Wednesday, 31 August 2011

Rolling Seas

Southhampton dock arrival centre
Getting ready for her safety drill.

Checking out the ship.

Waving goodbye to Southhampton harbour.
Hello all.  We are currently at the tail end of day two aboard the QM II and the seas are starting to roll the ship today....could it be remnants of Huricane Irene?  Well, Punny is starting to feel sea sick but the kids are loving it so far.  Supatra and Jason have been with the onboard daycare most of today and into this evening.  In Fact, we checked on Supatra about an hour ago and she was having so much fun and was not tired at all.  Tonight she is staying up for the Panda 2 movie which the daycare staff are taking the older children to starting at 1030pm.  We tried to convince Supatra that this would be too late for her and that she would probably fall asleep before that but she refused to listen and was determined to stay up and go to the movie with all the other kids.  She continues to be very energetic with only some complaints about her left eye hurting her but we think this is due to her being on her new DSI for so long.  She remains off the steriods and she seems to be doing great.  Being on the ship has been great so far except for eating in the restruants as both Supatra and Jason tend to act up, making eating out quite stressful at times for me and Punny.....oh well I guess its normal with little kids. 

Jason is being as cute as ever but is also starting to become more demanding.....but very cute and cheeky!  Well, internet connections aboard ship are very expensive so I am not sure how often I will update this blog but will try at least one more time.  I think I need to stop typing as the ship is really rolling now and it is making me dizzy!  Must also go check on Supatra in the movie theatre to make sure she is OK.

Sunday, 28 August 2011

Final Trip Preparations

Its been a week so time for an update.  First, I want to again thank everyone who has donated funds for Supatra's treatment as every little bit helps and will extend our ability to keep her on it.  I especially want to say thank you to all those at work who have helped or tried to help with information on the Houston area, finding a car and a place to stay, etc and those friends of friends who have offered to assist where they can.

Supatra continues to do as well as the previous four weeks off her steriod medication.  She has shown no further signs of a decrease in her mobility and motor skills.  In fact she is really surprising us with her energy over the last week as we have been pretty busy with her visiting and playing with various friends before she goes away.  Our friends Mie and Marcus made a beautiful little book taking photos that had Supatra and their son Oli's picture together and then putting it in a professionally made book with a short story line.  Supatra's best friend Isabell also put together a scrap book with photos of them and a description of each in her own hand writing.  Well done Isabell!  We will take these along on the trip so that Supatra has something to remember you by.  Then there are the countless other parting gifts Supatra has recieved from other friends and her teachers; all very much appreciated by us and Supatra. 

Me and Supatra had a very touching moment a few evenings ago when we were sitting together while she was taking her herbal medications.  I can't remember what triggered it but Supatra told me that 'I don't like being chubby because I don't like the way it makes my face look'  to which I told her that she would always be my little angle no matter how she looked, chubby, skinny, short, tall, whatever; I will always love you.  Supatra then moved closer to me and hugged me and began to cry and of course that made me get all teary eyed as well.  After a few minutes I stroked her hair and told her not to be sad and cry and she stated 'its not a sad cry but a happy cry' and hugged me some more...a very happy and sad moment for me. 

Yesterday evening I was sitting with Supatra and her brother Jason and as she was hugging her brother she said that she was going to miss him when she grows up.  So I asked why and said that Jason will still be around and Supatra says 'ya but he is not going to be around when I have kids!'  I said, no your right but you will still get to see him and you can visit each other.  She said, 'I wish I could marry him', to which I explained that sisters can not marry their brothers...she loves him and is a good big sister always including him in her games and trying to teach him stuff.  I think, like me and Punny, Jason will be lost without her.

