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“Why Does Sam Get All the Lucky Stuff?”
By Margot | September 23, 2009
We are in the hospital with red pee. Sam has been peeing blood continually since Saturday and though we called in on Sunday as soon as they saw his urine sample Monday morning we were admitted.  He played soccer on Saturday and probably was dehydrated from a week at school not drinking enough and then a hot soccer game. He got blood and platelets on Monday. His LDH was 667 (or something in that range) so it’s creeping up a bit. Yuck. Anyway, he’s otherwise feeling fine (except for throwing up some yesterday after eating a hospital cafeteria lunch) and wants desperately to be back in school. Neil spent Monday night with him and I came in yesterday to tears because he did not want to stay another night. The good part about it is that we’ve got the penthouse suite. They put us in the old playroom after initially putting us in with a roommate who had a family that must have been chain smokers because even the nurses and Joanne, our parent liason were overwhelmed by the smell of cigarettes after walking in there.  So the old playroom is huge big room and since Sam doesn’t have a fever or anything the boys have been in the actual new playroom every night from six to eight playing air hockey tournaments with the other kids and doing art projects. We are almost always here for fever or some other thing that they don’t allow us in the playroom for so this has been nice for the kids on the scale of hospital visits. Meredith brought up Luke yesterday and he and Sam played Wii baseball and had a lot of laughs.
Last night as I was walking Neil and Andrew and Charlie to the car before they went home. Neil said to Andy, “Hey do you want to see a picture of your brother with a penguin?” SeaWorld came to the hospital yesterday and Sam got to pet a penguin. Andy looked at the picture and said, “Why does Sam get all the lucky stuff?” Neil said “because he gets all the unlucky stuff.” I said, “Andy, Sam would trade all this lucky stuff in a minute not to have to be in the hospital.”  That stopped Andy in his tracks and he thought about and said, “He would? You mean not to have the bad cells in his body?’ And I said yes. My poor little boys who have to grow up so fast. I don’t think Andy had ever thought of it like that and frankly I don’t know that Sam thinks of it like that. I do know that all he wants to do is get back to school and play kickball and recess ( I think it has replaced four square this year). He was so so bummed that he missed PE yesterday. I am hyperventilating that he’s falling behind in school already but Mrs. O’Donavan has been great and sent home some work with Andy and gave me Sam’s math test to do here. She said that because he missed the whole review day I could help him a bit with it.   He did pretty well on his own though I did help him some.
Neil got Andy off to school fine this morning and Elizabeth is home with Charlie. Charlie’s second and third days of preschool went well because Mom attended with him the whole time.   Though I was trying to counsel myself that this is great time for me to spend with Charlie, I have to say that three hours of preschool is a long time for Mom. ;-) He ventured a little further from me yesterday but panicked when he couldn’t see me.
Please think good clear pee/get out of the hospital thoughts and prayers for Sam. He so wants to be out of here.  The urolgist saw him yesterday and was mostly worried about clots and said hydration should help.  In the past hydration and platelets have done the trick pretty quickly. This is the longest continual time he’s gone but this morning looked a little better. Two minutes ago a team of urology residents came in and wanted to wake Sam up to examine him and I said, “No, the urologist examined him yesterday.” One of them was a little overzealous and was asking me all about MIBG therapy and what it is and I mentioned something about Vermont and she said, “Well I need to know why you’ve been to so many places, you’ve mentioned Vermont and Philadelphia.” I was tempted to say, “Oh we just enjoy traveling so much that we try out different hospitals.”  I didn’t though, I was polite. Then she said, “And Dad? Is he in the picture?” I was thinking, “Who are you, the social worker, I thought you were a urology resident?”  Anyway, I ushered them out shortly thereafter. I try to be understanding about the whole teaching hospital idea but starting from square one with the residents every time drives me a little crazy.
Margot
Topics: Progress Reports | 16 Comments »
September 23rd, 2009 at 5:26 pm
You and Neil always seem to have the right words and actions for your boys. It’s why they’re all happy dudes. Hang in there. Mack and I plan to bring you a diet coke and Sam some buddy time after school. We’re thinking good thoughts for clear pee.
Love, Lisa
September 23rd, 2009 at 5:48 pm
Hi Margot and Neil,
I’m sending positive thoughts and prayers for clear pee, home and return to school for Sam. Margot I know what you mean about the Residents. I’m starting to carry a history sheet I typed up with me and when they come in I just hand it to them. I try to keep my conversations with them as short as I can this way my blood pressure also stays as low as possible.
Thinking of you all
Lisa
September 23rd, 2009 at 6:00 pm
Pee (clear) like a racehorse Sam! Hope you get home soon.
