My Dad's journey as a Stage IV patient

Hi All,

Well the ride for a Stage IV patient and their families is certainly a roller coaster. And there is hope new treatments are getting results and there is more research and awareness every day. We can never stop the battle to find a cure, to raise awareness and to fight for our loved ones.

For us it was a few weeks ago Congratulations the Scan results are great the Cancer is under control . . . to just 6 days later a call from the doctor saying your father has taken a turn for the worse and we need you to get here quick because we don’t know how much time he has left.

I haven't written much since dad started his treatment at UPMC with doctor Gibson in his own "clinical trial" of Irinotican and Erbitux. It has been an overwhelming experience, a lot of travel, and my own health suffered and I ended up in the hospital myself for 8 days with a severe kidney infection from which I am still recovering.

Dad’s treatment regime was two weeks with Irinotican and Erbitux every week and then one week with only Erbitux. He got through the treatments fairly well and he and my mom settled in the family house in Pittsburgh at Shadyside.

My dad has had back and abdominal pain, unrelated to the cancer and was taking medicine. He decided that the meds were working pretty well but it he took them more often that he would feel great. Or at least that is what we thought. So he started losing his appetite, had problems with his bowels and wouldn't eat. At that point we took him to the hospital, not wanting a dehydration problem.

I can't say enough for the team at UPMC - they brought him in noticed he had some fluid in his lungs, ran some tests and discovered that his esophagus was not working properly and when he drank water and other clear fluids he was aspirating the liquid into his lungs (he had no idea) making pneumonia a potential. So he was put on a “nectar diet” and not allowed to eat or drink anything with liquid. Talk about hard for a EC patient – so because of his physical condition they gave him a peg tube and have been pushing nutrition that way. They moved him to rehab for therapy so he could get home to the family house and continue treatment.

Anyway on May 6 we got great news that the scan results showed that the treatment was working and Dr. Gibson wanted to meet to talk about what we would do from here and the maintenance treatment. The cancer had not spread and some of it even had reduced in size. What an answer to prayer the whole family was elated. Even though Dad was still in Rehab, he was so excited about the news and looking forward to treatment.

THE ERBITUX AND IRINOTICAN COMBINATION SEEMED TO HAVEA POSITIVE EFFECT ON HOLDING OFF THE STAGE IV CANCER THAT HAD SPREAD TO THE LIVER AND KEEPING IT IN CHECK - THERE WAS NO FURTHER SPREAD AND EVEN SOME REDUCTION IN EVIDENCE OF THE CANCER. EVEN THOUGH WE CAN’T GO FORWARD WITH THE TREATMENT --- I WANT TO ENCOURAGE OTHERS TO LEARN ABOUT THIS TREATMENT COMBINATION. IT IS NOT FDA APPROVED, BUT IT IS AVAILABLE AND RECOMMENDED AS OFF LABEL TREATMENT FOR ADVANCED EC IF YOUR DOCTOR IS WILLING TO GIVE YOU THE TREATMENT.

But everything changed over the weekend when my mother called and told me that my dad seemed to be sleeping a lot and was out of it – the nurses were giving him a lot of pain meds and not watching his sugar. They were giving him sugar and his blood sugar rose to 509. We tried to intervene but he was in such a weakened state. By Wednesday when Dr. Gibson saw him for his appointment they thought my dad wouldn’t make it through the weekend. That they were going to stop treatment and try to stabilize him to transfer him to critical care in patient hospice. The palliative care doctor encouraged me to get to Pittsburgh to see my dad as soon as possible.

Sarah, Rachel and I went to Pittsburg on Saturday and my brother drove up from New Orleans with two of his children, Logan and Grace. My uncle his brother came in from Maryland. When we got to the hospital it was a shock to see my father. He looked so weak and floated in and out – sleeping most of the time.

One aspect that is so difficult is that my dad developed a bed sore, which has turned into a crater in his back, and the only way to treat this sore and cure it is to cut it out in surgery. Unfortunately my father is not a candidate for any type of surgical procedure given his weakened condition. They will try to keep it under control, but if it becomes septic there isn’t any way to fight the infection.

Today the doctor is amazed with his rebound and not sure where we go from here. My father says he isn’t willing to give up yet he wants to fight. Must be that Old Soldier in there. We are talking about alternatives --- he isn’t strong enough to travel to New Orleans so they need to stay in Pittsburgh. In speaking with the doctor and the hospice staff from Vistas we have formulated a plan to move my dad temporarily into a rehab hospital. Then this week we are going to rent an apartment in Pittsburgh near the hospital, get it set up and bring in-home hospice in for dad. We will move him in once everything is set up. We want him to be more comfortable, we don’t know how long he has, but we want to give him the best we can.
I explained to my mom that bringing in Hospice was not giving up, but it was saying that we wanted to make dad’s days to be better and I didn’t think he would want them to be in a hospital or a nursing home. I told her I thought it was a loving act on her part to do this instead of putting him in a nursing home. She thought about it and said she agreed --- this way when she has to eat or even just rest he won’t feel as though she is abandoning him because she will still be close by. By the way they just celebrated their 55th wedding anniversary on May 11th.

My niece is going to stay with Mom and Dad as long as it takes and we will be there often as well (A 5 hour drive for me – 20 for my brother). The kindness and help from the staff at UPMC is astounding --- I am overwhelmed. This has been especially difficult for us all because on Friday we thought we had held the beast back and then on Wednesday they didn’t think he would make it through the weekend. I know this is a long post and I thank all of you who have read this. I will be in Pittsburgh often over the weekends for the foreseeable future --- if you are coming to Pittsburgh let me know I would love to meet you  And of course I thank everyone for their prayers for my dad Harry and my mom Suzanne.

Lots of love --- there is much hope.

Cindy