I feel like I need clarity. Like I can't just catch a breath. The past month has flown by and in the blink of an eye- Ella is one month off treatment. So I'll just write it out here and get the clarity I need.
The past 30 days have been crazy.
Ella, with a few days left in treatment, was admitted to the hospital with a fever. A few days before Ella finished chemo we put our dog down, because she had cancer in her rear leg. Then Ella completed her last chemo and we celebrated "No More Chemo" with our fantastic support system. A few days later I was off to Haiti on a missions trip, where I would see first hand the things I've only heard about. Those pictures you see on TV where they ask for money and support- they are all truth. Now I have taken those pictures myself and yearn for a way to make a difference. When I came home my son was 2 days into a fever that would last 10. Ella had her port removed and today Josh was finally diagnosed with strep and phenomena in both lungs after 3 doctors visits.
A friend asked me the other day why it seemed like our family couldn't catch a break. I laughed it off, because so many wonderful things have happened in these busy 30 days. My Beautiful Daughter kicked cancers butt! I was lucky enough to enjoy the companionship of a loving and faithful dog for over 10 years and come to a full realization of how much love she actually gave our family. We got to hear Ella laugh from her belly as she celebrated with her friends. I had the rare opportunity to serve and learn and grow from the example of other adults and children who taught me a little more about how our God loves us. I also got to meet the child our family sponsors and hug her and kiss her and tell her she is loved. And because Josh has been sick, I have been able to give him my full attention, coddle him and give him the time that I wasn't always able to give him over the past 2 1/2 years because so much needed to be centered around Ella.
So, in this crazy 30 days I guess I've kept it together- well, most the time. I've cried, I've laughed and I've grown because of all of these experiences we have had. I always find myself praying that God will use me for his will. Somehow, I feel like he has in the past 30 days.
I wish I had a recording of this, but can I just share with you all how awesome it has been to just watch Ella over the past 30 days! She seems happy all the time. She has been dancing more and singing more and just coming out with these crazy little sayings that she cracks herself up with. This is the child that I have missed over the 794 days of treatment she had and I am so excited to see how she continues to change!
Tuesday she will have her first non-treatment check-up to see how her body is recovering.
Blessings~Katie
Tuesday, November 20, 2012
Tuesday, November 13, 2012
Tuesday November 13th, 2012- Port Removal!
Today Ella had the port removed from the left side of her chest!
We arrived promptly at 9:30 am at the hospital for surgery, than sat there until noon. So frustrating. Ella had not eaten and she kept saying "This is the worst day ever!" I sent a message to our child life specialist Megan for back-up. Ella had run through all the things we brought to keep her occupied so it was Megan to the rescue. She came into the Pre-Op area and talked with us while Ella played her new game. Ella started getting scared and nervous and didn't want to take the medicine that helped her relax. Then Megan started playing I Spy with her and she even sat in the bed and rolled into the operating room with Ella because I wasn't allowed to go back that far.
The anesthesiologist swore she would not remember that I wasn't there, but wouldn't you know it, as soon as she got out she started hitting me in the butt and yelling that I wasn't there with her. She is too smart for those drugs. She cried and was very upset for 45 minutes after she came out of surgery. It took 4 grape popsicles to calm her down, and then she had to take more medicine which upset her again. Eventually we calmed her down, changed her into her new Brave nightgown and left for home.
A couple people have asked us if we are glad that it's "over". Having the port removed was definitely a milestone, but Steve and I both agree that this doesn't feel like it is "over" yet. Not because we think she will get cancer again, but because it will still play a roll in our lives for sometime still. We are in a couples group and we are reading a book on living without Fear (Fearless by Max Lucado). It is very timely for us right now. We still have 5 years of clinic visits and blood test results to get through before Ella is officially cured. For us, it just doesn't feel that "over" yet.
In about 2 week, Ella will have the opportunity to go on a Disney Cruise. It is with much gratitude that the Make A Wish foundation is giving our family this opportunity to spend together and re-bond. I think it will also give us our first taste of "Normal" in over two years. I am really looking forward to the 4 of us being able to just be together as a family and laughing and enjoying each others company. My baby gets to go swimming, and I don't have to worry about the water. I can buy fresh flowers, and have them in my home again. I can learn to let her have a cold and wait for her body, her amazing body, to just heal itself.
Thank you again for all your prayers.
