So I know allot of people were looking for my blog post yesterday but i wanted to talk with my doctor a little bit before I put anything up. I was slightly concerned with the newest news that there was a new development (11q23 MLL translocation) and that it meant a poorer prognosis (so I thought it is but not that bad) I went ahead and did everything that you are not supposed to do and that is look up information on the internet. NEVER EVER try to do your own research on the internet it will haunt you and make you feel like this is the end. Even if you find a reputable site 1. It is not your Doctor and 2. Nobody is the same that data could be the last clinical standard for all we know. So I apologize for the not posting last night I was in anxiety land and was busy doing my own research. As I found out today it is not that bad and what an MLL translocation means is that it is usually found in infants with ALL well the reason everything I read was sounding so horrible is because Infants have a poorer response rate to Chemo. The difference is that They can treat me with higher doses of chemo to treat this and try to prevent a relapse of my disease. But here is where all of you come in, They are going to go ahead and test for a another Chromosome/ gene abnormality that can again cause a difficult ability to cure this disease. Please use every extra prayer that you have (and I hate asking for prayers it feels selfish) to hope that I do not have any of the other cell gene mutilations PLEASE! I don't think I want anymore bad news with this especially since everything was going so "well" I did go ahead and look at my labs they are all good and again that is exactly what we want to see as to put this into remission as fast as possible to prevent a relapse. Thanks everyone for the kind words of encouragement, all the prayers already, and all the cards I have coming in. I am truly blessed to have so many people looking after me and praying for me Thank you all so much from the bottom of my heart.
PS as long as everything goes well I can be out of here on Monday after my spinal tap as long as nothing substantial happens.
You know I'm not big on reading people's pages on fb. I found out about your condition yesterday from tiah Robinson! I broke down and cried. You're too much of a bubbly person for something like this and it kills me. I'm glad your such a trooper and strong. I miss you dill-hole.
ReplyDeleteChris called me today, my heart aches for you. There is no reason for you to have to ask for prayers, anyone who knows you and knows of this is already sending those needed prayers to the places they belong!! Please send me an email at feb9822@yahoo.com (my home email) and include your hospital address. You know I already have access to your home address (cheating aren't I!). I would love to maintain a dialog, besides your blog, just so you can have someone to open up to.
ReplyDeleteStrange I found out about this today, our ACS in Chenango County is holding it's "Relay for Life" tonight, a fund raiser into the overnight, teams keep a member walking on the track at the Fairgrounds in Norwich (you must have come by it when you came to Norwich). I participate and raise funds in Memory of my Grandma who died in 1974 of breast cancer as well as my Dad who had prostate cancer and my daughter's best friend who passed away in March at the age of 41 with a colon CA she had been battling with since she was 28 years old. I will be lighting a luminary at the Relay with your name on it to help our prayers to rise into Heaven. You WILL get through this, and continue on to be the best nurse possible, not only because of the education you received, but also because of what you have been through. I had heard of sensitivity training before, however I think you went a little overboard.
OK, I've got to sign off now. Hope things continue to improve over the weekend, I'll watch for your response on my home email. Love and Light to you my friend...Connie White, BSN, RN
You should ask for prayers Sweetie - it helps keep God doing a booming business. We love you and you are in our prayers but I will say an extra one for you.
ReplyDeleteDylan i love you. You of all people should know not to do your own research. Text me when u are on your way home....
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