JohnnyT Posted August 31, 2003 Share Posted August 31, 2003 I just came across this website. My wife is 42 years-old and has nsclc; she had a lobectomy in March and was told it was a Stage 1. In July, it had metastasized to her brain; Gamma knife procedure was performed in July and that took care of her tumor. In the meantime, 2 masses were found in her pelvis - biopsies showed it was malignant. She in now on Chemo, 3 weeks in her 1st treatment (Taxol/Carboplatin) and does not suffer side effects too much. Her hair just started falling. Next Chemo treatment is scheduled for Sept. 12. This is the only hope we have at this time. We have to boys (7 and 13) and they don't quite understand. This is a mess.... I am glad I found this website. Looking forward to learn from y'all. Johnny. Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted August 31, 2003 Share Posted August 31, 2003 Welcome, Johnny. Sorry to hear about your wife, but youve come to the right place for info and support. Read through a lot of the posts for support, youll find amazing survivors here. I pray for all on this board so know your dear wife is being prayed for. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 31, 2003 Share Posted August 31, 2003 Hi, Johnny! Sorry about your wife. My wife also has NSCLC and is about 11 months since diagnosis. She has had chemo and radiation, as most all of her tumors are bone mets. She is recovering from pneumonia and should be home some time this week. Hang in there, buddy. Don Quote Link to comment Share on other sites More sharing options...
bengel Posted August 31, 2003 Share Posted August 31, 2003 Johnnie, Sorry to hear about your wife. I can understand why your boys would be bewildered about their mother getting sick. That's the problem with cancer, it sneaks up on you at the most unexspected time. There is good advice on this site and a lot of caring people. Don't be afraid to ask questions. I hope you have a support group of family and friends. Don't hesitate to call the oncologist's about questions. The nurses at my oncologist's office are very open and compassionate. My church friends have given all kinds of support. Several are nurses so I get as much advise as I need. I will pray for your wife tonight. Remember our hope is in the Lord. Bud Quote Link to comment Share on other sites More sharing options...
kelley Posted September 1, 2003 Share Posted September 1, 2003 hi johnny. While I can not offer much insight as this is new to my family I will offer you all of the support and prayers I can give. Quote Link to comment Share on other sites More sharing options...
Terrie Posted September 1, 2003 Share Posted September 1, 2003 Johnny- I also wanted to welcome you here. We are all glad to help any way you can! I have four children ages 17, 16, 14, and 8. They have had a heck of a year - I was diagnosed last July at the age of 44. I know boys aren't big on sharing, but if they want to email my kids, maybe one of them could help. They have done a lot of growing up this year - but we have become a stronger unit - I have been blessed with great kids! I know they are more computer knowledgeable than I! I will pray for your wife - and your family. This is a crazy ride - but we pretty much all hang in there together! Terrie Quote Link to comment Share on other sites More sharing options...
gail Posted September 1, 2003 Share Posted September 1, 2003 It is a big mess. It's a sneaky disease. I was 45, with a 15 year old when the lung cancer was diagnosed. My second call was to a teacher at his school, asking her to contact the guidance counselor and his other teachers. As a teacher as well as a cancer survivor, I strongly recommend that you keep the teachers and guidance counselor updated. As a teacher, I would want to know, so that I can be sure to keep a good eye on the kid. Nothing is worse then yelling at a student and then finding out serious family issues. Most schools have voice mail now, so that you don't even have to talk to a person. I even called to say I was starting chemo. Keep in touch gail Quote Link to comment Share on other sites More sharing options...
