Jodies INCREDIBLE JOURNEY

Her Trial & Triumph

Jodies Journey (short-form) is now published in a book of

inspiring stories, purchase a signed copy here.

ORIGINAL P.E.T.(CANCER) SCAN OCT/06.

CURRENT P.E.T. (CANCER) SCAN JUNE/10.

THE SHOCKING FACTS

Non-Hodgkin's lymphoma is a life-threatening disease and the incidence rate is on the rise, nearly doubling since the 1970s.

For young people with cancer (of all types) the stat's are equally shocking:Young people with Cancer - originally diagnosed between the ages of 18 - 40 have only seen a 1% improved survival rate in the last 30 years worldwide. Compare this to paediatric and adult patients, who have seen a much higher rate in improved survival percentages. There are many reasons for this....READ ON for more of this important information.

THERE IS HOPE - AWARENESS, EDUCATION & RESEARCH INTO A CURE, IS THE KEY.

Signs And Symptoms Of Non-Hodgkin's Lymphoma CLICK HERE

Click Here to Subscribe to the Jodies Journey Email List

(See Below For A List Of Jodies Treatments)

My story and subsequent health difficulties, have been an enormous challenge, but one I hope that will inspire and encourage you as you read on about my journey (jodiesjourney.com)

My grandmother (now passed) prayed with me in her Sydney kitchen when I was 13 years old. 20 years later - At 33 (January/05), I faced the largest challenge of my life, but I didn't yet realise it.

Here is my story: I had been getting occasional pain down my R arm and I had felt run down and tired for some time, but having a baby and a disabled daughter always seemed to account for this. (November/05) I found a large lump in my R breast. Concerned it was breast cancer, I arranged an immediate check at a specialist breast clinic. I was told it was just a reactive lymph node, due to infections and that there was 'nothing funny going on'. I had been catching more illness than ever before and it was assumed this was the reason for the enlarged nodes. In retrospect, we now know that my immune system was breaking down and I was not able to fight off infection. The enlargement of my nodes was part of the greater problem. The cycle continued in pursuit of a diagnosis: 11 months of searching; seven doctors; 21 doctors visits. I could get no assistance & no-one would listen to me. I continued working full-time, as I had no answers and people around me, started to question my symptoms.

One morning - at a ladies camp, I woke to find numbness and sciatica in my right leg. Finally, after a week of no sleep, terrible pain and little relief, I said to my husband, If I still feel pain in the morning, I'm going to the ER for help. An ER senior doctor decided to do a CT scan 'Just in Case'. What was revealed would shock and distress the doctors, nurses, myself and my family. I was immediately admitted, in complete shock. That night, a young doctor came to tell myself & my family what was happening & what they had found. I will never forget her words: 'I have been chosen to tell you what we have found' (in other words, she got the short straw!). 'You have a mass in your back causing your pain and sciatica; its eating into your spine and pushing into your sciatic nerve, hence your sciatica. We don't know what it is, or where its come from, but we think it's probably malignant'.

I remember pleading and crying with this woman to tell the other doctors to work hard to save my life, because (at the time of diagnosis) I was only 35 and had two small children to live for. My final diagnosis was Follicular Non-Hodgkin's Lymphoma, B-Cell, low-grade, stage 4. The very last stage. I was later to find out that I had Lymphoma eating into bones, nerves and muscles in a large amount of my body. The pain in my R arm/shoulder was identified as bone pain from Lymphoma.

The process of treatment then began: seven weeks of hospital as an in-patient to start with (all up 10 weeks inside during my intial treatment); biopsies, tests, MRI's, scans, x-rays and then radiation and chemotherapy. Two weeks of emergency radiotherapy to save the function of my right leg; six rounds of systemic chemotherapy and eight rounds of a special Lymphoma antibody; nine months of wearing a Hickmans catheter (for withdrawal of bloods/delivery of chemo). My hair fell out twice. I went through two stem cell harvests and much fatigue and heartache.

It seems amazing (looking back), that I was able to endure the 11 previous months working, looking after the kids and home, all while my body was being ravaged by the Lymphoma and I was desperately trying to get help.