Blessings~Katie
We arrived promptly at 9:30 am at the hospital for surgery, than sat there until noon. So frustrating. Ella had not eaten and she kept saying "This is the worst day ever!" I sent a message to our child life specialist Megan for back-up. Ella had run through all the things we brought to keep her occupied so it was Megan to the rescue. She came into the Pre-Op area and talked with us while Ella played her new game. Ella started getting scared and nervous and didn't want to take the medicine that helped her relax. Then Megan started playing I Spy with her and she even sat in the bed and rolled into the operating room with Ella because I wasn't allowed to go back that far.
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| Megan and Ella playing I Spy and rolling down the hall |
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| Ella and Daddy Pre-Surgery |
A couple people have asked us if we are glad that it's "over". Having the port removed was definitely a milestone, but Steve and I both agree that this doesn't feel like it is "over" yet. Not because we think she will get cancer again, but because it will still play a roll in our lives for sometime still. We are in a couples group and we are reading a book on living without Fear (Fearless by Max Lucado). It is very timely for us right now. We still have 5 years of clinic visits and blood test results to get through before Ella is officially cured. For us, it just doesn't feel that "over" yet.
In about 2 week, Ella will have the opportunity to go on a Disney Cruise. It is with much gratitude that the Make A Wish foundation is giving our family this opportunity to spend together and re-bond. I think it will also give us our first taste of "Normal" in over two years. I am really looking forward to the 4 of us being able to just be together as a family and laughing and enjoying each others company. My baby gets to go swimming, and I don't have to worry about the water. I can buy fresh flowers, and have them in my home again. I can learn to let her have a cold and wait for her body, her amazing body, to just heal itself.
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| Momma and Ella Post-Surgery |
Blessings~Katie
Monday, November 12, 2012
Monday November 12th, 2012
Tomorrow Ella will have surgery to remove the port in her chest that delivered chemo into her blood stream. This was implanted into her chest right after she was diagnosed. She is so excited to have it removed, but also a little nervous. Tonight she said she was mad. I asked her why. She said that she didn't want to wear the "boy dresses" that they gave her for surgery. She said "They are my ENEMY!!!". So funny to me that her biggest concern is that she might have to wear a hospital gown that is not girly enough for her!
Looking forward to being one step closer to done.
Blessings~Katie
P.S. if your looking for more on my trip to Haiti last week, you can find it at :Haiti
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| Ella after port was inserted |
Blessings~Katie
P.S. if your looking for more on my trip to Haiti last week, you can find it at :Haiti
Sunday, November 4, 2012
We are here!
Hello!
Our team made it safely to Haiti on Saturday!
Our flight out of O'Hare had technical "difficulties", and we were deplaned and put on another plane a few hours later. This only gave u a few hours till our next plane, so instead of going to a hotel we spent the night in the airport. This actually turned out to be a blessing. The hotel refunded all of our money and it made up the difference for the amount of money we were short from shopping for supplies for SonLight!
On Saturday we took a tour of the beautiful new Son Center. This worship center was built by volunteers and is an incredible facility were the Haitians gather to learn about God on Sundays. After our tour we went back to our rooms to get settled and wash up. We enjoyed a meal and worship time on the roof of the school.
On Sunday, we had the opportunity to attend Sunday School and go to service in creole. Then we learned our assignments for the week and went for a hike through the city of Port De Paix. I wish I had enough time to give you all the details of that journey. All I can say is that every picture you have seen on TV that every picture that you see on TV that pull on your heart strings is true. there were pigs and dogs roaming the streets looking for food and water. Kids had no pants and ran around in their underware. Garbage is everywhere. There are no police roaming the street to keep you safe. Kids come to school with no food to eat. It makes you wish you could do more, whatever it is- just more.
Tonight we will be worshiping together and preparing our hearts for serving tomorrow.
Please continue to pray for our safety and that our hearts will be willing and open to hearing what he needs us to do why we are here.
Blessings~The Team
Our team made it safely to Haiti on Saturday!
Our flight out of O'Hare had technical "difficulties", and we were deplaned and put on another plane a few hours later. This only gave u a few hours till our next plane, so instead of going to a hotel we spent the night in the airport. This actually turned out to be a blessing. The hotel refunded all of our money and it made up the difference for the amount of money we were short from shopping for supplies for SonLight!
