Brave

Following the hiccups and stutters of the last few weeks, we now appear to be back on an even keel.  Although Tabby made an excellent recovery from her shingles, her blood count remained too low for her to resume her chemo – so another week’s delay.  We are now back on the “Delayed Intensification Regime” albeit more delayed than originally planned.  Another three weeks of this then we move onto “Maintenance Therapy”.

Tabby and Mischief the cat

The weekend before last,  we all took the train to Glasgow to meet  Donella’s  sister, Grace  with  John, Hannah and Andrew who had flown over from  Los Angeles to come to the Olympics.  It puts us to shame insomuch they have travelled 6,500 mile to see the games and we did not even manage the 300 miles or so from Edinburgh. Oh well, next time!?!?  Anyway, Grace works for Mattel ( The Barbie people) as Vice President of H.R and presented Tabby with a unique gift – “Ella”, Barbie’s friend who  has had chemotherapy and has no hair.  As you can imagine she does have an assortment of wigs and scarves. I believe it was produced at the request of the CEO of Mattel  in response to a friend’s situation.  It seems that Tabby’s “Ella” is the first one in the UK. These will be produced in greater numbers next year  but only available to charities and children in hospital. I think they both look great.

Tabby and Ella

We had a wonderful day in Glasgow.  Even the rain held off – almost.  We then got the train home and slept soundly until we got home.  Tabby always enjoys a train ride – as does her Dad

Bald on bald

 The Edinburgh Festival and the Fringe have now kicked off.  Donella took Tabby and her friend Poppy to see  “Mr Brown.... and his singing Tiger”. I think they enjoyed it.  Tabby is going to see some more shows over the next few days  with Poppy and Ruby.

On Sunday, Tabby and I were back at the “Sick Kids” for the 4^th consecutive day of Cytarabine injections. We had planned to go for a cycle afterwards but you will remember that the weather on Sunday was awful. Instead we went to the Disney shop! Sadly I could not find anything my size but Tabby found  pretty cool outfit - Princess Merida from "Brave". Next week we are going to watch “Brave” the new Disney film which is about a brave wee Scottish princess called Merida who did not want to conform – or behave like a princess.  Need I say more?  Tabby is even more brave than “Brave”.

Princess Tabitha

On Sunday 9^th September, a  team of us  will take part in the Glasgow – Edinburgh Cycle run to raise funds for our charity “Its good 2 give”. We are “Team Pedal for Paul”.  I have set up a fundraising website so that if anyone reading this blog would like to sponsor me for the ride. The link is:

http://uk.virginmoneygiving.com/GRAHAMLAWSON

Your donation will go to an extremely good cause – a charity that has helped us and hundreds of families like us to cope with childhood cancer.

I now have a month to grow my Bradley Wiggins sideburns.

As ever, thankyou for reading this blog,

The Lawsons

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

Candy-floss and Chemo

If you read the last blog, you will know that we were looking forward to seeing the musical “Oliver” at the Edinburgh Playhouse – if Tabitha was well enough.  As far as Tabby was concerned, not going was never an option. The show was absolutely stunning in every way. Even better was seeing Tabby sitting on the edge of her seat, loving every minute and singing every word with not a care in the world. One of our best days since this leukaemia was diagnosed.

"Let the show begin"

Apart from “Oliver”, the last three weeks have been a lot harder than than we anticipated. The return to Doxorubicin and Vincristine has seen off the last of Tabby’s hair and to all intents and purposes she has none left. The alternate weeks of high dose steroids have really had a profound effect on Tabby. Moody, miserable and irritable – not a law firm – but simply the effect the steroids have on her. Equally distressing is the fact that Tabby has complete insight into her behaviour both during and after each course of steroids and is aware of how despondent and frustrated she becomes. Similarly, when she stops the steroids, she rapidly resurfaces again as our usual bubbly and cheerful girl as if awakening from a really bad dream.

On Sunday, for example, we had toyed with the idea of going to the Highland Show. Tabby was  very keen, I was less so.  Knee deep mud and cow poo did not seem ideal for a girl with short welly boots few functioning white blood cells. It then became apparent that Tabby’s desire to go was not a love of things rural but simply the opportunity to buy candy-floss. We did not go but instead spent the morning trying to establish where one could buy candy-floss on a Sunday morning!  Tabby was inconsolable. The effects of steroids again.

Sadly, Tabby’s last week of primary 2 coincided with a week of steroids. She had a lovely time at Katie and Freya’s party last Sunday running around and playing. On Monday, however, she got to school but felt too tired and weary to stay and for the last 3 days has had a really sore back. As a result, poor Tabby missed all the end of term games and parties at the school. She was terribly upset and we did not really get the chance to thank her teacher, Mrs Krumins , for all her help over the last six months. Last night Tabby’s back was so sore we  ‘phoned ward 2 at the “Sick Kids”. I thought we may be making another unscheduled stay in Ward 2 but following their advice regarding alternative analgesia she seemed to settle and had a fair night’s sleep. These last three or four days have been particularly hard and for the first time in many weeks she simply looked so unwell and frail.

