Posts Tagged ‘Aaron Tanner’

Aaron: A Progress Report

Sunday, March 3rd, 2013

Aaron has been doing well his doctors are very proud of his progress.  He is enjoying first grade and having fun being in school the whole day like the big kids. He has trouble with keeping up with everyone and is playing catch up, but he is working very hard, last year he missed more days than attended school.

Aaron TannerSo far, this year has been better, the cold season usually brings more flues and illnesses but so far so good. He started a hip hop class at the beginning of this school year and he loved it.  We were excited because it would really help with his coordination but his stamina is not up to it yet, so we will try again next year.

He still loves to dress up like a super hero as a matter of fact he had a Superhero themed birthday party with a special guest his idol, The Red Ranger made a special appearance. He really enjoyed his first real birthday party.  He was also awarded a plaque from the mayor of Brentwood declaring him a “special guy” on the day of his birthday.

He still is on numerous medications but he does very well with them. He understands a bit more about what happened and he asks many questions.  I’m so grateful to his donor and their family.  On many days I am awestruck of the gift that was given to Aaron and us.  It’s a gift to see or son do these things, it’s the most precious and amazing feeling.

Aaron playing with friendsWe are trying to play catch up with everything.  We are still struggling to pay for his medincations and I juggle the cost around as much as I can.  So many are struggling financially, so we understand how the help dropped off. I am collecting toys and gifts to take to the hospital.

As many of you know Aaron has spent a great deal of time at UCSF Benioff Children’s Hospital.  I would like to start a new tradition, helping out the families and children there that are spending the holidays away from home worried about there loved ones and their future.

Me and AaronThere are many critically ill children at UCSF.  There is an entire pediatric Cardiac Intensive Care Unit along with the regular Intensive Care Unit and a Pediatric Oncology floor where these children spend months at a time there, not only the child but typically with a parent.

We are collecting gifts to take to the hospital. These are families that are in need, they spend numerous hours in the hospital and back and fourth from the hospital most travel from great distances.  The holidays are extremely difficult on the families and their siblings, any unwrapped children’s gifts would be greatly appreciated.  Also, any gift cards I can used to purchase gifts or iTunes cards.  Message me if you would like to donate.

Aaron: Birthday Party!Thank you in advance, I know the families with great appreciate any you are able to do.  I have been so blessed by all that God has bestowed in our life and am thankful for each day.

Women’s Networking Alliance Hosts Fundraiser for Bay Area Child in Need of Double Transplant

Sunday, May 30th, 2010

The Women’s Networking Alliance Hosts Fundraiser for Bay Area Child in Need of Double Transplant49ers Safety Michael Lewis and other local celebrities support the cause.

SAN JOSE, CA – May 18, 2010 -The Women’s Networking Alliance, a Silicon Valley community of women business owners, announced they are hosting “Everyday Superheroes,” a fundraiser on June 6, 2010 at the Santa Clara Convention Center from 4:00 – 9:00 p.m. to help raise money for five-year-old Brentwood resident Aaron Tanner who is suffering from kidney and heart failure. 49ers safety Michael Lewis, who suffers from a heart ailment himself called atrial fibrillation, among others will attend the benefit to help raise awareness and funds for Aaron.

Aaron had his first of three open heart surgeries when he was just over a week old. At a time when most parents are celebrating the arrival of their new baby, Aaron’s parents were faced with the overwhelming tragedy of their older son, four-year-old, Ethan dying only a few weeks later from an undiagnosed heart condition, unrelated to Aaron’s. If that’s not enough of a challenge, The Tanner’s tapped medical insurance as hit the ceiling.

Local president of the Women’s Networking Alliance (WNA) and small business entrepreneur, Debbie Quintana, heard of Aaron’s story and decided to pull together the “Everyday Superheroes” event which will include an auction, dinner and dancing. WNA has set up a website (www.wnacommunity.com) for donations and sponsors to help support the cause in addition to attending the benefit.

Along with 49ers safety Michael Lewis, the event will feature local firefighters dressedMichael Lewis in superhero costumes and the San Jose Police Department will attend. The 49ers are also donating a VIP Training Camp Experience for four in Santa Clara. Additional support has generously come in from the Oakland Raiders, San Jose Sharks, the Silvercreek Sportsplex, Best Buy and Comcast is their executive sponsor.  The Santa Clara Convention Center even donated their newly remodeled Mission City Ballroom.

