notdoneyet
Forum Replies Created
-
Posts
-
Good Morning Ceci, My 30 year old son was diagnosed June 13, 2012 and he also never joined this site. But as his Mom and the family researcher I was on it day and night looking for help and answers, which I received in abundance! I can honestly say I learned more about CC and found different avenues to research here then anywhere. Knowledge alleviates some of the fear. Then when the Oncs recommend something you understand what they are talking about and are able to ask intelligent questions. This helped my son enormously as he didn’t have to “fight alone”, I brought him all the information and then he would decide. The wonderful people on this site taught me how to help alleviate the small annoying side effects that come along. Hiccups, constipation, etc… I highly recommend you spend a lot of time learning to navigate through the older posts and all the sections. The information here should be printed in gold ink! Best of luck to your daughter, you and your entire family! Fight hard! You may wish to Find the link to Melinda’s posts, she’s in a really great clinical trial that has a lot of promise , I believe. She will fill you in if you email her directly! Lorina
Please accept my sincere condolences. Jeff sounds like a remarkable young man. How fortunate you all were to have each other for as long as you did! Be kind to yourselves.
Lorina Johnson
Trackers Mom Forever 10/21/81 – 3/2/13Dear Pam & Family,
I did not think my heart could break again but it did with the news of Lauren’s continuing on with her journey. Bless Lauren and your entire family for the unselfish courageous war you all waged against CC. The world is a better place for her bright light having shown here, even for such a short period!
Be gentle with yourselves,
Lori Johnson
Trackers Mom 1981 – 2013My sincerest condolences to you and your family. I hope with time all your memories will be happy and heart warming. It is so wonderful you made sure your Fathers wishes were respected. Peace to your family.
So glad to hear Lauren’s doing well! She’s young and strong, she’s got this handled!
CONGRATULATIONSMy strongest wishes have been and will remain with you and Lauren. I hope we very soon hear CANCER FREE from you! She’s a fighter obviously, that little old tube in her throat is nothing compared to what she’s already beat down! Smile your little girl is going to do great!
Your Father and your family’s courage at this time shows the great love you have for one another. Your Dads decision was the same as my sons and I do not regret one moment of being next to him on his journey. Hospice was wonderful. This is usually a painful cancer and I had promised my son there would be no pain, as that was the one thing he feared. We did have to press Hospice for more and stronger meds the last week. If it helps at all, follow your heart. If you feel he is in pain, help him. Be HIS advocate and insist upon his complete comfort. Do not doubt yourself! We did use one suppository prescribed for every 12 hours at four hour intervals. It worked to relieve him. After the new nurse called and got over being upset with me she realized he had not been prescribed an adequate amount. She fixed that oversight immediately. So follow your heart in his care. The only thing I can say that might help your sorrow is……we are not a religious family, but we were fortunate enough to spend a few hours watching my son transition. As his Mom it soothed my soul to KNOW he was not alone and see for myself the most amazing unexplainable and soul comforting interactions he had with ?, two days before his passing! I try to keep thinking of that as right now the air hurts to breathe, I’m missing him so. My best wishes for peace and comfort for your Dad and all of your family!
This board has been so valuable in our, my familys, fight against CC. My own opinion is prepare for the worst but fight for the best. The only true information I was able to obtain came from right here! I could not put my head in the sand and ignore the facts. This board helped me help my son live the best life possible and helped me to know we were not alone in this fight and everyone’s CC does not take the same road. Just as reading the good news one needs to read the sad news and process the information. The open honesty and compassion here armed me to help my son, my family and myself. This board is where I came to look up every question about stats, symptoms, what to expect and how to help. The medical community does not know and has nothing like this board available. I wouldn’t change a thing! And the small doses of sad news, interspersed with the good news, gently leads all to what might happen. Just my opinion and of course my never ending gratitude to all of you!
Thank you Phillip and Lainy. My daughter-in-law worked very hard on the video. I think she missed her calling. Phillip please fight hard and live every moment! Enjoy your Willys-the greatest vehicle ever made, lol! Tracker is smiling from above I’m sure!
Thank you ALL for your kind words. My son is on Hospice here at home. They are always available by phone and are ensuring we have all meds we need for his comfort. Our family doctor has been closely involved since the beginning and has made himself available to us and Hospice 24/7. He has been our Doc since my sons were very young and when I watch his face I know this is very difficult for him also. Again, Thank You all for your support and kindness to every person who reaches out. Best wishes to all in their own battle and here’s to more Victors!
Hello Angie,
You are not alone. My heart goes out to you. My 31 year old son is experiencing almost exactly the same issues as your Dad. He is not on blood thinner but he is scheduled for the Plurex catheter to be placed on Tuesday. He has been “drained” twice in as many weeks and it is very difficult for him to bounce back. I agree, the weight loss and extreme thinness are heartbreaking constant visuals. I don’t know if this will help you but it did me……..I have been angry that first of all this has happened to my child and secondly that it plays out so cruelly in the end stages. But a couple of days ago my son was sleeping and while watching him I found myself wishing (with all my might) that he would pass, right then right at that moment! It was then I realized it would be much harder to lose my son while he was feeling great, looking great, laughing and enjoying. FOR HIM I want peace and no more pain. My hurt and longing for him will be forever, but my wish for him to be free of this diseased body and to go on with his journey is strong. In other words I will be happy FOR HIM when he passes. I will eventually be strong enough to honor his short but wonderful life!My son had terrible incidents of hiccups for two or three days following chemo and nothing worked. I had remembered reading Lainys recommendation for the Brioche-sp and searched my small town high and low for it. I called my sons girlfriend who immediately found it at a CVS near her. He has used it maybe three times and had no more issues with hiccups. I never would have known about it if not for the sharing on this forum! THANK YOU LAINY!
