Friday, August 15th, 2008

Friday, August 15th, 2008 - It was another good day, at home. Mattie woke up at 7:15 this morning, and had only a little toast this morning. He spent the morning hours on the couch, watching some videos and taking it easy.

Early this afternoon Mattie's kindergarten art teacher, Debbie Pollak from SSSAS paid a special visit to Mattie since he missed her art camp this summer because of his illness. Debbie was so very sweet to come over on a Friday afternoon equipped with huge balloons, supplies, materials and a whole lot of love and energy. Mattie, Debbie, and Vicki made paper following an ancient Japanese method which was not only fun but educational. Between the paper

drying sessions, Debbie showed Mattie slides of her trip to Japan when she learned the paper making process. Mattie thoroughly enjoyed it and had a very good afternoon. Thank you Debbie for being you! Concurrent with Debbie's visit, we also had a visiting Nurse, Sharon, come over and walk us through the box of supplies and processes that we had already learned while Mattie was an in-patient at the PICU. We will continue to have supplies regularly delivered to us so that we may maintain Mattie's lines. Tonight, Vicki flushed both lines and did the Heparin flushes without incident. It's amazing to think that we're playing with a tube that is only inches away from Mattie heart, but those are the stakes we are dealing with these days.

Mattie had his regular Friday night pizza night, but it unfortunately took a turn for the worse. Mattie threw up his entire dinner and the snacks beforehand around 8:00pm tonight. After paging the on-call doc Dr. Myers (who returned our page in about 3 minutes) and discussing with him the situation, we all believe that Mattie's stomach has been so abused the last two weeks that we need to go slow and go small in terms of portions of food. Clearly, his stomach is not ready for regular eating behaviors even if his brain is saying he wants to eat normally. Strange thing that chemo...

So Mattie is in bed now as he is feeling tired. We are anticipating a downturn in his energy level starting this weekend as the Cisplatin (chemo drug) tends to have a 7-14 delayed effect on the body. His counts will drop, his energy level will drop and he will start feeling more miserable. Mattie will start losing all his hair by the middle/end of next week, so Mattie and I are going to see Melo, our Sicilian barber at the Watergate Barber Shop tomorrow to get a high and tight cut.

One note of clarification: I want to be clear with everyone that I started this blog as a means to disseminate information and as a form of therapy for myself, and although I write the majority of the posts, I do not work alone. As many of you know, Vicki, my better half, is the invisible hand behind much that I do and am. Vicki proof reads all that I write and regularly inserts lines herself. Like most great teams, we have no separation or preconceived plan regarding how we do things. The fact is that.... it just happens, and it is as simple as that, for those of you who know what I mean. When I am down, Vicki rises up and when she is down, I rise up instead. We never really talk about it but these qualities are something that few couples/partners ever spend time discussing or sharing for that matter. It's almost as if we have another means/medium of communication (as spooky and as whacko as that sounds). So, I want all to know that this is a collaborative effort, reflective of two people, not just one.

The positive news: so, just to preface this information, so that we all are clear the context with which we should read this information, but we do have some positive news. As the regular readers know, Mattie started chemo last Thursday. On Wednesday, six days after the chemo started, as the regular readers know, Mattie had a CT guided biopsy of his distal right femur (leg bone). We got a call from Dr. Jeff this afternoon, telling us the pathology was done and that he had the results. The bad/good news was that the area in the right leg was confirmed as an osteosarcoma tumor (which we had all suspected). But, the positive news was that the sample of cells taken were ALL dead, meaning that although there was the presence of osteosarcoma cells, the cells were all now dead after the first week of chemo. What this allows us to speculate is that the chemo has killed these cells. This also allows us to speculate that the chemo, at least at this local site, has been effective in killing the tumor cells...... Now, let's not get ahead of ourselves. This does not mean Mattie will be cured, but what this does mean is that at one site (leg), we are finding dead osteosarcoma cells only six days after chemo was administered..... so that's a good thing. Okay, now you can cautiously smile.

So let's keep our fingers crossed that more and more of these damn cancer cells continue dying. This will not impact the four surgeries that Mattie will have to undertake, but what it does imply is that we might have a fighting chance against this disease.