The event will feature comedian, actor, keynote speaker and author, Mark Lundholm as well as a local 16 year girl comedian, Sarah Kay. Additional talent donations have come from local bands, Above the Law and The Magnolia Jazz Trio.

“Even people from out of state have shown their support including owner of Organized Management, Al Dias, actor and entrepreneur, most recently co-starring as Big Lou in “The Good Guys” on FOX. This is absolutely amazing and I’m confident we’ll sell out.” said Quintana. “We still need help so my ask is to spread the word.” When Quintana was asked about her reason for driving support for Aaron, her response was personal, “Like Michael Lewis, I suffer from atrial fibrillation and heart disease runs in my family. Aaron has a long life ahead of him and this is just simply the right thing to do.”

The generosity of the community has been overwhelming to Aaron’s mom Elizabeth, “What Debbie and her organization have done for us brings me to tears. She truly is a super woman. I hope that once Aaron is well that I can give back and raise awareness about donor ship.”

Tickets to the event are $75 or a table of 10 is $650 and are available at www.wnacommunity.com or by calling (408) 448-6131. Donations, auction item donations or other correspondence can be sent to: The Aaron Tanner Foundation, c/o The Women’s Networking Alliance, 4960 Almaden Expressway #293, San Jose, CA 95118. Donations are tax deductible.  Debbie Quintana can be contacted directly at (408) 307-3411 or via email at debbie@debbiequintana.com.

 
Contact: Debbie Quintana
(408) 307-3411

Now He Waits…

Monday, April 19th, 2010

I have not posted an update in awhile; things have been absolutely crazy since we have been back home.

We are gone three days a week for dialysis. I did not anticipate how much time it takes to get back and forth to the city. They have increased Aarons dialysis runs to 4 hours each treatment, and it takes about a half hour or so to set him up on machine. Therefore, we are in treatment and he is doing fantastic being home. I have not seen him happier.

Just a little background info for those who are just finding Aarons story….

We are still waiting for the phone call, he is still listed 1A. I can’t tell you how many people – even nurses will ask me if we have the organs or when the transplant will take place. I have answered that question so many times.

So no, we don’t know when it will be. It will be a 5-hour warning or so because he needs a heart. In order to receive a heart, it has to come from someone — a child close to Aaron’s size, with the same blood type and match that would be on life support. He also has to receive the kidney from same donor, so he does not reject it after the transplant.

We are just waiting and waiting. Because of his age, it could be a long wait or it could happen at any moment. We have waited 6-months so far. Children in his age group tend to wait the longest. That is why we are trying to raise donor awareness, children like Aaron die each day around the world waiting on a list.

He is on an IV medication that he has to have running continuously. The medication gives his heart a little extra squeeze because he has a very very faint light squeeze in his heart, while the rest of us have these vigorous hardworking pumping hearts beating in our chests that is what has happened that is why he is in kidney failure his heart could not pump or work to keep his kidneys functioning.

Now since kidney failure Aaron does not urinate at all (we get that question a lot too) that is why he goes to dialysis to filter his blood of all the toxins. Our little tiny guy is in a battle inside that little body of his night and day every breath is hard and each pumping of his heart is very faint. He is a miracle to us and we will do whatever we can to get to his transplant we have to ask for your prayers.

Remember the movie Horton Hears a Who? I think of it often God will here all of our voices praying and Aaron’s miracle will come (WE ARE HERE, WE ARE HERE) I scream it in my head constantly because our faith will keep him strong. I can’t give up, but I am asking all of you to not give up. I am so extremely thankful to each and everyone of you for your constant prayers. In Gods time.

I am home, Aaron is home now, and we could not be happier! My boys needed to be together it was so difficult and hard on them so keep them in your prayers too. Everyone says children are resilient and so on and they bounce right back but put your children in our situation. They are all just children. They should be having fun and laughing and playing and learning, but its like they are growing up in the middle of a war.

Thank you all for not giving up, we try the best we can each day and like you, I want the best and brightest for my child. I wake up each day and thank our God for every Moment.

Aaron waits for dual transplants

Saturday, March 20th, 2010

Welcome Home Aaron and Elizabeth

Aaron arrived back home safely on Saturday. The little guy requires ’round the clock nursing and regular dialysis treatment due to his failing kidneys. Aaron must travel to San Francisco every other day, for three hours of kidney dialysis.

