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.