BLOG 27

01 June 2010

Hello concerned citizens (family & friends),

It is a little perplexing to a patient, that the medical scientists one is consulting with are of the same organization, but use totally different angles with different opinions? In regards to the 2 hospitals I am now talking to - I think there are some political aspects in-between hospitals and adopted methods for treatment, in regards to particular Hematological practices and transplant protocols.

We have now consulted with both the professor expert and have a brief opinion of my home hospital panel of Hemaotologists, along with my chief consultant from my home hospital. There seems to be differing opinion between the professor's opinion and my home hospital panel of doctors. Although, we are still gathering, at least 2 further opinions from a BMT (Bone Marrow Transplant) consultant and also the professor's colleagues.

Upon the professor's recommendation, 2 weeks ago, we went ahead with a Lumbar Puncture chemotherapy small dosage of a drug called Cytarabine, which crosses the brain/spinal membraine - within 48 hours of that - pain in the S1 and leg weakness had disappeared. It was confirmed....in my eyes and my consultant. Past this, the professor has recommended several further LP's with a mixture of 2 chemo drugs, followed by the same drugs as a systemic/blood stream administration and finally preparation for an Autologous Stem Cell Transplant, then radiation to the area. He expressed to us, that if we don't do that, it will return. My chief consultant agrees.

However, it is now a game of wait and see, discuss and discuss some more, my condition, my leg and the risk of proceeding with a transplant in my current state vs. the risk of more relapse....further nerve damage AND which hospital should I progress with, in terms of my treatment. This is a very strange presentation for all of the doctors involved with only the professor having seen this before, in this type of condition. It is going to be one of those grey-area decisions that may ultimately be up to me and my family, in the end. It will take us time to sort it all out, between the doctors opinions, family opinions and my own body and what it is telling me.

This tiny piece of Lymphoma, causes maximum impact on my mobility & quality of life....which just makes no sense....however - doctors need to see scans and results and have tissue. A biopsy on the nerve may be the only option to prove that we have definite disease and beat this thing, once and (in my opinion) for all.

I am not sure what I think about it all at this stage - time will tell how we all feel....I want to be healthy, I want to be a normal woman and a undistracted mother without having chemo, medication, side-effects and all that to deal with. Although, I know that there is a reason for everything and I have used all this for good, illness is certainly a grind. This whole battle has made me a strong woman, who knows exactly what she wants and where she wants to go, regardless of what others say. Having gone through what I have been through, I can honestly say now - that the regular day to day bug's that we encounter - the trials - the problems - ARE NOTHING compared to this. AND ditto to raising a child with special needs....is there anything else that can possibly be flung at me? I doubt it. I am not afraid, I don't doubt what I believe - but I have my moments and my days, just like anyone does....however, I am grateful to be here, to be given a second chance. Transplant science is incredible.

Our family was Blessed this past weekend by a church team from our awesome church (Bridgeman Baptist, QLD) under the 'Yes we care' community program - our place was blitzed with large team of volunteers who took care of a lot of odd jobs for us - so wonderful and we love them all for really blessing us!! Thanks team, so much!! We love hearing from you all (thank you for all your prayers) and will do another blog when a final decision is made or we move into deeper treatment. I was touched by this video this week Called '99 Balloons' (CLICK HERE) from a couple, who also took a bad situation and made it into a blessing. Love &

Blessings, Jodster & Family.