Care Conference

We appreciate all the prayers for our big meeting on Tuesday.  It was extremely helpful to regroup with all the members of our multidisciplinary medical team.  There were 10 of us and 4 others who had submitted up to date reports and had representatives available to speak for them. Here are some key topics that were discussed:

* Evaluation Criteria - Max is progressing nicely with his treatments, it was agreed that he is not in full remission yet, but has had a partial response so far.  We are glad to hear this and hope to continue to have steady progress, doctors think that the response he has had so far will make his long term outcome favorable.

* Tapering Schedule - It is going to be very critical that we keep a close eye on Max the next couple months, we really need to get his dosage of steroids tapered down to a more manageable level to limit the long term effects that Max will have from the high doses of steroids, but it is a fine line because as we lower the dosage the neurological symptoms may crop back up and we have to do it slow enough to make sure we try to get his adrenal gland the chance to come back to life. We have the doctors word that we will listen to Max's body and go at the rate Max can handle instead of following the clinical trial's suggested schedule.

*Relapse - We discussed courses of treatment and what medications we will use when Max has relapses. He isn't out of the woods quite yet, it is going to take some time for his body and immune system to recover from chemotherapy and because of his autoimmune condition he will continue to be at risk to have a relapse with every cold, virus, and infection that he is exposed to.

*Chemo and Infusions - Max will receive his last dose of chemotherapy on his 2nd Birthday (April 25th). He will continue to have infusions at Children's Hospital for up to 2 -3 years, with the goal to be done with infusions in time for Max to go to school.  There will still be side effects of the infusions and it's hard to know at this point what they will be since he has been having them along with the chemo.

*Future Tests and Monitoring - Max will continue to be followed very regularly by all the disciplines he will have another CT scan next month and then will continue to have scans every 3 months to watch for the reoccurance of the neuroblastoma. He will also continue to have cognitive testing, neurosphychological testing, and testing to make sure he continues to stay age appropriate for all his developmental milestones. There are so many blessing to having twins and for me it is a daily blessing to be able to compare Max and Molly and the new skills they are both making. I think I would be a basket case always wondering if he was falling behind.

*Speech Therapy - He is making excellent progress relearning to speak.  He is beginning to link words together and combine signs and words. He still has ataxic dysarthria and apraxia (slurred speech and issues wtih motor control).  He is quickly learning words so we are going to up the amount of times he is seen by speech therapists to make sure we stay on top of all the new skills he is learning and to make sure we as parents can learn how to work with him at home to make sure he is correctly learning these skills.

*Occupational and Phyiscal Therapy - He is also excelling in his OT/PT, we will continue to be seen by therapists at Children's and in our home therapy to make sure Max stays above the curve in all his motor skills.  We are really focusing on his fine motor skills and we are all keeping a close eye on his tremors and developing strategies for managing the tremors. 

*Vaccinations - I have appointments for all 3 kids to get well-child checkups this month. We will need to hold off on Max getting any vaccines for the time being because of his current condition and immune system, and maybe even hold off on a few for Molly and Maddie.  We will put them on a new schedule to get them caught up in time for school.

We discussed progress in other areas including genetic testing and insurance issues. Max is such a sweetheart and sat through the care conference and said "thank you, bye-bye" to each medical professional individually. He is such a joy to work with and has such a positive attitude through it all, I love watching the smiles he brings to everyone he comes in contact with.