MsC1210

Hello Godfrey and welcome!! Thank you for sharing your story with us. Warmly Christine

Hello Kersherb and welcome I am so sorry you had need to find a site like this but very glad you've joined us. I have some advice, I hope it helps a bit. First of all, Hospice was an absolute God send for us. They were so wonderful in helping us through those last days. They will be there to guide you all through the process and will explain what is happening, etc. (At least that was our experience. I know not all Hospice services are the same quality, I hope you will have the same type we did though) I have shared this piece on here before and maybe it will be helpful for you with your children....This is more geared toward a hospital type event but perhaps it will be at least a guideline. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Q&A: Helping Children of adult Cancer Patients From CancerWise, June, 2005 Should a child visit a parent with cancer in the Intensive Care Unit (ICU)? How do you explain the disease and treatment in a way that he or she can understand? One person who regularly answers these questions is Martha Aschenbrenner, pediatric outreach manager at The Children’s Cancer Hospital at The University of Texas M. D. Anderson Cancer Center. For years, Aschenbrenner directed the M. D. Anderson Child Life Program that provides emotional support to pediatric cancer patients. Now she runs a new program that supports the healthy children of adult cancer patients. Below, Aschenbrenner discusses her role and offers tips to family members on helping children cope. How can family help children of adult cancer patients? Be honest with kids in an age-appropriate manner. This means you will give more information to older kids, but for younger kids it will be shorter bits of information and in a more concrete manner. Tell children: The name of the disease Treatment basics What physical changes might happen How their routine might change What they want to know about death How do you handle questions from children about death? Don’t be surprised if children ask if their parent is going to die (this is normal). Don’t answer that question with any absolutes. Generally, it is best to tell kids, ‘We hope not. That is why we came to the hospital. The doctors and nurses are providing the best treatment and medicine.’ But never promise children that their parent will not die. This is a good opportunity, if they ask about death, to bring up the topic that all living things die, including people. Sometimes when parents are worried about how much information to give their children, I ask if they would rather their kids get their questions answered from the Internet or from them? If a child does not ask questions, is he or she OK? If a child isn’t asking questions, it doesn’t mean he or she doesn’t want information. Sometimes it helps to sit down with children and say something like ‘You know, if my dad was in the hospital, I think I might wonder about ______. I was wondering if you have thought about that?’ There are times that kids are either afraid to ask questions, or they don’t know what questions to ask. And then sometimes, they really don’t have any questions! So just remind them that any question is OK, and no topic is off limits. How do you help younger children understand and cope? With younger children, age 2 to 5, play or books work great. By playing with kids you build a very special relationship with them. Sometimes through play we can visit with kids and find out what they understand or misunderstand about the disease. We can see how they might be feeling. Child life specialists and psychologists alike use play as a way to converse with kids about what is going on. Reading stories gives younger children an opportunity to talk about the illness while relating it to the character in the story… very safe for them. For older children, ages 7 and up, I encourage regular family meetings to discuss the latest doctor visits or any new information. I also recommend keeping a notebook someplace central, so kids can write questions or concerns they think of when parents aren’t around, or that they aren’t quite comfortable voicing yet. It gives them a safe place to communicate their concerns. Should a child be allowed to visit the ICU? At what age? Children younger than 5 are restricted from the ICU because they cannot understand what they will see. Otherwise, it is good for children to have an opportunity to see their parent, especially if the parent may not recover. I prepare children for what they will see in the ICU with the actual equipment. Patients are often sedated and I tell them their parent will look like they are sleeping, but might be able to hear them, so they can tell the parent about their day. I also reassure kids that they can leave the ICU at any time. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ There is a wonderful book, "Wha's Heaven" by Maria Shriver that a good friend of mine used with her grandchildren when her own father died. She was very impressed and said it was a great help. And finally, please keep posting here and let us know how we can help. There is always someone here who will lend an ear or send hugs.. Warmly Christine

Thoughts and Prayers and well wishes for everyone in this latest storms' path. Be safe!! Hugs Christine

Nicloe Hello and welcome. I am so very sorry you and Dustin had need to find a site like this but I am so glad you've joined us. I cannot give you much information about trials etc but I can tell you I have been in your shoes. It was my best friend's diagnosis that brought me to this site a couple of years ago now. You can get some good information in the New Treatments/Clinical Trials forum. Have a look through those posts. Also please read the Good News and Survivors forums. There are lots of great stories to be found in those, as well. I am sure that there will be someone here that can help you out with clinical trial information details. In the meantime please know that we are here for you and we will continue to be here for you and Dustin. Just let us know what you need and we will do our best to help you. Warmly, Christine

I'm not sure if this is helpful or not but it does pertain to fatigue and B12. When I was pregnant with my last baby, I was so tired all the time and in a lot of pain. My OB started me on B12 shots in hopes of relieving at least the fatigue aspect and it definitely improved things for me. Granted this was not cancer related nor was it chemo related but I thought it might be worth sharing. Christine

