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Update - 31 October 2003
Dear All,
On Thursday 23 October 2003 I saw through the eyes of someone else, someone going through rough times, and saw a world not of adversity but rather delight, and then, through such vision and feeling, wetness filmed my eyes. Against a reality of not being able to venture out for an evening without fear- due to pain or other adverse issues related to cancer, Wendy dressed up and stepped out for an evening originated by Keith and Sally G. who allowed Wendy to live part of a dream. We where picked up in a saloon with a French driver, who took us on our journey through the magic which is Sydney where the lights provided a fairy ambience. My view on the evening was through Wendy's appreciation, as she sampled delights I take for granted- things once undertook with little understanding how such things are privileges. Our return home was as if from a fantastic black tie ball, although Wendy did not leave a glass slipper behind. While the midnight hour beckoned many hours after our return, the evening was "magical" and Wendy was buzzed to the extent she had to describe in detail the evening to her parents, and had difficulty getting to sleep due to excitement. We have again reached a status where Wendy, with some exceptions from pain, is able to venture, and perhaps our Thursday outing may be a further upward trend from the double dip lows over the last 6 months. "Perhaps" remains a word of opportunity.
Last Tuesday 28 October Wendy received Herceptin. After reviewing blood results, the oncologist decided on a further weeks respite to assist the white blood cell building program and skipped the Navelbine. Wendy completed scans today. The results remain mixed. The CT was by axial images of the brain, chest, abdomen and pelvis with the study today compared with the examination dated 8/9/2003.
"Findings: The contrast enhancing lesions present in the left frontal lobe and the left cerebellar hemisphere persist. They are probably unchanged in size. There is an enhancement posteriorly in the left cerebellar region. I am uncertain whether this represents a new metastasis or prominence of the enhancing structures of the tentorium. MR would better demonstrate this. No other change.
Widespread hepatic metastases are present. The overall extent of hepatic disease has not altered.
No free fluid is present in the abdomen or pelvis. No retroperitoneal adenopathy.
There is a moderate sized right pleural effusion. There is a nodular pleural thickening present in both hemithoraces. This is perhaps a little more marked on the left side. Abnormal soft tissue is located adjacent to the left cardiac apex in the mediastinal pleura. This appearance is consistent with metastatic disease. There are some small mediastinal nodes unchanged from the previous study.
Abnormal soft tissue is presenting the medial half of the left breast. This was present in the previous study though it does now appear to be more extensive.
Comment: There is evidence of widespread metastatic disease involving the brain, pleural cavity, mediastinum and liver. There does not appear to have been a significant change in the extent of the metastatic disease since that time."
In spite of all that is wrong, it is possible to look at the scans and what they tell us, and then compare the results to the glimpse of another reality, a reality of magic on our special Thursday night. And we realise that perspective is about choice, a choice between sometimes opposing life descriptions. On that Thursday night we experienced wonder thought lost from the growth to adulthood, to the loss of innocence of childlike perspective because of our peril. Cancer has seen us lose much, yet it is not an enemy we shy from but one we continue to stare down, particularly the element relating to fear. We see opportunity to reclaim much that has been lost- and after our wonderful evening in the centre of Sydney, Wendy and I will be making special claim to try and gain other special nights, other special days, and shift perspective to see wonder from what many have as normal expectations.
We are not unique, and others, albeit different circumstances, tell stories of deliverance. I read the other day a story about restoration from devastation- of a family name almost destroyed, surrounding a women younger than Wendy. It was a recount of persistence, with one of the highlights of the short story coming with Boaz advising Ruth in 2:12 that, after so much turmoil and disaster in Ruth's life, she has sought refuge under God's wings and God would respond. Later, the imagery of wings and refuge continues as Ruth comes under Boaz's marital and redeemer authority, preserving the family line that would have been lost apart from observing God's way. Ruth is about restoration, about fulfilment, with a hope of destiny shaped by a woman choosing to do the right thing- and persevering when it would have been easy to give up and go on other paths. Ruth, and those around her succeeded, not only for their own futures, but also that of a nation under God's wings of refuge. Ruth is more than her story, and more than her grandson King David, or her great grandson King Solomon, and continues with influence generations later with the birth of Jesus.