s_meksvanh Posted September 1, 2003 Share Posted September 1, 2003 http://www.cancercare.org/EducationalPr ... 381&Type=s Helping Children Understand Cancer: Talking to Children About Their Illness Or About Illness in the Family When someone has cancer, it affects the entire family, particularly children. Cancer is a complicated disease to understand, even for adults. There are many types of cancers and no easy way to describe them in simple terms. But if you, your child, or someone in your family has cancer, discussing it with your children may be the most important thing you can do. -------------------------------------------------------------------------------- Protecting Children Can Make Things Worse When cancer strikes a family, children sense that something is wrong, even if they don't know what it is. Talking it over with them, in words they can understand, is always better than hiding it. If you keep things from them, children think that things are worse than they really are. For example, it is not uncommon for young children to think their actions somehow caused a parent or sibling to get cancer. It is important to not only communicate with your children, but to listen to them, and make sure they understand what is happening. No matter what their age, there are ways to communicate with children about cancer, treatment, and, if necessary, life and death. How to Tell Your Child That You or Someone in Your Family Has Cancer When a child's life is touched by cancer, it can cause a great deal of emotional trauma – mostly because any kind of serious illness is scary to a child. Fortunately, as a parent, you can help your child overcome many of his or her fears by simply explaining the situation in a calm, reassuring way. -------------------------------------------------------------------------------- The following are tips on how to talk to your child about a family member who has cancer: Tell them about the illness. Although cancer is complicated, there are appropriate ways of discussing it with children of any age. "Mommy is very sick, so she has to go to the hospital to get well again," is usually enough for very young children; for older children, a more detailed explanation is better. The more they can know, the less helpless and afraid they will feel. Practice your explanation beforehand. It will be a great help to your child if you can be as calm and objective as possible when you discuss cancer, especially if you are the one who is ill. You should practice the conversation with your spouse or a friend, so that you can focus on your child's fears and put aside your own for the time being. Avoid blame. The younger children are, the more they think the world revolves around them, and the more likely they are to feel responsible for a parent or sibling's illness. Assure them by saying that nothing they or anyone else did caused the cancer. Explain to them that cancer is not contagious. Most children first experience sickness when they get a cold, measles, or some other childhood disease that might have been fairly contagious. It is important that you explain to them that cancer is not contagious. They will probably already be afraid that someone else in the family will get it. Assure them that this is not true. Try to balance optimism with pessimism. Telling your child that someone will be "all better" will only make him or her more confused and upset if it is not true. On the other hand, being very pessimistic can scare them needlessly. It is usually best to try to offer a realistic but hopeful assessment of the situation. Keep in touch with your children. If you are in the hospital for any extended period of time, your children may think that you don't want to be at home with them. Staying in touch will help reassure them that your illness has nothing to do with how much you love them. Take your children's feelings seriously. It is common for children to have many different reactions when they learn that a parent or sibling has cancer. These can include anger, sadness, guilt, fear, confusion, and even frustration. All of these responses are normal. Let them know that it is OK for them to have lots of different feelings and that you have many of them, too. Answer questions honestly. Discussing cancer with a child can be difficult, especially when there are so many questions that adults or even doctors cannot answer. It is best for you to be as honest as you can with your child, and not be afraid to say, "I don't know" if you don't. For children, the amount of information you give them is usually less important than making them feel comfortable with what you say. Help children understand treatment. Children often fear the unknown. They can think that a situation is worse than it really is. Explain the treatment process in a way that is appropriate for their age, but don't forget, it is easy for a child to imagine something like chemotherapy or radiation therapy as bad because it can cause hair loss, nausea, and other unpleasant side effects. Prepare your children for the effects of treatment. Cancer and cancer treatment can often dramatically affect someone's appearance. Physical changes such as hair or weight loss can sometimes frighten them, or make them think a person has changed or is different. It is best to explain this to them beforehand so they are prepared. For example, you can say, "When mommy was sick in the hospital, she lost weight, and her hair fell out – but don't worry, it will grow back. She is still the same mommy on the inside." Let children help but don't burden them with responsibility. It is important to let children know that they can help their parent feel better; it will make them feel less helpless if you let them run an errand, fetch a glass of orange juice, or perform some other task that is appropriate for their age. But be careful not to burden them with too much. The stress of having someone ill in the family can be great. They will need lots of time to just play, relax, and be children. Be prepared to discuss death. This is a complicated topic, but if you or your family member is very ill with cancer, you should be prepared to discuss death with your children. Given the limitations of this Brief, it is impossible to suggest ways to discuss this with your child. You may want to consult a trained counselor or clergy first. One of the most important things to remember is to take your child's age into account when discussing death. Pre-schoolers, for