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Today’s chemotherapy

Today's entry just isn't as cheery as some of my past ones have been.

Peyton's chemotherapy visit today was just a heartbreaker. She knew what we were there to do, she was terrified of anyone who came near her and founght our nurse Cindi every time she tried to do anything for her. She cried and cried until she was a sweaty mess. She was upset, her steroids make her unable to deal with any kind of emotional changes and she's just having a hard time coping with these treatments. The doctor did let us know that it doesn't take long for the mood swings to wear off after she goes off the steroids and then we'll have our sweet little girl back. She did still enjoy the painkillers and had a half hour where she was a rolling bundle of laughter and giggles. It's almost worth the rest of the time to see her so happy during that time. It's the most she smiles all week.

We got what's called the "protocol" for the next stages of her treatment. It's basically just the outline of her treatment plan, they let us know what the medications are, how often she'll get them, how they're administered and what the effects of them are. It took two sheets and was just daunting to look at. Starting in a week or two, she'll be going for outpatient chemo every day for two months. Her medications vary as to what day day they fall on, some are oral, some are shots, some are IV, she will have a spinal tap every Friday for the next 6 months. She has to go under general anesthesia for a spinal tap and bone marrow aspirate on this coming Friday because of the importance of this procedure. This will be the day 29 of the "induction" period. They test to see if she's been successfully put into remission and if she is then she'll move into the next phase. If not, she'll be categorized "slow responder" and will have to go through an "intensification" period that is just blasting her system to get her into remission (which they consider getting her leukemia count to under 5%).

So, we're praying next Friday will bring a successful report on her bone marrow results. It will be the easiest path for her, she already has a much harder treatment plan because she is CNS positive, which is the high amount of leukemia they found in her spinal fluid, and that puts her in "standard risk high". She'll be on 5 different chemotherapy medications for the next phase of her treatment, they'll take her off the steroids and her blood counts will start to drop rapidly.

They've warned us that this is the point that she'll start to "look" like a cancer patient. She'll be pale, lethargic, she'll need frequent transfusions, her immune system will be extremely vulnerable, her hair will have fallen out and she will lose her appetite. It's just not a rosy outlook for the next couple of months. This may be the hardest part to adjust to, but then none of it has been easy.

If anyone local is interested in donating blood specifically for Peyton, she is type A positive. I would encourage everyone to donate anyway, because the blood banks are always short and never has it been such a pressing issue to me as "what if they run out and my child needs it". It sounds a little selfish, but sometimes it has to hit home to really hit hard. Peter and I are not allowed to donate blood for Peyton, in case she should need a bone marrow transplant we are her best chances and if she received blood from us it could cause her body to form antibodies that would reject the bone marrow. So, even this we can't do for her.

Please please keep the prayers going, it's a frustrating and emotional time for us. We have so much on our minds and so little we can actually do. Our amazing friend and family support system are just fantastic and we get encouragement every day. Thank you.

On a funny note, Peyton and I met some friends for lunch as a celebration for a completed treatment. We went to Olive Garden and my friends just stared in awe as this child inhaled a bowl of spagetti so fast it was amazing! This was before anyone else at the table had even ordered! Then as our food arrives, she's still eating! Olives, tomatoes, chicken, breadsticks…..and by the time we had finished she was sitting up in her chair, with her eyes closed, trying to go to sleep sitting up. It was hysterical! We do try to do something special after each treatment, she can't eat before so she's starving as soon as we leave. She so enjoys that first meal of the day…..actually, counting the one she has at 3AM, it's the second meal of the day.


2 Comments on “Today’s chemotherapy”

  1. #1 Grandma Pat
    on Aug 5th, 2006 at 7:21 pm

    Ohhhhh, Anissa, This sounds like such a very hard road you are on. My heart just goes out to Peyton, and to you and Peter and Nathaniel and Rachael, because of the utter incomprehension and fear Peyton must be feeling about everything that is happening to her. Please know that you all are loved and prayed for daily. Let us know if we can help in any way. You are so brave and humorous in your daily journal! You are amazing! I am sending some new clothes and hats for Peyton on Monday. I hope it will cheer things up a bit. You know a girl has got to love new clothes!


    Grandma Pat

  2. #2 Katie Frankiewich
    on Aug 6th, 2006 at 9:07 pm

    My name is Katie.

    I am Peter’s cousin. I live in Las Vegas.

    I want you to know how sorry I am that you are going thru this ordeal. It seams very hard to me that a two yoar old, YOUR two year old should be in so much pain.

    I want you to know I am praying fr ALL of you.
    I wish I knew you better.

    If there is anything I can do for you… PLEASE let me know.