Tuesday, 16 August 2011

The Beginning

October - November 2010

It was late November 2010 that we starting noticing unusual things about Supatra but they were things easily written off as just growing pains.  In late August and ealry September Supatra became unusually very fussy about her clothes.  They all seemed to be too tight and felt funny on her skin even clothes that were for girls several years her senior.  At this time she also started to feel more clumsy and lost interest in dancing abd ballet.  She would also bump into things more often.  On October 7th she was knocked down and unconcious for a few minutes at school.  But these things were not noted by us in totality and we just wrote them off as Supatra going through a clumsy and difficult period.  However, in late November we noticed that her left eye lid would not blink with her right eye and her behaviour about her clothes had become worse; even her Grandmother stated that something was wrong and so we made an appointment to see the GP on 21 December 2010.  The GP examined her for all of two minutes and stated that she could see nothing wrong with her.  When we protested, she offered up a second opinion with a specialist and we excepted.  Unfortunately, this follow-up appointment was not due until 14 February 2011! 

January 2011

Supatra's balance continued to decline over the Christmas holidays and by mid January we noticed that her left cheek was not pulling back as much as her right side when she smiled.  This really started to worry us and we started discussing taking her back to the GP but opted to wait another few days.  On 24 Jan 11, the day before we were about to take Supatra back to the GP she was at a friends house whose father happened to work in an A&E department at a local hospital and he noticed a problem, examined her and immediately advised us to take Supatra to our Hospital A&E. 

As soon as my wife called me late in the afternoon I rushed home to take Supatra to the hospital.  We were seen relatively quickly because our friend the doctor had called the A&E department ahead of time to let them know we would be coming in.  The first doctor to examine Supatra seemed concerned but told us that we should come back first thing in the morning so that a neurologist can examine her.  The next day we arrived at the hospital at 0800 and Supatra was examined by a nuerologist and several other doctors.  When all these other doctors came in I started to worry but was still thinking that it might be a bruising of the brain from her fall at school.  We were there all day and in the late afternoon they advised us that she needed to be admitted to the hospital and undergo a CT Scan and other tests the next day.  I called Punny and told her the news although I still did not have a diagnoses nor why the doctors were so concerned.  Nobody really wanted to talk to me and in hindsight I understand that they already suspected the worst - a brain tumour - and that of course they could not say anything until they were absolutely sure.  

On 26 Jan 11, we were asked to meet with the lead doctor and several other people in a room....we knew it was bad by the look on their faces but we were not prepared for the words that came out of the doctors mouth, that Supatra had a brain tumour called Diffuse Intrinsic Pontine Glioma and that it was incurable and that the median survival time was 9 months.  The doctor proceeded to tell us that the only hope of slowing down the progression of the tumour was immediate radiotherapy.  She also stated that we should consider celebrating Supatra's birthday and Christmas early.  It was hard to speak and there were periods of silence between us and the doctors.  I only managed to feebly pose a few questions before our emotions got the better of us and we were left alone to cry and console each other.

26th of January 2011, my wife's birthday and now to be marked as one of the worst days in our lives! 

In order to reduce the swelling in her brain Supatra was also put on steriods.  This provided some near immediate results and reduced the symptoms of the left facial palsy.  For the next two and a half days she remained in hospital undergoing further tests. I spent the nights with her and Punny the days as we also had to take care of Supatra's one year old brother Jason.  I cried everytime I looked at Supatra and thought about what was to come yet Supatra was blissfully unaware of the severity of the situation and continued to do what all little girls do...play and be in good spirits.  I was left in a state of shock as was Punny.  To her credit Punny right away started to do some research on the internet about brain tumours and cancer in general and found several sites that discussed nutrition and diets.  She also got in touch with her brother in Thailand to see what might be available there for treatments.  We sent Supatra's diagnosis and MRI scan to him so that he could get other opinions about the diagnosis.  I on the other hand did not know what to do and could only manage to inform my employers and call my mother to get the word out and to ask her to come back to England to help take care of Jason while we focused on Supatra.  For the next two days we tried to explain to Supatra about her 'lump' in her head and how we needed to treatment it and make it better.  The Addenbrookes C2 Children's ward were excellent and the last two nights there we were given a private room so that I could sleep with her.  On 28 Jan 11, Supatra was discharged from the hospital and we were told that her radiotherapy would start on the 3rd Feb.   Punny had already started to prepare for Supatra's home coming by preparing healthier food and making lists of foods not to eat and those that had suspected anticancer affects.  The best thing Punny did though was call her brother because he quickly found someone in Thailand that has developed a herbal medication made from White Crane Flowers and also known by the name of Rhinacanthus Nasutus from the Acanthaceae plant family.  I am not sure if there are other ingrediants in this medication but her brother has said that this doctor a retired oncologist has had a big following and success stories with this plant extract.  Unfortunately he also told her brother that he did not think it a cure but that it may slow down the tumour growth.   Punny's brother quickly sent over a two month batch and by around 10 Feb 11 we had it in our hands and began giving it to Supatra.  It comes in red gelcaps of which she must take 4 caps in the morning and 4 in the evening approx. half hour after meals.  Additionally, the treatment came with some small white pills which she is supposed to take one every other day.  At this time we also gave Omega 3, half a pill of zinc (supposedly improves the movement of nutrients between the blood brain barrier), green tea and a few other supplaments.  A big thank you to Punny's brother Narainrit (Mann) Chukkurat for his quick action and effort he put in to getting second and third opinions in Thailand.

