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The 16^th December 2011 was a bad day. Six and a half year old Tabby was diagnosed with Acute Lymphoblastic Leukaemia. Two and a half years later at the “Sick Kids” Hospital, the seventh of May 2014 was a whole lot better. Tabby had her final dose of  spinal chemotherapy and her  bone marrow biopsy came back clear. What a relief, what a day.  No fanfares or trumpets, no balloons or bunting, just a profound sense of relief.

The morning started with a trip to the operating theatre for Tabby to get her last spinal chemotherapy and then a bone marrow. With her “wiggley” in place (indwelling iv line) I accompanied Tabby to the anaesthetic room. Reading her “Where’s Wally?” book she drifted off to sleep and I was lead back to the ward to await her return. I’m allowed to have a lump in my throat occasionally.

An hour or so later she was back on the ward with a breakfast of toast and jam. Shona then re-appeared – not wanting to interrupt Tabby’s gossiping with the nurses. “She’s going to tell us the result of Tabby’s bone marrow.” I thought to myself. “Why is she hesitating?” I wondered. Shona explained that she had reviewed the biopsy and it was all clear – after over 2 years of chemo, not normal but all clear. All the staff of ward 2 were fantastic -  hugs a few tears. How can we ever, ever thank them enough?

We took the rest of the day off and went for a pizza.

Charity Couture

Since January, Donella and Michelle had been preparing for a grand “Charity Couture” at Lulu’s             night club in town in aid of the charity “It’s good 2 give”. Many, many hours were spent by Donella and her team  preparing, labelling and pricing a houseful of clothes – second hand designer labels. On the day, Tabby  and friend Danielle raised hundreds of pounds selling raffle tickets to everyone.  The day was a great success. Thanks to everyone who helped out and to everyone who came along to make it such a good day.

Over the last two and a half years we have certainly become part of the “It’s good 2 give” family.  Donella is a trustee and the rest of us try to help out in any way we can. Tabby is now a “Young Ambassador” for the charity. She will soon need a P.A. to organise her various engagements.  Buccleuch Property has adopted “It’s good 2 give” as its charity this year. In preparation for its annual  “Buccleuch Property Challenge” in Drumlanrig Castle, they asked Tabby along for an advertising photo shoot. A week or so later, we spied Tabby on a Lothian Region Bus. Not as a fare paying passenger but  with a group of other “It’s good 2 give-ers” on the side of the bus. More recently, St Andrews University Fashion Show has adopted “Its good 2 give” as their charity this year which is excellent news!

Tabby's Bus

Personal Trainer

At school, everyone has been so  generous and happy with Tabby’s news. Mrs Couper, her teacher organised a special party for Tabby and her class to celebrate.  Donella and Olivia went along as did the Head and deputy Head of the junior school. They  all had a lovely afternoon. Each of Tabby’s classmates made a little speech about her. Some of them were terrific – if not imaginative!  I couldn’t make it as I was working. Probably a good thing too as no-one likes to see a Dad welling up!

Feeling Proud

"Bend it like Beckham!"

At the end of term, Tabby took part in the school sports day.  She won the obstacle race but cheering wildly I forgot to take any photos. There were lots of other races including football dribbling skills! At P4 prize giving Tabby won the class prize for “Kindness and commitment”. We were very proud as you can imagine. I don’t remember them having that prize when I was at school.

At the end of June we had Olivia’s Graduation from St.Andrews University. It was a great day. The weather was fine, Olivia looked great  and the Prosecco flowed freely. Too freely in fact and so Ewan (our named driver) drove a car load of sleeping Lawsons back to Edinburgh.

So where do we go from here?

Tabby has already had 2 follow up appointments at the “Sick Kids” and her blood tests have remained good. She has monthly appointments for the first year, 2 monthly for the second year, quarterly for the third year and so on. Thereafter annually until the age of 19. So still a long spell of surveillance. She still has her “Porta-cath” in place and this will need an operation towards the end of the summer to remove it.

With each week that passes Tabby looks brighter and stronger  and her appetite improves daily.  It really seems as though with her new found energy she wants to make up for lost time. Every evening we are in the garden – trampoline, badminton, Frisbee, football or cycling in Dundas estate.

