Help Helen's Lymphoedema Battle
Donation protected
Imagine taping a water logged rug around your leg from your waist to your toes! Sounds limiting? It is. Now imagine that you cannot remove it! And yes it hurts! It's heavy, uncomfortable, limiting and you have been carrying this unbearable heaviness around for 14 years. Your leg is only getting larger and heavier. It puts you off balance; it is affecting your bones and causing arthritis. It lands you in hospital, on medications, it affects your every waking moment and now it is also affecting your work. This unbearable, overloaded, swollen painful condition actually exists for my youngest Sister Helen.
Helen would be forgiven for locking herself away and for wanting to give in. But she has never let it beat her spirit and is always giggling and smiling. She has even successfully maintained a 5 day a week job working at Kmart for the last 8 years while raising her 2 beautiful children Solo.
What I have been describing is a life altering condition called Lymphoedema.
As written by Mayo clinic Staff; mayoclinic.org.
Your lymphatic system is crucial to keeping your body healthy. It circulates protein-rich lymph fluid throughout your body, collecting bacteria, viruses and waste products. Your lymphatic system carries this fluid and harmful substances through your lymph vessels, which lead to lymph nodes. The wastes are then filtered out by lymphocytes – infection fighting cells that live in your lymph nodes – and ultimately flushed from your body.
Lymphoedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg. Lymphoedema can be either primary or secondary. This means it can occur on its own (primary) or it can be caused by another disease or condition (secondary). Secondary Lymphoedema is what Helen has. The smallest injury can be an entry point for infection.
Helens Lymphoedema was caused when her lymph nodes were removed. This was where Helens battle really began.
In 1999 when Helen was just 18 she was diagnosed with Melanoma Cancer. Under the care of RPA's Professor Stephens & Now Professor Spillane, she had surgery to remove the skin cancer. It was 7cm deep into her leg. After the surgery she was offered a spot in a 10 Year Research Trial at RPA. They believed it would return and monitored Helen with checkups every 3 months, 6 months, 12 months etc. At this point her Lymph nodes were untouched and apparently unaffected.
Late the next year in October 2000 Helen gave birth to a baby boy John. And life seemed perfect.
She moved away with her boyfriend and John and was still in the Research Trial.
In June 2002 when Helen was pregnant with her second child a lump was discovered in her groin. A biopsy was performed and the devastating results came back that the cancer had returned. Helen was rushed into King George the Fifth Hospital and her baby was delivered 4 weeks early by C-Section.
At the birth the gynaecologist came out and addressed everyone in the waiting room. He informed us that Helen had given birth to baby girl and in the same breath said that ‘she would be lucky to see her daughters 1st birthday’. We were then told that they discovered a massive 25cm tumour in her pelvic area and believed it was terminal as it was also in her groin.
The Drs sent Helen home for a month to spend time with her newborn baby and on the 26/7/2002 she was re-admitted to RPA where her battle began. She was expected to remain in RPA for 2 weeks. She ended up with a serious infection in the wound site and was in quarantine for 3 months. This is where the miracles kept occurring. Helen was scheduled for intense Radio Therapy but being so unwell with an open infected surgery site was unable to have any conventional treatments. I still believe that the Antibiotics killed ALL the cancer as the only treatment she had was an operation to cut the Cancer out and the strongest antibiotics available to fight the life threatening infection. She is also allergic to Morphine and Pethidine so her pain killing options were limited. She was so brave and still is. If anyone deserves a break it is my little sister.
We went through the years fearful about the cancer returning. Grateful for Helens time with us and for her babies. But the fear was real and it just sits below the surface. But God love her if she was ever scared she hardly ever showed it. I can’t recall a time I have heard her complain about her battle.
The result of removing her Lymphnodes to save her life resulted in a severe case of Lymphoedema. This is the battle she is still waging. She shouldn’t have to worry about every single movement. She is even unable to shave her leg as any scratch or nick turns into a severe infection. She is also on a medication called Warfarin to thin her blood as she is at high risk of blood clots and there have been many scares with this as well.
Cancer survivors are truly amazing as the battle doesn’t end after the cancer has been beaten. It continues in fear and complications and it wears you down. I for the 1st time since this all began have witnessed Helen struggling. I have seen her crying with her head in her hands and it breaks my heart. I have listened to her say for the first time... ‘why , I just want it to stop’!