This week has been fairly stressful for me trying to sort out all the last minute details of our trip to Houston, Texas.  The big piece that is still missing is our longer term accommodations.  We will initially stay in a smaller one bedroom extend-a-stay type place while we look over some options at same time.  We are hopeful that we will find something suitable fairly quickly.  We are also still trying to determine whether or not it will be possible to bring everyone back home to the UK after two months so that we will not have the additional living expenditures to worry about if we are forced to keep Supatra and her mom in the USA.  I find the search for a supporting doctor in the UK very frustrating.  I don't see where the problem lies even though Supatra's Dr. has explained her and the oncologists teams position. A Dr. just needs to monitor, pass on medical info to the Burzynski clinic and be responsible for ordering blood work and MRI scans and more importantly needs to assert that they are Supatra's Dr so that the FDA and the Burzynski clinic can be sure that an out-patient has medical support in their region.  The UK Dr. keeps saying that they do not know anything about the treatment but at the same time they have not even contacted the clinic to try and determine what information and help would be provided to them and get in more specific terms what the UK Dr.'s responsibility would be.  The UK Drs keep talking about Burzynski pushing off responsibilities and risk onto them yet this is no different then other clinical trials being held with patients in divergent locations.  If only they would pick up the phone or contact via email to get more the specifics it might answer all of their questions instead of trying to get the answers from me.  At least then they can make an informed decision.  Obviously, there are other drs in the USA and in other countries who are willing and have supported parents decisions to try this alternative treatment and I don't hear of any lawsuits or other legal actions taking place - I have searched.  We have even stated that we are willing to sign waivers absolving responsibility should this treatment not work.  I still clearly remember the UK Drs words over the course of several initial meetings after Supatra's diagnosis...'we will do everything and try everything to help your daughter'; well how is palliative care helping when there may be a chance for longer survival on the antineoplastons? Their answer is... we would rather you get some quality of life with the remaining time your daughter has.  Yet, how is this different from chemotherapy for other cancer patients?  Do they withhold chemo because there is no guarantee for a cure so that parents can have quality time with their loved ones before they pass?  No, they jump on the chemo treatment even though with some chemos there are very strong adverse reactions to the patient which then requuires lengthy bed rest or even hospitalization - the vary thing they do not want for Supatra.  So how is this different then antineoplastons which by the way are not toxic and have limited side effects, each of which have been proven reversable in a very short period of time?  Oh I know, because Burzynski has not done a double blind study where he gives a placebo to one group, i.e. letting the patient die, while giving his antineoplastons to the other.  A real good test that one is.  If Supatra had to participate in one of these we would not even know which one she was taking and therefore not only be giving false hope to the parents but also letting the patient die.  No wonder Burzynski does not want to go down that route.  I would also like to say that I am also open to the idea that when patients seek out Burzynski's treatment usually as a last resort the patient is already trying various alternative medicines like being on an anti-cancer diet, taking various herbal medications, etc; just like Supatra is and that the combined anti-cancer supplements and treatments along with antineoplastons is what may actually be doing the trick in extending peoples lives and or curing them. In other words it is the synergy effect of being on multiple anti-cancer treatments that will probably have the biggest affect of stopping the tumour.

Apologies for the rant but needed to get that off my chest, in fact I would have a few more things to say but I do not want to burn my bridges with certain organizations. 

Tonight we will finish our packing and take it easy at home.  I hope we will have a nice relaxing time on the cruise as I know the hardest part is yet to come once Supatra starts her treatment in Houston.  I feel very anxious about this as I know we will have to be very patient with Supatra in explaining what we are going to do to her and that it is all about getting her better for the future.  Wish us luck......

Love and hugs to all

Sunday, 21 August 2011

21 August 2011

Yesderday, on 20 August we had our house warming and farewell party with close friends and I hope everyone had a good time.  It was very hectic for me and Punny as we prepared the house for our guests and Punny slaved away in the kitchen all day preparing loads of food - I kept telling her too much food!  Our first few guests assisted us in preparing the last few dishes and getting all the food out into the backyard gazebo.  There were lots of children, Supatra's friends which she and her brother enjoyed very much.  Both were exhausted by the time everyone left and Jason passed out on the sofa as we were still clearing up.  Supatra looked smashing in her new pink evening dress and she got to enjoy a few foods and snacks she has not been allowed to eat for some time.  I would like to specially thank Michelle, Chris and their Detox group for their generous donation towards Supatra's treatment costs and prior donations you have made in Supatra's name to the Samantha Dickson Brain Tumour Trust.  Some pictures of the event are below.

Now we will solely concentrate on getting everything ready for our trip to the USA and start putting things aside of items that we need to take with us.  Today I will take Supatra shopping and spend some one on one time with her.  Supatra continues to be off her steriods, about four weeks now and is still doing very well.  She does seem to be getting a little more unbalanced but not as much as she experienced the last time we had her off her meds.  This week we will really have to focus on her diet as we will not be able to juice nor make her Budwig meal while on the Queen Mary II.  We will ask whether the kitchen staff can do something for her when on board but we will not know until then. 

Thanks to everyone for your continued support.

