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KirisMum · 07-03-2014, 06:43 PM

Thank you, all, for your love and support; it helps enormously to feel not so alone in this. There are so few people in my daily life I feel can really "get it" and I'm determined not to burden Kiri with my fears.

The happy news is that following this most recent diagnosis, she and her wonderful boyfriend decided that "owing to the gravity of the situation," as he put it to my husband, they would get married, sooner rather than later. And they did! Last Friday, in a simple but beautiful civil ceremony. To be followed in October, God willing she is well enough, with a large traditional second wedding with all the trimmings. It all sounds and feels a bit bizarre but is certainly a very effective distraction. I find myself sometimes thinking, as my head spins, I have a child with a terminal prognosis and now TWO weddings to handle -- where does this rank on the stress level scale?!?

Kiri is now very busy with interviewing DJ's and photographers and caterers and not in the least bit interested in cancer, upcoming scans, or her prognosis. For this I am supremely grateful and blessed. But it doesn't stop my own incessant worries and fears. I can find so little on predictions for positive response of brain mets to chemo following progression after WBR. And of course there's virtually no info on ARRY-380 since it is, after all, still just a Phase 1 trial. Why do some bc brain mets progress after WBR and others not? Does the fact that she has multiple new mets that appear to be fast growing indicate a poorer prognosis? Who knows if any treatment can put the brakes on them. Her first scans are 5 weeks away and that feels like forever, but I will be terrified waiting for the results. I wish I could just relax and enjoy these precious months when she is happy and excited and feeling well. She is so beautiful and her new husband is so brave and sweet and caring. It breaks my heart.

07-03-2014, 06:43 PM	#11
KirisMum Senior Member Join Date: Nov 2010 Posts: 186	Re: Well this sucks Thank you, all, for your love and support; it helps enormously to feel not so alone in this. There are so few people in my daily life I feel can really "get it" and I'm determined not to burden Kiri with my fears. The happy news is that following this most recent diagnosis, she and her wonderful boyfriend decided that "owing to the gravity of the situation," as he put it to my husband, they would get married, sooner rather than later. And they did! Last Friday, in a simple but beautiful civil ceremony. To be followed in October, God willing she is well enough, with a large traditional second wedding with all the trimmings. It all sounds and feels a bit bizarre but is certainly a very effective distraction. I find myself sometimes thinking, as my head spins, I have a child with a terminal prognosis and now TWO weddings to handle -- where does this rank on the stress level scale?!? Kiri is now very busy with interviewing DJ's and photographers and caterers and not in the least bit interested in cancer, upcoming scans, or her prognosis. For this I am supremely grateful and blessed. But it doesn't stop my own incessant worries and fears. I can find so little on predictions for positive response of brain mets to chemo following progression after WBR. And of course there's virtually no info on ARRY-380 since it is, after all, still just a Phase 1 trial. Why do some bc brain mets progress after WBR and others not? Does the fact that she has multiple new mets that appear to be fast growing indicate a poorer prognosis? Who knows if any treatment can put the brakes on them. Her first scans are 5 weeks away and that feels like forever, but I will be terrified waiting for the results. I wish I could just relax and enjoy these precious months when she is happy and excited and feeling well. She is so beautiful and her new husband is so brave and sweet and caring. It breaks my heart.