Two years, post diagnosis and treatment, my former GP was disciplined by our state medical board for not performing to expected medical standards, set by our state board for all doctors. I may have been diagnoised sooner, had these standards been met. This was a long process and took me (on my own) 2 years of active discussions, investigations & consultation by the medical board, regarding my experiences and the difficulties I experienced in trying to get a diagnosis.

In the last 4 years, I have had over 63 treatments of chemotherapy and other drugs, been in hospital thousands of hours, had a device (port-a-cath) and Hickmans implanted in my chest and also been a blood and plasma receiver many times.

Due to the extensive state of my intial disease, I have been advised that I am medically incurable. As I continue to fight and remain positive, my aim is to believe for a long and disease free life, regardless of prognosis. I went into remission in March 2007 and fell back out of remission in January 2008. My right leg function was saved again after relapse and my current status is uncertain. Much of my original recovery can be attributed to some big prayer and amazing hematologists at the Royal Brisbane Hospital (RBWH) and other medical teams. We are currently gathering opinion about my disease status and/or whether I am dealing with Progressive Radiotherapy Scaring & lesion damage. My R leg & foot have been progressively become weaker over the last year (Feb/10 - Feb/11).

My faith in God and the knowledge that I am assured of residence in His heaven, has given me the strength and the motivation to continue when it all seemed too much. I cling to the promise of Jeremiah 29:11 - For I know the plans I have for you says the Lord. And the vision of the 'woman with the issue of blood'.

I am marching on and doing more than just surviving, I am believing for a better future, healed and cured. I am now currently working on health reform and Lymphoma awareness to prevent others from enduring the nightmare I went through. I want to change the system so that people world-wide have safer GP visits and faster diagnoses. I have recently been talking to government officials to suggest ways to make our system better at detecting blood cancers, catching them earlier and supporting carers in crisis. My hope is that many people will read my journey and understand the signs/symptoms of blood cancers and get motivated to support health reform. I want people from all backgrounds to be encouraged by my journey of faith and trust in a God who carried me through my pain and suffering and continues to do so. I enjoy every day and appreciate all that I have. It is a miracle that I have survived.

To follow Jodie & her latest blog go to Jodies Blog page.

or

www.jodiesjourney.com/jodies_journey_blog_01

Jodies Media & Reform Achievements

2012

January, 2012 'Inspiring Stories of Hope' due to be released for publication and distribution in the USA & UK, via Ark House Press.

January, 2012 Jodie is asked to contribute to and comment for a NEW Australian national website for breaking health news, created by a group of very professional & committedex-News Ltd Journalists. The new site is called healthreporter.com.au - Jodie's first article for the site on 'delayed diagnosis' and an article about Jodie's thoughts on health reform are now published.

January, 2012 A doctor from New York, has approached Jodie to ask her to write, blog and contribute to a new website and book from the USA for women dealing with the Aesthetic Issuesfaced, not just with breast cancer, but also other cancers (similar to Jodie). The site will be up soon and is backed by a team of key opinion leaders in oncology, reconstructive and plastic surgery, onco-dermatology, cosmetic dermatology, hair & makeup and wellness professionals, out of the East Coast, USA. The name of the project is 'Surviving Beautifully'.

January 12, 2012 Jodie discussed her journey in a 15 minute interview with radio hosts and producers Karen Hunt and Matthew Prater, in conjunction with national Australian radio show 'The Journey' on the UCB Vision RadioNetwork. The interview was heard on over 514 relay stations throughout Australia through the network. Listen to the interview, by clicking right here.

February, 2012 Matthew Prater from the radio show Historymakers plays Jodie's original UCB Vision Radio Network interview for his listeners on his Australian nationally successful radio talk show.

2011

October, 2011 'Inspiring Stories of Hope' in the hands of key federal Australian politicians and the Govenor-General of Australia, plus the Queen of the Commonwealth, Queen Elizabeth II.

June/14, 2011 - Jodie appeared on both the evening Channel 9 & 10 news bulletins for Queensland, in regards to the Queensland State budget announcement regarding financial assistance for new home builders (Jodies family are planning on building a new home).

June, 2011 - Jodie is currently speaking to policy makers in Australian politics on creating better support for cancer survivors aged 18-40, Australia wide. This new policy will hopefully influence other countries to consider the same.

