My name is Joy and my daughter, Jo, doesn't want to ask for help so I'm going to do it for her. Her situation is very urgent.
Jo is forty-nine and a single mom to a wonderful young man who's currently in his second year of college on his way to becoming a teacher.
Jo has been battling health issues for at least eleven years at this time. Her first blood clot scare was when she was working in IT eleven years ago. That wasn’t definitely diagnosed, although all the signs were there and she hasn't been feeling well since then. Her platelets have been low and she's been taking iron for about a decade.
Nobody was able to tell her why she was having health issues, even after blood tests and ultra sounds and various other tests. She was always told that everything was normal. Then three years ago, she had a blood clot in her leg which was confirmed by an ultrasound, performed in the emergency department of our local hospital. She didn't display "normal" symptoms of a clot. There was no redness or swelling but just a lot of pain, an overall feeling of being unwell, and her own intuition.
Shocked but relieved to finally have some sort of diagnosis, she was sent home with two types of blood thinners – Warfarin, and something else that was administered through injection once a day. Sorry, but I don't know the name of it.
After about five days of taking her blood thinners as prescribed, she was experiencing intense pain in her right hip. It was bad enough that I drove her to emergency at the hospital myself. We sat for hours, and when she finally saw a doctor, he didn't even examine her. He told her that she had a muscle spasm and she should go home. This was after he was told she was being treated for a blood clot.
The next day, her pain was excruciating. We barely got her in the car to take her to the hospital. Again, they made her sit, crying, in a wheelchair for several hours before she was seen by a doctor. When the test results came back, they immediately admitted her and put her into the only available room – a tub room. So she shared her space with a huge bathtub, and she was given a small, uncomfortable cot style bed.
They had overdosed her on blood thinners.
She was bleeding internally and had an intramuscular hematoma in the muscle of her right leg/buttock. It was the size of a large bakers potato. The pain was caused by the intense pressure placed on the muscle from having such a large foreign mass in the tissue. They didn't want to drain the hematoma because of the danger of infection, so they kept her in the tub room for a week while they stabilized her, and the hematoma basically drained into her leg/system.
She almost died.
For the first three days or so, we couldn't even talk with her. She was too far out of it to eat or hold a conversation. They kept her on narcotic pain killers and ativan.
She was finally released from the hospital about a week after she was first admitted. She went home to her son, a high school student at the time, and their small dog, and tried to pick up on her "mom duties" as best she could.
She spent several weeks injecting herself with blood thinners to prevent new clots. It was terrifying for her after what she had been through, but getting a new clot was scarier than the injections she had to give herself daily.
The hematoma eventually corrected itself, supposedly draining into her leg/system. This left her with what seemed to be nerve damage in her right leg. The pain has never stopped. She's now been on heavy duty pain killers for three years.
A few months after this all happened, while trying to care for her old and ailing dog, she had a misstep on the stairs and fell while carrying her dog. She tried to protect her little dog in the fall and landed badly on her ankle. At first she thought it was a bad sprain and just went to bed. But she was unable to sleep because of the intense pain. Back to the hospital she went, this time with a fractured ankle. The hospital put a splint on it and sent her home.
The splint was incredibly painful, so we had to take her back to emerg again. When the nurse saw the splint, she was horrified to see that it hadn’t been done correctly. It was digging into Jo's fracture. No wonder she was in tears. The nurse made her a new splint and sent her home. The new splint was better, but still not great.
By this time, her dog was over twelve years old and had become so sick, she almost died. When a vet did blood tests on her (insanely expensive blood tests), it turned out that her dog was diabetic and needed two shots per day. And because of the fracture in her ankle, Jo was also put back on blood thinners. She became an injection expert, giving herself a needle once a day, and her dog twice a day.
Her dog was also starting to refuse to eat, so Jo sat on the floor with her (with a broken ankle) three times a day, just to help her eat. She ate pretty well with Jo feeding her, and actually seemed to thrive again for a short time.
Trying to care for herself, a son, and a sick dog was overwhelming, but she got through it.
Finally, shortly before her dog was twelve and a half, she started deteriorating, right when her son was in the middle of writing final exams and graduating high school. It should have been an exciting, happy time, but his mom was still really sick, and now his little doggy was dying.
The day he wrote his last ever high school final was the same day we all had to take our dear little dog to the vet and say goodbye to her. It was heartbreaking.
