Christie’s World, or Life Is Not for the Faint of Heart

Home for a couple of weeks or so

Hi all…

Christie was finally released from the hospital about a week ago. This is the first chance I’ve had to post… this is the first day Christie has seemed to resemble something human since the day after her first experience with ESHAP.

I want to thank you for all your support and hope that you can forgive me for not being able to write to each of you, individually, as I would like to.

Christie made it through her first ESHAP treatment. She had some trouble with her vision while going through the actual 5-day course but it cleared up once the IV finished. She’s had some issues with vomiting; sometimes it comes completely unexpectedly, other times even a cocktail of Zofran, phenergen, and Reglan doesn’t quell the nausea.

The biggest problem, however, is the extreme fatigue. It’s a challenge to get her to smile, let alone talk in anything above a loud whisper. She’d rather sleep than anything else, and seems almost dazed most of the time. (Chemo head?)

I learned how to give her Neupogen shots and she said I do it “really good” and, as she says, “coming from someone who’s had a LOT of shots from a LOT of nurses, that should mean something.” *chuckle* She had a 10-day run of shots, so by now I feel like an old pro!

The last couple of days have gotten somewhat better. She’s smiling more, laughing more, and while her voice is still soft, it’s stronger and much more vibrant now.

This afternoon, Christie’s finally having a PET scan done. We have an appointment with her onc on Monday and hope to know something then.

We’re awaiting word on Christie’s appeal for SSI. Apparently, her onc made some VERY commanding notes and recommendations - her nurse called them “demands” - that Christie be accepted for SSI, which also means Medicaid. We have a service through the hospital that helps with SSI and disability cases; they’re working on getting this approved ASAP.

- Auto SCTs aren’t done at the county hospital and the only hospitals in this area that do SCTs require insurance of some kind (including Medicaid), or some kind of cash up front. -

We’re hanging in there and taking each new day as it comes. For someone like my husband, who likes things orderly and planned out, this has been a bit of an adjustment, to say the least! *grin*

The good thing is, the ESHAP seems to already be working. We can no longer see or feel any of the newer tumors (axillary, temple, groin, side). Even one of the general practitioners that Christie’s onc brought in during this last hospital stay was amazed at how well she responded. I keep telling myself that’s good and try to ignore the voice that says, “That’s what happened with the first CHOP treatment, too.”

We applied for medical necessity classification with the utility companies. Amazingly, for both the phone and the gas companies, that is only available for 30 days from the day of acceptance. The water company granted our status for a year. The electric company completely denied us because the only way they grant a “compassionate allowance” is if a person is on life-support equipment and cannot be moved. I really hate having to resort to such measures, but perhaps it’s a lesson in humility?

It’s a beautiful day here - the sun is peeking from behind some poufy clouds. It’s 73 degrees right now and from my window, I can see the laundry blowing in the pleasant, southerly breeze. I’ve come to really love being outdoors lately.

I know that especially as a parent, one does whatever one has to do, but… how do you go on as if nothing has happened? I should be seeking out clients, looking for a few employees, making marketing phone calls (something I have always hated doing, anyway - why can’t clients just come to me? *grin*), creating artwork, learning new strategies… but with Christie needing so much care, my husband being at least partially incapacitated, a 17-year-old son who still needs attention and time from Mom, doggies to walk and kitties to chase, agencies to call and doctor visits, the all-too-often emergency room visits… I’m always exhausted and fall asleep at the drop of a hat. Work? I’d love to have some… it would be like a vacation!

Oh… next Tuesday, my husband and I have an appointment with a local agency to see if they can help us get a hot water heater in here. It just burns me, though, that we have to ask a charity agency to do something that is the landlord’s responsibility. Then again, no other landlord would have let us stay here rent-free at all. I guess in the end, it all works out, somehow.

Hope you all have a wonderful, blessed day!
Melinda

This entry was posted on Friday, March 6th, 2009 at 12:03 PM and is filed under anaplastic large cell lymphoma, cancer, childhood cancer, lymphoma, teen. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.