June, 2011 Jodies photo & a short article was included in a national Ebay magazine.

May/29, 2011 - Jodies Journey was mentioned in an article in newspaper 'The Melbourne Age'.

April/05, 2011 - Jodie appeared on an Australian national television program, called INSIGHT to discuss how a new carbon tax may impact on pensioners in Australia.

2010

June, 2010 - National Article re-published in Australian Magazine, Christian Woman.

April/08, 2010 - Jodie gave a live interview to the Good News Show on Redcliffe station (99.7FM) with station talent Jeuel Pavitt about Jodies Journey (Station signal from Brisbane River to Caboolture, Australia), 2010.

April, 2010 - Jodie contacted management from the Office for Women the primary office for consultation to Queensland state government, in regards to womens issues. Jodie met with a management team for a series of discussions on ways the office can assist more women dealing with illness & disability.

March - April, 2010 - Jodies Journey was featured as a Faith Journey of the QLD bi-monthly state-wide publication of The QB (QLD Baptists State Magazine).

March/10, 2010 - Madonna King from 612ABC Brisbane, mentioned Jodies story & website, whilst the station supported the Leukaemia Foundations Shave For A Cure fund-raiser.

2010 - Jodies Testimony submitted to Challenge News upon request for a future publication.

2010 - Jodie briefly met both Karl Stefanovic & Lisa Wilkinson (Channel 9 Australia Today Show).

2010 - Jodies Journey on printed Christian Notes: circulation in the Sydney area, listed on media page.

2010 - Jodies Journey published on website - Christian Notes.

2010 - Jodie is the subject of a U.S. radio interview by KRDU (Fresno, CA) talent Ken Adams (Keltic Ken).

2010 - Eight letters now displayed on page: World Leaders are from The Queen (Buckingham Palace), The Duke of Edinburgh (Buckingham Palace), The Prince of Wales & The Duchess of Cornwall (Clarence House), The Duke & Duchess of Gloucester (Kensington Palace), The Duke of Kent (St. James's Palace), The Duchess of Kent (Wren House), Her Excellency Ms. Quentin Bryce AC/Governor-General of the Commonwealth of Australia (Government House), Mrs. Terese Rein, wife of the former Prime-Minister of the Commonwealth of Australia (Office of the Prime-Minister).

2009

January - February, 2009 - National Article published in Australian Magazine, Christian Woman.

2009 - Jodie joined 'Family Advisory Council' for the new Queensland Childrens Hospital.

2009 - Disciplinary proceedings finalised by the Queensland Medical Board, in regards to clinician negligence and Jodies diagnosis. Formal caution issued to GP.

2008

2008 Jodie submitted input to the Australian National Health and Hospital Reform Commission for national reform proposal, 2008.

2008 Jodie submitted input to Cancer Australia for review and comment, by federal health office.

2008 Jodie met federal health minister & staff, Submission given to the minister regarding Jodie's Journey.

2007

2007 - 2009 Jodie continued discussions with the Queensland Medical Board, concerning Jodies case.

2007 - 2009 Jodie continued discussions with the Queensland Health Quality & Complaints Commission, concerning Jodies case.

October, 2007 Jodie appeared on Australian national live television, channel 10 on television programme '9am with David & Kim'.

September/26, 2007 Jodies story & an article about her was featured in Pine Rivers Press, North Brisbane, Queensland.

2007 - Queensland patient representative 'World Lymphoma Awareness Day' (WLAD).

Jodies Current Medical Update

• June/2011 - Jodie is believed to be in active remission. However, she continues to suffer from progressive scarring to the S1 nerve, which presents itself as weakness & muscle wastage. Jodie is also monitored for any changes in her health and assisted medically for significant pain post chemo & due to her scarring. Regardless, Jodie is a happy person. making every effort to raise awareness for others who suffer.

• February/2011 - Stem Cell Transplant once again halted due to Neurology opinion - NEW 2nd Neurology opinion believes the problem is PROGRESSIVE RADIOTHERAPY SCARRING & LESION DAMAGE.

• August - November/2010 - Stem Cell Transplant was postponed at the 11th hour, late August. We opted to wait for more evidence on the next MRI, image taken 12 November/10 (waiting on results).

