All Around Update + Chemo VII

Wow... Max started his 7th round of chemo today - on time I'd like to add. The booster GCSF shots he received over the weekend pretty much cinched it for him. Max is feeling good and doesn’t have too many complaints right now. It’s great to see him with a little head of hair and displaying some energy. Not really what you’d expect from someone starting their 7th round of chemo. Max and I had a pretty good day at the hospital from 8:15 to 6:15 (Monday's are long!) but we're no worse for the wear.

Max just had a CTscan of his feet and knee last week as well as a whole body MIBG (bonescan). It doesn't appear that there are any new hot spots (from what my untrained eye could see on the MIBG). There is a singular spot on his spine still, but nothing lit up anywhere else. The CTscan results came back with nothing. Max had been complaining about pain on the bottom of his heels and in his knee/leg area. We have reason to believe that his heels were hurting because he's been way more active (running, playing, etc.) since he began his tube feedings. The cause of his knee pain could be the same, but could also be attributed to one or more of the medications he takes. It's great to have a doctor who's willing to react as fast we need. The emotions of having a child with this cancer can be overwhelming and the help we get from Max's oncologist is one less burden. Thanks, Dr. Roberts!

Max’s g-tube is apparently working. We checked in for chemo today and found that his weight has gone up to 17.1 kg from 15.9 kg when he had it inserted three weeks ago. "Woo-hoo," as Andy so eloquently put it via text message! We are also going to change his appetite enhancer back to Megace. The periactin (sp?) we tried didn’t do anything, so we’re giving the first one another go around. Started it tonight.

Max’s hair is partially grown in and looking very fuzzy – like a duckling. I may need to take him down to the shop for a little buzz to even it out. I did notice some hair on the pillow in clinic today, so maybe I'm jumping the gun on a haircut!

I took Hannah and Max down to the model train museum this weekend. Usually Andy is in charge of this outing, however he had just taken Max there the weekend before so I took the reins and we headed down to Balboa Park for Western Days at the train museum. The kids dressed up in their western finery. Max in his blue plaid Wrangler shirt with slick black leather vest, and Hannah in her pink suede, fringed vest and matching skirt. Don’t forget the hats! We ended up in the fun, loud train room - O gauge - where one of the gals, Amy, who works there noticed Max with his obvious ‘currently-in-chemo-treatment’ look and struck up a conversation with me. She introduced me to Jon Everett, O Gauge Club President, and they offered Max the opportunity to come down on a Tuesday and run the room (control the trains)! F-U-N! Max is stoked and can’t wait for the next Tuesday we can make it down there.

Max and Hannah's school has a KidsKorp group that meets after school once a month. This month they've decided to honor Max and Hannah. They're going to read a beautifully written book called "I'm a Superhero" by Daxton Wilde (and his mom). It's a four year olds' interpretation of fighting cancer. The kids at the meeting will be able to ask questions and Hannah will be there to help answer them. They will make orange bracelets for all the kids in school to wear on a special day just for Max. (date tbd) This will really be a great opportunity for Hannah to feel involved and important during this time where she's a "second-rate-sibling" (to steal a phrase from Syd Birrell).

If you haven't already checked over on Max's Kid Friendly Site, be sure to. Eight year old Cousin Alaina spearheaded a recycling effort at her school and made $600 for the playroom at the hospital. Wow, again, Miss Alaina, and thank you!

A huge thank you going out to everyone bringing over meals and to Kristen and Lori for organizing this project thebelskys@earthlink.net or lorigood@san.rr.com. Getting home tonight at 6:45 and being able to just sit down and eat is such a blessing. You people are great and we really, truly appreciate you! (PS - we're covered this week ;-) contact Kristen or Lori if you'd like to be included in their future emails.)



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