Hello and Happy Thanksgiving to all!
Ahhhh, sleeping in our own beds again after our 10-stay in NY. We went there a couple of days early to do Ryan's scans and bone marrow biopsies, then his week of treatment.
We're happy to report his scans are all clear and his 13th round of 3F8 is complete!!! This was his second round of the double dose and it seemed to go a bit better than the first.
Lots of pain still and hives but his heart rate and blood pressure weren't as high for as long this time - which meant neither was ours!!
Matthew went with us for the first part of this trip. After Paul took Ryan for his CT scan on Friday morning, he and Matthew went to the Empire State Building in the afternoon while I stayed with Ryan for his bone marrows and MIBG injection.
Ryan had already been to the Empire State Building before so didn't miss out. Saturday after Ryan's MIBG scan, the guys all went to the Museum of Natural History.
I and another NB mom went to a memorial service for 5 year old Hazen Kennedy who had passed away the week before. I've mentioned Hazen in previous updates.
Often when we lose a child we know from Sloan, they return to their home state or country and we don't have the opportunity to offer our support in person. Hazen happened to live in NYC and his memorial happened to fall when we'd be there. Obviously, I was meant to go. Hazen's Dad gave a beautiful and touching eulogy at the end. We then all walked to his favorite playground and released balloons.
Another of Hazen and R
yan's buddies, Elijah, passed away just 3 days after Hazen.
Ryan is unaware of all this. He was unable to attend the school at the clinic this trip and that is where he'd usually see them. Please keep both these families in your prayers.
Backing up a bit, upon our arrival in NY on Thursday the 9th, we got news that my (Norma's) brother Dick was in ICU at Salem Hospital. He has congestive heart failure and apparently ran out of his medication for a couple of days, which is obviously a couple of days too long.
I left for home with Matthew on Sunday. Paul had to take time off from work to take care of Ryan during his treatments until I returned on Wednesday afternoon. Even though the control freak in me was......well......freaking, from all accounts, including Ryan, his wonderful Dad did a great job.
As for my brother, in a nutshell, after a little more than a week and a half he is still in ICU and still on a ventilator. He's made progress and we are hopeful for his recovery but he has a long way to go. Please keep him in your prayers.
On the lighter side, Ryan got to see many of his little friends this trip - some he hadn't seen in many months like Alexandra and Noah (www.noahnelson.blogs.com). He and Noah wowed the crowd at Ronald McDonald House on American Idol night with their karaoke duet performance of a song from High School Musical. AND ME WITHOUT MY CAMERA!
When the judges gave them that yellow paper saying "Congratulations, you're going to Hollywood" they thought they were going for real. MAJOR disappointment!!
Two of Ryan's wonderful and dedicated doctors at Sloan, Dr. Kushner and Dr. Kramer, both ran in the NY Marathon this month as part of Fred's Team https://fredsteam.mskcc.org.
Together they raised over $35,000 for pediatric cancer research at Sloan Kettering. How they found time in their insanely busy schedules to train for this event is beyond me. We're thrilled they're a part of Ryan's Team too!
It was definitely a very emotional trip this time. There was no shortage of both good and bad news, highs and lows.
We were thrilled that our friend Nick (www.caringbridge.org/visit/francafamily) got good news when a suspicious spot on a scan turned out to be nothing.
I heaved a sigh of relief with Bronson's mom after they got good scan results as well (www.caringbridge.org/visit/bronsonbalzac) .
He had been complaining of abdominal pain for a while and anyone in the NB world knows that a kid complaining of ANY pain ANYTIME is enough to send a parent over the edge and reaching for a paper bag to breathe into.
On the downside, we learned on Friday that our friend Justin (www.caringbridge.org/visit/justincollins) had relapsed. So as I said, many emotional highs and lows.
From time to time I do a little begging in my updates.
After reading this update I hope you understand why.
We know too many families who will be spending their first Thanksgiving and Christmas without their child and still others who are bracing for the first anniversary of this loss.
Still more who will spend it in treatment and far from home.
As the holidays draw near, and we shop till we drop, fight the mall crowds, spend too much on stuff that'll get thrown in the back of a closet or end up in the bottom of the toy box, engage in near mortal combat for the latest electronic "gotta have it" item, please take a moment to read the following facts and consider donating some of your holiday dollars instead to pediatric cancer organizations.
Did you know.....
Each school day, 46 children are diagnosed with cancer.
One in 330 children will develop cancer by age 20.
Approximately 12,400 children are diagnosed with cancer each year.
In 1998, about 2500 children died of cancer.
Although the 5 year survival rate is steadily increasing, ONE QUARTER OF CHLDREN
WILL DIE 5 YEARS FROM THE TIME OF DIAGNOSIS.
Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS COMBINED.
Although large cancer societies do great things, they historically have not utilized their resources for Pediatric Cancer. Only 3% of all money raised by a major cancer charity was spread over all 12 types of childhood cancer research. Only .03% of every dollar went to Neuroblastoma.)
About 75% of children with Neuroblastoma aren't diagnosed until the disease has already reached Stage IV and metastasized throughout their bodies making it one of the most difficult to cure.
Of the children with Neuroblastoma who, like Ryan, are lucky enough to reach NED (No Evidence of Disease) status roughly 50% will relapse. Relapse is virtually incurable.
Here are a few good organizations to consider:
Our favorite of course is "For Ryan" (www.for-ryan.org) an ongoing, online auction which funds Neuroblastoma research here in Boston in association with Friends for Life (www.myfriendsforlife.com). Hey guys, Christmas is coming. Lots of jewelry up for auction!
"Children's Neuroblastoma Cancer Foundation" (www.cncf-childcancer.org) funds promising Neuroblastoma research wherever it's happening. They have a number of programs including "Lunch For Life" which asks you to brown bag it for a day and donate your lunch money to CNCF. Also......
Coins for Kids (www.coins4kids.org) begun by our buddy and fellow NB Warrior Dawson DeCap's family, works in association with the above-mentioned Children's Neuroblastoma Cancer Foundation. A good one to get kids involved with.
"Alex's Lemonade Stand" (www.alexslemonade.org) funds pediatric cancer research (not just neuroblastoma I believe). Another good one for kids.
Camp Sunshine (www.campsunshine.org) located in Maine offers respite, fun and support for children with life-threatening illness and their families. They also provide bereavement groups for families who have lost a child to illness. Our friends the Ramsdens lost their son Jack 11 months ago and have found Camp Sunshine a great source of support for them and their daughters.
Okay, I'm done begging.........for now. Soapbox back in closet. I'm sorry if too much of this update was a "downer", but this is the world our family lives in every day and the realities we struggle to live with.
Thank you for your prayers for Ryan and all the brave children facing this horrible disease.
Have a wonderful Thanksgiving everyone. Just be sure to pause a moment and actually GIVE THANKS for all your blessings. We will.
Love,
Norma and Paul
P.S.
Oops, almost forgot. Once again this year, Ryan will have a ribbon on the National Childhood Cancer Awareness Tree (www.candlelighters.org) which honors children who have, or have had cancer.
It is located in Washington, DC. The lighting ceremony will occur on December 9, 2006.
Ryan's ribbon was one of over 4,000 ribbons which adorned the tree last year.
An estimated 60,000 visitors will view the tree this year.
