Mrs. McGraw (Elle's music and choir teacher) and Mrs. Hertzenberg (Elle's principal)with Elle, sporting their new lanyards
Hans, finger painting at home this week. My sneaky trick to get him into the bath!
So, wow, I wouldn't have thought that a week later we'd still officially be playing the waiting game. But - such is life! TCH Fed Ex'd the scans to Dr. Maris at CHOP, but they didn't make it into his hands before he had to leave for COG (Children's Oncology Group meeting this week in Denver, where he'll meet up with Dr. Russell and all of the other NB docs). So we don't have his official recommendation re: the MIBG therapy. So, as it stands right now, we are most likely going to start up Hans on another round of Irinotecan/Temodor Monday - unless Dr. Maris contacts us sooner than Monday at 10:45 am.... ARGH! But, this extra week off (although terrifying) has been ultimately relaxing - allowing us a chance to catch up and take a breath. We usually won't allow Hans to sit around for extra days off treatment - but that, I guess, is the drawback of having multiple centers looking at your kid. The waiting time somehow increases exponentially as it is tricky for these docs to share information and put their heads together. However, since Hans' scans are somewhat ambiguous at this point, we are extremely pleased that there will be multiple sets of trained eyes on them. Hopefully the medical advice we get won't be so contrasting that we're making a stretch to come up with the 'best' decision...
If MIBG is not indicated at this time - we will try to arrange a consult with the folks up at Memorial Sloan Kettering (MSKCC) in NYC, and possibly another team in Vermont! I am having a very tough time fighting the urge to stay away from the shops to update my winter wardrobe. Luckily I found a 20% off Macy's coupon in the paper today;) And I found some cute fleece pants for Hans from Old Navy. He won't wear denim. I think it's because he was in such pain with his large belly tumor upon diagnosis, that he has a strong neg. association with snug-fitting clothes - hence, his preference for his jammies. I'm going to go back and stock up on these fleece pants in every color to be ready for whatever consult we need to go on...
We are floating along nicely this week - sort of in a bubble of protection from the good news on the scans. When you're relapsed NB, though, you're always wondering how temporary your foothold on safety might be. We're trying to find the most proactive next-move, but it's a tough call...
Thanks for checking up on us, and have a groovy weekend!
Lara
3 comments:
I wondered if John Maris would see the scans before leaving for Denver. I'm glad that you seemed to take the extra week in stride. I will send the items I have been wanting to share with you and Hans with Walter and Erin on Monday if you will be there. I think I'll just set them in the van and you can ask him to run get them if you need them.
I will also have Erin bring the lanyards in the car too.
If you miss them on Monday, Erin and I will be there a good portion of the day on Tuesday.
VB
OH, the lanyards are fun...the ladies lovely!
Waiting games are the toughest of all, but I am pleased you are catching your breath!
Hans, you look like you are wearing COLOR in fine style!
You take after Cousin Erin...she didn't like snug clothing at all when she was your age!!!!
Enjoy a fine fall weekend! My class just returned from an hour at city park! The enjoying rolling down the hill and frolicking in the autumn leaves!
Love to all,
Aunt Susy
La - Hansie comes by not liking snug waistbands quite naturally. Both Gram Gram and I hate(d) them. With elastic, you can just stick out your stomach all you want to! lots of love to all, pl
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