anna's blog

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

First week of school

Anna has had an exciting, busy but also traumatic first week of school.

She’s managed to stay in school for the first two days, successfully used both the hoist and toilet (a major achievement which required some serious bribery!), learnt ‘0’ and ‘a’ and played with her friends. We have travelled together in the school taxi with Anna in her manual wheelchair (once she is back in her snapdragon and the school taxi has the necessary adaptations, she and Nathan should be able to travel together every morning and afternoon in the school taxi).

However, she has been sore and uncomfortable since both legs are now in a cast. She’s had to have a long nap each of the first two days, she has struggled to eat and drink both in school and at home and feels nauseous most of the time (she carries a sick bowl with her everywhere she goes). Her NG tube came out last week when she was being sick, so we weren’t able to top up her fluids and feed in the normal way i.e. giving her water and overnight feed through a tube. She has needed to go straight to bed when she has come home.

Day three wasn’t successful. She went to school in the morning, I went back down around 9:30 AM to give her some morphine for the pain and finally brought her home around 10:30 AM. I rescheduled her appointment for her ingrowing toenails to be dealt with because the podiatrist can’t get in under the cast (and she is so sore already) and after discussion with the hospital about Wednesdays chemotherapy clinic visit, rescheduled it to Friday when she already has a visit to the fracture clinic so we only needed to go in to sick kids one day this week.

The community nurse came out in the afternoon to put a new NG tube in so we were at least able to give Anna fluids and some liquid feed.

On Friday morning, we headed in to sick kids. We started in ward 2 where she had her gripper put in and bloods taken. After that we headed down to the fracture clinic where she had an X-ray, saw the doctor twice and then had the cast on her right leg removed. We then went back up to ward 2 to check her blood results, and hopefully have her vincristin (Chemotherapy) after which we would be able to go home.

Unfortunately, that’s not quite what happened. Her haemoglobin is low (88), which probably explains the extreme tiredness she has had this week. Her blood isn’t clotting as well as it should be and her liver function is not good. It’s similar to how she has been at other times after either having an infection or suffering a trauma. She was immediately admitted and will stay in initially for 24 to 48 hours for observation and have a blood transfusion today. We hope that we have caught it early and that her condition doesn’t deteriorate in the worrying way seen in the past. Apart from the pain in her legs and being very tired, she is in good spirits. She was calm and settled when I left her last night.

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So rather than taking her home yesterday afternoon, I had to put plans into place for Nathan to be looked after for the afternoon (no school here on a Friday afternoon), get Anna settled on the ward and then drive back home to get Nathan and take him back into the hospital. The nurses and music therapist looked after Anna while I was away. Peter was going to stay overnight with Anna, so I waited at the hospital while he drove home and back to get his overnight bag. Both my car and phone turned out to have flat batteries, which delayed me slightly, but I’m impressed at the speed of the service offered by the AA. They arrived to recharge the battery within about 20 minutes.

Nathan and I slept at home. I’ll take him to his tae kwon do this morning and then we will head back into the hospital and I’ll stay in tonight.

Both Anna and I have been looking forward to her going to school for a long time. I’m just so grateful that she made it in on her first day, even though the rest of the week has been a bit difficult.

I don’t think I have felt as emotionally and physically exhausted and drained for a long time. Next week must surely be better.

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First day at school.

We made it.

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A great holiday… and now off to school

It’s been a great summer holiday –
Nathan has enjoyed his football coaching classes and outdoor activity days at almondell country Park. Anna has enjoyed Barnados summer club, days out with me and other family, had hospital stays, fractures and various other medical interventions.

Both have loved going away to Rachel house children’s hospice (an amazing place!), up north with granny and dad and, for the last week of the holidays, to (the wonderful) Crieff hydro with auntie Mary and her two girls (and Courtnay, Neil and the children). Thanks all for being there – it made it even more special.

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My plan over the summer was to involve Nathan in as many energetic activities as possible, both to use up his never ending supply of energy and also ensure he was doing the things he really enjoyed as i feel he does sometimes miss out because of Anna’s needs. At the same time, I wanted to allow Anna to be as normal a little girl as possible, and do the same things as other 5 yr olds .

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It’s generally worked out that way – although it seems impossible to tire Nathan out! Anna particularly enjoyed Crieff hydro, where she was able to go into the children’s club along with all the other children (up to 6 hours a day!), eat high tea with everybody, dance at the disco and laugh along with the magician.
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However , it’s also been very, very hard work. Anna’s day time care needs over that period of time has been absolutely exhausting. Even Crieff Hydro, with 6 hours a day in the children’s club, was exhausting as I still had all the overnight care. Anna continues to wake several times every night asking to be turned on to her side or back, usually around 1 o’clock 3 o’clock 5 o’clock 7 o’clock. At the moment she’s tending to be sick both in the night and as soon as she wakes up. And Anna going to the toilet is always a huge effort for all involved – maybe more on this in a future post.

Yet we finally made it to the end of the holidays and Anna starts P1 tomorrow. It feels like a huge event, for all kinds of reasons. I have the same feelings as all the other P1 mums and dads but also I’m very aware that Anna at times seemed unlikely to make it this far.

So we are ready – or at least nearly ready – even though there have been several hiccups along the way. Her uniforms has been bought (after trying on numerous outfits due to her swollen stomach not fitting many things), her school bag is packed, the travel plans are falling into place (taxi company are in the process of ordering and installing the snapdragon lock down system for the car, and Anna’s motability vehicle is on its way), the medical room has been converted, a hoist has been installed and tested and a new P7 buddy chosen.

After a quick trip to A&E this afternoon, Anna now has matching casts on her legs for her first day at school. The left leg cast is on as a precaution after an accident today. X-rays showed no fracture but it will be reviewed on Friday at fracture clinic when the other cast is taken off, which is on following a fractured femur some five weeks ago.

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Both Anna and Nathan are upstairs asleep. Tomorrow is going to be a big day – for all of us.

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Getting ready for our holiday

We are planning to go to Crieff hydro next week with auntie mary, Katrine and lotte.

Unfortunately, Anna’s blood counts this week showed a low red cell count. So, her pre holiday preparation includes a blood transfusion.

Just nearing the end of the 3 hour transfusion at sick kids…

Luckily her neutrophil count is fine so she is allowed into children’s club – 6 hours every day. Bliss – for her and me!!!

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