We continue to seek shelter under His wings. We poke our heads through the warmth of God's refuge- a refuge built and surrounded by the prayers of many. And Wendy's face feels a warmth and tingle as the gentle drift of Spirit inspired prayer continues to wash and flow from across the world, without ceasing. She is inspired by the women who prayed for her as she stood in a large auditorium at the "Women Dreaming" conference held at CCC Oxford Falls, where she attended as the guest of another woman also named Wendy, and felt the gentleness of over 1700 inspired women's prayers surround her last Friday. We feel nurtured and special that many have given much, and whispered; sung; presented, and praised God for our needs and circumstances. In James 2:26 the claim is made that faith without action is dead- we testify that we are recipients of much faithful action, and we remain humbled by being recipients of people's generosity in many ways.
We continue to look to the hill over-viewing our various scenes, whether pleasant dinners out or painful experience, against hard but real words in scans, and see our living and resurrected Saviour standing with us- reading the scans with us, sharing our disappointments with results, and laughing when we have a wonderful evening out. We see a man born with human frailty and human needs, yet also God, with resolute determination to assist us and our choices against sin and disease. We know that he walks beside us, cries for us, shares our burdens, and throws down our fears with a confidence of someone who has faced daunting and tear drenched human experience, backed by the Father's love. We cling with passion mingled with hope to drift wood that is the Cross in a seemingly endless sea- clinging to what we know is our life preserver- both now and for eternity. We claim the Cross-as our stand and rallying point, and thank those who have taken places beside us in prayer and other support.
We do not know outcome. We do know our choices. To pray is choice.
Cheers, in gratitude and thanks,
Graham for Wendy, Emma, Joshua and Samuel
Update - 21 October 2003
Dear All,
Wendy has had her first opportunity, unfortunately today, to use the breakthrough pain management lozenges- she tells me they taste like chuppa chups- very sweet! If the children get them, they will be knocked out. Given Samuel's recent tantrum behaviour, we are sorely tempted, although at $33 a pop, we resist... The chemo today was not aggressive, with the administration of Herceptin only. Today's low-key regime will assist in building Wendy's immunity levels ready for the bout of aggressive Herceptin and Navelbine scheduled for next Tuesday. Unfortunately, Wendy is in significant pain discomfort- and it is not linked to the chemo. The pain is overall, and despite the best efforts of fentanyl patches, paracetamol and chupa-chups type break through pain lozenges, she remains in some discomfort, although always responding with a smile to any questions posed. We are hoping that Wendy is well enough to attend dinner on Thursday night. Keith and his wife Sally have organised a very nice dinner in Sydney's central business district, probably the first dinner by ourselves for maybe 18 months. A car will pick us up and Wendy is certainly looking forward to the night out- although I do not think we will be kicking up our heels!
As previously mentioned, the cell line growth from the brain tumour cells was successful. The scientist in charge advises that Wendy's brain tumour cell line continues to grow, although the schedule for testing has not been finalised. When the testing is undertaken, it may take time for me to advise of results, and indeed even company details, as some commercial sensitivity may exist. I will be seeking the company's OK to let people know how it goes. The research company is a Melbourne-based drug discovery company focused on the treatment of immune diseases and cancer. The company specialises in discovering new drugs that can inhibit enzymes known as kinases, a relatively new class of drugs, and with some good planning will be undertaking human clinical trials with one of their compounds mid year 2004. Use of one of its lead molecules in an animal model run by a contract research laboratory saw human prostate cancer cells grown within the prostate of a mouse and then treated with the lead molecule for 4 weeks. The treated animals had significantly reduced tumour loads relative to the control animals, with some animals having up to a 70% reduction in tumour size. Of great interest to us are the comments in an annual report relating to this family of compounds: "Studies in other cancer types such as leukaemia and melanoma demonstrate that this family of molecules may have broad utility in fighting cancer and the novel mechanism of action should also allow further patent applications adding significantly to the value of this discovery."
