Week of February 21, 2011



Family Photo

 Ella had a good week. We stayed in the house all week to make sure we gave her blood counts a chance to recover. She was so sick of being in the house when we took her for a ride on Saturday, she was begging us not to go home but to just go shopping to look at stuff.  One of her BFF's had her birthday party on Saturday too, so we let her go to the party.

She had fun playing and she got to decorate her own apron, cake and pizza. When I went to pick her up she didn't even see me come in. She was too busy hanging out and watching Morgan open her gifts. I just stood back and watched. When the gift crowd started to disperse, I saw 4 little girls go over to Ella. During the gift opening Ella had taken off her hat. They noticed, and went over to ask her what happened to her hair.  I saw it happening from across the room. I saw the look on Ella's face and knew immediately what they were talking to her about. She looked and me and started crying. She ran over and said "Mommy, I NEED my bandanna!" I carried her out of the room, but by that time we were both crying. The girls followed us out of the room and asked me what happened to her hair.  I panicked a bit, then I thought I would be all funny and try to make light of the situation. I told them her hair was magic and she decided to take it off and grow purple hair. It only took a second to see by their blank stares that they were not buying that answer, and the look Ella gave me said she didn't know what the heck I was talking about. So I told them that she was on a special medicine that made her hair fall out and that it would grow back soon.

It took her all of 2 minutes to recover from that little incident, but it took me 2 hours. We haven't had her in  a situation where she was with new kids that didn't know, we never prepared her to be asked questions because we have always headed those questions off by talking to the parents of her friends. I know I can't protect her from it, but I wish we had done a better job preparing her for questions.

Later on Saturday we had a friend from church come take some family photos for us. One of my favorites is above. We were also lucky enough to have Jesania over for a few days too.  I took this shot of her that I just love.  Ella was so excited that Jes was coming over for the weekend. She really loves her "Fluffy". We all got to go to church together today, and that was a really nice treat. Steve and I have been splitting going to church for the past few months, so actually going together was awesome!


Jesainia

 We have clinic again on Tuesday. Hopefully Ella's counts will be good, and she can start the next phase of her treatment. She gets a spinal and chemo on Tuesday, but then she will get chemo nightly at home and not have to go back to clinic for a month! I hate giving it to her at home, but glad that she will have a little bit of "normalcy" soon. We even saw some super tiny little hairs growing in on her head tonight! YEA!

Blessings~Katie

Week of Feb.13th

If you have stayed with us over the past week, thanks for coming back and checking in! I am going to start checking in once a week unless something is going on with Ella. My hope, is that...this is getting boring!

Josh and I left for Florida on the 13th, and Steve and Ella spent the week together.  For Valentine's Day, Ella came up with a list of things she wanted to do, and they spent the day marking them off one by one.  You can see her pancakes and pizza above. Everything Steve cooked had to be heart shaped. They best Valentine's Day gift for me was how Steve spent the day with Ella.

On Tuesday Ella had clinic. Her red, white and platelet counts were all low and she needed a blood transfusion. Ella fell asleep at clinic during her transfusion because her reds were so low. When she has a transfusion she has to stay for a bit afterwards to make sure she did not have a reaction. They were at Loyola from 9am-5pm. Long day for daddy and Ella. thank you again for those of you who have donated blood!  The rest of the week they had to stay in the house to make sure Ella stayed healthy. Steve got to play Barbies and Build A Bear for hours this week. Gold Star for daddy.

Josh and I had fun in Florida. We did Disney and Epcot, but the first thing we did was decorate shells with glitter and send them home to Ella. Josh had 3 adults catering to his every need. He was a pretty happy kid all week. Grandma and Grandpa spoiled both of us pretty good this week, and I am so very grateful to both of them. They decorated our rooms for Valentine's Day too. I even got flowers, heart pillowcases and little heart towels in my bathroom.  Thank you Grandma and Grandpa.

There is a great foundation that works to take care of the families of kids with Cancer called Bear Necessities. They asked to use Ella's picture to help promote their foundation and raise funds. So, we took a bunch of photos for them of Ella with their signature bear and soon they will be in a video. Here is one of them above. She was in a really good mood when we took these and she has nick named this bear "Fuzzy". As you know, Ella loves bears. So, kinda neat for Ella!

Steve and Ella picked us up from the airport. I don't know why, but it was kind of a shock when I saw Ella in the back seat with her shiny little cue ball head. I don't know why it took me by surprise, but I just started crying. It is just such a visual reminder. She was trying so hard to stay awake in the car on the ride home. When she realized she was falling asleep she started crying and staying "I wanna snuggle with Momma!". I had to promise her I would still snuggle even if she fell asleep so she would stop crying.

Ella doesn't have clinic again until March 1st. If her counts have gone up, this will mark the beginning of Maintenance for Ella. It is the longest phase of her journey (almost 2 years) but it is also the last. She will only have to go in once a month to clinic for chemo and take it daily at home. This phase is also a little scary because I won't know what/where her counts are for an entire month, and that uncertainty is scary.

I started working on making Ella's blog a book. When she is done, I am going to have it printed and save it for when she is ready to read it.

Thank you to everyone for your continued prayers, support, and words of encouragement.

Blessings~Katie

Day 165, 166 & 167

Ella is taking this round pretty well. She still insists that we "smell her stinky feet" whenever we give her oral chemo, so I thought this picture would be fitting! We have hung out at the house for the past few days, read lots of books and played with lots of Barbies. Tonight will be the last time Steve will have to administer chemo at home through her port.(YEA!)

Josh and I leave this Sunday for a little vacation with Grandma and Grandpa in Florida. More than anything, I am looking forward to SLEEPING! How sad is that. If I can do it in the sun, even better. Ella hasn't questioned that we are going without her and is really looking forward to spending this time with her Dadda. Her list of things she wants to do with him is growing.

So, the blog will be a little empty the next week or so. Ella has a check-up on Tuesday, but has a 2 week chemo break after that. I can see a flicker of light!

Thank you again to all our friends, family and prayer warriors who have stayed with us these past 6 months. Your love and support means the world. I well up with tears when I think about all the people who are out there praying for Ella and our family. Thank you.

Blessings~Katie

Day 164

I love her happy eyes.

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.

Blessings~Katie

Day 163

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!)

Blessings~Katie

Day 161 & 162

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!

Hope you all had a good weekend.

Blessings~Katie

Day 160-Swimming

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

Day 159

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!

Blessings~Katie

Day 158- The Storm

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.

Hanging in there.

Blessings~Katie

Day 157

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.

Stay warm and enjoy this time with your family.

Blessings~Katie