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Thread: Jim's Update

  1. #91
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    Wow! I'm impressed that Jim was able to help turn Jon! That's an AMZING improvement! Prayers Jim gets even better. You are right to warn him not to overdo. I have seen people overdo when sick and it is not pretty. Keep us posted on the infusion please??? I would get a bruise near my tailbone sometimes, sometimes just trying a new position helps a ton.

    Good news, on my end we had film rehearsals and they went rather well!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  3. #92
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    Keeping the strong prayers coming! Think about you every day...
    Mary Grace

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  5. #93
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    Prayers are still being said for all of you. In addition to you and Jim, I am concerned about Jon's wound. I keep thinking of Cat and what she went through, so I hope that the schedules can be worked out to get the wound care nurse in soon. So much on one person Rose - you are amazing.
    Virginia

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  7. #94
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    Continued positive thoughts for the 3 of you, Rose. I'm happy to read about Jim's improvement.

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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  9. #95
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    ((((((Hugs to All)))))) ~

    Thank you for your continued prayers and positive thoughts and healing energy.

    Jim has reduced his steroid maintenance dose to 10 mg/day. He's sleeping like he's been on a bender for weeks (he has, on steroids), and he doesn't want to eat every 10 minutes. Amazing what going from 20 to 10 mg does. Still not having pain. Some residual aches from overdoing, as expected, but he's being more cautious now.

    Jon's been having a lousy couple of days with a lymphedema flare. Belly full of fluid, low SATS, high heart rate, slight temperature, low urine output. He's miserable. It doesn't help that it's been in the 90s the last 2 days. We turned on the a/c yesterday evening, and we all felt cold. And stuffed up. So today, the fans are all going.

    funnylegs4 ~

    Thank you.

    Congratulations on the successful film rehearsals! I'm looking forward to seeing the final result!

    Jon has an alternating pressure, low air loss mattress, specifically for prevention of decubitus ulcers. His wound from 2009 was 5" deep into his buttock and took a year to close up. His wound on coccyx is a deep depression, which we've been watching for many years. His right hip has a rod and pins, and his left hip is gone. So, it's a challenge to turn him, and he cannot tolerate pillows to keep him on his sides.

    It was quite taxing for Jim and me to turn Jon, and uncomfortable for Jon, because we don't have the strong arms and secure hold that John provides. But we do what we have to do.

    Mary Grace ~

    Thank you. I hope that all is well with you, Kathleen and your beautiful family.

    Virginia ~

    Thank you. We're still waiting on our GI doc for the G Tube visit, because that has to take priority right now. When he lets me know when he'll be here, I can schedule the nurses, and John, so that he can turn and hold Jon for the nurses' exam.

    jendie ~

    Thank you. My thoughts and prayers for peace and comfort are with you too, jendie.



    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. #96
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    Sure glad to hear Jim is out of pain and able to function better. Nice to hear. Is the heat causing Jon's lymphedema or making it worse? These guys have to deal with enough as it is. Sure hope this week is better for him.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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  13. #97
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    Sending continued prayers and positive thoughts your way Rose.
    Mary Grace

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  15. #98
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    :) Me too. Did the doctor come to change Jon's G tube? With love, Jeanie :)

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  17. #99
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    Hi Rose,

    Thanks! Here are my 2 newest film posts in case you are interested.
    http://cripvideoproductions.tumblr.c...dent-screening
    http://cripvideoproductions.tumblr.c...pe-rehearsal-1

    So glad to hear Jim is still doing well and is not in pain. Did Jim have more infusions? Oh, now I see what you mean about Jon. I wish I could help. Prayers coming!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  19. #100
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    Thumbs up A Very Good Update

    ((((((Hugs to All)))))) ~

    Thank you all for you continuing prayers, love and support.

    JIM'S NEWS

    On Tuesday, Jim had another Navelbine infusion. All went well. His blood work shows improvement in several areas, including neutrophils, which his infusion nurse described as the "young white blood cells, who are the soldiers against the evil red blood cells."

