06/05/2011

I wanted to start out this week by saying Good Luck to Kacie and her sweet family. Her husband has started the process of a cord-blood transplant as well. They are a young, sweet darling family. My thoughts and prayers are with them. I hope some of my friends and family might also pray for their family.

Jeremie continues to have struggles this week. Still with the nausea/vomiting. Our oncologist thinks that it is a manifestation of graft vs host disease as our "tools" are not as effective as they have been. So he started on another medication to help with motility of his gut. I don't think that is very effective. But Jeremie's schedule is also pretty whacked. Regularly eating hasn't been his priority. It is all such trial and error. We get something under control, to have something else pop up.

Oh by the way those people who suggest marijuana as an effective anti-nausea medication, it is also an amazing way to directly give Jeremie a fungal and bacterial infection in his lungs. FYI- they make a pill called Marinol. It is for cancer patients. And no it isn't magical. I'm getting a little exhausted at suggestions at the moment. I think people forget that we are being very well cared for. And even though we don't share every single thought we have or idea we are trying, please keep illegal ideas to yourself.

Which brings me to another point...yup I'm gonna rant. I know most things said or suggested are from the heart or really from fear. I know that others do not want us to be going through this. But we are. There are no magic foods, herbs, thoughts, dances, incense, or multivitamins that can make this go away. Cancer is not given to people because they are good, bad, weird or odd. Cancer is a genetic mutation at the cellular level. SOME people have increased risk of cancer based on genetics, environment and personal lifestyle. There is no special food, herb or thought that will go into Jeremie's genes and fix it. While they have been able to map the human genome, they have not found a cure to fix a gene. There are some medications that ease the effects or symptoms caused from the aberrant gene, no cure.

We need love, support and strength. Again, we are private people who do not share every single moment of what we are trying to do to give Jeremie the highest quality and quantity of life, nor do I think that is necessarily appropriate. This is such a personal road we are on. At 35 & 34 years old with 5 children, we are having to deal with real life and death choices. These are the most difficult in our life. What might be good or great for your neighbor down the street, isn't going to be good for us. Like we always have, Jeremie and I see the road we want to be on and work our hardest to be on it. And for some people they just don't agree. At this point I would just ask if you don't like it or agree, please keep it to yourself.

Maybe the cranky is starting to leak out, or I'm feeling a bit frustrated, or I just want some resemblance of my life back. I miss people calling before they come over. And I miss sincerity. And I really miss having any sort of control in my life. I tell you, I just want to pick up my 5 babies and Jeremie and move to New Zealand, and attempt to get my head around my crazy life. Maybe I just need a nap.

I really appreciate the love that everyone shares. I can't tell you how it fills my soul, and makes the burden less. It honestly makes up for the stuff that wears me out. I'm happy for the sweet neighbors I have surrounded myself by. I'm so blessed for the friends I have chosen to be close to. It seems as if they were just meant to be here at this point in my life. As I'm surviving on their love and kindness. While I have my rants, my cup is full of others strength and love. Thank you for your continued support that you provide. I wish I could adequately describe the thankfulness that I feel.

Well...may I will get that nap today ;-)

Love,

Cori