In September of 2010 I attended my first Cure Search Walk. Ella had just been diagnosed 11 days earlier and my head was still spinning with everything our family was attempting to comprehend. At the walk, I listened to the words for "Black Bird" being sung in the opening ceremony and cried like a baby. I looked around at all the kids that were fighting for their lives and saw the parents standing behind them and holding them and wondered if there was any way I was going to be able to do this.
In September of 2011, I attended again, and this time I tearfully watched my friend release a balloon into the air in memory of the son that he lost.
This shouldn't happen. Please, help us make sure it stops. Every day, 36 children are diagnosed with children's cancer – 7 of these children will not survive. Cancer is the leading cause of death by disease in children. Although the cure rate is now 78% – up by 40% in the last 20 years – it is not good enough. Our goal is a 100% cure rate. Please consider walking or donating to help us defeat cancer. The walk is family friendly, so bring the kids! We thank you in advance for your support! Cure Search Donations/Sign-up Blessings~Katie
I am just venting. I know it is only hair and it will grow back. I know there are plenty of positive things going for Ella I am just struggling with this. Her hair is maybe 10% left.
Ella and Rachael swimming.
Today she was happy. It was take a friend to gymnastics day. They were walking in and holding hands and she was singing. Being a few steps ahead of me I had them wait for me at the door. Ella stopped and looked at her reflection in the window. I saw her physically deflate. She stopped singing and let go of her friends hand. She smoothed down the few pieces of thin hair that now seem to puff out- almost like they are looking for other hairs to cling to, and she just looked at me. This is what I can't take. I can't fix it, I can't make her not "deflate". Within 10 minutes she was fine, but it is burned into my memory that cancer sucked joy out of her today.
I know there are lots of poems that quote the things that cancer can't do. But, it is really good at making momma's feel helpless.
There are a few different schools of thought on ALL kids and going swimming. One end of the spectrum says no swimming at all. The other end has their kids in swim lessons and visiting water parks. Steve and I have always taken a middle ground approach. We will let her go into a pool, with several ring floaties on to keep her port above water. She can't take them off and she has to wear a hat, cover up and sunscreen. She also must shower right after. She also can not have any open sores or cuts on her arms and legs. These rules about swimming have worked for us because Ella has never been a big water fan and usually screamed if anyone got water in her face- until now.
On this vacation something happened, a switch flipped inside her last night and our rules that have kept me feeling safe about her in the water no longer work. We are visiting Grandma and Grandpa. Their neighbor has a pool that is beautifully maintained and they never use it. They spend most their time traveling so they have always been generous enough to let our family use it whenever we are visiting. We have been in it for the past 5 days using all our normal rules. Last night we decided to go for a late night swim. Since the sun wasn't out and Daddy told Ella we were all out of "moon screen" she didn't have to put sun screen, hat or cover up on. Well, that started something.
After being in the pool for 30 minutes, Ella asked to take her floaties off. I gave in to the batting eyes and dimples and told her she could take them off for just a little bit. That was it, the flip was switched in her. She spent 10 minutes walking back in forth in the shallow end saying out loud :I'm such a happy girl!". Then, she told her Grandma "It's like I don't have cancer". I lost it when I heard that. I don't think I realized how much she craved that little bit of normalcy. Then she asked for a pair of goggles. With small instruction from Daddy she was under water and swimming from one person to the other. I can not tell you how many times she laughed and said "I'm such a happy girl!". How many kids stop what they are doing to let everyone know how happy they are? Josh and Grandma kept saying it was a miracle and her cousin Sara got back in the pool to play because everyone was smiling and having such a good time.
One of the hard things about this is finding a balance between keeping your child safe, and still letting them enjoy their life. One part of my head is screaming at me that she shouldn't be in the water all the way, and the other is crying tears of joy because she is so happy. Well, happy won. She was in the pool and mostly under water for almost two hours. We didn't go to bed until almost 11pm. As soon as she woke up she wanted to get back in the pool. Right now she is just waiting for breakfast so she can go. This will definitely be one of my treasured memories of Ella.
Sorry for the late post. We have been on the go since Ella finished clinic last Tuesday. On Wednesday I left to for Iowa to do 2 days of RAGBRAI, a bike ride across the state of Iowa. I got back Friday night, Saturday morning we volunteered with the kids and a group of friends at a food bank called Feed My Starving Children and then turned around and left for Florida.
