BLOG 40

16 July 2014

Dear treasured Family & Friends,

NO PITY OR SADNESS - NO FROWNS OR TEARS
WE WILL STAND IN STRENGTH AND PROMISE
STAND WITH US IN FAITH, HOPE & OPTIMISM
STAND WITH US IN UPLIFTING, POSITIVE EXPECTATIONS.

John 14:1 - Do not let your hearts be troubled. You believe in God believe also in me.

Greg and I are writing to you all to tell you some news, whether you are family/friends/supporters in the USA/Worldwide or Australia we value and cherish your love and interest in our family.

We have only just learnt of a new diagnosis for me on Tuesday, 8th July. As you may have read on my last blog, my right leg has been progressively getting weaker since November, after discussing saving my mobility with my Haematologist, my Neurologist and my Radiation Oncologist + lots of scans - it was decided that scaring of my S1 nerve had progressed and we would try a new medication and possible hyperbaric oxygen dives to supply more blood & oxygen to the area.

A MAJOR CHANGE OF PLANS HAS NOW OCCURRED

On June 20th, it was discovered, via regular blood testing that my bloods were all down (Pancytopenia) - red, white & platelet blood cells. I also told my Haematologist that I had felt throbbing bone pain in my torso, after physical exertion for a couple of weeks prior - similar to when I had previously had multiple injections of G-CCSF to stimulate stem cells for harvest and freezing in 2007. The low blood counts explained this new pain, as my bones were working harder to create new blood cells. I was also more tired and exhausted than normal.

These things were all odd and on 30th June, a bone marrow aspirate was performed. We received the results on Tuesday, 8th July and were quite shocked to learn that I now have a 2nd form of cancer, called 'myelodysplasia'. Myelodysplasia (MDS) is secondary RARE cancer to my original Non-Hodgkin's Lymphoma (NHL). The subtype that I have is: Refractory cytopenia with multilineage dysplasia (RCMD). This secondary blood cancer has been caused by the chemotherapy that I received many years ago to battle my original delayed extensive Lymphoma diagnosis. We knew that this was part of the risk of chemotherapy, however without that original treatment I would not have survived today. Some people can live with MDS for many years, however, due to the lack of certain Chromosones in my testing and also the fact that I developed this, due to past chemo - my medical team need to act quickly and swiftly.

This secondary disease is very rare. The stats state that 4-5 out of 100,000 people contract MDS and it is usually only seen in people aged 60-75. I am currently only 42. When diagnosed with my original NHL, I was only 35 and that disease is normally only seen in elderly people over the age of 70+. In Australia, out of all cancers, Lymphoma is the 6th most common cancer and increasing in incidence with approx. 5,000 people diagnosed every year (out of a population of 24 million). At the time of my original diagnosis I was only 1 of 3 women (in our state) at my age to have been diagnosed with NHL.

We know from original testing that my Lymphoma was caused by two viruses that anyone can catch - however, in combination both Glandular Fever and the common Epstein-Barr virus, caused Lymphatic cell damage and then Lymphoma to develop. This only happens to a very few people who are exposed to these viruses, other causes are linked to chemicals and toxins in the environment that most of us are exposed to. Doctors do not know why some develop these diseases and others do not, even when exposed to the same risk factors. Despite this and advancing research into new treatments for Lymphoma - awareness about the symptoms of Lymphoma, remains unbelievably low - this includes doctors and medical staff world-wide.

Myelodysplasia is also known (in some subtypes) as pre-leukaemia and if not treated promptly will soon turn into AML (Acute Myeloid Leukaemia). So, In order to save my life and potentially fully cure me of both MDS AND NHL – my specialist doctors have suggested that we skip the next expected step in my treatment step (originally an Autologous Stem Cell Transplant, for a relapse of Lymphoma) and go to the next step. My cell's that have been waiting for me on ice, may not be effective enough to keep both cancer's away and keep me in long-term remission or cure me.

When my haematologist met with us on 8th July - we were bracing for the results. My haematologist said 'I have your bone marrow results and they are not very good news'. Immediately, I said to her 'I have Lymphoma in my bone marrow?' - I was half expecting this, due to my symptoms. 'No, you have a secondary cancer (nothing can prepare you for that shock): Myelodysplasia', she said. 'What's Myelodysplasia'? I quizzed - totally puzzled. We had vaguely heard of it - yet, here we were again, similar to our initial diagnostic time in September, 2006 - that time we were both looking at each other, puzzled saying 'Lymphoma - what is Lymphoma?'!!

