jaime Clarke and his childhood dream was to be a mountain climber.
He spent most of his life either preparing for or climbing mountains. And he also had the great fortune to climb the tallest mountain in the world, Mount Everest.
Little did he know that his greatest reward would not be reaching the peak, but the lessons he learned on the way, because the mountain climber’s true measure of success is not about reaching the top, but the journey it took to get there.

So I wish to include an insert Jaime wrote from his web site Your Summit Awaits and Jaime Clarke
to add one final breath of inspiration to Mailia's Miracle...Thank you Jaime!
 
Your Summit Awaits...
 
The dream of the mountain climber is to stand on the summit. The successful climber will stand there for only five or ten minutes.

The preparation and the training to get there? Well that takes five or six years.

It’s very physical training obviously designed to build the body.

It is also designed to PREPARE THE MIND.

Your Summit Awaits Key Concepts
• Make Your Dreams Your Goal
• Care Enough To Confront

• Follow Your Passion Without Obsession

• Keep Your Promises Through Your Actions
• Face Your Fears, Focus on What’s Important

• Thank Those Who Help You to the Top
• Look to the Future, Your Summit Awaits


Key Concept 1 – Make Your Dreams Your Goal
• Don’t be afraid to hold really big dreams

• Make every step, even small one, move you toward your goal
“My Childhood dream was to be a mountain climber.

Key Concept 2 – Care Enough To Confront

• Find the courage to be sincerely honest
• Embrace conflict, ask questions, don’t take it personally

“Life demands that we care enough to confront.”


Key Concept 3 – Follow Your Passion Without Obsession

• Passion fills us with the joy to achieve

• Obsession blinds us from reaching our goals

“Passion will get you to the top, but obsession…obsession will get you killed. And we need to know the difference.”


Key Concept 4 – Keep Your Promise Through Your Actions

• Your beliefs are reflected in the promises you keep

• Make a commitment to keep your word

“In our lives, what matters is not the promises we make, but the promises we keep.”


Key Concept 5 – Face Your Fears, Focus on What’s Improtant

• Momentum is created with the first step you take

• Act boldly, live the life of your design

“Focus on what’s important: the relationships we build, the work we do, the people we care about, the skills we cultivate.”


Key Concept 6 – Thank Those Who Help You To The Top

• Affirm the very best in people

• Value the contributions of others

“It’s important, when we get to the top, to look back and appreciate all the others who made it possible o get there and give thanks.”


Key Concept 7 – Look To The Future, Your Summit Awaits

• Hold a positive image of your future

• Share your dreams

“Go forward in the work that you do and in the life that you live knowing that your summit, however distant, or veiled by clouds, is ready to welcome you”.

Thursday, June 17, 2010

Mailia Hits a Roadblock…We Detour to Memphis, Tn.

Upon our return to the U.S. from the Dominican Republic, we were so very anxious to see how Mailia would fair the plane trip three days post stem cells. She seemed to do alright, despite desaturating some and being a little tired.

After checking Mailia upon arrival to our hotel in Miami…we spoke with Dr. Grekos and his team back in Bonita Springs and they told us if Mailia was doing okay…they would give us their blessings to go ahead and head home. We spent the morning on Sunday June 6th catching up on laundry and repacking the Excursion for our long adventure back home.

Mailia’s cath site around her right groin was still very sensitive and painful so she kept walking to a bare minimum and used her wheelchair extensively. As we headed north passing through Orlando, not even the signs of Disney World and Sea World peaked her interest…as she was still wrought with soreness from the procedure and just home sick and glad to be back and heading in a westerly direction.

Max and I too were so relieved that Mailia had come through the procedure in the Dominican Republic and weathered the trip there and back, for that part was not an easy feat for Mailia. One, being on oxygen and a high flow at that, required us to navigate the system to make sure that American Airlines, who flew us there and back…and I might add, did a superb job at handling Mailia’s needs for oxygen support and shuttling to and from the check-in points to the gates. We took her wheelchair with us to the D.R. and Regenocytes DR representative Yanely, saw to the supplemental oxygen she would need while there in the form of portable E-tanks and oxygen concentrator.