Elizabeth has posted a brief comment (see the side panel under “Recent Comments”) to the site. As is understandable, Elizabeth is feeling a bit overwhelmed at this time, but she promises to send an update just as soon as she is able to see daylight.

Reporter Laura Anthony, wrote an update on March 17, 2010 for ABC News 7. Read it here…
Toddler still waiting for dual transplants

More updates will be posted as they become available and you can be sure Elizabeth will let us know just as soon as she has news of the transplant surgery. Your continued prayers are greatly appreciated!

Your Prayers Sustain Us

Saturday, October 17th, 2009

Prayer warriors, we have been here two weeks. Things are on such a fast pace. 

Early this afternoon (October 13, 2009) Aaron underwent his second MRI.  He had one shortly before we left UCSF, but those images are not clear enough for the transplant surgeon, Dr. Lax, to map out the transplant. Aaron, also with being a hyperplasic left heart baby, has left atrial isomerism and heterotaxy and he is a single ventricle kid. His insides are all different than most congenital heart children. 

Wonderful Doctors

For 4-years he has been walking around and he was very sick inside his medications and surgeries were helping him. We being here with Dr. Lax are the best thing that has happened to Aaron, he is one of only maybe a few that could do this transplant. He has done them before and he has done them before with success.  Once Aaron has this transplant he will be more or less cured of his major heart problem and should be able to live a normal life.

Aaron will be listed in just a few days and he will be listed with status A1 that is the very top. When the doctor is off and not available to do surgery they are talking about putting Aaron on as status 7 that means he accrues time, but he will not be called if organ becomes available only because Dr.  Lax is the only one of the transplant doctors that can do this. Luckily enough Dr. Lax is pretty much here 24 /7. 

I think he is taking a couple days off next week, so Aaron will be status 7 for a couple  days but that means they have faith that it could happen any moment once listed. All that is happening is very good they are taking such care with everything that is happening. God has put us here for a reason and put us into the hands of a very capable cardiac team. We will have Dr. Lax as his surgeon and Dr. Alejos and Dr. Greg Perens as his cardiologist team.

Hospital Discharge

We will be discharged from the hospital maybe early next week can you believe it. We have been in the hospital since June, he will remain on his milrinome IV medication, and be assigned a home health care nurse that will check on us .

We will be nearby the hospital, their only fear is that he could go into tachycardia, but so far he has been stable the entire time. We are still in the process of trying to find housing we have a couple temporary situations. Nothing long term or permanent yet. 

The doctors feel he would have a much better quality of life right know outside the hospital being here is so hard on him. He is only 4 so I have such a hard time rationalizing it all with him. He is also at his witts end with it all. He was in the ICU almost all of that time so he has had his vitals done every two hours and had bandages changed over and over again and now his dialysis.

God Loves the Little Children

The only way I think I have managed this far is with the love from all back at home and with the Love of God, when I think I cant do it anymore and I just want to take him away from all this I always pray and somehow God has been there each and every time. He shows himself in the love from so many at home and in the love and support from our family.

Aaron is scheduled to have his MRI this early afternoon and I spent most of the morning signing consents as well as listening to the doctors explain his odds and possible outcomes and hearing that regardless he had to do this. There is a small chance that since he is in kidney failure he could have a bad reaction to the dye that is used in this MRI and develop an auto immune disease.

So, being here alone I was very scarred and nervous. Before coffee or anything this morning I was given a letter from father Dismas, telling me to stay strong it was probably sent a week ago but did not arrive till this morning.

Then Aaron and I went to the playroom when we returned there was a card from father Dismas, sent on an entirely different date that arrived also fatefully today letting us know that our family at Holy Rosary is praying for a safe and sound return home. 

That was not just chance — that was OUR GOD answering my prayers. These kind situations have happened on so many occasions throughout this whole ordeal. I was so sadden about being alone today and I was being told that I was not alone. 

Rejoice in all you have not the things because they are just that things, rejoice in having God be with you when you need it most and even when you don’t realize it. I am suffering immensely but Our Lord over and over again will not let me suffer alone he is here with Aaron and I time and time again.

God Bless you all prayer Warriors and thank you for your continued support. We are just beginning to climb this mountain.   We don’t know how long it will take but we can do it.