Monthly Archives: June 2009

Uncharted Waters

chartsPsalm 107:23 – 30

‘Some go down to the sea and travel over it in ships to do business in great waters; these see the works of the Lord and His wonders in the deep. For He commands and raises up the stormy wind, which lifts up the waves of the sea. [Those aboard] mount up to the heavens, they go down again to the deeps; there courage melts away because of their plight.’

This is exactly how I felt as I left the hospital on Thursday night, only hours after Sam had been hooked up again to the drip for her second round of High Risk chemotherapy on BFM 95. I felt like I was in uncharted waters. I asked ‘evil nurse’ if I could study the charts to get my head around the new chemotherapy drugs that were being introduced on this round. In this way I hoped to prepare myself for a new list of potential side effects, have new points to pray through, and hopefully shed some light on this dark path.

“Evil nurse’ had softened towards me and this was the first of many miracles to come. ‘I am sorry,’ she said. ‘I am unfamiliar with your daughters protocol. I don’t feel I have seen this one before. ‘ So I explained the journey of the last 5 months and told her it wasn’t her fault that she unfamiliar. I told her about the MRD and our specialist’s trip to Italy and that we are trialing this paediatric protocol for the first time ever at RNSH. Then together we examined the charts and compared them with the notes I have been given. She was kind towards me, apologising profusely when she forgot to get me the things I asked for. Things like a new dressing pack, a power board and more gauze. I know where all these things are but waited and asked again since I am not supposed to go into the treatment room.

When I said that I am learning how to be a ‘good nurse’ myself she commended me on my remarkable nursing skills. She went the extra mile to be my friend and it made it easier for me to leave knowing she would be kind to Sam for the rest of her shift as well.

Evil Nurse is the one who refused to check our blood results on Mothers’ day so we could go home for lunch. Evil nurse is the one who told us not to bring so many things to hospital. Evil nurse ignored me completely the last time we were here insisting on only conversing with Sam as she familiarized herself with Sam’s multiple drip stand. Evil nurse is the one who commented in shock how different Sam looked in the middle of the night without her wig or her makeup and how tremendously pale she was, scarring Sam’s self esteem. Evil Nurse has turned around and now treats us with grace and kindness. I am so relieved.

Driving home with heavy eyelids I pondered the extreme emotions of this journey. Only a day ago we had been laughing together, Sam and I, about how clever we were at escaping hospital for quick trips to Chatswood for $8 steaks at the Chelsea Bar and a spot of shopping at Westfield. We congratulated ourselves for all the short cuts we now know, things we’ve spent all this time to discover. We agreed that we could write a book or at least a very long list about making trips to hospital bearable and exchanged our ideas with other patients whiling the hours away in the waiting room hoping for a bed.

The joy of spending this concentrated time with my 21year old daughter is overwhelming. We’ve made soft toys, started to knit, indulged our passion for brushetta and coffee on a regular basis. We’ve enjoyed surprise visits from my mum, who popped her head around the curtain today after having made the trip by train from Gosford just to pass the hours with us. We’ve lived life fully, making the most of our days. Sometimes I completely forget about the prognosis. ‘I mount up to the heavens.’

Returning to radiology my heart grows weak. ‘I go down again to the depths, my courage melts away because of my plight.’ I waited for her to be wheeled back to me. I stood by her bed, I held her hand, I admired the perfection of her face and the length of her lashes closed soft upon her cheeks. I love her completely. I want to take this from her. To see her slamming the front door again, wearing skirts and heels – going out on a date, dangling the car keys in her hand, saying ‘don’t wait up.’

eyelashes

The sedation made her groggy and her words don’t make sense. “ I don’t know mum, I don’t know!” she says in response to my silence turning again to a drug induced sleep. The events of the evening had been impossible. Sadness hovered over her like a heavy cloak. It weighed her down, as did the nurses constant reminders to not lift her head. In spite of their warnings they pumped lasex into her drip telling me it was necessary so that she would urinate out the chemotherapy as soon as it passed through her system. The urge to go made it almost impossible to lie still for four hours. It was like torture combined with the humiliation of bed pans and plastic drapes and nurses coming and going. They prodded her, they rolled her, they checked her wound. They inflated the cuff on her arm to check blood pressure regularly. They stabbed her finger to check blood sugar levels, they took her temperature and when the four hours of ‘stillness’ passed they weighed her to make sure the chemo is passing through her at the desired rate. In the night they came  to inject her with insulation. Her blood sugars had gone up and they exchange the IV bags of glucose for bags of saline instead. ‘This might help it go down,’ they told me and I wondered why the glucose bags were hung originally.

These procedures will be repeated 24 hours a day for 6 days.

They reel to and fro and stagger like drunken men and are at their wits end [all their wisdom has come to nothing]. At least that is how it seems. I pondered the many times I’ve circled the car park dragging my bags behind me, forgetting what day it is and where I parked the car. The times I have cried in sheer exhaustion as I’ve wandered the six floors feeling sorry for myself. I arrived at my car and set the Ipod on my phone to my drive home selection. Jack’s gift to me was to load up my song list and applications before I left in the morning. I scrolled down and find Tauese Tofa, I pressed play “You move the mountains that stood in my way, you calm the raging seas…”

I ‘cry out to the Lord in my trouble, and He brings me out of my distresses. He hushes the storm to a calm and gentle whisper, so that the seas are still. Then the men are glad because of the calm, and He brings me to my desired haven.”

The presence of the Lord filled my car; the oil of His spirit anointed my head. His peace returned as I worshiped Him on my journey home. I heard the gentle whisper of His voice, reassuring me that He gives me strength for the journey. His love never fails.

