Operation 'Bald US'

It was October, just within a few days (or less) since we found out Elizabeth had cancer, and I had gone home by myself for the first time since we took Elizabeth to the ER.  While I was at home I found I had more tears to cry as I pondered the concept that my little girl had cancer, and what all that meant for her.  During these thoughts one of the things that came up was hair loss. My daughter was going to lose her hair. This is when I came up with a plan that brought me some peace, determination, and some sense of control at a time when I felt I had no control in this situation.

My decision. I had firmly decided to donate my hair.  All of it.

When Elizabeth lost her hair, I would shave my hair off.  Elizabeth liked it when we matched; clothes, hairstyle (usually ponytails were involved), nails, etc.  Shaving my hair off after she lost her hair would let Elizabeth and I be able to be twiners, match, look the same.

This is something I really looked forward to doing during all of the many months of Elizabeth's treatment.  We all thought she would lose her hair quickly within the first months of treatment, but her hair hung on much longer.

Now, fast forward about seven months.  It's May and Elizabeth loses her hair.

When Elizabeth's hair fell out, I started talking to her about the possibility for me cutting off all of my hair.  I didn't want to surprise her with it since it was something I was doing for her, as well as me.  So I asked her if she wanted me to cut all my hair off to be like hers.  She said no. So, I didn't.

After Elizabeth's hair loss, she became attached to my hair.  She loved to play with my hair and brush it a lot.  More than she used too.  I knew I could not take that away from her.

I felt sad that I wasn't going to be able to do what I had decided to do, but I was okay.

Fast forward, again. It's now sometime in this last week.

Elizabeth is playing with some of Brian's tools and asks me if she can cut my hair.  I say yes, but not with those.  She followed me into the bathroom and gets a couple squares of toilet paper, and then puts it onto my head. After seeing the white of the paper on my head she declares that my hair is cut.  This is when I realize that she hasn't been playing or brushing my hair as much.  Maybe she will be okay with me cutting off all of my hair.  I start to get excited, and talk to her about the possibility.  Elizabeth was up for the idea of cutting off Mommy's hair.

It's the fourth of July.  We are in the hospital with no sure idea when Elizabeth will be discharged.  Brian is leaving in just a couple days to fly to California for a couple weeks.  The doctor does not want to give Elizabeth a Leave of Absence for the parade.  So, how do we decide to celebrate Independence Day?  I decided that it was as good of a time as any to cut my hair off.  I was going to get independence from hair on Independence Day!

We invited our friends, Sam and Amanda, as well as my uncle and aunt, Kyle and Erin to join us in the small hospital room for this big day.

I was feeling so excited, but also a little scared that I would look funny.  Elizabeth looks so beautiful bald, could I possible look ok bald too?  But I was ready to move forward and do this thing!

After it was all done I felt wonderful! I do not regret this decision one bit!!!

(Photos by Amanda Voyle)

(Only photo by me since we needed a picture of Amanda, our wonderful photographer of the night)

The curling iron

While Elizabeth was playing in the hospital playroom she found a play curling iron. After picking it up she reached to grab her hair a few times to 'curl' it, but only came up with a few strands. She then simply put it down and moved on. She knows about her hair falling out, but she hasn't seen herself in a mirror this week. I wonder how she will react to see that it is practically all gone.

As I watched her grasp for her hair that is no longer there, I got really emotional. I had to fight back the tears since I really did not want Elizabeth to become upset about her hair because of me. I know she is still adorable without hair, it is just a big and fast change, and a very visual reminder that Elizabeth is fighting cancer.

My Struggle with Decadron

Decadron (or Dexamethasone) is the steroid that Elizabeth has to take as part of her treatment. Decadron is great that it may kill some cancer cells, and increases the effectiveness of other chemotherapy drugs as well as help raise the immune system. I am grateful for all that it does in treating Elizabeth's leukemia, but there are side effects that are hard.

Of all the drugs Elizabeth takes she has the most side effects from Decadron.  The side effects that Elizabeth is experiencing include an increase in appetite, difficulty sleeping, red cheeks, headache, red hands, weight gain, puffy cheeks, muscle weakness, less able to deal with stress, irritability, personality changes, mood swings, fatigue, and it may be causing the bone pain.  Some of these are not very bad, but some of these side effects are a real struggle to deal with. Because of all the side effects Decadron is my least favorite of all the drugs Elizabeth has to take, and it's not even chemo.