If we had it to do over, I strongly believe transporting by air ambulance is the way to go for anyone with high pulmonary pressures. It is sad our medical insurance would not cover this for Mailia and we did not have an extra 20k to fund this but believe now, she would have done so much better all around.

But as we headed north…our final destination being Pasco, Wa. we would get as far north as Valdosta, GA for the night. The next day we ventured through some beautiful country through Alabama working our way towards Tupelo MS for our second night stay. It was during this late afternoon that we noticed Mailia was just not herself…and her oxygen saturations seemed lower than norma.

The next morning she was very lethargic and not looking well at all…so I got in touch with Dr. Grekos office and told them my concerns. Mailia’s nurse Micheline asked what the closet city was to us…and I told her Memphis, TN. She contacted the ER doctor on site at the LeBonheur Children’s Hospital and told us to head straight there…and she would fax all of Mailia’s medical records to them and let them know her status so they could check her out.

We arrived at the hospital and the ER staff took charge of assessing Mailia. We met with a Dr. Ciega who took all of Mailia’s medical history and also with their staff cardiologist Dr. Rush Waller. While on the phone with Dr. Grekos back in Florida, I handed the phone over to Dr. Waller to converse with him relating to Mailia’s stem cell procedure. With Mailia’s saturation levels being so low and her hemocrat levels a little low also, Dr. Waller wanted to rule out any embolisms that might have occurred in her lungs or cath site. He ordered a Cat Scan, ultrasound and ECHO which all came up normal thank God!

Dr. Grekos had told us that it was his feeling that Mailia’s saturations were dropping due to the fact that he has seen several of his patients who underwent the stem cell procedure go through a period experiencing cold like symptoms with coughing and that the stem cells are making new vessels but are not connected yet. So he told us there was going to be some shunting of blood through her heart which would reduce oxygen.

Dr. Grekos was right on…but we had no way of knowing for sure and it was better to be safe than sorry. We are so very grateful to LeBonheur Children’s Hospital and the staff there who cared for Mailia during her stay. It is a teaching hospital just down the road from St. Jude’s Children’s Hospital also…and we were very impressed with their old facility…soon to be replaced by their brand new Children’s Hospital which they will be moving into in September.

We are also so grateful to Dr. Grekos and his staff for their responsiveness and availiability 24/7 where it concerned Mailia's well being and making themselves available to help us navigate through this.

Mailia was discharged the next day in the early afternoon and we headed west…just a few short hours into Little Rock Arkansas for the night. Max and I had been craving some southern barbeque so we opted for that. Mailia had a chicken caesar salad and Max and I paid dearly the next 24 hours for our indulging in pork and beef barbeque at a local favorite. It did not agree with us at all and were glad that Mailia is not much of a meat eater…preferring salads. Smart girl!~

We left the following morning heading north through the beautiful Ozark country of northern Arkansas and southwestern Missouri to finally land in Springfield for Mailia has been dreaming of the day she could meet up with her brother Cory Riordan, since she reminds us constantly how it has been 3 years since she has seen him.

We spent a day in Springfield and got to see Cory pitch against the Springfield Cardinals at Hammon’s Field, a baseball minor league AA affiliate of the St. Louis Cardinals. Many of you know what a huge baseball fan Mailia is…and seeing her brother Cory meant the world to her and to us…for we knew this opportunity would be “big medicine” for her.

Cory is a wonderful pitcher for the Tulsa Drillers, affiliate to the Colorado Rockies and it is our hope and that of Mailia’s…that her brother will make it to pitch for the Rockies soon. Cory and Mailia spent some wonderful quality time together…catching up and bickering and teasing each other most of the time. Her laughter was/is healing and so contagious.

Thanks to Cory, we were graciously treated to a wonderful game and several stadium employees and local fans came around to meet Mailia and Steel Dust and showered her with attention and gifts that we are so very grateful for. After her release from the hospital, Mailia was so congested from allergies and with a sinus infection going, I called her pediatrician Dr. Nazar back in the Tri-Cities and he ordered her some antibiotics to help knock it out. I hit her with everything else I had in my eastern medical arsenal and she started to feel better…much to our relief.

