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Thread: Jim's Update

  1. #491
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    ((((((Hugs to All)))))) ~

    Jeanie ~

    Thank you so much for your prayers. I will tell John you are praying for him and his family, and I know he will be grateful.

    John was scheduled to come over to turn Jon this evening, but Jim insisted that he could do it and wanted to give John a rest to focus on his family and his mom. Of course, John offered anyway, bless him. But Jim is stubborn and said, "No, I'll do it." And so we did.

    John said that his mom is having a spinal tap in the morning, but he isn't sure what they're looking for.

    Jim sees Dr. K on Weds. morning and has an infusion in the afternoon. We had to really pursue this to get an hour later appointment.

    I cleaned like a whirling dervish today, preparing for the Toenail Team for Jon tomorrow. The assistant, who does his nails, called today to tell me that his appointment window is 2 hours earlier! Four patients dropped out. ACK! I thought I'd have more time to get ready tomorrow. Oh well, that means I bathe Jon tonight and wrap their little Mother's Day gifts, while watching TV with Jon. These gals have been visiting every 6 weeks for years, and we love them like family.

    I need to call Jon's PT to schedule his visit, and Jon's GI to schedule his visit to change Jon's G Tube. I need more days, more hours, more hands, more brain cells ... MORE SLEEP!

    Thank you all for your love, prayers, support and encouragement.

    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. #492
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    Praying that all goes well tomorrow at Jim's appointment and infusion.

    I absolutely love the view you have. That picture looks like a painting I would want on my wall. The trees instantly reminded me of the Truffulla trees in the Lorax movie!

    Praying for some rest for you all.
    Mary Grace

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  5. #493
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    Hi Rose,
    I put a package in the mail for you yesterday. Let me know when it arrives, probably sometime next week. Sending love! And an early HAPPY MOTHER'S DAY!!!! You are truly a inspirational Mom and friend. xoxo
    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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  7. #494
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you for your prayers as always.

    It is beautiful, and our weather is gorgeous these days. Here are two more views from the same location:

    Screen Shot 2018-05-09 at 5.31.28 PM.jpg

    The cactus next to the Century Tree is now sprouting a tree!

    Screen Shot 2018-05-09 at 5.32.12 PM.jpg

    The residents, whose homes back up to the golf course, are treated to magnificent sunsets every night. We used to take our boys in their wheelchairs to this spot to watch the sunsets.

    I love all of our trees, but I wish that the golf course would trim the palms, because if there is a fire, they will go up like torches. I should ask our Association Board to write to the golf course owners requesting trimming the palm trees. I'll do that in my spare time.

    Anxiously awaiting test results for Kathleen and sending prayers ~

    Donna ~

    Thank you so much! I look forward to receiving your gift, and I will definitely let you know when it arrives. You are so very thoughtful.

    HAPPY MOTHER'S DAY to you too! What are your plans for the day? Will you be seeing your mom over the weekend?

    Mother's Day is truly bittersweet for me, as it was the day when Michael entered the hospital, coding in the ER, to begin his final journey on Earth. Every May, I relive those days, still vivid in my memory, as if it was yesterday. And it is now 15 years.

    Every night/morning as I pray and meditate to relax and go to sleep, I ask Michael to visit me in my dreams. Of course, I need to sleep to dream! But that would be a lovely gift for me for Mother's Day.

    My gifts are Jon and Jim, still here, still fighting to stay here, still laughing and loving and filling my world with exquisite joy.

    I hope that you and all of our wonderful Moms here on CN and BT have a beautiful Mother's Day.

    JIM'S VISIT WITH DR. K

    Dr. K explained every detail of Jim's CT scan and MRI results, while showing Jim the pictures on a computer. He included comparisons to previous scans. Where there was just a solid mass, there now is a big hole around the interior of the mass, where the cancer cells are being destroyed.

    Dr. K said, "This is fantastic!"

    There are nodules on the lower lobe, which Dr. K said he's watching, but he's not concerned about them at this point.

    On the MRI, Dr. K said that the areas noted by the radiologist are poorly defined. Dr. K consulted with another colleague, who agreed that the areas could be anything or nothing. Dr. K said, "It could be scar tissue that we haven't seen before from a previous head injury."

    Jim recalls in the 60s in England during the Beatles craze being in a crowd full of Mods and Rockers. Someone asked him whether he was a Mod or a Rocker, and he said, "I'm a Mocker." Next thing he knew, he was struck on the head with a pipe wrench.

    Dr. K mentioned something about "the powers that be" (Jim's phrase) are trying to push Keytruda over Opdivo for immunotherapy treatments. Since an infusion nurse told Jim that about half of the cancer patients are receiving Opdivo, maybe a Keytruda rep is making noises.

