Category Archives: treatment

Today get better

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I started out today in a funk, wishing Tanner felt better, wanting her to get up because the doctor and the P.T. said she should be able to, frustrated with the whole situation. I think we all learned a lot today. We upped her pain meds, which made a world of difference. She stayed awake longer, was much less whiny, sat up a lot on her own and even went outside some (around the block in a wagon, and in the back yard watching Jake play). We decided to trust her, not the doctors, when trying to determine what she is capable of doing right now and how much pain she is in. We didn’t push as much and she didn’t resist as much. We held our ground when we needed to and gave her as much control as we could over things that didn’t matter. Everything went better. In fact, we had the best medicine taking time that we’ve had in days. She actually accepted that she had to take it and was a trooper. She even opened up a little and told me she was really mad at the leukemia and mad at being sick. Amen little sister… you said a mouthful.

I think we’re finally realizing this is going to be a long, long process and there will be good days and bad days. On the good days we should make the best of them and not take them for granted. On the bad days, we’ll just hole up and sleep and cry if that makes us feel better… another good day will come.

Thank you all for the unending outpouring of support, good food, thoughtful gifts and prayers. We could not do this without you… really. And, if for some reason, we don’t remember to thank you with a personal email (I am not even going to attempt to write actual thank you notes for the many, many kindnesses, even though my Mother taught me better), please know we appreciated it mightily, but were busy kicking cancer’s butt and didn’t get it done. Please forgive us.

I’ll leave you with one sweet thought that came from the innocence of my two-year-old son. Jake adores Tanner and is so confused by her sudden disinterest in playing. Today when she was laying on the sofa, he reached down and gently rubbed her leg and then patted her really softly. He then laid his head down on her leg and smiled one of his best irresistible grins. Then, he stood up and said, “Yay! Jake made her better!”

Yeah, buddy, we’re all making her better with love.

Beth

We’re Home

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Well, we’re home! Came home yesterday afternoon. Tanner was in the worst mood all morning at the hospital, but as soon as we got into the wheel chair to go home, she became her normal self again. Hugged the nurses and thanked them for taking such good care of her, played with her new iTouch in the car on the way home and had a tear-inspiring homecoming reunion with Jake. I thought, “This is going to be so much better than I thought. She’s going to be just fine.

Then, she got tired and took a nap. And woke up screaming, in pain, cranky, etc. My heart sank. The rest of the day was a battle. It’s so hard to know what to do. The physical therapist and doctor say she needs to get up and walk so she doesn’t lose her strength, but she feels so bad. Convincing a 5-year-old to do something they don’t want to do because it is for their own good is futile. So, we feel a little lost. Think I will call a friend whose child has leukemia and see how she coped. Maybe you just grit your teeth and barrel through until the end of this awful steroid course (another 25 LONG days) and hope she is more reasonable after that. She will still take steroids for 5 days a month in the next phase, but not every day like this. These steroids seem to magnify the kids’ worst traits until they act that way all the time. It’s great fun!

One good effect of the steroids is the increase in appetite, but we haven’t come to that yet. She still doesn’t seem to want to eat but one meal a day. I just can’t bear the thought of her losing any more weight. Today, we finally managed to entice her with the idea of a bagel with strawberry cream cheese from Panera. So, off John, his mom and Jake go to Panera to bring it back before she loses her appetite again. Once those steroids start making her ravenous, I’m going to let her eat like a banshee — fatten her up for the next phase.

But, still, it’s nice to be home. No one woke us in the middle of the night to take her vitals, flush her IV or stop the infusion machine from beeping. What a blessing. She was still up quite a bit with pain and nausea, but rested better for sure.

One note: we are flush with gifts for Tanner. People have been so generous. Some she just hasn’t even felt good enough to open. So, again, if you want to do something send a donation in Tanner’s honor to www.lilysgarden.com. Knowing that we might be able to help save some other family from this horror is the best gift we can get.

Love,
Beth

Great News!!!

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I just received a text message from Tanner’s dad that she is home!!!! She is much happier there. Until further notice that are not accepting visitors. She needs to rest and since her white blood cells are the primary target of the chemo, her immune system is being weakened. Great news indeed!

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