Delayed

We just got back from the clinic to find that Kate's counts weren't high enough to begin the Maintenance phase of treatment. Her ANC was only 330 but the monocytes were a lot higher at 26 indicating that her bone marrow is really starting to work. Translation, we are delayed beginning her phase until next Thursday (pending an ANC above 750).
I did learn that if we can begin Maintenance next week then July 4th, 2009 will be her last day of chemotherapy. That will give "Independence Day" a whole new meaning for us! It makes me tear up just to type that.

Monday Counts

We had our follow up appointment in the clinic on Monday and things are looking better. Kate's hemoglobin was 8.6 so we didn't need a blood transfusion. Her platlets started to go up and there was evidence that her bone marrow had started to kick in as well (ANC of 230). So we had a short clinic visit and will head back on Thursday. If her ANC is 750 or greater we will be able to start the Maintenance phase of treatment. If not, she'll have another week off until the counts more fully recover.

Fundraising Update

Woo-Hoo! Thanks to another few generous donations that I received today, my current fundraising total is $3,967 (which is 79% of my fundraising goal). To everyone who has donated - THANK YOU, THANK YOU, THANK YOU. There are many wonderful causes to support but I am touched that you all have reached out (or in, rather) and given so generously to The Leukemia and Lymphoma Society. I am encourage by this outpouring as is Kate. We Love You!

Camp Sunshine

Whirlwind of fun - is the phrase that I would use to describe our family weekend. Boy did we have a great time at Camp Sunshine though! When we filled out our survey at the end of the weekend and answered the question, "What was your favorite activity", these were the kids answers. (Basically everything!) This weekend we -

1. Paddled in some boats

2. Played tennis

3. Spent some time at the archery range

4. Played a round of mini golf

5. Painted coasters as a family

6. Went for a night hike

7. Did some arts and crafts

8. Played on the playground

9. Partcipated in an awesome drum show

10. Went fishing and Kate even caught a fish - (Don't ask Jackson what he caught though.)

For those of you that don't know, Camp Sunshine is a camp for children with cancer and their families. Their T-shirt design from the summer says it all. A child's quote on the back of the shirt says, "It's like heaven and everybody should go...but you have to be special and have cancer." The directors and volunteers are an amazing group of people, many of whom are cancer survivors and have their own inspiring stories to share.

The group not only puts on amazing camps year round but they also host weekly and monthly activities for the children and their families. The Sunshine House is fortuitously about 3 miles from our home so we are going to try and make it to an activity each month. Our lives are enriched by the lives of those families we have already met there.

Thanks TNT!

Our AWESOME TNT Disney Team came by last week with a wonderful surprise for Kate. Barb, Alley and Anne Ross showed up with a yummy ice cream cake and a bucket full of treats and hats for each one of the kids! Kate scored about 10 new hats and is having fun coordinating with each one of her outfits. Her favorite - the leopard Brittney-esque hat. My favorite - the pink Atlanta Braves cap.

They were so thoughtful to include all of the kids as well. Jackson has an awesome new ski hat and thinks that the cowboy hat was "totally radical".

Ava is in love with her "Boo" ghost socks and Kate's Minnie Mouse ball cap.

I am so lucky to be affiliated with this amazing group of people! They are a constant source of encouragement and support that I continue to draw from. I don't know how I'd be preparing for a marathon with them.

