Update on Jackson

Hi Everyone,

Wow! Life has been busy the last few months! Nothing too specific, just day to day, NORMAL, things. We have just been going to school, work, daycare, and doing whatever we need to on the weekends. The last few weeks have been especially busy because Jackson started T-Ball. He is on the same team as his cousin Gavin. They started out with no coach this year, so Warren and his brother Wayne stepped up and volunteered. That means that Megan and I are team moms by default! Just one more thing to add to the already crazy schedules that we maintain. So far it has been fun, other than a lack of organization by the league. The team had their first game on Saturday after opening ceremonies. Jackson maintained very well, although he did get pretty tired by the third inning.

We are headed up to UCSF on Wed. the 23rd. He has an endocrinology appointment at 3pm, and on Thursday the 24th he has an MRI at 7:30 am, neurology appointment at 11:30, and an oncology appointment at 2pm. That is gonna be a busy and tiring day, especially for him after having anesthesia. He is my little trooper though. All the appointments are in the same building, so no traveling thru the city. I am frustrated with the oncology dept. right now because they only scheduled the MRI for his brain, not brain and spine. I was never informed that this was the plan, and he hasn't even been off treatment for a year yet. When medulloblastoma reoccurs, it can show up in the spine also, and sometimes even before it shows up in the brain. It seems way too early to only scan the spine every 6 months vs. every 3 months like we have been doing. I have a call into his oncologist and I am waiting to hear back from her. If we had discussed this in office, I would have insisted on the spine scan also. I am frustrated! The scan anxiety is bad enough, let alone the fact that they may overlook something so early on. I don't want to wait 3 more months to wonder if he may or may not have something starting in his spine. I will post when I talk to his oncologist about all this. Otherwise, all is well, and I am interested in what endo will have to say. Jackson does well taking his meds for thyroid and his cortisol levels. I am wondering if they will start to look into growth hormone supplementation for him yet. May will be 1 year since he went off treatment, so probably they will supplement later.

So please say prayers for my little hero that he will have clean scans of his brain and SPINE! I hope you all enjoy the pictures of our T-Ball champ!

Jenise