Ryan's Story
Update of 4-29-2005:
Hi everyone, I've been staring at the computer screen for a while now trying to organize the jumble of thoughts, facts and emotions that have come out of this past two weeks. As you know from the previous update, we were in NYC at Sloan Kettering for their antibody therapy. Also as I described in that update, they told us it would be painful. Something they reiterated to us A LOT before his first treatment. Still, I have to say no words could have prepared us for that first day. No sugar-coating here - - it was HORRIBLE. About halfway through the 1/2 hour infusion, he starts to feel uncomfortable and then WHAM, it hits hard. Even though he's pre-medicated with dilaudid (among other things) there is terrible pain (mostly lower back, stomach and chest) plus the feeling he's losing his breath. Some kids describe it as an elephant sitting on their chest. That feeling frightened him tremendously and at one point he asked "Am I going to die?" We had to hold oxygen in front of his face to help him breathe. As parents, it was the most wrenching thing for Paul and I to watch. That intense part lasts about 15 minutes. Thankfully, the first day is the worst and then it gradually gets a bit easier, although the next day he again asked if he was going to die. Of course, remember we're dealing with The Amazing Super Ryan here. When he asked on the 2nd day if "that breathing thing" was going to happen again and we had to say yes but were trying to reassure him, he actually said "It's okay. I can take it". Have I mentioned he's amazing?? The first week he also had significant residual pain in his hands and feet that we took care of back at Ronald McDonald with more dilaudid and warm packs. That would last till roughly dinner time. By comparison the second week was a breeze. He was handling the pain better and no longer needed the oxygen during the infusion. The nurses told me he uses less pain meds than most kids and they're quite surprised. If you ask him during the infusion if he wants more pain medicine, he always says "no". He'll just tough it out - except when Mom overrides him. In week 2 his residual pain was less as well and by mid-afternoon he's his old self again. One other common side effect that cropped up in week 2 was hives, even in his mouth. Benedryl helps that. The fact that he willingly goes back every day blows my mind. Have I mentioned he's amazing??? So, while he'll continue to have pain during treatment, it shouldn't be as bad as that first week. In a cruel irony, we actually WANT him to have pain because if he doesn't it probably means he's developed human anti-mouse antibodies (HAMA) which would mean he could no longer get the antibody therapy. They sent us home with a HAMA Kit which means we have to draw a blood sample next week and overnight mail it to them so they can test for HAMA. It's highly unlikely he's developed it this early but they test anyway. If all goes according to schedule his next round will begin the Tuesday after Memorial Day. Paul was able to stay the first couple of days but had to return to work (that pesky food and shelter thing). It was VERY hard for him to leave. My very dear friend, Sue Rivers, who lives in the Albany area came down to help out the rest of the first week and my brother Bob took the second week off to come down and help too. Through the generosity of Paul's brother we were able to fly home for the weekend in between. Since Ryan is pretty wiped out after treatment he is unable to walk the 5 blocks back to the Ronald McDonald House (something I wish they had mentioned to us beforehand). We needed a mode of transportation other than the quite conspicuous wheelchair we were using to get him back there. Within 24 hours of a call going out looking for a used jogging stroller, a family from Ryan's former preschool donated one to us. Thank-you Pentucket Workshop! We are very blessed to have such wonderful support and generosity from our family and friends and are eternally grateful to all. Now we're home (YIPPEE) and have 3 weeks off before we go back for another 2-week cycle. Ryan is feeling fine and starting to get his appetite back. He didn't really eat much at all those 2 weeks. Big surprise, eh. He REALLY missed big brother Matthew and they're back to having fun together. Very nice to see. His 6th birthday is around the corner and we're planning his Star Wars party. Those of you who know him best are probably saying "What? No Power Rangers????" Go figure. Matthew and I went shopping today and got him the Darth Vader Voice Changer he's being eyeing. (Sh-sh-sh-sh!) After all he's been through, we had to resist the urge to buy him a pony!! As always, we can't thank everyone enough for all the prayers going out for Ryan. While this has certainly been his most difficult treatment course, please pray that it delivers the knock-out punch we need. Also pray for amnesia once it's done! Happy Mother's Day to all you Moms out there. Love, Norma and Paul
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