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Email Update - May 2003
Update - 29 May 2003
Dear All,
I once saw a summary of some military performance reports- in terms of interesting one-liners. One stands out. "This Officer has hit rock bottom- and has begun to dig". Lately, I feel we have started to dig.
Wendy told me she "existed" today.
My initial understanding was that the radiation treatment was very specific. Reality is that the radiation treatment is for all the brain; with intense focus on the two known tumours being reserved for the last three blasts. For the lesions to show up on the scans, they have to be a certain size. As the cancer cells grow, it may metastasise to other areas- and other cancer lesions commence. While we know of two tumours, there remains a chance that others may exist. As such, the radiation is very diffuse across the entire brain to get any other potential cancer "seeds". Rapidly growing cells are particularly susceptible to radiation, and hence potential "other spots" should be cleared. The downside is the destruction of good cells- the most outwardly obvious, over time, being hair. The dosage levels Wendy is receiving make it as close as you may get to very probable that she will lose, on a permanent basis, all her hair. We still have a wig from last year, and Wendy has advised she will be able to change her hair colour like her clothes. I will not encourage this greatly, as wigs cost a mint- but I guess she is worth it!
An immediate negative impact of the radiation treatment is that Wendy's throat has become sore and her voice is becoming just a little husky. When she received radiation treatment to the upper spinal/ neck area some 14 months ago, she had tremendous problems with swallowing due to damage to her throat. It may be that this area, once burned, is more susceptible to radiation treatment and the quickest to adversely respond.
Wendy has had some issues with depression. In this regard, we are in a quandary. The problem with depression is cause. Wendy was climbing out of the ravine, and has been thrown back in. Likely and permanent hair loss; sore throat; the fact the cancer is in her brain; all have the ability to cause a "down". Who could blame her? Fear of coping; of doing it all again; of the side effects. All are daunting, especially if you are tired, which she is. The treatment would be to get out, do some physical activities, and simply refocus. Alternatively, the depression may be linked to the radiation treatment. The treatment is physically tiring. In Wendy's case she has always been active, and the physical act of being tired and unable to venture far from bed may also cause depression. However, if this is the major cause, then the way forward is not to increase exercise and the like as you would for the first cause of depression. The treatment would be different- and indeed in a 180-degree manner to the first set of options, as physical exercise and getting out would simply add to the tiredness and indeed cause exhaustion, and further depression. Added to this is the dexamethasone.
The dexamethasone is a steroid. It is important to reduce the swelling around the brain lesions in the first instance and important to prevent swelling induced by the radiotherapy. Commonly dexamethasone produces insomnia and agitation and increased appetite with cravings. One of our doctor friends advised that in this scenario the usual adult dose his hospital uses is 16mg a day in 4 divided doses. Wendy was on 12 mg a day in 3 divided doses, and in the last day or so reduced to 8 mg per day. While certainly not on the higher range of acute dosage she has been definitely prone to all the problems. The dexamethasone is central to her care and no real alternative exists. The opportunity to reduce the dexamethasone will come when radiotherapy is finished and the swelling (oedema) is subsiding. In the interim, we are trying to address the specific symptoms. In the case of insomnia, Wendy was able to sleep well last night thanks to sleeping tablets. However, it may be the dexamethasone is adding to the severity of depression, either through further tiredness due to insomnia or simply through an amplification of greater mood swings. Significant mood swings are also linked to higher dexamethasone use, although it is also supposed to make you feel good!
This is all very complex- and no easy solutions exist.
Despite this, we have a lot to be thankful about. We are almost in June- and hence almost 12 months from the terminal diagnosis date. The support of the community and the friends who have given us a platform on which to survive continues to carry us.
There is some powerful imagery in one of the shortest books in the Old Testament- Jonah. As the "Wiggles" would say (and the fact I know this reflects the numerous times Daddy has had to sit through the "Wiggles" videos) it is a "Whale of a Tail". In chapter 2, verse 2 to 7. "In my distress I called to the Lord, and he answered me. From the depths of the grave I called for help, and you listened to my cry. You hurled me into the deep, into the very heart of the seas, and the currents swirled around me; all your waves and breakers swept over me. I said, 'I have been banished from your sight; yet I will look again toward your holy temple'. The engulfing waters threatened me, the deep surrounded me; seaweed was wrapped around my head. To the roots of the mountains I sank down; the earth beneath barred me in forever. But you brought my life up from the pit, O Lord my God. When my life was ebbing away, I remembered you, Lord, and my prayer rose to you, to your holy temple."
