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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Second fracture

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Anna fractured her femur again last Friday.

I was away at my Pampered Chef conference when it happened but both granny and dad looked after Anna, with Auntie Clare taking charge of Nathan. It seems that her bones are so weak that even a bit of pressure can cause a fracture. At the recent meeting with the endocrinology team, ongoing treatment was discussed and it was suggested that we hold off unless she had another fracture. So, having now had another fracture, treatment looks likely to start at some point soon.

The whole week has been quite a juggling act as Nathan is on school holidays. As always, it’s been with help and support from a whole number of people. So huge thanks to everyone that has been involved in looking after Nathan. And of course thanks to everybody has helped me both in the hospital and at home, trying to make sure that somebody is with both Anna and Nathan when necessary. Both granny and auntie clare have spent quite a bit of time at the hospital this week, which has been a huge help.

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It has been increasingly difficult moving and lifting Anna in the house and there has been an ongoing discussion about manual handling over the last couple of months, especially as she prepares to start school. It had been agreed that a hoist be put in place in the house as well as in school. Obviously that has become even more important as she has her leg in a full cast – hip to toe – so a number of people have been busy this week ensuring that the hoist will be in the house on Friday ready for our return home. It’s not been straightforward – there have been a few problems along the way – but once again people have gone to great lengths to make sure things work out for Anna. Thank you. We really appreciate it.

After Anna had her leg x rayed and put in a cast on Friday, she was admitted to the hospital (ward two was full so we came to ward four). Most children would have been sent home but it was felt important to monitor Anna, especially as after previous infections/fractions she has shown signs of poor liver function and associated concerns. This time there seemed to be no real problems. She did spike a temperature on Tuesday (it went over 38°C) but that seemed to resolve itself. Today, she has had her leg recast, with the knee slightly more bent and another x-ray.

Both Oncology and the surgical team have given the go-ahead to be discharged. I’ve had discussions with both the dietician and pharmacist. We are just waiting for medicines and I’m about to pack everything up in the car and head home. A hoist arrives at the house tomorrow and we’ll start practising. Hopefully it will make at least some things easier.

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Some smiles

Anna has been much, much better today.

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She is allowed out of isolation so we’ve been to the shop and chosen a magazine and even been out of the hospital to get a chocolate muffin from the deli.

Tuesday’s X-ray suggests her fracture is healing well.

There has been no vomiting, plenty poos and lots of eating and drinking.

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All the swabs, infection screenings, blood tests and urine/bowel samples have revealed no infection. There is still no real idea of what has been wrong – most likely an unidentified bug – but there is an underlying concern about the similarity of her symptoms to previous significant episodes (that seems to be the medical term for terrifying, life threatening incidents, of which we’ve had a few), in particular the low blood sugar level. So Anna will be referred to the metabolic team. I think she has already been discussed within the endocrinology team. I don’t think there can be many teams at edinburgh royal hospital for sick children who haven’t seen or discussed Anna. Certainly she is known to neurology, oncology, orthopaedics, respiratory, endocrinology and metabolics.

Tonight, she has had a lovely bubble bath and is sleeping soundly.

Despite trying hard not to, she smiled several times today.

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Still sick

Anna is still in sick kids and feeling thoroughly miserable. After being admitted through A&E on fri night, she was put on ward 4 (not the oncology ward) as the hospital was so busy. Peter stayed that night and then I took over yesterday. She was moved to ward 2, where we always feel much more comfortable as they know Anna so well (although we are spending so much time on other wards other staff are getting to know Anna!).

Her temp has been below 38 degrees for 24 hours. The pain from her fractured femur is being effectively managed by morphine and she seems more comfortable but she is still being sick. She is having intravenous fluids through her portacath, and continuing to have her daily chemotherapy dose of mercaptopurine, as well as voriconazole for the previous fungal infection. Her stomach is very bloated and has been for a while now. It could be constipation from the variety of drugs so she is having laxatives. She has started vitamin d supplement and will also now have omeprozole to counter any stomach acid problems.

All Anna can think about is her next meal. She has been asking what will be for tea since 10am.

Nathan had a lovely afternoon at Neil and Courtnay’s fundraising talent show (thanks everyone for a superb effort!!!) and was then picked up by Peter when he returned from the hospital. Nathan knows the routine when Anna is in hospital. He enjoys getting to choose a sandwich and drink from M&S and eat it in the Anna’s cubicle during handovers.

Weekends in the hospital are much easier to manage than weekdays, when Nathan has to be got to and from school as well as someone being in the hospital with Anna during the day. Hopefully this won’t be a long stay…

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One year on

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Anna’s leukaemia was diagnosed exactly one year ago.

I remember it clearly. Anna had been losing strength and mobility in her legs for a month or two. We were all puzzled as her Spinal Muscular Atrophy (diagnosed only 5 months earlier) should not have led to such a rapid deterioration. She had seemed increasingly tired and pale over a number of weeks, even months, and was complaining frequently of aching legs. All classic leukaemia symptoms, we now know. We just weren’t looking for another rare condition.

I had taken her to the doctor for a blood test earlier that day, and at teatime we got a call from him. He told us that the lab had just looked at Anna’s bloods and we were to take her straight to Edinburgh sick kids. I asked if she might become seriously ill if we didn’t hurry and he said she was already seriously ill. I also asked him if he thought we might have to stay overnight, and he said probably. Anna didn’t really leave that hospital for almost 6 weeks.

We went straight to A&E. Looking back, all the medical staff we met through the evening must have had a good idea of what we were about to be told. I think they were just checking results and getting ready to admit us to Ward 2, the oncology ward. Anna was clearly very ill by that point.

At around 11pm, Anna and I were taken up to the ward where, very gently, we were told she had leukaemia. I still get upset when I think about that night. Almost as bad as the diagnosis itself was having to phone family and friends to tell them the dreadful news.

One year on, Anna has spent around 3 months of the year as a hospital inpatient. I’ve lost count of how much time she has spent as an outpatient, or at clinic, or with the outreach team. We’ve spent Christmas on the ward, learnt about medical procedures, developed a range of new skills with ng tubes and feeding pumps and got to know the whole team who work so hard to make Anna and the other children better.

We’ve had terrifying ambulance rides, and times where we didn’t know if Anna would make it through.

Our family life has changed in ways we never imagined.

But we have also been overwhelmed by the help and support given to us. Not just friends and family, but from charities dedicated to helping people in our situation and also complete strangers. We have entered a whole new world of ill children and those who commit themselves to making life better for families in our situation. We have had to learn that it is ok to ask for help and that many people genuinely want to give it.

On a personal level, what matters to me has changed. Life is for living, enjoying and appreciating, with friends and family.We never know when it may be taken away from us or the ones we love. And I am constantly reminded that however bad things are, we are blessed to still have Anna with us. Not everyone we meet has been as fortunate.

Anna’s drug regime continues. She will still be on chemotherapy and steroids for the next year, plus antibiotics and anti fungals for even longer to protect against infections.

Tonight, Anna is probably better than she has been for many months. She goes back to nursery tomorrow. We are hoping to spend Christmas out of hospital and to lead as normal a life as possible.

As always, thank you to everyone.

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