anna's blog

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

Anna is home

3 days of ‘aggressive physiotherapy’ (their words not mine) has done the job. The X-ray on Thursday showed that Anna’s lungs had cleared significantly and so today she has been allowed home. I’ve to continue with a physiotherapy plan at home (cough assist, huffs and bubbles) and she remains on antibiotics. She has once again come through a ‘significant event’. Thank you as always to everyone who has helped Xxxx

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Good news, bad news…

The good news is that over the weekend Anna’s oxygen levels improved. She was able to come off additional oxygen on Sunday night and her respiratory rate was much better. On Monday morning she was much brighter, obviously feeling a lot better. When the doctors reviewed her in the morning it was suggested she may only need another night or two in hospital. However, after a lung x-ray later in the day the news was not so good. Her lungs were still showing a lot of infection and also what appeared to be a mucus block in the upper part of her left lung causing a section of lung to have collapsed as there was no air getting through the mucus block. All plans to come home abruptly stopped. Nebulisers and nasal suction became a part of the twice daily physiotherapy sessions. The plan is now to have another X-ray on Thursday and see how things are.

Apart from the nasal suction, which she hates, Anna is tolerating it all pretty well. The hospital teacher is coming each day and Anna has been visited by the Clown Doctors, tricky Ricky the magician, the music man and a dance group. She even let me take some pictures!

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And whooping cough too…

Anna has whooping cough. The combination of that with the pneumonia means she is feeling really unwell and needing a lot of respiratory support.

I’ve learnt a lot about whooping cough, or pertussis, in the last 24 hours. Although the vaccine is given to all children as part of their early year immunisation programme, the effect of the vaccine wears off over time and so children and adults can still get it. So despite a full vaccination programme there are still a significant number of cases of whooping cough in the community, but generally not diagnosed as it can present in a similar way to a normal cough. Anna has been diagnosed because she has been tested in hospital but children aren’t routinely tested if they see their gp. The ‘whoop’ is often heard in babies but not necessarily in children or adults so what seems like a long lingering cough could actually be whooping cough.

It’s a notifiable disease so once public health are made aware of a case letters will go out from school.

Anna is well enough to be sitting up in bed or wheelchair during the day but the constant coughing and nausea means she just feels rubbish. And not surprisingly, bored and grumpy.

Her oral antibiotic, clarithromycin, makes her feel sick but her anti-emetic medication, ondanstron, makes her feel sick when she takes it as a liquid so one of the nurses sourced it in a tablet form. She remains on IV antibiotics as well.

Her oxygen levels are still low, especially overnight, so she is having additional oxygen. Her lungs continue to be full of infection and she is having physio input once or twice a day. I’ve taken in our cough assist machine to use in hospital and today for the first time they used suction through her nose to try and remove some of the mucus. Poor Anna.

The only plus side is that whooping cough means she has to be in isolation so she is in a room rather than out on the ward so she now has a tv. It’s a small comfort in the scale of things.

I think Anna’s hospital stay might be longer than we thought.

X

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24 hours later…

Anna has steadily improved and is much better, although still unwell.

Her oxygen saturation levels, which were the main cause of concern last night, improved steadily through the night. She had to have a face mask on constantly when I finally went to bed. The oxygen flow was initially 15 litres, by morning it had reduced to 6 litres and then to 0.5 litres. Her temperature was down to a more acceptable level, as was her heart rate.

There was still a concern that there might be fluid on her lungs which would require a drain (and general anaesthetic) so she was nil by mouth all morning. She had an ultrasound around 11am and the radiographer confirmed there was no fluid. Just lots and lots of infection.

By mid morning she was declared fit to leave HDU and go into a normal ward.

Tonight she is settled and ready to go to sleep. She is still on 2 different antibiotics, anti emetics and pain relief. She has watched 2 dvds, several hours of Netflix and had her nails painted by one of the nurses.

I think she will remain in hospital until early next week but she is clearly improving and getting better.

