MRD +VE

Yes we got Tabby's recent bone marrow biopsy test back. MRD stands for "minimal residual disease" and is a very, very sensitive way of determining the proportion of leukaemic cells still viable. My understanding is that a positive result (MRD +ve) means that there is still a significant number of viable leukaemic cells. Around 1/3 of patients have this result and as a consequence progress onto a much more aggressive chemotherapy protocol. Not really the news we wanted. We have gone from "Diet Chemo" (protocol A) to "Cask Strength Chemo" (protocol C)

Over the next 10 weeks Tabby's chemo will be a full time occupation. Although largely as a day case, she will, at times, be attending hospital up to 5 times a week for injections, infusions, boluses and the rest. I don't want Donella to have to do all the hospital runs - and the waiting and waiting. I plan on reducing my workload as much as possible. Quite frankly it is difficult to remain empathetic when faced with a patient complaining of a bit of a niggle when I think of what is happening to Tabby up at "Sick Kids"! The phrases "Man up!" or "Get over it" are often only seconds away.

Tabby and her Kiwi from New Zealand

Despite all this MeRDe news, one of Tabby's nurses is due to go to her class soon to discuss with her classmates what has been happening over the last month or so. We hope that Tabby will be able to attend p2K soon for the odd afternoon or morning. We may have to upsize her uniform a bit! I am not sure her school blouse will fit her at the moment. We now have Tabby's wig. When she tried it on last week Ewan and I both thought she looked a bit like the Vicar of Dibley (neither of us dared to say so at the time). Tabby does not need her wig yet and I think in the meantime we will ask Ruby's Mum to lighten it with a few highlights ready for when the time comes.

Meanwhile, Tabby has been pretty good this "steroid-free" week. Certainly a bit more like her old self. She was particularly delighted to receive a Kiwi from Ali in New Zealand - the power of the internet! In fact we would all like to thank all of you have taken the time to look at this blog - old friends and friends from all corners of the globe. Your messages of support mean so much.

Best wishes,

The Lawsons

Tabby and her "Wiggly"

Sunday was a big day for us. Tabby had the last of her dexamethasone steroids. As you will have seen by the pictures, they have had a considerable effect on her appearance. Fortunately, I think even after three days, we have noticed that her appetite is slowly returning to normal portions and the kitchen is no longer a "24 hour deli".

Sunday morning and Tabby's last steroid tablet for the moment

On Tuesday we had a problem with Tabby's "Wiggly". For children needing regular intra-venous access, particularly with some of the nasty chemotherapy agents, they have a little device inserted under the skin. It is like a small plastic bubble with a metal backing. Under a general anaesthetic this is inserted sub-cutaneously on her chest wall and a tube leading from this is passed into one of the large veins in the base of her neck. It all sounds pretty horrible. Every time Tabby needs a blood test or injection, the skin over the "porta-cath" is numbed with anaesthetic cream and a special needle attached to a small catheter can be inserted through the skin into the bubble. This needle and catheter combo is called a "Wiggly". Yesterday it stopped working properly.

Cue another unscheduled visit to the "Sick Kids".

Tabby and I went to the X-ray dept where under a continuous x-ray image machine we could see dye passing down the tube, but a blood clot acting like a flap valve was preventing blood from being drawn back up. "No problem", "Very common" we were told. Our nurse squirted some "Mister Muscle" clot-buster into Tabby's wiggly and we went home.

This morning Donella took Tabby back to the "Sick Kids". The clot buster had worked and Tabby was able to have another lumbar puncture and spinal chemotherapy under general anaesthetic. After an hour of lying flat(ish) Tabby and Donella went home (via Costa coffee and the statutory cheese and ham panini).

We still do not have the reults of last week's bone marrow test but we are reassured that the delay is not a bad sign. Hopefully we'll find out by the end of the week.