“Blessed are those who dwell in His house. They are ever praising You, blessed are those whose strength is in You. Whose heart is set on pilgrimage. As they pass through the valley of Baca, they make it a place of springs; the autumn rain covers it with pools, They go from strength to strength til each appears before God in Zion.” Psalm 84

This season will pass. Though it is full of tears, He will make them a spring.  Rivers of refreshing will flow. He will renew our strength.

I am in uncharted waters. I do not understand the path I am on but this I do know.  My God “has beset me and shut me in – before and behind, He has laid His hand upon me. His infinite knowledge is too wonderful for me; it is high above me, I cannot reach it. Where could I go from His Spirit? Or where could I flee from His presence? If I ascend into heaven, He is there; if I make my bed in Sheol, behold He is there. If I take the wings of the morning or dwell in the uttermost parts of the sea, even there His hand shall lead me, and His right hand will hold me. If I say, Surely the darkness shall cover me and the night shall be the only light about me, even the darkness hides nothing from Him but the night shines as the day; the darkness and the light are both alike to Him.” Psalm 139:5 – 12

“When we pass through the waters, He will be with us and through the rivers, they will not overflow us.” Isaiah 43:2 (Thanks Judy who messaged me this as I was typing. She didn’t even know I was ‘all at sea.’ But God knew and put me on her heart to encourage me. Strength from the shores from those already returned from the deep!)

In the midst of this tempestuous sea my God is still my refuge. “For when God made (His) promise to Abraham, He swore by Himself, since He had no one greater by whom to swear, saying “Blessing I certainly will bless you and multiplying I will multiply you …We have this hope as a sure and steadfast anchor of the soul, (it cannot slip and it cannot break down).

Footnote: Judy is the mother of Sam Chapman (aged 19) who was diagnosed with AML last August and needed a transplant. Thankfully his precious sister was a match and though the journey for them was filled with difficulty, Sam is doing well. Judy is a constant encouragement to me, reminding me continually “His ways are perfect and He is faithful.” Thankyou Judy. One day we will stand together with our Sam’s and speak of the business we did in the great waters, say how we saw the works of the Lord and tell of His wonders in the deep.

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Hopscotch

iStock_000000496131XSmallMy life feels like a game of hopscotch. We’ve marked out the squares; we’ve selected our stones, we have each other and we’re ready to go. We stand on the semi-circle labeled ‘START’ and position ourselves for the throw. Beyond the numbers 7 and 8, we can see the goal. The goal is ‘HOME’ but the game doesn’t really finish there. We know the rules. First we must get the stone to land firmly in the first square and to finish the round we must balance, jump and hop our way back to the start. If we succeed in doing so (without touching the line when we pick up our stone) we will be privileged to move to the second square.

So far over the last two months we have only completed one round of this awful protocol of High Risk chemotherapy. We have been to the START point a few times. We have waited our turn. But this week, like last week, we’ve had to go back to the START to try again. When the counts are too low it means that Sam’s body has not become strong enough for another round of chemotherapy. There are certain levels that they need to check and without those levels being high enough we have to go home and return to try again. Trying again will mean blood tests every second day and maybe transfusions or maybe a drug known as GCSF will be injected into her tummy.

Trying again has its advantages. We take delight in going home. We enjoy the warmth of the heater, the luxury of home cooked meals; we are satiated with the fine brew of the local barista. We prefer days of blood tests and transfusions to days of chemotherapy and its side effects. We prefer days of chemotherapy to days of lumbar punctures, bone marrow biopsy’s and the claustrophobic machines of nuclear medicine. It is all relative I suppose and there are days when I wonder if I will ever complain about simple things again.

Tomorrow is our third attempt to get our stone to land on square 2 and after that square we will have 4 more squares to successfully land on. It is still a long journey in front of us and everyday is unpredictable. Sometimes Sam needs a platelets transfusion, or haemoglobin, or fresh frozen plasma. Every time Sam receives a transfusion we are grateful for the work of the Red Cross. Blood transfusions are keeping my daughter alive. My thoughts are unable to fully digest that fact.

Every now and then I find a hole in my belly where my courage used to be. On nights like these, on the eve of that potential ‘re-entry’ day, it hollows out. It takes such an effort to pack, to load up the car, to take the journey, to keep on smiling. I feel like the busy little toddler in A.A. Milne’s poem Busy.

It goes like this:

Busy

Round about
And
round about
And round about I go—
All round the table,
The table in the nursery—
Round about
And round about
And round about I go;

I think I am a Traveller escaping from a Bear;
I think I am an Elephant,
Behind another Elephant
Behind
another Elephant who isn’t really there …

SO

Round about
And
round about and round about
And round about
And round about
I go.

I think I am a Ticket Man who’s selling tickets-please,
I think I am a Doctor who is visiting a Sneeze;

Perhaps I’m just a Nanny who is walking with a pram
I’m feeling rather funny and I don’t know
what I am

The poems and games of my childhood provide light relief to this otherwise impossible path. I feel foolish sometimes as I enter the world of my childlike faith but my Father in Heaven reminds me of the story in  Mark 10:13-15 (Amplified Bible)And they kept bringing young children to Him that He might touch them, and the disciples were reproving them [for it].But when Jesus saw [it], He was indignant and pained and said to them, Allow the children to come to Me, do not forbid or prevent or hinder them, for to such belongs the kingdom of God. Truly I tell you, whoever does not receive and accept and welcome the kingdom of God like a little child [does] positively shall not enter it at all

And so I come as a child and I lay my life again at His feet. I do not know what tomorrow will bring.

At times I don’t even know anymore who I am. I have lost my identity. I no longer pastor a church. I no longer teach Kindergarten. So my identity is not in my career.

I am rarely home to cook, or to clean, or supervise homework so I hardly can rate myself as a homemaker.

Even in hospital I feel at the mercy of the nurses and doctors who know better than me about my daughter’s condition.

Date nights with Reid are almost a thing of the past, or at least a chapter of another season.

