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

"Tabby Birthday to you!"

Following the last blog, Tabby's blood tests were all pretty good which meant she could start the next phase of her treatment. This is part of regime C and known as "Escalating Capizzi no. 1". It involves incremental doses of intravenous methotrexate every 10 days. We have been warned that it can be hard going and will continue until she can no longer tolerate the side effects. It all sounds horrible and indeed Tabby has had problems with mouth ulcers sore tummies and sickness already. With the appetite of a sparrow she has lost over a kilogram in the last fortnight - thats a lot when you only have 22 to start with! The dietician has given us a variety of high calorie and high protein drinks to try, (none have met with approval so far) and encouraged us to let Tabby have anything she fancies including fried foods and Big Macs. At the moment healthy eating is not a priority.

Despite all that is going on, Tabby remains irrepressible. Where she gets her energy and spirit from is beyond me. As you will note, it was her birthday today and as ever she was desperate to go to school. We have, since Easter, had a few false starts where, having arrived at school, Tabby has not felt well enough to continue or has been sick and returned straight home. It is disappointing and a bit demoralising for her. Today I picked her up after school and I think it had all been a bit of a struggle - "just feeling poorly and sad".

For birthday dinner tonight we had Pizza and we watched (she danced to) "Happy Feet 2". Perhaps Tabby identifies with "Mumble" (the dancing penguin) - a little different but oh so talented!

We would all like to thank everyone who has sent or delivered - even in torrential rain- Birthday cards and wishes. It is very kind of you all. Anyway, we will see what tomorrow brings and decide if Tabby is fit for school.

Last week-end Tabby and her friend Danielle went up to stables near Kinross to look at horses. After that, they went to play in the local park She had a wonderful time and enjoyed her day out.

Tabby had her chemo at the start of this week and so, in theory, has a quiet few days ahead - we hope. The only thing on the horizon is the imminent departure of her right front tooth. It is now very loose and sitting at an odd angle - she may dance like "Mumble" but is looking more like "Nanny MacPhee".

Once again, thankyou all so much for your support and good wishes and, as ever, taking the time to read this blog

Best wishes,
The Lawsons

Happy Easter

Those of you who read the last blog will remember that we were looking forward to our first chemo-free week followed anxiously by the start of a more toxic regime. It didn't really work out like that.

Despite having no chemotherapy 2 weeks ago, Tabby was really off colour. She only managed 2 mornings at school, had 2 unplanned visits to the sick kids and a cocktail of different medicines (pain killers, anti sickness tablets, strong ant-acids and a laxitive for pot luck!). She had a really sore tummy, couldn't eat and was being sick. I suppose a bit of a leukaemia reality check.

By the end of the week we were pleased to see her perk up a bit and her tummy settle down. We even went for our usual cycle round Dundas estate and took bread to feed the ducks. The ducks weren't interested; the geese just hissed and when we ran out of bread we were persued by the swans who chased us up the embankment. I've never seen Tabby get on the bike and cycle so hard!

"Tabby! Quick, the swans are behind you!"

Our hasty departure was all the more impressive when we got Tabby's blood count result the following day. It was so low that the methrotrexate treatment could not take place. We have been given another week to see if it comes up enough for Tabby to start the next phase of her treatment.

As you can see it is difficult to plan ahead but we are relieved to see Tabby eating once more - 2 visits to Pizza Express and a curry in the last week alone!

Because of her low blood count, yet again we felt unable to take her to the Easter Service in Church but I am sure she will get there soon. Tabby would also like to thank Angela at Murrayfield Hospital for her personalised Easter Egg. It is a big chocloate egg which says "Tabby" in white chocloate. Try as I might, I still cannot get the letters T-A-B-B-Y to look like D-A-D-D-Y . Then I would have eaten it myself!

Tabby was also really lucky to get a lovely Easter Egg and Build-a-Bear voucher from our friends Mandy and everyone at "Jog-Scotland, South Queensferry". Thankyou so much Guys! (send me one and I may start running again!)

We spent most of yesterday having an Easter Egg hunt in the Garden. Tabby's cousin Rory was so patient hiding more and more Easter Eggs around the place. Tabby and Donella then made Easter table decorations for Easter Sunday dinner.

Reading this, it does seem most of our life revolves around food and eating. Maybe it reflects a change in emphasis in our lives and when Tabby is able to eat we want to make hay while the sun shines.

Tomorrow, it's back to the Sick Kids for a blood test and if it is ok then all systems go once more after our unexpected Easter interlude. This means a bone marrow biopsy and spinal chemotherapy on Wednesday under general anaesthetic. Followed by intra muscular chemo (the sore one) and intra-venous methotrexate on Thursday. Back to reality!

We hope you all had a lovely Easter,

Thankyou for reading the Blog

The Lawsons

Oh, and well done Edinburgh Rugby for beating Toulouse on Saturday - What a day!

Easter Bonnets and Bar-b-ques

Since the start of the year, Tabby has been going to ward 2 at the "Sick Kids" between 2 and 5 times a week for chemotherapy, blood and marrow tests. Last week, she and Donella returned for a consultant update. Our consultant, Dr Thomas, told the medical students in attendence that Tabby was the model patient and despite all that was going on was still going to school and playing tennis and going swimming. Tabby is amazing!

At the end of last week Tabby had a blood transfusion as she was getting a bit anaemic. We cannot decide if the donor was Usain Bolt or Rhianna. She has not stopped running around, dancing or singing since. We can barely keep up!

Without doubt the chemo does take its toll - unexpected tummy or back pains, sickness and lots of early nights. Tabby may feel really hungry but as soon as food appears she has a sore tummy and cannot eat. At other times all her old favourites taste horrible or just yeuch. So far, however, chicken fajitas remain a winner. It can be very hard and we just have to go with the flow.

There are so many things that Tabby wants to do and although she feels well enough, with only a handful of white blood cells she is really susceptible to any infection or bug going round - she has just finished a course of antibiotics for a chesty cough. She really wanted to go to Sunday school today, but for all these reasons, we thought it best for her to stay ay home. Tabby cannot wait to go back to Sunday School and see all her friends again.

We have had a good weekend. Tabby made an Easter Bonnet at school and proudly wore it when I picked her up on Friday.

Today Donella, Tabby, Olivia and I went for a cycle around Dundas estate. In the warm sunshine we saw pheasants, swans, rabbits and llamas (yes there is a field of them at Dundas).

When we got home we cleaned all our garden furniture and had the first Bar-b-que of the year - until the gas cannister ran out! Hey, who cares? It was just nice to sit out in the warm evening sun. Here's hoping for a long warm lazy summer.

Next week for the first time since December, Tabby has a Chemo-free week. The week after, however, the gloves are off!

We start on the "Escalating Capizzi Regimen". This is an intensive period of high dosage of chemotherapy. Although all is scheduled on an 0ut-patient basis, we have been warned that most children on this protocol need to be admitted as an in-patient at some stage. We will wait and see. Rest assured we will keep you posted.

As ever, thankyou for reading this blog, your support and your prayers,

The Lawsons