Our Champion is Home!

We were able to bring our little Hero home on Tuesday, May 12th. What a wonderful day. We spent most of our time laying low and just enjoying out little Angels at home. It has been wonderful! Kate is very happy, and is getting plenty of stimulation! She is sleeping in her big girl bed and sleeping all night, except for the occasional glass of water. We are so proud of her! She is so happy and energetic, and such an inspiration to us. The two times that we left the hospital during her treatment, she was kind of a terror. It was understandable because she hadn't had any stimulation outside the hospital in months. She would flip out when we left the store, she wouldn't sit in the cart at the store, throw fits if we couldn't go outside... etc. Now, I think she understands that we're home for good! She is much more patient and understanding. She'll sit in the cart at the store, and wait until we're ready to go outside, etc. She is coming around and starting to realize that she'll have a lot of chances to do the things she wants. She is eating much better now than she was in the hospital! I can't wait for her to start putting on some weight!

Yesterday was the most incredible day ever. I truly don't think I have ever experienced anything that has touched me so deeply, or that I felt truly connected to. We went to the Celebration of Champions in Seaport Village. It was a huge Celebration with a "passing of the torch" for the kids, a carnival, lunch, and a lot of wonderful people. We brought an EZ-Up and set up a spot for any family & friends that came with us. At about 11:45 another Champion passed the torch to Katelyn in a relay sort of race... Katelyn held this torch, along with my and Todd's hands and walk/ran to the finish line! It was amazing! Katelyn was very shy in the beginning, holding the torch and looking down in embarassment as hundreds of people stood on the sidelines taking pictures, clapping, and chanting encouraging words & praises. By the end of the race, Katelyn was happy to run to the finish line with the torch in her hand and smile on her face! It was incredible. I have truly never felt anything so powerful. Before all the kids in treatment & off treatment did the relay race, the families of the children who have passed did a walk. Wow. I don't even know what to say. It was heartbreaking and inspiring to see these people there without their children. Heartbreaking because I can almost feel their pain when I think about being in their shoes, and inspiring because they find a way to live every day. I don't know how I could be as strong as they are. We knew multiple families that lost their child since Kate started treatment. They are the strongest people I have ever known, and I love each of them. Really, I don't know what to say... Each child walked with a sponsor and a celebrity. We were lucky enough to walk with Nick Hundley, from the Padres, during our relay! What a wonderful man! He was incredibly encouraging to Katelyn, and nice to each of us. He was wonderful. After the Celebration Todd & I took the girls home for a little break before we went to the Padre game! Bud Black donated 400 tickets to the Celebration for the Champions and their family. Before the game all the Champions went on the field for a little pre-game show. Todd took Katelyn out there while Kiera and I filmed from above the dugout. I look forward to putting all of these videos on disc for her to watch later in life. Although the last 7 months haven't been ideal, she has really experienced a lot of incredible things, and so have Todd and I.

I look forward to being apart of the Celebration of Champions and other events forever and ever. Although I never would have wished this upon my family, or any family, I want Katelyn to be apart of it forever and ever. This experience has changed us immensely, and I want Katelyn to know how important life is, and how important it is for her to be apart of these things. At only one year old she has inspired so many people and given strentgh to people who cant find it on their own. Imagine her story in 5, 10, 20 years. Imagine the strengh that she can give other children, and the hope that she can give to their parents. I am so proud of Katelyn, and I hope that one day she wants to help and inspire people all on her own. Maybe the reason God helped her through this is because he has big plans for her. Maybe those plans are to help kids and families that are dealing with childhood cancer. In time, we'll know.

It was wonderful to see all the kids and their families, as well as the nurses outside of the hospital. We have become good friends with a lot of families & I am so thankful to see most of them coming to the end and winning the battle with childhood cancer. We pray for each and every child every single night, and we'll never stop. Thank You all for your support during this time. Thank You for supporting Katelyn. I hope that we have made a positive impact on each of you, we couldn't be more grateful for the impact that each of you has had on us. Thank You, friends!

Love,
Krystal

Coming to an end...

