Monthly Archives: April 2009

His Rest

Mostly people are well behaved in 12a. They enter like obedient puppies, heads hung low, submitting themselves to the treatment, trusting the nurses know what’s best, anticipating the reward of going home.

Going home is the equivalent of a liver treat at the end of puppy school. “Isn’t it great that your going home!” the nurses remind us and other patients at the end of everyday.

Every now and then a patient arrives making it evident that he or she isn’t going to tow the line. It makes my day on my chair more interesting. It’s hard to read quietly with all that happens in here, so mostly I observe, write, and think.

That is, when I’m not actively defending my daughter, or asking advice or down in pharmacy filling the endless scripts for the drugs she requires on a daily basis.
You can tell which patients are new. They aren’t as confident, they complain about how long they’ve been waiting, they still have their hair. They are happy though to be served cordial and Arnott’s ‘Nice’ biscuits from the food trolley at 10:15am and sandwiches at 12:30pm.

We bring our own lunch and I’ve made friends with all the staff who serve the food and drinks. This way I hope they’ll resent me less when I’m under their feet in the kitchen and occasionally they offer me a drink as well as Sam. I’m sure it’s against regulations.

Today there’s a new guy in12a. He arrives in King Gees looking like a fan of Steve Irwin. It’s clear he isn’t a fan of being here. None of us are. He refuses to sit in the denim blue ‘Jason’ recliner and opts for the visitor’s seat instead. “It looks disgusting and dirty,” he tells the nurse who graciously informs him that the choice is his but they are cleaned and sterilized every evening.

The nurses are amazing. All day long they try to make things as easy as possible sympathizing, listening; providing advice and as much
information as possible. Today they are listening to ‘Love Songs of the 60s’ and laughing together behind the desk.

This morning we are arrived at 8:00am for the blood tests and now we wait for the bone marrow biopsy. It’s 11.30am. Sam is reading Harry Potter, she is calm and unfazed, though extremely hungry. It’s a drag that she has to fast for sedation.

I’m thinking about the promises of God. How we inherit them through faith and patience.

Lots of people have asked me what happens now since Pastor Phil prayed for Sam. Can we take a test to show she has been healed? Can the treatment stop? Does she continue with chemo?

Others, countless others have loaned us and bought us books! Recommended diets, suggested alternatives to chemotherapy.

Like having a newborn baby it seems everyone has advice for me.
Beautiful, well meaning people who want to rescue us from the pain.

Everyone who has known someone with cancer empathizes. It’s human nature, I guess, to make comparisons, to give advice, to seek to encourage and lighten the load.

We’ve decided to do two things. One is to put our faith in God, the other is to listen to our doctor. We are committed to believing that Sam is healed and we are walking out her healing by receiving all the treatment her doctor is recommending.

In the case of leukaemia, the proof of healing is in clinical trials.

We need to get two negative results in a row to show that she’s in full remission. The first result will come from today’s bone marrow biopsy. The next one will come a few months from now, after the next bone marrow biopsy.

We are in complete faith for these two negative results. Unfortunately we must be patient allowing the treatment to continue until we can get this evidence. Without this proof the doctors give Sam little hope. They fear she will relapse. Relapse patients have a 5% chance of survival. We are not afraid.

Sam is healed and we continue the process of treatment until the doctors agree.

Many cancers can be cured by diet but there is no recorded evidence available to show that this is possible in the case of leukaemia. Some chemotherapy drugs are derived from plants and natural sources but food in and of itself can not penetrate the bone marrow and cause it to create healthy cells.

The biopsy procedure only takes about half an hour. First Sam receives a new wrist band, hears the two A4 pages of possible risks, read aloud and then autographs the forms. Her vital signs are monitored, her weight considered, an area of her back is marked and then a first dose of Medazalan. She seems to be rested but opens her eyes wide awake when the icy cold disinfectant is rubbed over her lower back. More sedation, then the whirr of the blood pressure cuff inflating and deflating.

The doctor takes his time. That in itself soothes me. I feel like Sam is a person not just another task to be completed in an already busy day.

A large, green sterile cloth is laid over her back. It has an access hole to isolate the site area. She has to hold still. The first injection of anaesthetic makes Sam cry out loud. I can see that she’s tempted to stretch out her legs but she controls herself. I feel helpless but remind her she is strong and can do this.

