Go Huskies!!

We have had such a fun season already! 

 

 

 

 

 

Too much excitement!

Boo!! - I Scare Cancer...

 

 

I apologize for my delays in blog updates, we have had a busy past couple months.  Max is doing really well and we are ready to start making some changes to his treatments.  We are getting close to the dose of steroids where he relapsed last year and would love a holiday season free of crisis, so we are trying to be proactive and establish a new game plan for the next few months.

 

Seattle Children's has dropped the clinical COG trial Max was originally a part of and we are exploring some other protocols.  It looks like the hospital will be adopting a popular European protocol, using Dexamethazone instead of Prednisone (which is a more potent steroid that has better effects crossing the blood brain barrier) and Rituxan (the chemo drug we used this spring) instead of Cytoxan (the chemo drug we used last year).   After consultation with a Pediatric Oncologist at Lucile Packard Children's at Stanford it seems there has been some luck with patients using a strong pulse dose of Dex for 3 days a month in hopes of transitioning off the dependance on the daily steroids. While there is no literature to back this up, it seems like a logical plan to try since we haven't had luck in the past with other protocols.  Max had a few sniffles after school started and rather than bumping up his Pred we opted to begin this new protocol.  It means a couple months of doubling up on steroids, which hopefully won't bring with it many new side effects or tough adjustments.   He started this past week and so far it hasn't been too bad.

 

We still have plans in the works to visit Boston soon, the travel clinic has taken a bit longer to establish than originally scheduled and we are hesitant to make the trip without all the specialists on board, we would hate to make a trip now and then need another trip in a couple months. The main neuro-immunologist has been great about communicating and discussing treatment options by email and conference calls.  Insurance is still busy trying to take care of all the approvals through the medical director and we are still trying to make sure we have all of our counterparts in place here in Seattle to be able to receive information and treatment plans from these other specialists.

 

Max still continues to be seen by PT, OT and Speech Therapists weekly through Children's Hospital to help us watch for fluctuating symptoms as we change his meds. Its been trickier to get him scheduled for all his various appointments now that he is attending school, the last time I pulled him out of school he just grumped all day and refused to comply with the drs because he was so bummed about missing his class, so we are trying our best to take care of everything after school which makes for some long days for little Max.

 

Max has continued to not show any growth in height or weight this year again and is falling farther off the charts, he now has the medical diagnosis needed to begin daily injections of growth hormones which we have been encouraged to discuss now, with the hope that he would begin them within the next 3 months. We are seeking some more opinions and needing to do more research on this risky addition to his treatment. We really would like to hold off until after our next round of scans to make this decision.

 

Thanks for all your continued prayers, we are so excited that he is doing so well, a little nervous about changing things, but hopeful that God has it all under control. 

 

Tinkerbell Premier

Make-A-Wish invited our family and friends to attend Seattle's Premiere of the new Tinkerbell Movie, where Tinkerbell finds her long lost Sister.  Radio Disney was there with lots of goodies and games and the kids all had fun checking out this new 3D movie.