I like what Rick Warren (author of The Purpose Driven Life) says “God is more interested in your character than your comfort. God is more interested in making your life holy than He is making your life happy. God didn’t put me on the earth just to fulfil a to-do list. He is more interested in what I am than what I do.” Therefore, through all of this I seek to find my identity in Him.

Galatians 2:20
“I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me”.

Some days I die a better death than others.

Today I nearly went insane. The list of things to do before our return overwhelmed me. I lost my patience.

My Sam looks so incredibly beautiful that I forget she can hardly keep up with me. I am used to her being independent. I am not used to being needed like this. I graduated from the baby stage, the toddler stage, the primary school stage and almost (Jack is in Year 9) the high school stage of parenting. Just like it was in the beginning, just like the game of hopscotch, I am at the START plate throwing my stone.

I kiss her precious balding head when I turn out the lights and give her the last sip of water for the day, from her cup. I sit beside her praying the prayers of her childhood. I rehearse the prayer I taught her when she was two adapted from Proverbs 3. “When I lie down my dreams will be sweet, when I lie down, I will not be afraid. And the Lord will be my confidence.” As I pray it I can hear her voice from years ago reciting it back to me line by line.

This is the way we taught our children to know that their strength was in Him. Eventually they discovered Jesus for themselves. For this I am grateful. When I read Sam and Emma’s blogs, when we talk together, when I see Jack worship God I am so grateful that there lives are in His hands. That He knows them and that they know Him. I know I am only responsible for them for a borrowed season. I pray that I do it well and make God proud.sg youth

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Faith or Fear

Hands

Sometimes the butterflies in my stomach feel more like an ache in my soul. I look and I see it all. I see the notes stamped ‘High Risk’; I hear the concern in their voices. I know the tender touch of the nurse isn’t because she likes me but rather because they have all been told.

Is faith really faith before it is tested? Or does the certainty of fire cause it to rise? Is faith foolish? Do miracles really happen?

I’ve had my hand squeezed enough times now through the bone marrow biopsies to know that this is not a game we are playing. But still Hope holds me. I am warm in His embrace. Each day I discover more about God’s character. Hope, Faith and Love are not just words, they are who He is. And everyday, He is who I need Him to be.

I consider Paul’s writing in 1 Corinthians 13:12-13, “Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. And now these three remain: faith, hope and love. But the greatest of these is love.”

Surely the poor reflection is caused by our inability to grasp His capacity. He is not distant, He is not far off. No, the God I serve is there to ‘help in good time for every need [appropriate help and well-timed help, coming just when we need it].’ Hebrews 4:16

I am not walking in Fear. When I go there it paralyses the very breath in my lungs. Where else did the saying, “Remember to breathe” come from? Yet it is Him who gives us that breath and without Him we would surely not breathe at all.

In the unconsciousness of night, it is Fear that wakes me. Sneaking in with uninvited thoughts. He is not welcome and commanded to leave. Fear is not just a word but rather the character of the enemy. He doesn’t leave without a fight. He tries another angle. Uses Mother Guilt to convince me that Fear would be more responsible than Faith. Sometimes we converse together, Fear and I. I see he has built his argument and at times I am tempted to agree. He lays out ‘facts’ before me to prove his point. Yes, he has his examples. But like I did on the school debating team many years ago, I reach for my own evidence (my beloved Amplified Bible) and I scrawl ‘Phil Pringle’  style on its pages. (See Pastor Phil’s amazing Blog in my Blog Roll)

I am on the affirmative team for Faith. I’ve made my stand and I will not back down. I pass my pages to all who will read them, just so long as they agree, just so long as they, like me, are on the team for Faith. It isn’t just adrenaline that runs through my veins. No, it’s a lifelong conviction. I will not be moved.

It’s too late for me now to back down. I am a bond servant. I have given up my right to walk away. I know the price of my freedom has been paid in full. I choose to lay down my life and live the one He has called me to. Right now that calling is full of challenge. Yet to Him who called me I am “fully known”. That is enough.

“Yes, though I walk through the [deep, sunless] valley of the shadow of death, I will fear or dread no evil, for You are with me; Your rod [to protect] and Your staff [to guide], they comfort me.” Psalm 23:4 And in the shadow He is there. Though it is dark, He is there. Though I can not see His glory, I know He passes over me. He protects, He holds, He comforts. He makes me laugh. “My cup runneth over.”

He sends me friends, new and old. I find them on FACEBOOK and Twitter. I spend my days ‘listening, observing, storing things away, making my isolation pay off.’ Anne Lamott (author of Bird by Bird) says this is the way of a writer. I record these things in my blog. Every now and then a comment comes back. Like the bird sent out from the Ark returning with a leaf, reminding me there is dry land. Life continues to exist the way I once knew it. I will return from these forty days and forty nights.

I admire the tremendous focus of my daughter. She is like her dad. She chooses her thoughts. She doesn’t let them wander to trivial or useless things. She is calm, using the silence to her advantage. I am learning to be still and talk less. I pray gentle prayers, asking her first if its okay. Yesterday I read to her from John 14:1 & 27,“Do not let your hearts be troubled. Trust in God; trust also in Me. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” These were the words that hovered over my sleep protecting me when Fear came to visit. These were the words that returned to me as I held her hand waiting for the doctor and the nurse to prep her for the bone marrow biopsy.

The room wasn’t really silent but somehow Sam made it so. Three other patients have been admitted. Two of them talk loudly in thick Aussie accents. One is from the country, “lived on the land, sheep mainly.” The other is 65 and tells her new room mates she’s had “breast cancer three times, a nervous breakdown and now this!” I watch Sam’s tiny face, her soft lashes on her checks. “Are you okay?” “A huh, just thinking about other things,” she responds. Where does she go I wonder?

