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Thread: A Prayer Request For Jim

  1. #61
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Marcie ~ thank you so much for your prayers.

    The port site is uncomfortable and aching for Jim, but he is managing well without pain meds.

    Jim's appointment with his oncologist today was revealing in many ways. It appears that we are hoping for long-term survival versus a cure now.

    Chemo begins on Weds, with 5 hours of infusion. Thursday, 2 hours, Friday 2 hours. We have plenty of meds to combat nausea and vomiting, the likely side effects of chemo. We pray that they work.

    Jim's red blood cell count is quite low, so that may be an issue for him through treatment. A blood transfusion may be in his future.

    Meanwhile, Jon is coping with seizures and insomnia. I'm still working on getting an aide to help me turn Jon once a week. An aide called today to offer giving Jon a shower. Clearly, they don't understand Jon. So I called the nursing agency, and we're hoping to find an aide, who can provide us with the assistance we need.

    We are endeavoring to maintain a positive attitude, to trust and believe that all things work out as they should.

    It's a challenge. But we know that it is the only way to approach all that is happening now.

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

    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. #62
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    Rose, I'm so sorry that the port is uncomfortable and that they are only thinking long term survival now. Please tell Jim not to feel like he has to push through pain. If he needs pain meds at any point please use them! As for the low blood count, one of my best friends had that a few months ago and internet searched "best foods for anemia" and was able to bring the blood count back up. One of my relatives was also given a shot years ago that helped them produce red blood cells so the infusion wasn't needed. Perhaps you could see if something like this is possible for Jim??
    I hope and pray Jon's seizures stop and you get the help you need. Praying Jim proves the doctors wrong in so many ways and does better than anyone thinks! Love to you all!
    Last edited by funnylegs4; 02-14-2017 at 07:37 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  5. #63
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    Rose, I have had you and Jim on my mind and came here today to find out what is going on. As funnylegs said, Doctors are often wrong and let's still hope for a better cure rate rather than survival rate.

    I hope that you are able to keep your on strength up.

    We are all thinking of the 3 of you.
    Virginia

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

    funnylegs 4 and Virginia ~

    Thank you so much for your prayers, positive thoughts and healing energy. It means so much to us and truly helps us.

    It is normal for the port site to hurt for at least 10 days. Jim isn't even into a full week yet. And it is quite bothersome for him. It's a foreign object in the body, and the body is saying, "Nope." Eventually, it will heal, and that discomfort should dissipate.

    We are certain that Jim's oncologist will do everything she can to shrink the tumor and kill the cells in the pleural wall, which are feeding it. Tomorrow's infusion will be 2 different chemo drugs. Plus Zofran for nausea, a steroid, and Benadryl to ward off allergic reaction. Because one of the drugs is hard on the kidneys, Jim will have 2 hours of IV saline, before the fun begins.

    On Thursday and Friday, he will not receive that drug, thankfully. His infusions then will last about 2 hours.

    We have faith that his oncologist is one of the best in the area, and she knows her stuff. Initially, she told us the goal was cure, but after reviewing all of Jim's test results, she has gone to the second goal of longevity. While we hope and we pray for a cure, we have to be realistic and prepare for the second goal.

    Jim is eating lots of protein with yogurt, Quorn, soy "meat alternatives," Field Roast, and eggs. He's also eating lots of veggies and fruits. Drinking lots of water. And he likes his pomegranate juice!

    He's trying so hard to eat more often, less quantity, because he knows this is key to his success. It's challenging, when all he wants to do is sleep. And when his appetite isn't what it once was. He's inclined to eat a big meal and then not be hungry again for a long time. We are breaking that habit now, because smaller meals several times a day is best for chemo nausea.

    We knew nothing about what to expect tomorrow, so I called the infusion nurse, who gave me the lowdown. She said we were supposed to have a class called, "Chemo Teach," prior to starting chemo. We didn't.

    With all of our experience in ICU with our boys, and my lifetime of dealing with their complicated medical issues, it might seem that we should know these things. But we have gone through Jim's biopsy, all of his tests, and now chemo completely blind as to what to expect.

    Learn as you go ... not that comforting or reassuring, I guarantee.

    Jon's seizures have abated with our dosage increases on his meds, and he's slept for 10 hours today and yesterday. So, he's better, thankfully. Still gigantic with fluid (weighs close to 200 lbs by estimate of our friend, who turns him). Thanks, lymphedema.

    Please send all of your powerful prayers and good vibes to Jim tomorrow that he can handle it and that his side effects will be minimal to none. (I'm dreaming, but it doesn't hurt to ask for the moon and land on the stars.)

    We love you and give thanks for your friendship and love 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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    Continued prayers for all of you. Chemo can be tough but both my Dad and step mom drove themselves to their appointments and home again. Both had lung cancer. Surprised me. They refused help. Part of their "fighter" mindset. Hope Jim does as well.
    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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    Continued prayers being sent for all of you. Hope Jim's first round of chemo went okay.

  9. #67
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    ((((((Hugs to All)))))) ~

    Tamie & Marcie ~ Thank you so much for your continuing prayers.

    They are working! Jim slept for 10 hours last night, with no side effects from Chemo.

    He had his second, shorter chemo today, and he's feeling fine. Whether this will last, we don't know, but we're doing everything we can to make it last.

    Jim wants to drive, and thinks that he can drive. But our friend and I know that it's best that he doesn't drive. Jim capitulates to our pressure!

