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Hangin’ with Sam
By Margot | July 22, 2009
Sam and Andy playing Wii -taken on my cell
We are on day three of Topo/Cytox. So far not too many ill effects. Neil is bringing Sam in around 7:30 in the morning and I’ve been coming in around 9:15 after dropping off Andy and then Neil goes to work. After the first day getting everything started and leaving at 5:30, yesterday we got at out of here at 3pm and today are shooting for 2:30. Monday we did some homework and played Monopoly and games but things have deteriorated from there as we brought the Wii the last couple of days. Yesterday Mac and Grant came and played. Lisa brought cupcakes and smiles and I ran out and got some work done for an hour or so.  Today Sam is playing Wii with eight year old Esteban, the brother of the little boy in the bed next to us. It cracks me up how quickly boys bond over video games. They are yelling, “Aw, you got me!” and “That guy has a really good super move.” He and I had an agreement that he would do some homework type stuff with me at 11 but he’s having so much fun I don’t have the heart. So we’ll have to chalk up today to a total brain drain. The giggle is worth it. Yesterday was funny because Sam was playing Lego Batman and called up Andrew at home and they had this long conversation about how to beat the level.   You would think Andrew was talking him through brain surgery. I cracked up. Sam got deaccessed yesterday so he could do tennis and go swimming. He had the best time at his tennis lesson and it’s good because he doesn’t have to run or anything. Coach Joe just lets him hit and it’s not too stenuous.   Then Andrew had basketball practice (it was very hot) and afterwards we all went swimming. Andrew’s day yesterday was soccer camp from 9-1, tennis from 4-5, basketball from 5-6 and then swimming.   What kind of crazy overscheduling mother does he have?  Luckily he has lots of energy.  Charlie has been dressing up in total soccer uniforms every day because that is what Andy’s wearing for camp. It’s the cutest thing. He fits in Sam’s old four year old jersey and the cleats Sam and Andy wore at 4.  Andy is coming up after soccer to visit with Sam. Today Sam wants to get deaccessed again today for basketball practice but I’m not sure what to do about that.  Now that we have made the big decision on treatment we still have all the little paper cut type decisions like these that keep me up at night along with the elephant in the room. You’ll see after reading below why the basketball decision today particularly stings.  Travel decisions are on hold because Diane at CHOP is working on arranging some things at CHLA -maybe stem cell infusion there. So, we’ll see what happens on that front.
VMA/HVA today was back up to 51 HVA and 43 (I think) VMA. Sam told Neil that his leg hurt this morning in the cafeteria and he said it hurt last night. This is not good news the third day into chemo. In the past when we’ve started chemo any pain has gone away. Now, three days in, Sam is starting to have leg pain. He hasn’t mentioned to me at all and is happy here playing so it’s not debilitating pain. We are worried that we are going to race the disease to get to the Ultratrace treatment. We have until the infusion on August 25th. That’s five weeks. The VMA/HVA numbers are from last Friday which would have been our chemo week had we stayed on a three week schedule and not been in Philly.  So if this chemo works they may drop again and we’ll be ok.    We may be ok anyway if the Ultratrace is the ticket.   Racing hearts and worried heads here in the clinic today. But I won’t be doctor neg. Sam is here laughing next to me and he deserves all our hope and determination. Â
Margot
Topics: Progress Reports | 13 Comments »
July 22nd, 2009 at 8:57 pm
margs-yes, Sam deserves all our hope and determination..
Quite a beautiful post – sending love from MI
July 22nd, 2009 at 10:06 pm
Margot,
Lots of hope coming you way from all of us. I wish I had some words of wisdom to make that worry go away but since I don’t please know that we are praying extra hard these days!!! Please email me and let me know some fun little things we can get the boys to make your hectic schedule a little easier. Shelby and I would love to do some little guy shopping 🙂
With Hope
Abra McKean
July 23rd, 2009 at 1:26 am
Glad to see him smiling. Saying a prayer for you! Angela (Madison’s Mom)
July 23rd, 2009 at 12:43 pm
Saying a prayer for you guys from Michigan! When did you ad this?
July 23rd, 2009 at 1:23 pm
Hey Guys,
Definitely thinking of you all the time, so are the kids. Don’t know if there is anything more to say than that; the boys are beautiful…and hilarious.
Love Paul & Kaz
July 23rd, 2009 at 7:02 pm
Neil and Margot,
Sending prayers, love, hopes, wishes and all the positive energy I can to Sam and all of you. Great picture, Sam’s got a fabulous smile. Keep moving forward.
Lifting Sam up tonight and every night,
Lisa Riniolo
July 24th, 2009 at 5:07 am
Just read about Sam on H Talk & wanted to let you know I’ll be praying for him along with a lot of the other guy’s. Never give up on God!
Billy
July 24th, 2009 at 5:54 am
Neil and Margo – I want you to know I think of your family all the time. (my) Andy told me to take Hannah down to the hosp to entertain Sam, but I just can’t go in their yet. It sounds like you’ve really got things planned out well. Don’t forget to take advantage of the here and now. Make sure Sam keeps taking pictures!
July 24th, 2009 at 3:28 pm
Hey Sam – I hope you and I are in the same class next year. Hope you feel better. Natalie Storch age 8
July 27th, 2009 at 1:18 am
Thinking of you and keeping you in our prayers. Your family never ceases to amaze me. Sending good vibes and only the best of thoughts your way. Your family is just the best and we only hope for the best for you.
July 27th, 2009 at 1:35 pm
I hope you are really carrying out big plans this week, and that you can stay away from clinic as much as possible. Take advantage of summer. Do crazy things. Rest. Enjoy each other. Know that we are thinking of you all (or as folks around here prefer ya’ll).
VB
July 28th, 2009 at 3:29 am
Praying for you guys. My heart knows what you are feeling. Just wanted you to know that you are continually thought of.
Hugs,
Lexie
http://www.caringbridge.org/visit/cadenledbetter
July 29th, 2009 at 4:44 pm
Thanks for the detailed updates. Love to the boys and energy to you and Neil. Blessings, Bev :>)