By the time the first 2mls of sedation had entered the drip she looked like she was fast asleep. The doctor proceeds with the biopsy, commenting on the beautiful ‘Dimples of Venus’ on her back. She marks the spot where the needle will enter her bone. The nurse is ready to pass the tools. I make a mental note not to look. I can’t watch this like I did previously. I know I will regret it.

The pain of the procedure is too much to bear and the beautiful doctor is so compassionate. She increases the dose of madazalan and waits. With each dose she tries again but the pain is excruciating and I am so thankful Sam has her voice back to cry out. My eyes well up with tears as she squeezes my hand and I wish more than anything that I could put a stop to it all. Instead I whisper prayers of peace over her and the doctor and the nurse show their respect by waiting. I am so grateful for this doctor who waits. She is in no hurry to complete the procedure. I feel like a person for once, that my daughter’s pain matters. Even through the afternoon she returns as Sam sleeps off the sedation, to check on her. To tell me she thinks it’s barbaric that this procedure is done without a general anesthetic because the theatres are too full at RNSH. She is horrified that the first few biopsies were done with only gas and no sedation at all. Her care for us is overwhelming. I soak it in.

I am so grateful for the little kindnesses of people.

The plan had been to: Arrive at 8.30am. Have blood tests. Go to admissions Unpack bags Do the bone marrow biopsy. Go to radiology have a lumber puncture. Go to Nuclear medicine for gated heart pool scan Start fluids via drip Then start 6 days of chemotherapy I am wiser now and know things don’t run to plan.

Yvonne insisted, “I’ll look after Sam, you get the bags from the car and go to admissions.” I was doubtful, wanting to check the bloods and to check again with Dr Greenwood. So Yvonne checked the bloods and the high risk protocol and assured me it would go ahead. Vicki at the desk called for Raj to lend me his trolley to help with the bags. “It’s like five star treatment.” I joked with all the friendly staff at the desk. Evil nurse wondered what all the fuss was about looking at me under her glasses and down her nose. I caught her staring and greeted her by name. “Oh, hello,” she said (busted)!

Before the biopsy I had unpacked her bags, Sam had chosen her bed (first in best dressed) and I’d labeled her food for the fridge. We were ready for the massive week to begin. Sometime in the afternoon a registrar came to tell me she had spoken to Dr Greenwood and he was sending us home. The counts were too low. I tried to wake Sam but she was groggy all day. “What’s wrong?” “Why?” “Didn’t the bone marrow work?” Eventually she understood and by 5pm the bags were packed again, the bed deserted, the fridge emptied. We made our way to the car, Sam leaning on me, drunk with sedation. She almost slept through ‘Master Chef’ when we got home as well.

Now we wait. And pray. The fluid is at the lab. My daughter’s life is under the microscope. On Sunday I had a vision. I saw the women going to the tomb to visit Jesus and heard the voice of an angel. “That which you seek isn’t here.” It isn’t recorded that way in my Bible. But I’m praying it anyway. I am praying it over the fluid they’ve extracted from the bone marrow. I am praying that which they seek isn’t there. No blast cells. The chemotherapy has done its work. There is no need for a transplant.

That is my prayer. That is my prayer.

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Trees

Transparency00611

Last night, Sam announced that she wants to plant a tree. “Can I do that? Plant a tree in a public place?”
Her question did not come as a surprise. In fact, it was so expected, as if I’d been waiting for her to ask.
How does that work when you’re a Mum? How do we know the baby is about to wake up, that your toddler has climbed too high in the tree, that a friend was unkind at school? How do we know before it’s happened, or spoken or seen? This is the miracle or the curse of motherhood. The invisible umbilical connecting our souls.
I’ve always loved trees.
And as I write that statement my mind is flooded with memories. The willow tree in our yard when I was five where Kim and I tied the long strand like branches to make swings. The grand willow, under which my baby brother James would lie in his pram wearing my mums cat eyed sunnies and a terry toweling hat. The jacaranda tree in the Strathfield house, that I would sit and  write in for hours overlooking the Greek family behind us with their massive family gatherings and their pet ferret that ran along their fence. I think of the pink oleanders in the first house Reid and I bought that we cut down in case Sam put the seeds in her mouth. Then all the fruit trees we had in Wimbledon Ave. We even had a mango tree. Angus Stone would be jealous!
This year I’ve been watching the trees that I drive past on the way to  RNSH. I’ve watched the maples trees turn from luscious green to Autumn shades. I’ve watched them drop their leaves and now they are almost bare. The last remnants of Autumn. The stubborn leaves that hold on to the branches, willing winter not to come.
The trees have been to me like a visual calendar, marking the days, marking the seasons! Breaking the monotony of this tedious, repetitive, difficult journey. So often I find myself caught up in dreamlike thoughts about the seasons; the seasons of life, the passing of time, the purpose of it all. I recall the scriptures, the many references that are made to the seasons.
I recite Psalm 1, time and again, is if on autopilot. It is rich in revelation. This is the psalm I memorized as a young bride living in San Diego when Reid went to Asia for a month of crusades and left me behind to work at ‘Honey Country Hams’ in Rancho Bernado. I was 19! I  thought we could change the world. Now I am 43 and I secretly think I still can. Well, maybe it’s not a secret now.

And I am not exactly sure how I would change it. Or maybe on the other hand I already am.

Judy Chapman popped into 12A with her Sam after their appointment with Dr Matthew Greenwood. Yvonne saw us chatting and came to join the party. Yvonne was sharing her ideas that she had put forward for the new hospital and Judy and I chorused that we could petition together for a ward for young adults. Maybe I will become an advocate for better conditions for cancer patients or campaign for stem cell or blood donors. Who knows what the future holds? I barely make plans for tomorrow right now. My focus, like always, is to hear the voice of God, to love my family and to impact the lives around me.  To celebrate life completely despite the season I am in. To be a tree that bears fruit.

