Ryan's Story
Update of 6-1-2006:
Hello all!
We just got home last night from our latest 2-week trip to NY. It's soooooo good to be home!
All in all, everything went fine. As is usually the case after these long breaks, his first day of treatment was a bit rough with lots of pain. It got a bit easier as the week progressed. During the second week he began getting hives again. He hasn't gotten them for the past few rounds but they're back! He gets them mostly in his mouth and his cheeks puff up like a little chipmunk! A little Benedryl and/or Vistral and it usually goes away after awhile. His "new thing" this time was a cough that developed as a reaction to the GM-CSF shot he gets every day during treatment. The hospital wasn't sure that was the cause but I really believe it is since he didn't get the shot on Friday and that day he didn't have any coughing at all. Anyway, they tried treating it with more Visteral and then a nebulizer treatment but neither worked. The poor kid would cough insessantly for several hours (sort of a dry croopy cough). This makes him somewhat unpopular at the Ronald McDonald House where parents get skittish when a coughing kid is around their immune suppressed kid. His wasn't due to illness though but that's hard to explain to said skittish parent. So we pretty much stayed in our room until it passed. Then, as luck would have it, our friend Alexandra and her mom Kelly arrived for scans. I remembered that Alexandra had had this cough problem a while back and her mom said the only thing that helped was a particular over-the-counter cough medicine. She picked us up a bottle and it did the trick!! Sometimes moms really do know best!
Also during our first week, the Clinic had a visit from 2 NY Yankees. At first, Red Sox Fan Ryan wanted nothing to do with it but I convinced him to hang around just in case one of the players was our own prodigal son, Johnny Damon. Sure enough Johnny appeared along with Bubba Crosby. Ryan got an autographed baseball and a photo of him high fiving Johnny. He told Johnny that he was a Red Sox fan and the reply was "Yeah, I used to play for them back when they were good". We'll let that one slide since the cameras were rolling.
Ryan had his CT and MIBG scans as well as bone marrow biopsies done. The scans all came back fine. YIPPEEE!!! We still await the bone marrow results.
Ryan celebrated his 7th birthday (Sat. May 20th) while in NY. At first we were disappointed that we wouldn't be home to celebrate but it turned out to be quite a nice birthday. On Friday the playroom at Sloan gave him a little party with an ice cream cake and 2 presents. One of the presents was a very nice Bingo game. He LOVES Bingo so that was a big hit. My friend Sue came down from Albany to spend to help make Ryan's birthday weekend special, which was a nice treat. We took him to a place called Mars 2112 on Saturday. YOu get a simulated space ship "ride" to Mars. We had a lovely lunch on Mars, complete with visits to our table from very friendly Martians. He loved every minute of it. The best part though was the surprise visit from his favorite nurse in NY. Gail was his primary nurse until December when she left Sloan Kettering (much to Ryan's disappointment). With the help of his new primary nurse, Chris, we were able to arrange this surprise for Ryan. Gail very kindly took time out of her Saturday to go to Mars with us. He lit up like a Christmas tree when he saw her. Cab ride to Mars 2112: $6.00; Space ship ride: $8.00; Look on Ryan's face when he saw Gail: Priceless!!
As seems to be happening all to often lately, I'm saddened to report that we have lost 2 more of our little NB friends. Nine year old Shawn became an angel last week. We met him and his mom when Ryan was first diagnosed. At that time Shawn had been NED for over 3 years and his mom Liz graciously reached out to us to offer hope. He relapsed a few months later and fought a long and brave battle. Three year old Allie became an angel this past Tuesday. We met sweet Allie and her equally sweet mom Keri in NY last year. I learned of her passing while visiting another friend Jenna's site ( www.caringbridge.org/visit/nhjenna). As Jenna's mom said in her post, we all wish we could have met under different circumstances because we know we would have been friends no matter what. I last saw Keri the day she and her husband were leaving to take their baby home to wait for the unbearable. I could only give her a long hug and hoped it said all that I felt as words would not come. Please pray for both these grieving families.
So we are once again thankful for Ryan's health and are reminded to relish these "ordinary" milestones like a 7th birthday.
Please keep all familes grieving this loss as well as our NB warriors who are still in the fight in your prayers.
As always, thank-you for keeping Ryan in your prayers too.
Love,
Norma and Paul
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