After all this the biopsy can take place. I am brave, glancing over
the green cloth, I watch. I see the tools, the needles, all the equipment. I see a cork screw like implement protruding from my daughters lower back, the concentrated face of the doctor, immediately I wish I hadn’t looked.

Focusing back on my job here, I squeeze her hand, helping her breathe. Breathe in and out 1,2,3,4 and in! So it goes throughout as he tugs and pulls and my legs feel weak.

The extracted, pinkish blood fluid is collected in petrii dishes and smeared over microscope slides. The procedure completed brings tears of relief. For the first time Sam begins to sob and her mascara smears the white pillow slip.

When she has finished crying she asks me to turn the pillow over, wipes her face, asks to eat or drink. But she has to continue fasting another hour. She is craving French onion dip.

It’s 1:30pm now and she’s sleeping. There are only 2 other patients here.

Her vital signs are checked every 15 mins for 2 hours after the biopsy. They are taking every precaution today.

Tomorrow she starts the oral chemotherapy three weeks behind schedule. Then next Monday she will be admitted at last.

The ‘Presence Conference’ was incredible. We arrived with great expectation and were not disappointed. Pastor Phil’s prayer and the support of the crowd lifted us.

I am thankful to God that as we cast our cares upon Him the yoke is
easy and our burden is light. We enter His rest.



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Hand Holding

The unfamiliar, heart wrenching scream of a toddler becomes louder as her mum who is holding her approaches the waiting room. It’s an adorable little Asian girl wearing a pink hoodie, coral tights with a smiley face on her bottom and frills around the cuffs. She wears Dora shoes and is squinting her eyes together, squeezing out tears!
“Oh, what’s wrong, sweetheart,” I ask and her Mum just smiles at me registering kindness in my voice with a nod! Then it becomes obvious to me. She doesn’t want to be put down, she doesn’t want to walk. She wants to be held close to her mummy. Two lanky teenage boys are beside her, trying to help but it’s clear that she only wants her mother.
“Oh,” Sam says. “She’s so beautiful. She reminds me of Max.” (who Sam used to nanny).

I’ve been thinking of babies all day so it’s surprising to see one in 12a. Amongst other things, today is the day that Sam has her zoladex needle. She has this every month. It’s a huge needle that injects a pellet into Sams tummy. It’s an experiment that will hopefully preserve and protect Sam’s ovaries until she finishes her chemotherapy treatment.

There is a theory about ovary preservation that the doctors have developed. Well, it’s an observation really! The studies of prepubesant girls with Leukaemia found that they got their periods at the end of chemo treatment but girls already in puberty did not get their periods back. So the idea is to put the period on hold throughout treatment and to stop the body from ovulating. The doctors hope that through this procedure Sam will be able to produce a period at the end of treatment.

Today in gynacology we reflected on those first two days here. What a whirlwind of information we were caught up in. I can hardly believe that I didn’t register that my daughter was being tested for Leukaemia. I didn’t think it when my GP rang me at work and told me to go and drive Sam to ER, that her counts were low, that he’d called already and they were expecting us. I didn’t register when we signed the risk forms for a blood transfusion, or when they asked about headaches or examined her back. I didn’t register when they asked Sam three times that day whether she had siblings or even when they did that very first bone marrow biopsy.

Despite the fact I’ve read ‘My Sister’s Keeper’ by Jodi Piccoult, I didn’t register nor even for a moment consider, that my daughter might have Leukaemia.

I was planning for 2009 to be a good year. I thought Sam might have a blood transfusion and be sent home (since her iron was low, HB was 26 on arrival) but I never suspected anything as sinister as Cancer.

In hospital today Sam and I reflected back to that first day when she was told by the doctor that…

“1. She has ALL Leukaemia
2. Without treatment she would be dead in 3 months, with treatment she has a 60% chance of survival,
3. That she would be unlikely to have any children
…Any questions?”

It had been that blunt.

The next day the gynecologist came to visit to talk about the possible options to preserve the hope that Sam would one day be able to have babies. The day after that Sam agreed to do everything in her power to make that possible. That was when she started the ‘Zoladex’ needle.

We laughed with Jayne today recalling the events of the last three months. Jayne is kind and tries to find an unscarred piece of flesh to inject the needle. Sam has been receiving needles everyday for the last 7 days to increase her white blood count, so her tummy and her arms have been jabbed all over. Sam squeezes my hand and I am so proud to be the one whose hand she wants to squeeze more than anyone else’s. As horrible as this all is, we are in it together. Our bond is tight. I pray over my grandchildren as I squeeze back reminding her of how incredibly brave she is.

