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

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

I’m tired yet riddled with anxiety because in the midst of getting good news that Christie’s going to be able to go home, C.R.’s “father” called and wanted t0 know exactly what time we would be home. He has called twice today to find out if we know, but there’s no obvious reason that he would need to know. We know the man and suspect he has something heinous up his sleeve. Perhaps the delivery of an ultimatum or an eviction notice… perhaps to demand even more of the one thing he worships and cares about more than anything in the world - M O N E Y. If he and his nasty wife would just back off, life would be better and we wouldn’t be constantly worried about losing a place to live.

Sure, it’s true we owe them a lot of back rent. We lost a successful small business and had matters complicated by Christie’s diagnosis. They have threatened several times to evict us and even served us with formal notice twice. So many people have expressed disgust that “family” would do this, but C.R.’s father and his wife aren’t exactly family to us.

They think we’re scum, they have called us names, they hurl accusations that we’re partying and living in high style in their crappy, ghetto house with windows that they painted shut… with a front door that has a huge hole in it that we had to cover with duct tape… with a plumbing leak that is ruining the house and they won’t have repaired because we owe them back rent.

We have next to nothing, not even a TV that really works right, not even a microwave oven, not even decent furniture. Christie’s mattress has a spring popping through the fabric, mine and C.R.’s is literally falling apart. We can’t even afford clothing or shoes. Oh, yeah, we’re living the high life alright. While we struggle to cover the most basic of expenses and feed our family, we’re living the high life. While we battle with pain every single day of our lives because we have no medical care, we’re living the high life. While we live without hot water because C.R.’s father is too cheap and too petty to replace the hot water heater that broke in August of 2008, we’re living the high life.

And yes, dammit, it IS all true. If one more person e-mails me and accuses me of making things up, of being “horrible,” of fabricating this entire, heart-wrenching experience, I swear I’m going to scream. You who feel you need to attack me and accuse me of lies, what good does it do you? Why go out of your way to jab at me? What payoff does it get you? It just upsets me and by the gods, I don’t need any more upset in my life!

So while I am excited to be able to take Christie home, finally, and I am eternally grateful that she made it through this horrific crisis, I am almost afraid to go home because I don’t know what will happen next…

Not only that, but the truck is a 1987 Ford F-150 and uses WAY too much gas. A trip back and forth costs $20 in gas alone, and we just don’t have the resources to afford it.

Things are getting better in some ways, worse in others. Our landlord (who, as you may remember, is my husband’s father) is demanding $500 by the end of the month. Our rent is supposed to be $300; what we’re doing is making the house payments for him because he can’t afford to keep up the mortgage any longer. We just paid him $500 on the 1st of this month, delaying getting Christie to the hospital and endangering her life because he HAD to have the money that day or, he said, the house would go into foreclosure. He is threatening our home… and, like the ass he always is, is doing so at the worst possible time.

Ryan called yesterday and said there was a letter from the electric company that came in last week but he was thinking that it might be important. So I asked him to open it, and it was a termination notice for $78, which has to be received by next Monday, the 20th. I’ve tried to call the electric company but can’t get through for some reason. I’ll continue to try and tomorrow will try to get in touch with Cancer Care Services in Ft. Worth to see if they can help. It’s a small bill… maybe they can.

And I can’t seem to get verification of whether our tax return was accepted. I e-filed via the IRS website but never got a confirmation e-mail, and have gotten conflicting messages from their site. I’ve tried to call and every time I have to sit on hold forever, waiting for an agent, something happens and I have to hang up. Tonight, finally, I have a few minutes to call… but their phone system is overloaded - of course, it’s 4/15! - and they are asking people to call back on or after 4/16. UGH!

To make matters even more frustrating, Christie started running a fever last night. Dr. V says it’s a neutropenic fever, but we can’t take her back outside because, her nurse today said, “She got that fever AFTER you took her outside yesterday and we don’t want her back outside because of that.” WTF?!??? I don’t think the outdoors gave her a fever. Christie is pretty upset over that because she loves being outside and REALLY wants to go. The longer they keep her in this room, the more depressed she gets.

She did start eating again - HURRAH! - but now she needs to drink more. They started her on IV fluids last night because she’s dehydrated. Always something different, always some fly in the ointment. *sigh* She wants to go home so much… being holed up in here only makes things worse for her in so many ways. It doesn’t help that she’s frustrated and upset, and being a tad difficult because of that. It’s a vicious cycle but I don’t know how to break it.

C.R. and I have doctor appointments on the 17th. We need to get our Border Collie, Amie, out of the Humane Society’s shelter/hospital. (She was hit by a car on the 31st of March and had a leg amputated.) We need to get home and see Ryan and our other pets. This is insane, being so far from home, and it’s costing an arm and a leg, considering that C.R. and I have to eat, too.

So frustrating… Not Christie’s fault by any means, but frustrating nonetheless. I’m thankful that she’s here, and that they saved her life… more than I can ever say! But still, it’s hard. Like the floor I sometimes sleep on here. *wry chuckle* Let’s just say these rooms don’t have the best accomodations for family. There’s a window seat that can be used as a short, rather hard and uncomfy bed. C.R. gets that 9 times out of 10 because he has serious back problems. There are two rigid, high-backed chairs that I sometimes put together, seat to seat, and sprawl across to sleep. And there’s the floor. OUCH!

Oh, how we want to go home…

Two days ago, Christie became completely incoherent and unable to function. She cannot walk or talk, she is confused and doesn’t know what’s going on.

