Wednesday, April 22, 2009

A spigot for Nick

After thinking about it overnight, Nick decided that he wanted to put a catheter with a valve in his side that will allow us to drain his abdominal fluid when he starts to feel very distended. There are some pros and cons to this. The pros are obvious, he will get some relief from the pressure and be able to sleep on his stomach. The cons are that he might get some electrolyte inbalances due to the loss of fluids, and he may end up dehydrated again.

Dr. Kantorowitz, the radiation oncologist at SVH is going to meet with Nick and get him set up for some radiation treatment to hit the part of the tumor that in incringing on Nick's duodenum. Because he is currently partially blocked, he is not able to eat much. The thought is that if they radiate the hell out of that part of the tumor, it will either shrink or at least not progress to the point of full blockage. Chemo did not work for Nick, so we are bringing in chemo's big brother, radiation.

A hospice nurse will be coming by the house tomorrow to meet Nick and to help set up a care plan. They will help us keep Nick comfortable and cared for. It was the hardest phone call I have ever made in my life, rivaling when I had to call Michal Patsy and Ron to tell them that Nick had been diagnosed with cancer.

Nick is pretty tired right now. He had an amazing number of people come to visit him in the hospital and at home. He really appreciates seeing everyone, and feels bad when he is sleeping and people have come to see him. Because of this, we have decided to limit the visitations, and to have an 'open house' of sorts this Saturday. The time is tentatively set for 2-4 in the afternoon, but we will update the blog when we know for sure if/when this will happen.

We are sorry for the mixed messages, and changes to the story. It is a hard decision to limit visitors because we really want Nick to know that each of you cares enough to stop by and give him your love and hugs. But he needs his strength right now, and that is all we can think about. So please plan to stop by on Saturday, and if you can not make it, give us a call and we can arrange another time.

Thank you so much for your support.
Sandra


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8 comments:

  1. Sandra, Thank you for updating the blog. I can't imagine how hard it must be to type those messages, let alone get your mind around all that is happening to your family. I want you to know that you are constantly in my thoughts and prayers. Your dad is doing a great job of keeping me informed of Nick's status, as well as how amazing and wonderful his grandkids are!! Take care, Lori Walser

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  2. Sandra, Please do not even waste one moment of your precious energy apologizing for changing plans in your blog. Everyone reading understands that there's a need for down time and quiet time and that Nick needs his rest and then there's a need for friends and family time. I can't be there on Saturday but please give Nick a big hug for me and tell him that we're all thinking and praying for him. If anyone can fight this and win, he can. Please take care. Tiffany LaMonte

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  3. Readers of this blog may be interested to know that there is also a bunch of activity on facebook at Team Nick.

    It is no surprise there have been so many people wanting to visit. I'll be checking back for details on the open house this weekend.

    Brian

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  4. Nick and family,
    To add to what Brian posted, 171 people in two days have joined Team Nick on Facebook. Many have written messages and posted pictures.

    You have touched so many classmates, students, and people in the community and are so loved!

    xoxoxo,
    Kristen Warren

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  5. Nick, Sandra and family....
    My name is Laurie Buchanan Skoroda and I am one of Nick and Michal's old babysitters. BEHS'78. i was sent your blog today by a friend in Burlington. I live in Philadelphia now with my husband and two boys (I saw that Michal is here too..i emailed her). I want you to know that reading your blog today was one of the most inspiring experiences I've had in a very long time. I was on the phone with a girlfiend just this morning and we were lamenting on how life is too busy and we need to take a step back and find the Joy again. It is so clear that you are there and its a blessing to read your blog and share in all the love and support you both give and receive. Please know that you are all in my prayers and thank you for sharing your story. God Bless! Laurie

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  6. Nick & family,
    My name is Heidi Gustafson-West. Nick played baseball with my brother Robbie and your wonderful Mother taught at our school. I now live in Phoenix and just wanted you to know that your trials are felt far and wide. You have left a mark on many peoples hearts over the years. What a blessing to have the family you do- they have always loved you for you. We admired that growing up and their example too. Our prayers are with you all. Your smile hasn't changed by the way:)

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  7. Just wanted you to know I am inspired by your love, support, and continued positive outlook through this whole experience. You give meaning to the phrase 'keeping faith'. I am saddened by the news of Nick's CT scan--but I know he has a heck of an 'army' in his camp and and abundance of love. Please keep up posted via the blog if and when you all have time.

    Take care,
    Jason Whitman

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