Hi,Rhike (Rachel) ou can introduce yourself here.

Dear Rachel,

I am so sorry to hear this news about your son. Just as Lainy and Percy said, this disease gives no warning. John was very healthy and was already Stage IV when he was diagnosed. So, please, do not blame yourself for something that you could not see coming. Your son will remember what a wonderful mother you were to him and take that with him into eternity. Stay strong and try to relive the memories that you have made with him. Thinking of happy times will help relieve some of the pain. I will keep your son and you in my prayers. Visit this site often as I find it very comforting. Sending lots of hugs your way, PeggyP

Dear Lainy & PCL1029:

Thank you for your posts and giving me some good words that there wasn’t anything I could have done to save his life. We had snow today in Troy,NY and my son wanted to get the snowblower going. He did about a couple of feet of the driveway and had to give it up. He was totally exhausted. He weight 190 lbs last winter and was strong. It broke my heart to see him almost an invalid now. Hospice here will only sent a nurse in when we call and he would need the morphine pump. Taking care of my son is all I want to do. He has lived in an apartment in our house for many years and I saw him everyday even just to say hello and have depended on him to do everything for me. So its time I stay strong for him and ask the Lord to please take him to a good place where he won’t suffer. When he can’t move anymore, I will call hospice as we have already talked to them. I am in such terrible pain for the loss of his future and mine without him.I pray that there will be more medical attention brought to this disease.

Dearest Rachel, I am heartbroken to hear about your son and I cannot even begin to imagine what you are feeling. With that said, you are no way to blame for anything. In so many cases when the diagnosis is made it is oft times too late. I honestly don’t believe you could have done anymore than you did. I would be very remiss if I didn’t tell you to try to let it go and to spend what ever time there is, in making some happy, loving memories. No one knows how they get CC or exactly when. That is the way this monster operates and the only thing we know for sure is that we know not much. I am sure that your son does not want to go to his peace feeling that you are going to carry this guilt of something that could not be helped.
The best thing you can do now for your son and yourselves is to call Hospice in immediately. The will evaluate him for pain and make him comfortable. That is the key word now, comfort. My prayers and thoughts go out to your family!

I asked for strength.
God gave me difficulties to make me strong.
I asked for wisdom.
God gave me problems to solve.
I asked for prosperity.
God gave me brawn and brain to work.
I asked for courage.
God gave me dangers to overcome.
I asked for patience.
God placed me in situations where I was forced to wait.
I asked for love.
God gave me troubled people to help.
I asked for favors.
God gave me opportunities.
I received nothing I wanted.
I received everything I needed.
By Aaron Hoopes

Rachel,

John was not diagnosed until after his surgery. He was operated on at the University of Virginia by Dr. Reid Adams. He had a pain in his right side over the July 4th weekend of 2008. He kept saying the pain would not go away so I told him to call his doctor when he went to work on Thursday because I thought he might have a kidney stone. His doctor sent him for a CT scan because she thought it might be a kidney stone, too. When she called him that afternoon, she told him it wasn’t a kidney stone but a huge mass in his liver. After a whirlwind of three weeks of scans and tests, he was operated on at UVA. Dr. Adams called me from the operating room to say that the surgery was more than what he had anticipated. They were going to have to remove John’s right kidney, over 70 percent of his liver. part of his colon, gallbladder, and part of his stomach cavity. I told him to do whatever he had to do; it was a 10-hour surgery. Dr. Adams felt sure that he had gotten everything. We had been told that chemo or radiation were not options. When John went for his 4-month scans, spots showed up on the part of the liver that had not been removed. The doctors chose to wait until the next scan before doing anything. By his next scans, he had multiple tumors. I don’t think John’s oncologist had ever treated this cancer before and I am not sure if Dr. Adams had ever operated on anyone who had CC. His diagnosis came from his pathology reports. John started on chemo in March ’09 and has been treated with three chemo cocktails. I asked his oncologist from the beginning about other cancer centers but he kept saying that he could get the information from other doctors to treat John. I wish now that we had gone to somewhere like John Hopkins from the beginning as I hear good things about them. John’s options are running out now and his tumors are still growing. He will be having a procedure this coming week at UVA where they will shoot the chemo directly into the tumors with hopes of shrinking them. They had wanted to do the Y90 theraspheres but John was not a candidate for that. Your son is too young to give up hope; John was 55 when he was diagnosed and we are raising two of our grandchildren. I believe that his positive attitude and his focus on the kids have helped keep him going. Do the doctors know what is causing your son to be so sick? What meds is he taking? I know John got deathly ill when they gave him vicodin. Oh, John’s tumor was the size of a softball and he had never been sick. I know each case is different but if your son heard some of the success stories, he might change his mind about further treatment. We know that John is terminal, but we have already been given more time than anyone expected and his oncologist continues to be amazed that he is still here. So we will continue to pursue whatever we can for as long as we can. Sending blessings your way, PeggyP

Dear Rachel,

I am so sorry to hear about your son. Please do as Percy suggests and get another opinion from a top CC hospital. My husband was diagnosed 3 and a half years ago with Stage IV ICC. His prognosis was 7 months. He has fought hard and is still able to do as much as he can on a daily basis. He tires very easily, but other than that and some stomach pain, he never complains. We just take one day at a time and thank God for that day. I hope your son will get the relief he needs and start feeling better soon. Please keep posting and let us know how his journey goes. Sending prayers your way, PeggyP

Rachael….Nothing ever prepares us to for what you had to express in your postings. In the natural order of things, parents are to leave first. My heart goes out to you. May the love you have for your son continue to provide you with the strength needed for the time to come and forever.
The comfort care hospice provides should entail relief of the consistent vomiting your son is experiencing. It requires an aggressive approach and please, be persistent and insist on it being addressed, immediately.

Please, know to lean on us in this trying time. Too many of us had to walk this road already.
All my love,
Marion

This was one of my worse days of my life. After being told by his oncogist and gasto doctor that my son had 3 to 6 months to live, I couldn’t believe it. I finally sent my son’s (45 and single and only child) medical records to the top surgeon in the Albany,NY area. She told me that there is no chance for the tumor to be removed. His oncologist did a CT scan this morning but my son is really too week to do any more chemo. He had six treatments of Gemzar. He went from 200lbs down to 140lbs as he has nauseamost of the time and vomits all his food. My husband and I met with hospice today. I know my son has given up and is ready to die and will not go to John Hopkins but I am going to donate a lot of money for them to do more research on this disease and find a treatment that will prevent another parent losing her husband or adult child to this disease. It finally dawn on me today how important it is to watch your older children’s health no matter how old they are. My son must have had this disease last spring but never got to the primary care physician till Occtober.
He never complained of pain and had night sweats. Only thought he had an ulcer. My prayers to everyone affected with this terrible cancer. God must have decided it is his time to come home. I am glad I was able to write my feelings on this site.

Rachel