When we brought Christie to the ER early yesterday afternoon, the ER doctor ran several tests, including a lumbar puncture, and diagnosed her with meningitis (an infection of the brain). He assured us that we caught it early enough and she would be okay. They admitted her to Methodist Mansfield Hospital here in town, where she is being seen and evaluated by a team of great doctors, including one of our area’s most noted oncologists and a neurologist.

The oncologist who first diagnosed her last October is on the case and he told us this morning that he isn’t altogether certain that it’s meningitis. He is afraid it could be that the lymphoma has spread to her brain, which would explain why her central nervous system is so affected.

It’s frightening to look into her beautiful grey eyes. Instead of dancing and sparkling as they normally do, they’re vacant and blank. She has moments of vague lucidity when she will playfully poke my nose, try to kiss me, or grasp my hand and those moments are what keep me going.

Please send prayers and positive, healing energies… prayers… burn candles… whatever you feel called to do. My baby girl is fighting for her life right now and she needs whatever help you can send her way.

We have to head back to the hospital now, so I’m gone…

Blessings and peace… and thanks…
Melinda

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.

Things just get so overwhelming sometimes that I don’t even feel that I have the strength or presence of mind to put even two words together in the correct order. At times, I don’t even get e-mails until long after they’ve been sent. At one point, we even lost our Internet and telephone service temporarily, which set things back more than a little.

Christie was recently back in the hospital for a little over a week. On New Year’s Eve, she had an endoscopy (where they run a camera into the stomach to see what’s going on) to figure out why her pain and nausea continue despite being on heavy medications and the chemo reducing the size of the tumours in her abdomen. What they discovered was a condition called gastroparesis, which is paralyzation of all or part of the stomach that results in reduced ability of the stomach to digest and process food. This was caused by a combination of the lymphoma, the chemo, and her meds. It may or may not clear up when she goes into remission and if it does, it could take several months to do so.

Around midnight on New Year’s Eve, the intractable pain, nausea and vomiting became so severe that it reminded us of what was going on before she was diagnosed. Christie couldn’t even keep down a sip of water. I called her oncologist, who advised us to take her to the ER. We did… and she was admitted early the next morning for observation. Within 24 hours of that, she was taken to the oncology wing, where she developed a low-grade fever and remained for the next week.

They did an MRI on her brain, another endoscopy, a colonoscopy, a CT scan, and she swallowed a “pill-cam” that traveled through her digestive system and sent pictures back to a hard drive that was attached via a harness that she wore for about 10 hours. Of course, there were also the standard blood, urine and stool analyses. We had four different doctors working on her case. I was terrified, especially after the gastroenterologist said he suspected that there was more cancer than we had originally thought. (Thank the Powers That Be, he was wrong!)

In the end, they said there are several things going on in her abdomen - tumours, a war on those tumours, gastroparesis, effects of meds - and she’s apparently just going to be in pain for awhile. There’s also the cumulative effect of the chemo, treatment that contains harsh toxins that take their toll on the body in many ways. We’re still thinking this can’t be right - seriously, she HAS to be in pain??!?!? - and trying to get her oncologist to take a look at things. However, her oncologist has been out of town for two weeks on a much-needed vacation. (What? Did no one tell her that she can’t do that while my daughter is under her care? *chuckle*)

The fever never was explained as they could find no cause, so it was ruled a “fever of unknown origin”, which they told us is very common with lymphoma patients.

Every week finds us taking Christie to yet another appointment - to see the oncologist, to have blood work done, to get chemo, to have various tests, to get meds… all kinds of things. She’s on three different painkillers, two anti-emetics, a med that helps encourage her stomach to work correctly, Nexium for heartburn and other minor stomach issues, prednisone for 5 days every chemo cycle, uhhhhhh… I know there’s more but I can’t remember all of it.

To make everything more difficult, our old pickup truck’s radiator keeps springing leaks so we have to rely on the Red Cross Wheels program and a couple of friends who offered to help with rides when they can. Unfortunately, those options don’t always pan out and Christie missed an appointment this past week to get blood work done. A used radiator wouldn’t cost a whole lot, it’s true, but we simply don’t have it. We’re struggling just to survive these days.

Every time I think I’m going to have a little bit of time to make calls to potential clients, something else happens and I’ve lost the opportunity. And, as C.R. (hubby) discovered recently, jobs are extremely hard to come by in our neck of the woods.

And Christie was denied SSI after her first application. We’re appealing, but we’ve been told that the Social Security Administration can be difficult to work with and certainly doesn’t view one’s situation with the same urgency was the individual would. *grumble-sigh*

Caring for her is a full-time job in and of itself. Trying to encourage her to eat is a challenge. A few friends have, on occasion, brought by a little herb to help Christie deal with the pain, nausea and appetite problems… and it works like a miracle. I am SO definitely a proponent of legalizing medicinal marijuana!!!

I keep wanting to get back to creating, but much like the desire to find work it often has to be put on hold while I care for my baby girl. I am still around. Life will never return to what it once was, but we will find a new “normal” and eventually, I will stop feeling exhausted, overwhelmed and anxious.

BTW, I don’t know if I mentioned it, but I did finally get on meds for my depression and high blood pressure, but they don’t seem to be doing the trick. As soon as I can find an opportunity to get to a doctor myself, I need to do so. I know that I can’t take good enough care of Christie if I don’t take care of myself first. But oh, finding the time and a ride to the doctor for me is an exercise in frustration! *wry grin*

I hope everyone had wonderful holidays and that 2009 brings each one of you all the wonders, blessings, joy, and love that makes your hearts sing and puts brilliant smiles on your faces. Once again, PLEASE forgive me for being so out of touch. I hope to do better in the future…

Peace,
Melinda