Dealing with Elizabeth's emotions while she is on Decadron is the hardest part.  She becomes very emotional about lots of things, quickly getting angry and sad.  She wants me to be the one to do everything for her (get her food, change her diaper, tuck her in, carry her, etc.), not even letting Brian do things for her a lot of the time. She gets very upset at others, yelling, hitting, saying she doesn't like them, etc. She wants things done her way and really does not like being told no.  When she gets upset it can be hours of working to calm her down.

As I have described some of this to other people, they have casually stated something like, "Sounds like a normal three year old." Honestly, that is hard to hear. It is not normal. If you have experienced it with your own child being on Decadron for more than a week, then we can discuss whether or not it is normal.  Dr. Gera has seen Elizabeth on and off the Decadron, and she knows this isn't normal Elizabeth. It was so nice to have her turn to me, the other day while we were in the hospital, and ask if I was going to be able to be relieved for a time.  She understood how much of a burden it is taking care of Elizabeth with her Decadron emotions.  It's not that I don't love Elizabeth, because I do love her very much that I want to be able to have the strength to care for her. It's so draining, and sometimes I need to replenish myself to be able to continue to care for her, but doing that is hard at times.  This last week there have been nights that I have been up with Elizabeth and just broke down crying. I look forward to having the side effects of the Decadron fade away.

project 52 | five

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I love when Elizabeth and I sit down together and each lose ourselves in our individual pieces of artwork.  I love that this is a passion that I can share with her.  Playing with mixing colors, different brush strokes, sometimes doing finger painting, etc.  I love it!  I have such a feeling of freedom when I let my brush dance along the paper, adding vibrant colors & life to the white pages in front of me.

project 52 | four

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I have been wanting to find ways to make cleaning not quite so tedious for me, and I think I found something to help.  On Monday I asked Elizabeth if she wanted to help me, and she was thrilled to help.  She kept asking me for new dishes to wash, other places that needed to be wiped down.  Having her enthusiasm was such a great way to clean.  We got all the cleaning for Mondays done, and had plenty of time to play after.

project 52 | three

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One day Elizabeth spilled some sequins on our living room floor.  By the next day they spread throughout our place.  As I walked through the living room the day after the spill, the sun was shining through the windows and reflected so beautifully off of the sequins spread around.  It made me stop and smile.  I loved it!  It certainly brightened my mood.

Treatment Phase II - Consolidation (Part 2)

Here's the second months chemo schedule of the  second phase of Elizabeth's treatment.

1.2.2013 | Day 29 - IV chemo, admitted to hospital overnight
1.3.2013 | Day 30 - IV chemo before being released from hospital
1.4.2013 | Day 31 - IV chemo at Infusion Center
1.5.2013 | Day 32 - IV chemo, at Infusion Center
1.9.2013 | Day 36 - IV chemo at Clinic
1.10.2013 | Day 37 - IV chemo at Clinic
1.11.2013 | Day 38 - IV chemo at Clinic
1.12.2013 | Day 39 - IV chemo at Infusion Center
1.16.2013 | Day 43 - IV chemo at Infusion Center
1.23.2013 | Day 50 - IV chemo at Clinic

As you can see she only has one more dose of chemo for this part.  If Elizabeth's numbers are high enough, she will begin the next part on January 30th.

Me & my girl

I love days having a good time with my little girl.  Pictures of silly faces.  An unsuccessful nap while having quiet time.  An unexpected nap shortly after snuggling together.  Yep.  I love my girl!

project 52 | two

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We have been able to see the sun a little more this last week, and it has been great!  One day when I saw the sun shining through the window I quickly grabbed my camera, got Elizabeth ready, and grabbed the stroller.  We were going for a walk!

I know the photograph that I chose for this week is far from being in focus, but I love it.  It speaks to me.  I love the light shining on Elizabeth's unruly, windblown hair.  I love the laughter that seems so alive.  I love that it shows that Elizabeth is a lively girl that loves to be in motion.  It's so alive to me. This is Elizabeth.  This is life.

project 52 | one

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While in the hospital with Elizabeth Wednesday afternoon, I could tell Elizabeth was getting tired.  I got up from the chair I was in, sat on the side of Elizabeth's bed, tucked her in, and started to sing softly to her.  As I sang I enjoyed the time to gaze at my beautiful little girl.

She had a tough day since she had to get a 'poke' twice (the first one wasn't in her port right).  It's hard for me to see her go through these things.  But as I watched her nod off, all of that faded.

I felt so much love for my little girl in that little hospital room.  My heart was so full that it felt as if it would burst, and tears came to my eyes.  That tender moment with Elizabeth brought light to my day.