Sometimes there are very few words to really express how one feels. Yesterday we had a conference call with the doctors at CHOP. Addie had a biopsy taken last week. The biopsy results indicated that Addie has Angiosarcoma – which is a cancer of the inner lining of blood vessels. The most widely known cause of Angiosarcoma is lymphedema, the swelling of an area of the body due to the collection of fluid. It can also occur due to radiation exposure or treatment, but normally does not show up until years after the radiation treatment. Addie’s case of angiosarcoma has been aggressive and was visible in her left back/shoulder area as well as in her left leg. The biopsy also showed that Addie’s bone marrow is also diseased – they could do further testing to try to find out what is going on with the bone marrow, but feel like it is unnecessary at this time to put Addie through anymore procedures. They feel that Addie’s current medical situation is incurable, and our time with Addie is limited. They recommend, and we fully agree that we need to bring her home.
I spoke with Addie and Ryan after Ryan was able to discuss with Addie her situation. He said she cried hard for about a minute – and then they were able to talk about what the next couple of weeks, and maybe months may look like.
They have put Addie on new chemotherapy medications. They will not stop the cancer, but they may help prolong Addie’s life without making things unbearable. The cancer is separate from Gorham’s disease but very likely occurred because of the stress Addie’s body was undergoing with Gorham’s disease. I will keep you posted on when Addie will be coming to Missoula, and how she is doing. Love to all – I tremble with being the bearer of this news but feel so humbled, grateful and in awe that I was allowed this opportunity to be part of Addie’s life, Michal