On Saturday we took a tour of the beautiful new Son Center. This worship center was built by volunteers and is an incredible facility were the Haitians gather to learn about God on Sundays. After our tour we went back to our rooms to get settled and wash up. We enjoyed a meal and worship time on the roof of the school.
On Sunday, we had the opportunity to attend Sunday School and go to service in creole. Then we learned our assignments for the week and went for a hike through the city of Port De Paix. I wish I had enough time to give you all the details of that journey. All I can say is that every picture you have seen on TV that every picture that you see on TV that pull on your heart strings is true. there were pigs and dogs roaming the streets looking for food and water. Kids had no pants and ran around in their underware. Garbage is everywhere. There are no police roaming the street to keep you safe. Kids come to school with no food to eat. It makes you wish you could do more, whatever it is- just more.
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| Bus we took to the small airport to get to Port DePaix |
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| Small airplane to Port DePaix |
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| Sleeping at the airport |
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| Hotel where we are staying- Holiday Hotel |
Blessings~The Team
Thursday, November 1, 2012
Pictures from her last day party/Bone Marrow Test
Here are some pictures from Ella's party on her last day of chemo. She had a great time playing with her friends. Our neighbors TP'd our house and put sign's in our yard. The limo picked up her and her friends for a glow in the dark dance party that she will never forget. I am also including a pic of her taking her last dose of chemo!!!!!
On Tuesday she had her last Bone Marrow Aspiration. This will tell us if there is any residual cancer left in her marrow. I know there is a lot of excitement over her last day of chemo and Ella ending this journey, but for Steve and I we feel like it isn't over. I would love to say that it will be over when we get this test back, but for us it won't be. We will forever be left wondering if every cold or ache is the cancer re-attacking her body. The further away this day is and the closer we get to her 5 year date when the consider her "cured", maybe we will begin to slowly feel different. For now I can say for Ella- she is happy not to have to take medicine EVERY night and be limited on how late she can eat at night. She is happy that she will be able to swim and do other things that cancer use to limit for her. We are so glad that kids have this great ability to live in the day, and for Ella it is a cancer free day. For that I am grateful.
I will post her results as soon as I can. I am leaving on a mission trip to Haiti on Friday. I am very excited to have the ability to go on this journey. I am not under the illusion that I will be going to make a huge difference in the lives of the Haitians I encounter. I am sure this journey will make a bigger difference on who I am as a person and how I see the world. I will be photographing and blogging about this journey for our team at West Ridge Haiti Mission 2012 . Feel free to follow us on this journey from November 2-10th.
I am so grateful for every person that has read and followed us on Ella's Leukemia journey. Saying Thank You will never be enough.
Blessings~Katie
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| I love how she is looking at herself in this one, so I am posting it first! |
On Tuesday she had her last Bone Marrow Aspiration. This will tell us if there is any residual cancer left in her marrow. I know there is a lot of excitement over her last day of chemo and Ella ending this journey, but for Steve and I we feel like it isn't over. I would love to say that it will be over when we get this test back, but for us it won't be. We will forever be left wondering if every cold or ache is the cancer re-attacking her body. The further away this day is and the closer we get to her 5 year date when the consider her "cured", maybe we will begin to slowly feel different. For now I can say for Ella- she is happy not to have to take medicine EVERY night and be limited on how late she can eat at night. She is happy that she will be able to swim and do other things that cancer use to limit for her. We are so glad that kids have this great ability to live in the day, and for Ella it is a cancer free day. For that I am grateful.
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| No More Chemo/Cancer Cupcakes |
I will post her results as soon as I can. I am leaving on a mission trip to Haiti on Friday. I am very excited to have the ability to go on this journey. I am not under the illusion that I will be going to make a huge difference in the lives of the Haitians I encounter. I am sure this journey will make a bigger difference on who I am as a person and how I see the world. I will be photographing and blogging about this journey for our team at West Ridge Haiti Mission 2012 . Feel free to follow us on this journey from November 2-10th.
I am so grateful for every person that has read and followed us on Ella's Leukemia journey. Saying Thank You will never be enough.
Blessings~Katie
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| Ella's Celebration at church! |
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| Party at Sharkies! |
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| Party crew/Support Team |
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| Who us? We are just taking a limo to a party! |
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| Sign in our TP'd yard! |
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| Ella |
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