Ryan's Story
Update of 3-26-2006:
Once again, it's been awhile so here's the latest....
We made a trip to NY for just 3 days at the beginning of March for Ryan's scans and bone marrow biopsies.
All good news! He's still NED (No Evidence of Disease). YIPPPEEE!!!!
Then it was back to NY again on 3/12 for his 2 weeks of treatment. We just got home last night.
All went reasonably well, except that he did seem to have more pain this time than in recent rounds of antibodies, especially the first day back. Apparently that's not unusual after an 8-week break.
So now that we've accomplished our goal of 8 rounds
of antibodies (we just finished round 9), I decided to ask if we should now start wishing for HAMA (human anti-mouse antibodies) which would pretty much end his active treatment, OR wish to get more rounds of antibodies in. The answer sort of depends on who you talk to. A couple of the docs think it would be good for him to HAMA now, another thinks it's still "an unanswered question".
Their data that indicates those who HAMA do better than those who don't is based on kids who went through Sloan Kettering's protocol from Day 1, which Ryan obviously didn't. So, we don't know what to wish for, except continued clear scans!
As I said, developing HAMA would end his treatment (he would just be monitored with scans and bone marrows every 3 months) which you might think would be easy to wish for BUT, the thought of being off treatment is pretty scary.
Doing nothing leaves us fearful that if there are any neuroblastoma cells hiding somewhere, they'll now be free to be fruitful and multiply. That's not even an irrational fear since that is essentially what has happened when relapse occurs - and roughly half will relapse.
NED means no EVIDENCE of disease. Just because they can't see it with the diagnostic tools they have, doesn't mean it's not there. Neuroblastoma sometimes seems like one of those murderous fiends in horror movies. No matter what you do to kill it, it just won't die. So, we'll just keep going for treatment for as long as we can and hope and pray for the best.
Enough of the medical stuff. For those of you who don't know Ryan very well, here's a little personality snapshot for you.
He LOVES music. On our long rides to/from NY, he likes to listen to CDs. On go the headphones and he sings along with gusto. We just have to laugh because this kid can't carry a tune in a bucket - but he doesn't care.
One night last week at the Ronald McDonald House, they had a little trio band playing 50's and 60's music. He danced the night away, often the only one up there. You know that saying "Sing as if no one is listening, dance as if no one is watching" - THAT'S RYAN!! Mr. Joie de Vivre!! You go baby!
Also, in keeping with his "lady's man" status, he got the autograph of the female singer! That's in addition to his "girlfriend" Megan at the clinic. She's a secretary at the nurse's station who Ryan is totally infatuated with. She's a good sport and let's him hang around the nurse's station and plays with him.
Over the weekend we took a trip over to the Statue of Liberty and Ellis Island. I thought he might get bored but he didn't. We got the headphones for the audio tours and he listened and seemed to really enjoy it and was quite impressed with Lady Liberty.
He didn't even complain about the looooong wait in 2 security lines, one before you get on the ferry and one before you go inside the Statue. He passed the time by making friends with a very nice couple from Ireland in line behind us. Not difficult with a good Irish name like Ryan Joseph Reardon!
Inside the main building at Ellis Island, they still have a few of the original benches used way back when. His eyes got so big when I told him he was sitting on a bench that his Nanny's parents and grandparents might have sat on!
He also enjoyed playing with his friends Noah, Jenna, and Allie at the Ronald and the clinic. He likes going to school at the clinic in the mornings too and was happy to see his friend Hazen there. The two of them get into these intense games of Addition Bingo. It's really funny to watch the competitiveness.
It's good to be home again. Ryan really misses Matthew when we're away. He was so happy to see Matthew he just kept hugging him. Too cute!
Okay, I guess I've rambled on long enough.
As always, thank-you for your prayers for Ryan. Please also pray for all NB kids who are battling this disease and for the families of those who have left us.
Love,
Norma and Paul
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