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    Hi Rose, I'm glad you got a walk outside. Just...

    Hi Rose,
    I'm glad you got a walk outside. Just getting out even for a few minutes each day is so important. Breathing fresh air and seeing nature - things growing. I'm glad Nancy was able to get a...
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    HI dear Rose I'm sorry that I've been...

    HI dear Rose
    I'm sorry that I've been incommunicado the last few days! We got home from South Carolina just fine and the next morning I woke up feeling unwell. Sore throat and fever but no cough or...
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    Hi Rose, we are in Winchester VA enroute home. We...

    Hi Rose, we are in Winchester VA enroute home. We heard today from Nick's home that he's on lockdown and our Prime Minister has ordered all returning Canadians coming from outside the country (incl...
  4. Hi - question - in the new update, is there any...

    Hi - question - in the new update, is there any talk of improving the data security? Currently, the forum is not secure and is google searchable (I received a PM from a university friend who had read...
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    Thank you, Rose and Jim! We are fine - just...

    Thank you, Rose and Jim! We are fine - just skyped with Nick and his helper said he was quite quiet today. Nervous, probably. Anyway, he had his favourite nurse with him tonight and so we had a lot...
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    Hi dear Rose, We are heading home first thing in...

    Hi dear Rose,
    We are heading home first thing in the morning tomorrow. Nick is fine, but in isolation for precaution. We'll likely be self-isolating for 2 weeks after our arrival (I hope we can get...
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    Hi Rose, I say it again, what a roller coaster...

    Hi Rose,
    I say it again, what a roller coaster life you and Jim lead! Your looming storm and your cancer care reminded me of this NYT opinion piece from Margaret Renkl in yesterday's paper - she...
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    Hi Rose, Oh, it is so frustrating that Jim is...

    Hi Rose,
    Oh, it is so frustrating that Jim is filling up with fluid again and that he's just not able to take in the foods that you prepare. I'm not clear on how often Jim can manage going in for...
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    Thinking of you Rose and hoping all is well with...

    Thinking of you Rose and hoping all is well with you and Jim. Sending much love and prayers xoxo Donna
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    Hi dear Rose, here is a recipe for sugar free...

    Hi dear Rose, here is a recipe for sugar free blueberry pie! https://www.food.com/recipe/sugar-free-blueberry-pie-447990. Let me know if it's OK. xoxo Love D
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    MARK Hyman!!! He is great!

    MARK Hyman!!! He is great!
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    Hi Rose, We are staying over at hotels for two...

    Hi Rose,
    We are staying over at hotels for two nights on the way down. Taking our time with lots of stops for Daisy (and us). I think it will be fine - I bought a subscription to Audible books and...
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    Hi Rose, I am so glad that Jim felt better...

    Hi Rose,
    I am so glad that Jim felt better enough to eat a good meal!!! That is wonderful news. Don't worry, we are not flying! We are driving down to SC with Daisy. I have alcohol wipes for...
  14. PS: Mike, here's a blog post I wrote in 2013...

    PS: Mike, here's a blog post I wrote in 2013 about the history of braintalk: https://www.donnathomson.com/2013/04/cyber-friendship-love-and-grief.html
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    Hi my Rose, Thank you for all your guidance for...

    Hi my Rose, Thank you for all your guidance for the hospital visit - will do! Or I'll try anyway, Nick has a lot of trouble tolerating anything on his face which is why we could never use a CPAP for...
  16. Hi again, FYI I talk about the friendships forged...

    Hi again, FYI I talk about the friendships forged in BT (Child Neuro forum) in my first book, The Four Walls of My Freedom. It's interesting to think about the trajectory of those friendships and how...
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    Oh Rose, what a rollercoaster. I pray that the...

    Oh Rose, what a rollercoaster. I pray that the increased lasix will open up some space for Jim's appetite to return. No one could be more devoted and creative in finding solutions for nourishment and...
  18. Oh wow, I remember this!!! I remember too when...

    Oh wow, I remember this!!! I remember too when John Lester left and many of us wondered then too, would our community endure? Being offline during the flood and a couple of other times during times...
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    Hooray for no cancer cells! Rose, I wonder if the...

    Hooray for no cancer cells! Rose, I wonder if the diarrhea could also be caused by the Amoxil? And whether yogurt and probiotics could help. Certainly Amoxil caused Nick and Natalie to have loose...
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    My dear Rose, I am home now and have been...

