Ryan's Story
Update of 9-06-2004:
I'm very late with this update, so here's the latest.
First and foremost, Ryan is doing great. He started taking Karate lessons in June which he enjoys immensely . We're hoping this will help build up his muscle strength, coordination and agility which are all a bit behind other kids his age.
Best of all, later this month, we will celebrate Ryan's ONE YEAR ANNIVERSARY of being declared NED (NO EVIDENCE OF DISEASE). We'll be heading back to NY for scans and bone marrows later this month, almost to the day of the anniversary. By the grace of God, we'll be celebrating this anniversary for many, many, many years to come.
We were in NY for Ryan's 11th round of antibodies in July. Since it's summer and there's no school, Matthew came along too. He made a couple of new friends - other sibs - to help pass the time. We also were able to reconnect with some of the other familes we've met in the past but whose schedules haven't coincided with ours in a while so that helped pass the time at the Ronald McDonald House.
After his treatment on Friday we hopped a train and were treated to a lovely
weekend get-a-way at our friends Sue and Bob's lake house near Albany.
Canoing, tubing, and relaxing. Paul was able to drive out to join us so we
could all be together. THANK-YOU Sue and Bob!!
Ryan had had a slight fever over that weekend and Monday morning at the clinic
they determined he had an ear infection started him on IV antibiotics. He received his antibody treatment that afternoon but then his fever really spiked and wouldn't come down. That earned us an unexpected admission to the hospital. Since he still has a port in his chest, they worry about a line infection and don't like to take chances. It also meant that Paul, who had just driven home that morning, had to turn around and drive back to NY to get Matthew since he isn't allowed to stay with us in Ryan's room. BTW, a HUGE thank-you to our friend and fellow NB parent Scott, who came to the rescue and let Matthew sleep in their room at the Ronald McDonald House that night since Paul wouldn't arrive till after midnight. So, inconvenience aside, and in the "everything happens for a reason" category, we did have an interes ting experience while inpatient. Our roomate was a nice teenager named Francesco. His mother, through someone in a parish near hers in Brooklyn, had for one day a glove that belonged to Padre Pio, the Capuchin priest known for the stigmata and for his miraculous cures. This glove was one of a pair that had originally been given by Padre Pio to a women who visited him once in Italy in, I believe, the early '60s. This one is now in the possession of a man in this parish who circulates it and loaned to this boy's mother for the day. She let us and others on the floor to have it for a few minutes and Ryan and I
got to hold it and we said a little prayer. So maybe we were meant to be admitted and to be this boy's roomate for this purpose. Maybe it's one more step in Ryan's complete and permanent healing. In the end, nothing grew out of Ryan's cultures and his fever broke Wednesday morning - no line infection! The inpatient attending still wanted to keep us one more day which made Ryan cry. He hadn't been inpatient since March of 2005 and was NOT liking this at all. I put up a bit of a fuss about it and by that night, we got the okay to be released. Squeaky wheel gets the grease!! The rest of the week went as it should.
It was good to be home but after just one week it was time to pack up again and
head for vacation on Cape Cod!!! Our first family vacation except for Ryan's Make-A-Wish trip in 2004. MAN, did we need this one. One full week in beautiful Eastham. Our motel had a pool so we spent LOTS of time relaxing there. Matthew was able work on his new swimming skills, including underwater
summersalts and handstands . Ryan's not really swimming yet but was still doing
modified cannonballs off the side (into the shallow end) and having me count how
long he could stay underwater. We enjoyed a whale watch out of Provincetown
which was a favorite with the boys and hiked a trail at the Audubon Sanctuary in
Wellfleet where we saw Green Herons, turtles, frogs (or maybe they were toads?), hermit crabs, etc. Our one beach day was highlighted by a seal popping his head out of the water to look around just about 100-150 feet offshore and then later a fox crossing the road we were taking up to the Nauset Lighthouse. We certainly got our fill of wildlife! A few games of miniature golf, a drive-in movie and lots of seafood rounded out a wonderful week. It was nice to be someplace with lots of cooling off options during the heatwave.
The weekend of Aug. 5th and 6th was the annual Pan Mass Challenge (192 mile bike event that raises money for Dana Farber Cancer Institute). As some of you know, Friends for Life has a team that rides with the money they raise going specificically to Neuroblastoma research. On our way home from the Cape on the 5th, we took a small detour and stopped off at the Friends For Life rest stop in Berkley, MA to cheer on our team and see some of our local NB families, The Dodds who founded Friends for Life and the Solloways whose daughter Jenna was the team's Pedal Partner again this year. Some of the other team riders were NB parents riding with broken hearts but also with the hope that this research money will ultimately spare another family the loss they have had to endure.
We also learned that day that Ryan can participate in a study being done (thanks to Friends for Life funding) by Dr. Judah Folkman at Children's Hospital that will, hopefully, one day, allow doctors to detect relapse MUCH earlier than is now possible. It won't have any impact on Ryan's treatment but the data collected will help future generations of NB kids. It just means giving a blood and urine sample from time to time at the Jimmy Fund Clinic. Well worth it.
Well I think I've babbled on even longer than usual so I'll sign off now.
Please keep those prayers going for Ryan and for all kids battling Neuroblastoma
and other childhood cancers.
Love,
Norma and Paul
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