Archive for the ‘Updates’ Category

Doctors gave us a scare!

Tuesday, May 10th, 2011

Hello family and friends,

I hope this beautiful weather finds you well and that you are beginning to see the signs of a beautiful spring. 

Aaron is doing well. We had a scare on his biopsy in February. It showed a slight rejection. Can you imagine? What would you have done?

My mind raced back to the months we spent in The University of California, San Francisco (UCSF) in the ICU and all the sleepless days and nights in the hospital here and in Los Angeles. All those hours he spent hooked up to the dialyses machine — that noise is still so clear in my head. I remember Aaron getting on the transplant list and waiting and waiting for our phone to ring.

In April, in the same sentence the Dr. saw some rejection he also said, “Well, if his kidneys reject we just will get him re-listed we don’t want to loose his heart, but his kidneys will definitely go first.”

HUH? I almost fell out of my chair — I couldn’t even respond to him. We spent a month of hell praying that the results would be clear. None of the other families that we had met like Aaron, had gone through this, but none of them were two major organ transplants either.

His cardiologist decided to wait just one-month before repeating the biopsy. The doctor repeated the biopsy in April; it came back with a perfect result.

The doctors seem to think it was a result of some changes they had made in his anti-rejection medication, at the time they had drastically reduced the amount of several, in order to save his kidneys any damage.  So, he is on a very altered treatment path than most other transplant patients. That being said, he is monitored more closely than most other transplant children are.

He will continue his monthly IVIG treatments, along with weekly clinic appointments.

He celebrated his 6th birthday on April 9th, with very few guests due to his immunosuppression. We thought he would be ready for school this spring but his doctors have said to have him wait until the beginning of next school year. He is disappointed. Aaron is really looking forward to going to school and doing normal activities that other children are able to do.

Our family has grown so much wiser our relationship together has grown and our relationship with God is so much stronger. When you experience pain like no other and grief beyond imagination, you see that the time you have to spend is precious — every minute should be enjoyed and savored — whether at work or with your family, make the most of your life now. Don’t wait for something outside of yourself to make you happy — be happy now.

Our webpage is still up and we would greatly appreciate any donations you could pass on to us, through either the website or the Aaron Tanner heart foundation. There are no fundraisers planned and we have no other donations coming in. Financially it has become very difficult, the money you donate will help Aaron to thrive with this gift of life he has been given.

Aaron Gets a New Heart!

Saturday, August 14th, 2010

It is with great joy and happiness that we inform you that Aaron Tanner is receiving his heart and kidney transplant! Please pray for a successful transplant, pray for the surgeons and staff, Aaron’s family, and the donor family.

Thank you for your prayer and best wishes for Aaron and his family!

Prayer Request

Saturday, April 24th, 2010

Dear Friends,

As you know Aaron Tanner is fighting the battle of his life. We are asking for an increase in prayers so that Aaron can receive the miracle of a heart and kidney transplant. Below are two links. The first link is a link to our blog page. There you can find updated information about Aaron and our family.

The second link is a link to our prayer page on Facebook. If you have a Facebook account, we would to have you part of our prayer page!

As always, we are extemely grateful for your prayers, good wishes and generosity.

Please feel free to share this link will all of your friends and family to increase prayers for Aaron.

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!