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Thread: Jim's Update

  1. #681
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    ((((((Marcie)))))) ~

    My prayers will be with you tomorrow as your son and your new daughter-in-law wed. I can only imagine how bittersweet it will be. Please know that my thoughts will be with all of you. May it be a beautiful day.

    ((((((callyflower)))))) ~

    I'm so sorry that you are facing surgery. I'm not familiar with this complication, but I can understand completely that you are unhappy and probably frightened. I hope that you have friends on other forums or FB, who can give you advice, guidance and wisdom. What day is your surgery, so that I can focus my prayers on you?

    Wow, your daughter is really launching into adulthood and independence. And, I can certainly imagine how scary that is for you. It would be great if she could make friends and carpool. Is that an option? I will pray that all goes smoothly for her in her new adventure.

    As for Jim, the options are limited, because we depend upon delivery, and there are very few dispensaries delivering to our area now. As I said, it could have to do with our city's regulations. Also, the dispensaries don't always carry the same products from week to week. So, having the same strain of MJ is inconsistent. There are so many strains of MJ now, it is literally mind boggling. So many growers. New manufacturers crop up all the time.

    This is why we are hoping soon to be able to get his THC capsules again. But that is all contingent on the dispensaries' licensing.

    One might think that in California there is a dispensary on every corner, at least where there isn't a Starbucks. Not so. The dispensary we used last year dropped our city from service. I've spent hours on the internet searching for delivery dispensaries, walk in dispensaries, which might carry his THC capsules. I've spoken to the rep at the company who makes the THC and CBD capsules many times.

    So, even if someone can recommend a strain to Jim, there's no guarantee he'll be able to find it.

    I will check out your links, and perhaps something will click with our situation. Thank you.

    I am going to start a list of questions for Jim to ask Dr. K. As we process this new development, we are coming up with more queries, which only he can answer.

    So far, Jim is managing his pain with 5 mg maintenance. That is progress, since it usually hits him hard on the weekend after an infusion. He is fatigued, but otherwise, he's feeling well. And he looks good.

    Marcie and callyflower ~ Holding you both close to my heart and in my prayers ~ And asking all, who read this, to join with me ~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  3. #682
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    My dear Rose,
    I simply cannot tell you how happy I was to read that you went to the party and especially that you were surrounded by your loving second family. That made my heart soar!

    I've been mulling over Jim's situation. Of course it's terribly disappointing that the tumour hasn't shrunk. I'm so sorry. And yet - one has to look for what is positive in every situation. To me, what is so positive is that Jim looks well. You've said more than once that he looks fantastic - he's put on weight, his colour is good, he simply looks in excellent health (despite his RA pain and dips after Opdivo treatments, etc.). But generally he looks really good. I remember doctor after doctor saying about Nicholas in the face of each new and devastating diagnosis, "We don't know how he will do. What you see is what you get. Look at your son, he looks good!" It was hard to believe all would be well simply based on looks in the face of so much dire information on paper. What I'm starting to believe about Jim is the same thing that I now firmly believe about Nick: he is complex, but he is not frail. He has undeniable serious health challenges, but he is resilient. I know that you are not frail, Rose, and you sure are resilient. But I think Jim is too. And maybe this is a disease that he is managing quite well and will continue to do so for years into the future. Maybe that's the way it will be. How can you (and he) ever relax into this reality? I don't know and I sure have no idea how I could relax knowing that I had a tumour in my chest. But I guess the thing to hold on to is that he looks good.
    I send my love and a question that I wonder a lot: What can I do to help you? I would like to help, I'm trying to think of something I could send you or something I could research for you - please have a think and give me a job to do - I'm ready, willing and able! xoxoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  5. #683
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    ((((((Donna)))))) ~

    Bless your heart, and thank you so much.

    You've done so much and helped us in so many ways, dear friend. But, there might be something you could assist me with, because I am at a crossroads and can't seem to move forward.

    Coordinating all of the information I want to present to the attorney to establish a Special Needs Trust for Jonathan. I don't know where to begin, because there are so many aspects to consider. Friends, who might be able to help as a network for Jon's care, after Jim and I die, are beginning to dwindle. All are Seniors and have health issues. Our godchildren have shown no interest in helping us now or in the future.

    So, perhaps we could communicate privately and you could provide me with some guidance and direction? Or light a fire under me? Or send me to Cat Island for a few days?

    That would be top of my list, Donna. I must address this. Time marches on.

    You are so right about Jim looking good. We typically go with the clinical presentation with Jon, and I do that with Jim too. Clinically, Jim is in great shape. And, yes, he does look good, and everyone, who sees him acknowledges this.

