Well, the shot today went about the same. Mollie said it is the medicine that hurts, not the needle (confirming what everyone has told me). But, she got through it! We also saw the NP because this morning Mollie's legs started to hurt and she is having a little difficulty walking. She told the NP, "I can't walk very well; I can only waddle or limp. I just can't live like this anymore." This prompted a whole discussion about how Mollie is like an adult trapped in the body of a cute little girl! Honestly, I think it's just her vocabulary and cadence, but sometimes she really does sound mature.
Anyway, the walking issue is probably a temporary side effect of the ARA-C-. This drug can cause flu-like symptoms such as muscle and joint pain, and low-grade fevers.
Aside from the shot, she had a nice day. We went to the radiothon in the morning where she was interviewed by two radio stations, and NBC-Augusta news. She enjoyed being the center of attention, but wondered why there were no other kids there! And we're headed to the library for a holiday after-hours tonight.
12.05.2008
12.04.2008
Shot #3
First, a picture, as promised:
The ARA-C shot today was even harder than yesterday. Mollie took one look at nurse Kate and started running! I caught her half-way down the hall.
She cried during the shot and said, "Oh! My poor, poor leg!" But, she got over it pretty quickly. We can't figure out why the shot didn't hurt on Tuesday. Kate is going to try a slightly different technique tomorrow.
The rest of the day was fine. Mollie was in a good mood; we went grocery shopping after leaving the clinic and she didn't feel up to doing much when we got home. I can always tell when she's not feeling great because she wants to watch T.V. After dinner and bathtime, Mollie played by herself (well, she had her babydolls) in her room. She seemed to perk up quite a bit- just in time for lights out!
The ARA-C shot today was even harder than yesterday. Mollie took one look at nurse Kate and started running! I caught her half-way down the hall.
She cried during the shot and said, "Oh! My poor, poor leg!" But, she got over it pretty quickly. We can't figure out why the shot didn't hurt on Tuesday. Kate is going to try a slightly different technique tomorrow.
The rest of the day was fine. Mollie was in a good mood; we went grocery shopping after leaving the clinic and she didn't feel up to doing much when we got home. I can always tell when she's not feeling great because she wants to watch T.V. After dinner and bathtime, Mollie played by herself (well, she had her babydolls) in her room. She seemed to perk up quite a bit- just in time for lights out!
12.03.2008
Shot #2 of 8
Today's AraC shot was a little more difficult than yesterday. Mollie did NOT want me to give her the shot at home- she wanted Pam or Kate (the onc nurses) to do it. They agreed and since we live just 10 min. from the clinic, we decided it was fine to bring her in for her shots. She is the one going through all the treatment, so we try to give her as much choice in it as possible.
Well, we forgot to put Emla (lidocaine) cream on until we got to the clinic so it didn't have much time to get absorbed into her skin. And apparently the shot hurt, because she really screamed. Five minutes later, she was feeling ready to walk to Amy's office to get a Christmas Barbie. (Okay, I don't like despise Barbie, but Mollie was really excited).
At home, Mollie was in a great mood again! We stamped, painted pictures, read library books, and just played around.
Tomorrow, it's back for another shot (unless she'll let me give it to her at home). And grocery shopping. Lucy is eating us out of house and home!
Well, we forgot to put Emla (lidocaine) cream on until we got to the clinic so it didn't have much time to get absorbed into her skin. And apparently the shot hurt, because she really screamed. Five minutes later, she was feeling ready to walk to Amy's office to get a Christmas Barbie. (Okay, I
At home, Mollie was in a great mood again! We stamped, painted pictures, read library books, and just played around.
Tomorrow, it's back for another shot (unless she'll let me give it to her at home). And grocery shopping. Lucy is eating us out of house and home!
12.02.2008
Tough Kid
Mollie truly amazed me today.
We went to clinic prepared to get a spinal tap and more chemo if her ANC was above 750. Last week her ANC was 500, and Beth (the NP) was skeptical that it would be high enough this week. As it turned out, her ANC was 1330 today. They did a machine count and a manual count just to make sure.
So, she was NPO and had not eaten anything since 9 PM last night. She had an initial finger stick to measure her ANC. Then she got cyclophosphamide (Cytoxan) through her port. Then she got a subcutaneous shot of cytarabine (Ara C) in her leg. Then she was sent over to surgery for her spinal tap. After that it was back to clinic for hydration (and finally! some food). We arrived at the clinic at 9:30 AM and Mollie was hooked up to an IV from noon until 5 PM.
Still, she really had a great day. With all of those procedures, she didn't cry one time. Not even for the shot! Thank goodness for Ms. Kym, the child life specialist. She had Mollie making paper snowflakes, playing with stickers, and coloring an Ariel poster. Ms. Kym just "gets" kids and really can make Mollie laugh and enjoy her time in the clinic. Plus, the nurses, aides, and doctors at Children's are so good at what they do, that Mollie is very comfortable with the routines. She was so comfortable, she didn't even need versed to calm her nerves before her spinal tap!
