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Thread: A Prayer Request For Jim

  1. #71
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you for your prayers!

    Of course, I am encouraging Jim to eat and drink water, but at some point, I have to back off, before I become an annoying nag. Jim is struggling with his appetite loss, and he's tired of getting up every 2 hours to go pee. He's frustrated, naturally. And he's utterly exhausted.

    It's all pretty overwhelming for both of us. We're a bit frazzled. Afraid. Wondering what is next, and what will that entail.

    We did find out via a mailing to Jim that his oncologist has sent a sample of his biopsy to a molecular and DNA organization in Arizona, which can identify the specific type of cancer and the best treatment for it. So, we're hopeful.

    Meanwhile, we do what we need to do everyday, with tremendous help from our friends and Jon's nurse (all of whom are family to us).

    And we give thanks for everyone's prayers, positive, healing energy, and loving thoughts for Jim, Jon and me.

    Bless you all ~

    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.

  2. #72
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    Rose, I've been thinking about you and praying that all will be well for your family.... Prayers for peace patience and healing. It all must be so exhausting for you both.I'm so glad you have help from some very kind people you deserve it or sure. I'm glad you're not alone in this journey. Thank you for all the updates. My prayers will continue... Stay strong and stay positive! I'm sure both are tested daily...
    Mary Grace

  3. #73
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    ((((((Mary)))))) ~

    Thank you so much for your prayers and positive thoughts for us. It means everything to us to have your support, and the support of all of our BT family.

    Jim saw his oncologist yesterday. Blood work reveals that his white blood cell count is low; RBC, hemoglobin, and hematocrit are low, as expected, but not significantly, compared to his results prior to chemo. I'm more concerned right now about his WBC, because that could mean infection is looming.

    Jim's oncologist discussed the biopsy sample she sent to the molecular/DNA company. They grow the sample, and then they identify what the organism is and "kill it." She was enthusiastic that the right treatment will be discovered through this testing. This gives us hope.

    Jim is scheduled for another round of chemo March 8, 9, 10. He will likely receive different chemo than his last round, based on the findings of this molecular/DNA lab.

    So far, Jim has fared very well without any untoward side effects from chemo. We are very grateful.

    It's a challenge to keep him well fed, and he's not gaining weight, but he isn't losing. He's been diagnosed as malnourished. But, he is eating lots of protein (vegetarian based), and lots of fresh, organic veggies and fruit, yogurt and flax seed oil (Johanna Budwig protocol for cancer, which Pansy (Liz) followed).

    And, yes, we are very blessed with many loving, helpful friends/family willing to go the extra mile for us. I don't know where we'd be without our friend, who visits 2-3 times a week to turn Jon. On Tuesday, we were going to give it pass, but at 6:00 p.m., Jon's G Tube feeding line separated from his G Tube, and Jon was drenched in formula. I called our friend, who was finishing his dinner, and within 20 minutes, he was here helping us turn and bathe Jon, and holding Jon, so that I could clean his mattress and put on a new sheet. Words cannot describe how wonderful he is, how much Jon loves him as his "brother," and how much we appreciate all that he is doing to help us through this crisis. He is truly a God-Send.

    I'd love to hear the latest update on you, Kathleen and your family. I know I didn't start an update thread for February. Falling behind in some things these days ...

    But please share what is happening in your world. Start a new thread or post here.

    Thank you for your prayers, and please know that ours are with you and all of our BT friends always.

    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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  5. #74
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    Hi Rose,
    You're welcome! I completely understand. I have heard of what Jim's doc is talking about. I heard sometimes the treatment does not even involve chemo which would be nice, but not always. I'm surprised they think he's malnourished. That's kind of odd. It's wonderful that your friends are still helping! My prayers continue.

    Here's an update on what's going on with me to brighten your day: http://cripvideoproductions.tumblr.c...e-casting-call I can start the update thread to save you guys the trouble. I think I'll do that now.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  7. #75
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Funnylegs4)))))) ~

    Congratulations on moving forward with your new project. I hope you get many responses to your casting call for "Stroke of Endurance."

