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Our Comeback Kid and Smashing Watermelons
By Margot | December 8, 2009
I know that I am sorely overdue an update. Sam is still in the hospital but will be going home today. He’ll be on IV anti-biotics for a couple of more days and then oral anti-biotics. It took until about two days ago for his eye to start looking more normal.  Bright light bothered it and it hurt mightily until about three days ago. Even after his eye stopped hurting so much his leg and his head were giving him a lot of pain. He wouldn’t put any weight on his leg.  He has been off of morphine for four days now and was just getting decadron for pain for a day or so. Now, he has been totally off pain meds now for two days. We gave him vinblastine on Friday and that seems to have really helped.   The doctors didn’t want to give him anything until the infection cleared up because he needs his counts to fight it.   So on Friday when it looked much better we gave him the vinblastine. It seems to have worked wonders unless all of the pain was infection related and he just needed to get past it. Not sure how that would be for his leg.
Sam needed blood a couple of days ago as his hemoglobin dropped to 7.2.  His platelets had gotten as high as 140 but had been dropping even before we gave vinblastine. They are at 63 today so still pretty good.   Dr. Kim is going to test him for the anti-platelet antibody and see if that is what is going on. ANC is 3,000 so we are ok there. LDH is down to 1600. Funny to say down there but it had been as high as 3500 last week so have been cut in half. VMA and HVA are at 29 and 31. Frankly we were bracing ourselves for much higher than that.
Sam has been listening to us read a lot. We finished The Chamber of Secrets and are half way through The Prisoner of Azkaban.  The past couple of days he has been up for watching movies and has mostly been out in the lobby playing board games with Joe and Uncle Matt and his brothers so he is ready to go home.  Because we did Vinblastine we have to wait at least three weeks for the IV Fenretinide if we are going to do it. We have second guessed ourselves a million times but the fact is that Sam’s pain stopped the day after we did Vinblastine so I think it was the right thing to do.  We had a radiation consult yesterday and drove in the ambulance through he pouring rain to UCSD. Sam thought it was fun and we were laughing a lot on the way over.  I was telling him about Andrew who, when I asked him what he was singing in his Christmas pageant he said, “Frosty, Up on the HouseTop and some stupid song about a cradle.” Sam thought that was funny. Andy meant dreidel of course. Now that Sam’s leg is no longer hurting we are not sure about the radiation either but we marked it. Dr. Mundt and Dr. Murphy are waiting for the latest scans from Philly and then we’ll see if we move forward.
My state of mind last week was pretty much flat out panic. I think Neil and I were/are both parents on the verge of a nervous breakdown. However, now that Sam is not having any more headaches or leg pain and his eye is back to normal, LDH is dropping and c-reactive protein is down to 3.9 (it was in the 20s) and we are going home things are looking much brighter.
I kept thinking of a proverb that one of my authors told me a few weeks ago, “if you try to carry three watermelons, one of them is going to smash. I think that is a very true proverb although it is more like all three will smash with me. I was making a work call yesterday in the ambulance trying to get something finalized and not having anything in front of me to reference I was thinking how totally insane it was.  I’ve owed Andrew a date night to see Fantastic Mr. Fox and Charlie a date to the zoo going on two weeks now. I need to make Charlie some more school play dates as he is still having a hard time at drop off and told me last night. “I quit on school mom.” I haven’t done a thing about Christmas.   Our dear friends Monica and Larry picked up the shoes I was supposed to be buying for the African immigrant family that Charlie’s preschool is adopting and last night I got an email saying that one of the mom’s has had a great idea and could we buy some socks to go with the shoes.  Ack. So there it is - smashing watermelons all over the place but right next to me is a little boy very happy to be going home today and out of pain so I have no real reason to whine and complain.   My Dad is coming out this week and it will be great to have him here.
My Christmas wish of course is that this comeback is long lasting.  Thanks everyone for your help and prayers.
Margot
Topics: Progress Reports | 13 Comments »
December 8th, 2009 at 6:16 pm
The Beery’s were working the prayers hard for the last few days on the orbital cellulitis, especially Julia, who was hospitalized for several days with that herself a couple of years ago. Hurray for Sam going home!