The girls of Team Mash-Ragbrai 2012
I was nervous about leaving for RAGBRAI. When I rode in 2009, my best friend got diagnosed with Colon Cancer when we got back. In 2010, Ella got diagnosed when I got back. Needless to say it was in the back of my head that something bad would happen if I rode again this year. Now, I know that that there is nothing special about RAGBRAI, but I still was worried abut going. Everything happens in 3's right? Anyway my team rode 90 miles the 1st day and 45 the 2nd. It was hot, but it was nice to get away and just be Katie for a few days. I wasn't a wife or a mom for those few days- just Katie on a bike ride with a few thousand strangers who didn't know my child has cancer.
Ella's clinic visit went well. Her counts came back at 1300, which is good. She had a spinal and chemo and she has grown AGAIN- so they had to increase her meds. She has 2 more procedures left and 1 surgery to remove her port before the end of this journey. As soon as we got the okay for her to travel, we decided to travel to Florida to visit Grandma and Grandpa. She is having a blast playing with her cousins and getting spoiled by everyone. Her hair is falling out a little bit more now that they changed her meds. The doctor said there is a chance it will not start to grow back until after she is done with chemo. Ella is not very happy about this, but I will tell you- she just doesn't seem to care or notice. She is so fun right now and she is in such a great mood. I hope this lasts the entire trip.
Since Josh was a baby whenever he would crawl and now walk away from me, I always pictures him getting older. Like being in Junior High, then High School and maybe married. I always pictured him older and walking towards me. Today Ella was walking away from me- holding her zebra stripped umbrella and going for a walk. I realized that I hadn't had these same mental images about Ella. I think it's more that I haven't let myself. Too afraid that it might not happen.
Okay, having a bit of doubt today, but it is really hard to be positive every single day. Please don't misunderstand, I know there are so many "Ups" to this journey, but sometimes I just need a down day. A day where I don't have to reassure someone that she is doing 'Fine" and where I can just be sad that my daughter and my family have to deal with cancer.
Today I was humbled and honored to speak in front of 160 woman. I was able to tell Ella's story, but from my prospective. The cool thing is that is was to a group of woman who all "got it". I know my friends and family understand, and God knows I love you all for it! But, to have the opportunity to be encouraging to other parents- to in some small way say "Maybe this is why? So we could reach out to other moms?" and make a little difference- well, it was a really great feeling.
I want to share a part of what I said today. When I was writing my speech, I was having a hard time thinking that what I could say that would be helpful. So, I asked my family what they would say if they were in my shoes. Here are their answers.
Josh-"You have to protect her. If they ask if she is a boy or a girl, you have to stand up for her. Also, she will get more toys than you and you have to try not to be jealous or mad."
Ella-"It sucks, it stinks and I hate it, but you have to take your medicine so you can kick it's butt." She knows she is not allowed to say sucks or hate, but I think she knew she could get away with it for this!
Steve- "Ask for help before you need it. Remember this isn't about you, it's about protecting your family."
My friend Katie- "Forgive your friends. The may not know what to do or say and they may feel guilty that their child is healthy."
My advice was this.
Allow yourself to:
Not be perfect.
Be mad, happy, sad and cry when you need to.
Ask for help
Know who your friends are, and they may be new ones.
Find your faith. These people will hold you up when you don't have the strength and pray for you when you don't know what to say anymore.
Tell your family you love them and appreciate them. Do this often so that even when your time is spent with your sick child, they all know they are important to you.
Write it down. See this blog for an example:-) No one can ever really understand how you feel except you- so let it out and write it down.
Give your child control of something. They have no control over anything in this journey, so let them control what they wear, or how they take their medicine. We still have to smell Ella's feet every time she takes her medication, and that's okay.
I left them all with this quote, which has become one of my favorites since Ella was diagnosed. I think it could be said for every woman in that room.
"You never know how strong you are until being strong is the only choice you have." ~unknown
Now for a little Kelly Clarkson who is playing in my mental MP3 player right now. Good Night and thank you all for your encouraging words.
This Saturday I will be sharing our families story with out 150-200 woman at a charity event hosted my Mr. and Mrs. Charles Tillman for mothers/caregivers of seriously ill children. I am humbled and honored to share our story, but I know we are the lucky ones. Part of what makes us lucky is our awesome friends and family who have prayed for us, held us up, and just read this blog- so THANK YOU!
There is no way Steve and I could ever repay you all for helping us through this journey.
