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

Archive for the ‘cancer’ Category

I miss you, my baby girl, and will love you always

I apologize for being out of touch for so long. My computer died a couple of months back and although my husband used to be a PC technician before he injured his back, he cannot wrap his mind around whatever is wrong with it. My best friend bought me a new PC so that I could get back online and, perhaps, re-start my business when I feel able to.

I thought you might want to know…

Everything blew up and went so wrong. Christie passed away the evening of May 7.

On May 5, Christie started running a fever of 101, so we immediately took her to the local hospital’s ER. (This is the same hospital where she was originally diagnosed last October.) They admitted her and started running broad-spectrum antibiotics. They also took blood and started the cultures going. By the next day, she started feeling really sick. Nothing had come back yet on the cultures, so they kept running the antibiotics, along with some potassium and magnesium, as her levels were low. (We hadn’t been able to get those counts back up since her last chemotherapy.)

She continued to get worse until they became so concerned over her worsening condition that they moved her to the ICU. Her breathing had become very rapid and they were worried about the strain on her system, so they put her on a respirator and heavily sedated her. They wouldn’t let us stay with Christie in the ICU, so we stayed as late as we could and around 10:00p, they asked us to leave. I spoke to Christie and she opened her beautiful grey eyes - apparently,
she couldn’t be sedated enough that she didn’t recognize my voice or presence. *sad smile* I told her that we had to go home, that they wouldn’t let us stay in the ICU overnight but that we would be back in the morning. She started to cry, the tears silently spilling from her eyes. I cried, too, and told her, “Baby girl, I love you SO much.” She was trying to communicate something, trying with her eyes and attempting to move her head. I smoothed her brow and asked, “You love me too?” She gave me as much of a nod as she could manage. I hugged her as close as I could… not close enough because of the machinery around her and the fact that her hands were restrained to keep her from yanking the respirator tube out, but I was able to touch her, hug her, kiss her sweet face.

And C.R. and I went home. We were distraught but eventually I managed to fall asleep. As we were getting ready the next morning to head back, the phone rang. It was the hospital, letting us know that Christie’s condition had gotten even worse and that they didn’t expect her to make it much longer. We immediately headed out, thankful that the drive only took a few minutes.

She wasn’t conscious but I think that she knew we were there and knew how much we loved her. Her gallbladder was in bad shape and she had acidosis, to boot; she couldn’t have tolerated surgery. They attempted to do dialysis but the blood kept clogging the machine. The oncologist who diagnosed her brought in the results of research he was doing to find out what was happening to Christie - the end stage of anaplastic large cell lymphoma mimics sepsis.

After several hours, during which we called a few of her friends to let them know that Christie was in dire shape (they showed up almost right away, in droves… we filled the ICU waiting room), Christie
crashed. C.R. and I were in the room when it happened, but much of what happened is a blur to me. They were able to resuscitate her, but the doctor told us that there was no hope… this was just to let us say goodbye to her. We started letting her friends come in, one by one, to say goodbye.

She had become so tiny, so fragile, that when they resuscitated her they broke several of her bones. She crashed again and the doctor, who was almost in tears herself, begged me to let them stop trying to revive her. “They’re not doing anything but hurting her. Please, let them stop. She’s not going to make it,” Dr. Lendeman said. “They can’t stop until you give the word.” So, hysterical and barely coherent, I gave the order to stop… to let my precious, so very beloved daughter pass without any further intervention.

Since that day, our lives have fallen apart. I am so consumed with grief that just breathing is often difficult. My youngest son and my husband have become enemies. If we cannot come up with $500 by the 20th, the landlord (my father-in-law) is going to allow the house to be foreclosed on, which will also begin immediately. We will then lose everything - out pets (who have helped keep us as sane as we can be right now), most of our belongings, and we will be homeless in an old pickup truck with no inspection and no insurance… and
nowhere to go. Our food stamps were discontinued because I was unable to get the review paperwork in on time as Christie was in bad shape when that was due. I’ve reapplied but it can take months to get an appointment.

On Friday morning, our Internet will be terminated, with phone service to follow suit on Monday. I’ve already requested two 4-day extensions; they won’t extend the services any further after this. I WAS able to get the electric, gas and water paid, and the last two months we’ve paid $200 over our regular rent at my father-in-law’s demand. We completely lost our business… and the pittance I receive in child support doesn’t go far.

To make matters even worse, my youngest son (who is 17) walked out of the house yesterday afternoon with his favorite fedora, his skateboard and a change of clothes, and said he was going to live with his best friend, Aaron, and Aaron’s family. Ryan’s sick of having to do chores and had started treating my husband like dirt, calling him a “stupid stepfather that [he] doesn’t like very much.” This is new behavior for Ryan but he has said for some time that his friends who have step-parents treat them like this… and Ryan thinks it’s “cool and funny.” *sigh*

I don’t know what is going to happen to us. My oldest son came up from Austin for Christie’s memorial, which we held on May 23, and will be here in no more than 4 days, so I’ll have him around but… everything is horrible right now. I feel so hopeless and lost.

We get so very lonely these days and so many people have turned away because they can’t stand our pain. Just like the “friends” who turned away from Christie because they couldn’t stand to see her so sick. Oh, we will remember who was and who was not there for her and for us…

As the subject line says, Christie is still with me. She talks to me often - sometimes, her voice is so clear and strong that I’d almost swear she was right here with me still. C.R. often feels her presence and her love; he says that the days when I indicate that Christie is talking to me more are the same days when he feels her presence very strongly. The clearest, strongest thing she said to me, one day when I couldn’t seem to stop crying and wondering about the seemingly cruel Powers That Be, was, “Mama, I’ll wait for you.” I’ve never been much on angels - both Christie and I were both wary of angels but loved faeries! - but I don’t know what else to call her but my guardian angel.

Oh… we were supposed to be getting our dogs, a male and female Akita, fixed, but with everything that was going on we didn’t have an opportunity to get that done. So Sango, the female, ended up pregnant and had puppies on Memorial Day. They are adorable, and the only thing that makes me smile now. I thought I’d try to end on an upbeat note… *wry grin*

I apologize if this is disjointed and rambling, but I hope you will understand. I am so bereft and can’t think straight since Christie passed. I am barely functional. I know I’ve left things out - I cannot keep anything straight, I’m sorry.

Blessings and peace to you all,
Melinda

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.