December 8th, 2009 at 6:33 pm
Margot, A revised proverb for you: It takes a village to carry watermelons! There are many of us who would be happy to grab a pair of socks for you, help pick up stuff on your holiday list while we’re working on ours, and Grant wants to know if Andy can go see “Fantastic Mr. Fox” with us. I know you want to be everywhere and do everything- and you usually do! Only YOU can make an ambulance ride fun. But we can help with the watermelons – it helps us too. Soooo happy you guys are sprung. Love, us (p.s. maybe if Grant teaches Andy how to play dreidel, he won’t mind the stupid song so much!)
December 8th, 2009 at 7:19 pm
Glad to hear the change in direction for everything Margot.
For the record…when I need to transport three watermelons I usaully try to eat one before departure. While I get there late I do get there with a full belly….and 2 watermelons.
Hoping that things continue to go in the right direction for Sam amidst all the chaos and insanity.
pat
December 8th, 2009 at 8:54 pm
Here is an idea-
Next post just put up the chart of what boy wants what gift…and I bet that you will find Lisa bonebrake’s village at work…
Seriously, out here in the internet world all of us read and wish that there was something that we could do to help you, red and Sam….
Christmas shopping..that is the ticket..
So put up a list.
T
December 8th, 2009 at 9:21 pm
So glad to hear the comeback kid is back in business. In the meantime, your internet village is waiting for a list:)
December 8th, 2009 at 11:03 pm
I second (or third) the list. So many are praying for your boy and want to do something but feel powerless. Let us help, this is something we can do. Prayers for continued healing (and cure!)
December 9th, 2009 at 4:07 am
I think Lisa put it perfectly!! Please let us help with those watermelons….we’re happy to.
So glad you guys are back home!
December 9th, 2009 at 4:17 am
Serioulsy can you buy shoes and socks? Give me a break- stop being super woman and super man!It is hard to pick up the phone and say I need this… but it is easier to put it in am email. Reg Fant Mr fox- the girls saw it and it was awful- but maybe it is a boy movie 🙂 Be realistic- your kids are fine. Take care and I am willing to help. Do not sign up to do anything…you have too many watermelons!! Angela (Madison’s Mom)
December 9th, 2009 at 5:17 am
have friends… will shop ! Nick said he’ll even go…. which is a
shock since he doesn’t begin any shopping until Dec 23rd !
zoo, movies, games… there will always be more tomorrow !
Make a cup of tea and hot cocoa for the boys and sit home and cuddle on the couch… rent the Polar Express if they need a distraction ! 😉 Your presence is more important to them than what you are doing…
You are a fantastic mom… and dad… the kids are so lucky to have the two of you! All of us want to help carry the watermelons… please let us know if we can… anytime,
any day !!!! And thanks to all your great family and friends who lift you up and support you daily! They sound like
real “keepers” !!
Lots of love and prayers for Sam and for moments of peace for you and Neil ! That is our wish,
Xo, Colleen
December 9th, 2009 at 5:44 am
your kid is amazing!!!!!!
December 9th, 2009 at 10:19 am
The relief is enormous. I am so glad for all of you that Sam is home – there’s no place like it.
Here’s another way to carry those 3 watermelons: slice & dice into one large covered bowl… lots of little pieces for folks to pick up.
Please be gentle with yourselves. No one could be more loving or caring. Jan
December 9th, 2009 at 3:34 pm
Margot,
I want so much to say something inspirational but I am at a loss. If there is anything I can do I’m here…
Luv
Abra
December 9th, 2009 at 10:50 pm
So glad to read your update as I have been anxiously awaiting news. While I am so sorry you have been in the hospital, I am very happy you are heading home and Sam is feeling better.
Loved the watermelon analogy and can totally relate. Use the village that surrounds you to help with the watermelons, cantaloupes, honeydew melons, and any other large, awkward, unexpected fruits you are required to carry (I know, easier said than done.)
Sending lots of positive thoughts, prayers, and wishes your way. Jack and I are about half-way through Chamber of Secrets ourselves and I plan to keep reading through his MIBG on Friday so I avoid looking and having a nervous breakdown.
With hope and friendship,
Sarah (John, Annie and Jack, too!)