Honestly it has been refreshing not needed to document all of the chaos that has become our lives over these past four years, and I am happy to say that other than some recent issues things have been well. Yet here I am four months since my last post writing these words. Maybe it is due to all the boring and self indulging blogs that are out there in the internet world just begging for readers and likes. Maybe I am one of those desperate writers. Maybe you all miss the joy and tears I bring. Maybe I am just an over confident windbag (well that’s actually pretty accurate). Maybe it is none of the above.
Truth is that we have been gearing up for our second annual Swings for Julie golf tournament and that process has created some awareness that not everyone who has who has followed our progress all of this time really has any idea what we are up to these days. Also some of the people I am soliciting for help with donations and partnership have recommended that I open my big mouth again and feed all you baby birds out there. Well here are your worms.
January: I brought the flu home. Bad flu. Flu that lasted like literally four weeks in the house. Vomiting, missing school, other things associated with the flu, never ending coughing throughout the night, etc. I brought that home. In hindsight I should have gotten a flu shot, which I did, in February, after the damage was done, AND for the first time since I was in the Marine Corps 14yrs ago. Bad Max. So of course this attacked Julie the worst, causing increased doctor visits, added doctors, pinkeye, overpriced inhalers, sleepless nights, and so on. You get the picture, I screwed up. Anyhoozle that was a large set back but all in all did not create any major problems, oh well there was actually an emergency room visit due to fever but it didn’t last over night. Hard to remember now. Of course the 12 different bills that arrive from that visit are a friendly reminder. I think I am off track……..
February: See above. Later in the month things seemed to get back to normal.
Julie has been active and getting stronger since her return. Coffee dates, walks, dog walks, taking girls to school. Life has been normal. Somehow we adopted another cat. We do things, normal people things. The kids are super happy. Stuff.
March: Julie started to seem to be getting “sick”. Not the flu, not like we get sick, but Julie sick, weird sick. She started being a little more tired, her eyes bothered her, itchy, puffy, red. We thought maybe pinkeye again and used some drops. That didn’t work and other things started appearing. Her head became very itchy, then she started to develop hives on her face, then everywhere, then her eyes started getting worse. Like I said, weird sick. She did some Google nursing, emailed Forman about the possibility of having allergies now with the new immune system, saw Frakes, nothing seemed to click. After about a week of the issue being full blown we kind of thought it must be GvH (graft vs. host), her immune system not playing nice. She is the host, the immune system was graft from the donor stem cells. This was a scary thought and a little depressing for Julie as all of our previous experiences with any adverse conditions meant hospital stays, probes, tests, removal of organs, bad things. So that was/is going on.
Yesterday, Monday 3.31, Julie had a scheduled appointment with Dr. Forman at which point she was quickly diagnosed with GvH. Thankfully this is not crazy unheard of nor that uncommon during the initial year after transplant. Julie had been tapering off drugs and immune suppressants and this kind of happened. So they reassigned some new drugs to squash the issue and they go back to monitoring closely. Frakes for IVIG Friday, back to COH on Monday, busy, monitored, drugs. As of today she is unfortunately not seeing much relief, she actually had to get in and see her eye doctor as her eyes burn constantly and she is unable to open them or see more than a few feet in front of her. The eye lady scrapped some membrane off of her eye and said under her eyelid/s is scratched. The doc prescribed some additional drops and contacts that will hopefully help with that. The goal is to have a substantial amount of relief by tomorrow or Thursday at the latest.
So that is where we stand now. Pretty crappy hiccup but just part of the process of accepting a new immune system. It’s not cancer and that’s cool.
Now if you are still reading consider this next part like an add on Facebook.
If you would like to get involved with the golf tournament we are doing it Tuesday 4/29. There is room for players, hole sponsors, and prizes for the event are greatly appreciated. This year we are giving the money back to Dr. Forman’s department at the City of Hope to help them continue to save lives and families as they have done for ours. We are truly grateful for him and his team as we are for all of you. www.swingsforjulie.eventbrite.com
I hope you feel more informed.