instance, do not understand that death is final. School-age children tend to know that dead things don't eat, breathe, or sleep and by the age of ten, children begin to understand that death is the end of life. -------------------------------------------------------------------------------- Regardless of your child's age, when discussing death, remember three things: Try to use very clear, specific terms. Being vague will only confuse your child. Do not use terms like "sleeping forever" or "put to sleep," because children will think sleeping is like death, or be afraid that if they sleep, they might die. Finally, be patient. It will take a long time for a child to fully understand, and to accept, any type of loss. They certainly will not understand the first time you try to tell them. Remember that when cancer strikes a family, children know something is wrong. Trying to protect them will only make them imagine the worst, and will prevent you from helping them to understand and eventually accept what is happening. If you need help in talking to your children, don't be afraid to ask for it. As a parent, you may not always be prepared for every situation. Being unsure of what to say is no reason to be ashamed. -------------------------------------------------------------------------------- * Many parts of this Brief were liberally borrowed from Lynne S. Dumas' book, Talking With Your Child About A Troubled World, published by Ballantine Books. Our thanks for her permission of use. Here is a link for you: http://cancervive.org/sfbv.html Video: Kids Tell Kids What It's Like When Their Mother or Father Has Cancer As anyone who has gone through a cancer experience knows, everyone in the family is affected. Children talk about their hopes, fears and the adult burden placed upon them when cancer strikes a parent. The film is faithful to the kid's point-of-view and validates the children's emotions. This award-winning 15 minute documentary for children who have a parent with cancer encourages communication between family members. -------------------------------------------------------------------------------- “Allow me to congratulate you on your video – it is beautifully done and an accurate and compelling reflection of how children respond to their parent’s cancer. I am extremely impressed with the tape and think it will be an excellent educational resource for broad distribution to families. Joan F. Hermann, LSW Director, Social Work Services Fox Chase Cancer Center – Philadelphia, PA “This video has been of inestimable value to the children and moms who have joined our group. They have been helped to know, by seeing and hearing others, that they are not alone, and can benefit from coming together to share their fears and feelings.” Elma Denham – Group facilitator SHARE, New York "Joy and hopefulness are at the heart of this video, but the fear and uncertainty that is a constant part of these children's lives is never dishonored." Children's Video Report “Overall video is excellent. It should be watched as a family to encourage kids to discuss their feelings…The video is highly recommended by OncoLink for any family that has a child exposed to a diagnosis of cancer.” OncoLink “Using the children affected was very powerful and far more educational than having health professionals presenting. The content was ‘right on’ and the representation of many cultures, boys and girls, gave depth to the content.” Doretta S. Oncology Social Worker Minneapolis, MN Here is another link: http://www.gillettecancerconnect.org/fa ... r_kids.asp "During my Mom's treatments I didn't have anybody I could talk to. After she was better I talked to a lot of people to see what else I could have done and how I could make it easier for other kids who were going through the same experience. This section is for you -- kids whose moms have been diagnosed with cancer. You can come here to find hope, help and connections to other kids who are going through the same experience." --Jon Wagner-Holtz, Founder of Kids Konnected, a support group for kids whose moms or dads have cancer "Now that Mom's sick, everything at our house is different. We hardly ever eat together as a family anymore, and there's never anyone to help me with my homework... Mom used to do that. It's sort of being left up to me to take care of myself." --Martha, Age 13 "At first I didn't ask any questions, although I had a lot of them. I thought people would think I was dumb, but now I know it really helps to ask." --Brad, Age 14 It's natural to be fearful about losing a parent. Mothers are unique and special people. Merely thinking about losing your mom can be a scary, uncomfortable and difficult thought. It's hard, no matter how old you are. The articles below may help you deal with some of the fears and questions you have. You could also learn more about what your mom may be going through living with cancer. >>How to Talk to Your Mom >>Questions You Might Ask >>What to Tell Your Friends >>Why Your Teacher(s) Need to Know -- Staying Focused at School >>Dealing With the Fear of Losing Your Mom >>Feeling Mad or Sad >>Kids' Support: Community >>Jon's Story >>Melissa's Story AWARDS Finalist – The Freddie, International Health & Medical Media Award CINE Gold Eagle Bronze – Chris Columbus International Film and Video Festival Runner Up – Council on Family Relations Media Festival Quote Link to comment Share on other sites More sharing options...
norme Posted September 1, 2003 Share Posted September 1, 2003 Hi Johnny, So so sorry this is happening to your wife, you and your sons. You all have been going through it for 6 months now so you are not novices, you all are survivors and that is what all of us are too. The first year is really very hard because everyone is going through their own he//////. You think it can't get better but guess what.. hopefully it will..... after all the treatments are over, your wife will start on the road to recovery, God willing, and you will all mend, God willing... the boys will be better men for it someday for my son was only 5 when my mom then my dad came down with lc. We took care of them throughout their illnesses and he, my son, is now 36 and a great adult, very caring..... It is so very hard now, but try to take just one day at a time, deal with the day, if it is a good one, hope for it to last forever, if it is a bad one, it is only 24 hours....God Bless Quote Link to comment Share on other sites More sharing options...
