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 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 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 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 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 5 hours and 400 miles 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 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 was all perfect.

Lafayette, Louisiana was our resting spot the following Friday evening and oh my 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 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 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 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 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 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...

Tuesday, May 18, 2010

Days 2-5 - California, Dr.Black's Evaluation and still...Dominican Republic Bound!

Just got to a point where I could get some quiet time to focus on writing without the bouncing effects of our washboard highways. We just pulled in to a little Arizona town (Benson) off Interstate 10 and Mailia and Max are resting.
I suppose I should commence where I left off in my last blog post…with our heading south to Mailia’s grandparents house in Turlock, Ca. where we had a wonderful visit with them and spent the night.

 We were to head out the next day, Sunday…into the beautiful city by the bay…San Francisco.

San Francisco was amazing to experience, especially for Mailia. She took it all in and photographed everything she saw. After checking into our little hotel, a convenient 3 blocks away from California Pacific Medical Center…we decided to take Mailia for some dinner and so, grabbed a cab down to Pier 39 for dinner at Bubba Gumps.

Mailia had not ate at Bubba Gumps since her Make a Wish trip to Maui…she remembered the shrimp…and what a feast it was. They did their best to accommodate her huge appetite and brought her out 1.5 pounds of Canjun hot shrimp. Made famous from the Forrest Gump movie…it is one of the best places on earth in our book and the quotes all over the walls…oh my gosh, like the following Mailia could not believe:

Bubba: Anyway, like I was sayin', shrimp is the fruit of the sea. You can barbecue it, boil it, broil it, bake it, saute it. Dey's uh, shrimp-kabobs, shrimp creole, shrimp gumbo. Pan fried, deep fried, stir-fried. There's pineapple shrimp, lemon shrimp, coconut shrimp, pepper shrimp, shrimp soup, shrimp stew, shrimp salad, shrimp and potatoes, shrimp burger, shrimp sandwich. That- that's about it.

When we finished, we called the same cabbie, Carl…and he whipped over to pick us up after dinner and amused us with his liberal wit and philosophy. Topic…Health care and reform...sigh.
After a peaceful night, we checked out of our hotel and made it to the California Pacific Medical Center right at 8:00a.m. Monday morning and there standing inside the hospital entrance waiting for us as promised, was heart surgeon Dr. Michael Black. He took us to admitting and visited with Mailia and SteelDust while dad went and parked and I got her admitted.

We then went straight for the ECHO that was done by Liz and Dr. Black. From what he could see…it all looks good except for some leakage that is hard to see on a ECHO. We then went to his office and had a good long talk.
He would consult with Dr. Popper on Tuesday and have the ECHO read and reported by Wednesday and pdf us copies for Dr. Grekos in Florida.

We discussed the future options he has for Mailia:

1. Banding the pulmonary artery

2. Banding the pulmonary artery combined with a double flap patch for the VSD

3. Artificial heart or right ventricle assist device implanted

These would potentially occur after seeing improvement or at a period of time where there would still be a window of opportunity for the stem cells to be still viable and able to heal her lungs.
He wanted to know if we would be able to come back through SF on our way back home to see him and Dr. Popper for a follow up…that just might be a possibility.
All in all…a great visit which left us very hopeful and clear on a miraculous path forward for Mailia.  Dr. Michael Black is a diamond in the rough...our hero.  We are very grateful to him for spending an enormous amount of time giving us hope and validating our see Mailia healed.

When we left San Francisco Monday afternoon, we headed south on I-5 thinking we could make it in to the Palm Springs area for the night.  We managed to skirt the L.A. area during rush hour and made excellent time.  This morning...we slept in a bit and got a late start but also made good time getting though Phoenix and Tucson Arizona without much ado.  Mailia was absolutely facinated with the desert and the cactus varaties all over the plains and mountains.

We had to make a pit stop in Casa Grande to exchange 15 empty oxygen tanks...that surprisingly only took 20 minutes, including time to visit with the folks at Lincare.  Mailia's respiratory therapist...Ken Guin from Richland, gave us a Lincare directory and is a phone call away to set Mailia up with oxygen on her journey to Florida and back.

We have been getting daily updates and photos from home, of all the critters esp. the ones that are super attached to Mailia and she them.  This is the hardest part of the trip I think...her homesickness.  We validate this...but can assure her they are all fine and she will be back home soon.

Tomorrow we do the great state of Texas...and will see what the next couple of days bring.

Till then...all our gratitude, love and blessings.

The Goforth's...

Friday, May 14, 2010

Miracles Do Happen...Adult Stem Cells On The Horizon!