X

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Pneumonia. Again.

It’s 1.30am and I’ve left Anna in the care of the staff in the high dependancy unit at sick kids to try and get a few hours sleep up in PJ’s loft (parent’s accommodation).

Our arrival at A&E this evening was sudden and unexpected. Anna has had a bad cough for over 3 weeks and there have been ups and downs but she seemed over the worst and was in really good spirits when she left for school this morning. Over the 3 weeks, she has been on antibiotics, used her cough assist on a regular basis and tried hard to clear the phlegm that has built up in her lungs. However it just hasn’t been enough. She felt unwell at school this afternoon and developed a temperature of 39 degrees soon after arriving home. She was extremely nauseous (due to all the mucus and phlegm going into her stomach) and not wanting to eat or drink. She wanted to go to bed straightaway and didn’t ask for her electronic device. Both actions are completely out of character and enough to cause concern. I called the GP, who arrived out at the house 20 mins later and within the hour we were on our way to sick kids. We were seen fairly quickly and sent for a lung X-ray. Things speeded up after that (supporting my new theory that the worse things are the quicker the nhs response).

Doctor’s descriptions of Anna tonight have included ‘a very sick child’, ‘very poorly’, ‘really very unwell’. We’ve spent most of the evening in the A&E emergency room, with constant doctor/consultant presence, as Anna has needed significant oxygen and various monitorings since arriving early this evening.

Tonight’s X-ray shows the left hand side of her lungs almost completely infected with pneumonia. The out of hours physiotherapist has been called in to try and help clear the build up in her lungs and the out of hours radiographer was called in to do a lung ultrasound. She has got a cannula in her hand and had bloods taken and tested.

She has received 2 different IV antibiotics, an anti emetic and is currently receiving fluids. She is taped up with both heart and oxygen monitors which are both giving readings causing some concern – low oxygen saturation levels, high heart rate and high respiratory rate. She has been nil by mouth since arriving as it looked like the fluid build up on the lungs might require a drain, and presumably a general anaesthetic. However, the ultrasound results show little fluid but a lot of infection

Everybody as always has been wonderful with her but sometimes explaining to the parent what is going on during a ‘significant event’ is the last thing to happen. It was clear from the fact that we were in the main emergency room that it was serious but I’ve had to ask for information, specifically ‘is this treatable?’ and later, ‘is she improving ‘. Without these questions I don’t know how worried I need to be (the answer was yes to both). She has certainly caused a lot of concern tonight but all the signs seem to show that she will recover.

Anna’s own comment is ‘this has been a really bad day’. I agree completely. X

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Happy Mother’s Day

Happy Mother’s Day

https://mythyroidcancer778732997.wordpress.com/2018/03/11/happy-mothers-day/
— Read on mythyroidcancer778732997.wordpress.com/2018/03/11/happy-mothers-day/

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Anna’s care

Anna’s care

https://mythyroidcancer778732997.wordpress.com/2018/02/25/annas-care/
— Read on mythyroidcancer778732997.wordpress.com/2018/02/25/annas-care/

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Outdoor activities with The Calvert Trust @Keilder Water

Nathan, Anna and I have had an incredible week at keilder water as part of the No Limits sports club group staying with The Calvert Trust. The pictures speak for themselves. Thanks to everyone for making it happen. X

 

 

 

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Appointments and operations

We have more than our fair share of planned medical appointments – oncology, respiratory, endinocrology, spinal, neurology,  physiotherapy, occupational therapy and orthotics as well as all the other school and social care meetings. These range from monthly to annual and everything in between and so there is rarely a week that goes by without some kind of appointment. There are also frequent unplanned events around Anna’s care needs.  There is not much I can do about this. I just have to plan our lives as best as I can and make sure that I’m always available.

Anna has had three appointments in the last two weeks, all worth a mention.

