For those of you that don't know me..
My name is Sam. I am eighteen years young and wow time flies! I was born with a rare genetic condition that affects my skin, it's called epidermolysis bullosa or eb for short[it doesn't deserve to be capitalized]. Eb causes my skin to be super sensitive. I constantly blister and have open wounds on certain areas of my body all the time. That being said, my arms and legs are always wrapped in bandages. Everyone with eb is effected differently. Some cases are really mild while others are very severe and even life threatening. I'm kind of in between. Other than that slight detail about me, I'm pretty normal. lol.
On August 28, 2009, I received a bone marrow-stem cell transplant at the University of Minnesota, with Dr.John Wagner and Dr.Jakub Tolar, in hopes to improve and even cure my skin condition. In case you don't know what that is, I will explain.
First they give you ten days of high doses of chemo therapy [yes i went bald and everything] to prepare your body for the new, good donor cells you will be receiving and so your body does not reject the stem-cells. Let's just say they take you down to where your barley alive and breathing. [oh and Kelly Clarkson is right, 'What doesn't kill you really does make you stronger.'] Then they infuse these new stem cells into your body intravenously kind of like a blood transfusion. Then the rest is a waiting game for your cell count to pick back up. For about 60 days post BMT my skin was completely healed, but i couldn't enjoy it because i was puking my brains out from the aftermath of the chemo. After that i started to blister again. No one knows why. I did have some small improvements that lasted though.
For those interested my mom wrote about the whole experience on http://www.caringbridge.org/visit/samanthasheridan
It was an experimental trail and I was patient number 7. [lucky #7!!]. My younger sister was my perfect match donor. The trial still continues today.
Love ya,
Sam
Hi Sam, I read your blog, obviously- lol and I am so proud of you! Well written and your witty humor is like icing on the cake. When your Mom told me about the mean lady (she doesn't deserve the words "nurse" or "phlebotomist" or what ever it is the technical/professional term is I felt like giving her & hospital a verbal thrashing, a dissertation re: professionalism, apathy vs compassion and, "why did God give you ears since apparently you don't hear & listen". Guess its a good thing I am not there for I'd have likely lost the sanctity of my soul over the incident. You are wise in your young years telling us to "pray for her"; this is what Jesus would say for it is the only way to be. Having said this, she is quite lucky she still has a job or no one has sought legal counsel/recourse! It warms my heart reading about your Blessings of very good friends. I only wish I could be there to spend time with you during your umpteenth hospital stay. May God Bless you my dear Samantha with a speedy recovery and may His angels watch over you night & day. Truly, I am so very proud of you, who you are and all you've achieved in spite of eb. Your inner beauty is a shining star. I love you immeasurably! PS: The number 7 is a very sacred number representing as sacred symbols in the mysteries of God. Umm....
ReplyDeleteSam, you are an excellent young writer from what I've read here. Consider writing a companion book to the one your mom wrote. From your perspective. You'd have a hit on your hands. Say hi to your mom. Rick G
ReplyDeleteHi Sam,
ReplyDeleteYou are a great writer. I enjoyed reading your blog and I learned some things I didn't know. My friend Gene had posted your blog on his facebook page so I came here to read what you had to say. I will be praying for the phlebotomist lady too, sounds like she can use all the prayers she can get. I am sending love and prayers to you too, I think you are very courageous! I hope you have a wonderful Christmas and don't have to take anymore antibiotics. Blessings, Marilyn