    All things considered, Jim is doing quite well through his first round of chemo. We pray that this continues to be so for him.

    We thank all of you, who are praying for and sending positive healing energy to Jim and our family.

    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. #68
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    SO GLAD Jim is reacting well to chemo! If he ever has side effects demand that they are dealt with so Jim is comfortable. Why are you worried about him driving exactly?? Just curious. Thanks for the update and a huge boatload of prayers coming now!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  12. #69
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Don't worry, I'm pretty good at requesting assistance from the medical community.

    Our concern about Jim driving is multi-faceted. Jim is extremely fatigued from the cancer, anemia, and chemo. Before he gets his chemo infusion, he is given Zofran, which has drowsiness as a potential side effect. His reflexes are a bit slower. His mind is fuzzy sometimes (not uncommon with cancer and chemo).

    He is weak in some respects, and we have a huge raised roof van, with 2 steps to climb into/out of. Miss a step, kerplat! on the pavement. Jim is thin, bony, and fragile, so if he falls, something is bound to break. We can't have that.

    For his safety, our friend and I agree that Jim should be transported. Thankfully, our friend, who is wonderful and also helps me turn Jon, has a flexible schedule and lives very close to us.

    Yesterday, I said to him as we were turning Jon, changing his sheet, etc., "You don't know how much I appreciate all you're doing for us."

    He replied, "I think I do. You tell me a dozen times, every day. And I know how much this means to you and Jim and Jon. And frankly, it makes me feel good to be here with you, to help you. If everybody could just help another person in need, the world would be such an incredible place."

    Another friend of ours, who is in remission right now, has been guiding us through this journey. She said that the steroid given via IV on the first chemo treatment left her feeling like she could paint her house for 2 days. On the 3rd and 4th days, she crashed. So, that's likely what is going on with Jim.

    He's also tired, because his sleep is interrupted every couple of hours to go to the bathroom. He has had to step up his water intake. He's getting at least 64 oz/24 hours, but 80 oz is recommended for chemo patients. I don't think he'd ever sleep if he was drinking 80 oz.

    Plus one of his tests revealed that his prostate is enlarged, and he's not allowed to take Saw Palmetto during chemo. So, that's not on board to help slow doing the potty visits.

    The importance of water can't be overstated. It flushes out the toxins and keeps the kidneys, liver, bowels functioning. Moreover, it is one of the preventatives for chemo neuropathy.

    When all you want to do is sleep, it makes it challenging to get in enough nutrition and water to meet the daily requirements. We are trying, and he's eating healthy, nutritious, high protein meals, plus snacks. He gets full more quickly.

    Jim is scheduled to see his oncologist on Thursday, and as far as we know, she hasn't scheduled more chemo for him. We have to check in with her tomorrow to find out what's going on.

    Thank you all for your prayers, love and support!

    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. #70
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Don't worry, I'm pretty good at requesting assistance from the medical community.

    Our concern about Jim driving is multi-faceted. Jim is extremely fatigued from the cancer, anemia, and chemo. Before he gets his chemo infusion, he is given Zofran, which has drowsiness as a potential side effect. His reflexes are a bit slower. His mind is fuzzy sometimes (not uncommon with cancer and chemo).

    He is weak in some respects, and we have a huge raised roof van, with 2 steps to climb into/out of. Miss a step, kerplat! on the pavement. Jim is thin, bony, and fragile, so if he falls, something is bound to break. We can't have that.

    For his safety, our friend and I agree that Jim should be transported. Thankfully, our friend, who is wonderful and also helps me turn Jon, has a flexible schedule and lives very close to us.

    Yesterday, I said to him as we were turning Jon, changing his sheet, etc., "You don't know how much I appreciate all you're doing for us."

    He replied, "I think I do. You tell me a dozen times, every day. And I know how much this means to you and Jim and Jon. And frankly, it makes me feel good to be here with you, to help you. If everybody could just help another person in need, the world would be such an incredible place."

    Another friend of ours, who is in remission right now, has been guiding us through this journey. She said that the steroid given via IV on the first chemo treatment left her feeling like she could paint her house for 2 days. On the 3rd and 4th days, she crashed. So, that's likely what is going on with Jim.

    He's also tired, because his sleep is interrupted every couple of hours to go to the bathroom. He has had to step up his water intake. He's getting at least 64 oz/24 hours, but 80 oz is recommended for chemo patients. I don't think he'd ever sleep if he was drinking 80 oz.

    Plus one of his tests revealed that his prostate is enlarged, and he's not allowed to take Saw Palmetto during chemo. So, that's not on board to help slow doing the potty visits.

    The importance of water can't be overstated. It flushes out the toxins and keeps the kidneys, liver, bowels functioning. Moreover, it is one of the preventatives for chemo neuropathy.

    When all you want to do is sleep, it makes it challenging to get in enough nutrition and water to meet the daily requirements. We are trying, and he's eating healthy, nutritious, high protein meals, plus snacks. He gets full more quickly.

    Jim is scheduled to see his oncologist on Thursday, and as far as we know, she hasn't scheduled more chemo for him. We have to check in with her tomorrow to find out what's going on.

    Thank you all for your prayers, love and support!

    Love & Light,

    Rose
    Thanks so much Rose. I understand now. I'm sorry about his prostate. :( Keep making him drink since chemo itself is toxic. Prayers for continued healing and some good sleep for 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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