Wednesday, April 22, 2009

Thanks for the thoughts!

Thanks to all who have written. The Etsy Mud Team, fellow bloggers (thanks Mrs.B!) and friends have all sent love and thoughts and prayers. When I get very down, I just sit and feel the care that people are sending, and it helps a lot.

David was home for Easter, and while he was very tired, he enjoyed the treats, coloring eggs and hunting for candy. David colored all his eggs solid pink. We tried to get him to put yellow spots on one, but afterward he dyed it pink too. He was also able to attend the play Gracie was in at her High School later that week. What fun to see Grace sing and dance so well on stage, and know that David was there too. My new grandaughter is a bright light in my life too.

I have been doing Ok. My mood has been better. I have made up my mind to mourn David later, and enjoy him now. Amazing how that decision changed my attitude, and that it took so long to occur to me.

My family encouraged me to open my shop temporarily. I think I was driving them crazy moping around all the time. It does feel good to be a little busy and to force myself to think about normal things.

Monday, April 6, 2009

New Tumor

I just got a call from the doctor. They did a scan before David left the hospital, and the results show a new tumor that wasn't there a couple of weeks ago. And it is already 3 cm by 4 cm. They have called a Comfort Team meeting to decide how to manage his pain, which will soon be very bad again. They will be decreasing his behavior management meds, since they feel he will not have the energy to act out anymore.

A couple of weeks ago I met with some people from David's residence, his doctors and the ethics committee at the treating hospital. We decided to not fight the cancer but instead to just manage pain. With tumors in David's lungs, I cannot imagine him slowly suffocating while we ask him to hold on longer and longer. I have been struggling with that decision, especially since some of the people involved at his residence strongly disagree. I know they are opposing our wishes simply because they love David and don't want him to be gone, but still I worry that I am making the wrong choice.

Today, I searched for message boards about this horrible disease and found stories of parents that fought the cancer aggressively only to watch their beloved children die slowly, painfully. I simply cannot do that to David. So instead I cry uncontrollably and hope I am doing the best for him.

The cancer he has is called MPNST. It is an acronym for Malignant Peripheral Nerve Sheath Tumor. I made the mistake of looking under Google images for "MPNST" and found a photo of a dismembered arm with a tumor. The hand was small and white, like that of a child. I see it in my mind whenever I close my eyes. I don't think I will sleep tonight.

Surgery, not radiation

Last week David was supposed to have palliative radiation on some of his more painful tumors.
Since he has tumors in his lungs, the doctors tell me that those will be the ones to kill him. However, he has a fast-growing tumor on his neck that causes him a lot of pain, and radiation would shrink it and make it hurt less.

That was the plan, anyway. On April 1st we were told that he was instead scheduled for surgery. The tumor is too close to the spinal cord for radiation, so they would remove most of it to make the pain less. After surgery, we were allowed in the recovery room until he could move to a regular ward. Within hours he was walking to the bathroom by himself (with help!) eating pizza and seemed alert. The staff was terrific about managing his pain, and by evening he was sleepy and wanting us to leave him alone.

When he is at his residence, David often calls two or three times a day. But at the hospital, he has full access to a phone, so that night (and the other two he stayed there) I received no less than 34 late-night collect phone calls. Our agreement is that when he calls collect, it is a signal for me to call him back, since the hospital won't let him dial directly to our area code. Which means his phone rang all night long. I bet his room mate was just thrilled to see David get well enough to go back to his residence! Poor guy.

At least the doctors feel the surgery will lessen his pain for a few weeks.

Sunday, April 5, 2009

A long Goodbye- Beginning of the End

Some of you may come here from my Etsy Shop blog, Some may come because they are friends and family, and will use this to keep up with what is going on, and some may come here because they are going through, or have gone through something similar. Whoever you are, welcome.

My aim for this blog is to make a place for me to give information, yes, but mostly as a safe place for me to tell what is going on with me, how I am feeling, coping or not, and to get out some of the things I can't always speak aloud.

For those who don't know, on March 10th, my son David, was been diagnosed as having terminal cancer. At the time I was told that he does not have long to live, perhaps only about 6 months. He is 19.

David is my second oldest son- Jens and he have birthdays two weeks apart. He was four when he came to live with us. He has some disabilities: NF1 (a rare genetic disease that causes tumors to grow on the covering of the nerves anywhere in the body at any time. The disorder affects 1 in 3,000 people.) He also has Fetal Alcohol Syndrome (due to his birthmom's substance abuse. He has an IQ of about 40), and some behavior disorders.

He lived with us until his behaviors and size made it impossible for him to be taken care of at home. He lives in a residential facility in the suburbs of Chicago. We visit him on the weekends, and he calls many times during the week.