Tuesday, November 27, 2007

Flashes of Hope

Kate's portraits came back and they are great. These are a few of the shots that I like. He did a good job of catching several of her emotions that day. The photographs will forever remind me of her at the delayed intensification stage - bald from heavy chemo, bruised from low platelets, swollen cheeks from steroids, band-aid on finger from one of the hundreds of finger pokes for blood counts yet she is still smiling and is forever an angel!

I don't love the unflattering one of me in my workout clothes - kind of wish I'd know ahead of time about the portraits - but I do love it of US).

The photographer comes to the hospital once every 2 months and encouraged us to bring the other kids next time and get a family portrait done. I think we'll take him up on that!

Monday, November 26, 2007

Girly Stuff

I took Kate along for a trip to the salon and she was in second heaven. That cute little girl loves to get her nails done but what woman doesn't really? She deviated from her usual pink shade and chose "Electric Blue" this time. Whoa, was it ever electric!

She especially like the flowers and sparkles that they added for a special touch. Can't wait until the next spa day!


I wanted to let you all know that I reached my fundraising goal of $5,000. In fact, I am now at $5,200 and still going. It feels so good to be a part of such a wonderful organization and to feel like I can contribute in a small way. This of course couldn't have been done without your kind generosity and I can't thank you enough for supporting myself and Kate in this endeavor.

Monday, November 19, 2007

Today's Clinic Visit

Today we headed to the clinic to begin our second month of maintenance. It was a breeze really with only blood counts and IV Vincristine on the docket. Of some interest, (perhaps only to me) was that Kate's ANC went from 5,000 4 days ago down to about 1000 today. The doctors have been telling us that when the kids are sick their counts can really plummet in a matter of days. Being the skeptic that I am, I had to see it first hand to believe it. In fact, when they told us to go to the ER 4 days ago I said "but her counts were nearly 3,500 one week ago". They told us that it didn't matter because after only a couple of days they could easily drop to neutropenic level (below 500) and then she'd have to be admitted. I am going to try and roll with it in the future and not be so frustrated with this whole "checking the counts" ER process because although that trip is a painful process it is in her best interest to be safe.
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...

Another Fever - November 15th

I have FINALLY begun to listen to Kate and trust her instincts when it comes to her body. This morning I told her get dressed for school and when I went to check on her, I found her laying on the bathmat in her bathroom. She told me that she wasn't feeling well and that she had a headache. Uh-oh...fever, was my first thought but she only had a 99.3 temp and didn't seem too ill. Nevertheless, I did keep her home because I can be taught from previous experiences! We went to Jackson's school for the Thanksgiving lunch and over the course of the hour and 1/2 she began feeling worse.
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.

Blood Counts - November 8th

Highest counts ever! ANC of 3540. A few hiccups as of late are a rash and CONSTANT cold like symptoms. She has had a cough and runny nose for what seems like weeks but her lungs are clear and she is fever free with a great ANC so they aren't too worried. As far as the rash goes, Kate has developed a perioral rash which has worsened over the last 2 weeks. I learned today that it is pretty common with kids on treatment and they are treating it with a topical steroid and fungal cream.
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 came home from school and took a great nap so she was ready to hit the streets tonight. She nearly filled her bucket but I think would have been happy to stop sooner if Ava would have let her!

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.

TNT Halloween Party - October 30th

Kate and the winner of the TNT Halloween Party costume contest. Well, she was the 3rd choice but still...

Kate and the kids got to dress up in their Halloween best for the TNT Halloween Party. Kate was asked to be the judge of the costume contest and roped me into helping her with that assignment. When asked what her favorite costume was she promptly replied, "mine". Okaaaay, so they asked her if she could pick another person who would she choose. Well, being the great little sister that she is, she chose her brother. Again, okaaaay - if you could choose someone that isn't related to you who would you choose? The clear winner - Another Minnie Mouse! So here is Kate with Whitney, her 3rd choice for the costume contest.

Here is Ava as a spunky little fairy. She LOVED Clifford and had a great time dancing around too.

October 30th - The Blues

Poor little pumpkin is down in the dumps. I wonder if her expectations regarding going to back to school weren't quite met, or if we threw her in the deep end by going back full day or what but she is having an emotional go of it (and we aren't even on steroids).
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.

Back to School - October 26th

Kate headed back to school today since her counts were in a good place. (I think we would have waited until Monday if it wasn't class picture day though). She was so happy to be back with all of her friends and they are as darling as they can be with her.

In lieu of having the kids dress up in Halloween costumes the children were given the option to dress up as a character from a book and participate in a "Character Parade". Kate wanted to be Lola - from Charlie and Lola - and she convinced Jackson to dress up as Charlie (which was fine with him since he doubled as Charlie from Charlie and the Chocolate Factory).
I think that Kate feels pretty happy to be back to her "normal" routine.

October 25th - Recheck

Kate's counts were high enough today (a whoping 900) to begin the Maintenance phase of chemotherapy. Her hemoglobin was very good at 10.1 and platlets were high at 554.
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!