    Jim told Dr. K that he didn't want to switch to Keytruda, because he knows Opdivo, and it's working. Dr. K reassured Jim that he will not take him off of Opdivo. He also told Jim that he's had patients on Opdivo for a year.

    Dr. K said that I'd told him on the phone that Jim doesn't have any other symptoms, beyond yawning initially after infusion, fatigue, and occasional RA pain, which is mitigated by low dose steroids. Jim confirmed that to be so, and Dr. K said, "That's great! May it continue to be so!"

    Dr. K also praised Jim for his "excellent vitals and blood work."

    PROUD OF EACH OTHER

    When Jim called me before his infusion, I told him how proud I am of him for his courage and bravery in fighting cancer. He doesn't complain, he pushes himself to keep going, and he has a strong will to live for me and Jon.

    Jim replied that he is proud of me for "soldiering on" through it all, for my dedication and devotion to him and Jon, and for helping him make decisions.

    "We're a team," Jim said. "A great team."

    Every day, I think that I couldn't possibly love him more, and still I do.

    Thank you all for continuing with us on our journey, for your prayers, thoughts and positive, healing energy, and for being here to support us.

    We love you, and you are all 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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  9. #495
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    Hi Rose,
    I am going to see my Mom next Tuesday and flowers/card will arrive on Sunday. My sister and her family will go on Sunday. I hurt my back so can't make the drive on Sunday - Nick is coming over here so I will have my mother's day visit at home. For my Mom, we are making it mother's day week! I'm so glad that Jim is doing so well. This is all good news and the doctor's authentic delight at the test results is a good indication that things are going absolutely in the right direction.

    I know Angel Michael is looking down on you Rose - no, that's not right. He's beside you. The spirits of those we are closest to are never far. I still feel my Dad who passed away in 1975 and my best friend who took her own life in 1984. Having video and photos of them helps me feel their presence too. I'm so lucky that we have home movies of me with my Dad.

    Sending much love now and on Sunday - Happy Mother's Day Rose!
    xoxo 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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  11. #496
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    ((((((Donna)))))) ~

    I'm so sorry that you hurt your back! Sending healing prayers that you recover quickly.

    Oh yes, Michael is always near. This week he sent hawks to visit his garden and bathe in the waterfall. I don't believe that it's a coincidence that hawks and egrets visit his garden around the time of special occasions, like holidays, birthdays and his angelversary.

    Home videos are both wonderful and painful for me. I generally cry through all of them and feel a deep aching to hold Michael in my arms again. Part of me left with him, and while we are profoundly connected spiritually, physically, I feel that vacancy, and it hurts.

    I'll be thinking of you Sunday and praying that you, Jim, and Nick have a wonderful visit.

    HAPPY MOTHER'S DAY!

    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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  13. #497
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    Hi Rose, We had a lovely visit with Nick and we skyped my Mom. I'll visit her on Tuesday. My back is feeling better (yay) and I have a massage tomorrow so I think I'll be fine by Tuesday for the 3 hour drive to Montreal to see Mom. I also had a long skype chat with Natalie and that was lovely too. I am so happy for you that Michael visited - I remember every year that you have said his spirit reveals itself in a bird or other creature in your garden. It is the most remarkable thing and such a tangible sign of your loving connection. Mother's Day for you must be so bittersweet. Sending much love and gentle hugs. xoxo 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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  15. #498
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    ((((((Hugs to All)))))) ~

    Donna ~

    So glad that you had a nice Mother's Day, visiting with Nick and Skyping with your mom and Natalie. Hope all goes well tomorrow. Safe travels!

    MY MOTHER'S DAY

    As usual, after an Opdivo infusion, Jim woke up Sunday with RA pain. He took 20 mg Prednisone (as opposed to his 5 mg maintenance dose) and slept for 7 1/2 hours.

    While he and Jon slept, I worked in the office sorting bills and notices. That's when I discovered a notice from the phone company that I hadn't paid the bill in April, and if I didn't pay by Weds., the phone would be disconnected. It's 15 days late, but AT&T was going to cut off our phone!

    In searching for the phone bill, I discovered my Medicare bill, also due in April! Ack!!

    I had set these two bills aside when I was preparing our taxes, and obviously forgot them.

    Then, in new unopened mail, I found a notice from Regional Center stating that I had not provided our homeowner's insurance evidence, which was due in October 2017! I thought I'd taken care of that, but as I rummaged through my files, I realized that I had not sent it. I had a deadline of 1 week to send in the document, or we would lose Jon's program.

