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.

my 'one word' & becoming

I have loved the idea of having 'one word' for the year, and have done it the last couple of years.  In 2011 my 'one word' was gratitude, using each month to focus on specific things to be grateful for.  Last year it was more like a phrase, beat anxiety pushing me to do what it took to work on overcoming my anxiety.

There are many reasons why I love having 'one word.'  I loved how I had something to help me remember what I want for the year.  I also love that just because it is only 'one word' it does not mean it only stands for one thing.  In reality it can mean so much.  It can be versatile, and grow in meaning throughout the year.

As 2013 started to approach I began to think about what I want for the year, and kept cycling through different words.  It took me a while, but when it came to me I knew it was right.  It encompassed what I want to work on this year.  So my 'one word' for 2013 is light.

I want to fill my life with light.  I want to recognize light in my life.  I want to share light.  I want to capture light.  I want to feel light.  And more....

While deciding on my 'one word' I also thought about other resolutions for the year (trying to see what word fit with my goals).  At first I was overwhelmed thinking about the things I want to do until I found another way to look at my goals.

It helped so much when I decided to ask myself questions like...
"What habits do I want to have by the end of 2013?"
"What do I want to accomplish in 2013?"
"Who do I want to become in 2013?"

Now I don't have the pressure to do everything on January 1st, and never miss a day the whole year.  I have a whole year to work on these things.  If I miss a day (or more) it's okay, I can try again the next day, week, or even months to work on the goal.  The point is to work on becoming who I want to be.

I love this quote I found on Pinterest....

http://frenchbydesign.blogspot.com/

Elizabeth's December

December ended up being a simpler month for our family since Elizabeth's diagnosis in October.  Here are some things that happened this month...

• Elizabeth only spent 3 nights at the hospital
• 2 nights at the beginning of the month due to a fever
• 1 night a couple weeks later for transfusions
• Aunt Shell came to help out for a week and a half
• Elizabeth was chemo free during Christmas time (from the 19th to the end of the year)
• Had a wonderful Christmas as a family at home (hide & seek, and wrestling were a must after unwrapping lots of fun gifts)
• Grandma came to help us the day after Christmas
• Finished 2012 with a simple but fun party at home (dancing, and Elizabeth playing dress-ups were the highlights)