Dear American Cancer Society

Dear American Cancer Society-

Thank you for sending a reimbursement check to help us with gas costs as we travel to and from the weekly appointments at the clinic/hospital. I'm thankful for those who have provided funds to ease our burden.

Sincerely,
Jennifer - Mother of a son fighting Embryonal Rhabdomyosarcoma

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The American Cancer Society has a program that allows up to $400 annual reimbursement for miles traveled for cancer treatment.

A Look Around Unit 4800

I still haven't posted all the pics from Jacob's first hospital stay. Snapped a few more. Thought you should have a glimpse of where Jacob is and where I've been for the past 24 hours.

Welcome Home! This is our shared room. Jacob is in bed 1. During our first hospital visit, Jacob was in bed 2 (until he was moved into isolation).



Jacob gets the hospital bed (obviously). The brown chair rocks and reclines slightly. I like that it's padded. Purple chair pulls out in a long narrow bed that even Jon can fit on. That doesn't make it comfortable - just long & available.


There's a little white board where the nurse on shift puts her name.


When Jacob is getting treatments, they keep stacking these little beeping boxes on top of each other. The one on top pushes meds into his line.


When Jacob is not in the playroom but is still feeling well, he likes to play his Nintendo DS or watch Nickelodeon. Notice the tray of untouched food on the table.


Jacob is much more relaxed when he is hanging out in the playroom (harder to take pictures because it's their policy that you can't include other patients in the photo). He was playing Super Mario Smash Brothers Brawl - a totally violent teenager game. He was having a great time with one of the volunteers. I think Jacob even talked to him. I'm not a fan of violent games, but he's fighting cancer. Can it really hurt for him to wiggle a remote control and fight a video game character too?

Make-a-Wish

Jon talked with Dr. Matthias more today about Jacob's nighttime drama. He has always been a wild sleeper, but the thrashing and grinding of teeth has been bumped up. We attribute this to the emotional trauma that Jacob is trying to work out in his sleep. He wakes up in the night - sometimes because of regression to bed wetting (he's too tired to get himself up until he's wet & freezing). He is also acting frightened. He comes to sleep on our bedroom floor routinely - sometimes he tries to crawl into bed with us. It's risky sleeping next to this boy because he kicks. Sometimes he sleep walks to other spots in the house. I found him sleeping on the landing between the stairs recently. Anyway, they talked about the possibility of going to Cancer Camp. Jacob needs a chance to get out and do something more normal and more fun.

Later at the hospital the social worker was sent to Jacob's room to discuss the possibilities of making a wish. He kind of lit up at some of the possibilities. I thought that wishes were for when you reached the end of treatment or when you reached the end of the journey, but I guess wishes are granted at different times. When it came right down to it, when asked what he'd wish for Jacob said, "I wish I didn't have cancer."

I asked Jon if they were able to do THAT wish. Because it's what I wish too.

Broken in Eight Hundred Pieces

It's nice that you all think I'm so strong and capable. I only give the illusion that we are keeping it all together. We are trying. We have managed to keep all the pieces - trouble is that they are scattered all over the floor in 800 (apparently a favorite number of mine - I use it all the time when I exaggerate) broken pieces. I'm not keeping "it" together, but I'm not losing "it" either. At least not yet.

My anxiety peaks every three weeks (no NOT a menstrual cycle -worse) when Jacob is due for his VAC. Vincristine, Actinomycin-D, Cytoxan. I don't like being in hospitals. But more than that I don't like needing treatment from hospitals.

I'm restless. I'm tired. I'm worried. I'm burnt out.

It's mean to have you read this because you can't fix it. I can't fix it. I'm tired of trying to assure everyone that we're fine. We will be, but it's not fine with me to feel so helpless right now.

3rd Hospital Visit

We are preparing to return to the hospital tomorrow. I am driving all the carpools in duplicate today to try to make up for not driving anyone anywhere on Thursday & Friday. Jacob had school again today and will be off for the rest of the week. Today is also Cub Scouts. We might even try to cram Family Night into this evening's routine. I missed it yesterday because I was at Back to School Night, Michaels (to get our family photo custom framed - 60% off this week), & Target (to try to find more organizational tools for the bedrooms & closets. AND to make sure we have Oreos & pudding to make dirt cups).

I made salmon last night - a favorite of Jacob's. Today I'll bake pumpkin bread - a favorite of who-knows-who. But we all could use a little more antioxidants from the beta-carotene. I also intend to bake up some lasagna and/or meatloaf (where I plan to hide pumpkin seeds, flax, & oatmeal in the mix). I just trying to do normal stay-at-home mom things since I'll be at the hospital Wednesday night, Thursday all day, & Friday all day. I'm not an awesome stay-at-hospital mom. I guess I am for Jacob. He gets plenty of hovering and attention. I don't get much else done - including sleep. My others kids are scheduled to be in the caring hands of 7 friends plus at least three others driving my kids to and from school.

Thanks in advance to those who are helping here and afar.