I don't know if I had posted this info here or not, but back in July my Dad was diagnosed with a cancerous brain tumor (Glioblastoma Multiforme). His is only 66 years old and fortunately was in very good physical health otherwise. He immediately had brain surgery which he recovered from very quickly, but they could only remove part of the tumor. He then started treatment in August under the guidance of the Duke University Brain Tumor Clinic. The first type of treatment did not work, so in late September he started an aggressive chemo/radiation cycle for about 6 weeks. Overall he did pretty well with it, although his brain comprehension seemed to deteriorate. After that cycle we visited the Duke clinic again just after Thanksgiving and got the bad news that the tumor had actually grown over 25% during the treatment. The type of tumor my Dad has is the most aggressive there is, so they decided to try one last experimental treatment that was so new that medical insurance would not pay for it. He started that the first week in December, but unfortunately things started going downhill very quickly.
The last several weeks have been crazy. My Dad started having seizures 4 weeks ago and while I was there one day for lunch he had one in which he stopped breathing and his heart stopped. My Mom and I did our best to revive him and fortunately he seemed to come out of it on his own. My brothers had called 911 and he was starting to breath again by the time the paramedics got there. We ended up in the ER at the hospital only to go through a pretty bad fiasco with the doctors and nurses there. They basically stated that there was nothing more they could do for him and that he was now a hospice case and that all treatment for his brain tumor would cease. While we were there, they made a mistake with his medication that caused more problems for him and they just did not give much care or attention.
This was all very difficult for my family to take, especially my Mom, since my Dad had just started a new experimental treatment through the Duke Brain Tumor Center that we were paying for in full since insurance would not cover it. This new treatment has shown a high success rate so far in stopping tumor growth, so we were very hopeful. Unfortunately, the type of tumor my Father has is not curable only palliative and they felt that these seizures were brought on by the new treatment, although seizures are an obvious side effect of any brain tumor. Additionally, my Dad's oncologist who has been very good to him, has been on vacation and virtually unreachable during this time. All communication has only been through the nurses of the oncologist and the Duke Brain Tumor Center has not done anything but state by phone they were in agreement with the ER doctors assessment. This was frustrating since these ER doctors have not been involved in my Dad's case at all over the last 6 months, yet somehow they seem to have been the ones to make the call to stop my Dad's treatment and basically declare him to be a hospice case.
Fortunately, we were put in contact with a hospice close to my parents home that has been very good to us so far. They moved him from the hospital to their facility for several days until his seizures were under control. Then they helped us get Dad moved home before Christmas. We moved him to the middle floor with hospital bed, oxygen, etc. I also convinced my Mom that we needed 24/7 nurses or certified nurse assistants to help out so that she could focus on being my Dad's wife and not his nurse. This was also difficult for my Mom, since as a nurse herself she wants to do everything, but I think she now feels better about it. My brothers and sisters and I have been rotating staying every day/night with my Mom and Dad as well, and many of my Dad and Mom's brothers and sisters have come from out of state to help. Many of my Dad's old friends have come by, as well as former co-workers, employees, etc. He is unable to walk or sit up and his mental state comes and goes, but he is usually very receptive to visitors and recognizes most people. He really gets a boost from seeing the grandkids, but we have had to be very careful as our whole household (myself, wife, 2.5 year old twins, mother-in-law, etc.) have been fighting cold, flu, cough stuff for the last few weeks. Everyone was sick for Christmas and New Years, but the kids still had a great time anyway. All things considered, we were able to have a pretty normal Christmas celebration with all the different family members even though the circumstances were difficult.
A few weeks ago, they were basically telling us it would only be a matter of days for my Dad. There were a couple nights where I did not think my Dad would make through the night, let alone make it to Christmas or get back home. He has put up a good fight and has stayed amazingly positive throughout this whole ordeal. Even now if you ask him how he is doing he says, "Oh pretty good.". However, I think he has tired of the battle at this point. He does not want to eat or drink and usually only does so just to please Mom or one of us kids. Fortunately, so far he does not appear to be in major pain, and I hope that the tumor has at least turned off that part of his brain. This week he had some good days and some bad days, but it seems no one can give us any kind of time frame other than to say "any day".
My Dad and Mom have an extremely strong faith and a close relationship. We have been surrounded by family and friends that have been praying for him and providing support. As bad as this has been at times, I have been thankful that my family has come together and that my Dad has been able to be at peace with all this. Even though my Dad and I have always been close and we know where we stand with each other, it has provided more opportunity for us to thank him for everything he has done for us and celebrate his meaning to us as a Father, Husband, Brother, Son, and Grandfather. I am more sad for my kids than anything else. They love their "Pa-Pa" and don't really understand what is going on, but we are doing our best to prepare them and help them understand that he will be with God.
It has been very difficult to continue to work and have any kind of normalcy at home with my wife and kids. I feel like I should just be at my parents house 24/7 and for many days that has been the case. Work has been very accommodating and I really have not been in the office for a few weeks. I am thankful to work for a company that really lives by the idea of "family first". My department has done a great job of keeping things going in my absence which is good, but also a little bit scary. Eventually, they will realize I am not necessary anymore
I have not even checked e-mail and now have a backlog of 800+ e-mails to get through. I have not played a video game or watched any sports in about 6 weeks. However, one of my brothers pointed out to me that these are things that my Dad always enjoyed doing with us and that he would want us to get back to some normal things.
I still feel a little strange even posting this info, but there are many people here that I do consider friends even though we have not met beyond the realm of trash talking on Xbox Live.
I also know many here have shared their real life experiences - whether good, bad, tragic or happy. I have prayed for many here who I have not met, and I appreciate that others here have shared stories that I might feel their pain and joy. Thanks.
PS - Hope to be back in the Xbox Live gaming mix soon.
