January 5, 2009

HAPPY NEW YEAR!

We hope everyone had a happy holiday! Ours was wonderful. We had two whole weeks that were 100% carpool, homework, and medical appointment free! It was nothing short of heavenly!

Today, it was back to business-as-usual though. The kids went back to school, and it was MRI day for Evan. He had the scan first thing this morning and we met with the neuro-oncologist this afternoon to get the results. We got good news and great news!

The good news is that the tumor showed no sign of new growth. It didn't shrink, but as long as it's not growing - it's good news!

The great news is that if the next MRI (in March) comes back again with no new growth, the doctor is planning to take Evan off the rigorous treatment schedule and put him on what they call "maintenance chemo." The chemo drug and dose will remain the same, but he will only have to go in for treatment once every three or four weeks!

In March, Evan will have been on the heavy treatment schedule for a full year. The doctor is hopeful that this will have been enough time to put the tumor into a dormant stage, and that it will remain dormant even on the lighter treatment schedule.

The thought of having three weeks between treatments, instead of just one, was enough to put a huge smile on our faces! It made us feel like we might actually be on the home stretch with this thing!

Thanks for all your prayers and support. This would be so much harder without all of you behind us!

Love,
Margot

January 5, 2008

HAPPY NEW YEAR!

Dear Friends and Family,

Happy New Year!!! We hope you enjoyed the holidays. Our Christmas was an incredibly memorable one! It was an experience we will never forget! We were blessed with countless acts of loving service, as well as gifts of unbelievable kindness and generosity. Some of these gifts were given in person and others were given anonymously. It was truly overwhelming!

Thank you! Thank you! Thank you to all of you who brightened our days and lifted our spirits, in person or in secret, through little notes, cards, e-mails, gifts, or service. We appreciate it all so much, and it has made us anxious for the day when we’ll be able to pay it all forward and do for someone else what has been done for us. Until that day comes, I think we will feel incredibly unworthy and undeserving of so much love and attention. There is just no way to express how grateful and humbled we feel by it all. Thank you again!

We had our monthly appointment with Evan’s Oncologist last Wednesday, so we have a couple of new developments to report.

The best news is that Evan is finally off the nasty steroid (Decadron) that has caused so many problems. Yeah!!! We are very happy to be done with that drug! Some of the short-term memory problems started coming back as we got lower and lower on the dose, and it might get a little bit worse over the few months as the drug leaves his system completely. But right now, that seems like a small price to pay to get rid of the eye problems, the swelling in his face and upper body, and the joint and muscle pain.

In order to start rebuilding some the muscle tissue damaged by the Decadron, and improve the flexibility in his joints, Evan will be starting Physical Therapy next week. I am thrilled about this! I think it will be so good for him to get out and get some physical activity. I really hope it will help him feel a little better and a little stronger. He has his first session on Monday.

Evan finished the first cycle of Chemotherapy on Christmas Eve, and then had a week off before we met with the doctor. Since Evan’s white blood cell count remained so high during that first cycle, and since he didn’t get horribly sick, the doctor decided to increase the dose of chemo for the next cycle. Evan was on 160 mg/day in December. For January he’ll be taking 180 mg/day. If he continues to tolerate the chemo well, they will increase the dose again, to 200 mg/day, for February. The 200 mg/day would be the highest dose they could give.

This information came as a bit of a shock to us (we naively thought the 160 mg/day was the highest dose). We haven’t decided yet whether this was good news or bad news. If the higher dose does not make Evan horribly sick, and it can shrink the tumor faster, then it will be good news. If it makes him horribly sick and we have to go back down to the lower dose, then this will be a long miserable month, and from now on we’ll know that we’re fighting this battle without the strongest weapon available. To put it mildly, that would stink!

So – cross your fingers, and send out a few prayers that Evan will be able to tolerate the higher dose! His next MRI will be at the end of February, after he finishes the third cycle of chemo. Take care, and we’ll keep in touch!

Lots of love,
Margot