99.9% of the time, we manage to maintain a form of normality, going to school, seeing friends and family and enjoying days out – all largely buoyed up by Tabby’s irrepressible good humour.   When Tabby is down and sore and unwell, it can be very difficult to keep a lid on the “What if?” demons.  It doesn’t bear dwelling upon.  You have to give yourself a shake, give her a huge cuddle and remind yourself that in theory Tabby is in remission and she has all the factors which would  indicate a good prognosis and cure. The only reason I feel able to put these somewhat gloomy thoughts on the blog is that having had her last dose of this course steroids yesterday, Tabby’s back pain is settling and she has once again re-emerged from her steroid induced malaise and is back to her usual cheeky and animated self.

 How can I get rid of 2 loose front teeth?

We have another five weeks of this “Delayed intensification no.1” before moving onto  “Maintenance Cycles” – for the next eighty weeks!

Finally we would like to thank Mrs Krumins, Mrs Meakin and Mrs Ryecroft at Mary Erskine School for their wonderful kindness and support over the last 6 months.

As ever thankyou for reading the blog. We have lots of nice things coming up over the next week or so and promise to report these next time.

The Lawsons

"Consider Yourself"

At the last blog, Tabby had just completed her eight week regime of increasing doses of methotrexate. We were expecting a 2 week interlude before returning to the fray – the “Delayed Intensification no.1”.  Actually we got it wrong – there was no 2 week holiday and Tabby was straight back to the “Sick Kids” for  the next challenge.  This involves 8 different chemotherapy agents at various intervals over the next eight weeks. Again, the high dose steroids seem to have the most profound effects.  I was away in London with Ewan during the first week of June. We returned as Tabby finished her first  seven day course of steroids of this regime. For the first time in ages she looked genuinely tired, miserable and down.  Having not seen her for a week it was really a shock.

On Sunday she went to Sunday school and although she had a nice time was completely washed out for the rest of the day.  She just didn’t know what to do with herself.  Her favourite games and dvd’s held no appeal. Her steroids stopped (for the moment) on Monday and she has since returned to her normal cheerful self.  This evening Tabby stated that she slept so much last week “...because she couldn’t think what else to do!” The only upside of the steroids I can see is her appetite return and she has gained 1kg since the start of June.

Ewan and I were in London at the start of the month ostensibly for his work experience week although it did coincide with the Queen’s Diamond Jubilee. It was a good time to be in London. Back home, Tabby – or was it really the Queen? – celebrated the Diamond Jubilee in regal manner.

School this week has been a bit erratic due to  combination of  chemotherapy at the “Sick Kids” and  feeling off colour. We have had an “about –turn” on arriving at school, an unscheduled “come and get me” after an hour and one day off. Today was Tabby’s “Special Day” at school – a day where she is allowed to go to the front of the queues , she wears a special badge and classmates stand up and say nice things about her.  This is not a day to miss – although, as ever, she had to leave early for more chemotherapy this afternoon.

This weekend we are off to see the musical “Oliver” at the Playhouse. This is Tabby’s favourite musical. We have already seen a steroid induced “Food glorious food” this week and without doubt they do make her a bit “Ron Moody”! On Monday we go back to hospital where in the words of Fagan “We are reviewing, the situation....”.  

I have now run out of “Oliver” puns.

As ever, Thank you for reading this blog,

The Lawsons

Tabby 1 Escalating Capizzi 0

Three weeks since the last blog post. I must be slipping! As ever, a lot has happened since the last blog. Tabby had another two escalating doses of IV methotrexate with the usual side effects of tummy pain and complete loss of appetite but she has now completed the “Escalating Capizzi” regime. She tolerated all five cycles and did not need to go to be admitted to hospital. What a star – what a relief! Each week her weight has wobbled around that which the doctors would suggest NG feeding. This is naso-gastric feeding where a small tube is passed into her stomach via her nose so we can feed her liquidised food or supplements. Last week, eating her spaghetti, she asked what sort of food would go down the tube if she had one. Just spaghetti because that’s all that will fit - that and tomato soup.  

"Special Soup from Joy at Murrayfield"

We would all hate that and have handfuls of coins to put in her pockets next time she is weighed.  She is 4 days post last methotrexate injection and is just emerging from her “Can’t eat, won’t eat” phase. Hopefully her  weight will not have dropped any more and so we will avoid the NG tube.

Grannie and Grandpa visited us last week and Grandpa had his  **th birthday while they were here. We didn’t put all the candles on the cake as that would have been a significant fire risk! Anyway, Tabby enjoyed presenting the cake to Grandpa.

On Friday, Donella and I attended The Stewarts’ Melville Charity Fantoosh, with one of the Charities being “Its Good 2 Give”.  I was asked to say a few  words about Tabby and the charity.  With Donella’s words of encouragement – “Don’t go rambling on” – I gave a personal account of how “Its Good 2 Give” has helped us.  It’s a hard topic to talk about without spoiling everyone’s evening.  One colleague told me it was a passionate speech but that could have been the three glasses of champagne I consumed beforehand.

