I just typed a far far too long and disjointed entry.

To save on time, I will be brief today. Should you want more details on any of it, pleas ask... Questions are always good. Especially when the come from the '12 and under crowd! Either email, or just leave a comment with a ? and I'll explain whatever you want.

GggyjQuestions are totally encouraged, and I'll answer any questions as best I can. Please encourage the kids in the family to express their questions... All in all the questions from kids tend to be the best ones.
;66
Alright... Here's a timeline that will bring us to today:

July - 5 cycles of plasmaphereskis followed by the IV rituximab (chemo drugj) every week for a month.

August - two admissions for uti/kidney infection/urosepsis.

September - inpatient again for urosepsis. At this point I was seeing benefits of the rituximab, and I was eating almost totally by mouth. The tunneled line was pulled before we got word on the cultures.

October was lovely. No TPN, no central line... It was a glorious month!

November was the start of the spiral. By late November I was losing weight , dizzy, my heart was a mess, I wasn't eating and more often than not I felt pretty crappy.

December was spent getting a new central line (I have a port a cath), starting the new drug, and getting a few cycles of IVIG. First cycle landed me inpatient for a weekend due to aseptic meningitis.

This past week has been a bad one. Too many bad days and far too few tolerable ones, never mind 'nice' days.

I chose today to postpone the next IVIG dose, as I've had a very sick week and needed a break.

A huge thank you to everyone, for the moral support, physical supports (my laundry gets taken care of)' and financial supports (6 months of no work after he got let go for missing too msuch work on account of what's going on, combined with the tremendous drop in income when he finally found work that allowed the flexibility we require... Add in the thousands of dollars we pay for insurance, meds, travel, parking, gas money, missed work to care for me on bad days throughout the year... It's been a challenge as the life we had was based on twice the income.
I'm reminding myself that I'm here, at home, with my family and that should be more than enough... But when we are constantly reminded that any attept to get ahead financially is usually tossed out the window (we spent two years pouring money into our adoption account. We managed to save up over four grand. In one swoop it was all gone, between insurance co pays (it's great that my wheelchair is 80% covered but that still leaves nearly a grand from us) and life in general.


Just a grumble... I always knew it was expensive stuff being sick, but I had no idea. At this point we have about $20,000 worth of equipment for Brandon and I waiting to be ordered (power assist wheels for my chair, a new chair for brandon, basic supplies for tube feeding, and a host of smaller things we have on that list) because we don't have the money or time to organize the orders.

Just sharing the realities most families like ours are faced with...


Well enough of me babbling. I'll try harder to update a bit more often.


Please pass this link to anyone else you think might want to stay updated.

K

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