    Today, John's niece came over and cut my hair. She hasn't seen Jim since January. He looked pretty grey and grim then, as that was after his 10 rounds of radiation and before he started Opdivo. She said, "You look great, Jim! Wow!"

    Jon's nurse sees Jim every month, and she notices changes in him, naturally. She continues to praise him for how well he is doing clinically. The toenail team is here every 9 weeks. They also have witnessed Jim's transformation. Even Jon's GI remarked at how well Jim looks, when he came out in the summer to change Jon's G Tube.

    Jim often says, "I have some pain, but I feel all right in myself."

    That is definitely something worth clinging to, and we do. Even with all of Jon's problems, he looks good too. We just take each day as it comes and keep working toward healing.

    TONIGHT'S ADVENTURE

    Jon's flailing while trying to fall asleep last night resulted in abrasions to his left thigh again. At 2 a.m., I cleaned it and applied a wound care pad. His underpads are shredded, with underpad cotton all over the house. And his flaking skin. I'm promising to buy a Roomba, because vacuuming is wearing me out.

    John texted that he was working late, then he needed to go to his daughter's big volleyball game tonight. So, he deferred to tomorrow to turn Jon.

    Jim declared that he would turn Jon tonight, and I said, "Nope."

    We have to address the gushing wound on his thigh, but we don't have to turn him to accomplish this. I can slide a clean underpad beneath him. Stop gap measures to mitigate the problem until tomorrow. Jim doesn't need to tempt fate by turning Jon and then taking increased steroids for 2 days.

    I'm thinking, "What would I do, if Jim wasn't here?" I'd wait for John and do what I could on my own." Jim can lift Jon's leg. i can do the rest.

    It's not ideal. But what is?

    Thank you again, Donna for your love, prayers and offers to help us.

    You know that you and your beautiful family are always in our prayers~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  7. #684
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    My dear Rose, Of course I would LOVE to help put a package together for the attorney! I can definitely help. I'm just off to the airport now enroute to Cincinnati for the CP conference, but I will have plenty of time between meetings to work on this. I will email you with some materials to begin and some questions.
    Much love, Donna xox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  9. #685
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    ((((((Donna)))))) ~

    Thank you so very much, dear friend. I am adrift in a sea of crisis, and my mind is turning to mush. I need your help to set me on course, point me in the right direction, and give me the tools to craft the best scenario for Jon's care. This is the most important thing I need to do. But daily life zaps me of all of my energy and brain cells.

    Today, I handed Jim the phone to call our dentist to have the two nubs of teeth extracted. I sat beside him and coached him, as always. He searches for words, so I fill them in. He forgets to ask a question, so I prompt him. He has an appointment for Monday at 9:30 a.m. That's a tad early, as none of us sleep very well.

    However, Jim is having difficulty eating certain foods, because his denture is askew without the pegs. He's using too much adhesive, and that's become annoying. So the solution is to remove the teeth and redesign his denture. This is good, because without his teeth, he likely won't need to see our dentist again, unless he has denture problems.

    After Jim finished the call, he went back to his nest and said, "I think she said I need to be sedated."

    I shook my head, "Unlikely, very unlikely." Then I thought, "Okay, if she might do that, we have to know, because then we'll need to ask John if he can transport you."

    So, I called the dentist back, and the receptionist said, "Anesthetic, the usual local anesthetic."

    Okay. Anesthesia is a sedative. But he can drive himself with numb gums.

    Jim and I were discussing the size of his tumor, and I said that I wanted to see it. So, Jim is going to ask Dr. K to either send a copy of the CT scan to our health portal, or print a copy for Jim to bring home. I don't know why I haven't asked for this before. I just want to see what we're dealing with, because I don't know what it looks like. I want to see inside Jim's chest. With that image, I will meditate and visualize it disappearing. While I have been doing this every day and night, I'm using an imaginary image.

    Thank you, Donna, for helping me. There is no rush. I wish I could attend your conference.

    Prayers for you and your beautiful family, and for all of our dear friends here ~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  11. #686
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    Rose, would it be a good idea to ask Dr. K to send the last two scans? That way you would have something to compare. It would be good if you had the first one and the last one I would think.
    Virginia

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  13. #687
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    Rose, as always so much going on! And as always I'm amazed! I read updates frequently but so sorry I don't always get round to writing. Your family is always in my prayers. I loved especially reading about the party you were able to attend. I'm so gad you had that time with some great friends! I'm so glad Donna is able to help you. Thanks for keeping us in the loop with updates.
    Mary Grace

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