Gravity

Today we went to Children's Hospital and met with Dr. Mascheranas. So many people have recommended him; and he was "all he was promised to be". We spent nearly an hour discussing Pleomorphic Rhabdomyosarcoma and Jon's treatment. He humbly asserted he was an expert. He had already looked at the pathology himself and talked to Dr. Helmsteder (the oncological surgeon at Kaiser who will be removing the tumor). Here is a summary of what we learned: 1)Jon must have the tumor removed before chemotherapy/radiation.(There had been discussion that chemotherapy would begin first using the tumor as a biological marker.) Dr. M recommended immediate surgery (resection) with wide margins. This could happen as early as Friday October 26th. 2)There are two types of Pleomorphic Rhabdomyosarcoma. One type is strictly Pleomorphic. The other type is Aveolar/Embryonic with Pleomorphic "components". After the tumor is excised, the pathologists will determine the type. Both are "unfavorable", but the strictly Pleomorphic tumor can be "more resistant" to chemotherapy. 3)If Jon was 26, he could be treated at Children's Hospital. (He looks 26--that should count for something...) 4)Jon will start chemotherapy 1-2 weeks after surgery. Dr. M seemed to think one week would be sufficient. Dr. M recommended two different treatment protocols. One is standard for Rhabdo in kids (6 rounds every three weeks including radiation mid-treatment.) The other protocol has shown excellent prognosis in Ewing's sarcoma but is not "standard". It would mean chemo every two weeks for 6 months. If Jon could handle it, chemo every two weeks would help keep the cancer cells from recovering. As Caleb would say, it is like running a "constant Jedi blaster". 5)Getting it right the first time is paramount. If the cancer recurs, the prognosis goes "way way way way down". This was a memorable comment from a genius like Dr. M. 6) Dr. M recommended a chest catheter instead of a pic line. 7)Our family can stay together. Jon will receive chemo and then return home. If the kids are sick, he can wear a mask and washing hands will become an OCD tendency for all of us. Sick people will be warded off with Jedi blasters.... 8) As a third party, we asked Dr. M if he thought we would be better served at City of Hope (a local cancer center ranked top 25 in the nation). He objectively said "no". We have a great team collaborating to create an integrated treatment plan. Dr. M's voice at the table is a huge gift. Jon is an adult but he has a pediatric cancer. 9)Our kids will not inherit a genetic predisposition for Rhabdo. 10) Jon has many things in his favor. He caught the tumor early. If he were overweight and the tumor was hiding behind adipose tissue for months, this would be a different song. We are exhausted but so grateful for the love and support that surrounds us...We are on our knees in thanksgiving for our village. Jon met with a wise sage this morning and discussed the fear and feelings that are pressing in...Here is some wise concise wisdom worth sharing...very sobering...> *Say yes to pain medication *Say yes to light meds for anxiety during a procedure *Say yes to sleep medication when needed *Spend 10% of discussion time discussing mortality (but no more!) *Get all the rest you need *Work a flexible schedule throughout *Say yes when offered help for things you need *Find that person who knows most about your condition *Help Sarah get support