anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Final day of treatment

20140205-200118.jpgToday is officially the last day of Anna’s treatment for leukaemia.

It is two years and two months since her diagnosis. She has had oral chemotherapy for most of those 789 days, regular intravenous and brain/spinal fluid chemotherapy, lumbar punctures, daily/weekly/monthly steroids and numerous blood transfusions.

She’s had a portocath put under her skin, a feeding tube down her nose and one very unpleasant bronchial wash.

She has been on antibiotics, antivirals, antifungals, antiemetics and a cocktail of other drugs to counteract the side effects of all of the above. She has had IV fluids, electrolytes, overnight liquid feeds and saline drips.

Pain relief has ranged from calpol to morphine.

She is a frequent visitor to x-ray, and also had ultrasounds, ECGs, CT scans, MRIs and a bone density scan.

She is known to many of the departments at sick kids – neurology, endinocrology, respiratory, orthopaedic and oncology.

I’ve lost count of how many nights we’ve spent in hospital or how many outpatient appointments she’s had.

She still had some walking ability when she was diagnosed but now she isn’t able to bear any kind of weight at all. Her bones are like tissue paper and break with the slightest trauma. She has had seven fractures (femur, knees, ankles, feet, wrists). We have no idea if she will recover any strength.

She’s also had three bouts of shingles, staff epidermidis (at least twice), kiebseilla, para flu, cellulitis, mouth ulcers, UTIs, aspergillus, rsv, septic/deranged liver, various other bacterial/viral infections and an extremely severe skin reaction. And there have been a couple of times when we thought she might not make it.

Although today is a day of celebration, it’s also something of an anti-climax as her steroids were stopped some months ago due to her getting continued infections. She had her last dose of chemotherapy over a week ago as it was stopped due to her low platelets and currently we are in sick kids as she has several infections. She had a platelet transfusion this morning and needs a red blood cell transfusion tomorrow. She’s also had her monthly 4 hour pomidronate infusion today today – her bone strengthening treatment.

She was due to have her final bone marrow/lumbar puncture done today but wasn’t well enough. It will probably take place next week. She still needs to have one catch up intrathecal/general anaesthetic, likely to take place on fifth of March. We will continue to come to clinic regularly and she will be having pomidronate monthly.

However, we are glad to get to today. She is still my beautiful, gorgeous daughter and now we can start planning for the future – Anna, me and Nathan. X

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Anna is much better

Anna is in bed, comfortable and fairly settled. She is still waking for either a drink or to be sick but nothing out of the ordinary. Observations (obs) are back to 4 hourly. She seems to have come through this latest crisis.

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After the terrifying events of Saturday night, she was unbelieveably clear and articulate with the neurology consultant on Sunday morning. He was expecting to see a confused and disorientated young girl, unable to recognise her own mother and not responding to external stimulation. Instead, Anna was grumpy, clearly not willing to speak to him and treating him with disdain when he asked her (apparently) stupid questions about the colour of her cup. He must have wondered why he was called out! Although her temperature was still high, all other clinical signs were good and so it was decided to wait until today for her MRI and lumbar puncture.

She had to fast from 3am this morning and was finally taken for her MRI at 12.30 pm. Since she was going under a general anaesthetic, we had a list of other procedures added in, just because it is easier to get them done while she is asleep – changing the gripper in her port a cath (involves ‘plugging’ a needle into the disc under her skin), removing and replacing her ng tube in her nostril and doing a lumbar puncture. She was sleepy but fine afterwards, wanting crisps and milk.

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Bloods have been taken, samples tested for everything, she has been examined and discussed but nothing is showing up as the cause of this episode. The MRI scan show nothing unusual. The most likely cause seems to be a viral infection but it may well be that we don’t ever find out what really happened.

All the weekday staff were coming back in this morning and hearing about it so we had lots of people asking how we were. It seems almost unreal that she can have been so unwell and yet recovered so quickly.

We have no idea when Anna might be discharged. Its only possible to manage being in here and having some kind of normal(!) family life because of all your help – looking after Nathan when I’m in the hospital, looking after Anna when I need to be with Nathan, and constant messages of support. Thank you to everyone helping with this – you are all doing an amazing job.

We are also still in partial isolation because of her rsv. But we are through the worst of it. All prayers were answered. We are truly grateful.

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