Boo!! #Lifeaftertransplant isn’t always scary!!

We’ve been silent for almost two whole months on here, which ironically means a lot is going on behind the scenes. Too much to take time out for a post! The great news is Addison continues to do awesome with her health. A couple of minor sniffly noses already, and family flu shots done. Regular blood work is looking good, and our next clinic appointment is still a few months away…which may prove to be an interesting meeting.

In the summer her transplant team wanted us to increase her dose of Tacrolimus, one of two anti-rejection drugs Addison takes twice a day, because her Tac blood levels were starting to slowly decrease. That’s to be expected because she is growing and getting bigger. But Tac is incredibly toxic, so Aaron and I have always advocated for the “less is more” approach. We know it’s one of the drugs that keeps her ‘heart and body from fighting’, as we explain it to her, therefore keeping her alive. We also hate it. The immune suppressing drug regime is so hard on the body. We are always on high alert for the long list of horrible things it can do, and this is one of the main reasons why transplant isn’t a cure. When she pops those pills, I try not to think about how poisonous they are, and it’s very hard as a parent to knowingly give your child something that is so awful for them. It’s a love-hate relationship frustrated by the fact no one knows which is worse: giving Addison too many drugs to ensure there is no rejection but making her even more susceptible to side effects and infections; or giving her too little and potentially dealing with rejection down the road. There isn’t a huge amount of research/evidence to give us a definitive answer.

And of course, Addison has already proven to be unique, though I would argue every transplant child/patient should be treated with personalized medicine. When she was in her first couple of years post-transplant, she had to be hospitalized twice for two very serious infections, plus she had a really tough time fighting colds. Her team ran a special pharmacokinetics test to see what the Tacrolimus was doing in her body. They learned the medication levels were peaking much too high so her target level was moved down considerably from the “normal” protocol. We have been targeting those lower numbers since then and Addison has done really well. But now there is some talk amongst her team (we have a new cardiologist slowly taking over) that we should go back to the “normal” protocol. You can imagine how that is going down for this momma tiger. Anyhow, the discussion hasn’t taken place yet, but I am sure this means more pokes and tests for my little girl.

Love you Grandma!

We also had a very sad event at the end of September. Addison and Charlie had to say good-bye to their Grandma. Aaron’s mom had been dealing with several serious health issues over the past few years, and thankfully we were able to get to Grand Forks in time to see her before she passed peacefully at home. We also had a good visit in August when she was still able to be up and about a little.

Grandma with Charlie – summer 2016

Addison has an interesting perspective on death. She talked about how she felt mostly sad for Charlie because Charlie won’t really get a chance to know Grandma. And she also asked if Grandpa will be lonely now. We told her hopefully we’ll get to see Grandpa more often so he won’t be lonely!

Onto this week…it’s all about Halloween of course, at least for Addison. Charlie is more interested in riding the wagon, and definitely not interested at all in wearing her costume. For Aaron and I, the big focus is moving back to our house after six months of renovations. So you can imagine the chaos in our lives over the next few days!

The work/life/kids juggle continues! But hopefully there will be less chaos when we are settled in back at home, post Halloween sugar-high. (I’ll try to post some family Halloween costume photos later.)

Love,
Elaine, Aaron, Addison and Charlie
aka Tin Man, Scarecrow, Dorothy, and maybe the Lion

3 thoughts on “Boo!! #Lifeaftertransplant isn’t always scary!!

  1. It was a very informative messsge. And brought back many memories. Sending love to the very special family. From ours to yours

  2. Lovely to get a news update from you. Hard to believe how grown-up Addison looks! Hoping with you for the best possible solution to the Tac. Issues.

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