Like the seaweed for Jonah, we have been entangled with cancer. We are in deep waters, way over our heads. Like Jonah, I hope that one day I may be able to write about our rescue- just like he wrote about his rescue.
As for prayer, it is the wings of an eagle on which we continue to be lifted up, in spite of our adverse circumstances. A recent e-mail concludes with: "Our thoughts and prayers are with you through this new hurdle". A volunteer at work told me today that Wendy is one of five names he prayers for as he walks to the shops every morning- and he expects a good response to his prayers. The local church bulletin asks the church to prayer at 7 am and 7 pm for Wendy Boyd; we received an encouraging telephone call from South Africa a few nights ago letting us know that much prayer is being said over there; another Graeme (shame about the spelling!) told me his dad attends a church in Port Stephens and was praying for a Wendy Boyd- Graeme then told his dad that he could give him a lot of background. All this is but a sliver of the many e-mails, cards and calls of support all saying that many are in prayer.
We appreciate those thoughts and prayers.
Thanks again,
Graham for Wendy, Emma, Joshua and Samuel
Update - 23 May 2003
Dear All,
Sometimes we have to do what we have to do, although we are in anguish. Sometimes we want to simply wake up and find out it was all a bad dream. The morning of Thursday the 22nd of May was an intense time for us. Anticipation builds and becomes distorted with our fears and negative experiences, despite the assistance and beaut support we have around us. As such, Wendy was upset before the radiation treatment, yet found the experience less painful in the doing than the expectation. We have and continue to travel through some shadowy valleys- and it is hard to see bright spots from gloomy places- yet hope remains.
Wendy's favourite Psalm is number 23. One part spoke to her last year- verse 4- "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me." About this time last year it spoke to us, now it speaks to us, and in the future it will continue to speak to us and indeed, others.
As for our first treatment yesterday? Unfortunately, one of the two machines broke down resulting in a queue of people waiting for treatment. We have a "blue" booking card (versus the pink appointment card) and despite the queue found we were able to get into "LINAC ONE" within 15 minutes of our appointment time. I assume LINAC stands for Linear Accelerator. The irony is that both machines were working today, with no queue, and yet waited almost an hour to get Wendy in.
After the 15 or so minutes to set her up, and two 40 second bursts of X rays, one for each of the tumours, I could tell Wendy was getting back some of her reserves. How? She saw three separate people to change the appointment time for the 26th of May from morning to afternoon- why- so she could attend a coat hanger course. I thought I did not hear the course name correctly- but yes, coat hanger course.
Christine, a longstanding nursing friend of Wendy, sat with us for the first treatment and worked on her cross-stitch entitled "Angels Dwell Here". As we waited for the first treatment we reflected on how it had been just a short seven days from the CT scans in Emergency that showed the 2 lesions in the brain to treatment. Like the cross-stitch name, I hoped that angels had been despatched to "dwell with us" during these tough times.
And people continue to prove marvellous. The mothers in Emma's kindergarten class have organised a meal roster; the Principal of Joshua's Montessori school advised that they would take Joshua whenever he needed 'extended day', and we received a lovely e mail of support from Turra-tots, a child day care centre next to the Turramurra Uniting Church- Samuel will be using that in the near future. Like last year, the support from so many reaffirmed that everything, in spite of adverse circumstances, does work for good.
Thanks again for supporting the central theme of the www.wendyboyd.info website- the call for prayer to move God to fight against this incurable disease. I also appreciate an e-mail where a "lapsed Catholic" couple advised that they would be attending mass after several years of absence; to pray for Wendy and our needs! They hoped the roof would not cave in on them after such a drought of attendance. Of interest, the call and response for prayer has maintained its true ecumenical flavour.
Towards the end of James (Chapter 5 verse 11), the only New Testament reference is made to Job. The reference indicates that Job did not necessarily have patience, but he did have perseverance. We need to persevere- but at times, when Wendy is tired, cold and in discomfort, she has "nothing left" and it is difficult.
