Monthly Archives: March 2009

The Plan

Sam is due another bone marrow and lumber puncture. I think they are both next week.

Depending on the results she will then go to the next phase called CONSOLIDATION.

In the two month CONSOLIDATION period her body is pumped intravenously with high doses of drugs she has already been receiving. The doses are so high that it is done in hospital over a 48 hour period. She receives these drugs under total supervision and observation in case anything goes wrong. At the same time she is given a drug called Leucovorin Rescue to minimise negative side effects. The protocol is such that the 48 hours are administered on Day 8 and 9 then she is given until day 22 and 23 before they give it again. Dr Greenwood said that day 22 may be actually as long as a month (or longer) after day 8 depending on side effects. So it isn’t like the lovely school where I work where we realistically number the days until terms end. They are simply the “ideal’ day that the drug would be safe to be readministered. Potentially, all going well, Sam WILL receive these high dose treatments on Day 8/9 then 22/23, 36/37, 50/51 and we will have lovely sun-filled days languishing on lounges sipping fine tea. However, things could be delayed, things could go wrong, things could be slowed down.

The side effects include things like:conjunctivitis, sore mouth, platelets top, low white blood, rash, further hair loss, abnormal speech, confusions, memory loss, fatigue, infection, fever, chills, bleeding, mouth ulcers, difficulty walking, lung problems, shortness of breath, wheezes, diarrhoea. Last week Sam thought she was losing her memory on the small dose. She told Reid on Friday that she was at Change last night but actually she was with Amy and Joel. She also lost her new cardigan and had no idea where. (That would be SO normal for me). She found it eventually! They took some tests at the hospital but decided she was fine to continue treatment. She has also had mouth ulcers which Dr Greenwood thinks are terrible. Our positive girl responded that they really weren’t that bad!!!

Sam is also undergoing other tests now for her voice. Today she has an ultrasound, next Monday an MRI and then an appointment with the ENT specialist after Easter. If things don’t improve she may require a vocal cord operation. But I have no idea when. I think they want to give it twelve months to return of its own accord. We are praying and believing that it is already on its way back.

After Consolidation the Doctor looks at the molecular tests. One test is done after each bone marrow. They look at the last two tests. We need to be praying that Sam gets a – (negative) for both tests. If there is a + (positive) she will then need a bone marrow transplant.

Neither Jack nor Emma are a sibling match so it is complicated if she needs a transplant. Dr Greenwood said that her body could reject the transplant from an outside donor and it is far from straight forward when it isn’t sibling. In fact she would need to go to the Vincent Hospital and change doctors because RNSH only do sibling donors. Even if it goes well she will suffer extreme fatigue. So the future is uncertain. And even though Sam is a total champ and we are in complete faith we do have some hurdles to jump.

Also please pray for another Sam who has AML and has just had a bone marrow transplant. He is having terrible nausea and fatigue. He is 19 and his family all know Jesus. We met them in 12A and are believing together for the complete healing of the two Sam’s.


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High Tea 21st

The Sunday sun was already shining when Silvia, Bronte and Rozzi arrived early with the trailer filled with chairs, the urn, coffee makers, the pie warmer, picnic rugs, market umbrellas, lanterns, fresh flowers and platters.

They made sure all the food was ready, the running sheet written on the glass splash back before they humbly slipped away as if it were the fairies that did it! Of course the men were busy too! Reid, Skender, Brad, Bailey, Josiah and Luke. They were edging the lawn, doing the heavy lifting, setting up all things electrical. Paul Howard arrived with culinary delights from Glynis kitchen. Brad’s plied us with yummy coffees too! My mum arrived just before two with all things English, yummy treats to add to the supplies. Pam, Reid’s mum, arrived all the way from the Gold Coast- she’s an excellent vacuumer!

BIG thanks for the wonderful cake generously donated by Jack’s boss, Nick from Michel’s Patisserie in Warriewood! It was magnificent- see photo.

Minor panic that I forgot Step 1 on the running sheet – light the oven! Whoops! Penny started putting out the cold food first! No one would ever know! Except that I’m telling you.

Sam arrived with Grant relaxed, looking stunning! Grant relaxed (as always) Sam stunning (as always too). The picnic Bronte had packed them must have done the job of refueling her! ‘I was meant to have a blood tranfusion after chemo, but I would have missed the party!’ Sam whispered as she came in the kitchen.I decided to put my trust in God…and the stool we borrowed from Scott and Sue to prop behind her as she welcomed the 150 guests that filled our home and garden!

