Trudy Tackles MS | Community
Trudy Tackles MS
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24.01.2022 Hi Family and friends day 0+39 Well after the great news of being allowed to have visitors ,we have hit an unidentified bump in the road( and without getting to see a single visitor) Trudy was admitted to hospital in the wee hours of sat night / sun morning. All we can say at the moment is that her temperatures have been too high ( 39.3 on admission ) All blood test at this point have come back clean of infections. The doctors are not sure at this stage what seems to be cau...sing the spikes in temps. So more swabs , bloods, scans to come. Even though we have been extremely careful with keeping her locked away from the rest of the world ( she has only been outside once since we came home and that was just to the neurologist and home) this is a good reminder to our fellow HSCTer family's to be very careful. Trudy is still in good spirits and soldiering along really well. Very , very proud of our amazing wife and mum on how she is taking all in her stride Hopefully we can deliver some happier news in a few days time. Luv Trudy and Swainy See more
23.01.2022 Hi all , we would like to share this story. This amazing 12 year old and her family, selfishly chose to help us on our MS journey. This is very touching and not something that your average 12 year old is thinking about at this stage of their life (paying it forward) Its this kind of amazing support from our whole community that makes us very humbled and words can not thankyou all enough. Please click on the link below to read in Kate's own words from her school assignment. http://www.canowindranews.com.au//paying-it-forward-all-/
23.01.2022 Catching up with John and Amanda Norman.
22.01.2022 Nogzy and his mate
21.01.2022 Hi family and friends day 0+46 Trudy is starting her second week in hospital. We still don't know why or what has caused this speed hump in her recovery. So far the blood tests have come back negative for any nasties. The heamotologist has said that she is a mystery? Trudy's temperatures have come back down in the last 48hrs and have stabslised( this is great news) we have been in constant contact with Dr Fed in Russia , and he has said that a certain percentage of transplan...t patients can have high temps without any infections. ( maybe Trudy has fallen into this percentage bracket) Trudy is feeling a lot better and has started to eat again. The doctors would like to see her weight come back up now and the results of yet more blood tests( taking blood for different tests on a daily basis ) She will start rehab in the next couple of days and It looks like maybe she will be allowed back home at the start of next week if all stays on track. The doctor seems to think that we can un isolate her and again have visitors ( you will have to come to the hospital for now) and again only if you are 100% healthy. Thank you to the friends that again have cooked our kids a feed( one less thing to have to worry about) Fingers crossed all now stays on track and the next update will see her back home. Love Trudy and Swainy See more
21.01.2022 Tonight's dinner
19.01.2022 Just finished being cooked
19.01.2022 Hi family and friends day 0+50 ( wow time is flying ) Trudy has broken out of hospital at last We still don't know why her temperature was so high ( probably never know) She is looking forward to being in her own bed again ( can't blame her , I'll be in there with her , what girl wouldn't want that )... Trudy's immune system is still quite young , so we still have to remain OCD when it comes to germs and keeping the place really clean. This was just a slight hump in the road and we will now continue on strongly with her HSCT recovery. We are looking forward to finally having visitors ( we are open for business) Remember to please be 100% healthy , shoes off and we will supply the hand sanitizer and maybe just ring before calling around to make sure Trudy's not having a snooze. Thank you again to the visitors at the hospital , it really helped Trudy's time there tick along a bit quicker Thank you to the mums again for the meals that you cooked, we will get your containers back to over the next few days Luv Trudy and Swainy See more
15.01.2022 Hi Family and Friends day 0+184 Wow, time is flying, yesterday was exactly six months since Trudy’s Transplant (new birthday) We have been very busy in the last... few months, it seems we are starting to get back to some normality and like everyone, getting caught up in the everyday running’s of life. Trudy is still making great progress, she is well into her physio sessions and still has a couple more months to go, her haematologist has told her that she is "plumb good’’ and spot on" in how he would expect her immune system to be at this stage of her recovery and now only wants to see her every three months. (Trudy still has to be re immunised , but not until about the 18 month mark post HSCT) There was some money left over from the enormous generosity of all you guys that helped with fundraising and donations, to help us get to Moscow, Just a little over $9000, those left over funds have been passed forward and donated to the cancer care west dept. for trials of medication, and also the give me five for kids foundation, I’m sure everyone will agree they both are worthy causes :) Trudy has had her MRI scan and yesterday we went to the neurologist to get the findings of the report...................... He put Trudy through all his testing again and said he is surprisingly happy with her recovery and her results, and the big one............ Trudy also has "NO NEW LESIONS", it seems that what Dr Fedorenko and his team promised they would do, they have achieved, and we feel that they have halted the progression of Trudy’s MS due to the turnaround in improvements instead of deterioration Trudy may also be one of the lucky ones as she has also had some improvements to her symptoms, her leg doesn’t drag anymore, less pins and needles, shit loads more energy, and better memory (this one has made it a bit harder for me though, cause she can recall a lot more conversations and I can’t get away with the line...... You said I could go to the pub with my mates darl :( All this is great news, however we still have a long way to go, and as expected we are still on the HSCT roller coaster where Trudy goes all day like a Duracell battery and other days she feels a bit flat and needs lots of rest, but overall she is doing an awesome job. We still can’t thank you all enough for what you have helped us to achieve. We wish you and your families an absolutely salubriously sensational Christmas and New Year, and stay safe Lots a luv Trudy, Swainy and the kid’s xxxx See more
