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