... into the future!
Still in a bit of shock that Mollie is going to be 7 this Sunday. Yes! Seven!
3.01.2011
2.22.2011
Clinic Update
Mollie had her first off-treatment echocardiogram (cardiac ultrasound). She was a little put-off by having to lay down in the hospital bed (reminiscent of the ER), but once the tech put Lady and the Tramp on the TV and turned down the lights, she was fine. The cardiologist did not find any problems and said everything looked great!
After that, we went upstairs for her regular clinic appointment with Dr. J. He said she is looking great, good color, etc. We talked a lot about nutrition: foods she should be eating (fresh fruits, veggies, whole grains, lean protein, calcium-rich foods) and foods she should avoid because of small links to cancer (anything processed, charred foods). No surprises there, but it was nice that a doctor actually brought the issue up!
The bad part of the appointment was the blood draw. Mollie wasn't prepared to have a stick in her arm (as opposed to the usual finger stick), but the order was for 2 tubes of blood and they can't get that much from a finger. It was pretty awful. She was very upset and tense; and then the nurse could not get any blood. They had to stick her other arm and even that was if-y. Mollie always wants to watch what is going on, but in this case it worked against her. Once we got her to close her eyes, she relaxed a little and the blood came flowing. After all the drama, I didn't get the complete results of her CBC! But I did call and find out her ANC was 2400.
In other news, we are all ready for winter to be over, but the hot summer temps can hold off indefinitely. Infinite spring. That would be perfect.
We have been busy taking advantage of the good weather in our local parks, including going to a "fairy house" festival. It was perfect outdoor fairy frolicking for Mollie and Lucy.
They dressed as fairies, went on a whimsical scavenger hunt, and built a little fairy house in the woods.
Hope you're having a good week!
2.10.2011
Growth
Apologies for the radio silence... I took a week off from updates and then we had problems with our internet connections.
Take away the chemo, steroids, nausea, fatigue, and missed school days... and you are left with a little girl who is shooting up like a string bean, toes busting out of her sneakers, and who reads at 3rd grade level!
Mollie has been making tremendous progress academically and physically since stopping chemo 5 months ago. Her reading tests indicate that she is reading way above grade level (which has me amazed and wondering how to keep encouraging her to progress). She is making friends, started a "fairy club" at school, and continues to love art, pretend play, and writing. She is working on a story to submit to a writing contest.
The last few weeks have been emotional for me for a number of reasons, but one is directly related to Mollie's leukemia. I read on a discussion board that COG made some changes to the treatment protocol that Mollie followed (she wasn't actually enrolled in the study because it was closed at the time she was diagnosed). Apparently, they found that in normal and low risk children, doing an additional IM (interim maintenance) was superior to following the standard treatment and they are switching all low and normal risk patients to that treatment. This is a great stride for pediatric leukemia patients! Unfortunately, Mollie didn't get this additional IM. I know it doesn't change the risk numbers we were given at the beginning of treatment, but it just leaves me feeling worried.
I haven't been able to find any documentation about these changes, but I will bring it up with Dr. J at Mollie's appointment next week. Part of me wants to just turn a blind eye to pediatric cancer research because when I read it, I worry. And I can't change the past. But, I also feel very inspired and hopeful by the progress that is being made. So I'll continue to pay attention to the studies and hope that one day, there will be a certain cure and maybe we will even be able to prevent leukemia.
Take away the chemo, steroids, nausea, fatigue, and missed school days... and you are left with a little girl who is shooting up like a string bean, toes busting out of her sneakers, and who reads at 3rd grade level!
Mollie has been making tremendous progress academically and physically since stopping chemo 5 months ago. Her reading tests indicate that she is reading way above grade level (which has me amazed and wondering how to keep encouraging her to progress). She is making friends, started a "fairy club" at school, and continues to love art, pretend play, and writing. She is working on a story to submit to a writing contest.