    Malnutrition is very common among cancer patients. Jim has Stage IV cancer, so he's even more at risk. Here's some information about malnutrition and cancer:

    http://www.cancercenter.com/communit...-malnutrition/

    Jim has a nutritionist on his team. We need to return her call and discuss options for Jim. Maybe he needs to start eating ice cream! His glucose is elevated, so we are trying to watch the sugar. He needs healthy fats in his diet. I'm making guacamole, his favorite, as one source. But we need more.

    Thank you for your 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. #76
    Distinguished Community Member agate's Avatar
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    Rose, I've had the impression that nutrition is extremely important with cancer--but I don't know that much about it. It just makes sense that if you're fighting a disease, you need to fight it with whatever you have, and one thing you can definitely have is the best nutrition. Experts differ about what's best but certain nutrients are known to be very important. I'm glad there's a nutritionist on board.

    Guacamole sounds like a winner. I put on a lot of weight eating my own guacamole for a while. Avocados are loaded with calories--but so tasty.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #77
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Funnylegs4)))))) ~

    Congratulations on moving forward with your new project. I hope you get many responses to your casting call for "Stroke of Endurance."

    Malnutrition is very common among cancer patients. Jim has Stage IV cancer, so he's even more at risk. Here's some information about malnutrition and cancer:

    http://www.cancercenter.com/communit...-malnutrition/

    Jim has a nutritionist on his team. We need to return her call and discuss options for Jim. Maybe he needs to start eating ice cream! His glucose is elevated, so we are trying to watch the sugar. He needs healthy fats in his diet. I'm making guacamole, his favorite, as one source. But we need more.

    Thank you for your prayers.

    Love & Light,

    Rose
    THANK YOU SO MUCH!!! I really appreciate it!!! I could use all of the hope I can get with this project! I got 2 responses so far but I need a LOT more.
    Thank you for the nutrition link as well. The glucose levels don't surprise me at all. Tumors feed on glucose which may explain the imbalance. There are brands of ice cream that don't cause a blood sugar spike…I think. You just have to search for them. If you go on websites for diabetics it might have information on foods for gaining weight that don't cause blood sugar issues. Guacamole will do it! Prayers continue!
    Last edited by funnylegs4; 02-27-2017 at 07:35 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  12. #78
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    ((((((Hugs to All)))))) ~

    agate ~

    We are vegetarians, so we eat a healthy amount of fruits and veggies ~ all organic. Protein is stressed as a dietary need for cancer patients. Our sources of protein are Quorn, soy, legumes, eggs, yogurt, cheese, cereals. I'm hoping to find some full fat yogurt when I go to the grocery this week, as most yogurt, while high in protein, is low in calories.

    I need to find an opportunity to call the nutritionist. Jim and Jon sleep most of the day, and when they wake up, I have to do all of my cleaning and laundry, which would disturb their sleep. After being up for a few hours, Jim goes to bed in the evening and usually doesn't get up until 2 a.m. Jon's almost always awake then, so I use that time to clean and do laundry too. I get to bed at 3 or 4 a.m. I am permanently sleep deprived, which as we all know isn't a good thing. But I have no choice.

    funnylegs4 ~

    It's early yet in your search, so don't despair. More candidates will appear. Are you on social media? It might help to spread the word on Twitter, Facebook, Instagram (I'm not on social media, but those seem to be the most used.)

    Jim's glucose level was normal prior to chemo, so clearly, chemo has affected it, as it has his WBC, RBC, etc.

    Jon's nurse has an avocado tree in her backyard, which produces the most wonderful avocados. She had it trimmed last year, and it was dormant, but it should produce a lot this year, so Jim will have the best avocados available.

    Thank you for your prayers and support. We are grateful to all, who are cheering for us.

