7th Infusion - IVIG

Monday was spent at Children’s hospital receiving his first dose of the IVIG without the chemotherapy mixed in.  He did great, it was a shorter infusion time but with dr. visits and labs, still ended up being an 8 hour day for Max. He enjoyed visits from Grandma’s, movies, coloring, visiting with other kids getting infusions, a leisurely lunch and a snooze on grandma’s lap, he was so tired the nurse was able to de-access his port and rip the tape off without even waking him up.  He did really good getting the infusion and had a couple days of being clingy, feeling yucky and extra tired.  The IVIG infusion cans still cause side effects like headache, flu like symptoms with achiness, fatigue and others.   Overall he did so much better without the chemo.  We have even noticed an increase in his appetite since the chemo effects are wearing off.  The steroids make him crave salty foods, so I have been trying to limit him from too many snacky foods.  Anyone have ideas of healthy food that might satisfy his sodium desire?

6 Month CT Scan Results

Great News! Max’s 6 month CT showed NED – No Evidence of Disease or Metastasis!  Thank you for all your prayers!!  

With the news of a clear CT scan we were able to make a schedule for the next month.  We will still continue to be seen weekly at the hospital on Mondays for labs, nursing visits, oncology appointments and speech and physical therapy.   He will have other checkups with other providers like neurology, endocrinology, dental, and neuropsych sprinkled in on other days in the next month.

Bash For Max

The Bash for Max Benefit held on May 21^st  was a huge success.  It was an evening full of great food, music and fun from all involved and a warm spirit of help and healing permeated the event. We feel so blessed to have such a great community surrounding us and letting us know that we are not alone in this journey

The night consisted of an incredible silent auction with over 100 donations from individuals and businesses in our community, a great dinner donated by King’s Manor Senior Living Community in Tacoma, awesome cupcakes made by Stacy Gibson of Graham & Graham Eldercare and live music by Doug Deems & friends.  The evening was a huge success with over $15,000 raised after the matching grant from Thrivent Financial. The great turnout and outpouring of support, prayers, and good wishes from all was a true blessing to our family!

We would like to send out some special thank you’s to those who made the event possible.  Karen Wright had the idea to do something to bless Max, after organizing several other events, “A Bash for Max” was born.  She put in countless hours organizing the location, volunteers, selling tickets, acquiring auction items, and planning the whole night!  Thank you so much Karen, words cannot express our gratitude!  Nicole Coit, the Administrator of King’s Manor, did as much work and orchestrated everything behind the scenes.  Thank you so much Nicole for everything and to all the King’s Manor staff who played a huge role in the success of the night.  To Kristi, Sheri, Theresa, Natalie & Oscar, thank you so much for donating all of your time & to help to make everything run so smoothly!  There were so many people that helped with the planning, setting up, serving, parking attendants, cooking, decorating, praying, selling tickets, fundraising, acquiring auction items, filling the seats, cashiering, cleaning up & I am sure doing a lot of other things.  To everyone that helped in any way…THANK YOU! 

A sincere and heartfelt thank you goes out to all those volunteers, friends, family, colleagues, and businesses who attended and participated to make the evening such a special event and celebration!  Again we couldn’t have made it through all this without all the support, prayers and help from each and everyone of you.  Thank you for rallying around Max and our family to help us through the last 6 months and your continued support for the big plans that God has in store for Max’s future.

Max Facts:

• Max has Stage 2b Neuroblastoma Cancer (Malignant tumor of the Adrenal Gland)
• Max also has an extremely rare Neurological autoimmune paraneoplastic syndrome called OMA (Opsoclonus Myoclonus Ataxia)
• 600 kids a year are diagnosed with NB (only 5-6 with OMA)
• OMA causes body jerks and abnormal eye movements, ataxia (tremors, shaky, low muscle tone, learning and behavior problems, and speech impairment.)
• OMA symptoms may return during illness, fever, stress, sedatives or anesthesia, tapering or discontinuation of immunotherapy, and after immunizations.

·         Relapses of OMA are common and may be treated with additional rounds of chemotherapy, steroids, and blood product infusions.

·         Checkout Max’s Beads of Courage – He collects beads for each procedure, appt, and poke he receives.

·         Max has seen 42 different doctors or providers in 6 months

·         Max had 106 Dr appointments at Children’s Hospital since Nov.

·         84 Speech/Physical/Occupational Therapy appts since Nov.

·         He has 5 different therapists meeting with him weekly

·         Has had 9 tests or procedures needing full anesthesia

·         14 overnight visits in the hospital/2 ER Visits since Nov.

·         He can take up to 9 medications twice a day

·         He will get monthly infusions through the port in his chest for 2-3 more years.

·         Max is now eligible for a wish from Make-a-wish foundation.

Bash for Max

You are cordially Invited to

A Bash for Max

fundraising event to benefit Max Burt

and to help us celebrate his journey

Saturday, May 21, 2011, 5-8pm

Lighthouse Community Center

5016 A St.

Tacoma WA 98408

Spaghetti dinner

courtesy of King’s Manor Senior Living Community

Homemade dessert

by Stacy Gibson

(Graham & Graham LLC)

Live entertainment

courtesy of Doug Deems and friends

Silent Auction

More than 50 items including: Autographed memorabilia, restaurant and entertainment packages, season passes and tickets to concerts, family friendly events, amazing gift baskets, spa packages, and so much more!

donated by Local Businesses and

Health Care Providers of Pierce County Members

Suggested donation: $20 per person

or a table for 8=$150.00

Contact Karen Wright or Nicole Coit

King’s Manor 253-538-7222 or csm@kingsmanorslc.com

Donations will benefit the "Max Burt Benevolent Fund" and can be made at any BECU or mail/drop off checks to King’s Manor Senior Living Community

8609 Portland Ave. East, Tacoma WA  98445

Go Huskies! Spring Game



 We had a beautiful day to enjoy our favorite things, hanging out with the family and watching the huskies. We even got to enjoy a free hot dog lunch, a bounce in the blowup husky helmet, face painting, and a fun time watching an exciting game.