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Generally Miserable
By Margot | June 28, 2009
We are on day three of high fevers with no counts. The doctors want to do a CT scan to make sure we aren’t missing anything and add an anti-fungal. ANC was zero today and platelets were 63 -right after yesterday’s infusion so he’s not making many platelets.   His stomach hurts and last night right at shift change he started getting painful acid reflux which has not gone away. We’ve done IV zantac but are moving up to something stronger soon.  The look of misery on Sam’s face is pitiful and added to that he’s losing his hair which he just noticed all over his pillow. On top of all that they just came in to let us know they are going to put in an IV for the CT and he just threw up a bunch of green bile. I don’t know how many more indignities and prodding he can take.  As you can imagine he is miserable mad guy right now. Understandably so, I I’d be breathing fire myself. Â
On a good note Mac and Lisa stopped by with bagels and coffee this morning and he perked up quite a bit though didn’t eat anything – his first smile of the morning was when we were playing the Mad Libs that Mallory dropped by yesterday.  Thank you thank you Mallory and thank you for running to the store for TUMs. We also started on Matilda last night that you brought.  Anyway, after Lisa and Mac left Sam started feeling pretty miserable.   Â
He and I had a nice quiet night last night after everyone left. I love reading to Sam here. We’ve been through so many books while we’ve been  here and I love his little laugh at Uncle Feather in Fudge calling people a Turkey Brain. While we were reading last night he said, “this book is making me hungry.” So I ran to the fridge and warmed up some salmon which he ate -the only other thing he ate besides two small blueberry muffins yesterday. Unfortunately an hour after he ate he started getting acid reflux and it bothered him all night. At one point in the middle of the night during one of his high fevers when I had to leave him with only a sheet he sleepily said, “it’s not fair that Andrew gets to sleep in a nice warm bed while I’m stuck in here with only a sheet.”   I told him when Andrew was sick with his high fever he had to only wear a sheet too. “Oh.” Sam said. That seemed to make him feel better but maybe I should have said “I know it’s not fair. None of this is fair.”  If cancer were a bullet we parents would dive in front of it but we can’t so instead we have to hone our psychology skills. I’m afraid mine not be up to par. Sam is watching the Brazil/US soccer final right now and looking a little better. It has caught his interest at least. Neil went to shave his head and took Andy and Charlie with him for haircuts.
It’s looking like the meds – zofran and zantac might be kicking in a bit as his miserable face is easing a bit and he’s glued to soccer.
More soon with hopefully a better, more cheery update. Thanks for all the book suggestions there were many books suggested we haven’t red yet. Last note LDH was 456 today lowest in months.
Margot
Topics: Progress Reports | 11 Comments »
June 28th, 2009 at 9:16 pm
Has he read freckle juice? I remember that being funny.
June 29th, 2009 at 1:27 am
Man oh Man I know the feeling of misery… NOW imagine Nick chugging Avemar during that scene… It didn’t happen, couldn’t do it after Cyclo/topo/vincrstine. We kept a hefty dose of iv ativan going and we did a pre med of zophran BEFORE his antibiotic drips, that helped the nausea. It just plain sucks… I am rooting for counts to rise and fevers to fall and tumor markers to continue to fall…. OUr nerves are starting up for CHOP next week, I know you’ll be interested in our results. Gavin Lindberg is getting two very different treatment suggestions from Sloan and CHOP after Evan’s new relapse… I hope we have agreement on plan and it is an easily managed one… you’ll be right behind I know… ps platelets 60 after transfusion isn’t so bad is it?????
June 29th, 2009 at 2:24 am
Hang on to the LDH as a good sign…
Focus on the positive..
Thinking and feeling for you.
June 29th, 2009 at 4:11 am
Hey Margot…. I’ve been keeping up to date on Sam thru your blog but wanted you to know that Sam and your whole family are in our thoughts and prayers. It’s been a while since we’ve seen you but I think of you often and also think you are an amazing mom and woman. Your family is super lucky to have you. Best wishes to Sam and all of you……
Julie MacDonald
June 29th, 2009 at 5:01 am
Praying for Sam, and for all of you!
Have you tried coconut water (in the produce section of the supermarket)? It is very high in nutrition, often used as an electrolyte replacement by athletes. Historically, it was used to transfuse soldiers during war times, as it was so close in amino acids and electrolytes as human blood. Also naturally reduces fever, eases the stomach also. It was very helpful for my little boy during hard chemo days, as well as fevers. A natural antifungal also. Can’t hurt, so I thought I’d mention it.
Has he read the “Encyclopedia Brown” books? My boys have all loved them.
June 29th, 2009 at 5:10 am
Hi Margot! You might give Daniel Pinkwater’s books a try. They always made my kids laugh out loud – both children and adults can appreciate them on different levels. I haven’t read them all, but haven’t found a bad one yet, so whatever the library has is worth trying.
Gail
June 29th, 2009 at 10:08 am
Thinking of you all.
Tell Sam that Marty said Matilda is a great book,
Love you
June 29th, 2009 at 1:33 pm
Sotty this is not fair! Thinking of you and wishing for Sam to feel better soon! Angela (Madison’s Mom)
June 29th, 2009 at 2:44 pm
Hoping that you are sprung from that joint soon! May the rest of the summer be spent at home where you belong. BTW, Were ready for friday mornings at the park – whenever you guys are. Maybe Colleen can walk the boys over too. That would be fun!
June 29th, 2009 at 4:23 pm
I wish I had some books to suggest, but we are only reading toddler books here.
But we are thinking of you and praying for no fevers and that you can get out of the hospital!
June 30th, 2009 at 6:20 am
Hi, tell Sammy he’s my hero. I think of him and pray for him daily. A smile goes a mile–take care of yourself too! Love, Bev