    On Wednesday, Jim saw his pulmonologist, Dr. H, who has cared for Jon and Michael throughout the years, when they were in ICU (he's an intensivist). First thing Dr. H said to Jim was: "How's Jon?" Bless him ~ he's a wonderful person and an incredible physician. And, he's retiring in about 6 months from his office practice, but will be an intensivist in ICU for another 18 months or so.

    Dr. H told Jim that any improvement, however big or small, is fantastic. The first two rounds of chemo, while not supposed to do anything for him, thus qualify him for Opdivo, actually shrunk the tumor slightly. While Jim was in agony with RA pain after Opdivo, that drug was actually attacking the cancer cells. Now, the Navelbine seems to be arming the neurtrophils, which is exactly what needs to happen.

    When Dr. H's assistant saw Jim, he remarked, "Wow! Look who's buffed!" In January, when Jim last saw Dr. H, Jim weighed 146 lbs. Today, Jim weighs 162 lbs. He looks like his old self now, no sunken eyes, grey pallor, skeleton gauntness.

    Jim has more energy now, and he's doing a lot more things around the house. Jim repaired Michael's waterfall, and now the birds have returned in droves. This is so appreciated, since Michael's 14th Angelversary is on May 30.

    Jim drove to/from the appointment with Dr. H. (John still transports for infusions, because Jim gets Zofran for nausea before the infusion, which makes him drowsy, and the Navelbine makes him a little unsteady on his feet for a few hours.) When he came home, Jim said it felt good to drive again.

    Jim has no pain, which astounds all of his doctors and nurses. Dr. P said Jim is "remarkable," and Dr. H said Jim is "amazing."

    COUNTING OUR BLESSINGS

    We attribute Jim's wellness and improvements to a multitude of factors:

    the treatments he's received; his diet and supplementation with Orgain; his determination, positive attitude and sheer will to live and beat this cancer;

    my caregiving (not bragging, but he has said many times, "I don't know how I'd get through this without you," and that's because a) I adore Jim, and b) I am a life long professional care provider with medical knowledge);

    Jonathan; Michael watching over him;

    the love and prayers from you and all of our loved ones, friends, doctors, nurses, neighbors, our mechanic, our dentist, the list is so incredibly long.

    We are so blessed. We know it, and we give abundant thanks for all of our blessings.

    Please, when you pray for Jim, for Jon, for me, for us, remember those, who are not as blessed as we are with people all over the globe sending positive, healing energy on our behalf. Pray for those, who are alone, abandoned, and have no one to love and care for them. Pray for those, who have no shelter, no clean water, no toilets, no access to health care. Pray for those who aren't as fortunate as we are.

    "The least among us. They are the greatest." ~ Luke 9:48

    JONATHAN'S NEWS

    The lymphedema subsided, thankfully. Now, Jon is peeing like two race horses again. He's sleeping a lot, but when he's awake, he's with us, happy, and smiling.

    Jon and John had fun this evening, when John arrived to turn Jon. Again, a blessing of the greatest magnitude for all of us ~ John.

    I don't know how I hold back the tears, when John arrives, and Jon lights up with smiles for miles for his bud and bro'. John holds Jon's hand, teases him, talks about sports, movies, women ("pretty girls" since Jon has many of them visiting for his health care needs). Nothing is forced, it's all natural, loving adult guys talking stuff. John recognizes that Jon understands everything, so he doesn't talk down to him.

    And, of course, John is helping me and Jim in so many ways. John recently took off our 40 year old front yard water spigot, and replaced it so we could attach our new hose to it. Small things, which are Gigantic to us.

    For Jon next week:

    Tuesday ~ Nursing visit to change Jon's catheter and trache; possibly evaluate wounds.

    Wednesday ~ GI doc will visit in the afternoon to change Jon's G Tube. He called and left a message today and asked me to email him through the health portal, which I did.

    When you pray for us, please give thanks for all of the wonderful medical professionals providing Jon's care. We are truly blessed.

    THANK YOU

    As always, we thank you for you love, prayers and continuing support, good thoughts, positive, healing energy.

    Please know that you are all in our prayers and thoughts too. And we give thanks for the blessing you are in our lives.

    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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