September 23rd, 2009 at 7:49 pm
Margot,
I also hated dealing with so many residents. Like you I told myself that they were learning but it always bothered me that they were “practicing” with my kid. I’m not worried about Sam though, in fact I’m a little worried about the residents with you in Sam’s corner 🙂 We will be praying for clear pee…
Luv
Abra
September 23rd, 2009 at 8:40 pm
>>>>starting from square one with the residents every time drives me a little crazy
You were a LOT more polite than I would be (and *have* been when I am in the hospital). I don’t suffer fools gladly at any time and officious fools make my blood boil.
I’m saying lots of prayers and sending good thoughts your way.
–Sherry
September 23rd, 2009 at 10:05 pm
I agree with the above posts. You are too nice to the residents, they should READ Sams chart first, THEN maybe a few questions. BTW. My response to ” I need to know why he has been so many places” would have been….,”We are circus people. Sam runs the bearded lady booth and I am a lion tamer.”~ nuff said!
September 23rd, 2009 at 10:08 pm
Leslie, Julia, Jack and I are praying every day for all of you, and Jack is usually the first to pray for Sam — we’ll focus on clearing up and getting out when we pray tonight. We love you guys.
Cousin Clay and Louisiana familia
September 23rd, 2009 at 11:00 pm
margs and kids and my dear brother…
The truth wouldnt of hurt..either.
We are in Philly and Vermont and Los Angeles because we are looking for someone with honest to goodness passion; looking for someone who is intellectually curious enough to find and destroy what is destroying my child’s childhood. Are you that person or are you going to make a career out of the medicine field instead of making it a practice?
I sit here typing thinking that Sam is doing ok and then to click on this…Sam, warrior up..
Redman.
Tom
September 24th, 2009 at 12:21 am
Hey Marg & Neil,
Adding lots of trans-pacific clear pee vibes to the mix.I’ll also add my admiration for your patience with the boneheaded questions from the ridiculous resident Marg – I think the sarcasm option would have been fine too.
Lots of Love from all of us.
Paul
PS – Loved seeing the post from the cousins in New Orleans!
September 24th, 2009 at 2:53 am
You are very patient and too polite !
Can you put a sign on the door that reads ” closed to all residents, we need our sleep ! ” 😉
God love Andy… such a confusing time for him also !
God bless Sam and glad to hear his buddies and brothers are keeping him company!
Remind yourself that Charlie will adapt… and then you’ll look back and laugh… at why was he so shy and intimidated by preschool those first few weeks? Good Luck !
Love and good thoughts,
Colleen and gang
September 24th, 2009 at 2:54 am
Hang in there- you guys are such great parents! Angela (Madison’s Mom)
September 24th, 2009 at 3:09 am
Other than thinking good clear pee thoughts, I am shaking my head with frustrated understanding about the residents. Oh, don’t we all know. I usually try to be polite too, but there comes a time when that just has to end. If she comes in again with more idiotic questions, let her have it and please report to the rest of us who are cheering you on and backing you up!!
With friendship,
Sarah
September 24th, 2009 at 12:57 pm
Margot,
I’m sorry to hear Sam’s having a rough spot that requires the hospital stay. I’ll think the good thoughts for you guys to get out ASAP. About the residents, yea, they can be quite maddening.
When Lindsey was taking high dose chemo and continuously vomiting despite the anti-emetic drugs, the resident asked us what drugs we thought they should try. We told told her that we’re not qualified and by her asking us, we weren’t comfortable about her qualifications either. I then asked her to go and find an attending doctor to come in and consult on the matter.
Best wishes,
Doug
September 24th, 2009 at 11:09 pm
I’m afraid Melissa might not have been so polite had she been asked the same question – bless you Margot for being so nice even in the face of such a crazy situation 🙂 I think its a good sign that Andy doesn’t really log the bad things that Sam has to go through… it wouldn’t help much and would only stress him out. Leave that to his parents (and any other parent following Sam’s story). Hoping, praying and sacrificing live chickens in hopes that Sam’s pee is nice and clear ASAP.
Andy, Melissa, Hannah, ^^Max^^ and Nicky
September 26th, 2009 at 3:28 pm
I knew the blog title was Andy before i read it. i have got to meet my fellow tom brady fan some day! i remember neil telling me a story a while ago about not wanting sam to think that there was anything “wrong” with him. So its a good testament to you guys that none of your kids think there is anything “wrong”. Uggg sounds like will is in the midst of needing similar conversations. i dont know how you guys do it.
September 27th, 2009 at 3:37 pm
The lack of continuity among the residents reminds me of my elderly neighbor several years ago. Nice guy, but no short term memory. Every time he saw me, every week or so, he’s ask “Are you my new neighbor?” and then tell me his life’s story. Nice man, so I never told him he was repeating. Your situation is different though. They really should know better. Nevertheless, it probably does no harm, just maddening. Anyway, I hear praying for clear pee is more effective when accompanied by the sacrifice of an obnoxious urology resident 🙂