Monday, August 4th, 2008

Monday, August 4th, 2008 - We write this from the Pediatric Intensive Care Unit as this is where all Oncology patients stay when they are "in-patient" at the hospital. Mattie had a very long and hard day today, starting first with an IV in the Clinic and then followed by a PET/CT scan, which unfortunately, we were not able to do. Mattie was very traumatized by the IV experience and by his growing awareness and knowledge that something is very wrong with him and that he is going to be spending a lot of time in hospitals. As a result of getting five IVs in the last seven days, the tests and scary machinery, we could not get Mattie to get on the PET/CT scanner table today, and had to lose the testing window.

After that ordeal, we then moved immediately down to Pediatric Day Surgery to check Mattie into Pre-Op, for his double line brouviac insertion (this is the central line). The central line has been nicknamed "sparky" and allows the administration of medications without the need to stick him with an IV each time. The tube exits his skin about mid-way in the center of his chest and the rest of the tubing snakes upwards and enters a central vein in the neck that dumps into the bloodstream just before the heart. The surgery went well and Mattie is recovering well from the procedure. Albeit disconcerting to see tubing extending and hanging unnaturally from your child's chest, I know it is best for him as it will avoid him needing to get stuck every time, and there is going to be a tremendous amount of sticking across the next year.

A piece of bad news was also given to us today as well. Apparently, the bone scan performed on Friday also picked up on some suspect areas in his distil right femur (just about the right knee) as well as the right ischium (inside, lower part of the pelvis). A PET Scan will determine if these areas are suspicious or not, which has been scheduled for Wednesday at 1:00pm (Mattie will get sedation for this scan to ensure it happens). If the areas are suspicious then biopses will likely be needed. Again, the PET Scan will help confirm this and during the PET Scan, they will take CT Scans of all his bones (so no more x-rays will be needed). Best case is these areas turn out to be nothing, at which point we will go back to focusing on just the two arms.

Also today, the Tumor Board held a session, and although we do not attend these meetings, we understand that a group of leading Pediatric Oncology Doctors all get together and have a meeting to review specific cancer cases. Today, only Mattie's case was presented given that his osteosarcoma is very rare when seen in six year-olds and given that it is metastatic synchronous osteosarcoma of the Humeri (meaning the cancer is showing up in the exact same location in the same bone on each side of the body. Several of the Doctors involved directly in his case presented and input, comment and advice was provided. One thing was for certain: everyone agreed that the standard protocol for chemo is the right one knowing what we know now and that we should get going on it. This group will continue to regularly meet and discuss Mattie's case, and both Dr. Toretsky and Dr. Henshaw will continue to reach out to their vast network of experts in their respective areas and will seek most appropriate and effective path to get Mattie well once again.

So, chemotherapy will not start tomorrow but will likely start on Thursday, which represents only a two day lost in time, since the PET scan needs to occur before the chemo begins. Although we have not fully digested nor understand what chemo will entail (i.e. side-affects, issues, etc.), we are trying to prepare ourselves for what will conclusively be a horrible experience. Mattie has been a real trooper through the pain of the last 13 days, but it is starting to get to him. Yesterday, we noticed that Mattie really had started internalizing his situation as he began to get very scared and anxious. We are doing all that we can to address this but unfortunately we do not have the luxury of time on our side, and so we must be quick and precise about the circumstances.

So tomorrow we will work on getting Mattie recovered from the surgery. His incisions will begin to hurt more and we will be trained on how to change his dressings (as we will do this once a week when not in the hospital), change the caps/lids on Sparky and clean Sparky once a day with a three mL shot of Heparin (to prevent the tubes from clotting up and clogging).

Mattie's hospital room is C5205 but we will be moving to another room tomorrow. The room is tiny and between the furniture and hospital bed there is not much room for any other things. Ann Henshaw also visited us tonight and brought over an armload of just some of the things that friends have been giving to her to give to us, so thank you all for your warm greetings and kind hearts.

I think to most unsettling point right now is that we just do not know yet what the full parameters of the situation are and where the cancer exists/has spread to. The faster we can get to that the more we can focus on the other unsettling points like the chemo schedule and surgical options. We will keep you posted on our events this week but we will likely be here through the weekend.