MONDAY, SEPTEMBER 24, 2007 10:18 PM, CDT
Evan is running around and jumping at every opportunity. That's the good news. The unsettling news is that he has been complaining on and off that his hip hurts for almost two weeks. We are headed to Sloan-Kettering this week where Evan will have bone marrow biopsies and an MIBG bone scan. He submitted a urine test last week that will bear results next week. We are trying to remain positve about it and not jump to conclusions. It is hard, but we are encouraged by his level of activity.
Evan is still HAMA positive and we hope to find out what his number is when we are in NY. Hopefully it has decreased. Evan is taking his 6th round of Accutane now.
A group of parents of kids with neuroblastoma have formed a non-profit organization to raise funds for neuroblastoma research at Sloan-Kettering. We need a cure for neuroblastoma and we are working to make that happen sooner than later. The group is called Band of Parents. Gavin was appointed president of Band of Parents. Our Band of Parents website is under development.
There are 5 fathers of kids with neuroblastoma who are biking across the country to raise funds and awareness. They will finish the ride in Washington, DC on Saturday, September 29th. Please visit www.loneliestroad.org to follow their journey and share their experiences.
We returned from NY on Friday night after Evan completed an MIBG bone scan, bone marrow biopsies, another urine analysis and an MRI. The final reports are not in yet, but the doctors believe that neuroblastoma has returned in the form of a spot on his right hip bone.
During the MIBG bone scan, they occassionally flash a composite of the scan on a computer screen. Unfortunately, even though Gavin told me not to look at the screen during the test, I did. I saw a white spot as clear as day on his hip. My heart sank and I spent the next six hours telling myself I didn't see what I saw. The next day, Evan had an MRI on that spot. I have never witnessed an MRI before. It is incredibly loud. They provide earplugs, but you still hear pounding like a jackhammer, buzzing and siren-like sounds. I couldn't believe the noise. Evan had no anesthesia and managed to fall asleep. Unbelievable.
So now we wait. Tuesday, the neuroblastoma team at Sloan will meet to evaluate the tests and make a decision as to our next step. They have indicated that he will still probably need to get a CT scan. They have also indicated that Evan will probably need chemo and radiation. We hope they let us know Tuesday so we can start treatment right away.
We attended the arrival rally for the fathers of the kids with neuroblastoma as they completed their bike trip across the country today. We held up signs, cheered and welcomed them back. We then enjoyed a really nice get together at one of the home of a local family who has a son with neuroblastoma. It was a beautiful, very emotional day and it was nice to be surrounded by people who understand exactly what we are going through. I wish none of us had to go through it though.
Thank you for your prayers and good thoughts.
With hope,
Wendy
Last edited by Nimrod; 10-02-2007 at 11:01 PM.
Reason: correct the link to website
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