Tabby has asked me to say "Hi" and "Thankyou" to all her friends in primary 2K at school. You will remember that her class all contributed to a special "Get Well Soon" build-a-bear not long after she went into hospital. It appears they could have bought many more bears with the money raised! P2k has kindly donated the extra money to the charity "Its good to give". Like many families in the same position, the Lawsons remain so grateful for the work and generosity of this local charity.

Happy Burns Night,
The Lawsons

Bicycles and Bravery

"I'm being brave because I know I've got to do this to get better". Tabby said this to Donella yesterday leaving the "Sick Kids" after yet more chemotherapy. Tabby has been so incredibly brave and has such insight into her situation. Over the last week or so we've certainly seen mood swings, tantrums and tears. Although these are recognised side effects of high dose steroids who wouldn't have mood swings, tantrums and tears given this situation they find themselves in? This is compounded by her new shape which upsets her even more. Undoubtedly the steroids have given Tabby the appetite of an army. We have never earned so many Tesco Club Points. Thankfully we continue to reduce her dose of steroids and hopefully look forward to the return of normal size Tabby.

This has been a busy week. On Monday Tabby and Donella went to A&A Studios to be matched for a wig. Although she still has a reasonable head of hair it is becoming sparce and thinner. I suspect she will need a wig soon. (This is Tabby we are talking about!). This is funded by yet another of those amazing charities, "Little Princess Trust" who provide wigs for children losing their hair due to chemotherapy. She goes back tomorrow for fitting and styling.

On Tuesday Tabby was back to the "Sick Kids" for more intravenous chemotherapy - the last of her Vincristine for the moment.

Yesterday we were back to the "Sick Kids" for the day. This time, under a general anaesthetic, she had a further lumbar puncture and injection of methotrexate into the spinal canal followed by another bone marrow biopsy. This bone marrow test will assess how effective her therapy has been so far. I am not sure when we get the results but we sit with fingers and everything else crossed. Next week we start a new chapter in her treatment.

Tabby and her new homework

Last night "Mrs Hagan Mail Services" delivered another armful of homework for Tabby. She has already started work on this - between paninis, elevenses, onesies, threesies and afternoon tea.

Throughout this time we have all been overwhelmed by the love, generosity and support from so many people - simply too many to mention. We cannot thank you enough. I should, however, mention one of my friends and cycling buddies Mark Lydon who in a recent cycling event won an electrically powered bike (this was a raffle and not a hint!) Mark kindly donated the value of his prize to the Sick Kids Foundation. Thankyou so much.

Best wishes to you all,
The Lawsons

Our New "Normality"

The Christmas Holidays are over, Olivia is back to St.Andrew's University, Ewan is back to school with Higher prelims next week, I'm back to work and Tabby had another whack of intravenous chemotherapy yesterday. Donella remains off work for the time being. Will this be our new "normality"?

I have frequently been asked "How does the Chemo affect Tabby?". In all honesty, there is no apparent reaction to each dose. This week, however, we have all been far more aware of the cumulative effects of her treatment to date. I suspect her high dose of steroids is behind much of it. You will see from pictures that Tabby's face is a little fuller and her constant appetite is resulting in a bit of a tummy. It's fortunate that one of her favourite toys is "Britney" from "Alvin and the Chipmunks" I think the similarity is purely coincidental.

Brief shopping trips are becoming an ordeal for Tabby - even with the lure of a panini. She needs help in and out of the car. Walking around the Gyle is limited to 10 -15 minutes before she is too tired or uncomfortable to continue. Worst of all, she is all too aware of her fatigue and limitations -tired and frustrated.

This is not meant to be a miserable blog but simply illustrates our new normality. On a brighter note, however, next week she starts reducing her dose of steroids and so hopefully much of the above will begin to resolve.

"Happiness is a stack of home-work!"

Most of the time Tabby remains her chirpy, cheeky and lovely self. Today she was delighted to start the first of her school work. Mrs Hagan kindly delivered some work from Tabby's class teacher Mrs Krumins. I think Tabby was really pleased to have something familiar to do. We now have an I pad and Tabby now has her own e-mail address so communication with the school and her class and friends at Mary Erskine has been restored. Her e-mails are great and unlike her older siblings, she is quite happy to share them!