It was a super night and an awful lot of money was raised for the charities

You will have noticed that we had a flash of summer over the last week which has been great for us all. On Saturday we went swimming and on Sunday, Tabby was back to Sunday school. The rest of the weekend, Tabby has been out playing in the garden non-stop and yesterday she and the rest of her class p2K spent the day at the Botanical Gardens.  

Tabby now has a 2 week holiday from any more chemotherapy. Hooray! This should give her the chance to recover from the Capizzi duel. The next phase is labelled “ Delayed intensification no.1” Here we revisit all our old friends from the astronomer’s map – Cytarabine, Mercaptopurine and  Peg Asparaginase to name but a few.  We also kick off with 2 more weeks of appetite inducing steroids so I guess it will be back to Costa Coffee for the daily Ham and Cheese Paninis. 

Dancing with Mischief

At the risk of sounding like an old worn out record, we are constantly amazed at how resilient and chirpy Tabby has been throughout this time. Last year at the school sports, she won all her races even beating the boys. This week, at a practice event  she came rolling in at the back of the field.  Although irritated at the time, she knows she will be out at the front again soon!

 

Thanks for reading,

 

The Lawsons

Too busy to be poorly!

It has been a busy couple of weeks since Tabby’s Birthday with parties, school, chemo and the P2 Show. I will try to keep it brief!

Tabby’s birthday was 2 days after her IV methotrexate and as ever 2-3 days later she felt pretty down and flat and so for the rest of the week did not make school. By Sunday however she was feeling much brighter and for the first time since she was diagnosed with ALL we took her to Church and Sunday School. She had such a lovely, warm welcome from everyone. It was one of those things that restores a feeling of normality once more. You will see that for her birthday, Tabby got a battery powered "Quad Bike". It is rather slow. If she likes it and can go in straight lines, we may get her a sit-on lawn mower next year!

That weekend, Donella and I were invited to the Retiral Dinner of one of my senior Haematology colleagues. It was a very pleasant evening and I can only sympathise with the medical team of Wd2 at the “Sick Kids” who are looking after the Lawsons by day and then are faced with them on a night out! We were on our best behaviour.

I had a Birthday last Tuesday (still in my 40’s – just) so it was back to Pizza Express. Tabby is currently in Pizza mode so is happy to eat garlic doughballs and Pizza. We are just happy there is something she can face eating. There are many times when the poor thing feels genuinely hungry and so Donella will prepare whatever Tabby has requested only for her appetite to evaporate into thin air. It is so frustrating for them both. The protein and carbohydrate drinks are still described as “Yeuch!”

The following morning Tabby was back at the “Sick Kids” for blood tests. Donella was given the news by Dr Thomas that they had not been able to see any sign of leukaemia in Tabby’s most recent bone marrow test. She suggested that Tabby was in remission. I read Donella’s text between surgical cases that morning. I have to confess to a range of mixed emotions. Firstly, have I understood the message correctly? Secondly joy –and not a dry eye in the theatre scrub room followed by “How exactly was the bone marrow analysed?” We now know that the bone marrow biopsy was not tested in the molecular/DNA way as in the super sensitive MRD a few weeks ago but was examined by microscope which is obviously less sensitive. Whatever! – it is still good news and shows we are heading in the right direction. Typical Doctor’s response I guess, being over analytical.

                                                  One of the King's Men

The next morning Tabby was back to “Sick Kids” for her ever increasing dose of IV Methotrexate then back to school in the afternoon because the next day (Friday) was a big day – the P2 Show. On Friday morning Tabby went to school for the dress rehearsal and in the afternoon was back at the “Sick Kids” for her intramuscular injection of asparaginase (the sore one). The show must go on. In time honoured tradition Tabby was back at school that evening to take part in “Humpty Dumpty-was he pushed or did he fall?”. She sang and danced her heart out as one of the King's Men. You could not seriously imagine that she was loaded up with anti sickness tablets, anti heartburn tablets and in the previous 48 hours had received enough chemotherapy to flatten an ox. I really do not know how she does it.

                                                  Ruby and Tabby's Birthday

There was no let up on Saturday - Time to Party! Tabby shared her 7^th Birthday Party with her friend Ruby at “Kiss the Fish” in Edinburgh. Along with friends from school they had an afternoon of “Decopatch”(I’m not sure what that is either). They all seemed to have a terrific time and we must thank Ruby’s mum, Christina for all the organisation and catering. Inevitably by Monday Tabby was starting to wilt - the combination of a hectic weekend and the delayed effects of the methotrexate. She could not face breakfast but was determined to go to school – for the class photo. We were not surprised when we got a call from the school at lunchtime saying that she had a sore tummy, felt unwell and wanted to go home. She slept for the next 14 hours.

There are times when you simply cannot give her enough cuddles.

Tomorrow it’s back to the “Sick Kids” for a general anaesthetic, lumbar puncture and spinal methotrexate. You will see from the photo that despite a busy time Tabby's 2 front teeth are still there but are so loose that they are literally “Hanging by the skin of their teeth”. I wonder if the anaesthetist could oblige the Tooth Fairy tomorrow?

As ever, thankyou so much for reading this blog

Keep in touch,

The Lawsons