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Thread: A Prayer Request For Jim

  1. #31
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    I have no words Rose, just gentle hugs for you and Jim. We've dealt with cancer and know all the uncertainties you are experiencing. Thoughts and prayers on this journey. Know you are not alone.
    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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  3. #32
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    Rose, both you and Jim have great strength, that and your love and God's Grace will carry you through this.

    You both can do this!
    Virginia

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  5. #33

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    Dear Rose,

    I have no words but I will continue to lift you, Jim, and Jon up in prayers and positive thoughts.

    Marcie

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  7. #34
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you so much for your love, prayers, and positive thoughts for us. I just can't convey to you how much we appreciate your support.

    Jim received a message today about his preparation for his PET scan. He can only eat eggs, meat, and cheese, prior to the scan. We're vegetarians, so meat is out. Jim doesn't eat much cheese, because it congests him and isn't good for RA. So eggs it is. He'll be clucking when he gets to the exam.

    Apparently, Jim is looking at 2-3 hours for this PET scan, as he has to wait for 45-60 minutes after being injected with the radioactive agent. He is going to be so exhausted after this, because these are his "waning" hours of the day, with bedtime close to 6 p.m. Appointment is at 1:30.

    We ordered a wedge for Jim to use in bed, and it arrived today, just in time for him to go to bed. He said it felt wonderful, and he thought he'd be able to rest and sleep with it. Just as I wrote that, he called to me to ask for a banana and glass of water. He's having trouble falling asleep. But he is more comfortable and upright.

    Today, we received a letter from Jon's new IHHS case manager. She scheduled his assessment for 2/10 at 10:30 a.m. When I talked to her on the phone about a week ago, I told her that Jim has cancer, and we don't know what will be happening in the next few weeks. Jim is Jon's Authorized Representative for IHSS (I can't be, because I'm the Provider ~ and his Mother). So Jim has to be at this assessment to sign all of the forms.

    I asked her to schedule for the afternoon, because Jon is not awake in the mornings. I told her that I've requested for over 20 years to have these assessments in late Spring or Summer, not during flu season. It's in Jon's case file, I've been assured by previous case managers.

    Jon has been an IHSS recipient since 1986, as was Michael until he passed. I have never defrauded this program. Why can't they just respect that we're having a crisis and give us some time? (I know ... State Audits)

    Does any of that matter to her? Evidently not.

    More bureaucracy and red tape, because this program is so overloaded with cases and has a tremendous turnover in staff. The budget for this program is absurd. Recipients fall through the cracks, like Jon, and then they overreact, because they know that they are liable, but they threaten Jon with the loss of his benefits if he, and we, don't comply with their demands.

    Usually, Jon's agencies pull this nonsense on us during holidays. This time, it appears they saved it for when our family is facing an enormous crisis. Timing is everything.

    Tomorrow, our "adopted son" will visit to turn Jon and help me lift him in bed. He is such a blessing. And he does love Jon as a brother and a "buddy." Jon needs this so much right now, and we are so grateful for his help and his connection with Jon.

    Otherwise, I'm going to stuff Jim full of nutritious food, and we'll watch some football and try to relax before the week ahead.

    Thank you for all of your positive stories about your loved ones, who have survived cancer. This gives us tremendous hope. I cling to the fact that through all of this, Jim maintains excellent vital signs. His color is even improving. His weight is stable, and while we wish he'd gain, at least he isn't losing weight.

    Thank you for your love and prayers~



    Love & Light,

    Rose
    Mom to Jon, 47, (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. #35
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    Hi Rose,
    Glad to hear Jim is still doing well. You're welcome! Thank you so so much for the update! Sorry about IHSS. That's awful. I told my mom about you and Jim and she said that for someone with Cancer like Jim it would be great for his recovery if he could take a supplement called "Balance Of Nature". The ads are always all over the radio where I live so maybe you have heard of it. For someone with cancer the ideal dose is 9 capsules per day. The supplement gets rid of the substances in the body that help the tumor to grow i.e free radicals. Of course check with Jim's doctor first to make sure it would be appropriate. If its not the right thing just forget I brought it up but just wanted to pass along the idea. Prayers from me and my family!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  11. #36
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    Rose thank you for the updates! I wish I could do so much more but please know I will be sending the warmest hugs and strongest prayers for you and your family. Keep that positive attitude going it means so much to recovery. Staying healthy and strong will help with recovery also. Sorry you have the added stress of red tape! Don't forget to take care of YOU...
    Mary Grace

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  13. #37
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~ Thank you for the suggestion of Balance of Nature. I will check into it and mention it to Jim's oncologist. We take a very good multivitamin, Vitamin D3 (lichens not lanolin), and we're vegetarians, so we eat only veggies and fruit (and eggs, some cheese).

