Dragonslayer

I am going to try to go over all of the major points and there are so many so I hope that I don't miss any. Yesterday Spence had his Broviac double lumen port put into his subclavian vein. He also had a bone marrow aspirate to found out stage and to make sure that it is not in the marrow. We then met with the oncologists, Dr. Verma and Dr. Fluchel. Dr. Verma I think is from India and a little hard to understand but she is very intelligent. She explained the treatment plan very well and in a non overwhelming kind of way. Dr. Fluchel is pretty young. He is very nice and has a nice bedside manner. I think we may be working with him pretty often. Verma let us know that his tumor is considered high risk because of the location. It is not operable because of all of the muscle and cranial nerves surrounding it. It is eroding the bone of the skull and pressing up against the meninges of the brain, more specifically the dura mater, which, fortunately is the toughest most fibrous meninge (men-in-jee) layer, protecting the brain. The preliminary bone marrow results were negative for any cancerous cells (yay) and hopefully all tests show the same result. Because he is high risk they are putting him on the highest form of treatment as determined by COG (Children's Oncology Group). COG is an international research goup that conducts clinical trials for children with cancer. More than 200 hospitals in North America, Australia, New Zealand, and Europe are members of COG. Primary Children's Hospital is included with these hospitals. He will begin a FIFTY FOUR week treatment program including chemotherapy and radiation starting on Tuesday! Most of the treatment will be outpatient but there will be times that we need to be inpatient. Next week we will be inpatient. I kind of asked if we could be because Spencer has already lost 3 lbs since his biopsy last week and I am worried about his dehydrated, malnourished little body. Dr. Fluchel agreed and thought it would be best to get him together with one of the dietician and pump his body with nutrition. He will have chemo next week Tuesday through Saturday and then start up again for the next 5 weeks. He will be receiving Vincristine and Irinotecan these weeks. Week 6 they will evaluate the tumor and see how well it is reacting to the chemo. Week 7 will begin his "hardcore" chemo. These will make his hair fall out. We are going to have a hair shaving party that week for him. We have so many male friends and family who will partake in this! He will begin receiving Doxorubicin, Cyclophosphamide, and Etoposide along with the Vincristine and the Irinotecan in weeks 7, 8, and 9. Week 10 is an off week and evaluation. Weeks 11-13 are about the same as 7-9. Week 14 is an off week and evaluation. It will go like that for 15-17 off 18 eval 19 and then radiation begins week 21 to 23 along with Vincristine and Irinotecan. 25 is an off week. The schedule is about the same as the normal weeks until about week 35 where Dactinomycin is introduced into the schedule. Week 36 is an off week and then treatment tapers off a bit and gets less and less each week. It is a crazy schedule. A crazy road but I so relieved that we are moving in a forward motion.