19 Years of suffering is too much for anyone

There’s not really anyway to roll up the last 19 years into a couple of paragraphs so please excuse the novel, I’ll keep it as short as possible.

My sister (Aileen) is the happiest, bubbliest most caring and giving person I know. She’s a mum of 3, her children are her world. She does her best to make sure they have everything they need and that they live a happy life.

Aileen would go out of her way to help anyone. She would give you the clothes off her back.

If you need something done she will come and do it for you even though she is in unbearable pain all the time, which often leaves her unable to walk for days.

In 1996 Aileen was 14 years old. She was running down the road when she tripped and fell. It wasn't a major fall, more embarrassing than anything. The type of fall where you’d jump right up and keep running feeling a little red faced.

Aileen didn't get right up, she lay there screaming in pain. Her knee locked itself into a bent position and her leg started to swell.

12 months later Aileen was still in crippling pain. Her life consisted of doctor’s visits, physio appointments, pain killers and not being able to walk. She had missed a huge chunk of school and her leg was still very swollen. She had to have special pants made to fit over it. Her knee still locked up on and off and nobody had a clue what was wrong.

A whole year after the fall Aileen was sent to a specialist that diagnosed her with Malignant Fibroblastic Osteosarcoma (bone cancer) in her right femur straight away. An x-ray showed a huge amount of the bone was being eaten away in her femur which is why it was so painful. This kind of cancer is terminal and she was diagnosed so far into it the specialist wasn't optimistic about the future.

Our Parents called Family and Friends and people started showing up from all over the place to see her. Within a couple of days she was admitted to hospital to have a biopsy and other tests. Everything came back positive and she was also told she also had secondary spots of lung cancer.

Aileen started chemotherapy very soon after. She lost all of her hair and it made her very sick. Nothing seemed to go to plan. She had several operations. One was to insert a ‘portacath’ which is a tube to receive chemotherapy through. It was put into her chest but it flipped somehow and was unable to be accessed so she had to undergo another operation to have that taken out and have a hickman line put in.

A hickman line is a tube inserted through your chest into the artery in your heart. You are given chemotherapy through it and can also have blood tests done with it. The major down fall is that she had about 30 cms of tube hanging out of her chest for 18 months and it’s really hard to hide.

Aileen had chemotherapy about every 3 weeks for a year. She was severely fatigued and in constant pain so she spent a lot of time just sitting in her wheelchair. It felt like there was one blow after another. We had calls in the night to tell us to come and say our final farewells, she was allergic to most of the medications, chemo leaked into her lung, she was told she would never have a baby as her insides were turning to mush, she reacted badly to a type of chemotherapy and it temporarily paralysed the right side of her body, among other things.

Her nurses told her the only reason she pulled through is because she was so positive and happy all the time. Even at her worst she always wore a smile.

In 1998 Aileen turned 16 years old. Mum and Dad threw her a big surprise party to celebrate. They thought it would be her last birthday as things weren't looking good. They wanted to make special memories with her.

At one point we thought she might not make it to the party as 2 days before her birthday her platelets suddenly became so low she had to be admitted to hospital. The doctors said that if she sneezed or bumped into something she would hemorrhage and there would be nothing they could do if that happened.

She was given blood transfusions and she was allowed to go home the night before her birthday.

Not long after her that she flew (from Palmerston North) to Middlemore hospital to have the rugby ball sized tumour removed from her leg. She was put to sleep for what was meant to have a 4 hour long operation. She had 50% of her femur replaced with titanium, joining onto a full plastic knee replacement which goes onto a titanium 30% shin bone replacement. She almost lost her leg as there was only a 2mm gap between the tumor and a major nerve that, if cut would have left the leg useless.

The operation had complications and ended up taking 7 hours. She died and was resuscitated twice and needed 7 blood transfusions. It was very touch and go.

The operation was a success but it was a very long and slow recovery. Aileen is allergic to morphine and broke out in a full body rash which burnt and itched for days after the medication was stopped. She had to learn to walk again which was really tough on her. She told me everyone was pushing her to walk and she tried so hard but it was so painful and she often got so upset about it she would sit in bed and cry as soon as she was alone.

Even though Aileen was pushed to her limit she didn't give up and a few weeks later she was flown back to Palmerston North where she continued chemotherapy to kill any cancer cells that may have been left behind and to tackle the lung. She had chemo for another 6 months before she was finally told her leg was in remission. Her lung cancer was still slowly growing so an operation was to be planned for that in the future.

