Mollie turned 6 today!
Here are a few words that describe her:
Magical
Original
Loving
Loyal
Imaginative
Elegant
She had a lovely fairy party with her friend Hannah; we really missed Bella who is sick. They did fairy crafts, hunted for fairy treasure, and then had a tea party. We followed it up with a beautiful & delicious flower fairy cake (thanks Momo!). Soon, we're headed out to celebrate some more with Liv & Sam!
4-year old Mollie was diagnosed with pre-B cell acute lymphoblastic leukemia on June 17, 2008. This is her story.
3.06.2010
3.04.2010
Almost There...
Mollie is doing pretty well with the steroids (and I am too!). Food is the big issue this week-- she's not eating anything except bagels and cream cheese! She is also very tired, but I guess she got most of her aggression out after her spinal because she has been in a great mood. She has been creating gifts for all of her friends and her mouth is going a mile a minute making up poems and telling me all about fairies.
We also got this update from Frank, who is shaving his head for St. Baldricks (click here for his page):
"This could be our BEST year ever ... At the end of the day people step up and prove just how beautiful they are."
He has already raised $5,515, surpassing his goal by over $500! Go Frank!
Best part of the week so far.... Mollie gave me a prize for winning the cookie contest(?) and making the best cookies in the world (they were cherry chocolate chip)! Should I advertise them as my "award-winning" cookies?
We also got this update from Frank, who is shaving his head for St. Baldricks (click here for his page):
"This could be our BEST year ever ... At the end of the day people step up and prove just how beautiful they are."
He has already raised $5,515, surpassing his goal by over $500! Go Frank!
Best part of the week so far.... Mollie gave me a prize for winning the cookie contest(?) and making the best cookies in the world (they were cherry chocolate chip)! Should I advertise them as my "award-winning" cookies?
3.02.2010
Altitude is Everything
Back in college I had a swim team T-shirt that said, "Attitude is everything" on the back. It was written in a funky script that made it look like "altitude" and Matt used to tease me about it every time I wore that shirt. Attitude is really so important and thank you everybody for reminding me of that and providing some encouragement.
Today, day 2 of steroids, was not too shabby. Mollie went to school for the entire day; she seemed pleasant and happy when she got home - she spent most of the evening writing letters to everyone in our family. But she had large dark circles under her eyes and went to bed 45 minutes earlier than usual. Guess I'll just wait until morning to determine whether she goes to school tomorrow. If she does, I will pick her up early because I don't want her to get too worn out.
Today, day 2 of steroids, was not too shabby. Mollie went to school for the entire day; she seemed pleasant and happy when she got home - she spent most of the evening writing letters to everyone in our family. But she had large dark circles under her eyes and went to bed 45 minutes earlier than usual. Guess I'll just wait until morning to determine whether she goes to school tomorrow. If she does, I will pick her up early because I don't want her to get too worn out.
3.01.2010
Clinic Update
Mollie's clinic visit and IV chemo went very well today, but her re-entry after the spinal tap/IT methotrexate was a little rough.
We got a late start which is never good when your child hasn't eaten since dinner the night before. Then, we forgot to put the EMLA cream (that numbs the skin before the needle goes in) on her skin over her port before we left the house this morning. Luckily I had a tube of it in my purse and we remembered on the way to the clinic; otherwise, we would have to put it on in the clinic and wait an additional 30 minutes for it to take effect. I am definitely a cancer mom!
Everything went very well in the outpatient clinic- they whisked us off to an exam room (the one with the chalkboard) so Mollie wouldn't have to watch/smell people eat burgers and fries all day. The port access went very smoothly. Ms. Nikki gave Mollie and Lucy TONS of stickers to play with and the new social worker came by with craft stuff and toys.
By noon, Lucy was getting hungry so Matt came and took her home for lunch and her nap. Mollie did a craft with Ms. Kat and then Mollie got her IV chemo. Her counts are fine (ANC is a bit borderline at 976), so she is going back on 100% chemo (at an increased dose because of her height). Then we headed to the OR at the hospital.
Mollie did fine with the sedation, but she woke up very quickly after the procedure. She usually sleeps for about 30 minutes before waking up, but today she woke up as soon as I arrived in the recovery area. And she was ANGRY when she awoke. She just keptsaying yelling that she wanted to go home and asking when we could go home. She really was in a rage. And then, the nurse helped me wheel her down to the lobby in a wheelchair (I had Liam in the stroller) and I had to leave her there, screaming, while I went to pull the car around. This is the first bad "wake-up" she's had so far. I am hoping the next two are better. I attribute this to her being very, very hungry (it was about 2:30 PM and she had not eaten since 7 PM last night) or getting less Versed (the sedative she gets before she goes into the procedure). We had an anesthesiology resident do the dosing and half of her usual dose sedated her just fine so he didn't give her the additional medication. I'm fine with that since the last thing I want to do is overmedicate, but if it makes it easier for her to come off the anesthesia, then I will ask for the higher dose next time.
Anyway, she was fine a few minutes after she got in the car and got a snack. We hit Stevi B's for pizza afterwards. The present she chose from the "present box" was a bag of geodes (thanks Genevieve) that she got to break open with a hammer when we got home. They were full of crystals inside!
