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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Home for 24 hours

20140204-090522.jpgAnna’s blood cultures from last Thursday showed that she had a bacterial infection – staff epidermidis. It’s a common infection, found on everybody’s skin, but only causes a problem in those people who are immunocompromised i.e. Anna. She’s had it before a couple of times.

She was put on both IV antibiotics and oral antibiotics and we were in sick kids until Sunday. She seemed well enough in herself for us to be allowed home, on the basis that we would return every morning for IV antibiotics.

We came on Monday morning for her antibiotics. Anna was on good form, although also had a cough and cold developing. She was nauseous as usual. She went to school but only managed about an hour before she started to feel unwell again. She came home, went to bed, slept all afternoon and then her temperature spiked up over 38° at about 9 o’clock in the evening.

So we headed into sick kids a&e department where Anna had bloods taken and was checked over. By midnight they decided she was probably well enough to go home but gave us the option of staying in since it was so late. Anna wanted to stay in so we are still here this morning but hopefully heading home very soon. Neither if us are feeling very pleased to be back here so soon.

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3 smiles

20130615-135128.jpgAnna has been causing some concern.

On Thursday afternoon, she was increasingly agitated. We thought it might be she was in more pain but yesterday morning she appeared very drowsy and slightly disorientated. Aunt Clare was with her and immediately alerted the staff. This triggered memories of her previous significant episodes (i.e. life-threatening) and so there was a fast response from medical stuff.

Tests quickly showed that her haemoglobin had dropped to 65. We would normally expect it to be over 120, Anna’s often sits somewhere near a hundred and if it goes below 80 she would normally have a transfusion. It probably explained why she was so sleepy and so she had a blood transfusion yesterday afternoon.

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Her liver function was slightly off at the beginning of the week and tests yesterday showed her blood clotting was not right. Her body is also creating a chemical which shows that there is Inflammation in the body – ferritin. She normally has her obs (blood pressure and temperature) done every four hours but after appearing slightly confused yesterday morning she was on 2 hour obs including neurological checks all day and overnight. Nobody was taking any chances this time.

Blood cultures have confirmed that she has a bacterial infection – staph epidermidis. She’s had this before, it’s a common infection found on most people but with somebody with a port it can cause complications. She is now on two IV antibiotics – one to specifically treat the staph epidermidis and another type which treats a wide range of infections (‘Domestos’ antibiotic). This infection is unlikely to have caused her liver and blood problems but could become a concern if it gets worse.

Her skin is still red, angry, crusting and peeling off, as it has been the most of the week. It seems more likely now that the antifungal drug, voriconazole, has been the cause of the problem. It has made her skin extremely sensitive and the hot sunshine we’ve had over the last 3 to 4 weeks has meant that her skin has reacted in this way. She is in a lot of pain but her temperature is normal (the one good sign!). She has been extremely brave today, having her face cleaned, which was very, very painful.
It’s also important that her bowels are working properly and that she isn’t being sick so she’s on regular laxatives and anti emetics. Her u and e (urea and electrolyte) are being closely monitored and due to low potassium she is on IV fluids with added potassium.

20130615-185852.jpgShe improved over the day, had a relatively good night and is much more alert this morning (although she is very, very, very grumpy!). Hardly surprising, given the amount of pain she must be in, despite frequent pain relief.

Before Thursday afternoon, when she seemed to deteriorate slightly, it was thought we might get home on Friday. But the way she has been since then means that we will certainly not be going home until she is much improved.

We are very lucky to be here in sick kids where they have such amazing staff. The doctors are looking closely at all of her previous significant episodes, trying to establish any kind of pattern. What seems to be emerging as a possibility is that whenever Anna has any kind of trauma (infection or in this case her skin), her body responds in a similar way. Her liver function drops, red blood count falls dramatically, the inflammation marker in her body rises and, in previous episodes, her blood sugar has plummeted. This time It seems either it’s been caught earlier or the trauma is not so bad. And it means in future we will all be better prepared to deal with these kinds of episodes.

Anna has undoubtedly had one of her more difficult weeks but she has managed to smile three times – once with mark the play volunteer, once with the clown doctors and once with Stevie the clown.

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