After hitting a local Lincare for more oxygen and saying a tearful goodbye to Cory…we returned once again into the Mailia’s Miracle mobile and headed north to Sioux Falls, S.D. after deciding not to go directly west, for California and then north the same way we came. It was our intention to head back to San Francisco on the way home to see Mailia’s heart surgeon, Dr. Michael Black, but after conversing with him…he too thought it best that we head straight home with Mailia because he suspected there would be no significant positive changes in Mailia’s pressures for a few more weeks and that an ECHO in 3 months would be much more informative.

The Midwest was so green from rain…which we hit once we arrived in South Dakota and it followed us all throughout the state until we reached Deadwood, SD for the night. We stayed at a brand new non smoking hotel and set Mailia up with her wii and games after a nice dinner. The weather was cold and wet for June…in the low 50’s and quite a shock after coming from the hot temperatures in the south. Mailia had hoped to see Mt. Rushmore but no luck, the clouds were socked in so we continued our journey and long drive making it into Missoula, MT for the night. Along with the inclement weather came the disconcerting fact that we had no cellular service or data service between AT&T and Sprint for almost 4 days so we could not call or send updates midway and along our trip home.

The next day, Tuesday June 15th…an incredible 32 days after leaving Pasco for Florida and the Dominican Republic…we finally arrived home, safe and in tack thanks to God….and everyone and everything that helped afford our initial journey in making Mailia’s Miracle a reality.

We met so many wonderful people along the way, reconnected with family and friends and made new ones. Mailia I believe…left an impression with them all and in doing so, opened so many hearts including our own…to make a difference in the world, one day and one person at a time.

Traveling across country gave us the opportunity to see first hand, the status of our great nation and the people struggling to stay afloat and start anew. It gave us such a sense of appreciation and gratitude for not only what we have, but what we are a part of. Venturing beyond our U.S. borders, to the Dominican Republic and the beautiful people there also gave us so much to be thankful for. Everyone's contribution...in Mailia's Miracle is HUGE...and will never be forgoten. This was truly humbling. We will forever carry gratitude in our hearts for everyones participation in returning the gift of life to our daughter Mailia.  Especially to you Dr. Zannos Grekos and your incredible team...thank you!

A Miracle For Mailia - Tri City Herald Article by Michelle Dupler June 7, 2010


Mailia Goforth, center, prepares to undergo an experimental stem cell procedure in the Dominican Republic. Doctors hope stem cells from her own blood will help heal high blood pressure in her lungs so she can have a life-saving heart surgery. Nurses Amie Ryan, left, and Emily Storrer, right, from RADY Children’s Hospital in San Diego, observed the procedure while volunteering in the area.
Pasco teen begins experimental stem cell treatment

By Michelle Dupler, Herald staff writer

PASCO — Once upon a time, Mailia Goforth was a young girl dreaming of a miracle that would break the curse cast over her as a child.


She waited 12 years for someone to fix her heart, which while full of love has a defect that makes her weak and steals the breath from her lungs.

Last year, a wizard entered the tale holding in his hands an almost magical treatment using her own blood, but it appeared it might take more time than Mailia had for her parents to find the money to pay.

Max and Andrea Goforth wished for a miracle for their daughter, but Mailia grew weaker and her parents grew more afraid, even though they never gave up hope.

But across the land, a fairy godmother heard of Mailia's curse and waved a wand to grant her dearest wish -- a chance at life free from the curse that has bound her.

Mailia Goforth on Wednesday became one of a handful of people in the U.S. to get an experimental stem cell treatment that could end up not only saving her life, but allow her to live the normal one she's never been able to experience.

Mailia, 16, has Eisenmenger syndrome, a condition that affects the blood flow to the heart that in her case is caused by a hole in her heart's wall.

She also suffers from secondary pulmonary hypertension, or high blood pressure in her lungs. Her blood pressure is high because the hole in her heart allows too much blood to flow from her heart to her lungs, causing her blood vessels to constrict and stiffen and strain her heart. The pressure also stops surgeons from closing the hole.

That in turn means not enough blood flows into her lungs and she becomes fatigued and short of breath.

