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    jennjd00 posted an update

    My brother went home to be with Jesus at 5:20am this morning.

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    jennjd00 asked a questionLeukemia

    Thanks and more questions

    • LisaLathrop's Avatar
      LisaLathrop

      Do you have a laptop, iPad or such? if so, sign up for an account at www.caringbridge.com. The messages from outside people who pray, care, love, and send well wishes was a Godsend to me. Also, even though visitors still need to "dress up" to come into his room, invite his friends, neighbors, kids, grandkids, etc. You husband sounds like he is in dire need of good conversation and company to take his mind off the obvious difficulties he is having. Short visits are best...but indeed will do the trick. How are YOU holding up? Be sure to get time to yourself, even if it is a short walk in the halls and by all means....get into a SUPPORT group. Many hospitals hold them regularly (mine does every Thursday - and I still go back to offer support to those who are struggling the way I did) - ask your nurses or PAs. God Bless and keep searching for the answers to make your patient realize that there are so many more people out there who are worse off then he is. STAY POSITIVE!

      over 5 years ago
    • Peroll's Avatar
      Peroll

      Does he have an iPod or MP3 player? A little music or an audio book may help him pass the time. When in the hospital I spend most of my time with ear buds in so I dont have to listen to the other noises and it helps in getting rest. Good luck and we will say a prayer for him and for you.

      over 5 years ago
    • jennjd00's Avatar
      jennjd00

      We have all the electronics but he just has not interest in watch TV or movies etc. I did get him some old time country music cds and we do play them and he just lays there and listens or falls asleep. I do have a caringbridge account for him. I try to crack jokes and bring happy memories to him when I am there. I keep trying different things I guess that is all I or my siblings can do to help him. We just keep trying. Thank you both for you great suggestions :)

      over 5 years ago
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    User: carm

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    jennjd00 asked a questionLeukemia

    anxiety

    7 answers
    • GregP_WN's Avatar
      GregP_WN

      My father was just like that, except maybe a little more on the delirious side. He was so ill he didn't really know why he was there. But he was trying to crawl out of bed, wanted his shoes and pants, and one time was walking down the hallway when we had stepped out for a few minutes.

      How old is your brother? I think your doing the right things trying to keep him occupied. Maybe kick it up a notch and have more things for him to do, and more people to come see him.

      I hope he gets out soon.

      over 5 years ago
    • LisaLathrop's Avatar
      LisaLathrop

      Hi again. This just came across my email and I thought I'd share (I "cut & pasted")

      Tip #3 - How To Put Joy Into Your Life Everyday

      One challenge for cancer survivors is moving from being reactive to cancer to becoming proactive towards living.

      Tip #3 - How To Put Joy Into Your Life Everyday. What if you could have it every day, not just when you’re feeling great or during holidays and other special times? What if joy wasn’t just a word on a greeting card but instead a feeling inside you? And what if it had nothing to do with the circumstances of the day, month or year.

      So how do you find joy? And how can you put it into your life?

      Setting goals helps. Creative projects like vision boards, wish lists and visualizations are a strong first step. Every great story begins with a thought, idea, theme or thesis. But then the author must dive into developing the main character, which involves understanding their motivation and core values.

      Whether it is a screenplay, short story or novel, the writer must eventually create the ou tline of the journey the main character will experience and the steps and stops along the way of arriving at the destination. Without this, the story simply remains an idea in the writer’s mind.

      If joy is a state of being you wish you had more of every day, it will remain just that...a wish or a longing for. To truly experience joy daily, you must move it from an ideal or vision by taking actions to create it.

      Source: www.wellbeyondordinary.com
      A great source that might be useful to you and your husband

      over 5 years ago
    • jennjd00's Avatar
      jennjd00

      First of all thank you all for your responses and genuine concern. God Bless you! My brother's case is a little difficult. He has VRE, he also has Miltonic Dystrophy. They have been unable to get his bone marrow back up, or his WBC back up. He is really not allowed out of his room due to the VRE. In fact when we all visit we have to put robes, gloves and masks on. He still does not eat much as they have to give him Chlorhexadine mouth wash to help him not get mouth sores and this makes food taste bad to him along with all the antibiotics they give him, his stomach gets queasy very easily. His muscles are very weak from his MD and now being ill from chemo etc. I am just so concerned, I want to help but am at a loss. he needs something other than cancer talk, death talk, medication discussions etc. What bit of life, or light can I be allowed to bring into his room he cannot leave? I know he must feel like he is in prison. Not to complain myself, but, he is my twin brother and I am his twin sister. This is so difficult and I just do not know what to do anymore. Can the American Cancer Society do anything to help us?
      I am so sorry for rambling on like this. I just know you all are so helpful and I so appreciate it. Thank you again and God Bless.

      over 5 years ago
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    jennjd00 asked a questionLeukemia

    I am upset and concerned if my brother takes treatment or if he decides not to. I just want him to make the right decsion. how can I help?

    7 answers
    • JoLoaretti's Avatar
      JoLoaretti

      it is his Life, his choice, but information given gently often can help, dont force anything, but you can give your opinion just notice if it feels like he wants it, if it feels forced back off. often so many things are lost while battling cancer, virility, manhood, one of the only things they get to keep is their own decisions. good luck

      almost 6 years ago
    • Jo96822's Avatar
      Jo96822

      My mother faced a similar decision last month as to whether to stop treatment or continue. She was told that her only option was a stem cell transplant and there were quality of life issues. My father and brother told her that if she stopped, it would be similar to giving up. But, I told her that as much as I would like her to continue the battle it was ultimately her choice. I can't imagine what she is going through. However, I wanted her to know that whatever her decision, I would support her. Sometimes there is so much information it is overwhelming. It was helpful that I went with my parents to their "decision making" appointments where the information was provided about their options. We would "sleep" on it and then discuss what the journey would be like if she made certain decisions. I noticed my mother and father sometimes would shut down and not listen to the doctors after a certain point perhaps because of fatigue or news that they didn't want to hear. It helps to have another person in the room to ask the questions and remember what was discussed. He will make the decision that is the right one for him. I wish you and your brother the best.

      almost 6 years ago
    • jennjd00's Avatar
      jennjd00

      Thank you all so much for you responses. 6 weeks ago my brother entered the hospital and decided to begin his journey with chemo. It certainly has been an up and down road for him and for our family. His RBC continues to be around 0.1-0.2 which I am sure most of you know is very low. He has had brain fog, breathing issues, urinary issues, heart issues. His 2 ports got infected and had to be removed and a PIC line has been put in. He has been in isolation for weeks. I know he must be going stir crazy being in the hospital so long. Does anyone have any suggestions as to how we can get him some help maybe from someone who has been through what he is going through. Perhaps get him in a wheelchair and suit him up and take him for a daily walk through the hospital or something. I just keep thinking what next, what next?

      almost 6 years ago