Twenty days ago, we were all reeling from a wonderful and successful benefit fundraiser for Mailia’s Night of Hope. We were so grateful and happy to have so many people and businesses come forth to support Mailia…that prompted me to share the particulars of the event, with Dr. Grekos and his team at their Regenocyte clinic in Florida.

I wrote them a couple days after Mailia’s fundraiser to tell them how much we had raised to date, how grateful and excited we had become at the prospect of getting us a little closer to funding Mailia’s initial stem cell therapy.

A day later…I had an e-mail from Greg and Nancy saying they had some wonderful news to share with us. Apparently…an incredible miracle itself…was forthcoming as they told us a benefactor had come forth through the nonprofit Alliance for Adult Stem Cell Research and Therapy to cover the remaining funds needed for Mailia’s procedure in Florida and the Dominican Republic. I about fell out of my chair and you can imagine the emotions that ran through me when we received this miraculous news. When I told Mailia…she too became so overwhelmed and excited and asked…”how soon can we go”?

The news came on a Thursday…and we quickly looked at our schedules…our employers and everyone else’s including the schedule of Dr. Grekos in Florida…who would oversee Mailia’s blood draw and the lab in Tel - Aviv who would process her blood and stem cells, to the doctors and hospital in the Dominican Republic…and last but not least, a preliminary visit in San Francisco, Ca. with Mailia’s future heart surgeon Dr. Michael Black who would need to get a baseline and assist with some preliminary testing.

The date for the blood draw would dictate and be the driver for everything else and we were told by Nancy that May 25th would be Mailia's scheduled blood draw, the blood being couriered to Tel - Aviv Israel for processing and then her actual stem cell procedure would occur a week later on June 2rd in Santo Domingo, Dominican Republic.

So with this news...we had to hurry up and materialize everything in readiness for our trip, for this was not going to be any ordinary trip...for Mailia cannot and should not fly by commercial air.  No...a nice long trip by vehicle all the way to Florida and back, going the southern route in order to maintain Mailia at sea level as much as possible...was the order of the day.

The weekend we received this wonderful news and once we had a date...the wheels started to turn and the universe opened up the portals to bring us the guidance we so desperately needed.  Dr. Julia Robirds, her husband Kelly and their wonderful staff had made arrangements weeks before to come meet Mailia personally on May 2nd and bring her a "huge" check from their fundraiser two weeks prior.  Talk about an exciting day...they had no idea and when we told them the news and how everyone these past few months who have literally come together to do what they could to help Mailia...well all I can say is that this is very special and very big!

This past week we scrambled to find the means to make it all happen.  Planning a trip like this...working with our employers who were kind in spirit afford us the time off and all our support system in our community (you all know who you are) really step up and help with additional fundraisers, like Jesica and Tammi...who once again, came out for MORE...last weekend with a wonderful hot dog and bake sale at Columbia Basin Grain & Feed this past Saturday.

The folks at Eagle Printing...Chris, Trina, Shellee and Dave & Marci Henry made Mailia a beautiful Mailia's Miracle vinyl stenciling for our Ford's side and back windows.  As we travel south making our way from Washington...south through Oregon, California...Arizona, New Mexico, Texas, Louisiana, Mississippi, Alabama and finally can bet folks will see the "Mailia's Miracle Mobile" in route.  Thank you so much for this beautiful gift!

In we left the Tri Cities this morning...halfway to Hermiston a vehicle pulled up beside us and a Red Tri Mini Aussie was just a grinning at us and literally waving!  Mailia said "It's Cowboy"!  We pulled off to the side of the highway and met Julia's husband Kelly, his friends Paul and Mike who saw Mailia's photo and logo on the side of our rig.  They could not believe it and Kelly was adamant that Mailia was destined to have this miracle.

We will make it as far as Roseburg Oregon tonight....and get to our folks place in Turlock, Ca. tomorrow and rest up before we venture into San Francisco Sunday evening.  You see...we also have been blessed to meet and see Dr. Michael Black who will be available to see Mailia first thing Monday morning, the 17th of May at California Pacific Medical Center so she can have an ECHO done on her heart as a baseline and we can discuss a path forward with Dr. Black...on her future heart repair.

I think this is a good point to exit...Max is looking to exit off the interstate now so in closing please know how truly grateful we are...especially to Ramona and her family and to Edwardo...for taking care of our home and animals while we are gone.  God Bless you all!

P.S.  My fortune cookie this week said:  Your traveling East...will result in great rewards.  I know!

P.S.S.  Pictures soon!