The voice of the little Asian girl is the sound of a promise. I am anticipating the day, in years to come when a similar scream comes down the corridors of my house. Perhaps Sam will be going away for the weekend with her husband and her baby will want Sam above anything else. This is the joy and frustration of motherhood. To be the ONLY one who can make it okay.

As I overhear the nurse, I discover the CNC is about to give this sweet Asian mum ‘Ara C (Cytarabine).’ I say to Sam, “She’s having Ara C,” and Sam looks at me with compassionate eyes. “The vomiting chemo,” Sam says and we both feel the weight of what this could mean for the family in front of us. The older boy takes the toddler but the screaming gets louder and she begins to kick his shins. “Mumma, Mumma!” I wonder if the word is the same in every language?

When the mum returns from the treatment room she laughs and takes her daughter to her lap and holds her close. I fossick in my bag for a treat for the little girl. The mum does not speak English and her son says, “It’s okay.” I ask him, “Do you have anyone to help you at home?” And he tells me, with his hands mostly that, “ We have each other.” I am not sure if I am being understood but I feel such compassion that my throat has tight. I am wondering how they will cope, this young family looking after their mum in a foreign land.

Dr Greenwood is his cranky self. I present the blood results on a sheet of A4 rejoicing that all her counts are up. He is cynical. “Of course they are, she’s been having GCSF. What we need is for Sam’s counts to go up by themselves.”

He glances over Sam’s chest where a rash has developed. He is clearly uninterested and tells us to see Yvonne before we go to see what it might be. He tells us to go and schedule a bone marrow biopsy for next Monday and informs me he won’t be here. “Now, these are the things that you need to know from the blood results before the procedure goes ahead.” I write down everything he says suddenly feeling like a medical student responsible to get it right because my daughter’s life depends on it. I’m amazed of how much responsibility we carry for Sam’s treatment. I am thankful I speak English and have a fairly good ability to grasp all that is going on.

Unscathed by his negativity Sam and I are rejoicing.” We are going to ‘Presence’.” (C3 Church conference at Darling Harbour) Reid and Grant are on their way so we can drive to hospital together. We are going to worship God, to hear Pastor Phil speak. It’s what we have been waiting for all week. Just to be in God’s presence with a crowd of people knowing her counts are high enough to make it ‘safe.’

Paul writes (Message Version),ROMANS 8:15-18

“This resurrection life you received from God is not a timid, grave-tending life.

It’s adventurously expectant, greeting God with childlike faith.

“What’s next, Papa?”

God ‘s spirit touches our spirits and confirms who we really are.

We know who He is and we know who we are: Father and children.

And we know we are going to get what’s coming to us-

an unbelievable inheritance!

We go through exactly what Christ goes through.

If we go through hard times with him,

then we’re certainly going to go through good times with him!”


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Seek to understand


I graduated from Teachers College thinking I knew everything a parent could possibly know about child rearing. I had spent 3 years, full time studying educational theorists, stages of development, the purpose of play and the whole child.

I was enthusiastic and confident, up for the challenge! We had timed the pregnancy perfectly and our baby was due to be born 4 months after I finished my final practicum. Towards the end of my pregnancy there were complications with my health and I was hospitalized for the final month with a condition known as ‘pre-eclampsia.’ I was almost twice my usual petite size and my fingers, ankles and face swollen like a toad fish.

Unfazed and still excited about becoming a mother I was induced at 38 weeks and after a long labour our little girl was delivered by an emergency C-section. I couldn’t wait to be home and despite the recommended 10 day hospital stay I was home in 5 days.

I took to motherhood like a fish to water. It was all I ever wanted to do. I loved my tiny baby, dressing her in little clothes, bathing her tiny body, long walks with the pram and catching up with friends. I felt like I had the most idyllic life and didn’t feel the challenge of parenting until my little Sam reached about 3 months.

Her little personality had began to emerge and suddenly I found myself completely out of my depth. Long before she had words to speak Sam was communicating very clearly that it was going to be her way or the highway. She refused to feed at my breast unless I was completely silent and all the attention was on her. For a month I wrestled with her presenting a bottle ‘for fun’ at 4 months. That day she took the bottle in her minuet hands, plummeted it into her mouth and out again. She gave me the most enormous grin as if to say ‘finally you got it right.’

