Friday, December 21, 2007
Right now Kate has a cold and productive cough but she certainly doesn't seem sick - unless sick looks like a girl jumping on a trampoline for an hour a day! She continues to be happy and is very excited for Christmas.
Wednesday, December 19, 2007
Wednesday, December 12, 2007
Sunday, December 9, 2007
Her appetite has markedly decreased over the last 2 days and she has continued to complain about her stomach hurting at various intervals. She mostly seems well though so we haven't paid it to much attention.
Then last night she came into our room saying that she was going to throw-up. Thank heavens that little girl knows to go downstairs to get a bowl because she sure needed it. We kept her in our bed with us and through out the night she was sick 3 different times.
A boy in Kate's class went home on Thursday and was later diagnosed with strep throat. She is also complaining of a sore throat but doesn't have a fever so we are going to hold off until the morning and then probably head into the clinic just in case.
Thursday, December 6, 2007
I am drilling it into her head that she needs to wash her hands and keep them away from her face. We don't want to end up with a fever and hospitalization at this time of year for sure!
Saturday, December 1, 2007
Tuesday, November 27, 2007
Monday, November 26, 2007
Monday, November 19, 2007
Today Kate is tons better with only a slight junky cough and runny nose. Her body has obviously been silently fighting that virus though with such a drastic change in numbers. Hopefully we are headed for a more germ free holiday season. Can you say hand sanitizer?
PS-Although Kate recovered quickly, keeping her in my bed was not such a good idea for MY health. I had a painful 3 days of nasty cold and headache thanks to little miss petri dish. Alas, the things we do for our kids...
We left and when I rechecked her temperature at home it was 102 degrees. Bummer. Well Double Bummer really because Jason left for 5 days yesterday so we were on our own today. Thanks to Angela and Beth, some quick responding friends, Jackson and Ava were taken care of so I could take Kate to the ER for the obligatory 5 hour visit including a chest x-ray, blood counts and IV antibiotics. We were eventually granted a pass home after Kate's ANC resulted an amazing 5,000. We were all stunned but it is very good because it means that her body was trying to fight the infection.
Boy was I grateful to be going home to my children and not sentenced to 48 hours of IV antibiotics. She is sleeping in my bed tonight so that I can keep an eye on her but isn't looking too bad - especially after Tylenol.
Because Thanksgiving falls on our next clinic day, Dr. Keller will bring us back in 11 days for IV chemo and counts. We're cruising along until then.
PostNote -The rash improved after just a couple of days but keeps trying to flare back up. Since we can't continue steroids on the face for any extended period of time we are using Aquaphor which is magical!
Kate and Ava got to ride around in style on the double jogging stroller and still Kate said that she was tired after like 10 houses. Is it only me, or does anybody else remember lugging around pillowcases and RUNNING from house to house for more loot until their parents forced them to come home?
Here are our 3 cute trick or treaters. It was difficult to pin our Ninja down for a picture but we managed to grab shot of a stoic faced Jackson.
Here is Ava as a spunky little fairy. She LOVED Clifford and had a great time dancing around too.
Her first day back, on Friday, went great. Monday she wasn't too thrilled to go school though and today she asked if she could stay home. She said that school is too long and that she coudn't do it. We reassured her (or tried) and sent her off. A few hours later the school nurse called to say that Kate had been in her office for an hour and wasn't feeling well. I really think that she feeling ill emotionally, not physically though.
When we got home she took a nap and perked right up. I asked her why she was so "tired", as she kept saying. In Kate's words - "I'm tired of everyone asking me when my hair is going to grow back and stuff like that." I reply- "I see. How does that make you feel when they ask you questions like that"? Kate- "It makes me feel like I'm not normal...like I'm still sick." My jaw dropped. How can a 5 year old articulate herself so well? She is growing up too quickly.
I came to see that in Kate's eyes, going back to school meant that she wasn't sick anymore and that she was over all this leukemia business. She has also been out of school for 2 months and is now like the new kid back at school. She isn't sure of the routines, expectations of her or even who her friends are. I felt like crying with her but didn't. We'll figure this out.
Today she received IV Vincristine, followed by a lumbar puncture with intrathecal Methotrexate. She continues to do better each time with the lumbar puncture. Today she barely made a peep and then snoozed for the last half hour while lying flat.
We will continue on this phase for the next 21 months and are ready for it. This is the medical regimen that we can expect from here on out.
1. IV chemotherapy once a month - Vincristine
2. Oral chemotherapy daily - 6-Mercaptopurine
3. Oral methotrexate once a week
4. Antibiotic 3 days each wee - Bactrim
5. Steroid pulse 5 days each month - Dexamethasone
6. Lumbar puncture only once every 3 months now with intrathecal Methotrexate
We are feeling like we are in a groove now and life is good!
Thursday, October 18, 2007
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.
Wednesday, October 17, 2007
Tuesday, October 16, 2007
Sunday, October 14, 2007
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.
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.
Friday, October 12, 2007
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!
Wednesday, October 10, 2007
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.
Monday, October 8, 2007
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!
Sunday, October 7, 2007
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!
Saturday, October 6, 2007
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!
Thursday, October 4, 2007
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.
Sunday, September 30, 2007
Just a picture of our 2 squinty eyed cuties!
Wednesday, September 26, 2007
Friday, September 21, 2007
Kate received Vincristine and Cytarabine through her port, followed by a longer infusion of Cytoxan. This drug can be toxic to the kidneys and bladder so after the infusion she had to receive several more hours of IV fluid. That poor girl must have gone to the bathroom a dozen times!
Tuesday, September 18, 2007
Over the course of 5 days Kate began to seriously shed her beautiful locks. She would wake up with her pillow and shirt covered and then throughout the day she would pull handfuls out at a time. Yesterday her hair was rivaling the worst-comb over you've ever seen! I think that she was sick of clumps falling in her food too, because she asked us if we could cut the rest off. With a bit of sadness on my part, we obliged and headed off to her hairdresser. As you can tell from the picture below, she wasn't at all traumatized by the experience though.
Kate smiled from the minute we arrived at the salon and hasn't stopped yet. I am thrilled that she looks at this phase as a fun adventure and isn't upset by the change in her appearance.
Grandma Anderson and I both had to try and hide the tears in our eyes during the process because we didn't want to let on that it affected us more than Kate! Although I've known that this was coming, it was something different when I actually had to face it.
Monday, September 17, 2007
Wednesday, September 12, 2007
My total raised to date is $1,433. My goal is a whopping $5,000 though, so if you haven't donated yet, please consider it. Just follow the TNT link on the margin, it is really SO EASY.
Thank you so much to everyone who did make online donations to the Leukemia and Lymphoma Society last week. I feel like in addition to helping Kate with her journey through cancer treatment, I am helping another person who will one day be diagnosed.