We're Home

Feeling better, so we get to go home. It is surprising how grateful we can be to be home again! Although the hospital is a good place to receive medical care, it is not a good place to get sleep. I was too tired in the hospital to keep you up to date with the details but can now recap our experience over the last 5 days. Here is a quick review of the blood counts so you understand what I am talking about.
ANC = Neutrophils=Germ fighting cells
Hemoglobin (hgb) = Red Blood Cells
Platlets = Body's clotting ability
Bone marrow - Where these cells are made
The chemotherapy that Kate has been getting over the last 2 months has completely wiped out her counts - thus the need for a blood tranfusion last Thursday and platlet transfusion on Monday. After those 2 transfusions Kate's hgb was 11.8 and platlets were 147 which are nearly in the normal ranges. Her ANC was 70 which is very low as anything under 500 is considered immunocompromised. So this is why we ended up in the hospital when Kate developed a fever. The protocol is to give IV antibiotics until they grow the blood cultures and determine whether the fever is from a bacterial infection or a virus.
When we first arrived, our attending doctor told us that we would have to wait until after 48 hours of negative blood cultures and signs that her blood counts were recovering before we could be discharged. On Tuesday her ANC went down to 60 and hgb and platlets dropped too. On Wednesday the counts looked better with an ANC of 110 but still dropping hgb and platlets. We were hopeful that yesterday her counts would improve but they all dropped again and her ANC was 60, hgb 8.8 and platlets of 68. The fact that these counts were not increasing meant that her bone marrow hadn't recovered yet and wasn't producing the cells as needed. So, based on our conversation with the inpatient physician we were prepared to have to stay for at least another day or two.
We were so happy when the inpatient physician came in and told us that he had discussed the case with our regular oncologist, Dr. Keller, who thought that it would be ok if we went home despite the poor counts. Kate's fever was gone, she was looking great and we were just waiting to see improved numbers. His thought was that it could be a week or more before her counts improved and that we could do that at home. The one downside is that if she gets a fever we will be back in the hospital for another admission. Chant with me - no fever, high counts, no fever, high counts...
We will be going back to the clinic on Monday for repeat counts and to see if we will need any transfusions by then. For now, Kate is doing great. She is smiley, her spirits are up as usual and she has a lot more energy than you would expect for a girl with a hemoglobin of 8.8.
We are headed to Camp Sunshine Family Weekend today and tomorrow and are really looking forward to it. This is a camp for children with cancer and for their families. There is a physician on site and it is an hour outside of Atlanta so we should be safe should Kate develop any fever or other complication. We'll post some pictures when we get back!

First Admission

Bummer. Not 2 hours after the last post Kate developed a fever! I swear that I jinxed us. After her platlet transfusion we left the hospital and she was really tired so she took a nap. After 3 hours she woke up and told me that her head hurt and felt "smooshy". I put my hand on her forhead and she was hot. Took the temperature and it was 101 degrees. Big time bummer. We knew that with her counts so low she was going to have to be admitted.
She is doing fine now but will have to stay in the hospital for a few days, until her blood cultures are negative and her blood counts start trending up. As always, please keep her in your prayers. I will post more tomorrow when I am less sleepy.

Platlets too!

Not too surprised that Kate did end up needing platlets today. Her platlet count went down from 23 on Thursday to 14 today. She also had a little bleeding last night so they went ahead and transfused her. The platlets have a thick yellow appearance (like congealed movie popcorn butter - yummy) so we teased Kate that she tastes buttery and that we want to eat her up now.

Her ANC was also very low today at 60 but that is better than 0, which is what it was 4 days ago! This was to be roughest phase of treatment but she handled it remarkably well. We were so blessed that Kate never had a fever or required a hospitalization in this phase either. That is a pretty rare phenomenon apparently. Her reward -- another week off of chemo to recover those counts. Yea!!!

We also had a fun surprise at the clinic today. A professional group comes once a month and does professional portraits of the kids for free. The organization is aptly titled, "Flashes of Hope". A make-up artist put some sparkly powder of Kate's face, some shiny lip gloss on those lips and Kate flashed her pearly whites for the camera. The proofs will come back in 5 weeks and I can't wait to see them. Don't worry, you know I'll blog a picture or two once they arrive.

Next Thursday Kate will have a lumbar puncture, IV chemo and will begin the Maintance phase of chemotherapy. This is the last and longest phase of the treatment. It promises to be the easiest too. I can't believe that we are nearly 6 months into the treatment already. The sure hope that the next 21 months will fly by too!