    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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  14. #79
    Distinguished Community Member tic chick's Avatar
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    hey rose!

    i've been revising my diet for the last 10 years. i prolly eat meat, mostly organic chicken about 2 times a week. once in a while i will make a meatloaf from organic bison meat.

    i've found that full fat coconut milk in cans (or the lite, if you're watching calories), can be used in place of milk in almost all recipes. it has medium chain fatty acids in it, making it a good fat. coconut oil is also on my list of oils. quinoa and farro and wild rice are grains i use frequently, especially in summer when i can make salads, like tabbouleh, with them.

    i'm just going to give you links to my favorite recipes and see if anything looks good to you. i don't know if spicier foods would appeal to jim or if he prefers less spicy foods, but i'm sure you can adjust. i like ezekial bread because the seeds are all sprouted and easier to digest. i make shakes with goat's milk yogurt, which i find is milder tasting and doesn't have the antibiotics and sometimes milk-producing hormones like regular milk. organic cheeses are also showing up in my supermarket more, but are more expensive.

    so here goes with the links:

    http://kristineskitchenblog.com/broc...-from-scratch/ (broccoli casserole)

    https://foodforhealth.kaiserpermanen...prclt-dKr1Pwzk (lentil soup with spinach)

    http://www.healthy-holistic-living.c...ng.html?t=ONGR (cauliflower stew, good with pita or naan bread. i've seen organic pita, but not organic naan).

    http://www.thewannabechef.net/2011/1...umpkin-quinoa/ (i use red peppers because green keep coming up on me).

    http://casserole.cooktopcove.com/201...d&k=lgvpdus020 (one of my faves, but i skip the jalapenos, unless you reallly love them. i also lowered the flour to 2 tablespoons, because 5 seemed like an awful lot of thickening. it turned out fine. i watch this and wait until the top starts turning a light brown, sometimes it takes 10 minutes longer in the oven).

    potato salad with organic mayo and egg salad are also some of my faves. i also make my own almond butter and sprinkle flax seed meal on top of ezekiel toast and almond butter for breakfast. i was on the fence about peanut butter, i buy organic, but it seems the peanuts are just too strong flavored a nut. at a store i saw peanut butter mixed with coconut oil (solid at room temp), in a 4:1 ratio. i tried it and was amazed how much nicer the peanut butter tasted. i think stonyfield makes a full fat yogurt.

    i'm keeping you in my prayers and God is sending you some wonderful people to help. it makes me feel better about this world.

    thank you for sharing,
    jeannie
    Last edited by tic chick; 02-27-2017 at 09:13 PM.
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  15. #80
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    ((((((tic chick)))))) ~

    Thank you for your recipe links and for your prayers.

    Jim uses coconut spread (made with coconut oil) and uses coconut milk for his cereal (and I use it in cooking ~ pancake mix, mashed potatoes, sauces, etc.). He's not fond of almond milk, but I know that is a good source of protein and good for the heart.

    Jim is British, so he's a fan of Indian food. Whether it's good for him to have spicy foods now is questionable. So we're shying away from it. He's been asking me to make tacos recently, so we'll see if he can handle that spice, which is milder than Indian spices. On the other hand, Indian spices have many health benefits.

    Thanks for reminding me about potato salad. This is one of Jim's favorites. I usually make it frequently in the Summer. I also use Veggie Mayo (and Gray Poupon), and I add sliced boiled eggs.

    One of our alternate meat options is Field Roast. Lots of delicious high protein choices there, as long as our stores carry them, which is never guaranteed. I shop at three different grocery stores to find the foods Jim likes and needs.

    I have very little time to cook, and a short window to do it, while both Jim and Jon are awake. I can't be rattling pots and pans and chopping veggies, while they sleep. Given those constraints, as well as my level of exhaustion and inability to stand on my feet longer than an hour, I do the basics. In the end, we have a nourishing meal, with many colors represented, the highest protein possible, and the goodness of the organic foods we consume.

    Oh, and Jim does not like quinoa. I don't know why, since he loves rice. Quinoa is a super food, like chia seeds, and flax seed oil (which Jim is taking every day with yogurt).

    Tonight, after being in bed and coughing for an hour, I asked Jim what we could do to relax his cough and help him get to sleep. He asked for canned peaches. And sure enough, they helped.

    I'm going with whatever Jim requests or needs. If he wants pancakes, he gets them with strawberries, blueberries, banana, maple syrup and coconut butter. All organic. If he wants an omelette, with mushrooms and cheese, fried tomatoes, and baked beans, that is what I arrange on his plate as artistically as I can manage. Presentation is important to increasing appetite.

    Every day is an adventure in Cuisine Land.

    Thank you again for your recommendations, Jeannie.

    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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