Dr. Zannos Grekos & Regenocyte Clear Mailia for Second Adult Stem Cell Transplant

                              Mailia at Regenocyte May 2010

Today...the 10th of October, we set out to see Mailia's Dr. Nazar, her wonderful GP who has followed her care for the past 10 years now.  We were instructed by the folks at Regenocyte that Mailia needed to have some pre op blood work done prior to our trip to Florida and the D.R. so off to Dr. Nazar she goes, straight in to the phelbotomists lab this morning to do, exactly that. Oops, did I spill the beans or fail to mention that YES!...Mailia has a date with her hero, her favorite Cardiologist and Stem Cell doc and his wonderful staff in Florida THIS MONTH!!!!

One evening last month...we recieved a phone call from Dr. Zannos Grekos telling us it was time that Mailia be treated with another round of stem cells and that we should start planning this as soon as possible.  Nancy Trombino, who is Regenocyte's Director of Patient Services, arranged Mailia's procedures to coincide with the following dates:

Oct. 24th...Blood Draw at Regenocyte in Bonita Springs, Florida
and
Nov. 1st...Adult Stem Cell Transplant at Regenocyte in Santo Domingo, Dominican Republic

One thing Dr. Grekos mentioned to us is that this next procedure being done on Mailia would go a little differently.  It was his hope...that Mailia's next blood draw would be able to produce a more viable amount of stem cells, meaning instead of the 58,000 million stem cells delivered during her procedure in 2010, this year he wanted to see closer to 100,000 million stem cells produced from the lab in TelAviv Israel....almost double the amount of heart and lung adult stem cells!

It was also his wish to see the second half of the procedure, go a little differently than the last one.  Dr. Grekos wants to use a balloon catheter to hold the stem cells in place, long enough for them to actually "stick" and adhere well to the delicate walls of Mailia's lung vasculature.  The benefits of being able to do this now...this time around far out weigh the risks involved last time, for you see...Mailia's lung pressures were so very high last year and she was so very fragile, there was no way to do this then, for they would have lost her on the table. 

Now...Dr. Grekos believes with her 30% improvement from last year...she should be able to handle this well and come away with some huge gains...or let me rephrase that...better numbers where it concerns her pulmonary vascular resistance. 

He did, however...ask that we consider doing something before hand...to better prepare Mailia for another successful outcome.  I asked what that was...and to my amazement, he said the following:  I have a patient who is paraplegic from a spinal cord injury that I am treating with his Adult Stem Cells.  The patients mother and father are physical therapists and I would like for you to contact them and discuss what they are doing for their son.  The name of their organization is the Power of Breath dot org.  You can google it if you like and go from there but I really do think it would improve Mailia's overall results.

I thanked Dr. Grekos profusely and came away from this phone conversation so elated and happy for our precious Mailia and GRATEFUL...oh how thankful we are to everyone who has helped us and are continuing to help in so many ways.

My last day of work due to completing our proposal and my contract...at my present job would be September 30th, which is something I have no control over but see it as...perfect timing so as to give us 3 weeks to get Mailia ready for this huge trip. We are still short on our funding for Mailia's procedures...no matter, we will figure it out...and TRUST and have FAITH in God and the universe, it will all work out, and we will continue steadfast to work as a team to get Mailia her Miracle. We HAVE to! So please everyone...we humbly ask...once more for your prayers and any contributions or creative resources on your part to make this Miracle happen for Mailia.

Thank you...all our love and gratitude now, and always.

The Goforth's

Mailia Meets Bret Michaels and dreams of being part of the "Something To Believe In" charity reality show.

                       Mailia & Bret Michaels Aug. 24, 2011

Well wouldn't you know it.  After teasing Mailia's dad Max about what an absurd idea it would be to ever wish let alone believe that a meeting between that infamous rock star from the Poison days, Bret Michaels, would ever materialize...I am here to tell you it was WORTH...believing in.