We ask that people persevere with prayer. Someone has quoted an apt stanza to me:
"The prison where thou art
Thy God will break it soon,
And flood with light thy heart
In his own blessed noon."
Cheers,
Graham for Wendy, Emma, Joshua and Samuel
Update - 20 May 2003
Dear All,
Sometimes words cannot say enough or are inappropriate. I am reminded of Job, with the most effective part of the friends ministry being one of just being there, sitting next to the suffering man for a week without saying anything. I am at that point where words are simply inadequate. The act of being with someone is of greater importance than anything one could write or say. Wendy is fully aware of what is coming- she was there a little over a year ago, and the need to built new reserves of determination is slow in coming as the knowledge and bitter experience had given way to hope and now frustration.
Wendy came off the drip Monday 19 May and discharged today. She had a face mask made yesterday, and CT mapping completed for the radiation treatment. The facemask is to lock her head into position so that she does not move while treatment occurs. For some reason, San radiology wants more CT scans Wednesday 21 May 2003. Further, they have deferred the initial blasting by one day now to commence Thursday 22 May. Her level of daily dexamethasone is 12 mg, up 1200% on what she had prior to admission. The higher levels have assisted in a reduction of swelling around the tumours, and caused much welcome respite from significant pain levels.
The radiation treatment is daily for 2.5 weeks. The CT mapping is to ensure that the beams are targeted in such a way as to minimise passage put through the good brain cells. The individual beams are set at a level below destruction, but when the three beams cross the combined levels are such that the cells are heated to very high temperature and destroyed. The beams are not that wide, and hence computer controlled three beam co-ordinated destruction takes place over the two tumours for many days- i.e. it is not as simple as hitting the centre of the tumours. An additional radius of destruction of good cells will also be completed. The unfortunate part is that we are talking cubic measure, and the additional radius on top of the tumours becomes more significant the further from the centre and hence a number of good guys will be destroyed in the process.
Best guess is that the tumours have been growing for 6 or 7 months. While radiation treatment is being completed, chemo treatment is being stopped. This is unfortunate, as the Herceptin was last delivered a week ago, and we missed the week before due to ill health (being caused by the then undiagnosed brain lesions) and likely now to miss a further 2 to 3 weeks of infusions. This will give the cancer in the other parts of the body some opportunity that I would rather was denied to it!
Ev and Bev have arrived safely today- and Wendy has been joined by a friend from Saudi Arabia nursing days to assist with cross stitching- which is very slow going given the circumstances. Joshua noticed some sunshine this morning after over a week of incredible wet weather (last deluge of this magnitude, according to one news report, was in the 1960's), and demanded to know when his birthday party will take place. We have put him on hold for just a while- but I think he will remember come tomorrow morning!
A simple question. How many sermons do you remember from last year? From 2 years ago? Not many I would suspect. Rather, the various sermons are like meals- we rarely remember them after a long time- but they have made us what we are today. Yet I remember one sermon from my Naval College days. The Minister was the Rev. Bill Rosier- someone who now is involved with the Order of St Luke healing ministry and who receives these e-mails. Bill related how the great battle between Napoleon and Wellington was about to begin. In London, the outcome would be related through a series of semaphore signals. London is prone to fog, and the initial message received was "Wellington defeated". Gloom and despondency overran the English capital. And then the fog lifted, and the full message was received- "Wellington defeated Napoleon". The victory was all the more special as it was snatched from "defeat". Bill related this to the Cross-, and how victory was snatched from defeat. My prayer? That victory, in spite of the circumstances and constant set backs, against the backdrop of incurable cancer, is snatched from the seeming impossible.
Thanks for the prayers,
Graham for Wendy, Emma, Joshua and Samuel
Update - 17 May 2003
Dear All,
Well, after getting over the shock of the recent bad news we are again grateful for the significant levels of support being offered to our family. Wendy's parents, Ev and Bev, will be travelling the thousands of kilometres to Sydney from Townsville on Tuesday. They will find considerable support not only from Alison J. (our main support carer for the children) but also from many who have pledged meals, prayer, children assistance, prayer, and many forms of practical help as well as you guessed it, prayer.
