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.
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?
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. 
