Sunday, August 3rd, 2008

Sunday, August 3rd, 2008 - Tomorrow, Monday, we have to report to the clinic by 9:00am, based on a call we got tonight from Dr. Jeff. They want to do a PET Scan, which uses a radioisotope (different than the one used for the bones scan) to identify high metabolic areas. The PET scan is a complement to the CT Scan, Bone Scan, MRI and X-rays that have been done to date, as it focuses on additional areas. They are doing this only to rule out anything else and to be completely sure the cancer has not metastasized elsewhere, since we have been very surprised by Mattie's situation to date.

The doctors Jeff T., Bob H. and Allison Lax (Radiologist), have been fast-tracking (and bending over backwards to accommodate) Mattie and prioritizing him over other patients to get him to the front of the line for these tests. We are very grateful that we can get moved to the front of the lines in spite of the situation. In the afternoon Mattie will have general anesthesia and a surgery to get the central line implanted. We talked Mattie through this today and he understood the benefit of not getting stuck each time with a needle. Once installed, the line will be where all injections are made thereby eliminating the need to get stuck by the nurses of worse, by Pete and Vicki at home) We both know tomorrow will be rough, but we will get through it as we have to.

Dr. Jeff, Bob and others have been working their networks since Friday and over the weekend to reach anyone and everyone who might have a meaningful contribution or option about Mattie's situation. Remarkably, we are struggling to find another documented case of metastatic synchronous osteosarcoma affecting the humeri (both upper arm bones). Mattie could conceivably be the first documented case. Just our luck.

On a lighter note, Mattie had a great weekend. We got a call form Julie Frye on Saturday morning who (bless her heart) had been working with Ann, Margaret and Grace to come up with a variety of offerings to support us this weekend. We settled on Pete and Mattie going to spend time with Julie's husband, Rob, and Vicki going with Julie to Grace's house where Ann and Margaret were waiting. Needless to say, Mattie spent the afternoon fooling around with Alex (Rob and Julie's son) and doing six year-old things (forts, throwing stuffed animals down the staircase, swimming, watching speed racer, etc.), while Vicki had a great time socializing with her friends and attempting to be a normal person for a few hours. We ended the evening with dinner at a Mexican restaurant with the Fryes and having a wonderful and remarkably "normal" day. So many thanks to Julie, Rob, Ann, Grace and Margaret for making Saturday a good day.

Additionally, we were thankful for a good Sunday. After tooling around in the morning, Mattie and Pete went to meet JP and JJ (dog) at the park for a long walk that took us down Donaldson Run and in and out of brooks and interactions with lots of other big dogs (JJ apparently has no concept that he is any smaller than any other dog). Afterwards, Mattie and Pete hit the drive-thru for some large vanilla shakes and then went on to Home Deport (no summer weekend would be complete without a trip to Home Depot). While Vicki hit Target with a vengeance (getting a list of things too long to mention here but all related to our expected hospital stay this week, and of course Mattie, when Mattie starts getting chemo), Mattie and Pete planted the two pine tree that Frances (a friendly neighbor in the complex) gave to us for our collection. By the way, our planting activities included play time in the sandbox, water fights with the hose and of course periodic visits with JJ.

Meanwhile, we continue to have very dedicated friends researching clinical trials, searching for doctors and contacts (Thanks to Logan Kleinwaks!), making lists of research studies and papers, arranging schedules for mental health breaks, formulating meal plans, fielding information requests, planning activities for Mattie, sending gifts to Mattie and us, and distributing emails to spread the word about Mattie's situation. We got a call on Saturday from Joan Holden, Head of School for St. Stephens and St. Agnes, essentially offering us the resources of the St. Stephens and of course blessings, to help Mattie.

Also, we received over the weekend over a half dozen gifts including puzzles, games, toys, books, balloons and stuffed animals (several of which were Jack Russell Terriers, so it's clear several people are reading the blog), not to mention a lot of cards with warm messages, statements of love and support, and of course blessings. We cannot thank you enough for these actions and selfless declarations of love, as they really keep us from going to tears and falling apart every other minute. A special thanks to you who made us smile this weekend with your thoughtfulness and caring. Mattie has not been this surprised or excited since his birthday, so for a six year-old that's saying something.

Our family support has been needless to say amazing. We are presently planning trips for each of the grandmothers as well as Pete's sister-in-law/brother, Vicki's childhood friend from Manhattan (Karen) and several others who at a moment's notice are ready to get on a plane/train/automobile to get here if we need them. Although corny sounding, I am truly amazed by the dedication and support people have for us. Truly amazed.

Also, I want to thank all of those who have blogged us and left such wonderful comments and statements of support, not to mention all those who have emailed us with caring comments. From fast-made friends who share common ailments/histories, to long lost acquaintances and special friends, we thank you all for what you have done and for reaching out to us in our most dire time of need.

Although twelve days ago, we were the parents of a healthy, six year-old boy, we begin tomorrow instead, the parents of a six year-old son who has a vary rare occurrence of bone cancer and who is starting out on a very long road of chemotherapy and surgery.