The last few weeks have been emotional for me for a number of reasons, but one is directly related to Mollie's leukemia. I read on a discussion board that COG made some changes to the treatment protocol that Mollie followed (she wasn't actually enrolled in the study because it was closed at the time she was diagnosed). Apparently, they found that in normal and low risk children, doing an additional IM (interim maintenance) was superior to following the standard treatment and they are switching all low and normal risk patients to that treatment. This is a great stride for pediatric leukemia patients! Unfortunately, Mollie didn't get this additional IM. I know it doesn't change the risk numbers we were given at the beginning of treatment, but it just leaves me feeling worried.
I haven't been able to find any documentation about these changes, but I will bring it up with Dr. J at Mollie's appointment next week. Part of me wants to just turn a blind eye to pediatric cancer research because when I read it, I worry. And I can't change the past. But, I also feel very inspired and hopeful by the progress that is being made. So I'll continue to pay attention to the studies and hope that one day, there will be a certain cure and maybe we will even be able to prevent leukemia.
1.22.2011
1.21.2011
Give Kids the World
We were so fortunate to stay at Give Kids the World Village on Mollie's wish trip. It was absolutely the best part about the trip!
If you haven't heard of GKTW, it is a resort only available to families through wish-granting organizations (like Make-a-Wish). All of the families staying there have at least one medically-fragile child. Because of this, GKTW caters to the needs of all children- even the merry-go-round and train accommodate wheelchairs easily. It was truly amazing.
A volunteer from GKTW met us at the airport, carried all of our luggage, and assisted us in picking up our rental car. We learned that for every employee at GKTW there are 30 volunteers! They are such kind people who are so eager to see the kids smile (and the parents too!).
All of the amenities at GKTW are completely free of charge- the food, rides, and activities. Lucy and Mollie (and even Liam) loved the carousel! It was open before breakfast until long past dinner. We started every day with a few carousel rides on our way to breakfast! They also had a train, arcade, theatre, garden and playhouse, ice cream parlor (open for breakfast!), miniature golf course, life-size Candyland playground, water park, and magic castle with a spa for kids!
There were activities in the village every morning and evening. There were some exchange students there for a few days; they taught the kids how to play with some traditional Japanese toys and wrote their names in Japanese. They spoke very little English, but they were so sweet and friendly! Every Thursday night, every week of the year, they have a big Christmas celebration at the Village. The kids loved the carriage ride, fake snow, cookie decorating, Christmas parade, and visit with Santa Claus.
As if all that weren't enough, the also decorated our villa for Christmas, with a tree and other decorations inside and lights outside. And the volunteers brought gifts for the kids EVERY DAY!
We could have stayed on the grounds of GKTW the whole week and still had a great time! More on the rest of our trip coming...
Mollie had clinic this week. In the words of Dr. J, "She looks great!" She has lost about 10 pounds since September, all steroid/water weight. Her counts are great-
WBC 4.2
ANC 1800
Hgb 13.3
Plt 219
She didn't have her echo this week; clinic was closed last week (due to snow) so they rescheduled her appointment. I thought they rescheduled the procedure, but they didn't. So we will wait until next month.
If you haven't heard of GKTW, it is a resort only available to families through wish-granting organizations (like Make-a-Wish). All of the families staying there have at least one medically-fragile child. Because of this, GKTW caters to the needs of all children- even the merry-go-round and train accommodate wheelchairs easily. It was truly amazing.
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| Our villa in storybook village |
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| Enjoying the garden |
A volunteer from GKTW met us at the airport, carried all of our luggage, and assisted us in picking up our rental car. We learned that for every employee at GKTW there are 30 volunteers! They are such kind people who are so eager to see the kids smile (and the parents too!).
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| Mayor Clayton gave the girls a personal tuck-in! |
All of the amenities at GKTW are completely free of charge- the food, rides, and activities. Lucy and Mollie (and even Liam) loved the carousel! It was open before breakfast until long past dinner. We started every day with a few carousel rides on our way to breakfast! They also had a train, arcade, theatre, garden and playhouse, ice cream parlor (open for breakfast!), miniature golf course, life-size Candyland playground, water park, and magic castle with a spa for kids!
