Going Home?

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Unbelievably, we may be going home Saturday!!! Hurray! She is doing so well they see no reason to keep her. We will have to return Tuesday for a spinal tap and chemo injection into the spinal fluid, a bone marrow biopsy and her IV chemo (sounds like a day of fun, huh), but we can be at home until then. This will be so good for all of us. Tanner is a social butterfly, as you know, and does not do well in the hospital. She is depressed and the steroids are exacerbating that so she is insufferable right now. Getting home, being around Jake-the-miracle-cure, and not being hooked to that annoying IV pole will do wonders for her. So, please don’t send any gifts to the hospital — we probably won’t be there. And, please let us figure out what she is going to be capable of before you come visit. Call first, because she may not be able to see anyone. We’ll get some guidelines at the hospital tomorrow and just see how she adjusts.

I can’t wait to get her home and for us all not to be living in that “sick” environment, and to be able to see Jake — he’s been such a trooper being transferred from friend to Grandmother to other Grandmother.

Keep your fingers crossed nothing changes to keep us from going home.

Beth

Done

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Okay, the shots are done. Deep breath. I cried as hard as she did. I felt like I completely fed her to lions and I carried her little frail body down the hall to the room for a “special treatment.” She had no idea what was coming. She screamed at me, “Why did you do that?”

I have to, it’s the only way to kill the *&^%$! luekemia.

Her best friend is coming right now, bringing chik-fil-a and they’re going to paint their toenails and make bracelets. Maybe she’ll forget.

She’s lost five pounds. If ever anyone didn’t have five pounds to lose…

Beth

Tanner has cancer

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Today, for the first time, Tanner looks like a cancer patient. She is pale with dark shadows under her eyes and can’t wake up this morning, even though it is 8:45 am (for those of you who know what early birds my kids are, this will mean something). I know in my brain that means the chemo is working, killing all those abnormal cells along with what few good ones she had left, but in my heart it is killing me. I just want to fix it for her. Today is the day she gets the two horrible shots in her legs and I hope that she and I are strong. Tanner is terrified of shots and if there is any part of this that I could take from her, this would be it. Please pray for us today.

Beth

Low risk, low risk, low risk!!!

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Never have a wanted to kiss a doctor more than when Dr. Mixon told me that the results of Tanner’s chromasome translocations test (I’ll explain this later) moved her from standard risk to low risk!!!!!! This means the best outcomes prognosis and the least aggressive treatment plan. Hallelujah! Not only that, the doctors are so pleased with how well she is responding to the treatment that she may get to come home next week! Unbelieveable. You cannot keep this child down. Not leukemia, not crazy drug reactions, not even disease-carrying ticks!!! Tanner Page… world champion disease fighter delivers the first of many roundhouse punches!

The chromosome translocations test shows them the actual makeup of the leukemia cells, which of course, are abnormal. Leukemia cells are actually just white blood cells that don’t mature. Some stop when they are babies, some when they are toddlers and some when they are teenagers. Just depends on which type of leukemia you have (Tanner has pre-b ALL). So there are all these teenagers running around in your body partying and drinking and trashing the house. These cells also grow more quickly than normal cells, and just like word spreads like lightning about a great party, more and more teenagers come and the whole place goes to you-know-what in a handbasket. Within these crazy immature cells, the chromosomes sometimes swap genetic information. What boggles the mind is that modern medicine knows which of these translocations, as they are called, are predictors of good outcomes or bad outcomes. Tanner’s translocation is an indicator of, and I quote, “very good outcomes.” (thanks Kim for the helpful book that helped me understand this).

John and I are elated by this news and I got Tanner to high five me, but it means nothing to her and doesn’t change that fact that she has been woken up two nights in a row from a deep sleep to take five NASTY medicines, or that now her cheeks tingle and drive her crazy, or that tomorrow she will get a shot in each thigh, simultaneously, that will put a vaccine to shame. Not to put a damper on the good news, but just to say that life is pretty miserable for her and will be for a while. The reality is that for a leukemia patient the good news that treatment is working really well is bad news for the way they feel. We are cheering as we watch Tanner’s white blood cells drop because we know most of those cells are leukemia cells and their butts are being kicked, but for her, that means she feels very tired and weak. She still has some pain from too many cells exerting pressure in her bones, but that seems to be lessening as the chemo does its job. The side effects of the chemo are beginning to show, though. She had jaw pain today that is classic for one of the drugs and has had to have morphine twice today in order to be comfortable. Thank God for morphine.

