Friday, March 14, 2008

In Sickness and In Health

We met with Dr Burt today quite a somber event similar to giving birth but without the end result. We were hopping to avoid the randomisation due to the endorsement of the insurance and Sharon's condition progressively worsening. This isn`t going to be an option as we so hoped and we have a 50/50 chance of getting stem cell v chemo. The Russian roulette of randomisation will take place on Thursday 20th. If we get chemo we will receive the first dose on Friday and have 5 more monthly with tests of pulmonary function and skin scores. With no improvement or slight deterioration we will switch to the stem cell transplant during this period. If we get stem cell transplant on Thursday we will receive mobilisation in preparation for Sharon's stem cells being collected and receive the transplant at this time. Another hurdle on this most challenging ride to overcome before we get Shazza back to health.

11 comments:

Anonymous said...

I hope and pray you get randomized to the stem-cell transplant first!Whatever the result, you are still on your way to getting this disease under control. Hang in there!! Maryc.

Anonymous said...

i have been reading the updates, they are a roller coaster rides...you guys are in my prayers...God bless...jojo

Anonymous said...

excellent updates, i look forward in reading, you guys are in my prayers....God bless you

jojo said...

i love reading the updates, i have tried leaving messages but i am not good at it...i hope this works

thank you craig and sharon, letting your family and friends experience this roller coaster ride.

you guys are in my prayers...God bless.

take care
jo

Unknown said...

Dear Craig and Sharon,

What courage!!! As a recently diagnoised Sclero.Patient I can only hope that your path will lead you to a cure.
Always in my thoughts and prayers

Chris D.

Anonymous said...

Craig and Sharon,

I remain positive about Sharon's randomization to the stem cell arm of the study. I can see her now hooked up the the machine getting her stem cells back. Have you heard of "the Secret?" Envision what you want and you shall obtain it. (I know it sounds New Agey, but someone told me to do this, and I did it iin regards to my appeal...I imagined a room with all the reviewers looking at my case and saying, "We should give this poor unfortunate woman a stem cell transplant...let's decide for her!"...and the rest is history. Try it!!!
Victoria

Anonymous said...

GO STEM CELL! We will be praying and sending you good thoughts all this week.

Anonymous said...

Sorry to hear you have to go thru this lottery process. But I'm sure if you remain positive all will come good in the end . We will keep reading your blog on a daily basis thinking of you both.
love and best wishes big bruv and family

Anonymous said...

Just want to say happy birthday shaz!! Love you loads, love wend xxxx

Anonymous said...

hi shaz how ham ya happey birthday a norther day older love brian josh and kel all the best xxxxxxxxxxxx

Anonymous said...

Hi Shazza,
I have been keeping up with the blog. So glad you guys are doing it. Lyle and I wish you the very best. You are in our prayers daily and we love you. Happy B-day, just another year younger. :) Michaela

About Me

I work as an RN in Endoscopy at John C. Lincoln Hospital and in 2006 I was diagnosed with Systemic Scleroderma, a condition that has no known treatment and was always symptom management. After doing some research, I discovered Dr. Burt, a doctor in Chicago who is pioneering the use of stem cell transplant to treat Scleroderma. This process uses my own stem cells - taken from me, cleaned, and then re-introduced back into my body, so that it will no longer recognize the Scleroderma. This is a very basic summary of a complex procedure. Systemic Scleroderma has a very poor prognosis and with my symptoms worsening I feel that this is my only chance at getting treatment and reversing my symptoms. I have worked for 6 years at JCL, Deer Valley and hope to continue there with excellence. I wish to continue be a good mother to my 2 boys, a good wife to my wonderful husband, and maybe one day be a good grandmother.