Jo still wasn't feeling well. The doctor had blood work done...ultra sounds...mri's...and everything kept coming back "normal". But for some reason, she was still too sick to function. She knew there was something terribly wrong. The health professionals were telling her that she was fine and she needed to get back into life, so she tried. She took an unpleasant part-time job, just to try to "get on with it". She just wasn't able to work more than six hours a week because she was so sick and had no energy. Luckily, her job worked around that. After she'd work a three hour shift, she’d be so tired that she'd have to sleep for two days afterwards to recuperate. That's definitely not the sign of a healthy person with "nothing wrong with them".
Getting answers was far from easy, but her doctor tried. She ran test after test. All came back "normal". Finally, in 2017, Jo went into the hospital for surgery and we were all hoping she'd feel better after the issue was fixed. However, that’s not the way it went. She has never bounced back, and hasn't been able to go to work. Her life became extremely lonely as was isolated, spending most of her days in bed sleeping.
She kept begging for tests. Then, at the beginning of 2018, her doctor scheduled her for one more mri to try to get to the bottom of the pain in her leg. They were looking at nerves, and they never expected what they found – "Abnormal bone growth at the bottom of her spine." A.k.a.....cancer.
They immediately scheduled her for a bone marrow biopsy. That was a horrible experience for her. Excruciatingly painful. The diagnosis came back as Myelofibrosis, which is "A serious bone marrow disorder that disrupts your body's normal production of blood cells. The result is extensive scarring in the bone marrow, leading to severe anemia, weakness, fatigue and often an enlarged spleen."
Unfortunately, the sample that was taken from her first biopsy wasn't big enough, and they wanted to be sure of the diagnosis, so they scheduled her for another biopsy. She was terrified...frustrated...tired...fed up.
But luckily, the second biopsy went much smoother, and they got a much better sample. They were able to confirm her diagnosis – a rare form of leukemia. Bone Marrow Cancer.
Jo was finally put on chemo pills. Ruxolitinib. She will be on chemo pills for the rest of her life. She's thankful for them, but they leave her exhausted, weak, and struggling to function. There's no hope of her ever being cancer free, or going into remission. Just cancer and pain management for the rest of her life.
In the summer of 2018, just a couple months ago, she also had an appointment in Calgary at the Foothills hospital with a bone marrow transplant surgeon. We all went together – Jo, her son, my other daughter, and me.
The news from the surgeon was not good.
1/3 of patients die from the transplant itself.
1/3 of patients survive the transplant, but go on to live with "Donor vs. Host Disease" for the rest of their lives, and that isn't pretty.
1/3 of the patients get to leave the hospital and try to get on with life.
The transplant process can cause extreme organ damage – even brain damage – so that's the chance you take.
In Jo's case, her odds are less than 1/3 that she'll survive the transplant. Her organs are already extremely damaged from the cancer itself, and her condition causes scar tissue in her bones. So even if they give her chemo and radiation to kill the marrow she has left in her bones, once they inject her with new, healthy stem cells, they won't have anything to "grab onto". There's too much scar tissue. So we were basically warned that her chances of surviving a transplant are very low.
It was an overwhelming experience. We all agreed together that her best bet is to live on chemo, with the cancer, and hope for the best.
She still spends most of her time in bed, sleeping, but at least she's here.
Her son has almost three years of college/university left and she needs to see him through it. He still needs his mom.
Now for the reason for this gofundme.
Jo needs a reliable vehicle to get to her many doctors appointments – several each month. She has appointments with her GP every month as well as appointments with her Oncologist, ongoing blood tests, and ultra sounds, and she needs decent transportation.
She bought a car about three years ago with my help, but within about three months of owning it, we had to replace the transmission. It's not an extremely old car. It's a 2008 with only about 140,000 km on it, but it's been an ongoing problem. She bought a new battery for it, new brakes, new oil....all the standard stuff, but here we are again. It's back in the shop, needing another new transmission.
My daughter is not hard on her vehicles. She doesn't even do any highway driving because she’s always worried about this car breaking down.
None of us can afford to get her another vehicle, so we're reaching out for help. I’m a senior citizen, retired from a government job, with my own health issues, now working only a few hours a week. I’ve been doing all I can for Jo and her son, but I can’t buy her a new transmission, or a different vehicle. We’ve decided it would make more sense for her to get a reliable vehicle and scrap this one. She’s not asking for a lot....nothing brand new...just a reliable vehicle to get her to her appointments safely. She’ll need it as soon as possible.
If you're not able to donate money, please just share this gofundme link as much as you can.
We appreciate your help more than you'll ever know.
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