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| Ice cream! |
There were activities in the village every morning and evening. There were some exchange students there for a few days; they taught the kids how to play with some traditional Japanese toys and wrote their names in Japanese. They spoke very little English, but they were so sweet and friendly! Every Thursday night, every week of the year, they have a big Christmas celebration at the Village. The kids loved the carriage ride, fake snow, cookie decorating, Christmas parade, and visit with Santa Claus.
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| Princess Mollie of Cornelius |
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| Carriage ride- thanks to the horses, Tom and Dan |
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| Visit with Santa Claus |
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| Prince Liam |
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| Mollie and Lucy walking up to the toadstool carousel |
We could have stayed on the grounds of GKTW the whole week and still had a great time! More on the rest of our trip coming...
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| Mayor Clayton's house |
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| Lucy rode the carousel at least 5 times every day! |
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| Even Liam enjoyed the merry-go-round |
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| Lucy got her nails done in blue at the spa |
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| Mollie and Lucy with Ms. Merry, the Mayor's wife |
WBC 4.2
ANC 1800
Hgb 13.3
Plt 219
She didn't have her echo this week; clinic was closed last week (due to snow) so they rescheduled her appointment. I thought they rescheduled the procedure, but they didn't. So we will wait until next month.
1.12.2011
Snow Days
We had a lovely little birthday party for Liam on Sunday! He cried at his first piece of cake because he wanted his bottle, but once he started on the cake, there was no stopping him!
Later that night, it began to snow. And it snowed all day Monday. Then it turned to freezing rain. Schools have been closed all week, so we have been having some fun around the house: sledding, crafting, fort-building, reading, and sitting by the fire. Tomorrow is back to school for Mollie. Unfortunately, they have to make up the missed days over President's day and the MLK holiday. Boo!
The clinics have been closed this week too, so Mollie's appointment will be rescheduled. Ever since Christmas she has been plagued with a cough/cold. We ended up taking her to urgent care (at our family doc) on Jan. 6 because she was looking and feeling puny (as they say in Augusta). She was feverish, coughing a lot, and extremely lethargic. They did a flu swab and chest x-ray and said told us they both came back negative, but that they would call when the radiologist reviewed the chest films. No antibiotics, just control the fever. The next evening we got a call from the doc that her x-rays showed a little "pneumonitis" or early pneumonia. So she started her favorite medicine, Zithromax. What a difference an antibiotic makes. She finished her last dose yesterday and feels much better!
I am still working on organizing our Disney pictures (too many!). Hopefully I'll have a couple of picture posts this weekend.
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| Liam is wearing the vest I knit for him! |
Later that night, it began to snow. And it snowed all day Monday. Then it turned to freezing rain. Schools have been closed all week, so we have been having some fun around the house: sledding, crafting, fort-building, reading, and sitting by the fire. Tomorrow is back to school for Mollie. Unfortunately, they have to make up the missed days over President's day and the MLK holiday. Boo!
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| Snow fun in the common area behind our house |
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| In case you can't tell, they are sledding on my (really old) snowboard! |
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| Not only do we not have a sled, but we don't have any snow clothes either! Lucy is wearing swim trunks over pants! |
The clinics have been closed this week too, so Mollie's appointment will be rescheduled. Ever since Christmas she has been plagued with a cough/cold. We ended up taking her to urgent care (at our family doc) on Jan. 6 because she was looking and feeling puny (as they say in Augusta). She was feverish, coughing a lot, and extremely lethargic. They did a flu swab and chest x-ray and said told us they both came back negative, but that they would call when the radiologist reviewed the chest films. No antibiotics, just control the fever. The next evening we got a call from the doc that her x-rays showed a little "pneumonitis" or early pneumonia. So she started her favorite medicine, Zithromax. What a difference an antibiotic makes. She finished her last dose yesterday and feels much better!
I am still working on organizing our Disney pictures (too many!). Hopefully I'll have a couple of picture posts this weekend.
1.09.2011
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