    My dear Rose,
    I am home now and have been catching up on all your news. I am so glad that Jim had the drainage! I feel very hopeful that his appetite will come back. The procedure itself must have...
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    Dear Rose, What a roller coaster! I'm so glad...

    Dear Rose,
    What a roller coaster! I'm so glad that Jim (and you) have had some good and happy moments - but it's such a worry that things can change so quickly. I know how important it is for you...
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    Hi Rose! I'm just like Mary Grace - I love...

    Hi Rose!
    I'm just like Mary Grace - I love making apple pies and make my own pastry, using Macs if they have them. Empire apples are a good substitute but any apples will do. In Cat Island, they...
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    Oh Rose. It must have been so hard to move Jim...

    Oh Rose. It must have been so hard to move Jim into Jon's room, but what must be done must be done and there is no one who knows that better than you. Always, you (we) put those we love first. You...
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    Hi Rose and Funnylegs4, a condom catheter might...

    Hi Rose and Funnylegs4, a condom catheter might be a great idea for overnight! It's a bit like using a bedpan and takes a little getting used to but Nick relies on one (for him, during the day), but...
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    Hi dear Rose. Jim and I are in Cat Island and...

    Hi dear Rose.
    Jim and I are in Cat Island and settled peacefully. We've skyped with Nick and he is doing great - visits from an old high school helper and also from his uncle (my brother in law) to...
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    Happy Birthday, Jim! With love from all our...

    Happy Birthday, Jim! With love from all our family :tennis:*hworry 5352
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    Thank you so much for the update, Rose. Thank you...

    Thank you so much for the update, Rose. Thank you always for taking the time to tell us (all of us here who care so much about you and Jim) what is happening and why. When I read your thoughts and...
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    Hallelujah for an orgain shake and a pizza! It...

    Hallelujah for an orgain shake and a pizza! It made me so happy to read that Jim has a bit of appetite and that John and Nancy are back. Phew. I am so glad that you have some support. Now, my prayer...
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    Oh man, what a week it has been for you and Jim,...

    Oh man, what a week it has been for you and Jim, Rose! Honestly, it's the principle at work of "what can go wrong WILL go wrong." Hopefully next week with Nancy back, will be much much smoother. I...
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    Hi Rose,I read this and of course thought of you....

    Hi Rose,I read this and of course thought of you. https://www.compassionatefriends.org/blog/7-things-learned-since-loss-child/?fbclid=IwAR332iGZ8hq0hTmuUd32WYdR2IEytzx1Mo128XZ6FeKVAh28x0ETtxg6-00.
    ...
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    Ohhhh Rose. I am sorry that everything is just...

    Ohhhh Rose. I am sorry that everything is just piling up on you. It always seems that our loved ones go into emergency mode at 5:01 on Friday afternoon when the doctor is on holiday, when the orders...
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    Dear Rose, The longing and sadness for Jon and...

    Dear Rose,
    The longing and sadness for Jon and Michael is so searing, so vivid, Rose. I cannot believe it's been nine months since Jon's death - that is almost a year - how can that be? I am so...
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    Hi everyone! I'm not sure if anyone is interested...

    Hi everyone! I'm not sure if anyone is interested in books related to caregiving but if you are, then have a look at my latest co-authored book, The Unexpected Journey of Caring: The Transformation...
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    My dear Rose, Jim and you are being so brave and...

    My dear Rose, Jim and you are being so brave and so loving towards each other. Yes, his words to you made my heart melt! His thank yous.

    I'm so glad that the swelling down and that the pain has...
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    Dear Rose, Cally and Mary Grace have given you...

    Dear Rose,
    Cally and Mary Grace have given you such wonderful support and true friendship. I know you know this, but you are not alone! We love you!

    It sounds like you and Jim are working so...
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    Hi Rose and Callyflower - would pressure socks...

    Hi Rose and Callyflower - would pressure socks help at all? You both are the experts here. Rose, I send you so much love and hopes that today is a good day. You are so right - "we can know our body...
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    Hi Rose, You are balancing a tight rope between...

    Hi Rose,
    You are balancing a tight rope between respect for Jim's independence/personhood/dignity and his need for care when his own vulnerability interferes with his self-care. Please don't blame...
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    Oh my dear Rose, I am so sorry about your rash...