I will always remember Max coming in to tell me...this, is who you need to get a hold of to help Mailia...as he hands me a piece of paper with Bret Michaels name written on it.  Who is Bret Michaels?...I asked...as Max just rolled his eyes, knowing I never cared nor listened to his music (sorry BM fans...but that is a fact).

Max told me he had just won the Celebrity Apprentice show (another one I did not watch obviously)...as most of my spare time is glued to the computer and internet looking for therapies and treatments for Eisenmenger's and pulmonary hypertension i.e. Adult Stem Cell Therapy and at time, we were so wrapped up with Mailia's first stem cell treatment and trip and raising the necessary funds to facilitate it all.

No...I thought to myself...well, if he is who you know him to be...then try to contact him Max.

Not...at least for the time being.

Spring ahead to March 2011 while perusing through our local news paper, the Tri-City Herald I happened to see who the concert line up is for our local small town/city Benton Franklin county Fair and Rodeo...and when I saw that Bret Michaels was included...my jaw hit the floor!

It's a sign...it's a sign!  I remember orating to myself and Mailia...and quickly contacted Max to let him know.  Max spent the next several months trying to figure out an opportunity where Mailia could actually meet Bret Michaels.  He wrote letters to the BM fan club, to his publicists and road Manager, who we heard...had graduated from Kennewick high school.

But during this time, we also found out that Bret had been diagnosed with a hole in his heart, a PFO or patent foramen ovale that was a possible cause of stokes he had experienced early on.  Unlike Mailia's heart defect or hole in her heart (VSD), doctor's were able to repair Bret's heart defect with a right heart cath and PFO closure device.

A true Miracle...and now with this added caveat and circumstance that hit sooo close to home, we knew in our hearts that Bret and Mialia...were destined to meet and connect in some meaningful and heartfelt way.

The day of the fair and concert came, August 24th 2011 and Max took the day off work...and left the house early to find a way so Mailia could meet Bret Michaels.  He spent the entire hot and sweltering day combing through the entire fairgrounds...a paparazzi troll if you will, asking and inquiring until he landed at the Bret Michaels concert booth. After talking to several of the Bret Michaels staff setting up for the pending concert, and a 1-1/2 hour waiting period, Max was finally told that Mailia could have a meet and greet with Bret prior to the concert. Max immediately called home to tell us that his baby girl was going to get her wish.

I loaded up Mailia and her little service dog SteelDust and we headed for the fair late that afternoon and found her dad harboring a wrist band for her.  Came time for the meet and greet, Mailia and Max were whisked back stage behind so much security and secrecy where Mailia got to say hello to Bret, shake his hand and have her picture taken with him.  His band members and staff were all over little SteelDust...and Max, so humbled and grateful to them all...handed Bret an envelope with a letter he had written with one of Mailia's cards that said the following:

Dear Mr. Michaels,

Let me begin by saying congratulations on your successful heart surgery and for remaining to be a positive role model in lieu of your other recent health challenges. I have been a fan of your music since the Poisonous 80’s. Having recently watched you on Celebrity Apprentice, Barrett Jackson, and other media outlets, I have gained a tremendous amount of respect for you as an individual, entrepreneur, philanthropist, and most importantly a DAD. The way that you responded to the news of your daughter’s diagnosis of  Juvenile Diabetes, on Celebrity Apprentice, was very commendable. Like they say “Any man can be a father but it takes a special man to be a DAD”.

 My name is Max Goforth and I live on a small farm in Pasco, Washington with my wife Andrea and daughter Mailia. My wife and I work full time day jobs and we also breed horses and dogs in our spare time. Our 17 year old daughter Mailia , like you, was also born with a hole in her heart that went undiagnosed until she was 3 ½ years of age. Mailia developed secondary pulmonary hypertension due to the large hole in her heart, or Eisenmenger’s Syndrome, and has required supplemental oxygen 24/7 for the past 14 years. Until recently Mailia’s prognosis was not good, as the traditional treatment protocols have had no noticeable benefit and Mailia’s pulmonary pressures are too high to safely close the hole.