Psalm One.

“Blessed (Happy, fortunate, prosperous and enviable) is the man who walks and lives not in the counsel of the ungodly [following their advice, plans and purposes], nor stands [submissive and inactive] in the path where sinners walk, nor sits down [to rest or relax] where the scornful [and the mockers] gather.

But his delight is in the law of the Lord, and in His law (the precepts, the instructions, the teachings of God) he habitually meditates by day and night.

And he shall be like a tree firmly planted [and tended] by the streams of water, ready to bring forth its fruit in its season; its leaf also shall not fade or wither; and everything he does shall prosper [and come to maturity]

For the Lord knows and is fully acquainted with the way of the righteous.”

I want to be bearing fruit every season, whatever the season. In season and out of season! I am grateful for the years I spent tilling the soil, so to speak, making it ready for the season I now find myself in. My life has not been a bed of roses, (ha ha, so many metaphors) but the roots of God’s word has been hidden in my life and now it does bring forth, even if it is just enough for each day. Like manna in the wilderness, it seems I cannot collect extra or foresee what tomorrow will bring. This I know however, I have enough for every day and that is sufficient. If I look to the future or try to make plans for Spring, my soul is anxious within me. No wonder God said, “Do not worry about tomorrow, consider the lilies” (Luke 12) And yet are we not more to God than the lilies.

Sam did not want to come to hospital today. Yesterday was such a great day. It wasn’t extraordinary, nothing marvelous happened. Just a stroll through the shops, lunch by the sea and a meal out with friends! Everyday that is not spent in this vile room is a celebration.

Today all the snorers are in 12A. The guy opposite me has nearly choked a hundred times when he snores too deeply, waking himself up and looking around. I laugh out loud with Sam and then we make that ‘whoops’ face at each other like we have been caught passing a note in class.

The difficult nurse is on duty. Difficult because she swears like a trooper and is very awkward socially. If ever another nurse does something differently to she would like it done she questions the patient, “Which nurse did this?” Today she has asked this question to at least four patients and I am wondering why she cares. Poor ‘difficult’ nurse! I find her so difficult to warm to. When Sam first got diagnosed and became an ‘outpatient’ in 12A she knelt at Sam’s chair and cried and rubbed her legs saying it was a crappy, crappy thing. Only she was swearing. Sam and I kept telling her, “No, its fine! We’ll get through this. We will be fine.” But in spite of our insisting she collected pamphlets and contact details for Clinical Psychologists and Counselors. “You will see,” she kept saying “it’s a crappy, crappy thing.”

It is a crappy, crappy thing! We are surrounded by the sick and the dying almost everyday. Old men and women mainly, with blankets on their laps, heads back in their Jason recliners snoring. Tubes of blood or chemotherapy drugs are connected to their bodies, their hands, their ‘pic’ lines, and their canulas. Today a man had a tube coming out of his nose. Every now and then a young person arrives but in the months we have been here, Sam Chapman is the only other young Leukaemia patient we know.  Yet in this season, God calls us to rejoice, to trust in Him.

There is always temptation to go to fear, to agree with ‘difficult nurse,’ to look at the statistics but we chose to take delight in the law of our God and not take the advice of scoffers or mockers.

Mark 11:12-14

The next day they were leaving Bethany, Jesus was hungry. Seeing in the distance a fig tree in leaf, he went to find out if it had any fruit. When he reached it, he found nothing but leaves, because it was not the season for figs. Then he said to the tree, “May no one ever eat from you again.”

Mark 11:20-25

“In the morning, as they went along, they saw the fig tree withered from the roots. Peter remembered and said to Jesus, “Rabbi, look! The fig tree you cursed has withered!”

“Have faith in God,” Jesus answered. “I tell you the truth, if anyone says to this mountain, “Go throw yourself into the sea,” and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask in prayer, believe you have received it, and it will be yours. And when you stand praying, if you hold anything against anyone, forgive him, so that your Father in heaven may forgive you your sins.”

So, just like the fig tree, Jesus requires us to produce fruit when it is not the season for figs; to put our faith in Him for the seemingly impossible, to look at this mountain of cancer and cast it into the sea, to forgive ‘difficult nurse’ for giving advice that we do not wish to receive, to accept that where we are right now is a season that will continue to build us into great trees of righteousness.

Isaiah 61

The Spirit of the Lord God is upon me, because the Lord has anointed and qualified me to preach the Gospel of good tidings to the meek, the poor, and afflicted; He has sent me to bind up and heal the brokenhearted, to proclaim liberty to the [physical and spiritual] captives and the opening of the prison and of the eyes to those who are bound,

To proclaim the acceptable year of the Lord [the year of His favor] and the day of vengeance of our God, to comfort all who mourn,

To grant [consolation and joy] to those who mourn in Zion–to give them an ornament (a garland or diadem) of beauty instead of ashes, the oil of joy instead of mourning, the garment [expressive] of praise instead of a heavy, burdened, and failing spirit–that they may be called oaks of righteousness [lofty, strong, and magnificent, distinguished for uprightness, justice, and right standing with God], the planting of the Lord, that He may be glorified.

And they shall rebuild the ancient ruins; they shall raise up the former desolations and renew the ruined cities, the devastations of many generations.

Willow Tree

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As surely as the sun will rise

Joshua 21: 43 – 45 And the Lord gave to Israel all the land which He had sworn to give to their fathers, and they possessed it and dwelt in it. The Lord gave them rest round about, just as He had sworn to their fathers. Not one of all their enemies withstood them; the Lord delivered all their enemies into their hands. There failed no part of any good thing which the Lord had promised to the house of Israel; all came to pass.

There are days were it seems that we are surrounded by enemies on every side. Some mornings I open my eyes and wonder in trepidation what the day might bring. I choose to throw the doona back and get prepared.

