Four Wishes

One of Mollie's favorite things to do when we go to the botanical gardens is to throw a coin into the fountain and make a wish.

When we went last week (with my mom), Mollie made 4 wishes:

I wish I would never ever have chemotherapy, ever again.

I wish I can go to Disneyland and the doctors would say it was okay.

I wish I would go swimming.

I wish we could come back to the zoo someday.

And we just found out Mollie will be getting a wish from the Make-a-Wish foundation. We are meeting with her "wish facilitators" tomorrow evening. They lost their own daughter to a congenital heart defect. They had a wonderful "wish" experience with their daughter and I am looking forward to meeting them.

Mollie understands (sort of) that she'll be getting a wish that will help her stay strong in her fight against cancer. She comes up with all kinds of stuff but the top three are: a "playhouse with a fireplace, tea set, and garden", a trip to Disney, a trip to Hawaii. This is Mollie's choice and we don't want to influence her (well, we have to provide some guidance so she doesn't wish for something that she would scare her). I'm interested to see what she finally chooses.

Fairy Day in a Box

My friend Gen had a Fairy Day in honor of Mollie at her bookstore. Yesterday, Mollie received a box full of fairy activities for her to do and cards from people who attended Fairy Day in Bishop, CA. She was really impressed that she got so many cards from people who don't even know her. Thanks for making her day, G!


The postman also brought a card from Emma Grace. Mollie's reply is, "Let's play sometime soon!"

She got a picture from Izzy, who moved to Seattle. Mollie always asks when we're going to move to Seattle, but has settled on being pen pals with Izzy for now.

And she really loves the coloring book from Uncle Jim.

So, thanks everyone for helping to keep her spirits up!!

Food for thought...

This article, Rethinking the War on Cancer, just appeared on Newsweek's website. Overall, this is a very thought-provoking article and it is full of interesting bits of information (Did you know President Bush's sister died of leukemia when she was 3? And that Farber first used the first anti-folate "chemo" drug in 1948.) There is also a section on the success of pediatric leukemia treatment (referring, presumably, to the Children's Oncology Group).

No more steroids for 23 days! Woo hoo!

Childhood Cancer Awareness Month

September is National Childhood Cancer Awareness Month.

We certainly were not very aware of childhood cancer before Mollie was diagnosed with leukemia. I had no idea of the progress that has been made in treating leukemia in the last 25 years. But I also had no idea how many children suffer from cancer, how difficult it is to do research on childhood cancer, and how little is known about the causes. These are just a few statistics. For more detailed information, I'll direct you to the links in the sidebar.

Childhood Cancer Facts

• Each school day, 46 children are diagnosed with cancer.
• One in 330 children will develop cancer by age 20.
• Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.
• Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
• From www.candlelighters.org
  

You can raise money for the Children's Cancer Research Fund by without even opening your wallet. Simply watch a few short videos at www.completethecure.com. For each video you watch during the month of September, a group of corporate sponsors will donate $0.25 to the research fund. You can watch these over and over and send the links to your friends, put them on your websites, etc.

For those who like to shop, you can purchase a Macy's shopping pass from CureSearch. This $5.00 pass give you a 10-20% discount on all Macy's items for one day (Sept. 20). Yes, that included mattresses, furniture, and rugs.

Up and Down

Well, 3.5 days into the 5-day steroid pulse, and we're feeling it. But, all in all, it's going quite well. Mollie's energy level is up and down and she's having dramatic mood swings. Everything about her can change (and does) at the drop of a hat.

It seems like she really struggles to express herself while she's on the dexamethasone. Sometimes she's full of insight, and then a few minutes later she's trying to explain something she can't find the words for. From there, it's a downward spiral.

I am really glad my mom is here to run interference right now. With Lucy teething and Mollie's moods, the days are really challenging.

It is official

Today is Day 1 of Interim Maintenance (IM). Mollie is "scheduled" to be off therapy 2 years from today. I can't look that far ahead yet, but it feels good to know that we've come far enough for the doctors to already be mentioning the end of therapy.

Clinic went well but we had a long wait. Mollie was walking all over the office today, chatting everybody up. Matt remarked that when this all began, and Mollie was very shy and defensive around the medical staff, that Dr. V said, "Just wait a few months and she'll be running around here like she owns the place." So true.

IM

Tomorrow (Weds) Mollie starts Interim Maintenance (IM) if all goes as planned. No spinal tap (yay!), but she will get IV and oral chemo, including methotrexate by mouth. This will be her first time taking oral methotrexate so we don't know how well she will tolerate it. She will also start a 5 day "pulse" of steroids. This is basically going to be a little taste of the long term maintenance (LTM) regimen she'll be on for about 2 years.

Consolidation was a breeze and we are hoping Mollie will tolerate this next phase just as well.

Requests: The child life specialist at the clinic said that she has a hard time finding "girl" toys to keep available because 1) they need to be able to be sanitized between kids (so no soft surfaces or wood) and 2) they can't be choking hazards. She's found a couple of "Dora" toys and Mrs. Potatohead, but not much more than that. Any ideas?