Mailia is a beautiful 17 year old with a strong desire to live life to its fullest. She amazes her mother and I everyday with her positive outlook and we are extremely blessed to be her parents. We made a trip last summer to Florida and then to the Dominican Republic where Mailia underwent a controversial Adult Stem Cell Transplant that has shown very positive results. This technology is currently the only viable option that Mailia and some other Eisenmenger’s patients have to live long and prosperous lives. We are in the process of planning another similar trip in the near future to allow Mailia to have a second stem cell procedure. You can view Mailia’s story and the chronicles of our whirlwind trip at www.MailiasMiracle.com.

When I heard about your own heart condition and successful surgery, I told my wife, it sure would be cool if Mailia had the chance to meet Bret Michaels someday. Just two unique individuals bound by a common challenge.
As fate would have it, I see based on your current concert schedule that you will be performing live at the Benton/Franklin County Fair on August 24, 2011. This happens to be the County Fair for the area of Southeastern Washington where we live. We would consider it an honor and a pleasure if you could spare a few moments of your time while you are here in Kennewick, Washington to meet with us and Mailia. You would make the proud parents of an amazing 17 year old very happy.

Respectfully,
Max Goforth

The meeting that coincided with Bret's concert was amazing.  Hearing his song, Something To Believe In was heartfelt.  The next day...while googling the lyrics to the song, I found out that Bret is working on another reality show with Donald Trump called non other than "Something To Believe In"...a show based on "Charity" and Bret's intention of traveling the country helping those in need of a miracle.

Well...if FAITH and TRUST have anything to do with it...and taking Bret's last sentence or words said to Max and Mailia (to heart)..."I will talk to you later"...I think, Mailia has a very good chance indeed, of being a part of Bret Michaels circle...once again.  And who knows, maybe a special "angel" will intercede and open a wonderful door so this will come to pass. 

Please everyone...keep Mailia in your on going prayers that she will be healed and have her miracle.  Thank you Max...you are an awesome dad and husband.  We will never forget this sweetie...you are the best and YOU ROCK too!~

                         Mailia, Max and Bret Michaels....

Mailia's Miracle 2nd Annual Night of Hope Fundraiser a Huge Success for her 2nd Round of Adult Stem Cells

Jesica Dawsey & Mailia with proceeds from her 2nd Annual Night of Hope Benefit Fundraiser

Oh dear, I'm Late...I'm Late for a very important date! No time to say "hello", "good-bye" I'm Late, I'm Late I'm Late! I feel like the rabbit in Alice in Wonderland...been down in a deep rabbit hole for the past 4 months so will try as best I can to explain and say...oh how I have missed blogging about Mailia!


I wish to start out this update explaining that the reason I have been out of pocket for these past several months is that right after Mailia's benefit fundraiser in April, I was unexpectedly laid off from my job but fortunately was able to connect with a new company that needed help with a short term project, so hence...have been busy working non stop and spending what quality time I can, with Mailia and championing her cause on every front we can.

Our priority right after Mailia's event, was to send out personal "Thank You" cards and letters to everyone who donated their time and resources to make Mailia's Miracle 2nd Annual Night of Hope a huge success, but now, also wish to share our letter of gratitude within Mailia's blog:

Max, Mailia and I wish to recognize and thank everyone for coming out to Mailia's Miracle "2nd Annual Night of Hope" benefit fundraiser and to also thank Jesica Dawsey and all the volunteers, businesses and generous donors who contributed to this event and the live and silent auction. We were blessed with raising over $14,041.00 this year for Mailia's next scheduled therapy of Adult Stem Cells which now brings her benefit fund balance to over $20,000.00!~

We wish to convey, that this event was not all about Mailia…but about the sense of generosity, compassion and love that a very special young lady can inspire. By having been a part of Mailia’s event, you will be blessed with the knowledge that you have made Mailia…so very happy and that you are a part of an ongoing miracle to see her and others healed from Eisenmenger’s Syndrome.
At her event and a year after her first round of stem cells, folks commented how well Mailia is doing and looking compared to the same time last year. To see her smile, to see her so very happy and full of energy...we can only hope you know how much your support means to us and acknowledge she is where she is today because of your help. We humbly…Thank you!

