Gains and Losses

Now that we have made it through the first six months, and the most clinically intense part of Mollie's treatment, I find myself reflecting on this whole experience.

I am still mourning the losses. Mollie won't have that normal, carefree childhood that every parent wants for their child. And Matt and I will always be concerned about her health. We will always worry about chemo, follow-up, long-term side effects (like diabetes, learning disabilities, AVN, secondary tumors, etc.), relapse. And that's if things continue to go well!

On the other hand, through this experience we have gained tremendous clarity. It has cemented our marriage and our family. Our priorities are clear. I know I am a better mother and a better person. It is easier to let go of the small stuff. I think I'm less judgmental (or more likely to keep my opinions to myself). I am still working on living in the moment, not what was or what will be.

Lucy has been impacted too... having to sit through all those clinic visits and hospital stays. But she's so young, she will have no memory of what life was like before Mollie was diagnosed. Lucy has been Mollie's constant companion throughout her treatments, and I hope that she and Mollie will have a good relationship as they grow up.

And then there's Mollie, my little hero. She's tough. She's resilient. She knows she's different from most of her friends, but she doesn't seem to think it's a big deal. At 4, I doubt she's feeling the same kind of loss that Matt and I feel, but she has been through a lot. All of the changes in her life and the drugs will continue to have an emotional impact. She will start seeing a clinical psychologist who specializes in medically fragile children- hopefully this will help her work through some of her feelings about this ordeal. Because she's so young, I don't know what the long-term psychological effects will be. In Mollie, I see a greater fear of the unknown than before, but I also see strength, courage, the ability to ask questions, and a tremendous sense of caring/empathy for others.



Well, Mollie is feeling the effects of the steroids. She gets very tired and loses her ability to make decisions, especially decisions about food. Case in point, today she wanted pesto pasta, her normal "steroid" food. I made up a big batch; she ate a little and then announced that she didn't want pesto. She settled for tortillas and cheese at lunch, but tonight I could hardly get her to eat anything for dinner. And we tried everything.

Today is day 2 of 5 steroid days. I hope we find some food that she likes soon.


Just a few quick answers to a couple of questions:

Q: What kind of buttons is Mollie collecting?
A: She's collecting the kind of buttons you sew on to clothes (not political/campaign buttons). Her collection is quite interesting now... thanks to everyone who has sent her buttons!

Q: How do I leave a comment on the blog?
A: Go to the bottom of the post and click on the number of comments (in pink). This will open the "leave a comment" window where you can type in your comment. You will have to type a verification word and then select your identity. You can select "anonymous" radio button or the "name/URL" button and just type in your name. You don't have to have a google account for this.



Mollie also got the all clear to start school again. Like tomorrow. We'll talk with her school and teachers and probably have her go back next week. More worries for me (sick kids, rough kids, etc.), and I'm sure there will be a period of adjustment, but I think Mollie will be glad to go back.

Oh yeah, and 2.5 hours after we heard "they've ordered the chemo and we're waiting on the call from the OR", we are still waiting.... hungrily.

Updated: LP went fine; we went for burritos after. Yum!

Update from the clinic

Mollie's ANC is 1400 so we're starting maintenance. The chemo has been ordered, so Mollie has to get her port accessed, get the chemo infusion, and then it's over to the hospital for the IT chemo (spinal tap).

This is great news! We've been waiting to get to this point for 6+ months! Mollie is somewhat miserable because she is hungry; but she's not grouchy- she did offer to let Molly play with her Elmo toy a few minutes ago. As long as she's distracted, she does fine, but she tells me she's hungry at least once every 5 minutes.

Today Mollie is planning to bring her doll Kirsten into surgery for the spinal tap. And Michelle is watching Lucy- a HUGE help!

She also starts steroids today- a 5 day pulse. I'm anxious to see how this goes because she will get steroids once a month for the next 2 years.