Eating watermelon. Hey wait a second, that’s not real!

Catching some zzz’s during treatment.

Chatting with Katie about pediatric cancer.

Hi all – worked late last night so didn’t have time to update. Sally had a good day with Nicole at MSK, spending another day in isolation receiving fluids to flush out the chemo she received on Monday. So far, she has been in less pain and overall much happier than last week’s treatment. One small area of concern is that Sally’s area from surgery last week is red. Doctors are going to keep an eye on it, normally they would give her an antibiotic but already feel she has enough in her body between the chemo and the cold. Other than that, Sally has been in good spirits, mostly after receiving Tylenol as it looks like pain this week has been caused by normal teething. As Nicole said this morning, its nice to have a normal issue for once. When I got home last night, Sally was up for an hour being very playful. Mommy and Daddy were exhausted and dying to get to bed, but really enjoyed her company and seeing her laughing and smiling. She also managed to eat some chicken and rice on her own, Nicole has found that she’s most likely to eat when at home while the rest of us are eating with her. Who can blame her?

Sally is back at MSK this morning meeting with Occupational and Physical Therapy while getting her flush. We’re hoping the tests today come back that it is fully out of her system and we can get a break from MSK for a day.

Yesterday was Nicole’s appearance on Katie Couric, which I’ve included a link below. We want to thank Marie Sidoti, William’s teacher last year, for submitting Nicole’s name and making it all happen, despite the way it was scripted for TV. We were delighted that Katie Couric mentioned that September is Pediatric Cancer Awareness Month, and that the gold ribbons were clearly visible. A couple facts Nicole laid out that didn’t make the cut:

1. The government has $5 billion for cancer research and only gives 3.8% to kids cancer

2. In 25 years there has been one new drug for kids cancer

3. 4 kids die every day and over 40,000 are in treatment each year

We understand that not everything could be included, but we hope these stats will lead to a future segment highlighting pediatric cancer and giving it the attention it needs.  Hopefully Nicole will find time to write about the experience herself, in the meantime here is the segment, Nicole and AnnMarie look fantastic right?  http://katiecouric.com/videos/two-moms-strut-their-stuff-at-fashion-week/

One thing I forgot to mention about the fundraiser is that normally only 10 people or so at these events register themselves for the marrow registry, we had over 70! Thanks to all who participated! The biggest marrow need is from minorities and those of mixed races, please spread the word.

So far, everything has gone well this week with treatment, almost so well that it makes Nicole and I paranoid. This chemo is so strong, nurses told me it makes everybody from kids to adults feel lousy. I bumped into Dr. Kobos on the way out this morning and told her our fear, to which she said we shouldn’t be concerned. Nicole and I both view every little thing with paranoia – why hasn’t all her hair fallen out yet, why are her white blood cells so high, why is she feeling better than she should? This has been such a roller coaster of emotions and Sally has been the small percentage so many times, it makes us sensitive to every little thing. Nicole and I are physically and mentally exhausted and have so much to do we feel like we’re so deep in the weeds that we’ll never get out. They often tell us things will get better, which we’re really hoping for. Last night, I had a nightmare that Sally had died. I knew eventually this would happen, and know it will again, but was still awful. For a few minutes I couldn’t remember if it was real or not, thankfully realizing it was just a dream.  My eyes are red and swollen this morning, so must have been crying at some point. Couldn’t tell you how happy and relieved I was to get up and see a smiling Sally this morning.

Please keep Sally in your thoughts and prayers.

Matt