Hope4Peyton

Today was the first day of chemo treatments as an out patient. Peyton did very well with it. She's very quickly developed a fear of new people. They always seem to poke and prod her with things. So we took her up to the clinic bright and early. She was very nervous about the whole thing. We took her into the doctor's office and she was fighting us tooth and nail the whole way…that is until the nurse gave her some anastesia. Once that kicked in, she even said, "I'm happy!". She got a spinal injection as well as her normal chemo.

So far her counts are looking great. The doctor says she is responding very nicely to the treatments. The chemo just wipes her out though. She's been very lethargic and sleepy all day.

So, it used to be that Peyton’s biggest worries were that Dora would get erased from Tivo before she got a chance to watch it and that Nathaniel and Rachael might get more than her. More of what? Who knows or cares, but if they got more of it, it was going to blow her day.

She’s had a rough few days here, which is a horrible understatement, but that’s the only way to put it. She’s scared of strangers, I think she’s worried about who’s going to do what to her now. When she feels insecure, she puts her hand over the little lump in her chest that is her port, just cradling it as if to protect it. She already knows that it all started when she got that port, so she must be careful with it. She cries at the least little discomfort….this from a child that cracked her head on a daily basis and shook it off like it was nothing. My fireball of energy winds down and just wants to lay on your lap, put her head on the pillow and rest.

I want my cheerful child back, the one with a smile all day long. I know it’s going to be a long road to a full recovery and she’ll learn to cope with all the changes happening in her body. A part of me worries that I’ve lost that carefree child forever, that’s she’s going to have developed these fears that will stay with her forever. What is the right way to help a 2 year old cope?

—-Anissa

For those of you who don’t listen to country music, there is a beautiful and heartbreaking song by a band Rascal Flatts called “Skin”. It’s about a teenage girl who gets Leukemia and loses her hair and it’s always been a song that’s touched my heart, but never so much as this morning.

When I first looked at Peyton this morning there were 5 little eyelashes stuck to her cheek. They’re starting to fall out. This is the first physical manifestation of her illness and it hurt to see. I wanted to sit down and cry for the whole day and just hold my baby tight, but I had to remind myself, that it isn’t the cancer making her hair fall out, it’s a sign of the treatment working to make her body well.

So, I will try to be thankful for each tiny fine hair that falls out, hoping that each one is just a reminder that she’s on the path to recovery.

—Anissa

This was the day after Peyton’s surgery.

Her mom and I had not yet learned that we needed to press the morphine button every 15 minutes. I had always thought of morphine as an negative thing, associated with addictions. She was already getting some morphine at 15 minute intervals. I relieved my wife and let her go do something with the other kids.

At first Peyton didn’t want me around, so I sat on her bed and started playing with a puzzle. She eventually started playing a little bit with the puzzle, but really wasn’t into it. She just crawled up into my lap and wanted me to hold her. She held onto my neck as hard as she could and said, “Daddy I hurt. Daddy I scared.”

They say you should try to not break down in the room, but I just couldn’t.

I also made sure to push that button every 15 minutes.

Early on the second day, Peyton had surgery and we got some information.

They installed a port in her chest. This made getting IV’s easier. While she was under, they also did a resting bone marrow and a spinal tap. The spinal tap showed no Leukemia in her spinal fluid, which is a good thing. They also diagnosed her with Acute Lymphoblastic Leukemia (ALL). This is the most common, most treatable form. Children between the ages of 2 and 10 tend to do better. Girls apparently do a little bit better than boys. There’s an 87% survival rate with this form of Leukemia. When Anissa and I heard that, we literally did hand springs. Which seems absolutely insane. “Your child has Leukemia…but it can be beat.” These kids don’t have the preconceived notions that adults have about this disease. In other words, ok, your child has cancer. Now, let’s fix that.

You would be surprised at how much information helps. The nurse practitioner spent a good hour or hour and a half just getting us up to speed on what was going on with our daughter. Explaining things, and probably having to repeat herself half a dozen times. Every nurse and doctor that we saw there helped us tremendously. I can’t thank them enough for their time and explanations.

She also started her chemotherapy that day. She’s going to be a “Friday Girl.” Every friday she’ll get her chemo therapy. They also loaded her up with steroids. The steroids are to help her system recover from the chemo. The chemo is pretty much like napalm to the system. It destroys everything in it’s path.