Sunday, September 28, 2008

Mike update 9.28.08

I would live in Florida for 100 years if it meant not having to move back to NY for something like this.

We have decided to go back to NY for any treatment that Mike will need. Even though we don't have a diagnosis we have learned that pretty much any spine/brain tumor gets treated w/ chemo regardless of whether or not it's benign or malignant. The support system we have up there is amazing. Down here, as wonderful as everyone we have met is, it just isn't the same as having my family all around me for the very long, very hard months ahead.

We pretty much have all the details worked out. Katie will go back to her old school where my mom works and we will live with my mom. Matt won't be able to come since we can't lose the insurance. We just told Katie this weekend while she was up here that we will be living at Grandma's for a while so that the Drs can help Mike feel better. We didn't tell her that Matt won't be up there with us. He is going to try to work out his work schedule so that he can get up there every other week for 3 or 4 nights at a time.

I overnight UPS'ed Mike's MRIs, CT scans, X-Rays and stuff to a Dr at Columbia/NY Presbyterian and we have found a Dr at Sloan Kettering that will take Mike's case already. I think once I talk to the people at NY Presbyterian I will be more comfortable making a decision on where to go so that Mike can get the best care possible.

I am so numb with all of this going on. I can't comprehend any of it. It feels like I am living in a fog and just going through the motions. I don't know whether I am coming or going and I just keep hoping and praying that I am making the best decisions I can for Mike. It is just so absolutely horrible and beyond me that anyone should have to search for an oncologist for their 2 year old.

Thank you again for all of your prayers, please keep them coming... I will update more soon...

Love,
C

4 comments:

Andersen Family said...

I think you are making the best decision with your situation. We are a bit more fortunate because when our daughter got sick my parents sold their house in NY and came here so we at least have them and my brother. Even with them here it's still hard to have most of our support system in NY. We spent the summer there seeing Dr's at NYU and Schneiders. I love that we come from an area with some of the best Dr's and hospitals. I wish you the best and I will continue to pray for your family. Again if there is anything that I can do to help please let me know.

Janet

The Grossman Family said...

Chrissie - ANYTHING you need from this end please do not hesitatie to ask. I am happy to do anything you need to make this transition as smooth as possible.
Please don't doubt that you are doing the absolute right thing for Mike because you are his Mother and his best advocate. Trust your heart (and some research) and you will never go wrong.
Love and Prayers, Laura

Laura Battaglia said...

Hi Chrissie- Needless to say, I am stunned by what is going on. I want you to know that I am here for you and your family in any way that you think I can be of assistance. I am praying for all of you. My work number is 1-718-616-5420 and my home number is 1-718-332-5442. Please feel free to call me. My e-mail is battagll@nychhc.org

Anonymous said...

you are making the right decision. Sloan Kettering is by far one of the best hospitals in the county. Also Fox Chase in Philadelphia.
God Bless your whole family, I am praying every day for your little boy.
Gina in Palm Coast