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December 11, 2004
Anaplastic gemistocytic astrocytoma
Dear Family and Friends,
We returned back home from Brisbane today. It is good to look out the back windows and see the cows in the paddock grazing on lush green grass as they always do, to be reunited with Chloe after four nights away and to feel the comfort of our home.
As we had anticipated, Peter had a brain biopsy this past Wednesday. The procedure though very intense went well. The diagnosis came in yesterday afternoon. Peter has an Anaplastic gemistocytic astrocytoma. The doctor's first words to us were, "We are in trouble." The tumour is an agressive grade III (of 4) glioma. It does not respond to chemotherapy and is non curable from the western medicine perspective. Life expectancy untreated is 2-3 years. It is possible that radiation therapy could extend Peter's life expectancy some what but more importantly it could keep Peter's brain function from deteriorating as rapidly as could happen without the therapy. That means that we could possibly have the Peter we know for a longer period of time even if his life expectancy is not extended.
The tumour is inoperable due to it's location. Removing the tumour would remove Peter's memory and speech functions. Not an option.
The deterioration we would be likely to see as a tumour like this progresses is loss of short term memory followed at some point by loss of all memory, deteriorating speech and possibly paralyzation of the right side of Peter's body.
We will meet with a radio oncologist this coming Wednesday as well as with a medical oncologist and the neuro surgeon. Our next step is to determine the risks and benefits of doing radiation therapy and come up with a treatment plan. My brother, Dan, is an anesthesiologist who will be able to consult with a colleague of his whom is a radio oncologist so that we have a second opinion and to do a comparison of what treatment options are available in the States versus Australia. At present we are very impressed with the hospital and staff we just experienced in Brisbane. They seem very state of the art, competent and human in the best sense of that word.
This is of course shocking. There is no pleasant way to recount scary news. I felt compelled to tell you the medical facts first and now I will tell you how Peter and I are.
Peter has such a deep and quiet strength. He is moving through each day with a grace that amazes and impresses me. He is deeply, deeply sad about the implications for Chloe and Dylan. He wants to see his children grow up and they are the biggest motivating factor for him to fight this illness against all odds. He has been and continues to be in gratitude for all the abundance in his life and all the love that all of you are showering upon him. He sees opportunities in this journey for growth (of the non tumour kind) and healing. He cries. He expresses his love a lot and he delights in being with the kids more than ever. He has been expressing interest in writing you all himself when he has a bit more energy.
I am devastated, ripped apart, and terrified at times. I find myself having to hold the statistical probability regarding Peter's life expectancy while also opening to unconventional resources and a miracle. I have felt the most deeply satisfied and warmly content in my life in the past few years than I have ever before. Peter is my best friend, my beloved and the father of my children. It took me a long time to find my life partner and I can't bear the thought of losing him so soon. The thought of watching Chloe and Dylan lose the father they love so deeply is completely overwhelming and heart breaking.
I am also starting to feel angry and that anger channeled brings strength. Peter had a vision of me a couple of days before his biopsy. He said he was lying on the ground with the children sitting by his side and I was standing at full height in front of him with a samurai sword fully drawn above my head in the ready stance. I cried when he told me for that is a very good description of how I am feeling a lot of the time.
Peter and I both have a feeling of destiny about facing this illness together. Our intimacy is deeper than ever. I feel sure that much healing will come of it no matter what the outcome. And miracles do happen.
My request of you is to keep praying and sending healing energy. Although this may stir up all kinds of fear and concern for Peter and our little family, lets not let the fear take root in a big way. Please envision Peter guided to the right resources for his healing. Please envision Chloe and Dylan growing up healthy and whole with their mother and father by their sides.
If you have any resources that could help please email me. I would just ask that you help me by researching the back ground of potential systems of healing or cures so that there is sufficient grounding in evidence and/or details pertinent to Peter's condition (which I named above). It takes a lot of time and energy to pursue possibilities so I appreciate you helping me with the leg work if you feel called to.
We are so grateful for your outpouring of love and care. It is an understatement to say thank you from the bottom of my heart.
Sending much love,
Jennifer
Posted by Jennifer at 02:01 PM | Comments (0)
December 04, 2004
I spoke with one of the neurosurgeons in Brisbane yesterday
Dear Friends and Family,
I spoke with one of the neurosurgeons in Brisbane yesterday and have more of an idea of how this coming week may look.
Peter will be admitted into the Princess Alexandra hospital in Brisbane on Tuesday morning. We have been asked to bring all Peter's scans and all hospital and doctor reports so that his entire case can be reviewed. After a full assessment and probably more scans done they will decide a course of action. It is still highly likely that Peter will have to have a brain biopsy but it will not be decided until their assessment is complete.
I liked the doctor I spoke with. He was human, compassionate and left me feeling like we are in competent hands. I feel positive today even with my tears ebbing and flowing as my heart expands and contracts.
Thank you all for reaching out to touch my family and our hearts with your beautiful emails. I am strengthened by your care and by your positive intentions for Peter's healing.
With much love,
Jennifer
Posted by Jennifer at 02:00 PM | Comments (0)
December 02, 2004
Yesterday Peter had a second MRI scan done to measure progress
Dear Family and Friends,
I find myself at the computer again to give you the latest update on Peter's condition. As most of you know we have been following the working diagnosis of herpetic encephalitis for Peter's sudden illness for the past five weeks.
Yesterday Peter had a second MRI scan done to measure progress (since we haven't had a difinitive diagnosis) and today we had a follow up with the neurologist. It now has been concluded that Peter does not have herpetic encephalitis but a tumour in his mid temporal lobe.
Peter will have to have a brain biopsy done on the tumour at a hospital in Brisbane ASAP to determine exactly which type of tumour he has. It has grown in the month since the last MRI and is causing him more seizures which luckily are mild so far due to the anti seizure medication he is on. Right now the conjecture is that he most likely has one of two types of tumour and the only way to know for sure is to look at the tumours genes, hense the biopsy. One of the two most likely types is treatable with chemotherapy and radiation. The other type is not treatable.
Peter has taken the news with amazing calmness. He spent the day in a fairly stable state. I am quite emotional and trying to remember to stay in the moment and breathe. Right now anything is possible. Finding my center amidst the new finding comes mostly from our beautiful children demanding my attention and reminding me that life, Peter and our family are right here, right now.
We need your prayers more than ever. Thank you for your care and much, much love to you all,
Jennifer
P.S. Tomorrow, December 3rd, is Peter's 36th birthday .... may he have many more.
Posted by Jennifer at 01:58 PM | Comments (0)