Thanks to Sue for helping make the food prep so much fun on Saturday too. Tracey, all those bits you gathered were vital! Many arrived laden with more food and an abundance of gifts! Silvia (proudly this time) displayed the tiffany cupcake tower under my chandelier. Marg found a corner to dollop jam and cream onto 100s of tiny scones she’d made. The place was buzzing! All generations in one place!

Amy, Millie, Sonja and T gave great speeches! Followed by Jack, Emma, myself and Reid. What an amazing community of people we are a part of! New friends, old friends, beloved family! “One thing I desire, that I may dwell in the house of the Lord forever!” ~ Ps 84. It was a chunk of Gods house in our house carrying God’s love to Sam…Celebrating life, love, our future.

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Network Timeout

“Network Timeout

The requested site did not respond to a connection request and the browser has stopped waiting for a reply.

* Could the server be experiencing high demand or a temporary outage? Try again later.”

These were the words that appeared on my screen today when I tried to load a website. I read it so quickly that the thoughts in my head read it as “Could the server be experiencing high demand and or temporary outrage?”

For a moment I went out in sympathy for the website and felt its pain. ‘I too am a sufferer ‘experiencing high demand and temporary outrage,’ I thought to myself and decided to graciously give the website timeout.

Of course I had read the words incorrectly but suddenly realized that this story is quite a good starting point to put my readers in the picture of the series of unfortunate events experienced by Sam and me, her mum, throughout this week.

In the last 7 days we have been seriously inconvenienced. You will remember that when I last wrote, (sorry ’twas the time before), Sam and I were in Westfield Chatswood. She was vomiting and I was feeling bad. Feeling bad is a fulltime occupation for most mums but this day I really was thinking my good intentions had led to a disastrous situation.

Reid eventually picked us up that day and on the way home I called the hospital where the nurse informed me that it was crucial to Sam’s health that we arrived back at hospital no later than 10am , Easter Friday morning to receive FFP’s (Fresh Frozen Platelets) since her platelets (these help your blood to clot) were so low. Despite my begging to arrive later to allow us to attend C3 Easter Service there was no way the nurse was going to bend.

So we dutifully made our way out to hospital, drove through the multi-storey car park, made the all stops lift ride to the 12th floor, collected our now extremely large file from reception and looked for a seat. There were no seats! The place was packed to capacity. So we opted for a bed instead. Sam lay there and we waited. Finally our turn came and the lovely nurse Margot came to us asking why we had come. “FFP’s,” we chorused. Margot looked confused and checked the blood results on the computer. “There seems to be some mistake,” she said returning to us, “We don’t transfuse when the Platelet count is 29 usually? Let me call the doctor.”

It had been a mistake! The nurse had read the results wrong and we didn’t need to be there. I smiled, asked which nurse would be there on Sunday and explained that we had been told that Sam had to be here on Sunday at 9 am for blood tests and asked if we could possibly come at 11am since it was Easter Sunday and all we wanted to do over Easter was to go to church. Nurse Elaine agreed that the inconvenience of today had been unfortunate and was happy to make the changes to our Sunday booking since she was rostered on. She was sorry.” We do our best but some days we get it wrong.”

How soothing are the words of a genuine apology.

We walked to the car, me madly sending an SMS to Reid to see if Tracey could reallocate the seats for us for Sunday. Hooray we are going to church!!!

So on Sunday Sam went with Grant for blood tests and the results came back showing that she definitely needed a blood transfusion, red blood – not platelets. By Monday morning Sam woke with all the signs in her body that she desperately needed that blood, so again Grant patiently drove her and sat by her side in hospital from 10am until 3pm while she received her transfusion. I felt bad! I was enjoying a picnic at Clareville with Reid and friends. In the back of mind I was dreading Tuesday and the pending bone marrow biopsy.

We arrived at hospital on Tuesday morning at 8am for blood tests. The results came back and I asked the nurses if we were going ahead with the bone marrow biopsy. (I did write about this on Tuesday didn’t I? Keep reading…you won’t believe what happened).

Sam was given a bag of FFPs and then the doctor and the nurse (not the lady with the alligator purse) arrived drew the curtains and proceeded with the most horrible procedure. It is too horrible to dialogue. It is the worst thing a mother can see her daughter subjected to. And so last Thursday I wrote about all the things that were going on around me at the time of the bone marrow biopsy.

Can you believe they don’t do a bone marrow biopsy in a private room?