I Did it for Kate!

Mitchell, a young man that attends our church, decided after he saw Jackson's shaved head that the other youth in our church should show their support for Kate by shaving their heads. I don't think that he had tons on support in this matter, but he was persistent in wanting to do it anyway. So, the other night he came to our house and had Kate help shave his head. It was such a sweet gesture of support from a thoughtful teenager. (and you thought that teenager and thoughtful were oxymorons! )

Mitchell made this T-shirt for the event and planned to wear it to school the next day for the unveiling of his do.




This story is one of many that I will try to remember and post for you all to hear. There are dozens of similar ones from our community as they continue to reach out to Kate and our entire family. We are so very blessed!

Fall Festival Scare

Today was Jackson and Kate's elementary school's Fall Festival. It is definitley one of the highlights of the year for all of my kids! Probably because we start preparing for the event in the summer time and they hear me talking about and planning for it for months. Kate has been at home with me as well, so she's gotten an extra dose of running errands, doing tasks like bagging prizes, and meetings with sub-committee chairs.

Unfortunately, Kate didn't get to really enjoy the festival this year though. After just an hour, Kate began complaining to Jason and Gramma H. about her stomach hurting and then asked if they could take her home. When they found me and told me that, I noticed that she had petechiae all her face, neck and torso. (Petechia are small red/purple spots that are tiny vessel hemorrhages. These show up when platlets are very low.) After a while Kate was doubled over and started to worry us. I was having visions of driving her to the ER for evaluation and then I began worrying about what could be causing this pain. Jason, Gramma, Kate and Ava left the festival and I got on the phone with the on-call Heme/Onc doctor to look for some guidance as to what we should do. Because she didn't have a fever, a rigid abdomen, vomiting or bleeding from another site, they recommended giving her some narcotic pain medicine and checking back with them. Gratefully, she took a 3+ hour nap and woke up feeling much better.

This picture is the only picture I took that included Kate before she started hurting. They were all participating in a cake walk in and Jackson won the cake! I felt so bad for Kate that she wasn't able to really enjoy the Fall Festival that she had so been looking forward to. Gramma later told me that Kate was really missing me as well too, so she and I hung out last night and caught up after a busy 2 days. She is doing fine now and hopefully will be on an upward swing. When we later talked to Dr. Keller he suspected that her abdominal pain and general crappy feeling was basically because she was in the roughest part of her chemotherapy treatment.

The Chick-fil-A marketing manager had a special surprise for Kate. She gave her a HUGE cow and Chick-Fil-A meals for a year! Kate has been carrying (or dragging) the cow around with her constantly since yesterday. In fact, she is currently napping with him.

I really wanted a cute shot of our 3 little pumpkins but Ava wasn't having it and Kate didn't like the scratchy straw. So, this is our one and only shot. We hope that next year's Fall Festival finds Kate a much happier, healthier little girl!

Got Blood?

We were not surprised at all to find that Kate needed a blood transfusion on Thursday. Her hemoglobin went down from about 11 to 7 in a week! She looked very pale to us, her heart rate was up and her energy level was going down. Her platlets were also very low at 23 (normal is 150-450). They are going to bring Kate back on Monday for blood counts and if they are lower she will get a platlet transfusion as well. Wednesday was the last day of her 2 very rough weeks of chemo and she has the week off from all chemo so Dr. Keller thinks that the counts will start recovering now. This picture is of Kate just as the treatment was beginning. Due to the hospital lighting I couldn't seem to capture her pre and post coloring but it was markedly different.

Kate spent the 6 plus hours in the clinic watching some shows, doing her school work and as you saw from the first picture taking some rides on her IV pole!

She also spent some time sleeping. Note the glazed look in those eyes.

When Kate was all done getting the blood she looked better immediately. This is her after the bag had transfused. She had color in her cheeks and seemed more like her perky self. We'll see about needing platlet transfusions of Monday.