So, speaking of side effects, they warned us mightily about the heavy dose of steroids she will take for 28 days straight and boy, were they right. Talk about cranky and unreasonable. And, sadly, a little girl who wakes from sleep crying uncontrollably and just wants Mommy to hold her. I want to hate all these drugs, but they’re saving my baby’s life.

We did have some good moments today, though brief. Again, Jake was a miracle-worker. I have some hilarious pictures of the two of them wearing John’s mother’s wigs and laughing hysterically. (I’ll get Ron to post them as soon as they download them along with a picture of my brother and his newly shaved head.) They played paddle ball and Tanner practically jumped out of bed to follow him around the room (yes, on her own two feet) while I followed along as unobtrusively as possible with her IV pole and tried to pretend I wasn’t there. Then. after lunch and a long nap, she and I went down to the playroom after dinner and drew some pictures. I drew her a picture of her, her future husband, child and cat when she grew up. She thought that was silly — I’m hoping it’s prophetic. She drew a picture of a dress, jewelry and a scarf. Then we cut out hearts and flowers to decorate the room. Priceless.

I want to take a moment to thank Ron Whitler for setting up this site for me. It has made it much easier to keep people updated without me having to respond individually to each inquiry. Please don’t be offended if I don’t write you an email answering your questions about Tanner’s status or even ours, but direct you to this site instead. Sometimes I just can’t answer everyone’s emails, even though I want to. And please don’t feel bad if you only read the first paragraph since I’m so lengthy at times. I’ll try to put the meat right there so you don’t have to wade through if you don’t have the time or inclination to do so. You don’t have to read it all, but I do have to write it all. It’s the only thing that lets me lay down my head at night without having nightmares.

Speaking of laying down my head,

Good night.
Beth

Update – June 3, 2009

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Dear Friends:

Today started out so bad. Although Tanner actually seemed better physically, she was totally depressed and cried most of the morning. No five year old should have to start her day with 6 different oral medications that taste like crap! I told her it would help her, I told her it would make her feel better, I told her she had to take it or the nurses and I would hold her down and give it to her (boy, did I feel like mother of the year for that one). Finally, she took it all and with tears told me she hated this. I hate this too, punkin.

As I changed her sheets from where I had spilled her bedpan overnight, she sat on the bedside toilet and cried in pain. I told her we would go outside to the little balcony play area for our unit and that Jake and Grandmom and Grandad would come. She said she didn’t want to do anything but sit in bed and watch TV. Then, the miracle happened… a little blond, blue-eyed two-year-old miracle who skipped into her room and said, “Hi Ta Ta!” Her face lit up, he crawled up in bed with her (a priviledge none of the rest of us have had since she is in such pain) and actually hugged him (she has hugged me several times in complete surrender, but I have not been able to hug her back for fear of hurting her). She immediately got in the wheelchair, and holding Jake’s hand, rode down the hall with me pushing and toting her IV contraption with us. We went outside where she tried to get up and follow jake (she couldn’t do it and had to sit back down), then back to the room where they hung out and she got to be a big sister and not a cancer patient. The best medicine ever.

That said, she crashed after they left and slept for a couple of hours. I left at around 2 pm when John came to go home and spend some time with Jake. On her docket for the afternoon… a craft in the playroom and a private concert by our dear friend Celia Whitler since Tanner can’t go off the unit to see Celia play downstairs. And, of course, chemo. I hope the effect of Jake’s visit lasted through the day.

Speaking of Jake, what I coming to realize about this horrible disease is that our whole family has cancer. Sure, Tanner is bearing the lion’s share, but it is effecting us all, even little Jake. I called Jake on the way home from the hospital to let him know we were coming home and he asked, “Tanner come too?” It’s sad he’s too little to understand, but beautiful in it’s own way too. When he was with Tanner today he never asked about her IV or why she was in bed or anything. She was just his big sister, same as always. But, we will all have some huge adjustments to make.

My brother shaved his head today for Tanner… amazing. He sent a picture and promised her he would keep his new hairdo until her hair grew in.

