The Full Scoop

This is a big update, so be sure to send anyone here that might be interested for the full update.

You may have heard or read about the cyst that was growing on my dad's pancreas. The last we knew about it back when my dad was at U of M was that it had about 2 liters of fluid in it. The doctors didn't want to operate on it for a couple reasons. One, it was full of blood and they were afraid they wouldn't be able to control the bleeding if they drained it. Second, the skin or lining of the cyst may not have been fully formed and they were afraid of it disintegrating if they tried to operate on it. We had always hoped that we would eventually be able to operate on it since it obviously caused discomfort and pushed on Tom's stomach, making it hard for him to eat.

For the last few weeks, Tom has been in a skilled nursing/rehab facility. In the facility, he received daily PT, got out of bed at least 2 times a day (usually by a hospital crane), and was able to sit up more in a wheelchair. He has a feeding tube surgically installed in his belly and gets about 2000 calories at night. During the day, he was disconnected from the feeding tube and worked on eating regular food. While he did gain some weight - he got up to the mid 130's from a low in the 120's - there wasn't any improvement in his cognitive function. When awake, he generally stares and it's difficult to get him to utter more than a word or two now and then.

Over the weekend, he had a fever and was obviously fighting something. His white blood cell count was up and his hemoglobin was down. We checked him into Sparrow Hospital in Lansing again. I think the hope was that they could do something about the cyst. They performed some tests including a CT scan. He needed a few units of blood to get his hemoglobin up. The tests show that the cyst has lost its form and has grown in such a way that it is inoperable. There isn't really anything they can do for him in the hospital, and he can only be in the skilled nursing facility if he is able to make progress physically and cognitively.

In our hearts, we know its time for Hospice. We discussed it with the doctors, a social worker and many family members yesterday. My mom laid it all out for my dad and he indicated his agreement. Tom has worked hard for months to get home and now he's going to have the opportunity. We see this as a time for him to be in the house that he and Linda made so beautiful, a time to be with family and friends.

This is going to be an enormous undertaking. Tom requires a huge amount of care, and not all of it is pretty. My mom can not do this by herself. We will have some help from Hospice, but 24 hour help is needed, ideally from 2 people at a time. We need to mobilize our family and friends to get on a schedule of constant care. Since August, when my dad was diagnosed with the brain tumor, there has been a wonderful outpouring of people asking how they can help and what they can do for Tom and Linda. Now is the time for them to call on that help. In the next few days we are going to start scheduling shifts. I will post here on the process for signing up and we'll start making calls to everyone in the Lansing area. If you want to help and don't think we would know to call you, please use our contact form and be sure to leave your e-mail and phone number.

I also know that there are many of you around the state and elsewhere that have wanted to visit with Tom for months but didn't know when or how. We want all of you to be able to see him and enjoy this time that we have with him. Feel free to call the house next week to see about coming over to visit.

I know this is a lot to digest You can use the form I linked above if you have any questions, or leave a comment here on the blog.

Sincerely,
David