We are so proud of our little Angels. Katelyn has grown and stood strong through so much, and we are so proud of her! Her fevers and symptoms are gone and she ends her antibiotics on Sunday. If all goes as planned and her counts continue to rise, we should be able to take her home on Monday! We are soooo excited! Katelyn is very excited to go home as well! She wants to "pet Shampu"(pet shamu)!!! We've been talking about Sea World for weeks and we are all very excited! As soon as her hickman is out we are running to Sea World to buy season passes so we can go all summer long! I can't wait! She's saying all kinds of things, and talking in short sentenses. "Oh, my goodness!" is one of her favorites! "I take a walk please", "I play with Zara please", and the list goes on and on. We are so proud and impressed by her. She's not even two and she has endured and learned so much in the last 6 months. We have a poster board with photos of Kate since the beginning of her stay, up until now, and it's incredible to see her change through our stay. Again, I can't say it enough, we are VERY proud of her! Kiera is incredible as well! She's also growing and changing every day. She is smiling all the time, and cooing and talking to us. She tracks me all over the room. It is amazing to see her change and learn as well. I know Kate and Kiera will be the best of friends as they grow up. Kate already wants Kiera to paint and eat with her. I can't wait (but, really, I can wait) to see them interact as they grow up together!

We will definitely be going to the Celebration of Champions on May 16th! Anyone who wants to join is more than welcome. We will also be planning a birthday party/ Celebate Kate party in July. Everyone is welcome to come celebrate with us then! I'll post more as I plan it!

We are so thankful for all of this to finally be coming to an end. We are SO thankful that our Katelyn has done so well and fought so hard through all of this. Our almost two year old beat cancer! WOW! Thank You God! Thank You Friends & Family for your support and prayers! Thank You Hem/Onc for taking AMAZING care of our Angel, and for keeping her happy and strong. We are forever endebted to you all!

THANK YOU!

Love,

Krystal

"I'll let them know."

Kate has an ANC! Yay! It's only 23, but it's exciting that she is building one! We're finally on our way up, and soon to be out of the hospital Yay! We are excited to see a positive change in her counts!

She had a fever the other night, and unfortunately her blood cultures came back positive for another bacteria in her line. In my last post I explained the gram negative rod wrong. Kate doesn't have gram negative rod and e-coli... e-coli is the gram negative rod. The other bacteria she just tested positive for is gram positive cocci... and we don't know what exactly the bacteria is yet. Kate is now on three major antibiotics and we hope that these antibiotics will kill the bacteria so we can leave her hickman in for the rest of her treatment. If her cultures continue to come back positive then we will probably have to take her line out early. Although we can't wait to have the hickman out, we don't want to take it out early because she will have to get iv's to do labs and her future tests.

I have a funny story about Dr. Todd Devermann! He's so funny. He is, obviously, very concerned about Katelyn, and very in tune with her treatment. He does tons of research all the time on the different drugs she's getting and procedures she's having. He understands what is going on at all times and is very adament when he isn't comfortable with something. The nurses and doctors are often times impressed with his knowledge, and sometimes annoyed by it. He often corrects things and changes things to the way he feels is best for Kate. He asked the doctor today if we could do the blood cultures in the early morning when labs are drawn, instead of entering her lines later in the day. (It's best to enter the lines as little as possible in order to reduce the chances of infection.) Our doctor agreed that that was a good idea, and as she was walking out the door to write the order & let the nurses know, Dr. Devermann says "I'll let them know". The doctor laughed and so did I. Once she left I laughed some more & told him that he might want to let the doctor do her job... he honestly didn't realize that he was doing her job. After he thought about it, he started lauging and said that he should have waited to let her say that. That is just a small example of the way Todd works while we're here. It's pretty funny that he goes so far to make every decision in Kate's care! What they say is true, a parent knows his child best. In this case, Todd and I know Kate and her care best. Although, I tend to let the doctors and nurses do their jobs!

Love to all! Thank You for the continues prayers and support! It's looking like we will be out of here in time to participate at the Celebration of Champions! I'm really looking forward to it!