Thanks to everyone for your love and support — we feel it and it helps.

Love,
Beth

Tanner update 6/2

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Dear Friends:

tanner-curls-with-backpackSo much has happened in the past two very long days.  Let me start by saying thank you to all of you for your prayers, your loving messages, your extraordinary kindnesses and thoughtfulness towards our family in this terrible time for us.  Your emails keep John and I going through the day; we feel wrapped in love at a time when we need it most.

Yesterday was another exhausting day, but Tanner’s surgery to insert the chemo port and her spinal tap went well.  Her spinal fluid showed no leukemia cells, thankfully, but they inject chemo into her spinal fluid either way, though to prevent any cells from forming there.  This &^%^$#!! disease is so hideous that it actually hides in your spinal column since it knows that the chemo injected into her bloostream doesn’t work there.  Your body protects your brain and spinal column so thoroughly, that unless they inject the chemo directly into the spine, the leukemia can hide there and come out later to begin it’s path of destruction once again.  Unbelievable.

Tanner handled yesterday beautifully, and mercifully, emerged from her surgery a new girl.  One of the medicines they have given her to help with the pain finally kicked in after building up in her system for a few days and has made it possible for her to be much more comfortable while still and less tender when moving, although moving is still extremely painful.  That very morning, she was either completely doped up on morphine or she was panting from the excrutiating pain of just lying in her bed; it was heartbreaking.  So, we are so grateful she is a little more comfortable and some of her personality has come back.  She tires easily, though and sleeps often.

Today was the day that Tanner Page, age 5 and three quarters, had to accept that she has cancer.  The endless march of medication, the length of time she will be in the hospital, and, most devestating to her, the fact that she will lose her hair.  She ended the day by refusing to take medication (in only a way that Tanner could refuse!) and then realizing it made no difference whether she refused or not.  Before she went to sleep, she looked up at me with tears streaming down her cheeks and said, “I hate this place and I hate Leukemia.”  Amen to that.

She also had first dose of chemo today, which is oddly anticlimactic.  They just shoot it into the IV line that runs into her port (which feeds directly into the blood vessels leading to her heart) and that’s that.  I didn’t notice any real side effects today except that her food seemed to not taste good to her.

John and I spent the morning trying to digest the treatment plan, which is just so unimaginable.  It seemed like they discussed about a hundred drugs with us, to be administered in every way possible.  We will have honorary medical degrees before this is through.

So, enough said about the awful stuff… here was the good stuff:  my child, head pealed back in hysterical laughter as she snatched the hair off a puppet named Slater to reveal his leukemia inspired bald head; the immeasurable kindess of our friends who are doing things for us we didn’t even realize we needed; a darling little 8-year old named Lily who is friends with one of Tanner’s friends is 7 months into Leukemia treatment and wrote Tanner a note in crayon telling her that chemo is hard but she knows that Tanner can do it; my son saying to me as I left the house (again) this morning, “Mommy come back?” and then running off happily to play with a friend; and the doctors and nurses at this amazing hospital where they have thought of anything and everything a family could ever need and who treat our daughter like she is their own, even though they see this stuff every day.

Forgive me for the length of this post.  It’s ridiculously long, but helps me process this thing that has hit my family and turned our lives upside down.  A good friend has created a blog so that I can keep this up and disseminate information more easily.  You can reach it at http://www.tanner.celiamusic.net.  It will probably post tomorrow.  Thanks, Ron. [editorial: You’re welcome, glad I can do something helpful, — Ron]

One last thing — people keep asking how they can help… right now we have everything we need, but if you want to help us find a way to end this horrible disease, there is one thing you can do.  The little girl I mentioned above has a website, lilysgarden.org, where you can donate money to research for children’s cancer.  Any donations made in Tanner’s honor would be amazing.

Time for bed.
Love,
Beth

Tanner’s diagnosis

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Dear Friends and Family:

190px-acute_leukemia-allFor those of you who are receiving these email updates for the first time, let me start by saying that Tanner is in the hospital again and has been since Thursday. Finally after many days of intense pain, fever and unexplained abnormalities in her blood work, we have a diagnosis, but it is not any from which we can find any comfort. Tanner has leukemia… my sweet, funny little girl has cancer… so hard to believe, but writing this helps me cope somehow.

