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January 19, 2006
By Margot | January 19, 2006
Eeks, sorry for the long silence, we have been making some changes to our website (as you can see from the missing images) and we just got it back so I could update it.
Happy January 19th! One year ago today Sammy was diagnosed with cancer. I can’t believe how far we’ve come, I look back on my old handwritten journals a few days after diagnosis and I could hardly bring myself to write the word “cancer.” This day last year was easily the worst day of our lives and Neil and I both remember every detail of the day as if it were yesterday. I was thinking this morning about after our pediatrician gave us the news and Neil had gone home to get some things for us to stay at the hospital and to make phone calls and arrangements for Andy. I had been holding it together somewhat for Sammy’s sake in the hospital room and Sam asked me to go get him a drink. I went to the vending machine and completely lost it. I was standing there sobbing trying to put the same dollar in the machine and it kept spitting it back out at me. A nice older man came up to me and asked if he could help me. I’m pretty sure he meant help me with my dollar but I poured out our whole story to him and this poor, kind ambushed man hugged me and told me it would be ok, there were good doctors there and they would take care of Sammy. I remember telling him “it’s not ok, it’s never going to be ok again, he’s only four.” Well, my little four year-old taught me more about life, strength, courage, and resilience in this past year than anyone has ever or will ever teach me again. Once, on the way to the hospital last year when he was looking serious and very quiet, I thought, “Oh he’s thinking about cancer and how hard this is on his him and why does he have to go through it.” I said “What are you thinking buddy?” He said, “I’m thinking about which Power Ranger is the fastest and which one is the strongest.” Oh. Back to the man at the vending machine, if I could find him or even knew his name, I would tell him we are ok. In fact we are much better than ok and we appreciate our two amazing children every day. And even though, just yesterday I was screaming at them to “STOP IT!” while they were mercilessly whacking each other, I remind myself all the time to brand into my brain how it feels to hug their little bodies and to watch them sleep.
Sammy had clean scans the first week of January and it was a great way to start off the new year. He was a champ through the entire week of being dragged from scan to scan. He had an IV in his arm all week and didn’t complain about it at all. He’s wearing his hearing aids now and we’ve had them fixed so they actually help him hear. He doesn’t always make it through the whole day with them in, but does go a good while and he actually asked to put them in the other day when we were having “West Wing Night” (usually consists of Neil and I trying to watch West Wing while the kids run back and forth jumping over us (and sometimes onto us) in their hour long run and long jump competition. But Sammy wanted to hear what was going on in this one and asked for his hearing aids – a first.
Neil has taught Sam how to swallow his accutane pills so he doesn’t have to chew them up and taste them. He pops them now with no problem. Neil and I take vitamins with him while he does it and he beats us every time in swallowing the pills.
Dr. Bolotin said she wants us to wait out flu season before sending him to school. I guess it has been a nasty flu season and it makes sense but it’s hard to wait. I calculated out his accutane schedule and if he can start on February 22, he’ll have a full two weeks off accutane to start. Hopefully it’s close enough to March that she’ll be ok with the date. The CDC site says the flu season peaked last week so should start packing up and leaving. We added an extra day of his home teacher and have been trying to work with him more ourselves to get him ready to go.
We signed Andy up for karate too this week as he’ll be turning three next week. He’s so excited to get a karate suit. I don’t know that he’ll actually pay attention through a whole lesson without having to explore the weaponry in the back of the dojo a few times but we’ll see how he does. We are having his birthday party at the place we have his tumbling class and he wants a Ninja turtle to come so I’ve booked Mikey. He keeps telling everyone that “Mikey” is coming to his birthday party. Sammy has used the opportunity to let me know the long list of things he wants for his birthday (which isn’t until July, by the way) at the end of his list he said, “and I want a Power Ranger costume.” I said, “But buddy you have a Power Ranger costume, remember you were a Power Ranger for Halloween?” He answers matter of factly, ” But mom, that’s a Halloween costume, I need an every day costume.” Of course.
We have a blood check in LA today and I’ll ask Dr. Bolotin about the date for school. I think she thinks I’m a kook because I keep harping on school.
Lastly, we could not have made it through this past very hard year without the help and love and support of all of our friends, family, colleagues and wonderful doctors and nurses. Thank you all so much.
Topics: Progress Reports | Comments Off on January 19, 2006
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