I am learning that a simple, routine trip to the hospital for blood tests can be fraught with unexpected despair. Sam’s own anxiety is expressed in her attention to detail in getting ready. She is meticulous, making sure every strand of hair is perfect, her makeup is applied, and her clothing is accessorized. The last thing she wants is to look like someone who has cancer. She doesn’t want pity, she doesn’t want to be stared at, nor does she want to stand out in anyway. In spite of this desire, her unique beauty has people turning their heads. She is usually the only person in 12A or 12D who doesn’t look sick.

I, however, am aware of how sick she feels. I give her an ‘Ativan’ to dissolve under her tongue as we get in the car. I get ready the special plastic bag (that would double for a fabulous elephant trunk for Kindy dress-ups) in case she throws up. I check we have ‘Zofran’ to stop the vomiting, should we need to. Then I try to discern whether she feels like music, or conversation as we make the trip all the way through traffic to our destination at RNSH. Sometimes we drive in complete silence both wondering what the day will bring.

With each visit her desire not to leave home increases. The slightest change of plans unnerves her. It feels like we are facing the greatest battle.

I phoned Reid to meet us at the hospital on Friday. He had just flown in from Perth and was more than willing to help. He agreed to arrive at the hospital before us and organize a wheel chair to meet us. Sam’s little body has become incredibly weak in the last fortnight. She weighs a mere 44 kilos and can barely walk ten steps without loosing her breathe. So, Reid helped her out of the car to take her to 12A and I made the revolutions around the 6 storey car park locating a spot on the roof.

I tried to locate Sam and Reid in Treatment Room 1 but couldn’t see them anywhere so I asked one of the nurses where she was and discovered that today she had been sent to Treatment Room 2. Half way down the corridor I walked into Yvonne chatting to Dr Torie Pechey (my favourite doctor). They were discussing Sam and brought me into the conversation, expecting that I already knew today’s news. “So Clare, she’s thyroid toxic,” said Yvonne. “Oh heck!” I responded, “What’s that?” So Torie informed me that she didn’t know too much about thyroid conditions either but that she was doing a full investigation along with the other doctors and that Sam would be going down for a scan after her blood tests and seeing an endocrinologist that day.

I found Sam in Treatment Room 2 and discovered that Reid had left to take an important call for work on his mobile phone. Sam was unsettled; upset that she was in this treatment room with nurses she didn’t know. Armed with the information that we now had a long day ahead of us, I personally decided to relocate her to the other treatment room and get her on a bed. I did all this with respect to the staff, explaining to Nurse Meredith who was ‘in charge’ on Friday of my reasons for doing so and she was most empathetic. In fact, she even came and took the bloods herself and made sure that the curtains around Sam’s bed were closed so she could sleep until it was time to go to ‘Nuclear Medicine’ for scans.

Somehow the hours passed as they do at RNSH with nothing much really seeming to happen. My mind had plenty of time to grow anxious and uptight about whatever ‘thyroid toxic’ meant, while exhausted, Sam slept beside me. Then a suddenly a wheelchair and an orderly arrived to take as down for the scan. I didn’t really know what to expect until we were directed to wait in a cubicle for the nurse to come and inject Sam with dye. A doctor passed and introduced himself as the endocrinologist and that Sam’s case had been referred to him. “With all the information I have,” he told Sam, “it seems you have Grave’s Disease and after your scan you can come to my office and we will discuss how to treat this in a way that does not interfere with your chemotherapy treatment.”

Sam looked at me and her little bottom lip began to quiver like it did when she was a baby. “I can’t take it anymore, Mum,” she said. “My body just isn’t working.” The nurse came back to find us both in tears, obviously unaware of all that Sam had already been through, tried to convince Sam that it was all okay, just a tiny needle of dye and a 20 minute wait. The rest would be completely painless. “She’s been through so much,” I told the sweet nurse. “She isn’t crying about the needle. She has Leukemia and let’s just say she’s been through so much.”

After the dye was injected we waited.

Everyday contains small miracles. Friday’s small miracle was that my iphone internet decided to work even in ‘the bowels’ of RNSH and I quickly searched for the story of the widow from Zarepheth in the book of Kings. I had been telling Sam that I felt the way that widow must have felt when Elijah the prophet had come and asked her to make him some bread. I was feeling like God was requiring something so great from me and from Sam. Something I felt incapable of giving. In that moment it felt like I had given everything I had, all my faith, all my prayers, all my courage and now we were required to have more faith. “If God requires it, we must have it in us to get through this,” I told Sam. Then with tears in my eyes I read all of 1 Kings 17 including this part:

So he arose and went to Zarephath. When he came to the gate of the city, behold, a widow was there gathering sticks. He called to her, “Bring me a little water in a vessel that I may drink.As she was going to get it, he called to her and said, “Bring me a morsel of bread in your hand.” And she said, “As the Lord your God lives, I have not a loaf baked but only a handful of meal in the jar and a little oil in the bottle. See, I am gathering two sticks, that I may go in and bake it for me and my son that we may eat it–and die.” Elijah said to her, “Fear not; go and do as you have said. But make me a little cake of [it] first and bring it to me, and afterward prepare some for yourself and your son. For thus says the Lord, the God of Israel: The jar of meal shall not waste away or the bottle of oil fail until the day that the Lord sends rain on the earth.” She did as Elijah said. And she and he and her household ate for many days. The jar of meal was not spent nor did the bottle of oil fail, according to the word which the Lord spoke through Elijah.”

And so I said to Sam how just like the widow woman, God could use the little we have left and all we have left is the oil, which is His Holy Spirit and the flour, which is His word.

