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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4 Comments

Filed under Life

4 responses to “Uncharted Waters

  1. jess robins

    i think of sam everyday, and you claire! You are such a beautiful mum, and I hope you realise how many people in this world you are changing and transforming, through this blog alone. Yours and Sam’s story will move mountains.
    Big Hugs
    x x x x Jess

  2. Louisa Norsa

    Clare, my dear friend what a hard journey you are on but such faith that you have is truly astounding! You are encouraging us all! We continue to stand with you and believe for Sam and for our miracle working God to move as we know He can. Love you lots, Louisa xxxxxx

  3. Dear Clare, grandad and I go down to the depths with you and soar to the dizzy heights when the Lord brings you back to His Presence assuring you He is there with you in all of this.We have His Promises .We can’t tell you how much we Love you and we Know Many are being Blessed by the way you are being used in all of this and the Lord will be Glorified. Is.40 v30 Love you Mam xxxxxx

  4. tarne

    Clare your words are so amazing.
    X

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