My nerves are a little frazzled from listening to all the yelling in the recovery room. It was so unusual for her that the anesthesiologist gave me his cell phone number and told me to call if she didn't calm down within an hour or so. Luckily she did and all is well, but now the steroids start. I'm anticipating a somewhat stressful week... but at least we have Mollie's birthday to look forward to on Saturday!
We got a late start which is never good when your child hasn't eaten since dinner the night before. Then, we forgot to put the EMLA cream (that numbs the skin before the needle goes in) on her skin over her port before we left the house this morning. Luckily I had a tube of it in my purse and we remembered on the way to the clinic; otherwise, we would have to put it on in the clinic and wait an additional 30 minutes for it to take effect. I am definitely a cancer mom!
Everything went very well in the outpatient clinic- they whisked us off to an exam room (the one with the chalkboard) so Mollie wouldn't have to watch/smell people eat burgers and fries all day. The port access went very smoothly. Ms. Nikki gave Mollie and Lucy TONS of stickers to play with and the new social worker came by with craft stuff and toys.
By noon, Lucy was getting hungry so Matt came and took her home for lunch and her nap. Mollie did a craft with Ms. Kat and then Mollie got her IV chemo. Her counts are fine (ANC is a bit borderline at 976), so she is going back on 100% chemo (at an increased dose because of her height). Then we headed to the OR at the hospital.
Mollie did fine with the sedation, but she woke up very quickly after the procedure. She usually sleeps for about 30 minutes before waking up, but today she woke up as soon as I arrived in the recovery area. And she was ANGRY when she awoke. She just kept
Anyway, she was fine a few minutes after she got in the car and got a snack. We hit Stevi B's for pizza afterwards. The present she chose from the "present box" was a bag of geodes (thanks Genevieve) that she got to break open with a hammer when we got home. They were full of crystals inside!
My nerves are a little frazzled from listening to all the yelling in the recovery room. It was so unusual for her that the anesthesiologist gave me his cell phone number and told me to call if she didn't calm down within an hour or so. Luckily she did and all is well, but now the steroids start. I'm anticipating a somewhat stressful week... but at least we have Mollie's birthday to look forward to on Saturday!
2.28.2010
Ups and Downs
Mollie is definitely on an 'up' right now. The Dance Marathon event on Saturday was a hit with our kids. They had lots of treats to eat and a giant box of Legos. Mollie was too shy to interact with the team of college students dancing just f0r her, but all in all I think she had fun.
Another 'up'- we've been enjoying the Olympics. Mollie likes figure skating the best and now wants to try ice skating. Hmmm, we'll have to find a place to give it a try.
The 'downs' from the title mostly refer to me (Sarah). I am not a whiner, but I think I need to just take a minute to get this out. I am having a hard time dealing with everything on my plate right now. For those who don't know, we are relocating to Charlotte, NC in a few months (for Matt's job). So on top of taking care of 3 kids, one with cancer patient and one infant, I am trying to plan a move. To purge, organize, think about selling our house in this economy, and figure out how I'm going to do it all. And I'm exhausted and overwhelmed. I find myself letting my thoughts drift too far into the future and getting worried about, well, just about everything- Mollie's long term health, money, things that I can't control. I so wish we lived closer to our families who I know would help us out.
Okay, vent over. Tomorrow, Mollie has her spinal tap (which means she must fast after dinner tonight). She's down to 3 left! I can hardly believe that the end of treatment is in sight. It is very emotional; we are so excited for her to be done with the toxic chemo, but it is not over. It will never be over. There are 5 years of follow up, including monthly clinic visits for blood tests the first year, but I don't think I'll ever be able to stop worrying about relapse, side effects, or secondary cancers.
When I told Mollie that she had a spinal tomorrow, she said, "Yay! I get the sleepy medicine and get to pick out a toy!" See, I ended this post on a high note!
Another 'up'- we've been enjoying the Olympics. Mollie likes figure skating the best and now wants to try ice skating. Hmmm, we'll have to find a place to give it a try.
The 'downs' from the title mostly refer to me (Sarah). I am not a whiner, but I think I need to just take a minute to get this out. I am having a hard time dealing with everything on my plate right now. For those who don't know, we are relocating to Charlotte, NC in a few months (for Matt's job). So on top of taking care of 3 kids, one with cancer patient and one infant, I am trying to plan a move. To purge, organize, think about selling our house in this economy, and figure out how I'm going to do it all. And I'm exhausted and overwhelmed. I find myself letting my thoughts drift too far into the future and getting worried about, well, just about everything- Mollie's long term health, money, things that I can't control. I so wish we lived closer to our families who I know would help us out.
Okay, vent over. Tomorrow, Mollie has her spinal tap (which means she must fast after dinner tonight). She's down to 3 left! I can hardly believe that the end of treatment is in sight. It is very emotional; we are so excited for her to be done with the toxic chemo, but it is not over. It will never be over. There are 5 years of follow up, including monthly clinic visits for blood tests the first year, but I don't think I'll ever be able to stop worrying about relapse, side effects, or secondary cancers.
When I told Mollie that she had a spinal tomorrow, she said, "Yay! I get the sleepy medicine and get to pick out a toy!" See, I ended this post on a high note!
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