Then I read the rest of the passage about how the boy died after God had provided the first miracle:

After these things, the son of the woman, the mistress of the house, became sick; and his sickness was so severe that there was no breath left in him. And she said to Elijah, “What have you against me, O man of God? Have you come to me to call my sin to remembrance and to slay my son?” He said to her, “Give me your son.” And he took him from her bosom and carried him up into the chamber where he stayed and laid him upon his own bed. And Elijah cried to the Lord and said, “O Lord my God; have You brought further calamity upon the widow with whom I sojourn, by slaying her son?” And he stretched himself upon the child three times and cried to the Lord and said, “O Lord my God, I pray You, let this child’s soul come back into him.” And the Lord heard the voice of Elijah, and the soul of the child came into him again, and he revived. And Elijah took the child, and brought him down out of the chamber into the [lower part of the] house and gave him to his mother; and Elijah said, “See, your son is alive!” And the woman said to Elijah, “By this I know that you are a man of God and that the word of the Lord in your mouth is truth.”

I explained to Sam that at first it felt like it was too much to bear when we discovered she had Leukemia and know we were told she had Graves disease but even though we felt like it was too hard for us, we serve a God in heaven who knows our frame, knows our needs and all we need to do is to ask and He will give us what we need. I told Sam I felt like I needed faith and was encouraged that the Bible tells us that our faith only needs to be as small as a mustard seed. I told her I was going to pray and asked her what she felt she needed? She said she needed joy. So then I prayed and God came and then immediately after I finished praying the nurse came to take her in for her scan. As she had the scan I ‘googled’ Graves’ Disease and I could feel my heart beating inside the cavity of my chest and being the melodramatic person that I know that I am I could hear it the tune of the Titanic singing “My heart will go on” inside me mind. It even made me laugh a little bit which probably seems weird.

We were in nuclear medicine having that scan for such a long time. Sam got a very stiff neck from lying down on that hard surface without a pillow and they kept stopping to ask lots of questions. Then they would go away and come back and ask more questions and Sam and I were both very confused about it all. Sam was calm and I also had a peace in my heart. I know that God has given me strength for this journey. I know that He has put the word of God within me over many, many years so that it would be my sustenance. Even though my heart grows weary, I put my trust in the Lord. He is my hope, He does not disappoint.

Though many enemies gather around me, The Lord will deliver them into my hands. I, like Abraham, will grow strong in faith, confident that He will do what He has promised. I know that God will give me grandchildren of my own but also spiritual grandchildren who will come to know God through my faith because in the face of all this I will not back down. I rejoice that when I am weak, He is strong. I rejoice that no weapon formed against me can prosper.

After much waiting we finally saw the endocrinologist. He was confused because she didn’t have Graves Disease though he was completely convinced by every single piece of evidence in the blood results and her weight loss and her heart palpitations that she did. She does have thyroiditis however which isn’t good but it will pass. All of this will pass. The Leukemia will pass, the thyroiditis will pass. My God will show that He is able to do for me what He did for the widow woman. He will put bread on my table and health in my children. They will live long lives.

Longtime ago when my leg was broken in a car accident when Jack was two, I had an encounter with God. He spoke to me in that season and said to me

Deuteronomy 30:15- 20

See, I set before you today life and prosperity, death and destruction. For I command you today to love the LORD your God, to walk in his ways, and to keep his commands, decrees and laws; then you will live and increase, and the LORD your God will bless you in the land you are entering to possess.

But if your heart turns away and you are not obedient, and if you are drawn away to bow down to other gods and worship them, I declare to you this day that you will certainly be destroyed. You will not live long in the land you are crossing the Jordan to enter and possess.

This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life, and he will give you many years in the land he swore to give to your fathers, Abraham, Isaac and Jacob.

I believe that God promised that word to me and I stand on it today for my future and my children’s future. All the good things that God has promised me are coming to pass just as they did for Joshua. Though the enemy surrounds me, the Lord delivers them into my hand. Just as He did for Deborah and Barak in Judges 4: 14 – 15 God will confuse the enemy and he will abandon his chariot and run away on foot.

When we know God’s favour on our lives, He will fight for us. Even when we are overwhelmed we must remember His promises to us. God will go before us but we must continue to be obedient. In the Old Testament God used a woman called Deborah because she recognized God’s voice and refused to be intimidated by the enemy. We must do the same even now. No matter what comes against us. God is preparing His army. We must live prepared lives. We are not alone.

At the end of the day we went to 12A to gather our things and one of the nurses agreed to bring Sam to the patient pick up area in a wheel chair. I raced to the top level of the car park to get my car and in a moment I looked over the panoramic expanse of sky. The sun setting over the Blue Mountains was magnificent. A bright orange filled the sky accompanied again by the words of a song. (I know God has fun with me!)

I could hear Brooke Frazer singing :

As surely as the sun will rise
You’ll come to us
Certain as the dawn appears

Chains be broken
Lives be healed
Eyes be opened
Christ is revealed

I have decided
I have resolved
To wait upon You Lord
My rock and Redeemer
Shield and reward
I’ll wait upon You Lord

You’ll come
Let Your glory fall as You respond to us
Spirit rain
Flood into our thirsty hearts again
You’ll come
You’ll come

We are not shaken
We are not moved
We wait upon You Lord
Mighty deliverer
Triumph and truth
We wait upon You Lord

And by the time my car had made one revolution around the car park the sky was completely black. I sobbed, so thankful to God for showing me the sun, just in time.

