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Diseases

Jacqui’s story

“Jacqui had just turned 24 when she was diagnosed with Acute Lymphoblastic Lymphoma T Cells (a form of Non Hodgkins Lymphoma). She passed away 14 months later at age 25 after a long, brave and courageous battle.

Jacqui was travelling overseas in Europe and the US for 3 months before she was diagnosed. She was on the trip of a lifetime, she had planned and looked forward to for so long, with her girlfriends.

A week before she was due to return home she texted me requesting that I make an appointment with her GP. She said she was having trouble with her breathing. I did feel this was strange as she was not an asthmatic but thought maybe she had a chest infection.

She arrived home at 8am on Friday 24th September 2010 and when I picked her up from the airport she was exhausted, teary and very glad to be home. I could tell by her breathing something was not right. She went to the doctors that afternoon and was sent straight for a chest x-ray. From there the doctor said she needed to go to Emergency as it seemed one of her lungs had collapsed. We went to Epworth in Richmond.

She was taken in very promptly where she had an ultrasound on her lungs. At approx 5pm that day, a Respiratory Specialist saw us in Emergency and told us there was a large mass in her chest cavity (8-9 cm).  They were 90% sure it was a lymphoma.

We were numbed and in total shock. We had no idea what that was or meant, only having heard of a couple of famous people who had had this illness (Delta Goodrem, Anthony Warlow).

However the immediate problem was that there was a large amount of fluid on Jacqui’s lungs, as tumours make fluid and she was having difficulty breathing. This fluid needed to be drained off, but very slowly, as draining too quickly can alter the position of lungs, heart etc and send the body into shock and shut down.

This is exactly what happened as 3 litres of fluid gushed out when they put the drainage tube in. Jacqui’s body soon went into shut down and by 1am the next morning she was ventilated and taken into intensive care. The doctors told us it was an hour by hour proposition as to whether she would survive. The situation was dire and we had no idea as to how this had all come about so suddenly.

Our beautiful girl, who we were so looking forward to seeing after her holiday, was in ICU on life support and very, very ill.

The next few days were all a blur with doctors and specialists coming in to talk to us and tell us how serious Jacqui’s situation was. Our elder daughter Brooke was overseas at the time for her friend’s wedding and we had to decide whether to call her back home as the wedding was the next day. We called Brooke back on advice from the hospital staff as we knew it would take her some time to get home.

Jacqui being young, and always keeping herself fit, with much medical intervention, made it through this critical period. She came off life support after 4 days, having had 6 litres of fluid drained from her chest in total.  The results of the many tests done confirmed the original diagnosis of Acute Lymphoblastic Lymphoma. The Specialist felt she had had it for 6-12 months. It was now urgent for her to begin treatment as soon as possible as the cancer was very aggressive.

A haematologist from Peter Mac was called in and Jacqui was transferred to the Haematology Ward at Peter Mac Hospital to begin treatment 10 days later.

Jacqui had 3 rounds of very tough and intensive chemo, lumbar punctures and bone marrow biopsies over the next 9 weeks, where she would be in hospital for 4-5 days each time. She was supposed to have 8 rounds, however after the first 3 treatments her white cells were knocked out and took 3 months to return to low levels. During this time she picked up an infection that hospitalised her for 5 weeks. She was very, very ill again.

By the New Year her white cells started to slowly return and fight the infection she had sustained so she started to improve and came home on New Year’s Eve, 2010. We were so relieved, and so was she to be back in her own home and environment.

She was totally rested from chemo for a couple of months, had intensive physiotherapy to build up her muscles, strength and flexibility and then resumed very mild oral maintenance chemo. Unfortunately this also knocked out her white cells to very low levels.

At this point scans and tests showed there was no sign of any cancer.

Jacqui continued to build strength and resume a more normal life with doctors keeping a very close eye on her and emphasising the need to build herself up.

In May, Jacqui’s haematologist at Peter Mac said to her that he wanted her to consider having a Bone Marrow Transplant (BMT). He felt there was an 80% chance the Lymphoma could return as she hadn’t had enough chemo for cure. If it did return, he had minimal options available for treatment as Jacqui’s white cells weren’t standing up to the intense chemo. He asked her to speak with the specialist at Peter Mac who was in charge of transplant patients to hear exactly what was involved and the pros and cons she would have to consider. She did this with us all by her side ready to support the decision she made.

The thought of a BMT was daunting and something we never thought Jacqui would have to go through. Jacqui researched it and talked to our nephew who was a haematologist in the UK and gave us much helpful advice and support along the way. She talked to other patients who had been through a BMT and she decided after very careful consideration that this was her best chance to beat the disease and regain her health for the long term.

