Wednesday, July 30th, 2008

Wednesday, July 30th, 2008 - Matttie had a good day although we had to start him on Morphine for pain in his arm. The Morphine is working and Mattie appears to be experiencing less discomfort. The day consisted of hanging around the house, playing in the sand box, and trip to Roosevelt Island to drive his remote controlled boat, building a fort in the living room, trips to see JJ the Jack Russell Terrier and watching some Scooby-Doo upstairs.

Vicki and Pete spent the day making and fielding phone calls from a variety of people: Jennifer, our Nurse Manager, (coordinating his remaining tests), Kathy, his Nurse practitioner (regarding scripts for medicine and tests), Jeff, his Oncologist (regarding pain, plans for our pending discussions), Denise, our Social Worker (for resources) and a variety of other seemingly small details that added up to a lot.

We also received some flowers, a balloon with a teddy bear, a care package of things for each of us and some toys and puzzles, all of which were greatly appreciated and served as a reminder that we are blessed with family and friends who are thinking about us.

Thanks to a good friend, Grace Putnam, we got connected by phone last night to Allison Portnoy, the mother of William, who had osteosarcoma as well, and who went through the whole treatment process that we are presently dealing with. Allison took a significant amount of time last night to share with Vicki her experiences, facts, opinions and lessons learned from going through this ordeal with her son. We're glad to say that William completed his chemo over a year ago and surgery to remove the bone tumor, and is returning back to the normal activities of a ten year old. It gives us hope. Thank you Allison!

Thanks again to Bob and Ann Henshaw, who took time out last night at 10:30pm to talk us through a series of questions, doubts and fears about Mattie's treatment. Having friends like this is not only the best medicine but it makes each issue a little more manageable to deal with. Bob also sent along a site, CureSearch, that I will post to this blog under a links section that i am working on presently. For those of you curious in osteosarcoma, the site is filled with a lot of good information http://www.curesearch.org/for_parents_and_families/newlydiagnosed/. It is put together by the Children's Oncology Group (COG), which is an international organization composed of all the leading Doctors/Researchers in this field (several of Mattie's Docs are members of this distinguished group). We are building a list of contacts at the leading treatment facilities in the country specializing in pediatric oncology: Anderson in (TX), Childrens (DC), Lombardi (DC), Sloan-Kettering (NY), Dana Farber (MA), NIH (MD) and others so that we can get smarter and if needed, go see other professionals. Many thanks also to Team Kleinwaks, who continue to scour the Internet as another set of eyes/ears on this topic and collecting information for us.

Today, we are off to the Clinic to get a hearing test for Mattie, one of the baseline tests that Mattie will get before beginning chemo. The baselines are established for the major functions of the body and selected organs so that the doctors can track the impact of the chemo on him. We will then leave Mattie with the Art Therapists, Jenny and Jessie, and sit with Dr. Jeff to begin discussions about his treatments.

Tomorrow will consist of a battery of tests for Mattie. He is getting a second CT Scan of the lungs (since the first one was not clear enough due to the anesthesiology and his lying flat), a Bone Scan (he'll get some Versed, an anti-anxiety medication to calm him down), an IV will be put in some that NUCs can administer the contrast agent for the scan, as well as an Echo cardiogram (part of the baseline tests). Since the staging tests are almost done, we are hopeful that Mattie can begin his chemo as early as next week.

Finally, we emailed out this blog to many family, friends and colleagues, and we have been getting dozens of emails, calls and offers of support. So to those who have been so kind with your well wishes, we thank you fromt he bottom of our hearts!