During her hospital stay her classmates made wonderfull get well cards that we placed all over the house.  Supatra's teachers and our friends were wonderful with the cards, well wishes and gifts they gave to Supatra.

February 2011

Before Supatra could start her radiotherapy she needed to be fit with a mask that would keep her head perfectly still while under the treatment.  The Addenbrookes play nurses were excellent in talking Supatra through the procedure and in helping her get through the first few radiotherapy sessions.  In order to fit a mask they had to bring her into a room to have a plaster gauze mixture placed all over her face and head which then dried within minutes.  From that impression they would mould a plastic sheet into the form to produce a clear plastic mask.  Considering Supatra freaked out the first time she was asked to go into the CT scan a week earlier she was very brave and undertook everything she was told.  The key was explaining it to her in detail and answering any questions she had asto why she needed radiotherapy and a mask.  The play therapists also had Supatra create a picture poster that she could then add a sticker to for each day of her treatment...she really liked that.  The radiotherapy was conducted over six weeks with an appointment every Mon-Fri.  She was great and was the perfect patient never moving during her treatment.  Supatra also enjoyed talking to and on occasion making fun of one of the young radiotherapists named Graham.  I can't thank the radiotherapy team enough for the way they handled Supatra and made her feel at ease for each of her treatment sessions.  But of course as with everything it was not easy going to the hospital everyday, sometimes waiting over two hours over our appointment time to get the treatment done.

During this month we were also giving her the Thai herbs and thrying to get her to drink freshly made vegatable and fruit juices.  It was very difficult at first and she did not like taking any of this new healthy food and hated taking the pills.  Everyday we had to explain to her why it was important without telling her the whole truth about her condition.  It was very hard on her and on us as we were still under considerable shock and stress from her diagnosis.  Although Supatra was still on a diminishing dose of steriods, her eating continued to suffer (she was always a fussy eater) and we were starting to worry about her health and the fact that her body was not getting the nutrients she would need to fight this tumour.

On 10 Feb 11, we celebrated her brother Jason's 2nd birthday at home.  Oma and Supatra baked a cake for him.  Of course Supatra was just as excited about the presents, maybe even more so then Jason was.  Happy birthday big guy! 

By end of February Supatra's symptoms were starting to decrease because of the steriods and probably because the radiotherapy was starting to show some affects.  But we were really worried about Supatra's overall health as she still refused to eat properly and was losing weight.  Once out of the Hospital she also went back to school which she really missed.  The head teacher Ms. Dorrington and her class teacher were all great in doing whatever they could to make Supatra's return to school as enjoyable and as safe as possible.  Milton CE Primary is a great school!
Of course seeing her symptoms go away for the most part eased our thoughts of doom a little and we were hopeful for a miracle with the radiotherapy, change in diet and the Thai meds.  But each day while in my car driving to and from work I continued to sucome to my thoughts of the inevitable and cried my eyes out thinking of the worst to come for my little girl.........why her, why us?

March 2011

By end February or early March Supatra was starting to react to the steriods with a big increase in her appetite.  Increase appetite is one of the big problems with the steriods along with restless sleep, dependency, and reduced brain function.  But it was the increased appetite which affected her the most and started to dramatically change her appearance from a skinny little girl to one with a big stomach (as if she was pregnant).  By the end of the month the weight was starting to show in her face and everywhere else on her body.  Supatra wanted to constantly eat and instead of battling with her over not eating it was over her wanting too much food.  At first we didn't even think about the steriod side affect of appetite increase and we just thought she was regaining her appetite and happy for her. Unfortunately, we let her eating get away from us and it was also hard to explain why she could not have food which resulted in her rapidly putting on weight.  It was hard for us to watch the change in her and I started getting scared that I would not remember how she looked before.  We had and still have today a most difficult time in trying to cut down on her calorie intake and keep her weight at a steady level.  Her new weight accentuated her facial palsy and at times did not look at all like the Supatra we once knew.  The steriods also made her arm, leg, and the hair on her back grow.

At this time we also noticed that Jason was feeling left out as everyday I had to go with Supatra to the Hospital for her treatments and he was always left at home with his Oma.  My mom was a big help to us since her arrival in late January.  As soon as I called her with the news she dropped everything and my sister paid for her flight over to the UK.  However, at the end of the month it was time for mom to return to Victoria BC and everyone was sad to see her go.  We hope to have her come back again maybe at Christmas time for a few weeks.  Thanks for everything you have done for us, mom!

1 comment:

  1. Our thoughts and prayers are with your family at this time. Please keep us updated when you have a chance. Megan & Henry E.