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.
Posted: Tuesday, May 10th, 2011