Category Archives: reality

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