Zofran rocks!

Mollie's weekly, at home drug/chemo regimen goes like this:

6-MP- every single day (for the next 2 years!)
Methotrexate (MTX) - Tuesdays (unless she has spinal chemo)
Septra- Fri, Sat, Sun
Oral/Mouthcare- everyday (we have to get better about doing this!)
Dexamethasone- 5 days every 4 weeks

That is a lot of drugs. The steroids are difficult- no way around that. The only other drug that has caused any side effects is the methotrexate; it makes Mollie feel nauseated.

That's where the Zofran comes in to play. Mollie was upset this morning because she felt like throwing up, but she really was hungry and wanted to go to school. One Zofran and 20 minutes later, she was dressed and ready to go! We got to school a little late, but she jumped right in to the funky scarf-dancing session with her friends!

Playhouse

The weekend was okay; Saturday was the last steroid day for a while. We worked (moving furniture) around the house, but we did make it to Teresia's for a German lesson (and some delicious treats) on Sunday.

Mollie spent some time looking at playhouse ideas... I found one that she really likes (on this blog). What do you think? I love it! We're hoping that Make-a-Wish can build something along these lines. We will keep you updated on the progress.

Mollie had a great day at school today and asked me why she can't stay for afterschool care. She is looking forward to Valentine's day (her favorite holiday, I think). We will work on her special Valentine mail box tomorrow after school.

Not too bad

Surprisingly, this week on steroids has not been as bad as I thought. Since clinic on Tuesday, Mollie stayed home from school Wednesday, went to school Thursday, and stayed home Friday. I think she could (or maybe should?) have gone to school Weds and maybe yesterday. The effects of the steroids are cumulative, so today she was definitely feeling them more.

Weds morning, she woke up and wanted to go to school. So, I sent her up to her room to get dressed and when she finally came down she was teary and emotional. "I was just trying to be a big girl. I'm really sorry." Hmmm... turns out she tried to paint her own fingernails while she was up there (at 7:30 AM) and spilled some nail polish on the rug. It wasn't too bad, and I certainly wasn't angry, but she still didn't feel like going to school. Instead, we ran errands, went to lunch, and went Build-a-bear to make a special bear for my cousin Katie's baby-to-be. Mollie had a great time and then took a 4 hour nap when we got home.

Today we went to the library and then ate lunch. The cafe in the library, where we ate, is a family business. The owner put in a special gumball machine in honor of Mollie- most of the proceeds go to cancer research. Mollie and I were surprised and touched. Afterwards, we went to a children's resale shop to get small treats for Lucy and Mollie. We scored big! Some brand new bear slippers (Mollie's been wanting new, bigger slippers for a while) for $2.99, a Valentine's nightgown with hearts on it, a free Little Red Riding Hood storybook with a CD, and a toy purse (for Lucy).

Last night, both girls went to bed at 7:30. Today is Mollie's last day of steroids until next month. The dark circles under her eyes will go away and she'll have more energy. We are all looking forward to that!!

And so it begins...

The steroids have hit hard and Mollie is home from school today. She has already had breakfast, two snack refills and she's been asking to go the grocery store and then to Panera. I'm glad she prefers Panera to McDonalds, but it is not kind to the pocketbook!

Clinic Update

Mollie had to go to clinic today for chemo. All went smoothly (hurray!) and her ANC was a perfect 1400. During maintenance, they try to keep the ANC between 1000 and 1500; this assures that the chemo dose is high enough to cause bone marrow suppression, but not so high that it causes neutropenia (and greater infection risk).

Mollie also got a cardiac echo today, to check her heart function (remember, the doxorubicin can be damaging to the heart in some patients). Her SF was 35.3%- anything about 30% is normal, so she won't need another scan until next year.

We had to wait a long time for the chemo (vincristine), but it finally came and she got it through her port, no problem. Then it was off to have pizza will Courson and Zachary. Mollie had a great time at lunch, but she ate pasta since she doesn't like pizza She really enjoyed playing in the arcade and getting prizes with all her tickets. She said she had a lot of fun-- pretty impressive for a chemo/clinic day!

She is starting a 5-day steroid pulse so she will probably stay home from school some this week. Maybe we'll do Valentine crafts.

Share and Care

We went on the Share and Care retreat this weekend. It was organized by Mollie's hem/onc clinic. The idea was for some of the hem/onc families and staff to get to know each other better, to let the kids be kids, and to give the parents a chance to have some kid-free time. It was great!

Kym, the fabulous Child Life director, had all sorts of wonderful things organized. There was a magic show, campfire, arts and crafts, mini-golf, a dance, complete with djs, disco balls, and stage fog, and a movie. The retreat was at the same place where the summer camp is held, so we got to sleep in the cabins, eat in the dining hall, etc. Mollie is really excited to go to camp this summer!

The parents had several discussion sessions focused on dealing with pediatric cancer. Then the guys went and did a ropes course and the women got massages, facials, and manicures. All without kids. Very nice.

Mollie had a great time. She made friends with Molly's sister who's about the same age. Mollie was much more outgoing than I've ever seen her. She volunteered to go up on 'stage' during Magic Mike's show. She held a real, live dove and helped him with some tricks. Then she was giggling and LOVING the rest of his show. And the dance. Mollie was all decked out in a crown, fancy dress, and butterfly wings. Every other person was wearing jeans and their camp shirt, but not Mollie. She was dressed to impress! Mollie idolizes the child life specialists and interns, and was so happy when they ooohed and aaaahed over her outfit.

Lucy had a nice time too. Everyone wanted to hold her and she got a LOT of attention. The best part was getting to know some of the other families better. We see these people every week or two in clinic, but we don't always see the siblings and spouses, and we don't know much about their lives outside of clinic.

Somehow, I don't have very many pictures.... but trust me, it was fun.

Wishes and Heroes

Mollie's drawing of herself, in earmuffs, on a sunny day with Lucy, five smiling hearts, a cloud, and a big face.

Yesterday, was a good day.

Mollie's "wish coordinators" from Make-a-wish dropped by to say that Mollie will be getting her playhouse! She'll even get to invite all her friends to a house-warming party after it is installed. That will probably happen sometime in May. Now she is thinking about what she wants in the house.... kitchen, curtains, flower boxes, a fireplace. I think she wants it to be a like a little princess/storybook cottage. Do princesses live in cottages?

A few weeks ago, I mentioned that the local Leukemia and Lymphoma Society chapter asked Mollie to be an Honored Hero for their Team In Training (TNT) season. TNT is a program that allows people to train for an athletic endurance event (marathons, triathalons, etc) while raising money for the Leukemia and Lymphoma Society. The meeting was great- it was impressive to see so many people interested in both supporting the LLS and improving their own health / setting a fitness goal. Mollie was a little shy, but after eating cookies and running around for a little while, she decide to participate in "Blood Cancer 101."

We left the decision of whether to participate as Honored Hero up to Mollie, but we didn't even present it to her until after some serious thought. This is an honor that nobody wants (you have to have a blood cancer) and I don't want to make Mollie feel like she's obligated to do these kinds of things just because she has cancer. At the same time, if we can do anything to help or prevent other families from going through the same thing, we'll do it. There is nothing good about cancer, so we have to make good things come out of it. We got to meet some new people (even a long time leukemia survivor), eat some treats, and see others helping people just like Mollie. And I found out that TNT has raised over $800 million for the LLS since it began. Wow.

My sister's friend is running a half marathon this weekend for TNT in California- Go Dianne!