The first was her 6 month check up with the respiratory team at Edinburgh Sick Kids. Anna’s muscles are weak due to SMA. Not just the muscles that would allow her to walk or make more of use her arms but internal muscles as well. When she gets a cough she doesn’t have the strength to clear her lungs so phlegm or mucus build up. That leads to two main problems. Firstly, the build up of phlegm/mucus creates an ideal breeding ground for bacteria, leading to infection such as pneumonia and then hospitalisation. Or secondly she manages to cough it up just far enough to fall back into her stomach, leading to severe nausea, dehydration and again, hospitalisation. Although she finally has a cough assist machine which helps clear her lungs, I’m still  paranoid about letting her get near anyone with a cold or cough. It’s not a big issue for most people but for Anna it can be serious. Maintaining good respiratory health is essential for Anna and anyone with SMA. 

Anna’s second appointment was her annual bone density scan. A combination of being non weight bearing and receiving steroid treatment for leukaemia meant that her bone strength had deteriorated to the point that her bones were were beginning to break when she simply bent an arm.  Because of that, her leukaemia treatment was stopped early as the consequences of such serious bone fragility were too severe.  She had bone strengthening treatment for over a year and her bone strength now sits just within the normal range for a child of her age.  We go to the Medical Physics department at the western general hospital in Edinburgh for an annual scan (she lies under the machine in the picture) to monitor ongoing strength. Obviously it’s important that her bones are as strong as possible for lots of reasons. 

Anna’s third appointment was for surgery. We’ve been waiting almost a year to get her portocath (click for more information) removed, due to illness on either her or the surgeon’s part or higher priority patients bumping her off the lists. The first procedure she had done after she was diagnosed with Acute lymphoblastic leukaemia (ALL) was the insertion of the portocath. I remember clearly the trauma of trying to get a cannula in Anna’s hand in those immediate hours following diagnosis. She was so dangerously ill at that point, and her red blood cells down to next to nothing,  and they couldn’t find a point to get it in. We were all traumatised. Having a  portocath made it easier to give her the hundreds of procedures needed  such as blood or platelet transfusions, steroids, chemotherapy, antibiotics, fluids, anaesthetics, etc. Anna’s general anaesthetic/surgery was scheduled for Tuesday afternoon so she had to fast from 7.30am. She had an early breakfast at 7am of porridge and then nothing until after surgery around 6pm. It all went well and we were able to get some painful dental work done at the same time while she was anaesthetised. 

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5 years on

My beautiful, gorgeous girl is now 8 yrs old. 5 years ago today she was diagnosed with Childhood acute lymphoblastic leukemia. After 2 years of intensive treatment  she remains in remission.

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Our lives had already been changed forever with the diagnosis of Spinal Muscular atrophy only a few months before the leukaemia diagnosis, but now we are through the intense and traumatic period of critical illness we focus on allowing Anna to be the best she can both now and in the future. She is just like many other 8 yr old girls. She loves arts and crafts, singing dancing and (still) loves anything pink and sparkly. She has a full and busy life with school, after school activities, play dates and holidays. She expects to be able to do everything and that’s what we try and make happen. However we face challenges on a daily basis in terms of the level of care and support needed as well as ensuring accessibility in its broadest sense as we go about our lives. Anna still doesn’t sleep through the night, needing help to turn over or move her covers, which means I live in a state of constant exhaustion. She remains under the care of 6 consultants across 3 hospitals and 2 countries. She needs help with every single aspect of her life both day and night.

I’ve struggled to blog in the last year or two (mostly because I’m just so tired all the time)  but I know there are lots of you who want to know how Anna is doing. We still have a story to tell – not so much now about leukaemia but more about how we deal with disability and ensure accessibility in every aspect of Anna’s life. I’m going to do my very best to continue the blog to tell you that story.

It’s probably clear to even those who don’t know Anna personally that she is a strong willed, assertive and (at times) confident young girl. She places no restrictions on herself and expects the same from  others. I am very lucky to have her. x

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