Over the last two and a half years we have met so many wonderful, kind and inspirational people, be they patients, parents, nurses, doctors or charity colleagues.  It has genuinely opened our eyes.  It is ironic that it takes a child’s cancer or illness to recognise or make one aware of all that can be good in society –friendship, support, dignity and hope.  I am sure we will remain involved in childhood cancer and charity work for a long time to come.

Indeed, there are so many people we need to thank.  All the staff, doctors and nurses of ward 2 (I would love to name you here but  should probably respect your confidentiality), family, friends, work colleagues, everyone at Erskine Stewarts Melville Schools, 801 from Dalmeny cyclists, Kirkliston Church  and all of you who have taken the time to read this blog over the last couple of years.

During all his time, if you’ve read the blog, you will recognise that Tabby has been simply amazing. She has taken everything that has been thrown at her. She has invariably remained so upbeat, cheerful and resilient. Words fail me. Only on one occasion, earlier this year, did she complain about her leukaemia and “Wish I could be better again”. That was difficult. 

Time to pamper

Now we have the chance to make up for lost time. We are now able to go on holiday and this weekend we are going on or first family holiday for 3 years. Off to Barcelona for 2 weeks. As you can see, Tabby has already  started assembling her summer wardrobe.  “A girl’s got to look good on holiday”.  She is now making up for lost time.

Thanks  for reading this blog for the last two and a half years.

The Lawsons

Time to shop

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             

Sun burn and Scrabble

In the last blog post, you will remember that Tabby spent all Christmas Holidays in Hospital. When she got home, things gradually returned to normal – back to school, tennis lessons etc – but Tabby’s cough never really settled. Frustratingly, on the penultimate day of school before the mid-term break in February  Tabby’s temperature rose up towards 40C. Her blood tests showed she really had no white cells so we were back in hospital with a recurrence of her chest infection.  A “Ground-Hog Day” sort of moment.  We were beginning to wonder if she thought of Ward 2 as some sort of “Holiday Club”

Any way we passed the days  making things out of lego and playing scrabble. I have to say that she is pretty good at Scrabble and has a good vocabulary. The big problem, however, is adding up the scores at the end – as you can see in the photo.

Running out of fingers

During the consultant’s ward round at the week-end, the duty consultant came into our room and we had a long discussion about Tabby’s chest infection, her anti-fungal treatment and  her blood results. At the end of this he turned to Tabby and asked “Well Tabby, is there anything you would like to ask?”

Tabby looked up from her iPad and replied “What’s the longest river in America?”

Well, he did ask!

Following our half-term blip we once again got back to our relative normality. It is ironic that having sailed through 16 months of “maintenance therapy” up to Christmas 2013, it has been  the last 4 months which have been the most problematic. I suspect it relates to her recent fungal chest infection, which despite appropriate treatment is unlikely to go away until her chemo finally stops. One (of many) of the problems with Tabby’s antifungal medication is that it causes significant photo-sensitivity, i.e. she gets sunburn very easily. I suspect she is the only child in her  year who is already using  sun lotion and sun-block on a regular basis. Even after a bit of sunshine she gets very red. Anyone else had sunburn here in Edinburgh so far this year??

With the appearance of our first dry, sunny,  spring day  (and appropriately sunblocked) we went for a cycle around Dundas estate. I should point out that Tabby cycled while Donella and I jogged along beside her. A woman walking her dog suggested that Tabby was our trainer.

A week later we were invited to cousin Jessica’s 18^th Birthday party at The Blytheswood Square Hotel in Glasgow. A chance to catch up with friends and family and for Tabby to chat with Charlotte over pre dinner cocktails.

Okay so its not Courcheval - but at least its not crowded!

As the Easter Holidays began we were keen for Tabby to do something different. It has been four years since Tabby was last on skis so we booked some lessons at Hillend dry ski slope. The weather was grey miserable and wet but this did not seem to put Tabby off.  

Looking good

We obviously were concerned that in the last 12 months Tabby has broken both wrists falling of her bike then falling at tennis. Skiing, therefore may not seem entirely sensible. Anyway she came through unscathed and is keen to do more. Result!

 So what next?  Well as I mentioned at the start, Tabby has been on her maintenance chemotherapy for the last year and a half. This is made up of 20 x four week cycles. The last and twentieth cycle starts today!  7^th May Tabby has her final spinal chemotherapy as well as, hopefully, her final bone marrow biopsy. We will then have a nerve wracking follow up appointment on 4^th June to hear the results of her bone marrow biopsy. We all hope and pray that this will be the end of two and a half years of chemotherapy and the last of her Leukaemia. In good old “Blue Peter” tradition “We hope we will have some very exciting news in the next post!”

