Monday, May 23, 2011

Getting There

I just scheduled Amanda's surgery to have her port removed at the end of June. There is a sense of disbelief that we are finally getting there. She has her last lumbar puncture on June 15th. She does have to go in for an MRI next month. Her last treatment proved to be more painful than usual. She's again off her steroids right now (much to my relief) and will go in to determine if the drug is causing joint damage. Only six weeks left of treatment. Yeah!!!

If you ask Amanda how she feels about all of this, she will let you know that she is not excited. She cries about missing her treatments, missing the hospital, missing the life she now knows. According to the experts, this is pretty normal. There will be some adjusting for all of us. She had her old friend stop by. It helped rekindle her spark for social interaction with friends. It will take a lot more interaction like this to get her feeling comfortable again with the world outside of chemo, family, and video games. It will take some time, but I think for the most part she will adjust. She's already proven herself pretty resilient.
As for myself, I cannot look at life the same way. For example, her cousin's friend was just diagnosed with liver cancer. I painfully understand what those parents are going through. I can't ignore it and am deeply saddened each time I hear of other children beginning treatment. But, I do know that there is great purpose in what pediatric cancer patients go through. They were not randomly selected to endure this. God knows that they are very strong souls.

On a less dramatic note, part of our moving on process is to participate in Relay for Life (as you can see the details below) and to have a very big party to celebrate the end of chemotherapy. We'll post more details later. Amanda has already made it known that swimming is order.

Erin and her great fashion sense. She calls her ringlets "slinkys." When she's in a good mood, she's my comic relief to all of this.

Will is doing great. The new medication to help him gain weight is working great. He gained so much last month that his doctors were shocked. All the months of running tests and exams have ruled out any genetic or metabolic problems other than the blood clotting disorder. He's eating and tolerating just about everything now. His physicians finally agreed that his digestive track was delayed from the blood clot he was born with, and that his liver just wasn't producing enough growth hormones from his inability to eat enough. I think we are over the bad cycle this caused. It is such a relief to have one less medical problem in our household.

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