    Oh my dear Rose, I am so sorry about your rash but I'm not surprised! I remember the last time you had this - I can't recall what particular stress provoked it last time, but I remember your symptoms...
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    Hi Rose, Oh I am sorry that Jim's vision is...

    Hi Rose, Oh I am sorry that Jim's vision is failing. I wonder whether a nice big magnifying glass would help? I wonder if watching the The Big Fat New Year's Quiz from the BBC would make you both...
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    Hi Rose, How was today? Did the buckeyes win? I...

    Hi Rose,
    How was today? Did the buckeyes win? I am thinking of movies that you and Jim might really like. Two of our favourite British soccer movies are Fever Pitch (with Colin Firth - it's about a...
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    Hi Rose, I am so glad you were able to have...

    Hi Rose, I am so glad you were able to have dinner and thank goodness for your plumber! Now, hopefully you can both relax a bit (hoping that Jim's pain abates) before you have to tackle the mould and...
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    Dear Rose, My heart just sank when I read what...

    Dear Rose,
    My heart just sank when I read what happened yesterday. I am so sorry - it feels like an injury on top of an injury. Everything is so very fragile in your house - your grief, Jim's...
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    Dear Rose, I feel so sad for you and for Jim. The...

    Dear Rose, I feel so sad for you and for Jim. The holidays will be so sad without Jon and so much unknown looming for Jim. I don't know, maybe this is an opportunity to remember your beautiful sons...
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    Hi Rose, Just wondering how you are doing. We...

    Hi Rose,
    Just wondering how you are doing. We are fine - had a shopping trip yesterday to bookshops and Starbucks with Nick. He has grown a goatee! Sending much love and thinking of you.
    Donna xox
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    Hi Rose and everyone, Rose, I am so relieved...

    Hi Rose and everyone,
    Rose, I am so relieved that Jim's stool is back to normal. That's one less thing to worry about. It's been a busy week over here. I went to two conferences - Children's...
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    Dear Rose, I will light 2 candles tomorrow - one...

    Dear Rose, I will light 2 candles tomorrow - one for Jon and the other for Michael. I will always remember them. xox Donna
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    Dear Rose, I am so glad you were there to help...

    Dear Rose,
    I am so glad you were there to help the Korean lady and that by chance, other Koreans were nearby to help her. Thank goodness. I'm so sorry though that Jim is not feeling well at all -...
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    Hi Rose, I didn't know you went to OSU! Our...

    Hi Rose, I didn't know you went to OSU! Our Natalie's partner is from Dayton and that's where they both spent Thanksgiving. Nat's Alex is a buckeyes fan too! They had a sad holiday this year - Alex...
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    CallyFlower, your suggestions are full of caring...

    CallyFlower, your suggestions are full of caring and experience - at least it's reassuring that ER is a last resort if the ascites gets beyond the pale over the weekend. Rose, you don't need to...
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    My dear Rose, I am so sorry to hear that Jim is...

    My dear Rose,
    I am so sorry to hear that Jim is suffering with this fluid and with the side effects of radiation. It sounds like CallyFlower has some great advice and I hope Dr. K listens to you...
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    Dear Rose, I can understand Jim's frustration...

    Dear Rose,
    I can understand Jim's frustration and I think that women are better (very generally speaking) at managing loss because we spend so much time throughout our lives serving the needs of...
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    Dear Rose, Thank you so much for keeping us all...

    Dear Rose, Thank you so much for keeping us all up to date on how it is going for you and for Jim. I appreciate your updates so much.

    I hope Jim can have a drainage soon - even if the fluid comes...
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    Dear Rose, What's next? is the question we all...

    Dear Rose,
    What's next? is the question we all ask ourselves, but it's especially urgent in your family. What a series of stories from the waiting room! I had a message here that said 'click to...
  54. Hi LostParent, I am so sorry but I can't remember...

    Hi LostParent, I am so sorry but I can't remember where you are located - are you in the UK? London? I live in Canada but we lived for years in London and my son's CVI was diagnosed at the Wolfson...
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    Dear Rose, I agree with Agate. Marie Kondo is a...

    Dear Rose,
    I agree with Agate. Marie Kondo is a spiritual person and she would deeply understand the meaning and memories of your spaces. Something tells me too, that she would understand that...
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    My dear Rose, I feel your exhaustion and...

    My dear Rose,
    I feel your exhaustion and despair in your words. But I know you are trying so, so hard to stay positive for Jim. Yet you see him filling with fluid, losing his appetite and then...
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    Dear Rose, Jim and I have been watching the...

