11/23/10 2pm: Email Update

From: Josh and Kari <joshandkariburt@yahoo.com>
To: Josh and Kari Burt <joshandkariburt@yahoo.com>
Sent: Tue, November 23, 2010 2:17:27 PM
Subject: Update on Max Burt - 11/23/10 2:00pm

Dear Family and Friends,

We are so sorry that we haven’t been better about communicating the last couple days, we have had quite the last 24 hours. Here is what we know so far and answers to frequently asked questions:

What does Max have?  A neuroblastoma of his right adrenal gland.  (A collection of cells of the sympathetic nervous system which controls many internal organs and his stress responses). He has also been diagnosed with a syndrome called Opsoclonus Myoclonus Ataxia (OMA).  This causes his problems with coordination, walking, trembling, and causes rapid eye movements.  OMA is thought to be triggered solely by neuroblastomas.  We understand this to be his body's immune system producing antibodies to combat the cancer and these antibodies are attacking the nervous system function in his cerebellum.

Where is he now?  Max is currently in surgery, it is a complicated procedure because the tumor is surrounded by very important blood vessels and lies behind some of his organs, they will have to move several of his organs to remove the tumor (He will have quite the manly scar!).  They also hope to put a port in his chest so that he can begin receiving his chemo, meds, and labs through his port.  They are also hoping to do a bone marrow aspiration and biopsy if time allows to see if it has spread at all.

What next?  We will be waiting for pathology reports on the tumor (hopefully before the weekend), he will have a bone scan, spinal tap, MIBG scan and a number of other tests to determine if and where the cancer has spread, this will also help us with staging the cancer. Doctors are positive and hopeful that we have caught this soon and we will have a positive outcome.   Depending on what we decide with the trials, he will likely undergo 6 rounds of chemo, start on a high dose of prednisone to calm his immune system down and will have immunoglobulin transplants to try and flush out all the bad cells.  He will also be closely followed by a number of specialists, oncologists, neurologists, and physical and occupational therapists. 

What about Madison and Molly? – We are working with our primary pediatrician to eventually get them tested, there is not a lot of information on this condition but it can be genetic.  They both know something is wrong but are hanging in there and being well taken care of.

Can he function without his adrenal gland? Yes, he will still have his left one and it will compensate.

How rare is this?  It is an extremely rare condition, affecting as few as 1 in 10,000,000 people per year. It affects 2 to 3% of children with a neuroblastoma.

How long will we be in the hospital?  Max may be in ICU tonight until they can remove his breathing tube and then in the normal hospital until early next week.  After he is out of ICU and this lovely weather calms down Max and the family would love to have visitors.

How can you help? Prayer.  We have a lot of important decisions to make soon.  His condition is really rare and Children’s Hospital hasn’t had a patient like Max before so they are very anxious to get him into some clinical trials, we are prayerfully considering this and have a lot of research to do.

How are we holding up? Amazingly well (says Kari, freaking out says Josh).  We know this is all very scary stuff. We are very overwhelmed with all of the medical information that we have been receiving and research we have to do, but we have both been functioning well on limited sleep, have been focused enough to ask important questions, and are trying to be the best advocate for Max’s care.

Our cell phones don’t work in the hospital, but somehow we can get text messages and emails without a problem, don’t hesitate to leave messages or emails and we can get back to you. Please feel free to pass these details on to others that are interested that we may have missed. Thanks for all the prayers!!

Josh and Kari