With that I began to wean her from breast to bottle. I began to discover how different her personality was from mine. Intrigued, I began a search through my development books, mentally documenting how strong and determined my daughter was.

I wasn’t playing with a dolly anymore. This was real. Now my little girl is 21 years old. She is still strong and determined. She still undermines me at times. But I have spent the last 21 years ‘seeking to understand’ her and the two other children we gave birth to after her.

I’m hoping that as I begin to share my stories with you that you will be inspired to understand the little baby you hold in your arms, or the child you just dropped to school or the teenager who grunts when they walk in the door.

Proverbs 20:5 ‘The purposes of a man’s heart are deep waters, but a man of understanding draws them out.’


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The guy in the lift yesterday looked tired. In his hand he held a list:
Phone charger
Black pants
Black thongs

‘Poor guy!’ I said to Sam as we stepped out at the level our car was parked on.
‘Yeah’ she said, ‘made me think of Dad’.

‘Only he takes two lists, yours and mine.’ I replied.

We laughed together as if it was hysterical but then tears came to Sam’s eyes. Nothing is funny at all about being sick and in hospital. She cried as I reversed, as I drove my car down the multi-levels of the car park, as we drove through the turnstile that took my weekly pass and all through the bumper to bumper traffic home from St Leonards to home. I had no words for her and my heart felt like it was drowning under the weight of those silent tears rolling down her checks.

We were released from Aged Care (the only place were there was a bed over the weekend) on Tuesday and returned on Wednesday for a horrible afternoon of chemotherapy. A drug called Cyclophosphamide which can rupture your kidneys. To monitor Sam’s response she is weighed at the beginning and end of treatment, three litres of fluid is pumped intravenously into her body to offset the drug and help dilute it in the kidney. Throughout the afternoon urine is measured and a final calculation is done to make sure she puts on no weight. On departure we are told that if there is any sign of blood in the urine to return to Emergency to be admitted. Check for fevers; keep away from anyone unwell etc.

We were back again today to see the specialist and to have more blood tests. He was surprisingly cheerful which was refreshing.

Sam vomited in the car park when we arrived and so Reid stopped to buy blackcurrant fruit pastels. Sam was still sucking one when it came to her turn in clinic. When the doctor asked to check her mouth for ulcers she obediently stuck out her tongue. The pastille had reduced to the size of a mole and Dr Greenwood panicked. “What has happened to your tongue?” I laughed when Sam announced that it was simply the remains of fruit pastille and he even seemed to agree that it was funny.

Like yesterday, however, nothing about today was really funny. Dr Greenwood asked us to stay until the blood results came back and to not to start the oral chemotherapy drug until the results where back. Reid, who was already late for his Bondi appointment, decided he’d better leave and come back for us. This meant Sam and I wouldn’t get to shop for the boots that I had planned to select now I had teaching money on its way (I did a casual day the other day). It also meant that we would have to sit unprepared for waiting another two to three hours. The nurse came back after the bloods where sent down and said she negotiated with Dr Greenwood to call us when the bloods were back. To hang onto the oral chemotherapy drugs until he spoke to us and that we were okay to leave. I called Reid but he was already on the other side of the Harbour Bridge and it didn’t seem fair to make him turn around.

‘We could go to Chatswood on the train,” Sam suggested and though I knew it was a stupid idea I couldn’t make her wait another minute in the hospital where we have spent the best part of the last two and a half months. So we started to walk stopping occasionally for Sam to vomit in the bag the hospital had given. We made it to the station and ultimately to Chatswood Westfield and both realized it hadn’t been a good plan.

My main goal was to buy Sam an internet connection for the beautiful Apple Mac Laptop that so many incredible people contributed to buying for her 21st. This way when admitted to hospital for the five day stay next week (and every other fortnight till the end of May) she could at least be in connection via email to the outside world.

This task accomplished, we headed to the disabled toilets for more vomiting and then admissions called to say that Sam’s hospital stay has been postponed until 22nd of April instead of the 15th. My heart sunk as I realized she would be in hospital for nearly all of the Presence Conference. It sunk further when I spoke to the nursing staff and they told me we would need to come back at 10am tomorrow morning, Good Friday for a transfusion of FFPs to replace Sam’s platelet count and that we should arrive at 9am Easter Sunday to have more blood tests taken and to wait for a pending blood transfusion to up the counts of her HB! I was so looking forward to watching Pastor Phil paint and to accompany Emma’s Jewish friend from Uni to the service and to having lunch as a family afterwards at home.