She can't walk more than a few steps without tiring, and for seven months of the year -- when temperatures are cool -- she can't venture outdoors because of the strain on her lungs and her susceptibility to viruses.

A double-lung and heart transplant -- the customary treatment for Mailia's condition -- is not an option, as doctors have told the family Mailia would not survive.

Andrea Goforth believed she found an answer to Mailia's problem when she learned about Dr. Zannos Grekos -- Mailia's wizard.

Grekos developed an experimental technique to repair pulmonary hypertension using adult stem cells. In fact, it's so experimental it can't legally be done in the United States because it isn't approved by the Food and Drug Administration, so Grekos flies with patients to the Dominican Republic to perform the procedure.

Because it is experimental, the $64,000 cost of treatment is not covered by the family's insurance.

Blood is drawn from the patient and flown to a lab in Israel where stem cells are extracted and activated with a protein known as a growth factor to cause them to multiply.

Growth factors are produced normally in every person's blood and tell other cells to become brain tissue, heart tissue or liver tissue, Grekos told the Herald in August.

"We use ones that are specific in this instance for blood vessels," he said.

Every person also has stem cells running around in their body like miniature repairmen, and when they can be extracted, multiplied and told what to do, they can repair damaged blood vessels and even make new ones.

The stem cells are flown from Israel to the Dominican Republic, where Mailia would be waiting to have them inserted into her lungs through a small tube. The stem cells would attach to her pulmonary blood vessels and help them regenerate.

For Mailia, that would reduce her blood pressure, making it easier for her to breathe and allow surgeons to give her a pulmonary artery band, which would reduce the blood flow through the hole in her heart.

Once Max and Andrea Goforth knew they wanted Grekos to treat Mailia, they started raising money as fast as they could. They figured they'd need the $64,000 for the stem cell treatment, plus $10,000 for travel and expenses.

They also expect to need the money for a second stem cell treatment in about a year. They hope the surgery to correct Mailia's heart defect will be covered by insurance.

By the end of April, the family had raised $47,000 -- significant progress, but not enough to start Mailia's journey to the Dominican Republic.

Andrea Goforth said she's stayed in constant contact with Dr. Grekos and e-mailed him an update after their last fundraiser in April to tell him how much they'd been able to raise.

In response, she got a surprise she's describing as Mailia's miracle come to life.

Dr. Grekos' staff at his company Regenocyte wrote back to tell Mailia's parents he was willing to take $42,000 of the money they'd raised to perform Mailia's stem cell procedure, and that a nonprofit called the Alliance for Adult Stem Cell Research and Therapy -- Mailia's fairy godmother -- was going to pay the rest.

After they got the news, Max and Andrea Goforth each scheduled a month off from their jobs, got the family's SUV in shape for the more than 4,000-mile, nine-day drive, and set off on a cross-country adventure.

They arrived in Florida about a week ago, where Mailia underwent preliminary tests and her blood was drawn and whisked away to Israel to make stem cells.

She flew to the Dominican Republic a week ago, and on Wednesday had nearly 58 million stem cells pumped into the arteries in her lungs through a catheter.

Within days, she'll be on her way back home.

"This is an adventure," Andrea Goforth said by telephone from Florida. "This is a first for us, as it is for many. I hope Mailia will be able to come back and tell a very positive story about her journey for others."

Grekos has said if the stem cell therapy is successful, Mailia's pulmonary hypertension could be reduced enough that she could have a relatively normal life without an oxygen tank and perhaps even be able to play sports.

Mailia has dreams both simple and lofty -- she'd like to go to the mall like other teenagers and be able to swim like her idol, Michael Phelps. She also envisions one day running her own animal sanctuary in Costa Rica where she'd preserve endangered species.

Right now, Andrea Goforth is focusing her prayers on a successful stem cell procedure that will allow Mailia's heart repair within a matter of months.

But she's also worried about how the family will pay for additional procedures with just $33 left in the Mailia's Miracle fundraising account after the costs of the procedure and trip.

The family plans additional fundraisers when they return home, and has set up a website called mailiasmiracle.com that tells Mailia's story and gives information on how people can donate.