Wendy is doing well today. She was admitted to a private room (607) at the San yesterday afternoon, and has received a number of short visits from friends. I think Emergency had to get us out as we started to get a few visitors offering beside prayer! (Of interest, the beds in Emergency are not the most pleasant, and one of the nurses in Emergency managed to hijack a decent bed from somewhere else in the hospital to make life just that little more easy).
The higher dosages of dexamethasone appear to have eased the swelling in the brain, and she is very comfortable relative to 2 days ago. She will complete a very detailed set of CT scans on Monday, which will form the basis of the radiation treatment that will commence on Wednesday. She is on the drip, and until she is able to eat and keep fluids down it is unlikely she will be discharged.
Given the success of radiation treatment for cancer near her upper spinal area now one year ago, it appears the radiation treatment has a reasonable level of expected success. The reason the Herceptin did not keep the brain tumours from growing relates to something of a blood/ brain membrane. This membrane does not allow certain compounds into the brain area and is a natural defence mechanism. My layman's understanding is that, unfortunately, the inability of the Herceptin to go into the brain area has allowed the HER-2 protein to fuel the cancer growth in that one area of the body- whereas everywhere else the cancer is in remission. I do not know why previous scans have not picked up the growths. It may be that while full bone scans cover everything, the CT scans after a number of them did not check the brain area, and had progressed to simply starting at the neck down.
Wendy will once again lose her lovely hair- and it was looking so good. There is a high chance that the hair loss, given the treatment, will be permanent. I think Wendy may worry about that more than the treatment!
Thanks for the many e-mails and telephone calls of support, and the messages from many groups of people, both in Australia and internationally, indicating significant prayers of intercession.
Thanks all,
Cheers,
Graham for Wendy, Emma, Joshua and Samuel
Update - 15 May 2003
Dear All,
The e-mail updates have become irregular as I do not wish to send material out unless I have something of substance. Indeed, everything appeared to be going well. The bone hardener was taking effect- earlier than anticipated, and the cancer seemed to be in check.
Unfortunately, Wendy has been vomiting, unable to eat or drink, and has experienced significant pain around the back of her neck, as well as bad and constant headaches moving from rear to front. After considering the issues of dehydration, our GP considered hospitalisation the best way to go. I took Wendy down to Emergency at the San Hospital at Wahroonga this afternoon, and as a prudent check they managed CT scans of the brain. The results have knocked us for six, as they showed problems we did not anticipate.
Quoting from the report, "There are at least two solid intracranial lesions present. There is a 2.3 cm times 1.8 cm nodule in the left frontal lobe. This is surrounded by a large amount of edema which causes mass effect. There is also extensive edema within the left cerebellar hemisphere, with a central 1 cm nodule. Given the history, the lesions should be regarded as metastatic, unless proven otherwise. There is mild pressure on the left perimesencephalic cistern".
While the San Radiology Report does not give any joy, it shows something we were not aware of that is real. Specific prayer against these cancerous growths would be appreciated.
The Oncologist is visiting Wendy early in the morning (Friday), and will outline strategies. I imagine that radiation treatment against the tumours may be one option, as well as a ramping up of the existing chemo to make it more aggressive. Tomorrow will highlight the way forward.
The staff at the hospital continues to be wonderful. Unfortunately, Wendy is one of 10 patients in Emergency waiting to be admitted (among 23 patients in Emergency), and patients are in the corridors.
We have cancelled Joshua's 4th birthday party this Saturday- and have put the guest appearance of "Batman" (Joshua's latest craze) off to another time. Ev and Bev, after a successful reunion with their house in Townsville have offered to return depending on what the Oncologist says tomorrow, and my Mum has managed to look after the children tonight with a great deal of success. Emma has drawn a lovely get well card with lots of hearts and flowers- I will present it to Wendy tomorrow.
Wendy is on pethidine for the pain, particularly in the neck. She is on high dosage of dexamethasone to try and relieve the swelling in the brain, and is on a drip to stop dehydration.
Prayer as people are lead would be appreciated.
Thanks all,
Graham for Wendy, Emma, Joshua and Samuel
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