Tuesday, 21 February 2012

Waiting for News...

Yesterday I finally cracked. Blue fell poorly with yet another virally type illness while staying with Allotment Junkie last week, and he still hasn't shaken it off. He has a 'whirry' head. He occasionally spikes a temperature. He was sick on the train home. He has periods of no energy, other periods where he is fine. I had a reassuring conversation with his consultant on Friday and we arranged that I would take him to see her on Wednesday, but he didn't make it back to school yesterday and with the Husband and I both working at home, we kept worrying and worrying. This is his third period of non-specific illness in the same number of months. He's been off colour for a while. He only ate 1 fajita (instead of his usual 3).

We still have 'open access' at the hospital, a privilege available to us while Blue continues in the 'remission' period from leukaemia. We have been reassured that if ever we are worried, we can bring him along. Mostly, I try to resist, try to follow the 'normal' route of going to the GP. All through his treatment, I craved normality, but after being afforded pretty much immediate care on demand, sometimes it's hard to remember what 'normal' can mean - or be patient with it - but we do try. The unit at the hospital is fabulous - a kind of half way house between the GP and A&E or the paediatric in-patient ward, but they are massively under pressure. This is the second time since his chemo finished 2.5 yrs ago that I have felt so paranoid that I have made use of that privilege.

I took him in yesterday early afternoon. We waited - me with my cross stitch, Blue with Mariokart on his DSi. We are seasoned 'waiters'. We saw Blue's lovely consultant and she was wonderfully reassuring - no bruises, nose bleeds or swellings? No. Internal organs feeling fine. Glands up? Fruity cough? Yes and Yes - he has the cough that nearly every child at school has. It's almost definitely viral, she said, but we'll do a full blood count and check for glandular fever at the same time just in case. And here's a prescription for some antibiotics - see if we can clear up the cough.

That was nearly 24 hours ago. I have been waiting and waiting. I called at 9 last night - when he was having treatment, we would usually get the results within a couple of hours, but I knew they had been very busy, so I tried to be patient. They would call me back.

At 10.00 I called again. They only had a small part of the results back. It would be better to call in the morning. I called at 9 a.m. The consultant will call you back. I called at 12.30. By now, I am so tired (I was up twice in the night: Pink fell out of bed and Blue woke with a headache at 2.15 a.m.) and paranoid that it's hard to think straight. Rationally, I tell myself that he's fine as the consultant says, it's viral, and there are plenty of sicker children requiring attention hence the delay. However, the irrational part of my brain is screaming at me. Why aren't they calling? WHY? It's because it's bad. They are talking to the regional centre at Southampton and making a plan. It must be bad. WHY HAVEN'T THEY CALLED?

They called.

Apparently it is good news. The glandular fever screening came back negative and there is no evidence of 'anything nasty' on the blood film - by this she means mutated cells suggesting the presence of the cancer. But his neutrophils (infection fighting cells) and platelets (blood clotting cells) are slightly low. This is consistent with a viral infection but she wants him to have another test next week to check that they have come up - as they would do assuming the virus is under control. Unfortunately, I still remember when low platelets meant hour-long nosebleeds and transfusions, and low neutrophils meant instant hospitalisation if his temp went above 38, accompanied by a mandatory 48 hrs of IV antibiotics while they confirmed what was causing the temperature. It wasn't happy place to be. I am trying to be reassured, but it's hard. When we were trying to work out what was wrong with him the first time round, it never occurred to us that it might be cancer. We could only imagine things in abstract terms - what might it mean to have a properly ill child. It didn't actually occur to us that he might be 'properly ill'. But now I know what it's like. And it's terrifying.

So for now, I have to put on my happy face and do some more waiting. I am sure it will be fine. After 2.5 years in remission - it has to be fine, doesn't it?

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