Thursday, June 3, 2010

57,800,000 Adult STEM CELLS - for Mailia's Miracle

We are exhausted but exhilarated and relieved.  Our prayers, your prayers I believe have been answered!  We arrived in Santo Domingo in the Dominican Republic after leaving Bonita Springs Florida on my birthday, Sunday May 30th to stay in Miami in order to fly Mailia to the DR.
We were very nervous how she would do flying...but to our relief, 20 minutes after we pre boarded our flight, to our utter astonishment and amazement, we met both Dr. Zannos Grekos and Greg Finely from Regenocyte as they walked down the aisle to their seats.  Mailia... bounced up and down in her chair in total relief...knowing that Dr. Grekos was right with her!  The anxiety and extra stress she had about flying all but disappeared.  They said they wanted to surprise Mailia...and surprise her they did!

Our flight required Mailia to be on oxygen...a lot of oxygen and she went through two large tanks in the two hour flight.  We had expected our Regenocyte liaison, a beautiful woman by the name of Yanely Acosta to meet us at the gate with additional oxygen...but to our dismay, she was not allowed into the boarding area and it was too late to go back to the plane for the other full tank of oxygen.  Dr. Grekos grabbed Mailia's O2 tank as I wheeled her down the corridors through customs when we she said..."Mom, I am out of oxygen now".  Zannos and I took off like a shot to get her to where Yanely was waiting for us...totally in a panic that we rushed her through customs or I should say...the Department of Agriculture's officials who were demanding documentation on Mailia's little service dog "SteelDust".  I told them in my most eloquent Spanish that we could not stop for this, Mailia needed oxygen and I would pay the consequences later.

We got Mailia to the front of the Airport, got her hooked up to her oxygen and made sure she was okay and while she stayed with Dr. Grekos and Yanely, Max and Greg went to fetch our luggage and Olando (translator and porter) and I went to make amends and pay restitution to the animal federales.  The head of the department of Agriculture was a sweet woman named Margarita who not only was understanding with our plight but also instrumental for offering up some extra prayer support for Mailia's procedure.  I know...playing the Mailia card had it's merits.

We then loaded ourselves into Yanaly's SUV and she proceeded to take us to our hotel.  Thank goodness Max was riding up front with Yanaly...as Mailia and I did not need to see the unbelievable way people drive and get around, here in the Dominican Republic.  We were amazed at how folks could drive as recklessly as they do and not wind up in a serious or even minor car accident.  Yanaly, was no exception.  She told us there are 6 different horn beeps that each have their own meaning.  She mostly used the toot toot...I am coming, or toot...thank you....or beeeeeeep, get out of the way!



Our journey to the hotel was nothing short of miraculous as well.  We were personally greeted by the hotel manager Mario Mendez and assistant manager Lenin Casanova and most of their staff, who had been expecting Mailia's arrival.  It is the off season now...and we were graciously received and accomodated into a nice room and upgraded for free to an executive suite facing the ocean.  Mailia, Max and I had a nice dinner at the hotel and a restful evening.



The next day Wednesday, was a day which brought a huge surprise as a friend of Mailia's came with her traveling companion all the way from Pennsylvania to be with her for her stem cell procedure.  Janette and Jaunita arrived at our hotel while Mailia and I were having breakfast and Max was taking Steel for his morning relief.  The potty reflief jaunt involved Max running, no sprinting across a four lane (very busy) street in front of our hotel to the beach area...without getting hit.  Pedestrian crosswalks...they crack me up here because they are never used...or can't be used safely.


Shortly thereafter, we met Yanely at our hotel and were so happy that she had picked up our dear friend Nahla Abbo, Cal's mom.



Nahla had flown in the night before and was staying at the same hotel as Janette and Jaunita at the Intercontinental.  We all piled into Yanely's vehicle...including Mailia's oxygen and wheelchair and we headed for a nice ride through the colonial part of town where we stopped to see the oldest Catholic church on this continent. 