    Dear Rose,
    Jim and I have been watching the fires and have been so worried for you and for everyone in the state. We have two nieces in the Venice Beach area of LA and one of them has two children...
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    Dear Rose, Thank you so much for sharing such a...

    Dear Rose,
    Thank you so much for sharing such a vivid description of your day, your community in all its deep emotion. I read through everything you had written and gasped at the end because I had...
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    Hi dear Rose, I am glad that Jim is feeling...

    Hi dear Rose,
    I am glad that Jim is feeling better but I hope he stays that way after having his next treatment. I am glad that you are with him too - what a blessing for you to be with him. It...
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    Ohhh dear, Rose. I am so sorry that Jim had a...

    Ohhh dear, Rose. I am so sorry that Jim had a terrible night and missed his treatment. I am so very sorry that he was in pain. Happy though, that he is feeling better after a rest. Why do the...
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    Dear Rose, I am getting caught up on your news...

    Dear Rose,
    I am getting caught up on your news today. I am surprised how quick the treatments are. I am not surprised by the dietician and the long walk - people who work in hospitals have no clue...
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    Dear Rose, NO CANCER IN THE FLUID! This is...

    Dear Rose,
    NO CANCER IN THE FLUID! This is wonderful news indeed! And one must focus on the good news (which you teach us all to do, constantly, Rose). The worry is why the fluid comes back so fast...
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    PS: I am so glad that you have your iPad if/when...

    PS: I am so glad that you have your iPad if/when your signals fails!
  64. Replies
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    My dearest Rose, I am sorry that I've been out...

    My dearest Rose,
    I am sorry that I've been out of touch - we have been up north at the cottage where the internet is very slow so I stay off the computer most of the time. There's no cell signal...
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    Hi Mary Grace and Kathleen! Oh how wonderful to...

    Hi Mary Grace and Kathleen! Oh how wonderful to see your beautiful girl having so much fun and being so active! I know what you mean about transferring from peds to adults. Ugh, it's no fun and...
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    My dear Rose, I hope you find just the right...

    My dear Rose,
    I hope you find just the right car - that would be a blessing, not to have to climb up inside the van. That is just too hard for you both. We have a Subaru which is a great car for...
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    Thinking of you and Jim, Rose. Sending love and...

    Thinking of you and Jim, Rose. Sending love and healing thoughts/energy/prayers over to you both. xoxo Donna
  68. Replies
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    My dear Rose, Thank you for your updates and...

    My dear Rose,
    Thank you for your updates and for all the information about Jim and you. I wondered too about a transfusion - could that help? It's the first thing I thought of. The scan results are...
  69. Replies
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    Hi dear Rose, Oh don't feel badly that it's...

    Hi dear Rose, Oh don't feel badly that it's taking time and energy to get the iPad down! There are still many things I can't do on it (I much prefer my laptop!) and my Mom spent the first several...
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    Hi Rose! I am really glad that Jim is 'getting...

    Hi Rose! I am really glad that Jim is 'getting the iPad' slowly but surely. I do have one suggestion - could you ask John to 'hide' the icons on the homepage that you don't need or use very often?...
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    Ohhh that photo, Rose! Thank you so much for...

    Ohhh that photo, Rose! Thank you so much for sharing your sweet treasures over the years. I know that I feel I know them so well. Sending much love xoxo Donna
  72. Replies
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    Oh Lord, Rose - I didn't know whether to laugh or...

    Oh Lord, Rose - I didn't know whether to laugh or cry when I read your saga of the Ipad! Well, all I can say is... two steps forward and one step back - you are still one step ahead, right? Yes, a...
  73. Replies
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    Ahhhh Rose, none of this should be this difficult...

    Ahhhh Rose, none of this should be this difficult - the computer, the jury duty - everything! It's crazy making that these life problems get in the way of your caring for Jim and for yourself. I...
  74. Replies
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    Hi Rose and everyone, I have had a great time...

    Hi Rose and everyone, I have had a great time catching up on all the tech talk and on everyone's news. Rose, I have an apple macbook pro laptop and I can plug it in using a cable if I want. We do...
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    My dear Rose, I am so glad to read your update!...

    My dear Rose,
    I am so glad to read your update! For some reason, I was looking at the other (older) thread about Jim and messaging you there. Oh well, now I have your news and I am much relieved,...
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