On Tuesday we return again for more blood tests and if they are good Sam will have a bone marrow. On Wednesday we will be back again for another Lumber Puncture. At the time of writing this Sam is wiping more vomit from her lips and convincing me that she is fine to go to Grant’s house for a visit.
How can I say no? How can a mum stop her 21 year old from having the slightest bit of fun?

“I know the plans I have for you,” says the Lord,

“Plans to give you a future and a hope.”
~ Jeremiah 29:11 ~
“We are assured and know that all things work together for good
to and for those who love God
and are called according to His design and purpose.”
~ Romans 8:28 ~

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Lumbar Puncture Headache

I write (or type) into my I-phone by the dim light coming in through the hall.

Sam’s been flat on her back in pain since Thursday.

All went well with the lumber puncture. At least that was what we thought at the time. Apart from the two hour delay because no one had ordered the necessary FFPs for the transfusion she needed to restore her platelet count. Oh, and that Sams file had gone missing! I suggested they’d locate it on level 4 in haemotology where Sam saw Greenwood on Wednesday. I was right! The radiologist wasn’t happy to go ahead with the LP until the transfusion was done.

Lovely Sue arrived in time for Sam to be wheeled down to level 2 by the orderly. We were able to wait by Sams side until everything was ready. We prayed with her as well and all was cool when we left to grab a coffee. My niece, Kate arrived soon after that and was there to hear how well it had gone. Straight ahead, no complications!

The rest of the day Sam slept fully peaceful from the sedation while I chatted to Kate and the nurses in 12a.

At 5.30pm, five hours after the LP, Sam sat up and felt pain in her neck and pins and needles down both arms. We waited for the doctor who after getting her to do a series of reflex type tests felt content to send us home.

We arrived home at 7pm after a long day and Sam decided on an early night. Grant was off work Friday so he arranged to take Sam for the routine 10 minute chemo push at the hospital and they planned a relaxing day together. I took the opportunity to take a casual day of teaching, a re-entry to my ‘normal’ life and the chance to earn money for shoes!

As I prepared to leave the house at 7.30am, Sam called me into her room. Unable to lift her head off the pillow and with shooting pains down her spine. I wondered suddenly if I’d done the right thing.

I phoned the hospital, filled them in and Grant came early so she could be seen to straight away…things went down hill since then.

And so we find ourselves in a private room in ‘aged care’. Sam has a ‘text book case’ of Post Lumber Puncture headache. She has been flat on her back since Friday morning in an attempt to get rid of it.

The neurosurgeon explained that when the needle left Sam’s spine the hole didn’t close. This causes fluid to leak from the brain. The MRI showed how Sam’s brain has sagged and now rests on the top of the spine. No wonder she is in pain.

Now we wait.If Sam didn’t have leukaemia it would be fixed with a blood patch but it’s too risky in her situation. I wait by her side so grateful to be the Mum of such a brave, Godly girl. Grateful to Emma and Jack for coping so well at home with Reid. Grateful to Reid for offering to drive out to bring us dinner but settling for cup a soup instead!

On Wednesday Sam has the last chemo treatment for this phase. A long day of fluid IV and chemicals! Not nice but it gets us to the next phase called Consolidation.

Tomorrow we’ll be told the date for the next bone marrow, either this week or next. So we wait, rejoicing that it comes to an end! That we’ll somehow be better, more equipped for life through all this. We count the blessings that cushion the journey. Visits, phonecalls, SMS, emails, twitters that remind us that people are praying and that we will make it! Stronger, enlarged, more compassionate!

Thanks for your continued interest in reading my blogs! It’s therapy for me even if you just skim for what you want to know!People tell me they want to know! So I continue to update you. God spoke to me so clearly the morning of January 28. He woke me with this verse ‘in Him I live and move and have my being.’ (Acts 17:28) I wrote it in my journal before I left for school that day. In the amplified it adds ‘he made from one origin all nations of men to settle on the face of the earth. Having definitely determined their allotted periods of time, the fixed boundaries of their habitations, so that they might seek God, and feel Him And find Him. He is not far from each one of us.’ As I considered that he ‘fixed’ it, I believe He will fix it. God holds us in the palm of His hand. As we seek Him, He is very close. In spite of all this frustration and pain and confusion, He is making a way for us. A highway in the desert! We determined a long time ago to live in Him and on that solid rock we stand.
Clare X

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