BRAVE BOY: Jacob the day after having his hernia operation.
BRAVE BOY: Jacob the day after having his hernia operation. CONTRIBUTED

YOUR STORY: Sorry saga of family plagued by chronic diseases

WE HAVE a long and complicated medical history and most people we talk to find it hard to believe so much can happen to one family.

We are struggling financially as our primary breadwinner has to relocate to Melbourne to be able to support the family.

We have never, ever approached anyone before for any assistance but we are at a stage now where we feel we have no alternative.

My grandson Jacob is a dear little three-and-a-half-year-old boy.

He was a miracle baby as his mother (my daughter Erin) had to have IVF to have him due to having cancer herself as a child.

We have nearly lost Jacob four times now.

There were complications with his birth and he had to be resuscitated and kept in ICU for a week before going home three weeks later.

On his first birthday he was rushed to Brisbane hospital with a hernia causing a bowel obstruction.

By then he was dangerously ill.

Our poor little guy was a real fighter!

FIGHTER: Erin in remission with her brother Leigh.
FIGHTER: Erin in remission with her brother Leigh.

Jacob was first diagnosed with leukemia at 14 months of age, after numerous visits to different GPs due to his failing health.

One morning we got up and he was yellow, in considerable pain and couldn't even sit up. We rushed him to yet another GP who took one look at him, said "Oh dear!" and sent him for a blood test.

Three hours later he was being rushed to Brisbane Children's Hospital after being diagnosed with leukaemia.

He had 95% leukaemia cells in his blood and the oncologist said if they hadn't found it, he would have died within the next couple of days.

He was given a blood transfusion and started chemo immediately.

For the first eight months of his treatment he was in isolation in hospital after catching three viral infections, two bacterial infections a fungal lung infection and noro virus.

Jacob, who is on maintenance now, has daily chemo tablets, steroids, monthly intravenous chemo, three-monthly lumbar punctures and weekly blood tests and will, all being well, finish his chemo in September 2016.

The dreadful procedures

STRUGGLE: Jacob only hours old in ICU.
STRUGGLE: Jacob only hours old in ICU.

Jacob has had to endure is more than most people would have in a lifetime.

All he knows is hospital life.

He can't go out much as his immune system is so poor and if he even catches a cold it puts him back in hospital. He has never mixed with other children and because of this he is frightened of them.

The chemo paralysed his vocal cords for several months and at age three-and-a-half he still doesn't talk.

My daughter, Erin, was diagnosed with cancer at the age of eight, which has left her with disabilities. We have practically lived in hospitals since then.

My daughter's life has been really tough due to her cancer and over 30 operations, not to mention all the other problems she has had to overcome.

The day Erin finished her chemo I was diagnosed with melanoma.

I am the primary carer for everyone in the home - for my grandchildren (Jacob and Nathan), daughter (Erin) and my husband (David).

I suffered from anorexia, depression and OCD for several years, during which time I had my two children, Leigh and Erin. Leigh developed autism and in June 2008 we received a phone call telling us that he had died suddenly at the age of 23.

We were living in WA at the time and he was living in Victoria with his girlfriend.

An inquest was held and after six weeks the cause of death was said to be an undiagnosed genetic heart condition.

My daughter, husband and myself all underwent genetic testing, but no gene was found and there was no family history. His cause of death is now being re-investigated.

In addition, Erin has a heart abnormality and even though this could have been caused through the chemo, it was decided that considering her brother's sudden death she should have an implanted cardiac defibrillator fitted.

I am in chronic pain constantly due to an accident I had in the UK in 1984.

I had hoped to have surgery to deal with this pain but I have been told recently that I am not a suitable candidate so will have to continue to rely on pain relief to manage.

My mother was diagnosed with terminal lung cancer in 2005 and I cared for her for the last year of her life. In 2006 my husband had a quadruple heart bypass.

Erin's other little boy, Nathan, has had his share of problems.

For the first three months of his life he would stop breathing and lose consciousness but after several hospital admissions, numerous tests and being put on medication, now seems to be doing well. When Erin, Jacob and my husband were on their way home from hospital a couple of weeks ago someone who wasn't paying attention rear-ended her car and wrote it off.

As it is an old car, the insurance payout won't even cover the cost of the repairs.

This has now left her with the problem of how to get Jacob to his appointments as quite often I will have to take Erin to an appointment on the same day that Jacob has an appointment that his grandad will take him to. Not easy with one car! If I added all the other events, I would need to write a book which has been suggested to me several times, but who has the time!

My husband, myself, daughter, son-in-law and grandsons all live together.

My husband is retired and my son-in-law's wage just about pays the mortgage.

We have no family we can ask for help and don't really know anyone here as we have spent most of our time in hospital since arriving in Queensland.

We are pretty isolated and alone with all this and to tell the truth have been over the last 30 plus years.



Four things to do this weekend

Four things to do this weekend

There's plenty happening across the Tweed this weekend

Jon prepares to lose his locks on his own terms

Jon prepares to lose his locks on his own terms

Bilambil man to cut dreadlocks to raise money for cancer

Sunny weekend set for the Tweed

Sunny weekend set for the Tweed

It's set to be a sunny weekend for the Tweed.

Local Partners