It's hard to believe, but we are finally here. The beloved maintenance phase of treatment. The best way to describe maintenance is to compare it to a tree. If you cut down a tree, the roots are still there and the tree will grow back, even if you can't see the tree anymore. Leukemia ALL is the same. Every test available would indicate that she is cancer free. Maintenance is a two year, steady course of mostly oral drugs that will kill all the cancer roots. Amanda began the phase on Wednesday. Everybody at clinic was cheering for her. I have to admit, deep down I wasn't. Cheering about two more years of treatment and fearing relapse for years to come doesn't seem like anything to get excited about. What there is to cheer is that her treatments are fewer and less intense. She began the course with a lumbar puncture and Ara-C instead of Methotrexate. They are going to try it for a while, but she eventually needs to go back on the medication treatment course. She was still pretty miserable for a good 24 hours and hooked up to an IV pump for a few days, but she does better on the Ara-C. We are hoping that she will tolerate the medication better when her LP's are spaced apart more. They will be every three months now. yeah!
Her hair is starting to come back in. It looks blonder than normal. Cancer treatment can permanently change the color and texture of hair, so we'll see what we get. It should not fall out anymore. She is sleeping better at night thanks to a good psychologist and some occasional benadryl. She's on steroids again. It's maddening - 5 days every month. It's going to be rough because steroids make her sooooooo MOODY!!! She is close to returning to school. We have to wait and make sure that her counts don't drop too much during the first two weeks while they regulate her medication dosing. Her counts have to stay in a therapeutic range - not too low, not too high. We are looking at having her transition back around the first of December. She can't wait! She is getting very lonely again. I want her to be out and about more, but everywhere we turn people are sick. Erin ran a fever yesterday. We cannot avoid it despite our best efforts. Loneliness verses illness - it's going to be a long two year battle!
Maintenance is definately less intense for our kids, but for us moms the pit in our stomach never seems to go away. I am seriously thinking about packing tylenol next time we come to the hospital. Kristen was not comfortable at all and as soon as she got some tylenol she was finally able to rest.
ReplyDeleteI hope I wasn't rude the other day in clinic. I knew if I said anything about our situation I would break down and cry once again. I have been trying to keep my composure in front of Kristen.
Thank You so very much for the letter. It was very comforting to me. You also deserve a place on "angel row." All of us cancer moms deserve a place of our own, a place together. No one can possibly know what it is like until they have wore the shoes of a cancer mom. I got this poem from of course another cancer mom:
A Pair of Shoes
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each
day I wish I had another pair.
Some days my shoes hurt so bad
that I do not think I can take
another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they
are glad they are my shoes and not
theirs.
They never talk about my shoes.
To learn how awful my shoes are
might make them uncomfortable.
To truly understand these shoes
you must walk in them.
But, once you put them on, you can
never take them off.
I now realize that I am not the
only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try
and walk in them.
Some have learned how to walk in
them so they don't hurt quite as much.
Some have worn the shoes so long that
days will go by before they think about
how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a
stronger woman.
These shoes have given me the strength
to face anything.
They have made me who I am.
I will forever walk in the shoes of a
woman who has a child with cancer.
*Author Unknown*
I am pretty sure my shoes were hurting a little extra that day in clinic. I apologize. One thing I am sure I have become is well worn and stronger than I ever wanted to be and I am sure you can say the same. I believe we belong to a sisterhood. We become united each day as we face challenges with our whole heart and soul, learning to live one day at a time and enjoy one moment at a time. I do not know what the future holds for Kristen, I know that is is a long dark road, but I also have enough faith to know that Kristen and I will not be given more than we can handle. I take great comfort knowing that there are caring people like yourself that can lift me and a sweet little girl like Amanda that can pray for one of her sister friends. Thank You so much for your support.