We know while Mailia’s personal courage and strength have played a significant part in this ongoing miracle, it is the prayers, encouragement and ongoing support of many folks who have made this possible.

This event...was no exception.

We owe so much gratitude to Jesica Dawsey for once again, taking time out of her busy life and committing herself to helping Mailia. Jesica’s action sends a message to everyone that taking time for others, and giving from the heart is what truly makes a difference in one’s life…and the lives of others.

With experience in the fundraising arena…Jesica not once, but twice…took the bull by the horns and started down the path to pull together, an incredible team of volunteers and angels. She solicited help from friends Tassie Alderliesten and Tammi Bitton, Alison Graff, Sarah Clouse & Haylee Bitton.

Jesica and her angels asked for donations from individuals and businesses. She brain stormed on a daily basis…some nights, losing sleep worrying about the fundraiser. But she persevered and came through with a beautiful and successful event once again. We are proud and commend her highly on her integrity, hard work and dedication...she is a true inspiration that anyone can do great things...if they set their minds and heart to it. Thank you Jesica...we love you and Kolin dearly and will always remember your incredible gift of friendship, love and support for Mailia…this we will always treasure!

Chuck Hall was an integral part in helping us get the word out about Mailia’s Miracle in the community with public service announcements. To be the Emcee and helping out at this year’s event…and all the advertising through his radio station 102.5 KORD...we wish to recognize and thank him so very much, for supporting Mailia and affording her future opportunities to come out to the station to “hang out” with him.

To the owners and incredible staff from Eagle Printing & Graphic Design, we owe them so much for their help and services. Chris Steel has been around this fundraising block…more times than I can count. But they too…have played such an instrumental part in helping Mailia’s Miracle touch the world. Chris is a wonderful and neat lady…she has a knack of knowing what to say to make your day a whole lot brighter. Her laugh is contagious…her light…is one of the brightest we have seen! Thank you...so very much!

Web Master extraordinaire…Thomas Granbois…a dear soul who has built Mailia’s Miracle web site and blog…and assisted us from a technical standpoint…to you, we thank you too...you are our angel! Mailia’s web site has been an important conduit to sharing information about Mailia’s condition, her incredible therapies and outcomes with thousands of other people around the world looking for help and answers…and will continue to afford us a means to reach out for help for Mailia…and others.

Mailia’s caregiver Ramona Torres…you know how much we love and value you and your wonderful family. Your taking Mailia’s care so personally…and to heart…treating her as one of your own, means the world to us too. We hope you will always know…how much you truly mean to us and how grateful we are for being a part of Mailia’s life.

To Lance Sawyer, the staff of O’Callahan’s and the Shilo Inn…Delbert Olson and staff of RDO Equipment, Kennewick Ranch and Home, D.J. Bob from Sight & Sound Services, Auctioneer Doug Swenson, The Entertainer Newspaper and KNDU, Randy Hickman and his counterparts at Twin City Metals, Jeff & Jill Rottinghaus, Austin Bitton, MaryLee & Charles Dawsey, June Robinson, and to everyone else who contributed wonderful auction items, helped organize and worked so very hard at this event, our friends, our incredible co-workers and our family that made time and sacrifices to come help and support Mailia…we thank you and appreciate you so very much!

In summarizing…Mailia’s spirit reflects she has so much more…to offer this world. As her parents we have a huge responsibility to her…to see to it that she has the best medical and spiritual assistance to make this life, a reality for her. We don’t have a choice…that is what we are supposed to do. And because of the generosity and support we have from all of you, it will help make it all possible.

We wish for all of you to cherish your loved ones and friends like there was no tomorrow and to live your lives to the fullest by continuing to help one another, and to be true to yourselves. We will post photos of the event up on Mailia's Miracle Facebook page here shortly.


We love you and humbly thank you. May God Bless you richly.


