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Raggedy Whrrled

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사회주의적생활양식에 맞게 머리단장을 하자 !

사회주의적 생활양식에 맞게 머리단장을 잘하자

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Tannsi Report | 01/20/2024 5:50 pm
Tannsi
Glad to hear you're feeling better! heart Hope the brain fog has eased though. Brain fog is so frustrating.
Tannsi Report | 01/12/2024 10:02 pm
Tannsi
<3 It means the world for sure. So many lives are saved. Ugh lol I get so emotional even just thinking about it. Literally alive because of strangers and selfless donors.
Hope you're feeling better and that the crud has recceeded!
Tannsi Report | 01/10/2024 1:24 pm
Tannsi
Thank you so so much for being a blood donor <3 The other day they were looking through his records because he needed blood and platelets again and they told him he was over 1000 transfusions (blood and platelets combined) since he got his first platelet transfusion in April 2007). All my kids (except my stilborn son) and myself have received blood so the importance of blood donation is so close to my heart. American Red Cross just announced yesterday that they're at a critically low shortage right now and I made a post on Facebook encouraging anyone who is able to consider donating because it's so lifesaving. I hope you're able to soon and feel better soon. I've heard that the flu is so bad right now. When we were at the emergency room a few days ago, they had a separate triage area for suspected flu, RSV, pneumonia, COVID, etc., because they're so bad. RSV has hit several daycares and led to them being closed. I know several friends of mine have had their kids admitted to the hospital for pneumonia and RSV, and it was eye opening to me just how dangerous these strains are now because if it's putting healthy, low-risks kids in the hospital, I have to be extra careful with my two kiddos (and James, ha).
Yeah, it's been so stressful. He says the side effects aren't too bad compared to before, more inconvenient. His biggest problem is he's on seizure medication and he's not allowed to drive. That might honestly be the thing that drive him bonkers the most. The other day he tried to go to work and the principal sent him home and covered the rest of his classes. Uber doesn't run in our rural neck of the woods, so he had to wait for me, and of course, I was in the barn with the horses and didn't get the text until about 40 minutes later. 🙃😬. They have told him when he's done with radiation, he they can start weaning off the seizure meds, and then if he's seizure free for I think two weeks, he'll be able to drive. So we're looking mid-February!
Hope you're feeling better today. <3
Tannsi Report | 01/09/2024 11:57 pm
Tannsi
Aw man,I really hope you feel better soon! So many things are going around up here, but luckily we've managed to avoid the heavy stuff so far. We were all sniffling at the beginning of the new year, but luckily nothing major manifested.
He had surgery October 11 to remove what they could of the tumor, and luckily the doc was able to get 97%. Recovery went well, and his vision is okay. He still deals with shooting pain in his right arm, wrist, and fingers, which is originally what tipped him off that something was happening. His vision being off he just chalked up to his sugars being better controlled making his contacts and glasses prescription outdated. Currently he's doing radiation 5x a week and he's on his 30th appointment today out of 45. Then he's on two different types of chemo, temodar and Velcade. Temodar is an oral chemo that he takes every day with no breaks, and Velcade is an injection on Mondays and Thursdays that's apart of a clinical trial. And then they also have him on avastin to "starve" the tumor as the doctor said. Surprisingly the pathology came back as non-malignant, but considering the rapid growth rate, and the fact that he had PLTD (post transplant lymphoproliferative disorder, or essentially lymphoma. His bone marrow donor has the epstein barr virus and when he was transplanted, the virus just took over a nice colony over a dozen lymph nodes and also in his brain) the doctor didn't feel comfortable just letting what was left sit like what happened previously. Original tumor was removed in 2021, and it was slow growing and he dealt with for over a year. (COVID had a lot to do with that delay.) If he had followed up with radiation then, chances are this wouldn't have happened. The doctor was pretty sure that it'd grow again, not sure when, but was confident James was a perfect candidate for gamma knife when it his start growing yet here we are, the thing grew so much in mere months. What's really scary about all this is that Temodar is known for causing bone marrow issues, and since James had a bone marrow transplant 10 years ago... they're keeping a very close eye on him and he's already had a couple incidents where his platelets were very low and he needed both platelets and whole blood. Soon he will be able to go off that medication though, and instead of daily, he will take double the dose 5 days straight, and then be off for 25 days. That schedule will follow for a year or so as long as he tolerates it okay and he doesn't have any tricky issues with bone marrow failure. The side effects are too bad (he says he's definitely felt worse which is kind of amazing considering all the meds he is currently taking) but more inconvenient, like mucositis/mouth sores, falling blood counts that just remind us when he was at his sickest, so a whole mental aspect on top of it, and being super tired, because he's still working throughout all this. His students have been gems!
I guess in the grand scheme of things we're lucky (although we really don't feel that lucky), because in the beginning the doctor didn't fill us up with confidence at all and bluntly told us to start getting our affairs in order and making final plans. We've been so unsettled since then. I guess we won't know until repeat scans happen to make sure there's been no growth from now October 11 until the end of January (when radiation is hopefully complete) and then at the next follow up scan two months post radiation, when the majority of treatment has ceased. All of it has us on pins and needles for sure.
Tannsi Report | 01/07/2024 11:33 pm
Tannsi
Thank you, I really hope so.
Everything I was afraid of happening happened in the last 12-13 months. I just hoping it really can't get worse.
Hope you're doing well.
bit390 Report | 11/17/2023 11:01 pm
bit390

Hi raggedy;


One day late, I just want to wish you; Happy Birthday !!

I really hope you enjoy the day and the cake,
I wish you the best and years of good health !!
Tannsi Report | 11/10/2023 8:10 pm
Tannsi
Lol, no, but thank you! My birthday is in June. But maybe you're thinking it is because November is a big month for our family? My husband and I eloped on November 5, his transplant anniversary is November 12, and our son was born November 28th. Lol. And then we throw Veteran's Day since we're both Veteran's and that's important to us, and then JD was in a bad car accident on November 13, 2020 and almost died, but didn't, so that's an important day for us. November is a busy month filled with fun things to celebrate. This year we're celebrating Brie having her SDR surgery, which will greatly improve her life. The only downside is James will start chemo probably towards the end of the month, but I guess the positive side to that would be at least we can celebrate we've got those options. smile
Hope your day is filled with lots of fun and greatness! <3
Tannsi Report | 11/10/2023 7:00 pm
Tannsi
Happy early birthday!
OH MY GOOOOOOOOOOOOOOOOOD Report | 11/05/2023 5:04 pm
OH MY GOOOOOOOOOOOOOOOOOD
Thank you , I love your alien look! Super fun whee
bit390 Report | 09/24/2023 11:08 pm
bit390

Hi raggedy

Pehaps this is a bit unusual, let me put here the way how to @ in gaia forums;
(I leave here for a fast reference/location )



[quote="username-1"]-[/quote]

[quote="username-2"]-[/quote]

message here



biggrin
 

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