JohnnyT Posted September 2, 2003 Author Share Posted September 2, 2003 Thanks everyone for taking the time to reply. I am glad I have found this website and I'll keep coming back. I had to take my wife to the ER last night and they kept her; blood count was at 6 and she is bleeding internally. Her doctor is reconsidering her treatment. They are thinking about possibly doing surgery to stop the bleeding since she is on her 3rd stay at the hospital in a month to get blood. I hope she gets better soon. Johnny Quote Link to comment Share on other sites More sharing options...
s_meksvanh Posted September 2, 2003 Share Posted September 2, 2003 Johnny, Hang in there. I know that it is rough going. I will pray for her, for you and for your boys. She can pull through this and you will all be that much stronger for it. Lung cancer is not for the faint hearted. Quote Link to comment Share on other sites More sharing options...
Candy Posted September 2, 2003 Share Posted September 2, 2003 Well said - Lung cancer certainly is not for the faint hearted. It is a long and hard journey. I am a huge believer that your mental outlook counts for a LOT. Its such a rollercoaster ride. One minute your up and the next your down. My husband and I don't have the added heartache of having young children and for that I am grateful. We work really hard to keep our spirits up and to BELIEVE he can beat this thing. Everyday I put my feet on the floor and remind myself that a cure could be today. It makes as much sense to me to start my day with that thought as it does to start it with something depressing. This is a wonderful place to be - so many people - so much support, prayers and cheerleading. There are days when I only access the good news forum. Quote Link to comment Share on other sites More sharing options...
Carleen Posted September 3, 2003 Share Posted September 3, 2003 Welcome Johnny, I am so sorry to hear about your wife. She has gone through so much, and your children have also had to experience so much lately. I too will be praying that she gets better SOON. Your wife and my husband both received their diagnosises in March. It's been a long but yet too quick 6 months. It's hard to explain, and I can't believe anyone else other than someone going through this would understand. But that is the beauty of this site. Understanding... So many people, unfortunately, are going through the same things, and are so understanding supportive and loving. There is so much information, advice and prayers offered here. Welcome, and we are here for you. I will be praying for your sweet wife, Carleen Quote Link to comment Share on other sites More sharing options...
norme Posted September 3, 2003 Share Posted September 3, 2003 Johnny, Could her problem be from the gamma knife procedure? I sure can't think of anything that would make her bleed? Am praying for her right now? Quote Link to comment Share on other sites More sharing options...
JohnnyT Posted September 5, 2003 Author Share Posted September 5, 2003 Found out this morning where my wife was bleeding from; looks like it's coming from the small bowels where a tumor has grown. The will try a procedure on Monday by which they cut the blood supply to the tumor. Bad news is she was told that there is a possibility that her primary cancer is now small bowels (which is extremely rare) and not lung as we thought it was. This mean that current chemo therapy she is on is useless. I guess I'll be searching the net for more info. this weekend. Johnny. Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted September 5, 2003 Share Posted September 5, 2003 Johnny, I hope this will be a blessing to get the correct diagnosis and find the right treatment. I hope the best for all of you. Jenny Quote Link to comment Share on other sites More sharing options...
norme Posted September 6, 2003 Share Posted September 6, 2003 Johnny, will pray extra hard tonight for your wife and you..... Quote Link to comment Share on other sites More sharing options...
marta Posted September 6, 2003 Share Posted September 6, 2003 HI Johnny, I am so sorry to hear of all of this... I am praying your family gets the (correct) diagnosis quickly... Keep us updated Laura Quote Link to comment Share on other sites More sharing options...
berisa Posted September 8, 2003 Share Posted September 8, 2003 hello, welcome to visit this board and hope you can get what you want to get from this board. This is informative and all guys here are very nice and brave. Quote Link to comment Share on other sites More sharing options...
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