Max, Andrea and Mailía Goforth
www.MailiasMiracle.com

March 9, 2011 Mailia's Miracle is Celebrating Her Birthday & Blessings Today

It has been a very busy and challenging time for us and Mailia since our last blog post...we have spent the last 4 weeks getting Mailia over another bout of crud she picked up with more visits to her doctors and antibiotics.  This time...we are grateful her cough was not intense and she was successful at keeping the bleeds to her lungs at bay.  She is almost 100%...back to her old self and enjoying the fruits of her daily creations.

Mailia...as some of you know, has been raising some puppies to sell to help us generate funds for her upcoming stem cell therapy and heart surgeries. She is now affiliated with a non profit group, The Alliance for the Advancement of Adult Stem Cell Therapy and Research.  It is Mailia's hope that with the help of her supporters and her "miracle"....she will be able to help so many others through sharing her story and journey, by giving of her time and resources to help raise awareness and funds for others like her.

Mailia was approached and asked if she would consider donating one of her puppies, a beautiful Toy Australian Shepherd named Li'l Dottie....to a benefit fundraiser for our local "Pink Night to Remember" Making Strides for Breast Cancer event last Friday.  The event, was organized by a wonderful group of women who helped us with Mailia's Miracle Night of Hope fundraiser last year. 

The event was a huge success bringing in over $31,000 dollars but the best part of all was the generosity of folks shown to Mailia's and her gift of her little fur baby.  Mailia and Dottie's contribution brought them $2,100.00 that night...but more importantly, it brought a wonderful loving home for Mailia's special little girl and gift.  Breast cancer survivor Paula Boone, a registered nurse from Parker, Colorado won the opportunity to claim Li'l Dottie and take her home to Colorado to her forever loving home.

An emotional and heartfelt evening...or actually day, for earlier that morning...we were once again blessed with the opportunity to tell Mailia's story on our local NBC news station KNDU.  Reporter Chris Holmstrum came out to the house to visit Mailia and do a follow up story about her stem cell therapy last year, and to also share where she is at today...and future therapies to come.



Chris interviewed Mailia and asked how she now feels after her initial adult stem cell procedure last summer. She told Chris that after about a month from having her stem cell procedure, she had in fact felt so much more energy and was able to do so much more physically without her lungs and heart becoming overloaded from all the extra exertion and activities she was now able to do.

Chris was also able to speak over the phone with Dr. Zannos Grekos from Regenocyte to get his perspective of Mailia's initial procedure and his recommendations for another round of stem cells, the next...we are praying will come about in the very near future.  Chris also helped us convey the need to help us raise funds for Mailia's next treatments through a benefit fundraiser event scheduled for April 22nd 2011 and how folks could learn about Mailia through her web site and blog.

We wish to thank Chris Holmstrom and the producers and staff of KNDU for their wonderful follow-up story for Mailia's Miracle...we are truly grateful!  Thank you!

While driving to work last week, I was pondering my thoughts about Mailia and her life up until now, and what a miracle and blessing it has been.  Not a day goes by, that we do not give thanks to God for blessing us with such a beautiful child.

I'll bet...my own mother felt the same way about me...when I was born.  You see...I was not supposed to even be here.  I am alive today...because of the love and generosity of one great man who I owe my life to.

Before I was born, my mother and father lost 3 sons at birth that were "blue babies". My mother Josefina worked for a great man by the name of Herbert Fleischhacker, businessman/banker and philanthropist from San Francisco.  He adored my mom...and during her pregnancy with me, made sure that she would have the best in medical care that could be afforded at that time (1957).  Sadly, Mr. Fleischhacker died in April of that year and I was born the following month in May.  A Blue Baby! 

True to his word, I was delivered at Mt. Zion Hospital in San Francisco and transfused with my mother's blood right away...saving my life.  As I was driving to work, I remember these stories told to me by my mother and I gleaned the true meaning of love and faith and how truly grateful I am...to my parents and Mr. Fleischhacker.  Mr. Fleischhacker, if you are in heaven and looking down on us, you must know what goodness has...and will come to pass from your life's work and contributions.

And so now...here go we.  Our beautiful daughter...whose life we are trying to save with the help, support and prayers of so many.

