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November 16, 2006
By Margot | November 16, 2006
It’s funny how this rollercoaster goes. I was going to post an update on Monday that basically said that for the first time in many months Neil and I were able to pick our heads up and look around at things. We were actually talking about things in our lives a few years into the future. Usually we don’t get much past tomorrow. As I was thinking about posting something cheery on Monday, Neil called and said four words that seemed to take the oxygen out of the room, “Penelope’s LDH is way up.”
Penelope’s disease is back and seems to have outsmarted her treatment again. She is starting high dose chemo today and we are just sick for the Londons. Please keep her and her parents in your thoughts and prayers. They are now having to make decisions that no parent should ever have to make and desperately trying to save her life. This nasty disease can move very quickly.
Head down. March march march. We are on day three of four days of chemo. These make for long weeks. Sam and I get here at about 8am every morning and leave around 4:30 or 5:00. By about 2:30, “How much longer?” is the constant refrain. I try to make work phone calls from the parking lot every now and then since there is zero reception in the hospital and it feels a little crazy. Andy came with us this morning and we all went down to the cafeteria for breakfast after Sammy got hooked up Elizabeth came and picked him after a couple of hours and then took him to preschool. Sam is mostly bored though we play a lot of games and you’d think we have so much time on our hands getting him to do his homework would be no sweat. No so. It’s a struggle to say the least but he got a lot done today and his reading is really coming along. He does so well with his homework when it’s not with me. Oh well, I’ve succeeded in not having my head explode for three days now. Loren, one of his very favorite nurses, always tells him how good and patient he is with everything. He is really. It’s a long day for a six-year-old so I’ll shut up now. At the end of the day we snuggled up and counted down the minutes together talking about where we’d be if we could be anywhere in the world but the hopstial. Sam said he would have super fast shoes so he could run across water.
I used to be a normal functioning person. I used to be the mom who made Jambalaya for culture day at preschool, went all out for soccer snack with two healthy things and some home-made cookies. Now I never bring snack to soccer and I receive phone calls like the one I got on Tuesday night. “Mrs. Hutchison?” “Yes.” “Hi this is Beth from Nightingale Music.” “Oh Hi Beth.” “We missed you today in music class.” – Music class… music class… searching brain for music class. Oh yes, I took Andy to Nightingale music weeks ago and we loved it so much that I thought I might sign him up. Wait. I did actually sign him up, then the next week we had chemo, then we bounced back into the hospital, then I completely spaced that I had signed him up at all. During all this processing the only thing that nice Beth hears on the other end of the phone is a long pause. Then I say dumbly, “I signed Andy up for Music class.” “Yes,” she says nicely. “And it started today” I finish my revelation. “No, it actually started three weeks ago. We thought you were on vacation. I was just calling to tell you that we are off for Thanksgiving so you can start again on the 28th.” “Ok,” I say still stupidly. I’m sure poor Beth thinks I’m a few cards short of a full deck.
Grandma Sara is in town to help out and the kids are happy to have her here. She’s been helping out with Charlie a lot. Sweet, good Charlie is starting to grab at things. As soon as you give him a stuffed animal he grabs it and puts it in his mouth. He’s also on the verge of rolling over. Poor guy was innocently eating his stuffed moose the other morning when he fell off the couch. He was ok though, just a little shaken. He is fully laughing now and it’s great. Now that it get’s dark earlier, we’ve been going on flashlight walks after dinner. When Sammy’s not up to walking or scootering, I pop him in the jogging stroller – thank you Thomas Team for that idea. Andy loves the flashlight walks but I made the mistake of showing him a spot behind a bush where a homeless guy was sleeping once and stretched out his legs into the sidewalk right in front of Sammy and I when Sam was very little. Now Andy goes on and on about the “creepy homeless guy who stuck his legs out.” Why it occurred to me to tell that story to my almost four year-old, I have no idea. We’ve had some beautiful nights lately for flashlight walks.. The other night the boys were trying to ride in the jogging stroller at the same time. It was quite a funny scene. Andy tried sitting on Sam, Sam tried sitting on Andy, I heard a muffled, laughing, “Sam, dude, you are squishing me.” At some point they were both hanging off in some awkward position laughing their heads off.
One thing cancer did do for me is to make me treasure these moments with the kids. Would I rather Sam not have cancer? Of course. I remember last year a priest at the City of Hope came into our room on a particularly tough day and said that some people consider cancer a gift from God. Not to look a gift horse in the mouth, but God, you can have this one back. Maybe it’s like they say about boats. It’s much better to know someone who owns a boat then to actually own the boat. Maybe it’s better to know a cancer family so it can change your life, then to actually be one. So, I hope no one reading this is taking the little moments for granted.
We are home now and Andy isn’t feeling good and the nausea is starting to hit Sam. Ick.
Please pray for Penelope.
http://www3.caringbridge.org/ny/penelope
Margot
Topics: Progress Reports | Comments Off on November 16, 2006
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