As ever, thanks for reading,

We’ll keep you posted

The Lawsons

Hair and nails done

First post of 2014

            My apologies for the 5 month gap since the last post on Tabby’s blog but it hasn’t all been my fault. Firstly my PC is slowly sinking in the west and can barely raise an e-mail. Secondly,  “No new is good news” - Tabby has been cruising along well with her maintenance therapy – until December that is!

 Since the last post I did indeed manage to climb Kilimanjaro with a wonderful group of people raising funds for “It’s good 2 give”. Thank you to all of you who helped me raise £12,000 for this charity. It was an incredible experience and had everything required for a “mid-life” crisis.  I would recommend it to anyone looking for a challenge and a bit of adventure.

Another plaster coming on

Having broken her  right wrist earlier this year, Tabby made it a matching pair and broke her left wrist – playing tennis -  at the start of December. She had played a rapier-like back hand and fell over landing badly on her left hand. Plaster time! (again).

 

Christmas market with Tabby and Donella

Although Tabby had  been chosen to be Mary in the church nativity play we were aware that on the day of the performance she would be in the middle of her steroid week – never a good time. Steroids tend to make her grumpy, moody and miserable possibly taking method acting to its extremes! The forearm plaster was the last straw and Tabby decided to pull out. We did however get the chance to see our friend , and "It's good 2 give" patron Grant Stott in the pantomime -  Peter Pan at the King's Theatre.

 

The "Lawson" box at the King's

Mischief full of the Christmas spirit

Throughout November and December Tabby had a series of coughs and colds with courses of various antibiotics.

On Christmas Eve, however, she had another temperature – back to the “Sick Kids” for a check up.  No Neutrophils! Tabby was admitted to Wd 2 back to our old room we had stayed in 2 years earlier when Tabby first became ill.

Christmas morning at the "Sick Kids"

At Midnight, Santa and the Christmas Fairy visited us in Tabby’s room and left a stack of presents. On Christmas Morning, the family visited us and Olivia took over and allowed me home for Christmas Dinner with the rest of the family (any excuse to avoid brussel sprouts). Wined and turkeyed, Ewan then us back later in the afternoon. All this time, Tabby remained on 2 hourly observations and 4 hourly  antibiotics. Sleeping on a camp-bed in Tabby’s room was obviously tricky!

Tabby home for Boxing Day

On Boxing Day, Tabby was allowed home for the afternoon (between iv’s) to let her see everyone and open some of her presents. Over the following week, Donella and I continued to take turn about with the overnight shift. Tabby’s temperature and neutrophil count became the subject of  regular texts and e-mails – when wi fi allowed.

Tabby had a CT scan of her chest and on Hogmanay, after a week of antibiotics, Tabby’s temperature was still not coming down. She looked a bit rough! She was reviewed by a respiratory consultant who confirmed that she had a significant Pneumonia and recommended a bronchoscopy under general anaesthetic in order to find out what bugs were causing the pneumonia.

I have spent the last 30 years seeing patients getting anaesthetics – but when its your wee girl... Anyway after her bronchoscopy we took her back to the ward where, after an hour or so, she perked up and we watched the usual Hogmanay television.  I had my can of Carlsberg that I had smuggled in earlier that day and Tabby promised not to tell.

They did say the anti-fungals would have side effects!

 

Tabby’s bronchoscopy confirmed she had a “fungal pneumonia”. She was commenced on and fungal drugs – horrible. Her condition, however, rapidly improved and a week later she was discharged. Although she missed the first week of school, Tabby returned to school 2 days ago. Maybe back to tennis tomorrow?

Recovering from Tabby's bronchoscopy!

If Ewan leaves his lap-top behind, the posts will be regular again.

Once again thanks to everyone for their love and support over the last few weeks especially every one at Kirkliston Parish Church. A special thanks to Maggie McC for her generosity in providing food deliveries for Ewan and I, especially a wonderful lasagne which has converted Ewan into a bona fide lasagne lover  

 

Thanks for reading and all the best for 2014

The Lawsons