Jo's LIFECHANGING CANCER BATTLE
This is my friends story. I have posted this on Jo's Facebook page, so it will give her and her husband HOPE
Hi
My name is Joanne Osborne, my family and friends call me Jo. I was diagnosed November 14, 2013 with "Synovial Sarcoma" which is a rare form of cancer that affects the soft tissue near the joints of the arm neck or leg. It is one of the rarest forms of soft tissue cancer in the world. Mine is located in my spine, which makes it even more rare and difficult.
This cancer is more common among teenagers and young adults with about 1 to 3 individuals in a million people that are diagnosed each year. I was diagnosed at the age of 29.
My cancer started during my pregnancy with my now 3 year old daughter. During the last couple of months I was having tingling and numbness in my leg and lower back. My obstetrician said I probably had a pinched sciatic nerve from the position of the baby.
As it turns out that unfortunately was not the reality.
Nov 4, 2013 was my first surgery and Dec 9, 2013 was the start of my chemo and radiation treatments for the tumour they had found in my spinal tissue. The complication of leaking spinal fluid lasted 4 days.
I had 6 chemo sessions overall and another 33 radiation treatments.
August 28th, 2014 my Dr's said I was "CLEAR" I could go back to work and "live a normal life"...They had got all the cancer. We were so ecstatic!!!!!!
We were feeling so blessed, our life was back on track, I was back at work with my job that I love being an "Early Childhood Educator". Things were truly back on track.
In April of 2015, we had found out we were expecting our second child (with the Dr's approval of course). We were elated and never thought about the Cancer returning.
In May of 2015, I was feeling pressure and pain in my lower back and hips and walking was becoming an issue. My MRI was scheduled for June 15/2015 with diagnosis that same day. The Dr. was there within 5 minutes advising me that a 2" lesion was back and a second surgery was required with another 4 rounds of intensive Pinpoint Radiation. The worst part was that we were now being advised that the pregnancy had to be terminated. The emotional roller coaster and loss was overwhelming to say the least.
A second surgery was performed on June 20th, 2015 all seemed to go well until we found the complication again of leaking synovial fluid, this time it lasted 2 weeks. but the good news was we were advised the Dr's had "gotten all of the cancer". The MRI showed no signed of cancer anywhere else. We were in such turmoil...loosing the baby we were advised was safe to conceive, yet feeling somewhat blessed to have the cancer removed in it entirety, but why at the expense of our unborn child? These were all very real emotions our family was dealing with.
By the end of November 2015, a short 4 months from being told I was clear for the 2nd time, I started to have discomfort again., it started with a dull ache in my back then progressed to the lower left hip area. In December my feet were tingling and becoming numb. I spoke to my Oncologist and was sent to Toronto Western for an emergency MRI, the results were once again, that there was a 1 1/2 centimeter growth inside my spinal cord. My fear and suspicion had become my reality once again.
The bizzarre thing was the Dr. didn't go further with explanations or plan to do immediate surgery to remove the tumour like previous times. I was given an appointment in January for another MRI to reassess. I didn't question his decision right away, however, as the pain increased I realized they had delayed the surgery and I wasn't sure why. The pain, numbness and symptoms plus the loss of control walking was quicker than the other times, I was becoming alarmed. I contacted my Oncologist at Princess Margaret once again, and he advised me he would contact the Surgeon. When the Surgeon responded by saying he was going to let nature takes its course....I honestly lost it.....He was going to let this thing grow in my spine to the point of paralysis and losing control of bladder and bowels. I have a husband and a 3 year old daughter to be concerned about...What was he thinking????? No one had told me there was a risk of Paralysis at anytime, not until now and then it sank in...... If the surgeon proceeded with the surgery required, I would be paralyzed immediately. If he waited, it would buy me time to adjust... it would buy my family...my husband...my daughter and myself, time to adjust. How, How do we adjust...How do I not pick up my daughter and swing her around? How do we not run along the beach or play soccer together? So I adjust????
I am here, I am alive, I see my husband and daughter and families faces everyday... I am grateful, but we are now struggling with the HOW? HOW do we manage? HOW do I manage with my 3 year old while my husband is at work? How can we alter the layout of our home to suit my impending needs? HOW does Don or my Mom assist me? HOW do I get in the wheelchair or HOW can we afford all the medical aids I will need?
Our world is spinning and we are grasping to hang on tight to normalcy.
Go Fund Me was mentioned through a friend and as much as we tried to re finance our home, we were told our financial institiution does not refinance for this type of renovation. We would not be able to unless we changed banks, and that would cost a huge penalty that we cannot afford, not to mention our income is now not even close to what we need to qualify. We have owned our home for less than 5 years. It is a modest one and a half storey house with the bedrooms and bathroom on the 2nd level. We have stairs that lead to the front door and rear door. To be able renovate to accommodate my paralysis would be a huge expense and we just don't know how to do this on our own.
If we could raise $150,000.00 - $200,000.00 this would cover renovating the exterior for ramps so that I can get in and out of the house. It would open walls on the main floor to turn our dining area into a bedroom and the sunporch turned into a bathroom with a wheelchair accessible shower and lower vanities, & a main floor laundry I am currently sleeping in a hospital bed in our diningroom and using a commode beside the bed. Once the surgery is done, I do not know what "next" means.
For anyone who knows Don and I, they will tell you asking for help is very hard for us. We have always worked hard to get ahead, this was just not the "Ahead" we thought we were getting.
How gratefull would we be.....Look at our pictures...look at my daughter's face......we would be eternally grateful for any and all help, so that I can still be as independant as possible for as long as possible, in raising my family and spending each day as normal as we can, for as long as we can.
Thank you for reading our story
Jo, Donny & Livi Osborne