Ella had clinic today. Her counts were not "great", but they were okay. She got her meds, but they forgot her anti-nausea medicine, so we had to wait for a bit so we could get it in her before we left. She was happy to add another Build-A-Bear to her collection. We made a very quick trip and she stayed in her stroller the entire time. Her port or "medicine button" is accessed with a needle right now, so she doesn't like to move much. She is very protective of that area of her chest.
Now, she only has to go to clinic the next 2 weeks so they can check her counts and she won't have any chemo after Friday. We are getting closer....
She asked to go to bed tonight and I expect her to be tired the next few days, but she is handling this round so well. Her strength is greater than mine.
Ella and Dadda
I'm so happy that we are close to the last phase, but I wish it didn't last for almost 2 years. It is so scary to me that we have to give her chemo at home for such a long time. She will go in monthly for chemo and then every 3 months for a spinal and additional chemo. What is even scary is the long term side effects of the chemo. I had a brief conversation with one of her doctors today about the most common ones. Heart, dental, various organs, and fertility. Those are just the common ones. Cancer sucks.
Ella had a fun day today. She was in a good mood and got to play with Sara this morning (while I got my first haircut since last April), and she played with Rachel this afternoon. She was feeling good and had lots of fun! That makes it a good day.
Tomorrow is clinic, and it is her last "major" clinic day before she goes to the Maintenance Phase! YEA. I'm so happy, I kinda feel like crying. She will get to do normal things soon. We still need to be cautious, but she gets to be a normal kid (insert happy dance here!)
Overall, Ella did well this weekend. She had more energy, definitely more energy! She melted down on Saturday night, then the entire family melted down. Then she got sick later in the evening, but she woke up this morning just fine. She has clinic again on Tuesday. We really hope that her counts are good, because it is the last day for this phase and then we get to go to Maintenance! 629 days of Chemo left.
Ella has gotten really brave about not wearing her hat. Steve and I took her to Home Depot. All bundled up, with this cute new hat on (see picture) to run in and look for a handle. We were walking through the store, and I turned around and her hat is off. It was interesting to see others reactions to her shiny little head. Some gave looks of understanding, other just looked scared. It did make me wonder what they were thinking. If they would let their cancer kid run around without a hat on, or even be out in a store. It's not the first time I've thought about how we are doing "this". I'm not perfect. All I can do is try to give her a little a little bit of fun and normalcy while she is going through this. Trying to remember that this is her journey, and I'm sure that everyone would handle it differently.
The one thing that I hope, is that both "Understanding" and "Scared" would not judge us for the way we are taking this journey unless they have walked through a store with their bald child.
Some of Ella's Grandma's friends made this cute hat for Ella, and a matching one for me. So far, it is the only hat she will wear. It is so soft and I think she likes that I have a matching one and can wear them out together. On the upside, it covers my bad hair days!
Josh and I are counting the days til our special trip to visit Grandma and Grandpa in Florida. As soon as Ella is done with this phase, she gets a break before the next and final phase. So Josh and I are going to take a break and go to Florida while Ella and Dadda spend a special Valentines week together. She already has big plans for her Dadda. When she overheard that Josh and I were going, she said "Are you going to Florida with Joshie?" I think everyone in the room froze. We were all waiting for her to have a complete and understandable melt down. Instead, she said "Okay, but bring me back some glittery shells if you go to the beach". Pretty mature reaction for a four year old. Just love her to death!
This song was shared by another Cancer Mom whose daughter just completed her 2years+ of chemo and procedures, and came out the other side.
Here are the words:
You gotta swim
Swim for your life
Swim for the music that saves you
When you're not so sure you'll survive
You gotta swim
And swim when it hurts
The whole world is watching
You haven't come this far to fall off the earth
The currents will pull you
Away from your love
Just keep your head above
I found a tidal wave begging to tear down the dawn
Memories like bullets they fired at me from a gun
A crack in the armor
I swim for brighter days
Despite the absence of sun
Choking on salt water
I'm not giving in
I swim
You've gotta swim
Through nights that won't end
Swim for your families
Your lovers
Your sisters and brothers
And friends
You've gotta swim
Through wars without cause
Swim for the lost politicians
Who don't see their greed as a flaw
The currents will pull us
Away from our love
Just keep your head above
I found a tidal wave begging to tear down the dawn
Memories like bullets they fired at me from a gun
A crack in the armor
I swim for brighter days
Despite of the absence of sun
Choking on salt water
I'm not giving in
I'm not giving in
I swim
You gotta swim
Swim in the dark
There's no shame in drifting
Feel the tide shifting
And wait for the spark
You've gotta swim
Don't let yourself sink
Just find the horizon
I promise you it's not as far as you think
The currents will drag us
Away from our love
Just keep your head above
Just keep your head above
Swim
Just keep your head above
Swim, swim
Just keep your head above
Swim
Although she won't do it in a pool, my girl can SWIM!
Blessings~Katie
Ella did better today, she had a little more energy, but not much of an appetite. She doesn't like moving too much with her port access in and when she does walk, it is very hunched over. She was scared when it was time to give her the chemo today, but Steve did a great job.
Here is what her accessed port looks like.
Can't really blame her for being afraid to move. Her face and belly are still swollen from the steroids, but it has been going down. Today I made a comment about her losing her hair, and she was sure to let me know right away "I didn't lose ALL my hair!" She's still feisty!
Well, Thank God, we had power all night long. Everyone slept in our room last night and listened to the wind bang against the windows. The snow looks so cool! I took our dog for a walk and she had so much fun. This was the only time I left Ella's side today.
Ella stayed in our bed until 5pm, then moved down to the couch. She is really tired and sat slumped when she did have the energy to sit up. We played Barbies in bed and read more Rainbow Fairy books. She has a lot of meds in her right now and we really have to stay on top of the anti-nausea medication. They warned us that once it starts it is really hard to get it to stop long enough to keep the anti-nausea medication down. She ate very little and we doing our best to keep her hydrated.
Ella had clinic today. Today was the FASTEST we have ever been through clinic, especially considering she had a spinal and 3 chemos, plus she was scheduled to have 3 hours of hydration. Ella's counts came back good, so they did her spinal.
In recovery from the spinal
Then, the staffed work really hard to get us the "heck out of Dodge!" They decided to train Steve to administer the chemo instead of keeping us at Loyola till Thursday. They had scheduled a nurse to come to the house, but she cancelled because of the weather. She was also scheduled to receive 3 hours of hydration, but they gave her 1 and had us hydrate her for the rest of the day. We were out of there by 2pm.
Can you believe after 3 chemos and a spinal, she is still awake right now and playing flashlights with her brother? If you live in Chicago, you are probably doing the same thing we are right now- hunkered down in the house and praying that the electricity doesn't go out so you can keep the house heated! School has already been cancelled for tomorrow and Josh is so excited! I am too. I love when we are all "trapped" in the house together. Granted, if it is more than 24 hours we will probably be climbing the walls, but it is a great excuse to spend family time together.
I kinda see this as day 1 of the last 14 "hard" days of treatment. It's like a light at the end of the tunnel.
