Gaia :: Profile Comments

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.

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!

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

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.

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.

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 !!

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

Report | 11/10/2023 7:00 pm

Tannsi

Happy early birthday!

Report | 11/05/2023 5:04 pm

OH MY GOOOOOOOOOOOOOOOOOD

Thank you , I love your alien look! Super fun whee

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

Report | 07/28/2023 10:58 pm

bit390

Hi raggedy grrl;

Indeed you have a fun shark costume 3nodding

We are almost inside of the Buccaneer Boardwalk, just the meeting
was outside of this place, I think the Alarmskeeter server have
some issues with the layers, since we pass the zone of the dev meeting,
just the meeting was in other layer and we are no able to see the shout talk
of Mavdoc.

I really wish that the whisper server can be fixed, this can be the solution
to found our friends in the area that are in other layer.

When was the last time you ate an smoresh cookie?

Report | 07/14/2023 7:41 pm

Tannsi

Love and hugs right back at you <3

Report | 06/03/2023 1:30 am

bit390

Hi Raggedy;

Do you think the item called Rosamund's Rage can fit the red head that you are looking for?

Report | 05/30/2023 12:19 am

bit390

I apologize for not being so clear with the question, sorry. sweatdrop

To which I wanted to refer specifically:
What was the cause that you started to have pain?, Is it a pain in some specific part of your body?

Report | 05/29/2023 12:31 am

bit390

Is it that causes you to have such pain is that you fall off the bike?

Report | 05/28/2023 3:00 am

bit390

Hi raggedy !

I really hope that you can recovery your health, and the pain that you feel can fade away emotion_hug

What do you like more coffee or tea?

Report | 12/29/2021 12:26 pm

whalewatcher

Merry christmas and happy new years to you too!!! I miss seeing you guys at the meats too

Report | 03/23/2020 7:05 pm

Nash-eoke_The Patcher

UK/GB Sadly in Lockdown from today =^~^=

But some good news . I finaly created the Mid Week Meet thread

.

2 PST start tomorrow . Thats 10pm for me here in UK/GB

Will last until the normal Dev Meat start time 5 PST , i'm sure you know your own time , i'm lousy with that kind of stuff . But then I am a bit mental rofl

Link below

v v

Subscribe and I will update which server before hand .

https://www.gaiaonline.com/forum/friends-chat/mid-week-meet-second-dose-of-the-dev/t.107990022/Mid Week Meet

.

Another opportunity for us to meet up , chat and support each other in this time of hardship . Lets hope it ends soon confused

Report | 01/26/2020 7:27 am

Nash-eoke_The Patcher

It was pretty scary at the time for sure. Was about 3/4 hour short of Dev start and I had a realy bad turn. Not entirely sure what it was .

No follow up's but patently they said they would inform my own Doctor .

Hoping it doesn't happen again , at one point I thought I was going to pass out in my flat .

.

I improved while I was in Hospital thankfully. Feeling much more normal now.

Thanks Raggedy 1 heart

=^_^=

Report | 12/09/2019 7:07 am

Nash-eoke_The Patcher

The zOMG Flair . I honestly dont know . I know it was mentioned in forums . But I dont think anything further was said at the Dev at least this time around.

Just realised the next Fri is the 13th . Oh dear what does this mean for the Dev . Evil Santa theme or Blood on the snow xd

Welcome to Gaia! :: Gaia :: Profile Comments

Comments

More Information