Test Results

We had a nice meeting with our oncologist on Monday to discuss all the results of our recent tests.  She was very pleased with everything she saw.  Max's disease can be very complicated and even after a year of research we are still very overwhelmed by it all.  I am going to try to simplify, but feel free to ask me if it gets too complicated and you have additional questions or the following doesn't make sense:

We have two issues being evaluated - Neuroblastoma (malignant cancer) and his OMS (neurologic autoimmune disease)

1. Neuroblastoma Cancer - From a cancer perspective there wasn't anything to be concerned about. No malignancies or abnormal cells were found in any areas. We will continue to do another scan in 3 months to watch a couple areas and then possibly extend it to 6 months if everything remains the same. Praise God! We are very excited for this news!!

2. Opsoclonus-Myoclonus-Ataxia Syndrome (OMS) - When Max was diagnosed a year ago he tested at a 7-8 on a scale of 10 for the severity of his disease as evaluated by the clinical trial criteria.  He has slowly and steadily received better scores at each checkpoint along the way.  Now that we are approaching the end of the study he is now a 4 on the same scale, which is excellent, we are also very excited that he has made so much progress, however this is still considered a partial response.  Max's doctors were all in agreement today that perhaps now is the time to pusue other treatment options to see if we can try to get a complete response from him.  The problem is now that we are at the end of the study and we don't have many doctors in Seattle who are experienced with coming up with treatment protocols for kids at this stage.  

What next?  So...  we will be traveling to Boston Children's Hospital (Nations's #1 Pediatric Hospital) in the next few weeks to see a Harvard Neuro-immunologist who is having some success in treating children like Max.   There seem to be three other treatment options to consider -  more agressive type of chemotherapy to kill the remaining antibodies (not for cancer),  different types and schedules of steroids, and additional infusion options.

Many have commented on how well he looks and why not sit and wait and see if he gets even better - the problem with this disease is that with even the slightest lingering symptoms may mean he may still have antibodies that may be silently attacking his brain which can cause irreversible brain damage.  The good news is that he isn't showing any deficits in his development at this point which is a really good sign.

We still have some instability and trouble with balance at times, lingering tremors, and sleep and behavior disturbances that causes us to be very cautious, we were referrred to a be apart of a sleep study done in the next month to rule out any other issues that might be causing his sleep disturbances. Many kids like Max use sleep medication and we just don't feel very comfortable medicating him at this point without ruling out everything else and we would hate to mask any symptoms that might clue us in to there being a problem with a build up of those attacking antibodies.

Thank you for all your thoughts and prayers over the last week, we have all had an amazing sense of peace anticipating God to bless us as he has done all year.   We would love your continued prayers for all the pieces to come together so that the planning for the trip and gathering all the records would go smoothly and that we would have a peace about Max's next treatment plan. 

We would also love prayer for all the pieces to come together for our new health insurance. New health insurance you ask?  Yes, we found out the day before Thanksgiving that our health insurance was changing effective December 1st . As you can imagine there is a lot to coordinate when we have such a multi-disciplinary approach to Max's care.  Since we don't have a lot of options at this point we are trying to get all of his current care and doctors covered which has proven to be pretty difficult we also have a few services being reviewed by the insurance company's medical director in order to gain coverage, again the problem is that we are up against an extremely rare condition that has no standard of care so there are no policies over what is and isn't covered for a kid like Max.  We are just trusting that the Lord will work it all out, because other than lots of arguing and a little yelling there isn't much we can do.  =)

Thanks for keeping up with us, hopefully we will have more news soon.