12.01.2022 The women that started it all for Trudy xxx
10.01.2022 Skeeta with his mate
07.01.2022 Yummy , looks good.
07.01.2022 Hi family and friends day 0+104 Its been 3 months since Trudy's transplant and almost 3 months since we returned to Straya. We have been like a bear and hibernating through our winter(and yeah I've been a bit of a slacko with the updates) Things have been going along slowly but smoothly , there really hasn't been too much to write about , today we went back for our monthly visit to the haematologist and he is very happy with how Trudy's immune system is at the three month mar...k and is now only wanting blood test every two months. Trudy is getting stronger every day and starting to gain some of the weight back that she had lost through the treatment , we still have our not so good days , but this is all part of the HSCT roller coaster ride that we knew we were going to have to face. Trudy has slowly been getting back into the outside world ( and now things are warming up , we are sure she will get out and about even more often) Trudy has now started to drive again too(I've let her upgrade from her L,s back to her full license) and she is now more independent. Thank you to every one that has stopped me in the street to ask how Trudy is going and to offer your support and help. Especially to our little friend that has been coming around a couple of times a week to brighten our whole house up whilst she is here, and really helping Trudy with her recovery xxxxx . Lots of love Trudy and Swainy See more
07.01.2022 Here is the latest update on us
06.01.2022 Hi Family and Friends day 0+36 The last week or so we have just been bunkered down indoors and staying out of the winter weather. Trudy is still very weak and tired ,which is what we were setting ourselves for (her body has been through a hard slog and could take up to six months or so to start feeling well again) Yesterday was the first time since we have been home that Trudy went outdoors ,(too many colds , bugs and flues around) This was to see the haematologist for the fi...rst time since we have been back and to give us an update on her new immune system. He has informed us that her immune system is at a safe enough level to open the doors and we can now except visitors , yippee:) There are some rules that we will be asking to be followed and strictly enforcing , please don't be offended if the big fat security guard(that's me and you don't wanna turn me into a "donkey on the edge") that greets you at the front door asks you to observe the following:- 1. please phone before coming in case Trudy resting 2. please be 100% healthy or do not come 3. All shoes will have to stay outside 4.upon entry , use the hand sanitiser that you will be supplied with 5. bring lots of cuddles and laughter with you we are looking forward to catching up with family and friends at last :) I feel i'm still on top of the house management duties(Trudy may tell you different , just remember she's on drugs though) Tonight I cooked up a storm (you can take the boy outa Russia , but you cant take Russia outa the boy) OX TONGUE was dished up and no-one new what they were tucking into until after there plates were polished off(I had one "nup" don't like it , not eating it and the rest of me peeps took a liking to it ,Trudy still don't do offal so I didn't try my luck with her) so dinner invitations may be arriving in your letter box soon...... we have been in undated with phone calls and please keep them coming , its very nice to hear your voices. hope this finds you all happy and healthy luv Trudy & Swainy
06.01.2022 Merry Christmas and happy new year
02.01.2022 Hi Family and friends day 0+365 days. "HAPPY NEW BIRTHDAY" Exactly one year ago today we were in Russias Pirogov hospital under the care of the amazing Dr Fedor...enko and his team. Today was the day that Trudy recieved her stem cell transplant and began her new life at halting MS. To be totally honest , She hasn't looked back and wouldnt hesitate to do it all again. The last year has seen Trudy go from just functioning to get through her day , to now striving on 4-5 hours sleep (sometimes less) Pilates classes twice a week(and looking at doing more classes) traveling all over NSW with kids sport and the weekend grind of kids sport on saturdays and sundays. Trudy seen her neurologists again yesterday and after all his tests and seeing how much improvement she has made(even more improvement than last time he seen her six months ago) he said "THIS TREATMENT HAS BEEN VERY ,VERY, SUCCESSFULL". He would like to see her in another six months time and she will have another MRI scan to check to see if all things are still on the improve. The heamotologists is next on the list (next month) and if all is good with Trudy's blood counts we are expecting he may start with the reimmunisation process. We went and caught up with Amanda and John Norman from Wagga Wagga. Amanda had the same treatment as Trudy(her treatment was two weeks behind Trudes) and she also is flying along with the recovery process. And just in case anyones wondering..............anyone at all......... Tim ,the carer, thats me , well he's not doing too bad either..lol Lots a luv Trudy , Swainy and the kids. See more
01.01.2022 Hi family and friends ,day 0+26 Trudy has had a pretty quiet week just resting as much as possible ,the bone pain has gone and hopefully will stay away , she has had her last dose of steroids and when this leaves her system we are expecting her to decline for a bit until her body starts to recover on its own. Her skin has dried out due to the chemo , so we are putting moisturiser all over her very frequently , she is getting stronger at times ,so she is up and walking about t...he house when she feels up to it. The cold snowy weather has made it pretty easy for her to stay snuggled up in bed or under the blanket on the lounge. The boys and I ventured outside to enjoy the snow and somehow the testosterone kicked in and the snow balls started flying (quite frequently towards my nose too I might add , dunno why they would want to target me) Hairy bacteria Hayley gave a small dose of her bugs to me , so I guess im #1 hairy bacteria again , ive been masked up and sleeping in the dog house(feels different sleeping in the dog house when im not really in trouble) I feel I've handled the home management duties satisfactorily thus far(it has been school holls though) and today was the start of getting kids off to school and shopping , cleaning , washing , cooking ,vacuuming , pick up(from school) , off to training , and everything else that goes with the home management position and I still had time to do coffee and cake with the girls and then catch a movie(im starting to think that I might not return to work because life as home manager is pretty good):) Some how im pretty sure that I will still find the energy to play mummies and daddies when the kids are tucked in tight later tonight <3 xxx <3 So far everything is going as expected with the recovery process Luv Trudy and Swainy See more