12-19 August 2011

Well this has been a frustrating week or so in trying to make a decision on whether to go to the Burzynski clinic or not.  Last week it was a go and then a few days later we were not sure again as I read some questionable reports on Burzynski's treatment and I was still finding it difficult to find others posting about their expereince with the clinic and Antineoplastons.  I felt that if it was working so successfully then there would be alot more people touting its success. Then I found a couple of additional blogs on two kids that underwent the treatment; one lasting 13 months on the treatment before she sadly passed away and the other started at the age of three had his tumour shrink to a pea size blip on the scans.  He is now six but still on the treatment because the doctors do not know if the remaining element of his tumour is active or dead cells.  But even the mother of the child that passed away thought the treatment had merit and that it extended her daughters life.  In fact, she thinks her daughters tumour came back because she did not consistantly administer the antineoplastons in the latter part of the treatment which then allowed the tumour to regrow.  There was also a positive report on toxicity of antineoplastons by the Japanese that then swung our decision in favour of trying the Burzynski treatment. Me and Punny again felt that the doctors were not giving us anything else to hold out hope for and knew that what Supatra was experiencing now is referred to as the honeymoon period.  A period in which the tumour is in relatively stable condition probably due to the radiotherapy, diet and herbal medication we are giving her.  We are now very busy getting ready to depart on our transatlantic voyage on 29 Aug 11, finding a cheap flight to Houston and a place to live. 

The other thing that happened this weekis that we had our consult with one of the UK's leading doctors on DIPGs in London and he told us that in his opinion there was no more of a risk flying then there is not to with regard to the adverse affects on Supatra's tumour.  Surprise surprise!  So now that we can not cancel our cruise booking we have to continue with that part of the plan but are now looking at flying from New York to Houston, hopefully saving us some money in the process.  I don't know why Supatra's doctor thinks otherwise about DIPGs and flying.  I also read in the blogs that other parents of DIPG kids flew them to the Houston clinic as well and that one of them near the end of her daughters life flew her Disneyland with no adverse affects.  So if their kids can do it and the leading DIPG doctor in the UK says its OK then we are willing to take a chance.

The big worry for me now is whether or not the Burzynski clinic will be able to book Supatra's catheter insertion or whether we will have to wait until we get there and do it in person.  If the latter, it could delay her treatment for weeks.  Not only that but I only have a certain amount of vacation time that I can use as I am trying to keep some for later if and when I have to fly back to Houston to help Punny with the treatments.  The plan is to go togther as a family, get the treatment started, get trained in the administering of  the treatment and then Jason and I will return to the UK by air in late October to go back to work while Punny stays behind with Supatra and continues the treatment.  Then I would fly back in December to spend Christmas together and so on.  Of course we are still trying to make arrangements in the UK so that Supatra can return here to be with her friends and family while still on the antineoplaston treatment.  However, unless we can get a doctor to monitor the treatment we may not be able to do this and that would mean Punny and Supatra staying in the US indefinitely or until such time as the treatment is concluded.  Either way this is a big undertaking and we have alot to figure out and of course do once we arrive in Houston.  I am hopeful that the trip will go smoothly but worried about the first few weeks and months of treatment as that can be the worst for Supatra and the family.

I would also like to say thanks to all those at my work that are working hard on my family's behalf to get us the support we need.  I am lucky to have the the supervisors and friends I have at work and thank them for their fund raising efforts they have done and will do in the future on our behalf.   As well we have lots of friends within our community and they have been a great help with babysitting needs and fund raising as well. 

Friday, 19 August 2011

1-10 August 2011

Well not much has happened this week other then the preparations for our move.  We get packed and moved on the 4-5 August and then had a busy weekend unpacking and also cleaning our old place.  Luckily my company paid for the movers and packers and therefore we just needed to watch and do the odd bits.  The move went smoothly and Supatra continues to do remarkably well being off steriods for a little over two weeks now.

As of now we have decided to take Supatra to the Burzynski clinic in Houston Texas for treatment with Antineoplastons.  We feel that we have no other choice other then to watch her slowly die.  We booked a transatlantic one way cruise from Southhampton to New York and then from there we will rent a car and drive to Houston over a period of four days.  The total trip will take us jsut under two weeks.  Why go by ship?  Because the doctor told us that she could not and should not fly and that it was too dangerous.  We plan on turning this into a mini vacation for the kids because once we get down to the clinic we will need to start the process of preparing Supatra for the treatment and we already know that the first two months on this treatment can be very rough and uncomfortable for everyone.  I worry about Jason as I can already see here at home that he feels ignored and left out.  I hope this treatment at the minimum extends Supatras life by a few years - hopefully until another new conventional breakthrough happens in the treatment of DIPGs.

On 3 Aug 11, Supatra had another MRI scan to see what is happening with the tumour and we got the good news of stable disease.  However, we also know that this is still within the honeymoon period after radiotherapy and therefore we are keeping our fingers crosssed that she remains stable until well after we get to Houston to start her on the Antineoplastons.

July 2011

1-9 July 2011

We had an excellent time in Wales this week with lots of activities and places to see.  We want to a place called Glan-y-mor, Wales and stayed in one of these semi-permanent caravans by the coast.  Unfortunately it did not have a sandy beach but we made the best of it using the stones and building sand castles during low tide.  The Christian Lewis Trust also provided us with several day trip tickets such as to a petting zoo, Centre for Alternaive Technologies, and a steam train ride.  It was great to see mountains again (its very flat where we live) and drive through them on the twisting and winding roads.  Thanks Natalie for the use of your Satnav. 

