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!

All told, we walked over 15 miles in 3 days!

"GOD IS OUR REFUGE AND STRENGTH"

We had an hour and a half delay in Boston…Ollie wanted NO MORE PICTURES!

Our little traveler "hiding" under his Spidey blanket

KICKOFF!! 6th Annual Toy Drive & Fundraiser for OMS Awareness and Research

Click here to donate

The Childlife Department at Mott provides therapeutic play, distraction, cheer and all around enhances the experience of the children at Mott. 

They use our donations to: 
*comfort and entertain kids in the ER- often beanie babies, books, or little trinkets.  
*give kids a small reward for being brave during their "pokes" (port and IV access)
*stock the in-patient and infusion clinic playrooms.  
*provide in-room relief for kids who cannot visit the playroom
*give a gift to kids who are admitted during their birthday or Christmas.


The following are ideas given to me by the ChildLife staff when asked what was most needed….this was also when I found out they do not have a budget (AT ALL) for refreshing the playrooms, restocking the craft supplies and giving gifts to the kids.  They rely entirely on donations and are so very thankful for each and every item! Each item must be new (for infection control), non-relgious and non-violent.

Donation Ideas:
-unopened "prizes" from kid's meals
-decks of cards or card games
-craft supplies (ANY VARIETY!!:)
-board games (pieces are lost over time, so even the classics are appreciated!)
-books
-PLAYDOH (cans must be given to the child each time for infection control)
-stuffed animals
-puzzles
-$5 Kohl's Cares items (double good deed)
-handheld electronic games
-Wii games (each floor has a mobile wii gaming station that was donated!)
-cars
-blocks
-animals
-trains
-action figures
-dolls
-nail polish (for the older girls)
-unfinished wooden shapes and paints
-balls
-bowling sets
End of summer is a great time to find discounted craft and school supplies.  I was recently at Joann Fabrics and found TONS of discounted kids crafts.  Dollar stores and FiveBelow are also a great sources for inexpensive items.

Mott and OMSLifeFoundation are 501c3's and donations are tax deductible (please see a professional tax preparer if you need help with the values)

We had a great turn out last year…our goal was 250 items.  We were able to drop off 271 toys, books, games and stuffed animals to Mott… at Ollie's next IVIG infusion he found a new toy he LOVED….which just happened to have an OMS Life tag on it.  Complete coincidence, but he was playing with a set of foam blocks his MIMI had donated.  Your donations make a difference.  They really do.

You may send items to me:
Katie Whitt
44530 Ford Rd
Canton, MI 48187

or drop them off at:
The Saline Rec Center
1866 Woodland Drive
Saline, MI 48176

Paparoni's Pizza 32801 Hayes at 14 mile Warren 48088 586.296.7700



With gratitude,
The Whitt Family

Gahwait! Ollie's year in pictures

Winter 2013-2014 was arctic!
This was one of the few times Ollie was actually able to get out in the snow.
 Despite RECORD amounts of snowfall!

Oliver was given the chance to visit the North Pole
with other Mott Kids.  He loved flying on the plane, singing songs and getting presents.

Since Mommy and Daddy had to work, Auntie Sarah took Ollie on his North Pole adventure.
Thanks Auntie!

Ollie had to go to the ER on Christmas eve for an unexplained fever (important to check out because of his port), but still wanted to visit Mimi and Papa after we were discharged.  It was worth the late night to see his face when Mimi and Papa gave him his new Pirate Ship bed. 

Spiderman, Oliver's favorite superhero
came to visit his birthday party!
He was excited, but a little unsure.

Family picture

Shortly after the 2013 Teddy Bear Drive for OMS awareness, we found one of the toys that was donated in the playroom Ollie uses while at his monthly infusion.  He loves these blocks, but we've also seen may other kids enjoy them as well!  

Happy Easter!
Ollie had 3 Easter parties-
Lakehouse, our house, Mimi and Papa's house.

Easter 2014
Avery, Oliver, Addyson

Parcheesi at Papa Cookie's house, Ollie won!

Dexter Rock Climbing

Finally playing with a *few* healthy kids!
This is Vivi, Ollie loves her!

Oliver, Ella and Vivi with Kara and I at our friends' mini-golf in Westerville, OH.
Ollie still talks about seeing Ella and Vivi:)

Jenni, one of my best friends from growing up lives in  Westerville area and brought her son, Paxton, to lunch and a playground with Oliver.  He had SO MUCH fun having another little boy to chase around!  It has been several months and Ollie will ask to go to Paxton's playground with him on occasion. 

Thanks for checking in on me!  The next blogs on my mama's mind will share all about my African Safari (in  Ohio), walking with Jace, our trip to Boston/medical update, and info for the 2014 OMS Teddybear/Toy drive.

Whenever anyone asks Oliver how he is doing he answers, "I doin' gahwait!" and smiles a huge smile.  This kid is so full of joy, love and affection.  We are thankful he seems psychologically unharmed by the last 18 months of his life (praise God!!).  Looking forward to more normalcy going into next year.  Thank you for your prayers, we ask you to keep them coming as we work to completely wean Ollie off of steroids in this next year.

2014- The Year of Triumph

One of my sister- friends recently dubbed 2014 the Year of Triumph.  I am 100% in agreement with this statement.  And it will be, because we choose for it to be.  We spent last year, 2013, in the year of Victory.  Which is wonderful in and of itself.  But Triumph implies celebrating the victory.  Meaning, it is already done.  We won.  Thank you Jesus, I love that!

(I wrote this awhile ago, but neglected to post it….still relevant.  Still happening!)

3 Year Pictures (sort of)

This summer we finally got some new professional shots of Oliver!  He was 3 1/2 at the time, so I was a little off of the "birthday" schedule we had started out on.  These were worth the wait…Summer pictures are WAY better than January pictures.  Big thanks to Katie Kelley Photography for taking so much time to grab a variety of shots of our little guy (who would prefer to look ANYWHERE other than the camera).  I was also happy to have Taylor's mom, Chris, with us that day!  Ollie loved having his Mimi and we got some "gahwait" shots:)