Tuesday, October 9, 2012

Moving Along With Our Fingers Crossed

As the end is coming for Zoe and her chemotherapy treatments, I've started thinking more about the side effects, the physical effects. The physical effects that dribble over into her feelings. From the everyday brain fuzziness that chemo provides to the life threatening side effects she's had from some of the drugs. It's been a long process and I hope I'm not jinxing anything by writing about such things. I hope I'm not angering the leukemia Gods and that they aren't proclaiming "we aren't done with this kid yet!" Superstition has taken a hold of me throughout this whole thing and I can't speak of things without knocking on wood, literally. Maybe that's why I don't talk about the "bad" stuff openly. I don't want her body to hear me. This is exactly the reason we aren't having a party to celebrate the end of treatment. I feel that this would be like us laughing in the face of cancer. Loud and hard laughing up close to cancer's face. Angering and upsetting the cancer. As if we are mocking it's abilities to rise again and destroy our daughter. Cancer has done enough damage. We don't want or need anymore.

On a daily basis Zoe gets "fuzzy" in her brain. She starts to tell us something and just stops and we can see her searching for the thought that she just had. She has something to tell us and it's gotten lost rather quickly. We patiently wait. Sometimes try to throw out words to bring the thought back. Sometimes it returns and she's able to finish her ideas or other times it never comes back. She just shakes her head and says "I don't know what I was going to say" and we tell her it's okay, happens to us old folks all of the time. She smiles as if to please us. To reassure us that she's not upset. We usually end the whole event in a big hug.  Maybe this forgetfulness will get better once she's off chemo.  The radiation she had last year may make this forgetfulness stay around as it's affects aren't seen until much later.

As the weeks and months pass by we have noticed that she doesn't remember much of the treatments and hospitalizations from the start of this ordeal.  She doesn't remember the surgeries, the day she was diagnosed, the overnights because of fever, the 2am drives to the hospital because of a 103 fever, the first time she lost her hair, the time off from kindergarten, the home health care nurses who would come and give her IV antibiotics or draw her blood, the last minute drive to the hospital because her port was accessed (meaning she had a needle taped into the port in the middle of her chest because she was getting some IV meds at home) and she vomited so hard that the needle popped out of her chest.  She doesn't remember any of it. 

She sees pictures of some things and then she remembers.  Like the time that she and I were staying in the hospital for the start of 2011.  There was a huge blizzard and my high school friend Mark and his son brought her a cooler full of snow to play with in her hospital room.  She has her radiation mask.  She remembers how scary the CAT Scan was for her when she had the hard plastic mask placed over her face and she had to sit still for a scan of her brain and the mask had to be molded to her head.  This was by far the scariest thing for her.  She was completely terrified.  The mask had her plastered to the table, she couldn't move her head, it was pressing into her face, she was put into a giant loud machine and told it would only take 5 minutes...5 minutes that seemed like 4 hours.  My fear for her was 10 on the scale and I believe her fear was at a 20.    

Radiation.  That was horrible.  It was easy for her to do, but the word radiation scared the crap out of us.  Still does today.  She had to sit on a table for just a few minutes and the machine went over one side of her head and then to the other.  It wasn't scary like the CAT Scan.  She said that when the machine was on and the radiation was actually permeating her head that she could smell a nasty toilet.  She said that the radiation smelled like a sewer.  The radiation techs said that other people who get radiation to their brains have mentioned this smell as well.  But no one else can smell it.  Makes your mind go into overdrive about that smell, doesn't it?

And then there's the PEG.  Zoe had a horrible reaction to a chemotherapy drug PEG-Asparaginase in November of 2010. The PEG is administered as two injections, one in both thighs given simultaneously. It's a shitty way to get a medication, but that's how's it done. She hated these injections. She had already had two doses of this drug when on the 3rd time around she had a reaction. Thank goodness we were in the Day Hospital with all of the nurses and ICU literally around the corner and not in the clinic downstairs. That would have been very bad. Because within 30 seconds of the shots being administered she said her throat felt funny and it was hard to swallow. That was followed by vomiting and she started breaking out in head to toe hives. The nurses were on it like white on rice! Everyone turned into super nurse and Dr. Brandt turned into super doctor. She spent the next week in the hospital, most of it in ICU. She would break out in hives on her feet. It would go away. She would then break out in hives on her face. It would go away. She would break out in hives on her arms and legs. It would go away. You get the picture. It wouldn't stop. She was miserable. She was given enough benadryl to knock out an NFL linebacker and she wasn't tired and she wasn't getting better. Eventually the hives did stop. The throat closing wasn't bad. It went right away after she mentioned it and the nurses rushed in with the solution via IV drugs to counteract it. We are lucky she didn't get worse with that part of the reaction and need a tube down her throat to breath. The hives we would take. She missed Thanksgiving that year. Her father and I had turkey with all of the sides from the hospital cafeteria on paper plates. I was dealing with a lot of interns at that time because it was a holiday. One was not letting Zoe eat anything until she stopped "hiving" because she had some textbook fear that her throat would close up. Mama bear stepped up and we did give her some turkey to eat on Thanksgiving and the next day when she was starving (on day 3 of no food) I said to the intern "She IS going to eat and you ARE going to allow it!" Both of our oncologists had never seen such a reaction from PEG. Ain't that our luck. Because of that reaction, she had to get an experimental drug instead of the PEG (experimental according to the FDA, even though it is used widely in Canada and Europe) and that consisted of fighting with the insurance company to pay for a non-FDA approved drug and the drug now consisting of 6 injections in both thighs given over a two week period instead of the 1 injection that almost killed her. She had to have the 6 injection set two more times. It was a bad time.

There's so much else I could discuss here in terms of effects of chemo and watching a child go through cancer treatment.  The broken bone, the mouth sores, the hallow expressions, the dark circles under her eyes, the baldness (twice), the vomiting, the fear, the unknown.  It takes a lot out of us as parents to watch her go through this.  It takes a lot out of her to go through this.  It has taken a lot more out of us watching our friend Jake suffer as he did and not make it.  Watching his mom and dad do everything in their power to keep him with them and then having to succumb to the worse possible end, losing him forever.  I hope I never have to go through what they have been going through.  I hope the cancer stays away from Zoe.  That she can grow and have her dreams come true in the future that is Zoe-land.  Cancer is a scary thing, but when you have yet to even live your life because you are a CHILD and you are knocked down by it, it's even scarier.  Let's hope it stays away forever.  It's all I can do...hope.  And keep my fingers eternally crossed.          


  1. I don't understand. I can't imagine. As a mom, I just read this post and wept. I know you didn't write it for that reason - the tiny bit I 'blog know' you knows that. So don't be upset that I did. :)

    Thank you for sharing so honestly. Thank you for giving us a glimpse into your life and your heart. Sharing what your 'new normal' looks like helps people like me not to stare, to appreciate what we do have, and to just be better aware of what others are going through.

    Thank you for including pictures of Zoe's beautiful smile!