Of interest, Herceptin, which Wendy receives, is also based on inhibiting a kinase enzyme. After a prayer group wrote to us suggesting we test for HER-2, and we took the request to our oncologist, Wendy's original lymph node biopsy was re-examined and tested positive to HER-2. The presence of a greater than normal number of copies of the HER2 gene in a cell results in HER2 over expression. HER2 stands for human epidermal growth factor receptor 2. HER2 is a gene found in every cell of the human body. The purpose of the HER2 gene is to help a cell divide. This happens when the HER2 gene tells a cell to form a protein, the HER2 protein, on the cell surface. The HER2 protein receives a signal and sends a message to the centre of the cell that it is time to divide. The HER2 protein is also called the HER2 receptor. If something goes wrong, a change can occur that causes too many copies of a certain gene to appear. If extra copies of the HER2 gene appear in a cell, the gene can cause too many HER2 proteins, or receptors, to appear on the cell surface. This is referred to as HER2 protein over expression. Patients who are considered HER2-positive have HER2 protein over expression. Cancers that over express the HER2 protein grow and spread more rapidly- and hence, in many cases have poor prognosis. Wendy was initially given 6 months, given the aggressive and extensive nature of her cancer. Herceptin (Trastuzumab) is a therapy for HER2-positive metastatic cancer. Herceptin works by specifically targeting tumour cells that over express the HER2 protein. Herceptin is believed to function in three different ways. Firstly, it blocks tumour cell growth. Secondly, by signalling the immune system to take action. Herceptin attaches to the HER2 proteins (receptors) on a tumour cell. Then certain immune system cells, called natural killer cells, are attracted to Herceptin. The natural killer cells detect that the cell is abnormal, and attach to Herceptin. The natural killer cells kill the tumour cell. Thirdly, Herceptin works with chemotherapy, in Wendy's case being Navelbine. While Herceptin and chemotherapy work in different ways, when administered together, the two drugs may form a partnership. If you have been able to follow the preceding, what Herceptin has been for Wendy is, apart from jargon, "wonderful". It is also very complex. Full details are found at www.herceptin.com
Is the work of "our" Melbourne based research company part of a miracle- using human agents to perform something not previously possible? Miracles are not diminished simply because God uses natural events, or human agents- miracles remain in our prayerful hands. It is our perspective that ultimately drives what we believe and then how we act. In spite of hardship, Wendy and I see God's hand, and we choose to trust in Him. It is only with evolution that we will know if we are in the midst of a "miracle". Miracles have outcomes, and we do not know final outcome. We continue to pray and trust. Outcome is something to reflect about once it is past and then we know how events fitted together, and then at some distance from the events, we may say, "wow, wasn't that incredible, and wasn't it obvious that a miracle was unfolding?" While Wendy and I have glimpses of something shiny under a dust cloud, we see innumerable obstacles, even should high activity be found against the cell line that will be tested; even should the micro-array tests at the Peter Mac Institute in Melbourne through gene sequencing find the elusive primary. Many things become clear with hindsight, and living through them we live day to day. And day-by-day we appreciate all the more the many who have tried to assist, who have volunteered in this world of looking after self to step out and assist in carrying us. We have found "community" very much alive, very much in good health. Irrespective of outcome, our day-by-day views are wonderfully coloured by the privilege of being taking in by many wonderful people willing to give us a go, to try in spite of odds- to want to get involved.
Wendy and I continue to seek the missing sentence that I mentioned in early August 2003, from 2 Corinthians Chapter 1, verses 8 to 11 for Wendy and our circumstances, "He has delivered Wendy from such a deadly peril, and he will deliver us." I simply do not know how God will answer the prayers of the many, although I know that He has, does and continues to answer, although the full appreciation will only become clear with the passage of time. There are another couple of sentences in versus 10 to 11: "On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favour granted us in answer to the prayers of many."
The people wrote of their deliverance in 2 Corinthians Chapter 1 after they knew outcome. While they were living through adversity they did not know if they would survive. It was the prayers of the many that had made a difference to their perilous circumstance. How the mirror of time highlights us against a similar adverse backdrop two millennia later remains for us a mystery. Again, I pray that we too may have the privilege of writing such immortal words of delivered hope.