• August/2010 - Transfer to Princess Alexandra Hospital, under a new Lymphoma team.

• June 04/2010 - Fall due to footpath/building & R leg weakening again (0nly 2 weeks after first CYT LP). June 11/2010 7th LP.
  

• Mid-May/2010: Started Lumber puncture chemo & Steroids to halt weakness/pain to R leg.
  

• Late February/Early March/2010 = 2 falls at home, indicated the beginning of pain in the S1/Sacrum & progressive R leg weakness. Admitted to hospital Late April/2010.

• Marrow testing returns a 'No Lymphoma or MDS (Myelodysplasia)' found in the sample. But - poor recovery (post chemo) of Granulopoiesis Cells (mainly Neutrophils), due to suspect bulk toxicities. This means some parts of my White Blood Cells have not recovered well post Chemotherapy.

• December 09/Blood counts not recovering. 3rd NHL relapse suspected, marrow testing commenced.

• July 09/Blood counts should have recovered.

• April 09/Finished 2nd course of systemic chemotherapy, status: STABLE.

• January 09/Commenced 2nd course of systemic chemotherapy.

• December 08/Relapse -lesion now visable on S1 (Sciatic Nerve), through MRI.

• August 08/2nd Relapse of NHL confirmed, start immediate Mabthera therapy & injection chemotherapy into the spine. Become medically retired, leave work immediately.

• June 08/R Leg starts to weaken.

• January 08/R Foot numband toes - no movement.

• November 07/Return to work.

• April 07/Finish 1st course of systemic chemotherapy, status: REMISSION.

• September 06/Original NHL Diagnosis through ER:leave work immediately.

• November 05/Noticable symptoms start to occur, 11 month search commences for medical assistance, medical negligence occurs and Jodie's diagnosis is delayed.

Jodies treatment list of Chemotherapies & related drugs

GY = Grey (Measured/metered radiation).
CVP = C: Cytoxan - V: Vincristine - P: Prednisone.
CHOP = C: Cyclophosphamide - H: Doxorubicin - O: Vincristine - P: Prednisone.
R = Mabthera (Ritixamab).
MTX = Methotrexate.
F = Fludarabine. CYT = Cytarabine.

RADIATION ONCOLOGY

10 dosages of measured GY radiation to large tumour pressing on Sciatic Nerve

CHEMOTHERAPIES AND RELATED DRUGS

2 x CVP (6 treatment dosages chemo & related).

2 x R (2 treatment dosages B-cell monoclonal antibody).

4 x CHOP (16 treatment dosages chemo & related).

4 x R (4 treatment dosages B-cell monoclonal antibody).

2 x R (2 treatment dosages B-cell monoclonal antibody).

REMISSION ACHIEVED - MARCH/2007.

1 x C massive dosage (1 Prep/Stem Cell Harvest).

6 x R (6 maintenance dosages B-cell monoclonal antibody).

RELAPSE - DISEASE S1 (SCIATIC NERVE) IDENTIFIED - AUGUST/2008.

5 x R (5 treatment dosages B-cell monoclonal antibody).

5 x MTX (5 Lumbar Puncture treatment chemo & related).

(2 ADDITIONAL LPs TO HARVEST CSF)

3 x F (3 treatment chemo & related).

DISEASE REDUCED IN S1 (SCIATIC NERVE) STATUS: STABLE - JUNE/2009.

Suspected RELAPSE - DISEASE S1 (SCIATIC NERVE) IDENTIFIED - MAY/2010.

1 x CYT (1 Lumbar Puncture treatment chemo & related).

1 x MTX (1 Lumbar Puncture treatment chemo & related).

(1 ADDITIONAL LP TO HARVEST CSF)

1 x MTX (1 Lumbar Puncture treatment chemo & related)

(Suspected relapse turned out to be progressive scarring to the S1 due to post radiotherapy/disease).

As a result, Jodie's R leg is currently becoming weaker with dropfoot & muscle atrophy, however she uses a cane and a Leaf-Spring ATO splint for foot & leg support.

Total:63 dosages of treatment.

PLUS: (lots of blood product) - (at least) 6 bags of Blood, 2 bags of Platelets and 14 infusions of Plasma (Octogam).