We got Mailia into her wheel chair and proceeded to the church where a man by the name of "Angel" approached us and offered to give us the grand tour.  He was a nice man, very humble and humourous.  He spoke to Mailia and asked why she was sick.  We told him she had come for a very special procedure for stem cells for her lungs and heart.  He right away...told us that he had also experienced talking to and praying for a woman two years ago...who came to the Dominican Republic for stem cell therapy.  That...was Barbara McKean who he said could barely walk and was so sick with COPD and pulmonary hypertension.  He prayed for her...and now, he said...she writes to him from time to time to let him know how well she progressed after stem cell therapy.



Angel offered to pray for Mailia.  Max and I took Mailia into a small chapel within the church...and we prayed.  We see Mailia getting well, happier than ever...her miracle before her.  We all left there...pretty exhilarated and optimistic everything was in God's hands now.  No turning back.

That evening, we all got together for a special dinner to celebrate the eve of Mailia's stem cell procedure and to see her relinguish the anxiety and worry she has been carrying now for so long. Nahla brought a beautiful letter from Cal for Mailia, and also a beautiful pendant from her gorgeous and sweet daughter Justine.  Cal's letter helped Mailia and we want him to know it really made a difference for Mailia...knowing that Cal has helped her by pioneering the way for she and others.  Cal still has to climb that mountain to get to his final destination...and he will do so with great courage and love from an incredible support system.



The next morning, June 3rd will be a day that Max and I will never forget.  It was to become the clincher for Mailia's Miracle.  Mailia was not to have any food after 9:30 a.m. so we went up to the 20th floor of our hotel for a quick breakfast before being picked up by Yanely to take us to the hospital Centro Cardiovascular Dominicano.  When we got there...Mailia's service dog SteelDust became the target of descrimination...as animals, no matter the connection or service, they are not allowed on any premise in this country.  We spoke with the doctors and he was allowed minimal access...so he was temporarily stripped of his duties and found loving and caring arms in those of Mailia's dear friend and animal vet tech, Janette and her friend Jaunita who stayed and took care of him while we admited Mailia for her procedure.



Mailia was taken to a room where she and another couple from Florida were waiting to go first, for their stem cells.  The reports came in...Zannos told the other patient that he had over 62 Million stem cells and that Mailia would get an astounding 57.8 Million!  As we got Mailia settled in and changed into a lovely gown, an x-ray technician came in to get a chest x-ray for the doctors.  Later...one by one...the cardiologists started to arrive and come in.

We met with Regenocyte's Dr. Lionel Fco. Liriano or (Chiqui) as he is fondly called, the one who would orchestrate all the work in the control room.  Then Dr. Roberto Fernandez de Castro and lead Dr. Hector Rosario Figueroa came in to meet us and Mailia.  They had just drove in from another main city from the north, Santiago and were going to get ready to study their patients records and consult with Dr. Zannos Grekos.



Mailia was also visited by two traveling pediatric nurses from San Diego, Ca. Amy and Emily who were on R&R in Santo Domingo after having traveled from Haiti for a 2 week relief effort.  They had met Dr. Grekos and Greg at the hotel and were given the opportunity to come bear witness to his procedure he has spent years developing and perfecting and asked if we were okay if they could observe.  We were very happy to have them...as I quickly put them to work helping me get Mailia prepped and hooked up to all their monitors.

Then Max and I quickly went into change into our scrubs for Max was allowed to be in the control room with Dr. Chiqui, Amy, Emily and Greg Finley as well, who was video taping and documenting Mailia's procedure and Max, too...taking pictures that you are now previewing.








I was afforded the best seat in the house.  At my babies head...right at her side to hold her hand and relax her to the point where she did not require any anesthesia.  Dr. Grekos felt it was better to forgo the anesthesia for he feared it would raise her heart rate and cause her more left to right shunting thereby increasing the pressures in her lungs.  No, only a local anesthetic was to be used where they would be inserting the cath into her groin and femoral artery.



Mailia was explained the procedure by Zannos and Vicente...her anesthesiologist whoes cell phone drove me nuts at times.  The pictures shown here are of Dr. Fernandez and Dr. Rosario who were the ones running the whole show with Grekos all around the lab making sure everything was coreaographed perfectly despite the pandemonium going on.