E-Coli & Gram Positive Rod

Kate has e-coli and gram positive rod (bacteria) in her line and blood. I was told that we all have different bacterias in our bodies & stomach, including e-coli. Because we have healthy immune systems, and a large white blood cell supply, our bodies can block these bacteria from entering out blood supply. Kate has no white blood cells as of yet, therefore, she has no defence system against these bacteria. They can leave her stomach and pass through her stomach lining very easily. We are waiting to see what these bacteria are sensitive to so we can decrease her antibiotics down to one. If she continues to get positive e-coli tests we will have to remover her line early. So far we have only had one positive test for the gram positive rod, and the e-coli. Let's hope it stays that way! No fevers since early Saturday morning! Yay! At least that antibiotics seem to be doing their job!

Thank you for all the prayers!

XOXO

Our last hurdle

The little one can't catch a break when it comes to fevers. After every chemo she gets a nasty fever. We've gone two nights with high fevers, reaching nearly 104 at times, chills, rapid breathing, high pulse, and low pulse-ox. It's scary. They're drawing blood cultures every 24 hours, and the first one is growing a bacteria. Gram (negative) rod is what it is called. Apparently this bacteria is in all of our stomach's. Since Katelyn has had c-diff and is neutrapeonic, it is a lot easier for this bacteria to cross the stomach barrier into the blood stream. The doctor said the fevers should start to subside soon. I hope so, it is scary watching her be so sick. Unfortunately she has to be hooked up again, and is getting antibiotics every 8 hours. I don't remember her ever being accessed with this many drugs. She's a trooper though. We are also keeping her in our room as we don't want to risk any new complications that could come from walks in the hall or visitors. Once we get through this bacteria and her counts come up, we will be done! That day can't come soon enough. We are really excited to be done! We aren't too anxious to leave the hospital yet... we want Kate to be 100% before we get excited to get back to "life".

Lots of prayers that Kate's fevers subside, please. Thank you for all the prayers for Zara! She came back Monday and tests showed only 2% blasts! Yay! Instead of going to transplant she can now continue chemo, like Katelyn did. We are all so happy, and her parents are ecstatic! Thank You again!

Chemo has come to an END!

Halleluia! Kate finished Chemo! Wednesday, April 15, 2009 was Katelyn's last dose of chemo! We are SO very grateful to be done! It doesn't quite feel real yet! Once Kate's immune system comes up, and we get to go home, it will probably feel more real. Nevertheless, we are ecstatic!

The doctors say that once her counts come up we'll do a bone marrow and a spinal tap, just to be sure that we're in the clear. Once those two things come back clear, we will take her hickman out! Yay! Once that is out, she will be able to take a bath, swim, and just get wet! We cannot wait. I think it will be very difficult for her though. She is very used to her hickman, and has adjusted to it being a part of her. I think she will be confused once it is out. Once she gets used to it, I know she will be ecstatic to be able to get wet and not have dressing changes or pins... It will be an amazing feeling to finally feel like she can be a normal kid again!

We are looking forward to so many things! Today we talked about Sea World and the Shamu Show. She wants to pet Shamu! She got really excited when I told her about all the fun stuff we can do at Sea World. We are all very excited!

We're going to have a little party here at the hospital to celebrate with the whole Hem/Onc team that helped our Angel beat cancer! I'll post the details for those of you interested. We will also have a big party for Kate's birthday in July... and that will be a good time had by all and everyone who would like to celebrate with us is invited!

Love & THANKS to everyone! We couldn't have made it through this without all the love and support that you, our friends and family, gave us in our most important time of need. Thank You all VERY much!

Love,
Todd, Krystal, Katelyn & Kiera

Prayers Please

We have great news! Kate had a CT last week to check for those two lung nodules that appeared when she was sick last month... They were gone! Yay! We are really excited! Thank you for all the prayers!!!

Kate started her last stint of chemo last night. We are so grateful to finally be coming to an end of chemo! Kate is such a strong little girl! We hope that she gets through this chemo without a hitch, and we pray that she never have to go through any of this again!

Please pray for our little friend Zara! She is 2.5 years old, also battling AML, and had her bone marrow test on Saturday. They found 5%-6% blasts in her bone marrow. If she had less than 5% blasts they could continue chemo and hopefully avoid a bone marrow transplant. They are going home for a week and will return for another bone marrow test next week. We pray that there is less than 5% blasts. If there is more, then they will have to have the bone marrow transplant. Please pray for Zara and her family!

Thank You!
Love,
Krystal