Monday, November 2, 2009

Pediatric Hospital = Free Stuff! And some good news!

I got my first transplant four years ago in Boston (four years ago on Wednesday the 4th, actually. Happy 4th second birthday to me?). I lived in Boston with my mom for about four months, through the first 100 days after my transplant. The first 100 days is the most critical time, when your new immune system is the weakest and when you can get some pretty serious complications. Anyway, after 100 days when everything had gone smoothly we were given the OK to go back to Michigan. My doctor in Boston is BFF with the head of pediatric bone marrow transplant here, I think they went to medical school together, so he wanted me to be seen by him. I have been a pediatric bone marrow transplant patient ever since.

There were some immediate differences I noticed between adult and pediatric care. Peds doctors are much more concerned about thorough follow up care and quality of life issues. It makes sense; pediatric patients have their entire lives to live out, adult patients might be 50 years old when they go in for transplant and not have to worry about things like early menopause and how that affects their body. Almost as soon as I showed up in the pediatric clinic I was scheduled to for appointments with an eye doctor and a gynecologist, both of whom deal almost exclusively with transplant patients. I was also scheduled for a litany of tests - cardiac, pulmonary, I don't even remember what other tests. This was all done to make sure things were functioning well and to have a base line in case anything changed in the future. It kind of irritates me that these things aren't done for the adult population. More and more people are surviving cancer for longer periods of time and oncologists need to start thinking more about long term living issues, like if the lungs are working properly and how women younger than menopause age are managing being in menopause.

As an inpatient I notice the same difference. Physical therapy came up to see me one of my first days in here and gave me several different exersizes to keep me from sitting around like a lumpy potato during my hospital stay, and then came up to do a special work out with me once a week. Of course much of the difference I notice is just the fact that it is a children's hospital so they have an activity room with art projects, video games, pool, air hockey, a Wii, TVs, all kinds of toys for little kids. There's a lounge upstairs with similar stuff. Art and music therapists will come by if I want them to. I've had a few sessions with the art therapist where I made some embarassingly bad silk paintings that my mom can display proudly like the lopsided pinch pots I used to make in elementary school art class. There's a dog that comes around to visit every week, and even though I can't pet it because it's probably full of diseases, it's nice to have a puppy come in my room. Athletes from the university come by every Thursday to visit with the kids and give out autographed hats and t-shirts. I haven't had them come visit me (they always ask if you want to be visited) because I feel weird being so much older than them. It isn't as if it's always the football and basketball players either, it's usually the crew team or something random like that. Although I did think I saw the football coach up here last week....

Then there's the free stuff. You make out like a bandit in the kids hospital! Everyone likes sick children so there are all of these volunteer organizations that make things for the patients. Part of the difference between the two hospitals in this case might be geography rather than adults vs peds - I am in the Midwest, we're nice and we do crafty things that East Coasters don't do, like quilting. Yes, today I was given a quilt. I've also gotten a fleecy pillow, about 15 pillow cases, and a ton of stuff for Halloween. Best of all, they have a book cart. Unfortunately, the books are all for children or teenagers, but if I wanted I could get a free book twice a week. How cool is that?! One time some guys came by trying to give away toys and t-shirts. It's like a continuous stream of presents, and you know, it really does brighten your day to know that all of these nice people are trying to help you feel better.

Moral of the story: if you have to get admitted to the hospital, get admitted to a peds hospital. You'll be glad you did.

We had some GREAT news today! I had a PET/CT scan this morning to see if the chemotherapy did its job and killed some cancer cells. Result: Complete Response, which means they didn't find any disease! Good job chemotherapy!

The other excellent news is that they are planning on discharging me tomorrow, provided I don't start running a fever or speaking in tongues or something. Tomorrow will be Day 36. This is officially my longest hospital stay ever. I will be so glad to be out of here! Fingers crossed it goes off without a hitch.

9 comments:

Ksam said...

Oh wow, good news indeed, I will definitely be crossing my fingers for you!

shannon said...

Fingers are crossed!!!

Barbara said...

Hi Mira,

More fingers crossed that you will be out!
What an interesting look at the Peds wards. You are right; that side rocks ! But nothing like your own bed & home.

Take care.

L'√Čtrang√®re Americaine said...

That's great news Mira, I'm very happy for you.
Keeping my fingers crossed as well that you get to head home!!

Leah said...

Things are looking up for you, my doigts are as croised as croised can be!!

Andromeda said...

You sound so positive about everything! I'm glad there are so many people around you, it must help so much. I hope tomorrow goes well for you!

au soleil levant said...

All the croise-d doigts must have worked, got out yesterday! Thanks!

Zhu said...

Awesome news! I'm very happy for you. Free stuffs and cool activities yeah, but it's still an hospital and not the nicest environment I'm sure.

Enjoy being back home and let us know how you are doing, we are still here for you!

au soleil levant said...

Thank you Zhu!