THE WORST THING: The worst thing that happened this week was on Wednesday when Dr Greenwood called. He phoned to tell me that he had been off sick yesterday and that Sam’s neutrophils were SO low that he would like to postpone the bone marrow biopsy another week. I asked him what he meant since the bone marrow biopsy took place yesterday.

Dr Greenwood (SILENCE…)”Oh I see. I gave specific instructions for blood tests to be done first.”

Me: “Yes, and we went early for blood tests and I questioned the blood tests and the bone marrow biopsy went ahead.”

I felt all the strength draining from my body as I said this.

Dr Greenwood: “That won’t be any good. There will not be any information for the clinical trials in the bone marrow with her neutrophils at 0.0 and we will need to repeat the procedure.”

A response did not come from me at that moment. I had a “NETWORK TIME OUT I was experiencing temporary outrage.”

By Thursday when I saw him in person I had my case fully prepared. Graciously I spoke to him of my role as a teacher and outlined that if I needed a sick day that I would phone the teacher taking my class, my superior and my team of teachers and clearly outline any learning difficulties and health concerns in my classroom. I explained that the teacher replacing me would know if a child was anaphylactic or in any way needing attention.

“How,” I asked “could it happen that something as important, not to mention excruciatingly painful, as a bone marrow biopsy go ahead without anyone realizing it should not?”

“It seems Clare that you are becoming well acquainted with the faults of the system at RNSH.”

The next day I had a coffee at my favourite spot in Mona Vale. I didn’t order the coffee so when the girl delivered it to my table she looked at me and apologized. “I’m so sorry, I’ve made it in a china cup not paper the way you like it. Shall I make you another?”

How could she have known, I didn’t place the order! But her apology for the incorrect coffee cup was heartfelt. I didn’t get a sorry, not even a ‘whoops, my mistake!’ from the doctor about the bone marrow.

So now we wait! Sam is receiving a daily injection of GCSF to ‘up’ her neutrophils and her white blood cells. We return to hospital on Monday for more blood tests. We wait to see the results. When the counts are up another bone marrow biopsy will take place. Then we start the oral chemotherapy drugs for 7 days. Then Sam is admitted for a lumber puncture and 48 hours of IV chemotherapy and another potential 3 days of observation to recover in hospital.

The good news is we might get to The Presence Conference now. We would like that very much.

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Beautiful in His time

Sam and I are so thrilled that her neutrophils are up to .7 and today she starts Part 2 of the Induction Stage of her treatment.

These past 45 days have been amazing, challenging and encouraging. Our days together have been tremendously precious. What an honour it is as a Mum to watch your daughter stand strong in faith every moment despite all opposition. Her smile has captivated everyone we meet and the favour of God is everywhere.

It seems we meet people everywhere in this hospital who know us! From Specialists to trolley boys, we stop to catch up with these people who were unknown to us prior to 28th January!

So many miracles surround us! So many thank you cards still wait to be written.

~ Psalm 23:5 ~
You prepare a table before me
in the presence of my enemies.
We have never in our lives been so well-fed! Every meal that has been delivered has been exquisite. Not to mention the cakes, cookies, banana breads. Our garden is being transformed, our clothes line is erect, my lawns are mowed, my dog is walked, my house is cleaned, Sam’s bedroom is painted and fresh fruit and veges are delivered every week!
It is almost as if life has never been so good!…except for the Leukaemia.
It doesn’t end there either. We have been given vouchers for movies, for books, for a facial, for a meal at a restaurant and so many have generously helped us with cash.
In spite of this incredible provision, I do desperately look forward to returning to work and the crazy life of Kindergarten.
Thank you, Paula for teaching my class,
thank you OFGS for holdings our jobs,
thank you to all the pastors and team at C3 for not only praying but also providing us with practical help and
thank you everyone for standing with us, for praying and for believing!
We still have a long road ahead of us and some days are harder than others but people like you make the load bearable. God’s eternal purpose shines over us and I hold close Ecclesiastes 3:11-14 (the scripture that all our beloved congregation in Chatswood often heard me speak from) that…
He has made everything beautiful in His time.
He also has put eternity in men’s hearts and minds
[a divinely implanted sense of a purpose working through the ages
which nothing under the sun but God alone can satisfy]…
I know that whatever God does it endures forever;
nothing can be added or taken away from it.
And God does it so that men will reverently fear Him
[and worship Him knowing that He is]
~ Ecclesiastes 3:11-14 ~

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