"Blackbird singing in the dead of night. Take these broken wings and learn to fly....You were only waiting for this moment to be free." -The Beatles

These lyrics popped into my head today and I had to fight back some tears. To the doctors, Amanda is handling her chemo well and in that coveted 95% cure rate. To those that visit with her they see a happy little girl eager to talk and play. To her parents she is a lonely and isolated child. And as parents, you can't help feel sorry for a child that has already gone through so much. We were warned that the transition from chemo to remission is very difficult to cope with. As we are approaching the end, we are starting to understand this caution; How do you rekindle friendships for a child after two years of isolation? How do you tell a child that it will be alright when she sits alone at recess? How do you remove that stigma of being the "sick kid"? How do you adjust from the constant attention and care that has become the norm?
-Broken wings just have to learn how to fly again.

Home again

All these medical problems are wearing us out!!!

I'm a bit slow in updating the health status of my kids- its been a bit crazy lately! Will was released from the hospital on March 25th. He was hospitalized for 8 days with some nasty GI bug. The doctors said because of his failure to thrive and being born growth restricted he struggled to bounce back more than the average kid. The poor thing could hardly keep anything down for a week. He dropped to 17 pounds at 19 months of age. His little arms looked like toothpicks. But since being home he's been an eating machine. It's as if all the vomiting hit a reset button on his gut. He's more than gained back what he lost. He looks great and is acting like nothing happened. The doctors still can't explain what's causing his failure to thrive beyond acid reflux and his liver producing too little growth hormones. They even ran some metabolic tests while we were there. His gut is just delayed and is taking it's own time to catch up to his age. He seems to be tolerating everything I feed him without any restrictions. It's very reassuring to see so much progress in such a short period of time. I hope it continues. As for how the parents are doing, I measure my stress level based on my Diet Coke consumption. Let's just say I highly recommend investing in Coca-Cola stock!

Oh yeah, Amanda. The person that this blog is really supposed to be about. I supposed I should have renamed this blog to include Will's name a long time ago since he's had so many medical struggles alongside Amanda. Fortunately she is more than willing to share the attention. Amanda had an LP and outpatient chemo two days ago. She is back on the steroids (ughhhhh). Actually, I am happy for it and will take the terrible side-effects. Her MRI results came back showing some damage to her shoulder joint, but in weighing out the pros and cons of continued use of the steroids that caused it, fighting cancer wins over some minimal joint damage. The break from the steroids last month came as a relief to all of us. She is having a much better recovery this round because of it.Steroids and an LP - even popcorn wont's get her to smile

I should point out that after she recovers from this round, we have only 3 more to go. Her last day of chemotherapy is July 8. Until then it's 122 more steroid pills, 22 more days of roid rage, 3 more IV doses of vincristine, one more lumbar puncture, 4 more days of IV fluids at home, 117 more methotrexate pills, 127 6-mp pills, and a whole lot of popcorn. I am reserving my excitement as we are not there yet. For several years my life has centered on taking care of medical problems. It is going to be a big adjustment.