Her BMT was booked in at Royal Melbourne Hospital for July 19th 2011.

After many, many pre BMT tests and check ups, Jacqui went into hospital about 10 days before the transplant. She had to have the chemo and radiation that would obliterate every cell in her body to prepare for the new stem cells to be transplanted. Her donor was a male from Western Australia who was a very good match for her.

She had 4 days of full body radiation 3 times a day and then a massive dose of chemotherapy. The new cells were transported from WA on the day before the transplant. The transplant process itself was just like a blood transfusion.

It took 17 days for the new cells to ‘kick in’ and during this time Jacqui became very ill from the effects of the chemo and radiation. She was in a private room in RMH with limited visitors because the risk of infection was so high as she was immunosuppressed.  She was also so sick she really wasn’t up to having visitors.

After approx 4 weeks in hospital she was allowed to come home. We were all very happy but anxious as we didn’t have the hospital staff so close at hand to help or advise us.  Jacqui had 35 tablets a day to take at this point – anti rejection tablets, antibiotics, anti nausea, steroids etc etc. The list was endless.

Three days a week for at least 5-6 hours per day we had to go back to the RMH Day Ward as an outpatient. Here Jacqui saw doctors and specialists, dieticians, counsellors and numerous other medical staff. She had various blood products, fluids, products to build up her immunity etc for hours on end. It was so tiring for her as she was quite unwell as her new cells slowly began to engraft.  The people we met on this ward and the medical staff were absolutely fantastic and became good friends to our family.

Three times Jacqui contacted viruses and infections during this period or had reactions to medication that hospitalised her for several days at a time. Each admittance involved a trip to Emergency to be admitted before more blood tests and checks to pinpoint the problem.

The first 100 days after a BMT are the most critical. Complications at this stage can be life threatening. Jacqui made it through the first 100 days and was just starting to feel a little better. She was going for short walks, doing some strengthening exercises, eating and sleeping better. She was constantly surrounded by the most supportive bunch of friends who encouraged and supported her physically and emotionally.

Her goal was to make her girlfriend’s wedding in mid November. She bought a lovely new dress and scarf, had her make up done and made it through the whole wedding having a great time. We were all thrilled for her.

Towards the end of November however, Jacqui’s progress slowed as she started getting headaches and fevers. After several trips in and out of hospital doctors were unsure what was happening but she was becoming more and more unwell. She was admitted back into RMH in mid December.

A Bone Marrow Biopsy showed that her transplant had practically been wiped out and her good red and white cells were dropping daily.

The decline of her health continued with doctors doing every test and check possible to find what was happening. By Christmas 2011 her liver and lungs were not at all good. Jacqui came home for Christmas Day but was on an oxygen tank and absolutely exhausted.

A few days later Jacqui was taken to ICU as her heart, lungs, liver and brain were affected. Another bone marrow biopsy was done and it was then that a very serious infection was finally detected as the cause of the major setback she was experiencing. The right medications were immediately started which stabilised her for the time being.

Jacqui was taken back to ICU twice more in the weeks that followed as one infection led to the next. She had no good cells to fight the infections that were overwhelming her body. She suffered greatly but fought valiantly. Each day we hoped would be a little better for her, but this was not to be. Her family, friends, relatives were praying, encouraging and supporting all of us as much as they possibly could.

The doctors, nurses and staff at RMH and Peter Mac were especially marvellous during this time, but all through Jacqui’s battle with lymphoma. We could not thank them enough. However for some reason we will never know Jacqui’s life was not meant to be a long one.

On the 31st January 2012 she passed away peacefully. Our hearts were broken and our lives changed forever.

Medical research is vital for the treatment of this disease and all other cancers. It is the only way forward to prevent or cure the blood cancer that took Jacqui’s short life. Funding is absolutely essential so doctors and scientists can continue their great work in hospitals and universities. We are hearing frequently of breakthroughs made with clinical trials and new drugs in this area. It would be wonderful if new drugs could target only the cancerous cells and not destroy a person’s healthy cells which is an area being researched and advancing.

Our family has made a positive effort to raise people’s awareness of the importance of such research by being involved in events such as The World’s Greatest Shave, Relay For Life and The Ride to Conquer Cancer.

Our friends and families have been so generous and kind with their support in memory of Jacqui. Hopefully this will help others in the future."

- Story written by Jacqui's mother Jan Ryan, picture shows Jacqui with her family: (L to R) father Kevin, Jacqui, sister Brooke and mother Jan