BLOG 14
26 March 2009
I thought it was time for an update, as I have had some people asking what is happening & how I have been. I have some very specific prayer points also, so if you want to help us (keep reading through), prayer is always the best way to intercede for us with the Heavenly Father, who always takes care of our needs. My Fludarabine Chemo Round 2 is now finished, 10 days of nausea, constant exhaustion, 4 days of Neutropenia (http://en.wikipedia.org/wiki/Neutropenia). I have 2 more rounds of this chemo left, then we schedule an MRI to see if the disease has regressed.
If regression has occurred, the plan may be 1 or 2 more cycles to knock it on the head. If the disease is still visible, we will then prepare for even stronger chemo, where I will be in the RBH (Royal Brisbane Hospital) for a long time, then progress to transplant. In the meantime, whether my blood counts are high or low, I continue to wear a surgical mask in public to protect my immune system. I have developed a low level of antibodies/immunoglobulins. This greatly effects my current ability to stop catching & rid myself of infections. As with this week, Anna came home with a cough & cold & very quickly, it become a roaring upper-respiratory infection & Pharyngitis in me, which I am currently fighting with antibiotics. To try to keep my anti-bodies up,
I need 'Immunoglobulin Replacement Therapy' involving one to several bags of plasma (through blood donations) -- one bag alone consists of about 100 people's plasma & is very hard to get. My next lot of chemo starts the weekend of Saturday, 4th April/09--as long as my body is infection free. The Queensland medical board came my home about 3 weeks ago & spoke with me for about 2 hours, regarding my initial problems in getting diagnosed -- I will find out the results of their investigations through their sub-committee & the board in the coming weeks.
The process of conciliation is also being looked at -- this is a voluntary process and from all of this, if nothing else comes of it....it has raised considerable awareness within many circles, regarding the need for earlier diagnosis for blood cancers. I have also had some success in gaining Anna Bligh's (Queensland Premier) attention & I am now awaiting an appointment with her new health minister to discuss ways that we can change/reform our state health system to help more people get diagnosed sooner.
We are also waiting on doctors reports for TPD insurance claims for Jodie, as she had 2 prior to diagnosis. Claiming Total & Permanent Disability is not nice, but we feel we have to & that my situation fits the bill. Please pray for the following: Disease regression & cure, Less hard nausea, pain, neutropenia, exhaustion & other chemo symptoms. Less infections. More antibodies and/or 'Immunoglobulin Replacement Therapy' thru RBH. Physical & mental energy & stability for Greg & the girls, as we face this.
Easy & fast medical board/complaints commission successful investigation. Successful advocacy opportunities through the State health office. Successful TPD Insurance process & finalisation. Financial/Family provisions & blessings as we need, in all area's. When I am well, I am happy to speak/chat with anyone who needs to discuss cancer, hospital, patient rights and general health issues, via Skype, as needed. Thank you for all for your continued love and support.
Blessings 2 U, Jodie G