    Mary Grace ~ I'm trying to take care of myself. It would be easier to do that, if this relentless rain would stop. I know it's a blessing for our drought-ridden state, but it has been nearly constant for a couple of weeks. I'm just hoping that it stops tonight, so that Jim doesn't have to contend with it tomorrow, when he goes for his PET scan, and we don't have to deal with it on Tuesday, when we visit the oncologist.

    Thank you everyone for your prayers, and positive, healing energy. We are so grateful to you.



    Love & Light,

    Rose
    Mom to Jon, 47, (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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  15. #38
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~ Thank you for the suggestion of Balance of Nature. I will check into it and mention it to Jim's oncologist. We take a very good multivitamin, Vitamin D3 (lichens not lanolin), and we're vegetarians, so we eat only veggies and fruit (and eggs, some cheese).

    Mary Grace ~ I'm trying to take care of myself. It would be easier to do that, if this relentless rain would stop. I know it's a blessing for our drought-ridden state, but it has been nearly constant for a couple of weeks. I'm just hoping that it stops tonight, so that Jim doesn't have to contend with it tomorrow, when he goes for his PET scan, and we don't have to deal with it on Tuesday, when we visit the oncologist.

    Thank you everyone for your prayers, and positive, healing energy. We are so grateful to you.



    Love & Light,

    Rose
    Rose,You're welcome! My mother says even strict vegetarians like yourselves can benefit from it. Given Jim's health I would give his body as much assistance as you can if I were you, assuming the doctor clears it. Praying for no rain and an uneventful PET scan. Please post another update when you can.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  17. #39
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    Default The Path Before Us

    ((((((Hugs to ALL)))))) ~

    Today, Jim and I met with Jim’s oncologist. We liked her instantly. She is warm, friendly, has a great sense of humor, and is thoroughly committed to healing Jim.

    Going over Jim’s history, she joked, “So before this, you were disgustingly healthy.” We laughed. Yes, Jim was.

    Initially, she said that she’d like to start with immunology before chemo. She said that immunology has less side effects and would be better for Jim so that he could continue to participate as Jon’s caregiver. By the end of our visit, she said that further tests are needed to ensure that the cancer hasn’t metastasized to any other parts of his body. She then said, if so, he might need to do chemo, radiation, and surgery. Then, immunology.

    She referred Jim for an MRI of his brain to determine whether there is any cancer present. He will have that MRI at the hospital on Thursday 1/26 at 9 a.m.

    She also referred Jim to a surgeon and a radiation oncologist. Looks like Jim is getting top of the line care.

    On Tuesday, 1/31, Jim’s oncologist said the team will meet to go over all of Jim’s test results and determine the best plan of treatment for him. The team will meet in the morning, and Jim has an appointment at 3:15 that day with the oncologist, when she will tell him the plan. Prior to meeting with the oncologist at 2:30, Jim will meet with a Nurse Practitioner, who will be in charge of his Palliative Care.

    We know this NP from several years ago, when she was assigned to Jon. She visited once, and every time I called her thereafter, she was either ill with the flu, having her gallbladder removed, or on vacation. She didn’t do much for us. We met her today briefly, and she didn’t remember us.

    On Thursday, 2/2, Jim has an appointment with the radiation oncologist.

    The surgeon’s office will call Jim to schedule an appointment.

    The oncologist discussed the “midline nodules” on his lung and wanted to know if any fluid had been taken and tested on them. Jim thought that they had been tested, but I think the only fluid was the CT biopsy of the mass. She wants to follow up with Jim’s pulmo, who is on vacation right now.

    Some good news: The mass is contained. This would make surgical removal easier.

