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

Archive for the ‘teen’ Category

And back again we go

I can’t believe that tomorrow is Monday already. Can it really have been 5 days since we brought Christie back from the hospital, from that place that will always have a space in my heart because they saved my daughter’s life? I guess so… and so tomorrow morning at 8:00am, right in the midst of rush hour, we will leave to take Christie to Dr. Vusirikala’s office and then, presumably, the hospital. Provided that her blood and other counts are up appropriately, Christie will have another round of the Hyper CVAD chemo, along with her weekly dose of methotrexate in her Ommaya resevoir. Another 5 days or so in a hospital, away from Ryan, away from the pets and home.

It really sucks - when I’m with Christie, there’s a part of my heart that stays behind with Ryan and a part of me that’s sad. And when I’m with Ryan, it’s the same thing - part of me stays with Christie and misses her. I long for the day when my family can be together without worrying how long we have before Christie has to go back to the hospital.

I’m not ready to go back yet! It seems that we’ve had so little time, this time, to regroup and reconnect. We just got Amie back from the Humane Society, too, where her rear left leg was amputated thanks to the auto accident she was involved on April 1. The kittens have grown so much! And the entire front yard changed while we were gone - when we took Christie to the ER on April 2, the buds on the trees had barely started to open. Upon our return, everything was different. The buds had burst sometime during our absence, leaving the branches laden with their green finery.

Everything is just weird these days. There is no normal, not even our usual strangely cobbled semblance of normalcy. It’s all simply surreal. Often days blend into each other; sometimes I barely recall what month it is. I’ve missed bill payments, paperwork deadlines, all kinds of things. My short-term memory, already shorter-term than it probably ought to be, would likely resemble a colander if it could be seen.

Oh well. How can I complain that much if we’re in the process of saving Christie’s life?

I’ll write more from the hospital. Everyone take care and make sure you make sure that the ones you love, know that you love them.

Peace,
Melinda

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

Christie’s in the hospital again - CHOP didn’t work

Hi everyone…

Just a brief note to let you know what’s going on. My husband and I are home for a very little while to spend some time with Ryan, our 17-year-old son, get some groceries for home and the hospital (Christie won’t eat their food - suffice it to say the hospital she’s in is legendary for being a BAD hospital with inedible food), and briefly catch up with people.

I went with her for her chemo appointment on Thursday morning. Before they got started, her oncologist came walking in and motioned for us to follow her. She took Christie to a room, gave her a brief exam, and called an ambulance to transport us to the hospital that the clinic is affiliated with. She wanted a PET scan but insisted on a CT scan at the absolute least and wanted Christie admitted for observation. We suspect she already knew then what was to happen.

Bottom line: CHOP wasn’t working and the lymphoma spread. When first diagnosed last October, Christie had 4 affected lymph nodes in her abdominal cavity and 1 in her left axillary area. She now has several in her abdominal cavity, 3 in her pelvic area, 1 under her right armpit, 1 on her right side, 3 on the right side of her groin, 3-4 in her right upper thigh, 2 in her neck, and 1 on her left temple.

The onc changed Christie’s chemo from CHOP to ESHAP. She will be in the hospital for at least 5 days for every treatment, and we have to learn how to give her Neupogen shots (that’s not so hard, really).

Further, Christie is going to need an auto SCT. The hospital where she is doesn’t do them but there are two hospitals in Dallas that do. The social worker at the cancer center is already working on helping us figure out how we’re going to get this accomplished. It has already been suggested that we do a few fundraisers and see what help we can get from family (HA!), friends, charitable organizations, cancer organizations, etc. If her SSI ever gets approved, she will have Medicaid, and we can get Medicaid to cover this.

I have to walk the dogs now, then get to the grocery store, and won’t be back for another couple of days so I won’t be able to respond to anyone right away.  I’ll try to check back in soon. Until then, please keep us in your prayers and meditations, and we’ll keep all of you in ours.

 

Photos of Christie

It’s always good to have a face to go with the name, and in that spirit I decided to post some photos of my beautiful baby girl.