Those in prayer continue to grow. I add a few people each week to the distribution list, and some come in unusual ways. Lynette advised: "I was researching for an assignment when I happened upon your site. I felt that I was invading your personal space but felt impelled to read on. I too am a nurse and a mother. Your faith is reaching out to a great deal of people including me and so I thank you for sharing what you have with us and for the gift of your faith. I will add your precious family into my thoughts and prayers." And from Wendy and Jim H., who write: "We have been receiving updates via our daughter, Sheena. We are members of St John's URC, Kenton, UK... This is just to let you and family know that Wendy is on the list of people who are unwell and for whom we are invited to pray in our weekly notice sheet. Our love and admiration to you all." Wendy and I continue to be humbled by those in prayer for our needs against circumstances- and the call for prayer has seen a response beyond anything we could have anticipated.
Isaiah 53 tells us that all sin and infirmities have been laid on the Cross, and we seek this truth in our cries in prayerful assistance. We have firmly asked that cancer be nailed to the Cross of healing. It is who we are. It remains our stand. It is what we have. We remain inspired to live in and with inextinguishable Hope.
Cheers, remaining in Hope,
Graham for Wendy, Emma, Joshua and Samuel
Update - 9 October 2003
Dear All,
Wendy has recovered from the bronchitis, and the white blood cell count at Tuesday's chemo was in the normal range. While liver function tests have some indicators "up", others were "down", and the liver results overall are directionless. Wendy was strong enough to receive the full dose of Herceptin, Navelbine, and Aredia bone hardener. While increasing the paracetamol, generally speaking, the regular pain management has proved sufficient, and an Irish nurse e-mail recipient suggested we try "Op-site" dressing to secure the fentanyl patches. This suggestion has worked remarkably well. We have some special trial pain lozenge's called Actiq. This is a new drug and limited by Federal Law to investigational use. Wendy will suck one lozenge for breakthrough pain. To date, pain thresholds have not been breached and we have not had opportunity to trial the drug.
Some interesting developments are occurring on the research front. A cell line has been grown from Wendy's brain tumour. While now in the hands of the research company, it appears greater quantity is required and the scientists are attempting to grow sufficient material. People's prayers in relation to the pioneering work would be appreciated, as well as the application of the cell line and the cell lines usefulness.
I should highlight that the brain tumour for the cell line was "harvested" by a PhD student researcher who was not tasked with the activity until after the neurosurgery had begun. In fact, two Professors were involved on the morning along with a friend who made some pleasant telephone calls asking for assistance. Ethics committee approval was sought with retrospectivity for the actions (very unusual), based on the fact that we had requested the cell line. The PhD researcher "Craig" advised me as he was going into the operating theatre to collect the tissue that the cell line had to begin immediately and even with all going well, many technical issues existed as to why the line would fail. To his knowledge, this was the first time a cell line would be attempted to be grown from human brain tumour in his Institute. Irrespective of outcome, I ponder the incredible support on that morning of 28 July 2003, the amount of corporate and individual prayer, including meeting people who came to the hospital to prayer in the foyer for Wendy. Subsequently, the attempt to grow the cell line attracted interest, with a number of PhD qualified persons visiting Craig over the ensuing weeks and offering advice on gaining optimal results. It was one of these visitors who suggested we authorise the Institute to send some frozen tumour (not related to the cell line) to the Peter Mac Institute (Melbourne University) for microarray analysis- research that is being undertaken. I add that the growth of the cell line has nothing to do with stem cells- a misnomer someone erroneously made to me a few weeks past.
I mentioned some e-mails ago that my favourite hymn is found in "The Australian Hymn Book", number 109:"Tell out, my soul, the greatness of the Lord!" The author of this hymn is Timonthy Dudley Smith, who has personally sent a book to our family entitled "Lift Every Heart", 'Collected Hymns 1961- 1983 and some early poems', by himself, having sent the book from his home in England to us through the Anglican Bishop to the Australian Defence Force, my friend Rev Dr Tom Frame. Timonthy Dudley Smith advised Tom that he and his wife are in prayer for our circumstances. We are grateful, and somewhat honoured given my appreciation for Hymn 109, and I took time out to sing to Emma and Joshua the moving words of "Tell out, my soul, the greatness of the Lord!" despite the fact I cannot sing for quids. Emma thought I was wonderful (give another 10 years and I think Daddy will lose the shine currently enjoyed!).
