Strawberries and Kandinsky

What else do you do with blue rubber gloves?

Having signed off the last blog, I packed my bag and the following morning swapped with Donella and stayed with Tabby in her side room in ward 3 at the Sick kids for the next 4 days. I have to say it was really nice spending time with her – playing games, watching films, painting and drawing – without distractions like work. Whatsmore I didn’t spill or drop a bedpan all week!

It was not easy to get a full night’s sleep. Tabby has her temperature, pulse and blood pressure checked regularly. Her infusion pump of the anti-viral medicine “Acyclovir” and iv fluid drip are constantly adjusted and re-charged with the pump often alarming if there is a blockage or a bubble in the system. Tabby was obviously  far more accustomed to it than I and seemed to sleep through all of this. As ever the staff of ward 3 were wonderful .

Tabby was such a good wee patient – effectively isolated in her room and being “barrier nursed” because of her infectious shingles. This meant she stayed in her room for 9 consecutive days. I don’t think she ever complained. I am happy to say that things have moved on since the days of the notorious isolation ward “toast diet”:

Patient: “Nurse, I’ve had toast for breakfast, beans on toast for lunch and egg on toast for supper. Why do I get so much toast every day?”

Nurse: “Because that’s all we can slide under the door!”

I was able to creep out in the evenings for some fresh air – at the “Earl of Marchmont”. Very therapeutic and a chance to reflect on the day's events!  Tabby was finally allowed home on Tuesday now taking her acyclovir as a tablet. Because of these unexpected events, yet again, her chemotherapy regime has been delayed.

"I can even wear it"

Tabby fell asleep in the car on the way home. Then, having arrived home burst into tears. Her tears, however were short lived thanks to a special present waiting for her. Stuart and Susan from Cheshire sent Tabby her very own Candy-Floss Machine. It is great. Tabby and Ewan have used it nearly every night since it arrived. There is, however, definitely a knack to it. Most evenings we have clouds of pink candy floss wafting across the kitchen.

On Friday we became tourists. Donella, Tabby and I went on an open top bus  tour of Edinburgh. This was the only afternoon of warm summer weather we have had for a while. It was good fun, something we had been meaning to do with Tabby for ages. To complete the tourist day we then went to the National Gallery and (at Tabby’s request) went round the “Van Gogh to Kandinsky” exhibition. Tabby had been learning about  Kandinsky at school and thought it was pretty cool to see the real thing! We then had Afternoon tea in the Gallery restaurant - a fine day out.

Discussing symbolist landscape painting in Europe 1880-1910

After everything that has gone on over the last few weeks – including 9 days bed rest, Tabby told us that following an afternoon of playing with her  friend Danielle, her legs were really quite tired and sore. On Friday, in Prince’s Street gardens she tried to run to chase Donella. She looked like she had just run a marathon – which I suppose is what she is doing every week.

Yesterday, Olivia and Ewan took Tabby to Craigie, Farm nearby, to go Stawberry picking. Despite the picture, they did come home with an awful lot of strawberries. They all made strawberry cup-cakes. I could not say who’s were the best.

Tomorrow is a new week. Blood tests on Monday, intrathecal methotrexate under G.A and cylcophosphamide infusion on Wednesday, daily infusions of cytarabine Thursday to Sunday. Hopefully we will be back on course to finish off “Delayed Intensification no.1” as soon as possible.

I am now trying to get back into training for the Glasgow to Edinburgh Cycle ride in September which I am doing for our local charity “Its Good 2 Give”.  By the next post, I hope to have set up a sponsorship website (should you wish to contribute). In the meantime I’ll get back onto the turbo-trainer although watching repeats of “Inspector Morse” at the same time may not have a major effect on increasing my aerobic capacity.

Thanks for reading,

The Lawsons

Shingles and Spells

It has certainly been a hectic two weeks since the last blog update. You will remember that Tabby had been a little under the weather but seemed to be getting back to her old self. Two Saturdays ago, friends, Juliet and Sean hosted a Wimbledon themed charity afternoon tea. Loads of wonderful cakes and sandwiches and games and puzzles to play. Great fun in aid of “Its Good 2 Give” and “Pancreatic Cancer Research Fund”. Lots of money raised and still counting.

"How many tennis balls in the box?"

That evening, Donella and I had been invited out to dinner. Tabby had earlier complained of a sore ear. Before we left we checked her temperature - 38.6 C . Cancel dinner (5 minutes notice – sorry Mark and Kelda!) and off to the “Sick Kids”. In A&E until 10pm then back to wd 2. It is testament to the staff of Wd 2 at the “Sick Kids” that Tabby is never obviously upset at being re-admitted to the ward – old friends, great nurses and respite from those bumbling amateurs Mum and Dad. As ever, Donella stayed in Hospital with Tabby.  Ewan and Olivia sadly are never impressed with my home cooking.

Ewan with a day's supply of chicken nuggets

During Tabby’s hospital stay, the hospital radio station – “Radio Lollipop” held a competition for the best spell in “Sick Kids Magic Week”.  Given that Tabby has not yet relinquished her two loose front teeth, we concocted the “Loose Tooth in ma Mooth” spell and sent it in.  More later. Tabby had high dose iv antibiotics for three days then home on tablets. Oh well!  We had expected Tabby to be vulnerable to infections resulting in admission such as this to hospital from time to time. This was the first time after six months of chemo. Because of this episode her next round of chemo was postponed.

When Tabby returned home we noted she had a couple of red patches on her foot – a bit sensitive but not looking like an infection. Late on Saturday night (4days ago) the red patch developed a blistered “vesicular” appearance. Even an Orthopaedic surgeon can recognise shingles! Sunday morning  and we are back to A&E at the ”Sick Kids”. By this time not only were the lesions very painful and sensitive but she also had lesions on her knee and thigh. With a contagious condition Tabby was not admitted to Ward 2 with all those immuno-compromised children.

We are now in Ward 3 . The bad news is she is in a side room and not allowed out until the lesions have healed. The good news is that for the first time we can get mobile phone reception! Tabby is now on high dose iv Acyclovir through her “Wiggly”. This can be a bit rough on her kidneys so she also has a lot of iv fluids as well, which means a pee every hour or so – or so it seems. Her neutrophil white cell count was rock-bottom and probably  explains the onset of Shingles.

Last night he people from Radio Lollipop came up to ward 3 and told us that Tabby had won the “Spell” prize. They gave her a certificate and a  balloon craft game and read out her spell over the hospital radio.  She even had a request played over the radio - not that I had ever heard of the song she asked for. Tabby was absolutely delighted.

As you will see our first 2 weeks of school holidays has really not gone as we had anticipated. Despite 2 hospital admissions and the pain of shingles, Tabby’s mood has never faltered. Funny, inquisitive, cheeky and verging on the manic – she has really kept us going. Tomorrow heralds a change of plan. Up until now, Donella has stayed in hospital at night with Tabby – sleeping on a camp bed in her room.  I guess it’s my turn now. After I finish writing this, I am off to pack my bag - lap-top, videos for Tabby and me, fruit, sweets and sensible pyjamas. I hope I don't snore too loudly.  I may have the odd stroll to the “Earl of Marchmont” if all goes well – simply for a breath of fresh air of course.

Yet more trivial pursuits

 As ever, thank you all so much for reading this blog and a special thanks to everyone for their good wishes and support.  

 The Lawsons