I was getting ready to start the days lessons with my daughter. I was home schooling her at the time. Some lesson that day turned out to be. We watched the news coverage for days on end. I was also on the volunteer fire dept at that time and had a whole different set of fears to deal with as our dept was on stand by to help with reilief efforts. Still so hard to think about, even 7 years later. God bless the victims and the families. God bless us all.. Christine

Shrimp Thoughts and prayers for you and your family. I am glad that Dad is at home and comfortable. Warm hugs Christine

Ken CONGRATULATIONS on the NED news!! I am so very happy for you!!!!!!! Please know you are in my thoughts and prayers with the impending hurricane. I hope you will not have to evacuate but please be safe!! Warmly Christine

Hi Grimie and welcome. I am sorry you had need to find a site such as this but so glad you have joined us! Please, when you are up to it and ready, let us know more about you and your treatments, etc. It is very easy to fill in your signature/profile and by doing that it will give the folks here more information in order to offer you better advice. In the meantime, please know that we are here for you and will do our best to offer you as much support as we can. Warmly, Christine

Hello Again Amy! Wow, what an uplifting update. I am so glad that you and Dad have such a wonderful doctor! Please keep us posted and let us know how things go.. Continued thoughts and prayers, Christine

(((((Leslie))))) Thinking of you and your parents today. Sending you lots of warm hugs, Christine

Thinking of you today, Jill Warm Hugs, ((((Jill)))) Christine

Hello Jeanne Welcome to the "family". Warmly Christine

Welcome Jackie! I am sorry you have reason to be here but glad you have joined us. I agree with the 2nd opinion advice you've gotten. It does not sound like the doctor your mom has now is very positive or a fighter. It never hurts to have another opinion and might even open more doors and options for your Mom, too. Please keep posting and let us know we can help further! Warmly Christine

Hello Lisa and welcome. I am sorry you and Mom had reason to find a site such as this but so very glad you have joined us! Please let us know how we can help and know that there is always someone here to offer support, advice, and HOPE.. Warmly Christine

Hello Carol Ann., Welcome and CONGRATULATIONS on being a survivor!!!! What an inspirational story! I am so glad you have shared it here with all of us. I am sure your story will be a great source of hope for many of our members here. Please stick around and keep posting! We love happy stories here! Warmly Christine

Shrimp I am so sorry... Hugs and prayers for you and your family, Christine

I am so very sorry about your husband, MaryAnne... Please accept my heartfelt condolences and remember that we will continue to be here for you to lean on. Warmly, Christine

Hello Tear Drop and welcome Please let us know how we can help you and your sister through this and know that we will do our best. Warmly Christine

Maryanne Thanks for the good news update. You and Joel continue to be in my thoughts and prayers. Christine

Watching the weather channel and the "parade of hurricanes" and thought I would bump this just once. To all of the members in the paths of these storms, thoughts and prayers are with you. BE SAFE!!! Warmly Christine

Hello Amy and welcome, I am so sorry you had reason to find a site like this but so glad you have joined us! It sounds like things are being dealt with pretty quickly so far, and that is good! It doesn't make the waiting any easier I know, but come here, read the good news and survivors forums and you will see that there are lots of stories of hope and survival here! I can understand how hard it must be for you not to be able to talk to anyone yet about things.Just remember we are all here and you can talk to us any time you feel the need. The members here are wonderful about sharing advice, information and HOPE. Just let us know what's on your mind and we will be here to help you. Please don't hesitate to come to us with any concerns or questions. Warmly Christine

Hello Kim and welcome I can't answer your questions but wanted to say hello and welcome you to the site. I am sure someone will be along shortly with some answers and information for you. Warmly Chrisitne

Hi Shrimp I am sure that someone else will be along with a very detailed explanation of how to do this but I simply typed out my step dad's history in a blank email, copied it then pasted it in the appropriate area on my profile then saved it. I hope this helps. Chris

Linda The Ensure is a great idea as well as Boost, etc. Calories are key. The nutritionist we saw for my step dad had some excellent ideas for boositing the caloric intake. Simple things like cream soups made with heavy cream instead of just milk, adding extra butter to mashed potatoes and using heavy cream there,too as well as adding shredded cheese. Make milkshakes with the Ensure or Boost, add an envelope of Carnation Instant Breakfast to the milkshakes. There are so many things that can be added. The important factor is to make sure he is drinking plenty of water.. LOTS OF WATER.. AND MORE WATER! Dehydration is not fun, it is very painful and can be dangerous. I am so glad that you have your daughter in law to help you out. That will be such a blessing for you! And as far as the wedding? Use that as a positive event to focus on. A goal of sorts. It might be just the ticket to get Jim focused on something other than the pain once the doctors can get him on the right meds to get that in control. Keep posting!!!! Hugs Chris