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Little Princess

We resist the temptation to succumb to depression though the walls are painted a shade of insipid green.
We resist as we look over the view of factory yards and the overcast sky.
We resist being angry with life as we sit trying to hear the dialogue of the film on the laptop over the patient’s conversing in corridors and the clashing of food trays being slotted back into the food trolleys.
We smile when a cranky old lady holding her husband by the arm with one hand and a portable fan in the other walks towards us in the ‘Dolphin Room.’
I hear her muttering to him, “Just look at these young folk who think they can just take over the place” then unapologetically opens the door to announce they’ve been sent to sit in here while they wait for a bed.
“Of course that is fine!” I respond moving Sam’s drip pole that’s stacked three levels high with chemo and fluids and make space for them in this tiny room which was probably once a broom cupboard. In the same angry tone she informs me she’ll need a power point for her fan, noticing that both points in the wall are occupied, one by Sam’s drip, the other by the laptop.

“That’s okay then, we’ll go somewhere else,” I respond faking all the grace I can muster.
“We’ll plug into that power board you have there!” she replies and at that I feel the blood rush to my head.
“That power board has my daughter’s chemo connected to it and you will not be plugging in your fan.”
Her husband shakes his head apologetically in a way that reminds me of Richard in my favourite British comedy ‘Keeping up Appearances’.
“Well, they can’t just take over like that, dear.” She continues as they make their way back down the corridor.

We are so thrilled on Friday night when two of the nurses find us in the ‘Rainforest Room’ at the end of our nightly screening of ‘Master Chef’ to congratulate us that they have moved all our stuff into the single room. They are so excited for us! It’s like we have won a prize.
We enter the room and Sam throws both arms in the air. “Yes, my own room!” and almost twirls but realizes she’ll be tangled in tubes and
dancing close with Darren the Drip. I’m slightly taken aback despite her victory dance. I’m back in the room we found ourselves in five months ago. My mind flashes back to that first night on the blue vinyl chair that folded up on me every time I moved. I’m back at the place where it all began. Stuck in the chill of a room that has nothing to cushion the shock and despair, nothing of beauty to distract my gaze.

I am Becky (from ‘The Little Princess’ by Frances Hodgson Burnett) at  the top of the rickety staircase, hidden in a room behind a loose paling of wood. Forgotten!

And then I remember to focus on the truth of Him who has called me. I take the hands of my ‘Sarah’ and we imagine that our deserted attic
is furnished with bounty and provision. The enemy may have sent us here to mock us. He may think he can convince us that there is no hope but we know the truth. Our Father will turn this around.

“Not by might, not by power but by my Spirit, says the Lord.” Zechariah 4:6

On Saturday night we studied Zechariah together.

The Angel of the Lord stands by every night and day. He stands by when I leave her alone in that chilly room with the reflective tinted window that acts like a mirror by night and distorts the colours of the sky by day. There are no curtains or soft home furnishings to buffet the sterile room. There are no lamps to create a mood but rather humming fluorescents above our heads attracting nothing except little fruit flies.

The Angel of the Lord stands by her when the evil night time nurse verbalizes her shock at seeing my Sam in her sleep hat, commenting that she forgets it’s a wig she wears by day. Like it was with Joshua in Zechariah 3:1 “The guiding angel showed me…Satan standing at Joshua’s right hand to be his adversity and to accuse him.” And though the words are meant for harm the words wash off her. Sam and I stand on God’s word together and “Return to the stronghold [of security and prosperity] prisoners of hope” Zechariah 9:12

This same evil nurse refused to check the blood levels or call the doctor on Mothers Day so that we could get home for lunch. Yet she is the one who misses out when the other nurses, doctors, social workers, orderlies and even cleaning staff gather in our room for conversations just as the children snuck into the attic for stories on Sarah’s bed in ‘The Little Princess’.

Surely the Lord has “prepared a table before us in the presence of our enemies.” Psalm 23:5 and “The Lord will be a wall of fire round about her and I will be the glory in the midst of her.” (Zechariah 2:5) And again, like Sarah, we find a piece of chalk and mark the boundary. By the lamplight of God’s word we consider in His promises and our responsibility.

“And the Lord answered the angel who walked with me with gracious and comforting words. So the angel who talked with me said to me, “Cry out.”

So we pray together that through all of this, God will use our lives to establish His kingdom in the earth. That the heart of compassion he is placing within us will be powerful for healing and salvation in others.

“Sing and rejoice O Daughter of Zion; for behold I come and I will dwell in the midst of you. And many shall join themselves to the Lord in that day and shall be My people. And I will dwell in the midst of you.” Zechariah 2:10,11

So just like ‘Sarah’ we remind ourselves that ‘all girls are princesses.’ We have a responsibility to rise up and to be all He has called us to be. In spite of persecution and opposition, in spite of evil nurses with issues and bitter old women grieving because their husband has cancer! For who are they but “a great mountain of human obstacles …they shall become a plain [a mere molehill]!” (How good is God’s word?) “Grace, grace to it.” Zechariah 4:7

Sam and I feast on His word. We exchange revelations, dreams for the future, reflections from the past. He will make a way even when there is no way. Highways in the desert.

“The King’s daughter in the inner part of the palace is all glorious; her clothing is inwrought with gold. And she will be brought to the King in raiment of needlework; with the virgins, her companions who follow her will be brought to You.”

Tonight, as I write this Sam is receiving the last bag of chemotherapy for the first round on this new protocol. When the doctor is happy with the blood results she’ll be allowed home. Then we’ll return 3 times a week for blood tests until the levels are high enough to return again. Please pray that the molecular residual disease is disappearing. Pray for our miracle. Pray for a strong recovery. For more specific pray requests that are updated regularly click on the link in the ‘Blog Roll’ called “Prayers for Sam”

After typing all this into my I phone notebook and sending it off to Bronte for editing Sue and Georgia arrived with a massive basket from Silvia, laden with tureens containing soup, pasta, sour dough bread, silver cutlery, linen cloths, fine china and we dined in the Rainforest Room a meal fit for princesses. Sue spoiled us with Lindtt chocolate, lemonade, peach ice tea and mini magnums. Georgia and Sam laughed together like sisters do. Indeed the bounty of our God is great.

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