Thursday, 8 December 2011

The very beginning

Every day I still pick up my work e-mail.  I read through all the issues and keep in touch with what's going on.  I think it's because I remain hopeful that I will go back.  It also helps me to feel less detached from what my life was last year, before all of this began.

It started with pains in her side.  She was walking awkwardly.  I took her to the doctor who told me that it was swollen glands in her stomach from an infection, and that it would pass.  This was early October 2010.  A week later she was still suffering, so I returned to the GP.  This time a different one said it was a pulled muscle and to give her ibruprofen.  

When this settled, she went on holiday to Egypt with her Dad.  She was violently sick there and ended up being hospitalised.  She had many tests done in that hospital.  It concluded an elevated white count and an enlarged liver - both signs, we now know, of leukaemia.  However, the body can react this way to infection too.

I took her to my GP when she came home, as she was still being sick.  He said it was the end of a tummy bug, and not to worry (this was nearly 2 weeks after the holiday).

I took her to school.  When there, I was summoned because she was sitting outside the medical room.  Her hands looked blue, and she looked so poorly.  By this stage, she was hardly eating and she was really wiped out all of the time.  I had a discussion with her Head of Year, who suggested I take her to hospital because 'you hear horror stories'.

I decided to give my GP another chance and asked him to ring me.  Strangely, he called just as we were returning home past the medical centre, so I swung the car into the car park, answered the phone and asked him whether he wanted me to bring her in to see him, given we were just outside.  He declined.  He told me to bring her back in a couple of hours with a wee sample as it was possibly colic.

I took her to A&E instead.

I am not somebody who likes conflict.  I always trusted my doctor and wanted to be fair to them - I am not somebody who goes out of the system by nature.  However, I have learned this year the hard way that if you are ever in doubt, go over their head.  With respect, doctors do not know everything.  I have since been told that many GPs will never see a case of leukaemia in a child during their entire career.  The symptoms can be vague.  My daughter presented, in the end, with swollen joints, lethargy, random sickness and a low white count (it dropped after Egypt and stayed low).  Many expect to see unexplained bruising or elevated white counts.  Things are never straight forward.

When we went to hospital, with the symptoms outlined above, they started to investigate her for Crohn's disease.  We started in the hospital in mid November.  We were still awaiting appointments by Christmas.  

I still do not know why her severe anemia - another symptom of leukaemia - was never picked up on her blood tests.  She was bright white and falling asleep throughout the day.  It was like having an old lady in the house rather than a 12 year old.  My parents took her to the pantomime in December and she stayed overnight with them.  When  they returned her home, my Mum was so worried about her.  She'd been complaining about shoulder pain, so they'd taken her to A&E for an X-ray, which showed nothing.  She'd refused to eat and taken herself off to bed in the early evening.  As my Mum was telling me this, my daughter was falling asleep on the sofa next to her - in the afternoon.

The next day I took her back to hospital.  The nurses commented on how poorly she looked, but the doctor in A&E said she was fine.  I cried.  I'm not a crier, but I started crying and he looked guilty and said he would ask the paediatric doctors whether they wanted to do anything with her.  The doctor from the Children's Assessment Team came in and abruptly sent us home to wait once again for an endoscopy that we were already waiting for.

Christmas last year was a somber affair.  We were at my parents' house.  She was tired, poorly, wiped out, had no appetite.  We were all so very worried about her.

After Christmas I couldn't return to work as I had a throat infection that had left me unable to talk.  I was sick in bed with a temperature, so I stayed away from my daughter who was still poorly.  In the evening on the 5th January, I went in to check on her and her eye had drooped down her face.  I thought she had had a stroke.

As I was ill, my husband took her to hospital.  Finally, they agreed to keep her in.  They started a number of tests over the next few days, then allowed her home at the weekend.  At this stage, the consultant, who was wonderful and reassured me that they would settle this once and for all, still felt it was Crohn's.  Various other consultants from different departments agreed with him.  When she returned on the Monday they asked to repeat blood tests as something unusual had turned up in the blood, but they felt it was because the sample was so small.  My daughter is very difficult to take blood from - more on that later, I think.

We were once again sent home, on the 10th January, to wait for the endoscopy the following week.

Teatime on the 11th and the consultant phoned.  We had to go back to hospital - LGI - to Ward 76 immediately.  He would wait for us there.  He couldn't discuss anything over the phone.

I couldn't drive.  The hour waiting for the taxi was one of the longest of my life.  I tried to ring my Mum, but she was in that limbo between leaving work and arriving home.  I rang my sister in tears.  I text people.  I was panicking, waiting.  Daughter was also upset as we obviously knew something serious was up.

When we got to Clarendon wing, I saw the signs straight away.  Ward 76.  Children's Oncology.  I know what Oncology means.  My Mum and my sister work in hospital.  I watch Grey's Anatomy and House.  You can't confuse people with medical names so much these days.

We were greeted by a nurse who took us into a bay.  I had contacted her Dad who was on his way.  Usually, when your child is first diagnosed with cancer, they let you have a side room.  Unfortunately, it was sick season because it was January, so illness abounded.  We were put in a bay with two other families.  Both girls were well into treatment - they had no hair.  One had a feeding tube.  We knew what was coming.  (They were both wonderful families, by the way, really supportive.  It must have been difficult for them too, having to be there as we found out what was wrong with our daughter.)

The nurse took us into the treatment room, with the consultant from Children's Medicine.  It was there that he told us that it appeared my daughter had leukaemia as they had seen the blasts in her blood.  They would do a bone marrow the next day to confirm.  My daughter wept.  

I thanked him.

He said nobody had ever said thank you before.  I told him it was because at least now we knew; it was the end of a three month slog of sickness trying to get answers.  It's also because I am inherently polite.  I am actually appalled at myself that I didn't scream and rage and weep.  I'm too stiff upper lip for my own good.  I am still disgusted with myself.

If you have made it through this beast of a post, thank you.  I will tell you more later.  I'm sure you could do with a rest.

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