It is midnight and I have just finished signing the paperwork for her to have a chemotherapy port surgically implanted into her chest tomorrow so we can begin treatment immediately. She will also have a spinal tap. This is following a bone marrow biopsy today, so suffice it to say, not a good couple of days for her.

Odd as this sounds, if you are going to have leukemia, this is the type to get. She has ALL [read more at Wikipedia], which for a girl her age, has a 95% cure rate. We will be in the hospital for treatment for 2-4 weeks, followed by outpatient chemo treatments once a week for many months to come. That will eventually change to once a month. Her total treaments will last 2 1/2 to 3 years — a fact that I still cannot come to any terms with at all. I think getting through tomorrow will be my goal for now.

I sent my poor exhausted husband home to get some rest, but the nurses and doctors are quickly becoming friends now and have been super, so I don’t feel alone.

Her intense back, neck and leg pain, which doctors found to be incompatible with Leukemia, is due to a high concentraction of leukemia cells clustered in her spine an legs, which is apparently not seen often. 90% of the cells in her bone marrow are leukemia cells — how could that be when she was riding her bike so enthusiastically just three days ago?

Usually, she is pretty comfortable as long as she remains completely immobile, but just minutes ago developed a pain in her side that is hurting her now even when she rests. She calls it a needle pain and when it flares, tears roll down her little cheeks and her eyes grow wide in helpless suprise. She looks at her Mommy to fix it, which of course, I can’t. The doctor orders more morphine and now she is trying to go back to sleep.

You wonderful people have been calling and emailing asking what you can do to help. Tomorrow we will get a better idea of what the next few weeks look like and let you know. For now, I know she can’t have a lot of visitors, due to immune suppression issues. On this unit, each room can only have two visitors, including parents. I know seeing kids would boost her spirits, but we have to be very careful that they are healthy kids and limit the number of different people she is exposed to. Cards, letters, pictures or any kind of little things that would remind her of her friends would be appreciated. Even a little video of a friend wishing her to get well that we could play on the computer would be great. Anna Lynn Whitfield from our church is coordinating meals, which are also greatly appreciated. For now, my parents are taking care of Jake, but we may need some help with that eventually.

I don’t know what else to say. My heart is broken, but will need to heal itself by tomorrow so I can be strong for my little girl.

Love,
Beth

Reason to hope — Tanner!

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Okay, we have a little hope that it is not Leukemia… Doctors came in today to say the more tests they run and the more Tanner’s symptoms progress, there are some things going on that are not typical of Leukemia. She still has abnormal white blood cells — a strong indication of leukemia — but her elevated enzyme levels and and an enlarged bile duct are not usually associated with Leukemia. They are currently doing a battery of blood tests to rule out some kind of viral or bacterial infection as well as having a liver specialist chase down her bile and enzyme situation before proceeding with the bone marrow biopsy. This by no means rules out leukemia, but is the only hope we have that it could be something else. How typical of Tanner to be atypical.

Tanner Update

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Beyond all our understanding, Tanner’s current diagnosis is presumed to be leukemia.  All tests, lab work, clinical signs point to this diagnosis, although  a bone marrow test is necessary for a firm diagnosis.  We are beyond devastated, but know we must gather ourselves to face this horrible thing head on and conquer it.  Needless to say, we are in for a long, ugly haul.  We will be in the hospital for at least 2 weeks undergoing intensive chemo and then ongoing weekly visits to the hospital for many months and long-term chemo for years.  I can’t believe this even as I write it.

Normally, we wouldn’t send out an email like this without a firm diagnosis, but feel we need to prepare for the seeming inevitableness of incorporating this new challenge into our lives.  So, putting all pride aside, we are letting our dear friends know that we will be needing help.  My parents are coming tomorrow for an undetermined length of time to care for Jake.  We will need food (I can’t believe I am asking so shamelessly, but I know when I am beat), possibly help caring for Jake and, possibly someone to sit with Tanner at times.  And, of course, prayer.

Tanner doesn’t know yet… I can’t imagine telling her she will be missing all the things she loves to do so much.  I’ll have to table that thought until tomorrow.

Once again, we thank God for our unbelievable friends. 

Beth & John