Final day of treatment

Today 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

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.

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.

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.

Cause for concern

Anna’s condition has caused a lot of concern over the past 24 hours.

She was admitted last week with rsv, a relatively common but unpleasant cough and cold virus which can have serious symptoms even in otherwise healthy children. Anna’s symptoms are at the severe end of the scale since being admitted last Saturday.

However, her condition deteriorated yesterday afternoon and overnight.

Yesterday, she had a liquid feed going in to her nose through the ng tube in her nose as she was eating almost nothing. It was making her sick so she was having anti sickness medicine as well.

She had blood and electrolate fluids going intravenously through her port-a-cath as her haemoglobin counts dropped down to 71 (they transfuse below 80) and her fluid intake was extremely low.

She had a monitor strapped to her toe to measure her oxygen levels and, because the oxygen is low, she had small tubes up her nose giving her additional oxygen.

It’s not usual to see her with so many tubes and wires.

As the afternoon went on, it became impossible to settle her. She started behaving in a unusual manner, repeating things over and over again, getting her words confused and unable to sleep.

By early evening, it was clear that Anna was very disoriented and confused so the registrar was called. Once he arrived and examined Anna, the consultant on call was contacted at home and asked to come in. By the time she arrived late evening, Anna’s condition had worsened. The radiographer on call was brought in from home for Anna to have a CT scan and her chest was x rayed. Various discussions took place between oncology, neurology and other consultants and it was agreed that the CT scan showed nothing critical (such as a bleed on the brain) and that she would have an MRI on Monday, and possibly a lumbar puncture.

The consultant discussed moving Anna up to the high dependency unit but instead, around midnight, she was moved into a cubicle next to the nurses station here on ward 2, and put on half hourly observations.

The nurses showed me how to use the emergency button in the cubicle. They’ve never done that before.

The evening shift registrars came down to assess Anna around 1am and around then she really started to worry us all. She kept asking for me over and over again although I was right in front of her. She didn’t seem to be seeing anything, although her eyes are working.

The medical staff don’t really know what the problem is and are trying to eliminate possible causes. She is on 3 different intravenous antibiotics to try and cover as many infections as possible. She has an oxygen mask next to her face to maintain oxygen levels. The nursing staff, registrars, consultant on call and HDU were all on alert, waiting to see what happened through the night. There was a ‘low threshold’ for moving her to HDU.

She finally fell asleep at around 2.00am, with me on the chair next to her. I was scared to sleep in case her condition worsened but eventually dozed on her bed. Both she and I were woken at every set of obs (blood pressure, temperature and eye response checked). And at various points in the night she has slept on my lap. Emotionally and physically, I’m exhausted. She will probably go for an MRI and lumbar puncture today, rather than waiting for Monday.

This morning, she is currently fast asleep, her temperature is back down and she behaved ‘appropriately’ (medical term!) when she woke and asked for a drink. She is more comfortable and although there is still clearly a cause for concern, I’m not seeing the same urgency in the medical staff response. Thank goodness. Investigations will continue and I’ll update you once we know more.