our little victor: New City, New Specialist

Hello Boston!

The last week of August was a long-awaited trip to Boston. We were able to work some fun into the 3 day trip, but the reason for the journey was to meet with a new specialist, Dr Mark Gorman and Boston Children's Hospital.

In April, our former specialist left Springfield, IL and SIU to pursue _____ (we have no idea what is next on his agenda). However, 6 months later, we were unwilling to wait to find out where he would end up. Oliver is doing great, but we needed a point of contact to facilitate the taper of his steroid, ACTH and to answer any questions we might have.

Thanks to our support group on Facebook, we were able to locate another specialist- Dr Gorman- who was willing to meet with us and check in on our treatment plan.

In the end, Dr G was very pleased with Oliver's progress! After a very long discussion and exam we decided to tweak a few things. We will be reviewing the plan with our local Neuro on Tuesday, but so far our plan is to increase Ollie's infusions to every 3 weeks. This will (eventually) facilitate a more aggressive taper of ACTH. Oliver tolerates IVIG exceptionally well and there are not any long term side effects- ACTH carries a VERY long list of nasty possibilities.

The biggest and most exciting piece of news is that Oliver's blood counts have returned to "normal" levels following his chemo treatments (Rituxan) in April of 2013. Dr Gorman encouraged us work with his school coordinator to find an appropriate pre-school for Oliver!! While risk of infection still exists due to the steroids, the rewards of socialization are greater. Ollie has visited a few with Taylor and says he really likes playing with kids:)

Thank you for your prayers- please continue praying and covering all the OMS warriors- several this month were diagnosed with Neuroblastoma and one little lady was just discovered to have stage 4 Neuroblastoma in her bone marrow. She is a strong fighter, but needs all the support she can get.

Here are some pictures from Boston!

Waiting to take off!
He was a super traveler.

Cheesecake Factory
(daddy's favorite dessert restaurant)

Ollie tried everything, but did not want to eat the "trees" (broccoli)

"Victory" high five

Family Selfie

We tried to get Ollie to throw away his mask after our appointment with Dr Gorman.
He was not interested. It is still in my purse. I'm hoping for a photo-op soon!

After the Dr we checked into the Yawkey Family Inn and then took 4 different train lines to visit the New England Aquarium.

Myrtle the Turtle!

City boy at heart…fell asleep on the train.

The next day we took a walk around Boston-
we had planned on a "Duck Tour", but missed the boat (not literally) and then got a little lost in the city:) This was a historical fire department…so COOL!