So, long term maintenance (LTM) is within sight! The remainder of the current phase consists of 2 weeks of daily shots and oral chemotherapy. The doctors expect that Mollie's counts (RBCs, platelets, neutrophils) will drop drastically around Dec. 15 and might start to recover by Christmas. I wouldn't be surprised if we end up spending Christmas in the hospital because she spikes a fever or catches a bug.
Once her counts recover (ANC > 750 and platelest >75,000), she will start LTM. During LTM, Mollie will get chemo once per month, steroids 5 days/month, and a spinal tap once every 3 months for about 2 years. Most children go back to normal routines during LTM.
After we got home from the hospital tonight, Mollie continued to feel great! She was dancing around, singing, and playing with some of her new toys (she gets one every time she undergoes a procedure). And after dinner, she gave Lucy a pretend bath and they both were giggling!
A picture is coming... I promise!
We went to clinic prepared to get a spinal tap and more chemo if her ANC was above 750. Last week her ANC was 500, and Beth (the NP) was skeptical that it would be high enough this week. As it turned out, her ANC was 1330 today. They did a machine count and a manual count just to make sure.
So, she was NPO and had not eaten anything since 9 PM last night. She had an initial finger stick to measure her ANC. Then she got cyclophosphamide (Cytoxan) through her port. Then she got a subcutaneous shot of cytarabine (Ara C) in her leg. Then she was sent over to surgery for her spinal tap. After that it was back to clinic for hydration (and finally! some food). We arrived at the clinic at 9:30 AM and Mollie was hooked up to an IV from noon until 5 PM.
Still, she really had a great day. With all of those procedures, she didn't cry one time. Not even for the shot! Thank goodness for Ms. Kym, the child life specialist. She had Mollie making paper snowflakes, playing with stickers, and coloring an Ariel poster. Ms. Kym just "gets" kids and really can make Mollie laugh and enjoy her time in the clinic. Plus, the nurses, aides, and doctors at Children's are so good at what they do, that Mollie is very comfortable with the routines. She was so comfortable, she didn't even need versed to calm her nerves before her spinal tap!
So, long term maintenance (LTM) is within sight! The remainder of the current phase consists of 2 weeks of daily shots and oral chemotherapy. The doctors expect that Mollie's counts (RBCs, platelets, neutrophils) will drop drastically around Dec. 15 and might start to recover by Christmas. I wouldn't be surprised if we end up spending Christmas in the hospital because she spikes a fever or catches a bug.
Once her counts recover (ANC > 750 and platelest >75,000), she will start LTM. During LTM, Mollie will get chemo once per month, steroids 5 days/month, and a spinal tap once every 3 months for about 2 years. Most children go back to normal routines during LTM.
After we got home from the hospital tonight, Mollie continued to feel great! She was dancing around, singing, and playing with some of her new toys (she gets one every time she undergoes a procedure). And after dinner, she gave Lucy a pretend bath and they both were giggling!
A picture is coming... I promise!
11.30.2008
Feeling better
Mollie has been feeling much better these last few days, and she has really enjoyed her visit with my parents. She is her goofy, fashion-conscious self. Since most of her hair has fallen out again, she is also really into hats- thank goodness she has a lot of choices!
She is also eating a lot. She tried a little bit of everything on Thanksgiving, but decided the sweet potatoes and pumpkin pie were the best. Tonight she had macaroni and cheese with a side of.... cheese!! And she asked for even more cheese.
Dr. Bell said, "Cheese is good," so we're going with that.
Mollie is going to be on the radio this Friday (Dec. 5) from 10 -11 a.m. (Eastern time) as part of the 2008 Cares for Kids Radiothon. The proceeds from this fundraiser go towards patient care at Children's Medical Center. The money is used for everything from getting toys for the playrooms to helping in the purchase of new, advanced medical equipment.
Also, my sister's friend Dianne, is participating in the Leukemia and Lymphoma Society's Team in Training in honor of Mollie. The LLS has been a big help to us, so if you get the chance, please check out her website and pass the info on to others.
We hope you all had a lovely Thanksgiving weekend.
She is also eating a lot. She tried a little bit of everything on Thanksgiving, but decided the sweet potatoes and pumpkin pie were the best. Tonight she had macaroni and cheese with a side of.... cheese!! And she asked for even more cheese.
Dr. Bell said, "Cheese is good," so we're going with that.
Mollie is going to be on the radio this Friday (Dec. 5) from 10 -11 a.m. (Eastern time) as part of the 2008 Cares for Kids Radiothon. The proceeds from this fundraiser go towards patient care at Children's Medical Center. The money is used for everything from getting toys for the playrooms to helping in the purchase of new, advanced medical equipment.
Also, my sister's friend Dianne, is participating in the Leukemia and Lymphoma Society's Team in Training in honor of Mollie. The LLS has been a big help to us, so if you get the chance, please check out her website and pass the info on to others.
We hope you all had a lovely Thanksgiving weekend.
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