WHAT IS THE NEXT PLAN?

It's called an Allogeneic Stem Cell Transplant. Instead of using my own stem cells, I will now require donor bone marrow/stem cells from a living donor matching my specific blood type and tissue type. My sister was not a match and this is the case for most siblings. Only 1 in 4 siblings are a match in terms of blood and tissue typing in all siblings, world-wide. The search has already started and my doctors will first be looking in Australia for a match on the AUSTRALIAN BONE MARROW DONATION REGISTRY (http://www.abmdr.org.au). If a match is found here, a nurse will take a receptacle with her on a flight to the living donor's location, where their bone marrow/stem cells will have been harvested, ready for collection.

The receiving nurse will then get back on a plane and fly the iced-up bone marrow/stem cell's back to Brisbane to get ready for transplantation into me. If the right marrow cannot be found in Australia - a search will begin around the world for appropriate stem cells/bone marrow for transplantation, through correct blood matching and tissue typing via the BONE MARROW DONORS WORLDWIDE REGISTRY (http://www.bethemtach.org). The registry currently has 24 million donors in 52 countries around the world. If a perfect matched donor cannot not be found, a close match will be used to save my life. Doctors may also choose to use a partially matched living donor from my extended family.

Prior to a 'Stem Cell/Bone Marrow Rescue' taking place - my diseased bone marrow and body will be conditioned with very strong chemotherapy and possibly radiation to kill off and destroy my old marrow. This is a very detailed process and will be performed in a sanitary and isolated bone marrow transplantation unit @ the Royal Brisbane and Women's Hospital (RBWH), Brisbane, Queensland.

During this process, I will be confined to a small transplantation apartment, away from everyone, except doctors and nurses. This will be to protect my immune system from infection. During the transplant - I will also receive a lot of blood and plasma donations from regular blood donors, to keep me healthy and strong.

WHEN DOES MY TRANSPLANT START AND WHAT CAN YOU DO?

We have now spoken to a new stem cell doctor to start booking in the process. As we have just caught this and the disease is in the very early stages, my condition is not as urgent as someone with full-blown Leukaemia.

The process may start within 1-3 months or soon after, from now. THIS COULD BE MY CHANCE AT A FULL AND PERMANENT CURE FROM BOTH DISEASES: MDS & NHL. Once I have a new blood system, I will have a new birthday and a brand new life, thanks to a gracious donor somewhere in the world :) In the meantime, my symptoms will be watched very carefully by my hospital.

We would love you, your friends, and loved ones to consider doing the following to help others in my position:

PLEASE activate your prayer groups and prayer chains we need every ounce of prayer as our family faces our next challenge.

Pray for the following points:

Peace in the midst of this storm.
Spiritual support from our networks.
Adequate Emotional & Mental Health support our whole family.
Practical support for our family: meals, physical assistance.
The perfect 100% bone marrow match.
A smooth transplant process, with little problems,
No/Little Graft vs Host Disease after Transplant. Complete cure and a permanent solution.
(We were told by our new doctor that new stem cell or bone marrow donors probably won't be ready in time for our current need, however - joining the registry will help many more patients in the future. Blood and plasma donation certainly will help me directly and other patients, as I will need a lot).

AUSSIES: (If you are eligible to do so) please contact your closet AUSTRALIAN RED CROSS Blood Bank to start donating blood and consider doing so regularly. Consider also asking to register yourself as a stem cell or bone marrow donor for anyone requiring stem cells/bone marrow, in Australia or worldwide. All costs for becoming a donor are covered by insurance and the transplanting hospitals.

AMERICANS/INTERNATIONAL FRIENDS: (If you are eligible to do so) please contact your closet AMERICAN RED CROSS Blood Bank or another local Blood Bank to start donating blood and consider doing so regularly. Consider also asking to register yourself as a stem cell or bone marrow donor for anyone requiring stem cells/bone marrow, in Australia or worldwide. All costs for becoming a donor are covered by insurance and the transplanting hospitals.

Stay connected with the Guerrero Family via their websites, their blog and their social media pages.

When I am admitted, as health permits - I will be vloging on YouTube and possibly blogging.

WE WILL BE EXPECTING THE BEST, BEING REALISTIC ABOUT THE RISKS AND TRUSTING OUR GOD TO LOOK AFTER US WALKING WITH US ALONG THE WAY - WILL YOU WALK THIS PATH WITH US? BELIEVE WITH US? STAND WITH US AND PRAY WITH US?

Thank you for reading,
Much Love,
Jodie & The Guerrero Family xx