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Aloha!!
By Margot | January 25, 2009
We are off to Hawaii tomorrow.  We are all excited.  Sorry not to have updated in a few days.  I always think of my grandmother, Owie, who used to tell stories of my Dad as a navy pilot when he would call her the night before he had to fly a tough, dangerous maneuver like landing on an air craft carrier. She would worry all night and then he would never call to tell her how it turned out. Colleen gently reminded me today that I need to post as people are calling her to see how Sam is doing.  Sam is on day four of no pain pill. He played in his basketball game this morning and did very well. He was really aggressive and even had a spin dribble move that would have made Jordan jealous. I sometimes think his theme song should be that baseball song “Put me in Coach.” Their team, The Wildcats, lost but they all played well, they just couldn’t get the shots to fall. Sam has had good energy and been in good spirits, though he and I have struggled a bit with homework this week-writing assignments are tough. We can only assume that he is responding to the velcade/topo/cytox combination. We can only assume that because two weeks worth of VMA/HVA numbers are still pending. I’m guessing some ball was dropped somewhere with the numbers from two weeks ago but they were the Monday we started chemo so really wouldn’t tell us anything anyway.  This week’s numbers are not back yet so we will go to Hawaii with an excited, energetic boy and a lot of hope.Â
Good thing for the hope that we are responding too, because it may be a while before we do 3f8’s. The only type available at the moment are the hot antibodies. There should be more availability in the not too distant future -ha ha I used those words on purpose. Really the 3f8’s work better with little to no disease so we need to clean up Sam’s bones some beforehand anyway. The plan is to do another round of what we just did as soon as we get back and radiate some of the new spots and then scan again shortly thereafter and see where we are.
Angela, the child-life specialist from Children’s Hospital came to Sam’s class on Thursday morning. She was wonderful, so good with the kids, very informative in an upbeat, positive fashion and she deftly handled some pretty tough questions, i.e., “You said the chemo and radiation make the cancer go away but I knew a boy with a brain tumor and he died?”  Ack. She said very gently that there are many different types of cancer and many different types of treatment and quickly moved on. I pulled Andy from his kindergarten class so he could hear be there, I thought it might help him understand too. He was so cute. Angela asked “How do you think we can help Sam?” After a few kids answered that we could give him chemo or we can give him blood and she explained that you have to be older to give blood and the doctors give the chemo, she found Andy with his hand up who said, “We can make sure he has fun”- the answer I think she was looking for.  Andy also told her that he knew all about what a port was because “Sam is my brother.”  Sam had a huge smile on his face the whole time she was there. She showed the kids pictures of the hospital, a bed, an IV pole, the clinic and she brought a doll and demonstrated the port and how it worked.  All of it is so familiar to Sam and such a big part of his life that I think it was good for him that the other kids got to see it.   I had to pull him out for a radiation appointment – poor scheduling on my part- and he said he was bummed he missed the movie. Angela showed a Charlie Brown movie about a boy with cancer who loses his hair.  I told Sam I’d ask her for it the next time we’re in the hosptial.  All of the kids made cards for him and the teachers wrote really nice cards as well.  They were waiting for him on his desk when he got back from radiation and we read through them all the minute he got home.  Mrs. Abbuhl and his class even gave him $40 dollars of fun money to spend in Hawaii. Holy Cow!!   We were just blown away at how nice and supportive everyone has been. We are so so lucky with our little school. Mrs. Divicaris gave us her whole book on Maui complete with every brochure for snorkeling, luaus,etc. Â
Andy will turn six while we are there. We are going to try and go to a luau on his actual birthday and we’ll have a party at Pump it Up! when we get back. He was amazing in his basketball game on Friday night. He’s a dribbling phenom if I do say so myself (as his mother and coach I’m only slightly biased;-)). He was great on defense and made a basket.  He went on a playdate to Beau’s house today and Neil asked him at dinner, “So did you tease Maggie?” (Beau’s older sister)  Andy got a huge smile on his face and said “A course.”    He is doing great in school and is still “the mayor” everywhere he goes. As funny and mischievous as he can be, sometimes he carries the weight of the world on his shoulders.   I remember my Uncle Don telling me, “You know Andy has borne a lot of the brunt of all this.”  We all know Sam has borne most of the brunt of this but Andy has carried his fair share for sure. We are so proud of our almost six year-old.
Charlie man is funny as can be and an absolute joy.  He certainly has formed his two year-old opinions and will let you know about them. He told me the a few days ago, “Mom, I’m not cute, I’m awesome.” I just tried the mother of the year trick of driving him to sleep so I could keep packing and though he went without a nap today (I know you are cringing Elizabeth) he talked to me the whole time and finally made me laugh out loud when after twenty minutes of driving said, “Mom where _is_ your errand?”Â
A big thank you to the McKeans who sent a package for the boys tonight complete with bakugans, superheroes and a football field goal kicker that the boys have been using all night to shoot the mini-football around the house.  The awesome 12 year-old soccer playing Shelby sent a wonderful letter to Sam. Thank you so much.  Sam will write you back. And Abra’s kind letter choked up both Neil and me.  Thank you McKeans, you are wonderful.
 So, we will check back in when we return. Neil says if you need him you can find him at the poolside bar. He’s imagining him self as Steve McGarret in Hawaii Five’O I think.  I let you know if he puts any bad guys in prison while we’re there. :-).
MargotÂ
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Topics: Progress Reports | 4 Comments »
January 25th, 2009 at 8:21 pm
I’m so glad you are finally getting to go!!! Have a WONDERFUL time!!!! Drink an umbrella drink for me!! (Happy 10th belatedly (-:)
January 25th, 2009 at 8:59 pm
Have a BLAST Hutchinson’s!!!! I’m so jealous it’s like 30 degress here in Washington today.
With Hope
Abra
January 25th, 2009 at 9:10 pm
Pomaika`i with the adventure in Hawaii and Hau`oli la Hanau to Andy.
VB
January 26th, 2009 at 5:14 pm
So glad that you’re getting to Hawaii. I hope you can push aside the worries and that the boys will have a wonderful time, full of adventures. Each day, I hope the present will be the gift. Thinking of all of you, Jan