I would like to repeat just one of Timothy Dudley Smith's readings he suggested to us, found of page 135 of his book, which he has entitled "Safe in the Shadow of the Lord", based on Psalm 91.
"Safe in the shadow of the Lord
beneath his hand and power,
I trust in him,
I trust in him,
my fortress and my tower.
My hope is set on God alone
though Satan spreads his snare,
I trust in him,
I trust in him,
to keep me in his care.
From fears and phantoms of the night,
from foes about my way,
I trust in him,
I trust in him,
by darkness as by day.
His holy angels keep my feet
secure from every stone;
I trust in him,
I trust in him,
and unafraid go on.
Strong in the everlasting Name,
and in my Father's care,
I trust in him,
I trust in him,
who hears and answers prayer.
Safe in the shadow of the Lord,
possessed by love divine,
I trust in him,
I trust in him,
and meet his love with mine."
Words relevant to us.
A significant battle Moses oversaw in Exodus 17 illustrates that God does respond to human action. While Moses held His hands up to God, the troops rallied, and were winning against the Amalekites. When Moses grew tired, for the battle was an all day affair (and anyone who has tried to keep upraised hands, maybe holding a stick for more than 15 minutes may attest- it is very strenuous), and lowered his hands, the Amalekites considered this their rallying point and began to dominate the battle scene. Two supporting characters assist Moses, by moving a stone for Moses to sit on, and then standing beside him holding his hands high and steady until sunset. The response from the troops is dramatic- Moses hands kept morale up, kept the troops in the fight- or was it God's intervention? While Exodus dramatically paints and focus's on God's intervention, the choice of what we see remains ours. The event illustrates strength that prevails, and whose strength we should rely upon.
My perspective shifts to those supporting arms raised high. These arms are supported by the many in prayer for our reality. Many are holding our families' hands high, and steady. Prayer continues to sway God, by God's own agenda, and we seek and petition Him to save us from the primary battle with cancer and its complications. The complications being in so many forms- from pain, secondary problems via immunity weaknesses, blood, liver issues and the like, as well as psychological and material consequences for not just ourselves, but also for carers and others. Those arms are also being held by those involved at the very cutting edge of cancer research, who have felt touched by the human element of cancer, continue to see the potential of Hope delivered, and strive to make a difference- a difference for many. And I focus on strength that prevails, strength we should rely upon, strength that makes a difference in some very technical matters.
After the battle, Moses is told by the Lord to write the events on a scroll to be something remembered. Knowing that God may be swayed by prayer to intervene, would people pray that God takes action such that His words, somewhat modified from Exodus 17 to us are: "Write these events down as something to be remembered and make sure that others hear of it, because I will completely blot out the memory of cancer from under heaven."
Wendy is feeling like a fresh spring of water about to burst forth, and continues to have joy despite the circumstances. As per the recurrent words in Timothy Dudley Smith's poetry, we trust in Him, we trust in Him, who hears and answers prayer.
Cheers,
Graham for Wendy, Emma, Joshua and Samuel
Update - 1 October 2003
Dear All,
We came within a whisker of Wendy being admitted to hospital yesterday. Wendy has an infection that since Sunday has rapidly gone to the right lung. Given her low immunity, and the obvious infection, the oncologist elected not to give the Navelbine. As he said, there is no good time to get a lung infection, but now is probably the worst time given our need for aggressive chemo treatment. Immediately after the Herceptin only plus some fluids, and blood tests that showed low neutrophil levels, Wendy went for urgent X rays of the lungs. "Luckily" it turned out to be only Bronchitis- if it was pneumonia Wendy would have found herself enjoying hospital food (again) along with intravenous anti biotic. She remains on two types of anti biotic tablet, both very strong. I did not understand what low neutrophils meant, so I asked a friend who explains, "Neutrophils are the white cells which fight acute (bacterial in particular) infections. Other white cells include lymphocytes, eosinophils, basophils and plasma cells. There are many mediator (molecular) cascades involved in the immune process (e.g. antibodies, leukotrienes, interleukins....100s of molecules discovered each year) but these neutrophil blighters are central to mopping up the bugs. 0.9 (normal 4-11) means Wendy will have to be cautious with contacts, food etc and report to hospital if she starts to get crook. Or should I say crooker." I like Richard's reference to "blighters"! It brought a smile in that it was one of the few words I could understand!
