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
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
Unfortunately; after the birth of Hazel my symptoms from the Bell's Palsy had not let up. I was having severe neurological symptoms that had begun to affect my vision, speech and facial motor functions. My healthcare providers as well as Don and I began realizing the severity of some of these symptoms and this led to a neurologist ordering an MRI. I went for an MRI on July 18th, just 9 days after having Hazel. July 26th the doctors had read the images and called us to share the results. My surgeon called, he asked if Don was near me; I called Don into the room. He started the conversation with, "I hate doing this over the phone but... you're results are not good, the cancer has seeded into you're brain in two spots." He told us to go to Princess Margaret Hospital right away because the night before the doctors discussed my situation and a radiologist was interested in my extremely rare, extremely aggressive case. That day I went to PMH and they mapped a mask of my head so I could begin radiation immediately. I started the next day, July 27th. 5 rounds, 5 days and just as scary - if not more, as starting chemo for the first time. When the time came to talk to my radiologist we asked what the prognosis was? He said this is the worst possible case ever, then I asked how much time I have...... "2 months to a year and a half". This treatment of radiation is not to cure me or shrink them but so I could live the rest of my life with no pain or little pain.
It's not even possible to put the words into words that make sense because I now have to live with yet another new reality; the possibility that in some amount of time, with almost all certainty, I will lose this fight. Liv and Hazel will grow up without a Mom. Don will lose his very young wife. 2 months to a year and a half, this is what the doctors are telling me. Unbelievable.
I had an MRI done of my spine because I've been experiencing pain again and Don and I was told yet again of more devastating news, there is 4 new tumours growing in my spine. I start pinpoint radiation on August 3rd for 2 of the 4 tumours for five days straight.
Yes; a synovial sarcoma is an aggressive cancer. Yes; it can be fatal despite that being rare: I'm young, I've had surgeries to remove tumours, I lost my hair at one point (and I will again) and I lost the use of my legs....I can't lose this fight. It's not fair. But I won't give up easily, I will fight and give it my all. #fuckcancer.
Our renovation are coming to an end as I'm excited to do the final touches to the addition (and so is Don), it also saddens me to think this is my new reality. Never in a million years did I ever think I would get cancer three thimes, have 5 open back surgeries and be in a wheelchair with a new born.
I was out today and I caught an older woman maybe in her late 70's talking about me to her husband who had his back towards me. She was giving him every single detail about me (It wasn't in a good way). At first I was embarrassed then I got mad and thought why do you have to talk about me in such a way to your husband and think I can't hear you! I looked at her and said "can I help you with something?"
I am growing a thicker skin bit by bit I would ask people not to be rude and talk about me behind my back, but to ask me I'll gladly tell you my story in a nut shell!
Please like and share my story please.
I would also like to thank those who have donated to my cause and have also made meals for us, we greatly appreciate everything.
A few weeks back I was told to go to the emergency by my nurse who comes three times a week. The one side of my face wasn't moving, I was thinking that I had a stroke or even something worse. Don and I went to the hospital where the neurosurgeons diagnosed me with bells palsy. I saw my OBGYN a few days later where she was concerned so she sent me to a neurologist for further testing. Went to the appointment and told her that I have double vision also, she's concerned and wants me to have an MRI of my brain to cancel out any further causes for this. So I'll have one soon after the baby is born.
Our addition has started we have most of the outside work completed but still lots more work needs to get done. We are crossing our fingers and toes that the addition is completed soon after the baby is born.
I want to thank everyone who has donated, please keep sharing my story and we are very thankful for everyone support.
Don and I are excited to announce to everyone that I'm six months pregnant with a healthy baby who has been on this journey the whole time. We both have gone through 6 MRI and 2 surgeries and yet the baby is still healthy and is strong as ever.
Liv is super excited to become a big sister and can't wait to meet the baby.
I would like to thank everyone for their love and support, donating and making meals for us.
Please keep sharing our story!
Joanne lost her battle earlier this week and her family needs your support during this difficult time of adjustments. Her children will need help during the days ahead for education fund to be set up, as the raising of her girls have been left to their grandparents during Jo's illness. Now death has taken her from those precious girls. Anyway you can support this fund will be greatly appreciated by their families. It is hard to raise children safely these days, and with the death of their protector - mother, all the support you can offer will be appreciated. Thank you.
I am very sorry to read this news Jo and Don and of course your beautiful daughters. You are a very strong woman, you keep fighting for every chance to watch the girls grow. Always thinking of you guys.
Jo my heart is with you and your family. We are thinking of you.
I have no words. My heart is physically breaking for you and your family. Don't give up the fight Jo. xo
Jo Osborne back at home, hopefully for the duration of her recovery. It's obvious Jo enjoyed her job, working with children before this nightmare occurred. This week , the family of one of her students suffered a untimely loss. This awesome family directed donations in memory of "Bill Shena" to the gofundme account for Jo. What an incredible act of kindness. Our condolences to the Shena family and their friends.