    The oncologist examined Jim, and she said that his lung sounded good.

    Fattening Up Jim

    She also said, “Jim, we need to fatten you up. I know you’re a vegetarian, so am I. But would you consider eating meat again to gain weight?” She asked us why we became vegetarians, and we answered that Mad Cow Disease started us on the journey, but the hormones and antibiotics in meat kept us on it, as well as our love of animals. “We don’t eat anything with a face.” She nodded with understanding.

    She is referring Jim to a dietitian. But Jim said that he would eat chicken again, if it would help him get through this process. We haven’t had any kind of meat, poultry or fish for at least 20 years. I hope there’s another way. Protein shakes? He was drinking those a few years ago. Orgain.

    I mentioned cottage cheese (and she said, “Yes, that’s fine, if he likes it,” looking at Jim kind of cringing). And I said, “With flax seed oil.” And she said, “Oh, good.” We can switch to Greek yogurt with the flax seed oil. He just needs that kind of dairy to make the Flax Seed Oil work (has to do with solubility and absorption). Thank you, Liz, our angel in Heaven, for teaching me about this protocol.

    THE GOALS

    The oncologist emphasized several times that the goal is “CURE!” We want to get rid of the cancer and make sure it never returns. “But, if we cannot cure it, then the goal is long term survival. And believe me, that is a possibility now. We have many ways of managing cancer, that we didn’t used to have, and strides are being gained every year.”

    Jim and I were holding hands, and I began tearing up. “This is what we want. We adore him and want him to be well."

    She said the entire process would probably take at least 6 months.

    When the oncologist was introducing us to the NP, she said, “We don’t know whether it’s Stage 3 or 4 at this point. We need more testing.” This was the first time she referred to the Stage.

    ABOUT JON

    Jon has been awake 27 hours now, so when I give him his meds tonight, he’s going to get 1 mg Ativan to knock him out. I think Jon is worried about his dad. We explained that Jim has an “owie,” and we told him that we had to see a doctor today to help Jim with his owie. But Jon is a very perceptive guy, and he knows something is wrong. We continue to reassure him that everything is fine, but he knows that if Dad can’t turn him, something is up.

    The oncologist asked about Jon, his diagnosis, his needs and care. She was astounded. “Do you get help? You two take care of him all by yourselves? That’s amazing.”

    She was taking notes about our boys, including Michael, and she was sorry for our loss. Then she learned that Jim is not their biological father. She was even more impressed, as most people are.

    THE PATH AHEAD

    So that’s how we spent Jim’s 69th birthday. At the Cancer Center, learning about Jim’s cancer, the plan, the team, and receiving reassurance that we will be supported in every way on this journey. Oh, we have a nurse coordinator on the team. She’s our “go to” person. We didn’t meet her today.

    We are confident that we have a great team of doctors. Our hospital is fabulous, and everyone there from the cafeteria, the valets, to the nurses, therapists, and physicians, are fantastic, kind, friendly, helpful, caring.

    We are on The Healing Path now. A gathering of experts with knowledge, skill, state of the art technology, and extensive experience will be caring for Jim. In every way, I see God’s Hand in all of this. And I know that Michael is at work for his dad, as he has been for his brother.

    With your prayers, your love, your positive energy, your healing thoughts, and your incredible support, we will follow this path toward Jim’s wholeness and wellness. We will trust in the best and right outcome for Jim and our family. We will be strong, faithful, and determined. We are overcomers.

    It is a lot to fathom right now, so, we’ll just keep taking it one day at time. It’s really all that we can do. And that is enough.

    Thank you all for your love, prayers and support. It means everything to us.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 01-24-2017 at 10:29 PM.
    Mom to Jon, 47, (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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  19. #40
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    Thank you for the long update Rose. I know a life long vegetarian from India who will not touch meat because they think its unclean, who is actually considerably overweight so its certainly not impossible to fatten up on a diet like yours. If I were you I would start by having Jim eat more eggs and if you eat anything that is low fat, start buying full fat foods. Try to find things with good fat like veggies that are naturally more fatty. I would not be surprised if Jon has sensed more going on. Tell him the healing process is well underway which it obviously is with this great doc you found. Happy 69th Birthday and a huge boatload of prayers to Jim!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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