Mailia's blood draw produced over 57.8 million adult stem cells which had arrived only hours before.  Paperwork was verified, control and batch numbers matched to her wrist band...all in order. I watched Mailia's heart vitals constantly...while stroking her forehead, wanding and calming her, putting her into a total state of relaxation.  There were three separate times where she went into a deep meditative state that made me nervous and later relieved to see this was her way, of allowing the invasiveness not to overpower her.  She remained connected and strong...amazingly strong!



The procedure took a cool two hours and they managed to get all the stem cells, which were in 3 separate syringes into all 6 of her main lung artery branches in both lungs, and before removing the cath Dr. Grekos had Dr. Rosario place the last cc of stem cells in her pulmonary artery...just for good measure.  We were so impressed with this teams profesionalism, their internal Q.A. and expertese while working to help our Mailia.

She was done!

After a restful night recouperating in the hospital and being monitored, we were escorted back to our hotel this morning by Yanely.  The staff at the hospital was courteous, helpful and very gracious to us and we thank them and everyone here in Santo Domingo for their hospitality and willingness to help and care for Mailia.

It has been a truly humbling experience for all of us...as it should be.

Thursday, May 27, 2010

Mailia's Blood Draw a Success at Regenocyte



Mailia's Stem Cells - The Ultimate Gift
Tuesday morning, we were greeted at Regenocyte by Nancy Trombino and Roxanne Pleva who are patient coordinator's at Regenocyte.  Everyone was so thrilled to finally meet Mailia...a young patient who has traveled so far in hopes of reaching her dream of a miraculous healing.

Mailia was very nervous about the procedure and Dr. Grekos and his incredible team of nurses, Michelene and Felicia, were able to talk to Mailia and give her the necessary dialog on what they would be doing, step by step...in order to draw her blood successfully with minimal stress to her body and psyche.

In speaking with Dr. Grekos about our concerns relating to Mailia's previous blood draws via her arm's and how difficult she is to do in this manner, I asked if he would consider doing her blood draw through a femoral pic line through her groin instead.  He agreed to do this validating that it is the parents that know their kids specifics and he is all about listening and taking these things into account.  Boy...big relief!

They preped Mailia in their catherization lab and lightly sedated her while monitoring her heart rate, blood pressure and oxygen saturations.  Once she settled down...they inserted the line and were able to draw around 30% more blood which for Mailia...means more stem cells we hope.

 

After Mailia's blood draw, we took her for a good meal to replenish her strength and gave her alot of fluids and supplements to replenish her blood.  She did well, and expressed excitement about finally getting her stem cells.  We also had a wonderful interview with Tri City Herald reporter Michelle Dupler who is doing a follow up article on Mailia's Miracle and her journey now to Florida and the Dominican Republic for stem cell therapy.

Today...we needed to replenish her oxygen once again, so headed to LinCare to exchange 20 empty E tanks for 20 full ones which should last her through the weekend, for we will be planning to check out of our hotel here in Bonita Springs, and head in to Miami this coming Suday.  Our flight to Santo Domingo in the Dominican Republic will be Monday May 31st...for her scheduled procedure on June 2nd.

We also spent some time this afternoon at the Regenocyte clinic meeting with Dr. Grekos and discussing Mailia's procedure and the options and opportunities this would present for her.  We also had the chance to meet Howard Linderman, a Regenocyte patient who underwent stem cell therapy two years ago.  To hear his story is one of true inspiration and can be seen by clicking the Regenocyte link.  He offered Mailia so much hope and motivated her to stay positive and believe in herself...and her doctors.  She is now...part of their exclusive club!  He offered to teach Mailia how to scuba dive at some point...she told him she already was an accomplished diver...in her Wii game "Endless Ocean". 


                  Howard Linderman and Mailia

During our visit with Dr. Grekos and Howard, we also were visited by WINK CBS tv reporter Carlos Suarez who I had contacted to see if their station would be interested in doing a story on Mailia's Miracle and Regenocyte.  More on this...shortly.

Sunday, May 23, 2010

We Made It Today...Sunny Bonita Springs Florida!