Once the chemo finished the lung cancer miraculously stopped growing and has only grown slightly in the past 17 years.

Aileen’s life was never the same. She was in severe pain most of the time and with allergies to all pain killers but Nurofen and Panadol, life was difficult. She couldn't do all the things other people do every day, but she could walk which made her happy.

In 2001 Aileen shocked her doctors by giving birth to a beautiful healthy baby girl. As she was told it would be impossible for her to ever conceive a baby, this was a joyous miracle.

It gave her a new outlook on life, she felt like she finally fitted into the world. Things were looking up!

The doctors told her it was a total miracle and she would never carry another baby.

As the doctors had been wrong once before she decided to be safe and start using a contraceptive, but somehow managed to shock everyone again in 2003 when she announced she was pregnant with baby number 2. A gorgeous little boy.

She found life hard trying to run around after 2 little ones, but she did her best and she had nannies on and off that helped out when needed.

In 2004 Aileen woke up one morning and noticed her leg was more painful than usual. She tried not to worry about it and got on with her day. At about 2pm the pain was becoming intolerable so she decided to rest it and spent the afternoon on the couch. By 5 o'clock it had started to swell and by 8pm she was in so much pain she was put in an ambulance and taken to hospital.

An x-ray showed Aileen had a break in her prosthetic femur. It had been sitting in place but at some point throughout the day the broken titanium had slipped apart causing uncontrollable pain. No one knows how it broke.

She spent 6 weeks in hospital. The first 2 weeks were spent in Palmerston North hospital waiting for her surgeon to become available in Auckland. It was hard for her. The doctors couldn't cast or strap her leg and every little bump sent excruciating pain through her leg.

This hospital stay was very hard on Aileen. She didn't see her kids a lot and she missed them so much. She flew to Auckland where she stayed for weeks. I flew with her and our parents met us there but we could only stay for a few days. She was alone apart from a couple of family members that visited her that lived in Auckland. She was miserable.

Her leg was operated on and the prosthetics were replaced leaving her with 80% titanium in the femur, a full plastic knee and 50% titanium shin bone. The doctors told her it can’t be fixed again, it will need to be amputated.

Aileen had another hard recovery. She developed an allergy to aesthetic and nearly died, she was allergic to all the pain meds and anti nausea medication. She got through it all once again and flew home to be reunited with her children. The recovery from this operation was tough, she had to move back in with our parents and the pain was worse than before. It never really went back to how it was before the break.

In 2007 we all got a big surprise when Aileen fell pregnant with her 3rd and baby, an adorable little boy. Before he was born we all moved to Auckland. Aileen had specialist appointments often and it was hard on her flying back and forwards all the time.

For the past 18 months things have started getting tough again. The cement that holds the rod in place has come loose and Aileen is back to living in terrible pain. She can’t walk unaided, she spends a lot of her days resting due to the pain. Fortunately medicine has progressed and she is able to have another operation. This time it will be a full hip, femur and knee replacement and an 80% shin replacement.

I spend a lot of time with my sister and one of the things that I see and admire about her is how strong she is. Despite the constant pain, she never complains. She always puts on a brave face and lives life. She's in a constant struggle and she never asks for help, she just does things the best that she can every day and i can see it slowly wearing her down and breaking her spirit.

Aileen has always depended on her ability to drive, as she struggles to even walk as far as the neighbors house.

Her car is no good for her leg. She has constant trouble getting in and out of it, as a car is quite low and she has to drop down to get into it and push herself back up to get out of it which causes horrific pain.

Also the way her leg sits on the edge of the seat, and the angle it puts her leg in once shes sitting in the car, often makes it too painful for her.

I see her dreading getting in and out of the car and it's getting to the point where she doesn't want to go anywhere anymore because it hurts too much.

As there is nobody else available to drive for her, and she has a responsibility to get her children to school and what not every day, there is no way around it for her.

Fortunately there is a relatively simple solution to help Aileen drive comfortably and in less pain, but sadly it's financially out of reach.

Aileen needs a much higher vehicle. Something like a people mover that she can get straight into without having to drop down into.

When she is sitting in a vehicle like that her leg is closer to a 90 degree angle which is much more comfortable for her.

Not to mention there’s plenty of room for her crutches and the wheelchair she will be in after this next operation.

I can’t do a lot to help my sister with the amount of pain she is in everyday but I am hoping I can raise enough money to buy a vehicle that makes her life a little easier and her journeys pain free.