Next week is Tabby's last iv dose of vincristine for this session followed by an important bone marrow aspirate. With the bone marrow we will get a realistic idea of how effective her all chemotherapy has been and will influence what happens next.

Thanks to all of you for keeping in touch,

The Lawsons

Bears that Blog

After a stormy start to the week, I am pleased to say that the last few days have been reassuringly mundane. Long may they continue.
Tabby and the remains of her trampoline


School friend Poppy visited yesterday. Like Tabby, Poppy also got an I pod touch for Christmas so this evening they started "Face Timing" -i.e. they see one another as they talk on their I pods. I have absolutely no idea how it works and hope they can show me how sometime.


We were also pleased to see Tabby's P1 teacher Mrs Hagan today who popped round with a present for Tabby from Jonathan her sixth form helper from last year. Tabby thought Jonathan was wonderful. Tabby received a super personalised Build-a-Bear from Jonathan. It is rumoured that Jonathan occassionally works in Build-a-Bear and may even pose as a giant teddy bear from time to time. We hope there may be a position for Ewan in his Monkey outfit soon. He is brushing up his CV - and his tail - at this moment!





Tabby is back to the "Sick Kids" on Wednesday for the morning to get her intravenous Chemotherapy once more. In the meantime she continues on her steroids and 24/7 munchies.

Best wishes and thanks again for all of your help and support,

The Lawsons

Paninis & Flying Trampolines

I am pleased to say that having been re-admitted to hospital on New Year's Day, Tabby's tummy settled down and she was allowed home on Monday morning. One of the side effects of the dexamethasone steroids that Tabby takes is to increase her appetite. At the moment she is eating us out of house and home. No sooner is one meal finished than she is planning the next! I suspect her little tummy doesn't know what's hit it. Incidentally, if you are aware of any panini eating competitions coming up please let us know.



Tuesday was relatively uneventful - other than our 12 foot trampoline taking off, flying across the garden and landing on the greenhouse courtesy of the storm force winds. Tabby looked on as Donella, Ewan, Olivia and myself hung onto the trampoline to stop it disappearing up and over the garden wall. After that Tabby went back to the "Sick Kids" for an hour or so for more Chemotherapy. Not nearly as exciting as the flying trampoline.



Tabby is well aware that because of her treatment, she is likely to lose her hair- like many of the other children on the ward. In fact we overheard her with her friend, Danielle, discussing how she was going to go bald whereupon Danielle offered her the use of her witches Halloween wig. No great taboo there then! Tabby normally has quite long hair so to lessen the impact of her hair loss, Ruby's mum, Christina, who is a hairdresser, kindly came round and "Bobbed" Tabby's hair. Tabby loves her new look and we think she now looks like the little French girl in the "Petits Filous" advert



Tomorrow is another "Chemo day" with a short visit to the hospital for an intramuscular injection of asparaginase. If that sounds painful then I think it probably is. At Tabby's suggestion we'll go for a cheese and ham panini at Costa-Coffee afterwards - who needs chocolate?




Once again thanks to all of you who take the time to read this blog. Keep in touch.




Best wishes,


The Lawsons

Back to Ward 2

After the excitement of coming home on Friday lunchtime, Tabby was re-admitted to wd 2 "Sick Kids" this morning - less than 48 hours later.
Tummy pains and an upset tummy continued to deteriorate over the course of Friday and Saturday so that Hogmanay was a very subdued and abstemious affair.
This morning things seemed no better and so Tabby and I trooped back to wd 2. Here, in a scene reminiscent of "The Great Escape", we once more rejoined all the parents and patients we had said goodbye to two days earlier.
Once again poor Donella packed her overnight bag and took my place at the hospital this evening.
I guess this is the first of many ups and downs we will experience over the forthcoming months. Hopefully if all the test are normal and Tabby's tummy settles we could be home soon (again).

Happy New Year,

The Lawson