Regenocyte Clinic-Bonita Springs, Florida
May 23, 2010

Greetings everyone...First off...I have to give my love and gratitude to one incredible man and dad, Max drove like a mad man to get his baby safely to Florida for her blood draw, and with a day to spare!  He drove the entire 3,900 miles...oops, make that a cool 4,400 miles for the backtracking we had to do in Texas.  Yep...he is a keeper in my book.

Mailia made the trip well...she ate, rested, watched movies, played on the computer, played games, wrote in her journal, talked to friends and family...and all her fur kids while in the comfort of her Mailia's Mobile.

After leaving Casa Grande...in our last post, we wound up spending the night in Benson, AZ. at a nice motel there.  The following morning we headed out with the intention of making it in to Ozona, Tx.  When we crossed into Texas...after getting through the heavy traffic in El Paso, we went through another time change and also saw the speed limit increased to 80 mph!  Sort of made up for the lost hour...you would think.

We got into Ozona, Tx. about 11:00 p.m. last Wednesday evening...very tired and ready to rest.  Normally, I would not wait until we just showed up at a motel...I would wait until 3 p.m. to guestimate our ETA at our resting stop for the night and call ahead for a reservation.  That said...we were out the door pretty early, headed east and having breakfast at a Crackerbarrel when I get a call from the hotel we had just stayed at telling me the office clerk forgot to give me back my credit card...so 5 hours and 400 miles later...here we go, back to fetch it.  Poor Mailia...we arrived in Texas...with the sun setting on our butts, we barely got to Houston that evening...with the sun still setting on our butts!  I started to have reservations about ever making it out of that state...but we did.

We needed to refill Mailia's oxygen tanks again...so we called ahead and found a Lincare in Lake Charles, LA and the folks there were so helpful and wonderful....even holding their doors open at closing time to accomodate us finding them...everything falling into place as planned.  I often wondered about the events of this trip...and how things unfolded after our little snafu in Ozona...and realize now...it was all perfect.

Lafayette, Louisiana was our resting spot the following Friday evening and oh my gosh...how these folks like to drive FAST!  Rajun Cajuns for sure!  The brakes don't work too good on the passenger side of our rig though.  We made it a point to take Mailia in to Prejean's for dinner, a local favorite.  She ate a wonderful shrimp gumbo and had another shrimp feast similar to the one in S.F.  She could not believe the live cajun music the restaurant offered and the photo op with a nice large stuffed gator was hard to resist. 


After leaving Lafayette, we really made progress getting through and to...4 states.  The rest of Louisiana, a little bit of Mississippi and Alabama, then ending up in Tallahassee Florida this past Saturday night.  We stayed at a hotel way off the interstate that was so green and beautiful but oh...the heat and humidity has been something else. We ordered a Pizza and wings for dinner and dined in our room, so thrilled we had gotten so far.  The Mailia's Mobile...my trusty Excursion...just turned 100,000 miles and I am so grateful Mailia has had this charriot at her beckon call all these years...and I pray, it will continue to take care of her and meet all her needs.

All along our trip, folks have been friendly, kind and compasionate.  It has given us a glimpse into what so many have and are enduring with our coutries challenges...it is humbling and consider ourselves so very blessed and grateful for what we have.

Arriving her today...was so emotional and words cannot explain really...the gratitude and happiness we are experiencing right now, in hopes that Mailia will soon...have her miracle.

After dinner, we ventured over to the Regenocyte clinic to one, locate it and two...to take some photos, being Sunday...not being an intrusion on anyone.  It was glorious!  Then we drove 3 miles from the clinic and found a beautiful beach here in Bonita Springs.  We allowed Mailia to walk onto the sand...to the waters edge and feel the southern gulf...on her feet.  She was in heaven! 

So we are here for a while...we will meet Dr. Grekos and his team this Tuesday for Mailia's blood draw and we ask that you keep her in your thoughts and prayers...that it will all go well.  We will then try to work on the rest of the logistics of getting her to Santo Domingo in the Dominican Republic, so will know more later this week and will share this...shortly.


I leave you all with this photo of Mailia...as the sun sets this evening here in Florida, she is at a place in her life where she is confident and strong...scared and concerned, yes...but ultimately she knows in her heart she is loved so very much and that life has so much to offer her.  Thank you eveyone...we love you all very much!

Good night...