I swear, I am trying to separate my personal life from this blog. I have a boatload of books I read in July - and I can't wait to blog about them.
Right now, I'm sitting in my armchair watching my kid sleep. We got back from Dana Farber Cancer Institute in Boston about an hour ago and we're all pretty exhausted. If you didn't catch my last (somewhat ranty) post, I hinted at what we've been dealing with. I'm just going to briefly share a reader's digest version of the last month.
7/4 - kid notices weird bulge on hip
7/5 - bulge is bigger and weirder; we go to local ER; ultrasound shows a mass the size of an egg; follow up xray shows no other growths; meet with surgeon who says no biggie, let's give it a week; believes its a pocket of bloody tissue from a bad bruise; schedule appt in his office to re-examine & maybe remove
7/7 - back in ER; mass bigger & darker; CAT scan shows no significant change but they encourage us to try to see surgeon sooner
7/11 - surgery to remove growth in office; things go horribly wrong; removal almost causes kid to bleed out; thankfully dr is prepared tho he had a moment of panic; dr says should have been done in hospital, but feels nothing to worry about - thinks its a blood clot from ruptured blood vessel
7/18 - follow up with surgeon; they take me to private room & tell me kiddo has hemangioendothelioma, a rare malignant vascular tumor - so rare dr knows nothing about it; refers us to Dana Farber; says he doesn't think he got it all out; he's traumatized, so are we
(A week of chaos & emotional upheaval ensues.)
7/25 - meet with dr at Dana Farber; says it IS an extremely rare vascular tumor but its benign; it is so rare that there are only 30 cases worldwide that have been recorded since 1990; there is no name for it & only anectdotal information available; schedules us to meet with surgeon
8/2 (today) - we met with surgeon who repeats what first doc said; adds that it can come back locally if not completely removed; schedules MRI for tomorrow; next week kiddo has Freshman Summer Institute for college; the following Mon will meet with anesthesiologist; surgery to go back in and make sure its all out scheduled that week so he has time to heal before college starts 9/2.
As you can guess from that, its been a traumatic month. We went from the high of kiddo going off to live at college, to preparing ourselves for the reality of him dying within the next few years, to discovering he's going to live but preparing for more surgery and regular follow ups for the rest of his life and back to him going away to college.
Books have been my refuge through this, they've been my buffer from the real world which has been at times too much to bear. But we're here, we're functioning and kiddo is going to live! We're taking that and running with it.
My next post will be about nothing but books. Promise.
Karen
