The wait continues, but now Elizabeth and Aaron are doing it at home in Brentwood, surrounded by her husband and two older sons. Doctors at UCLA Medical Center agreed two weeks ago that Aaron was stable enough to go home and wait for the news with his family.
And for Elizabeth, the joy is indescribable. “You know, we drove past Lowe’s a few days ago, and Aaron looked at the sign and said “Mommy, we’re home.” And for me that was so great – to know that we are really home after being gone so long. It was so hard just seeing the boys and my husband on the weekends. This is so, so much better.”
Aaron was born with a heart that functions on only the right side. Doctors discovered last summer that Aaron – who has undergone seven open-heart surgeries since he was born – needed a simultaneous heart and kidney transplant. Renal failure has placed too much stress on the boy’s heart, and without the rare double-transplant surgery, Aaron’s chances of survival are low.
The family has been waiting for a donor for the double transplant procedure and Aaron has been at the top of the donor list since December. Doctors say a proper match could take as long as six months to a year, and since Aaron’s condition appears to be stabilized – although he goes to UCSF Medical Center three days a week for kidney dialysis – the best medicine, for the moment, appears to be at home. Should the family get the call that a donor has materialized, a medical air flight company will whisk Aaron and Elizabeth from Byron Airport to Los Angeles within the four-hour window of time. If they’re in San Francisco at a medical appointment when the call is made, they’ll fly out of SFO.
“I’m a nervous wreck, I’m terrified and I’m overly cautious,” said Elizabeth. “But I’m still happy to be home and Aaron is happy and playing and not so scared. It (coming home) was the right thing to do.”
But doctors have imposed some restrictions. Aaron must avoid crowds and public places where he might compromise his immune system. Elizabeth has adjusted by taking Aaron with her to the grocery store at off-hours and keeping visitors to a bare minimum. And when Aaron celebrates his fifth birthday this week, it won’t be the big bash he wants, said Elizabeth, but a celebration all the same.
“Well, of course he wants a big party, he’s 5,” she laughed. “But I can’t have him out and around so many people, so we’ll have to keep it more low-key. We’ll stay home, have some presents and pizza. It’ll be good.”
And as the family prepares to celebrate Aaron’s birthday, the community continues to celebrate the Tanners with fundraisers to help defray medical expenses not covered by insurance, plus the family’s ongoing struggle with the threat of foreclosure. A loan modification snafu in October placed the Tanners in arrears with Bank of America for tens of thousands of dollars. Elizabeth said she is working with a bank representative and hopes to soon reach an agreement that is reasonable and possible.
But for the Tanners, certain things are simply more important. “We saw the cardiologist last week and he said he didn’t see any big changes in Aaron from when he saw him in June,” said Elizabeth. “So if we can just hold on, we’ll be OK. Every night we have a bag packed and we’re ready to go. Wherever we go, we take the bag with us. We know we are going to get that call and we are ready. Right now it’s about being together and keeping things as normal as we can. Time with each other is the most important thing we have, and we’re not taking a minute of it for granted.”
Upcoming fundraisers for the Tanners include a benefit called Everyday Superheroes, hosted by the Women’s Networking Alliance on June 6 at the Santa Clara Convention Center. For more information on the event, visit www.wnacommunity.com or call 408-448-61631. A list of additional upcoming events in support of Aaron can be found on the family’s Web site, www.saveabrokenheart.com.