Wendy heard a story on the radio (FM 103.2) the other day to which she related. Although I have modified the scenes and characters, it is a story about a shipwreck. Only one family survived. The family struggled to shore on a remote island in the subantarctic. The island's most friendly inhabitants were noisy king and gentoo penguins along with fur seals. The family gathered, gave thanks for survival, and further asked, "please Lord, send rescue, save us from this lonely island (of cancer?) where we have been marooned". But no ship came to the rescue, and the occasional sight of killer whales in a bleak ocean of hopelessness provided no inducement to try and build a raft. The island nevertheless provided a Spartan existence, with lovely squid soup (and some inshore fish called nototheniids- yuck!) for the family dinner. The lifestyle, by no means ideal, became a way of life. Off course, the 6-year-old girl was simply told to eat what she was given, and after significant protest managed to eat it and not complain (much)! Finally, a little hut was made from the shipwreck itself, providing a somewhat semi-comfortable arrangement in the shivery artic winds. It was cold, and the sun never seemed to give enough warmth against grey skies with many storms, and so the father built a hearth and using some waterproof matches from a survival kit provided a wonderful indoor fire.
One day the youngest member of the family raced off, and the family in some panic went to look for him. After finding him they came back to the dwelling. They found the small hut well on fire! They watched in desperation as all the food, all the resources they had gathered went up in a huge plume of smoke and flames. The family, distraught, turned to God, "why have you allowed this to happen? Surely this is too much for us?" They sat down, pondered, and wept. Night came, a very sad, difficult and long night where they huddled each other for warmth, without the benefit of the makeshift but nevertheless marvellous hut around them. Throughout the long night, in and out of a dozing sleep, the icy Antarctic winds encircled and whistled.
With the first light of artic dawn, however, they awoke to the sound of an Antarctic research vessel coming to the island! Rescue had come! The family rushed down to the rocky shore to meet their rescuers, "how did you know we were here? Why did you come here to this remote island?" The ships crew replied, "we saw the excellent smoke signal that you set up- what a fantastic idea and how wonderful you sent the signal at exactly the right time!"
The radio commentator, albeit presenting a somewhat different situation and placing the marooned survivor on a far more pleasant tropical island compared to my imagined winter island of cancer existence, concluded that the next time your little hut is burning to the ground, remember that there may be a bigger plan and quoted from Roman's 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
Wendy and I continue to look at the glowing embers of our hut, and ponder, and sometimes we cry. Since last Sunday, our focus has been on a scene of further pain and discomfort, and I guess associated feelings (for me) of a "little" despondency. Today, the anti biotic seems to have provided a marginal benefit, and again we take strength to pray for a miracle, to say with the authority vested with the church and hence ourselves, "cancer be-gone!"; to continue the journey of conquest against a foe of legend in a land dominated by its fear. To continue our march around the walls of Jericho, formidable double layered and ancient walls of cancer in our and others lives, and looking our obstacle in the eye as we circle, simply continue in prayer- in spite of a very formidable enemy, knowing that God may do anything, but still not knowing what comes next. We cannot see ahead, we cannot make any plans, and simply have to trust and pray, resting in Him, chorused with the prayers of the many. Yet we can look back, and looking at past benefits, know that a secure future waits.
Please pray for rescue from our winter island of cancer.
Alison will be leaving our employ on 19 December 2003 to apply skill sets gained from her TAFE program on secretarial work- leaving the children with heavy hearts. We cannot manage alone, and hence prayer in relation to our Mary Poppin's Mark III would be appreciated (Mark 1 being the lovely Irish world tour backpacking couple Beverley and Wilson, Mark 2 being Alison, and who for 2004?).
As mentioned in my last e-mail, I am enjoying some time out from work for a few weeks, and earlier today was listening as Emma and Joshua were playing "Snakes and Ladders". Their excitement and laughter with "cough" Wendy as they all participated, provides our sojourn with an overlay of icing to our lives. It is good to remember laughter- and recall that the down times do not mean we cannot have joy.
In continued Hope,
Cheers,
Graham for Wendy, Emma, Joshua and Samuel