Category Archives: family

Almost a normal day

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Today seemed almost normal, in a way. Tanner had a lot more energy and her personality returned to her. She spent lots of time bossing Jake around telling him to bring her things — see, normal! But, not really normal… she still can’t really walk. She can go about 10-15 feet and then it’s just too much. Today, Jake gave her an old cane that was in our umbrella stand and said, “help Tanner walk better.” Seriously, he did. And she did. The cane is sitting by her bed as she sleeps right now. She used it all day. It really helped and gave her a sense of independence (she’s been holding someone’s hands until now). We’re really worried about her legs. She can’t walk partially because it is painful, but she also just seems to have a lot of weakness. We suspect it is a side effect of one of the chemo meds.

Tomorrow, we go back to Vandy for a spinal tap and chemo to the spinal column, a bone marrow biopsy to see how effective the chemo has been and her IV chemo. They expect to see less than 1% blast cells (down from 95% just a week ago). This just gives you an idea of how brutal this chemo is. She’ll be under for these procedures, so no pain there. I’m praying that she doesn’t have great discomfort afterwards from the bone marrow biopsy, but suspect she will.

So, the appetite increase they promised as a result of the steroids has finally arrived. Just in time, Tanner looks emaciated. She ate, and ate, and ate. Chicken and tater tots for breakfast. A cheese sandwich, oranges, banana, a slice of bread. Had ice cream sundaes at 9 am this morning (thanks Rosemary, for the ice cream and fixings). Why not? Then Tanner says, “Do we have any mini corn dogs?” So off to Sonic we go. I told Tanner at bed time we were having an eating party at 4 am. She can’t have anything to eat after 5 am and I don’t think she’ll make it until 1:30 pm when her surgery is without gnawing her arm off. She requested bread and gogurt. This is a weird new life, for sure.

Love,
Beth

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

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

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’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