    In addition to that, the Regional Center website has had a problem, and I've tried for a week to fill out my invoice for April to no avail. It is due Tuesday.

    I am an organized, detail oriented person, and our office is chaos these days, with stacks of stuff on the floors, because I've run out of filing spaces. Finding all of these glitches increased my stress level to TILT! By the time Jim woke up, I was spinning.

    I was already sad and depressed, as I always am on Mother's Day missing my precious Angel Michael. I began ranting to Jim, "Why are all of these things happening and all at one time, each one threatening something we need? Why do you have cancer? Why does Jon have so many problems? Why is Michael gone? Does God hate me?"

    Before he could respond, I burst into tears, ran downstairs and out to Michael's garden. Even there, I couldn't find comfort, because our yard is barren dirt, our flowers are sparse, the gardeners killed the trees that were behind his waterfall, so they're gone. It's bleak.

    Our house is being eaten by termites. The interior is unfinished since we started remodeling in 2000. We haven't had a floor in our kitchen for 10 years. It's just the concrete slab with a old cheap linoleum, which doesn't even go to the thresholds, over it. I want to put dynamite in our bathrooms. We have earthquake damage from the 2014 quake (we live on the fault line, of course). Exterior needs painting. It's endless.

    I look at our life, and all I see are broken pieces everywhere. Jon's problems are worsening. Jim is fighting for his life. Michael is not here with us. Our house is falling apart.

    My job is to pick up those pieces and glue or duck tape them together. To keep Jon alive, to keep Jim alive, to keep the plants alive, to keep the home and our business alive, to keep me alive.

    I had an overwhelming feeling of failure.

    Jim comforted and reassured me, and he tried to convince me that everything would work out just fine, because "you're on it."

    I laughed, "If I was 'on it,' we wouldn't be in this situation!"

    HOW IT TURNED OUT TODAY

    I paid the phone bill over the phone, with an automated system, by credit card. I also paid May's bill.

    I emailed our insurance agent, and he emailed me the proof of insurance. I called Regional Center and explained that I thought I'd sent this document, but it will be in the mail tomorrow. She assured me that the program will continue.

    I mailed payment for my Medicare (past due) and Jim's (early). I thought about calling Medicare, but I knew that if I called at 9 a.m., I'd probably be on hold until 5 p.m.

    I called the Regional Center internet assistant, and she walked me through the invoice. It took 4 tries, but I finally submitted it. I asked her to encourage those in charge to fix the problem, so I don't have to go through this next month.

    I called the nursing agency pharmacy, which provides Jon's formula, and asked to have two AMT clamps for the tube sent by mail. The assistant said that a driver would be in our area today, and he dropped off a box of clamps. This is to prevent the formula spike from dislodging from Jon's G tube port, thereby causing a leak and Jon laying in buckets of formula. His AMT clamp broke at 2 a.m. Saturday. Of course.

    Jim was right. Everything worked out today, and I am relieved.

    JOHN'S UPDATE

    John visited today to turn Jon. He texted me yesterday and said that Jon and Michael are "very lucky to have you as their mom." I'm sure you can figure out how much I needed that!

    His mother has a problem with spinal fluid reaching her brain, and she will have a procedure of some kind this week. He's vague on the details, because he gets everything second hand from his sister.

    I need to get a video of Jon and John together. Jonathan just glows when John walks into his room. And where Jon may resist me or Jim, he complies with John in every way. Jon was particularly chatty with John tonight, and they were laughing. It is beautiful. And a blessing in all respects.

    Love is everything.

    Jim apologized to me that my Mother's Day was so stressful and sad. As he was hugging me, he said, "I wish I could have made this a really nice day for you."

    I kissed him and answered, "You'll have another chance next year. I want roses and chocolates."

    Jim smiled, "Done."

    Thank you for listening, for your love, prayers, support, and friendship.

    Today is another day ... and we move forward ...

    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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  17. #499
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    rose - Good luck and blessings to your Family.
    Skypilot Steve

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    Rose, My heart breaks for all your family is going through! I wish I could help. I'm glad in the end you got it all sorted out. But wow what a lot to think about and worry about. I've had my faith shaken many times but I always come back to it somehow. Sometimes you just have to run and cry and scream!
    I agree with John Your boys are very lucky to have you as a mom! You and Jim are so very lucky to have each other also. Chocolates and roses sound perfect for next year! Kathleen gave me a rose bush I'm going to plan outside. She LOVES giving flowers. Whenever it's someones birthday (and she doesn't forget a birthday) she picks out flowers.
    I'll be sending extra prayers for you and for John's family.
    Mary Grace

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