I peeked in on Mailia this morning...gratitude and love pouring from my heart for giving us another year with her.  Happy Birthday sweetheart!  Today marks your 17th year and we get to celebrate it with you today.  We love you so very much and thank you...for choosing us as your parents and guardians in this life.

Let's get the party STARTED!!!!

Mailia's Miracle Finds New Eisemenger's Syndrome Patient in Mumbai, India

Taj-Mahal Photo for Mailia from Hari

2011 found us bringing in the New Year with a beautiful email and greeting from a young man we have fondly come to know as "Hari" who is also Eisenmenger's Syndrome like Mailia, but a world away living in Mumbai India...and with his permission granted...we wish to share his first email to us, with you:

Hi Mailia and her wonderful parents,

My name is Harikrishnan K R. I am 28 years old and am a VSD - Eisenmenger's Syndrome patient. I was diagnosed with VSD at the age of 6 which was obviously beyond surgical stage. Doctor's suggested my parents that there is a chance for the defect (ie, the hole) to close by itself as age goes by. The medical follow up facilities in the country where I live (Kerala, India) was very minimal during my childhood and my family believed the doctor's word of a self future cure. I never had critical issues with my illness apart from panting when I run or walk through slopes and a blueish tinge on my finger nails and lips. I had myself involved in all sort of sports and games despite my physical limitations due to my illness. I had only 2-3 medical follow ups done in my life and I was 27 years old when I felt the first gear change of my illness.

I started coughing up blood due to the high pressure on my lungs. It happened in Feb-March 2010. Ever since then I am in regular medical follow up and now I live in Mumbai, India. I am seeing Dr. James Thomas a famous thoracic surgeon in India. He suggests a heart-lung transplant for me. My condition is getting worse for the past 2 months. I gave up my IT job and started working as an Office Clerk in an Import Company near to my home. Due to a recent hospitalization I'm afraid of losing that job too.

It was during my idle hours in home I started searching on the net for possible modern technics for a cure from my situation. It was during one of those session's I came across "Mailia's Miracle". I felt extremely positive after going through the entire story.

I want to thank from my heart for initiating such an online resource for sharing Mailia's story. In my lifetime I haven't seen a person who shares my grief. Later I found out it happens only to 1 out of 8 Lakh people. Even the right information about this condition is very rare in India. I came to know that my oxygen saturation is only 84-85 only when I was hospitalized last year. Mailia's story gives me hope and light to an extent that cannot be expressed by words. I wish and pray for the well being of Mailia as early and smooth as possible.

With lots of prayer's and wishes for Mailia.

Harikrishnan K R

Harikrishnan "Hari"

So over the course of this past month, we have chatted and emailed Hari back and forth, covering all aspects of potential therapies and research he has inquired about, where it concerns Mailia's journey to be healed from Eisenmenger's.

One was the opportunity for us to email information to his Cardio Thoracic Surgeon, Dr. James Thomas about the path we are exploring for Mailia's future surgical treatments and Adult Stem Cell Therapy.  Dr. Thomas so graciously accepted our communication with him...and we know, Hari is in good hands and we pray, will too...have a positive outcome now and bright future like Mailia.

Adult Stem Cell Therapy is in its infancy in India...but being afforded to those wanting to obtain it.  Hari has a great support system both at home and in his medical team.  Both Hari's parents are Ayurvedic physicians in India...hence, probably why Hari has been able to survive Eisenmenger's well into his late 20's including his practice of daily yoga.  Ayurveda is considered a form of complementary and alternative medicine here in the west.

We encouraged Hari...to do his due diligence and find the means to possibly connect with Dr. Randas Batista down in Brazil so as to work with his heart surgeon with a possibility that might afford Dr. Batista to come to India to help him.  We also encouraged Hari to start a web site and blog to start documenting his incredible journey, so as to help others in his region and country.

We humbly ask all of Mailia's followers to please send prayers and blessings to Hari...he too, is so diserving of our love and help.  Thank you Hari...for finding Mailia's Miracle!

Namaste...

The Goforth's...Max, Andrea & Mailia



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!

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