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Nov 26, 2017 Latest post:
Feb 23, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
In 2003 Paul was diagnosed with a brain tumor - a malignant Anaplastic Astrocytoma, Grade III. He went through surgery and 90% of the tumor was able to be removed. He then went through chemotherapy and radiation treatments and enjoyed 10 years before the tumor recurred for the first time in 2014.
In 2014 surgery to remove the tumor was not an option because of its location. It would cause too much damage and he would end up paralyzed and/or unable to speak. Paul went through another round of chemotherapy and radiation and the tumor was successfully sent into remission once again. This second round of treatments damaged Paul's brain further and his right side became paralyzed. He can no longer use his right hand but he does have some movement in his right leg and he can walk pretty well with a walker.
Here we are in 2017 an the tumor is back again. We knew that something was happening because Paul was having a lot of difficulty talking and his right side was becoming weaker but it was still a surprise at our November 2, 2017 MRI appointment when we were told that the small piece of tumor that had not been growing had grown significantly over the last 2 months.
At the November 2, 2017 appointment we were told that because the tumor was growing so rapidly Paul's time was limited if we didn't do something. Three options were given:
1. Stay on Avastin (a treatment that inhibits blood flow to the tumor to prevent growth (he's been on this treatment for the last year or so and since the tumor grew while he was on the treatment, it means its no longer effective) and add Temador (a pill form of chemotherapy). 2. A very aggressive treatment where a port would be installed in Paul's chest and chemotherapy would be infused through a vein in his chest directly to his brain. 3. Use the same medicine that is used in #2 above but administer it through and i.v. drip rather than through a port.
On November 4, 2017 we had a family meeting with our children and Paul's brother, sister and father to discuss the options. Paul is a fighter and from the beginning he wanted to go with the port and do the most aggressive treatment. We all talked about it and decided it was Paul's decision and we would support him.
On November 6, 2017 I called Dr. Trusheim's office to let him know that Paul had chosen to do the most aggressive treatment, intra arterial chemotherapy via a port.
Dr. Trusheim then told us that he no longer felt comfortable offering that treatment because he did not think Paul was strong enough to handle it. He said that if he took that treatment it would almost certainly make him so weak that he would no longer be able to live at home and would have to move to a nursing home. So, option 2 was gone.
I told him that we would like to do the next option then, the same medicine by way of an i.v. in Paul's arm. The doctor then said that he would do that but only after the both of us went through a bunch of education about it. We were told that if Paul did that his immune system would become so weak that he would have to be confined to the house with no visitors so that he didn't catch a virus. Catching a virus with such a low immune system would be deadly. Option, number 3, also gone.
Then I asked how about staying on Avastin and adding the Temador pills. Dr. Trusheim said we could do that but he didn't have much faith in that treatment. I asked why because the last 2 times he was on that medicine it worked. Dr. Trusheim said that the first time Paul was on it he didn't have a recurrence for 10 years. The second time he was on it he only lasted 2 years before a recurrence which shows that his body has built up a resistance to the medicine and it will likely not work. Option 1 gone too.
We have decided to just keep up the Avastin treatments and pray for a miracle.
Paul is a veteran of the US Navy. We met with the Veteran's Administration and have gotten some really good help from them. Paul goes to the Adult Day Care Center in Minneapolis Monday through Friday while I am at work. I take care of him on evenings and weekends. We are going to do this as long as he is able.
Things are getting a little bit worse each day but we are trying our best to stay positive and enjoy the time we have together. Paul's right side has become weaker but he can still walk with a walker. His vocabulary has become limited to only 2 words - - "okay" and "no". "Okay" is the term for anything positive and "no" is his way to try to tell you something is wrong. He also uses pointing as a way to try to communicate. It is so hard watching him. He knows what he wants to say in his head but just can't get any words out. We've tried different electronic devices to help us communicate but most require typing or writing (which is difficult because he can't use his right hand) and spelling and reading which he struggles with because of the damage the tumor is causing.
This is long and I'll wrap it up now. I thought it would be a good idea to make a site to keep you all updated. I spend a lot of time on the phone but I know that I haven't been able to reach you all. I will try to post updates as frequently as I can.