We have been researching for years and have tried many different and expensive treatment options to help alleviate the Lymphoedema. Anything to make it manageable and lift Helens quality of life which will also give the kids back an active happy mummy.
I mean she is a mere 35 years young and she should be living her life without limitations. She has been unwell since 1999. Helens left leg is an overall 91cms bigger than her right unaffected leg and it is so heavy as it is full of fluids that cannot escape or be drained as she has no Lymph nodes .
Her GP Dr Shauna Watts and her Occupational Therapist Detta from the Gosford Lymphoedema clinic have been urging Helen to start a Go Fund Me page and raise the funds for a radical new treatment that could in all likelihood cure her. Yay to advancements in science. Lets see this miracle happen and share this story so we can help save Helens leg. If it continues to go on and be affected she could face even more serious complications that could result in amputation.
The NEW Swiss treatment we are raising funds for is called;
Lymph Node Transfer. This new and experimental technique involves surgically taking Lymph Nodes from an area not affected by Lymphoedema and putting them into the area that is affected.
This is followed by Liposuction of the Lymphoedema affected leg to restore it to the same size as the non affected limb. Making her legs a match again.
Following these procedures Helen would be required to follow up with pressure bandages etc. And to wear thigh high stockings that are changed at 3, 6, 9, 12, 18, 24 months. She is expected to be off work for 3 months while she recovers and gets well again. So the funds raised will be to help support her during this period as well. The Surgery and care costs are estimated to be $45000-$50000.
Helen is scheduled for an appointment on the 25th August at the Macquarie University Hospital to hopefully book a date for this procedure to be booked in. Let us all if we can contribute a little to make it a reality and give Helen back her freedom of movement and take away the pain.
I believe in miracles and just as Professor Spillane from the Melanoma Clinic declared as he held up Helens hand in the middle of his waiting room, 10 years to the day she entered the Research Trial ‘Miracles Do Happen she was a walking miracle”.
I asked Helen what she would do if her lymphoedema was cured with this treatment.
Her reply was this; ‘just to be able to live normal again, to exercise, to do things with the kids, to wear normal clothes and even a pair of boots. But just to be healthy again and not spend weeks on end in the hospital would be a blessing. To feel like my body is mine again and for the pain to be gone would be a cure for me.’
Helen is miraculously cancer free. Lets help raise these much needed funds to get her this exciting new experimental treatment, so that she can enjoy her young life and experience the freedom and ease of movement and the simple joys of life that we sometimes take for granted.
Lots of cheer and hope Kathie Wilkie
(Helens Oldest Sister)
Helen would be forgiven for locking herself away and for wanting to give in. But she has never let it beat her spirit and is always giggling and smiling. She has even successfully maintained a 5 day a week job working at Kmart for the last 8 years while raising her 2 beautiful children Solo.
What I have been describing is a life altering condition called Lymphoedema.
As written by Mayo clinic Staff; mayoclinic.org.
Your lymphatic system is crucial to keeping your body healthy. It circulates protein-rich lymph fluid throughout your body, collecting bacteria, viruses and waste products. Your lymphatic system carries this fluid and harmful substances through your lymph vessels, which lead to lymph nodes. The wastes are then filtered out by lymphocytes – infection fighting cells that live in your lymph nodes – and ultimately flushed from your body.
Lymphoedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg. Lymphoedema can be either primary or secondary. This means it can occur on its own (primary) or it can be caused by another disease or condition (secondary). Secondary Lymphoedema is what Helen has. The smallest injury can be an entry point for infection.
Helens Lymphoedema was caused when her lymph nodes were removed. This was where Helens battle really began.
In 1999 when Helen was just 18 she was diagnosed with Melanoma Cancer. Under the care of RPA's Professor Stephens & Now Professor Spillane, she had surgery to remove the skin cancer. It was 7cm deep into her leg. After the surgery she was offered a spot in a 10 Year Research Trial at RPA. They believed it would return and monitored Helen with checkups every 3 months, 6 months, 12 months etc. At this point her Lymph nodes were untouched and apparently unaffected.
Late the next year in October 2000 Helen gave birth to a baby boy John. And life seemed perfect.
She moved away with her boyfriend and John and was still in the Research Trial.
In June 2002 when Helen was pregnant with her second child a lump was discovered in her groin. A biopsy was performed and the devastating results came back that the cancer had returned. Helen was rushed into King George the Fifth Hospital and her baby was delivered 4 weeks early by C-Section.
