Hi everyone,
We're back from New York having completed Ryan's 7th round of antibody therapy.
All went well.
The best news is that while we were there they did bone marrow biopsies, an MIBG scan and a CT scan and all came back negative!!
He's still clean!!
We head back for Round 8 the day after New Year's. Eight rounds is the minimum we wanted to get in so we're happy we've made it this far without him developing HAMA (human anti-mouse antibody) which would mean we'd have to stop treatment at least temporarily. We hope to keep going for several more rounds. The more the better!!
Being the Christmas season, we did have some fun while we were there. Ronald McDonald House is a bevy of Christmas activitiy.
Almost nightly parties with gift giving donated by various companies/businesses.
One wonderful party was especially poignant as it was done by the family of a child who passed away a few months ago.
They had been residents of RMDH and since they knew first hand what it was like to be there and understood all too well the anxiety and stress the families face, they wanted to do something special for the kids.
How amazing, in their time of sadness, to think of making others happy.
Paul and Matthew were able to come down on our "in between" weekend once again. Saturday we went to Rockerfeller Plaza to see the Christmas tree.
It was great to see the tree but the crowds were unbelievable. A human traffic jam!
We went back to RMDH, took a rest, then set out on our best adventure ever! A trip to the North Pole!!!
Courtesy of Southwest Airlines, we boarded a bus to the airport on Long Island, got on a 737 and took off.
They got permission to fly at 2000 feet over Manhattan - something that hasn't been done since 9/11 unless you're in a fighter jet - to give us great night time views of the City including the Empire State Building, Chrysler Building, many bridges, etc.
I can't imagine the red tape they had to wade through to pull that off. Hats off to Southwest Airlines!!
After we zipped up and down the Hudson River, we veared off and soon landed at "The North Pole" of Long Island.
There we were treated to a fabulous party inside a hangar.
Of course, Santa made an appearance and each kid got to go up and talk with Santa and have a picture taken.
Then it was back on the bus for the long DRIVE home from the North Pole, which the kids mostly slept through.
The boys had a great time and are convinced they were at the North Pole so SH-SH-SH-SH-SH.
This past Saturday was the lighting ceremony of the Childhood Cancer Awareness Tree in Washington, DC.
The tree is decorated with ribbons which could be purchased by families in honor of or in memory of a child who has or has had cancer.
Ryan has his gold ribbon on the tree! I believe they send it to you when the tree is taken down.
Even though we're happy to be home for Christmas, we were deeply saddened to learn on Saturday of the loss of one of our NB friends, Andrew, who passed away on Friday. Our hearts and prayers go out to his wonderful family.
People still wonder why we're not doing cartwheels over Ryan's remission.
It's quite an emotional rollercoaster.
We are indeed thrilled to have finally reached this goal BUT Ryan has roughly a 40% chance at long-term (over 5 years) survival.
Imagine if you were told one of your children had a 40% chance of being here 5 years from now. Would you be celebrating??
We treasure each day together, and are committed to fundraising efforts to help make that 40% soar upward in the future.
We've been fortunate in many ways as Ryan has tolerated most of his treatments very well.
However, we see far too many kids who suffer greatly and far too many anguished parents.
New treatments, especially for relapse are desperately needed.
I don't like to turn this update into a "pitch" but please visit www.for-ryan.org and tell your friends about it too.
There are many new auction items recently added.
If you're not interested in any items, you can still direct donate on the site.
Our best wishes to all for a very Merry Christmas and a Happy and Healthy New Year!
Thank-you for your prayers for Ryan.
Love,
Norma and Paul
