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What We’ve Been Up To
By Margot | July 31, 2008
Neil and boys at the Nighttime zoo
All of us saying goodbye to John and Sock at the airport
John, Sam and Neil at Paradise Point Hotel
Everyone is doing well. Sam has great energy and has been eating well. His weight has stayed steady at 24.4 kilos (most he’s ever weighed).Â
We had a great time last week at Artie and Jen’s wedding. Congratulations Artie and Jen! Got to see all the old gang (great to see Chris and Diane in town with Christopher and Matt) and it was a beautiful ceremony.  Neil left a little early to pick up Sam’s chemo for Saturday and I stayed until I had to coach basketball. I pulled it off even after a few glasses of wine (really that Enjoli lady has nothing on me - ha ha).  The ref only had to tell me which way we were going twice.
Last Saturday John London and Scott (the boys call him “Sock”) Kennedy came into town and spent a few days. The boys loved both of them and had a great time playing basketball and tackling them and hanging out at their hotel, swimming, feeding the ducks, etc.  It was wonderful for the boys and me to finally get to meet John who has meant so much to Neil and our family throughout the past two years.  He was just great with the boys.  The beautiful Penelope had a wonderful dad.  The boys knew Scott from the MagicWater meeting earlier in the Spring when they nicknamed him “Sock.” They gravitated right to him when he walked in the door and picked up right where they left off wrestling with him. Scott lost his son Hazen to nb almost two years ago. I know I don’t have to reiterate how unfair and awful and sucky this disease is but there are days when I want to scream it from the rooftops.
We met with Dr. Willert this week about changing up Sam’s chemo. He will do the Irrino/Temodar for the three week schedule we are on and then do a cycle with Temodar, accutane, and three or four other things showing promise with some kids.  The theory is to keep the cancer guessing and not get it too used one thing all the while keeping it low dose. Dr. Willert likes the idea. VMA is at 10 last week (yay) HVA was 18 (wish it were lower). We don’t have this week’s results back yet.
Tuesday we did the nighttime zoo and the big cats were out and about. Charlie is the perfect zoo age and could have stayed at each animal forever.  He talked to an orangutan who came right up to the glass and said “He’s talkin to me, mom and then he put his face right up to the glass.  We went swimming with the Bonebrake boys today and are working on an August vacation and some camps. Stay tuned. Friday is our last basketball game so we’ll get some pics.    The boys are starting to talk about school and Sam asked when we will find out who his teacher will be today. He’s doing really well with vision therapy and it’s amazing to see how much progress he’s made in just five sessions. His eyes don’t jump when he’s focussing on things. I actually never notice they jumped until we started doing the exercises.  He loves vision therapy and he works really hard at it as he does most things.
Neil and I will be married ten years tomorrow and Neil’s birthday is on Saturday.  No big plans as of yet but we may do something spontaneous. Â
More soon.
Margot
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Topics: Progress Reports | 3 Comments »
August 1st, 2008 at 1:17 am
Hey Margo! I am so happy to hear that Sam is doing great. I love the picture of the boys at the zoo. It looks like they had a lot of fun. I can’t believe that summer is almost over. It seems like it just started!
Happy Anniversary to you and Neil. Nick and I celebrated our 10 year anniversary on July 11th!
Also..Happy Birthday Neil. I wish you a very happy, healthy year for you and your family…especially Sam 🙂
Love, Heather (Kate Sessions)
August 1st, 2008 at 2:47 pm
red and marg’s – what a beautiful set of pictures..I can not believe how similar Charlie looks like Neil at his age (the hair!)…and how focused you and Red are on giving the kids such a well rounded experience..I am not surprised to hear that Sam is gaining weight…he is going to beat this…congratulations on the ten years…and Red-a great year for you.
August 3rd, 2008 at 4:46 am
Happy Anniversary Neil and Margot! Happy Birthday Neil!
My favorite picture of Reggie happens to be a photo of him I took with one of the centerpieces from your reception tables. They were gorgeous bouquets in a big round glass bowl. Since Reggie doesn’t photograph well I got the idea to put him on the counter with the bouquet. I always think of your wedding when I look at the picture (it is actually a giant portrait I had made and framed).