Monday, July 30, 2007

So good, so far.

So, Kate is doing great so far. She is still coughing but doesn't seem any worse for the wear. After church yesterday and a nap she felt up for a little hike. We went to Ousel Falls with Grandma, Jackson and Ava. We definitely took our time on the hike and the kids enjoyed exploring their surroundings. Grandma and I were happy not to be out of breath along the way. What a great way to spend a Sunday afternoon!

Trailhead

The Kids

Group Shot at the Falls

Thursday, July 26, 2007

Nervous Nellie

Kate has had a productive cough and runny nose for the last 2 weeks. I have put my hand on her forehead countless times and checked her temperature a bit too much as well. I can't help it. I don't know if it is because we are going out of town but I have a sinking feeling in my stomach and I am worried. Just before I went to New Hampshire and Kate was sick, I had a similar feeling in my gut that made me think I shouldn't go. I went anyway and we ended up at Dartmouth for 5 days and later a life flight back home. So...is this feeling a legitimate warning or is it because I am nervous to travel with her for fear that she'll worsen and that we'll be stuck in another hospital in the middle of nowhere? Yeah, I don't know either.
Jason and I were holding out to make a final decision of whether we should go, until after her appointment today. Kate had a big day, with IV chemo and lumbar puncture with intrathecal methotrexate. She did great and is napping now. They were a bit worried about her cough too, so they did a chest xray which looked kind of junky but no pneumonia. Her blood counts are good with an ANC of 1400 and normal hemoglobin and hematocrit. We are reassured by these numbers and a normal xray but I can't help worrying. I think we'll go anyway and pray for the best. The kids are so exicted to see their grandparents and cousins that they can hardly stand it. Wish us luck!

Wednesday, July 18, 2007

Team Hero


A lot of you probably don't know but since I ran my first half-marathon 4 years ago I have really wanted to run a marathon. Even before Kate's diagnosis I had decided that when I did a marathon I would run with Team In Training (TNT) and raise money for the Leukemia and Lymphoma Society. Last fall I sent away for information on the program and went to a meeting but then had second thoughts. I realized that training for a marathon while building a house wasn't realistic.
So, a month ago I decided to contact the society again and inquire about upcoming marathons. Two weeks ago I made a committment to run the Disney World Marathon on January 13th, 2008. While there were many other more exotic locations (Dublin, Hawaii, San Francisco, etc.) I thought that this would be a perfect destination for my children and a way for them to enjoying the experience. They are so excited for the race and hopefully my absence on Saturday mornings will be easier to take knowing that a trip to Disney World is at the end of it all.
For each marathon the team has a child dubbed their Team Hero. For people who haven't been touched by a person with a blood cancer this person serves as motivation, if you will. They will have met an actually person with the disease, who is fighting the cancer. TNT explained that when someone is running and hurts, is tired, or wants to quit the Team Hero is someone to think about and to give them strength to press on.
Well, this morning I got a call from the Leukemia and Lymphoma society in which they asked me if I would be willing to let Kate be our Team Hero. Tears sprang to my eyes while she was describing what Kate would mean to our team and how she will be such a big part of the event. Of course, I would have been thinking about her every mile of the race but it is going to be that much more meaningful, knowing that everyone of us is running for her and her fight against leukemia.
Click on this link if you are interested in learning more about TNT and their program.

Thursday, July 12, 2007

Week 2 Interim Maintenance

Kate's Dr. appointment was the shortest on record! It always seems like when we brace for long days we are blessed with the shortest visits. I should pick up on that pattern! So today we were in and out of the hospital in just over one hour! It was so great! Kate's ANC is 1290, WBC is 3.1, and her hemoglobin is within the normal ranges. I am kind of nervous with her ANC hovering around 1000 but they say not worry until it dips lower than 1000. Kate is looking great and feeling good right now. We are happy for this upswing!

Wednesday, July 11, 2007

Those crazy lab values

It seems that our lives have revolved around 4 numbers the last few months and it also seems to me, that I haven't fully explained what they all mean and why they are so important to us. When Kate's absolute neutrophil count (ANC) is too low she can't be around other people due to her inability to fight infections that she may come into contact with. When her hemoglobin is too low she has to receive blood transfusions and if her platelets were ever too low she would have to receive transfusions as well. Gratefully, Kate's platelets have never been very low.
So, here are "normal" values and what they mean to us.

While Blood Cells - Normal 5.0-10.0
They fight infection, if too low then she is at increased risk for infection.

Hemoglobin - Normal 12-16
Transports oxygen. If too low she's pale, tired, weak, has a fast heart rate and she gets headaches.

Platlets - Normal 150-450
Helps the blood clot. If low, she has bruising, petechiae and/or bleeding.

ANC - Normal is greater than 1000.
It is the infection fighting power. This is the bottom line number that causes me to hold my breath until I see it each week. Anything less than 1000 and her activities are restricted.

Now you may better understand the number mumbo, jumbo each week. :)

Saturday, July 7, 2007

Girlfriend

Kate has loved music since she was a baby. Jason and I would laugh when we'd look in the back seat to see our little one year old bobbing her head up and down to the beat. Every now and then Kate finds a song that she LOVES and wants me to play it non-stop. If the song isn't playing she'll walk around singing it herself (making her brother nuts). Kate's latest favorite is Girlfriend by Avril Lavigne.
The music link on the side will play the song if you click on the play button. Enjoy!

Monday, July 2, 2007

Deflating


One of my friends commented a couple of weeks ago that Kate looked like she was "deflating". She is definitely shrinking back down to her pre-steroid size but is not quite at baseline. She is also feeling more and more like her old self which is fantastic. Kate had a playdate yesterday with her friend Carter and is having another one today with Olivia so that tells you that her energy level is up! She is enjoying doing most of the things she did before diagnosis and is keeping me busy with filling up her social calendar. We are just thrilled to see her looking and feeling so good.