At the birth the gynaecologist came out and addressed everyone in the waiting room. He informed us that Helen had given birth to baby girl and in the same breath said that ‘she would be lucky to see her daughters 1st birthday’. We were then told that they discovered a massive 25cm tumour in her pelvic area and believed it was terminal as it was also in her groin.
The Drs sent Helen home for a month to spend time with her newborn baby and on the 26/7/2002 she was re-admitted to RPA where her battle began. She was expected to remain in RPA for 2 weeks. She ended up with a serious infection in the wound site and was in quarantine for 3 months. This is where the miracles kept occurring. Helen was scheduled for intense Radio Therapy but being so unwell with an open infected surgery site was unable to have any conventional treatments. I still believe that the Antibiotics killed ALL the cancer as the only treatment she had was an operation to cut the Cancer out and the strongest antibiotics available to fight the life threatening infection. She is also allergic to Morphine and Pethidine so her pain killing options were limited. She was so brave and still is. If anyone deserves a break it is my little sister.
We went through the years fearful about the cancer returning. Grateful for Helens time with us and for her babies. But the fear was real and it just sits below the surface. But God love her if she was ever scared she hardly ever showed it. I can’t recall a time I have heard her complain about her battle.
The result of removing her Lymphnodes to save her life resulted in a severe case of Lymphoedema. This is the battle she is still waging. She shouldn’t have to worry about every single movement. She is even unable to shave her leg as any scratch or nick turns into a severe infection. She is also on a medication called Warfarin to thin her blood as she is at high risk of blood clots and there have been many scares with this as well.
Cancer survivors are truly amazing as the battle doesn’t end after the cancer has been beaten. It continues in fear and complications and it wears you down. I for the 1st time since this all began have witnessed Helen struggling. I have seen her crying with her head in her hands and it breaks my heart. I have listened to her say for the first time... ‘why , I just want it to stop’!
We have been researching for years and have tried many different and expensive treatment options to help alleviate the Lymphoedema. Anything to make it manageable and lift Helens quality of life which will also give the kids back an active happy mummy.
I mean she is a mere 35 years young and she should be living her life without limitations. She has been unwell since 1999. Helens left leg is an overall 91cms bigger than her right unaffected leg and it is so heavy as it is full of fluids that cannot escape or be drained as she has no Lymph nodes .
Her GP Dr Shauna Watts and her Occupational Therapist Detta from the Gosford Lymphoedema clinic have been urging Helen to start a Go Fund Me page and raise the funds for a radical new treatment that could in all likelihood cure her. Yay to advancements in science. Lets see this miracle happen and share this story so we can help save Helens leg. If it continues to go on and be affected she could face even more serious complications that could result in amputation.
The NEW Swiss treatment we are raising funds for is called;
Lymph Node Transfer. This new and experimental technique involves surgically taking Lymph Nodes from an area not affected by Lymphoedema and putting them into the area that is affected.
This is followed by Liposuction of the Lymphoedema affected leg to restore it to the same size as the non affected limb. Making her legs a match again.
Following these procedures Helen would be required to follow up with pressure bandages etc. And to wear thigh high stockings that are changed at 3, 6, 9, 12, 18, 24 months. She is expected to be off work for 3 months while she recovers and gets well again. So the funds raised will be to help support her during this period as well. The Surgery and care costs are estimated to be $45000-$50000.
Helen is scheduled for an appointment on the 25th August at the Macquarie University Hospital to hopefully book a date for this procedure to be booked in. Let us all if we can contribute a little to make it a reality and give Helen back her freedom of movement and take away the pain.
I believe in miracles and just as Professor Spillane from the Melanoma Clinic declared as he held up Helens hand in the middle of his waiting room, 10 years to the day she entered the Research Trial ‘Miracles Do Happen she was a walking miracle”.
I asked Helen what she would do if her lymphoedema was cured with this treatment.
Her reply was this; ‘just to be able to live normal again, to exercise, to do things with the kids, to wear normal clothes and even a pair of boots. But just to be healthy again and not spend weeks on end in the hospital would be a blessing. To feel like my body is mine again and for the pain to be gone would be a cure for me.’
Helen is miraculously cancer free. Lets help raise these much needed funds to get her this exciting new experimental treatment, so that she can enjoy her young life and experience the freedom and ease of movement and the simple joys of life that we sometimes take for granted.
Lots of cheer and hope Kathie Wilkie
(Helens Oldest Sister)
Organizer
Carol Madden
Organizer