Supatra has been off steriods for over two weeks now the longest since starting her steriod cycles.  She was doing really well until about the second or third day into our trip; then she started becoming much more weaker and unbalanced.  Her weakness in the limbs and instability continued to decline to the point where she was having difficulty standing up from the kneeling position but we consciously decided to keep her off the steriods as long as possible as we knew she was now dependent on them.  At least she was not complaining of headaches and pains!  We decided to try and keep her off the steriods until after the vacation which is what we did and she started back on a steriod cycle on 9 Jul 11.  Supatra and Jason were great through-out the trip.  Supatra, again not bothered by the sometimes cool and rainy weather just wanted to stay out as long as possible each day playing on the beach building a dam across this small stream that empties into the bay.  She is very determined and would try to pick-up all sizes of stones and rocks even though she would have trouble standing on the uneven rocky beach.  Gotta love her determination and strength - never complained about anything and always with a positive attitude.  Love you Supatra!




10-31 July 2011

I know I did not mention it earlier but when Supatra was diagnosed with her DIPG tumour I arranged to stay in the UK for one more year (we were due to move back to Canada this summer) in order to allow Supatra to be with the only friends she had ever known and so that we could be where our support network is.  We also got confirmation from our landlords that we could stay in our rental accommodations for one more year but in May they came back to us and told us that they were selling their home and that we had until 9 Aug 11 to find another place to live!  Great, I wanted stability for the sake of my daughter and now I had to waste valuable time and energy looking for another place to live.  Not happy.  Well we found a place just before our trip to Wales and between our return and the end of the month we strictly focused on staying close to home and preparing for our move. 

Good news is that we managed to wean Supatra off the steriods again in the last week of July and until 31 July she was doing really well.  She finished out the school year on 22 Jul 11 and made some small hand paintings that we framed for all the teachers which they really appreciated.  Supatra also had a class show back in June and she had drawn a beautiful picture of a sunflower.  Well, one of her teachers took it upon herself to have it framed for us and it proudly hangs on our sunroom wall.  Its a great picture and Supatra always was a very good drawer.....I hope to get her to do more of these.  In fact what I would love to do is write some kids books and get her to do all the stickman type of drawings as I think it would be unique and something we could always treasure.

Me and Punny continue to discuss the Burzynski Antineoplaston treatment and we made a decision to try it during our Wales trip.  After we came back I sent all the required info and they determined that Supatra could participate in the treatment outside of a clinical trial as they had recently completed Phase II trials and were trying to prepare for Phase III.  However, as we progressed through July we (mainly me) continued to have doubts about this clinic only because I found it very difficult to find people that had undergone this treatment and post or blog in detail about their experiences with the treatment.  I found this odd considering that according to the clinic hundreds of people have had a 'complete response' to the treatment.  I also read numerous articles by medical practicianers on why Antineoplastons don't/won't work.  It is very frustrating research as one day I would feel really good about the prospects because of something or several things I read and then a day or two later I would have my doubts because of something else I found.  To go or not to go is the question?

June 2011

1-15 June 2011

Well, unfortunately my diary on Supatra's condition ends in May and therefore between June and August I will have to rely on my memory.  Supatra continues to go to school and is doing very well although she continues with her symptoms of left facial palsy, some balance instability, occasional pains, and now being over-weight.  But through this all she has been in good spirits and looks forward to doing what she has always done, playing with her friends, enjoying outings, going shopping and playing with her brother.  We continue to be hopeful that the herbal medications we are giving her are having some positive affects and keeping the tumour from growing.

16-30 June 2011

On 15-17 Jun 11, we went camping again with our family friends.  We were a little more prepared this time but again the weather failed us and it rained pretty hard the first night into the next day.  Of course Supatra, Jason and the other children did not mind and they had a blast running around and again roastig marshmellows on the fire.  Natalie and Dave made some excellent Pimms as usual.  We also went to some of the local coastal towns to spend some time on the beach.  Me and Punny always feel very tired after these so called weekend get-aways! 

During this time we also got confirmation of a vacation break in Wales donated by the Christian Lewis Trust which we are really excited about as we have wanted to go to Wales for some time now and just never got around to it.  Our trip is to take place the first week of July and I hope it will be nice and relaxing for all of us.  Around mid-June my mother also told me about the Burzynski clinic and this movie that I should watch about him.  I watched the movie and found it interesting but I also dismissed it as a propganda piece.  However, because there were testimonials that were so convincing I decided to look further into it.  Me and Punny discussed the issue for several days and while she jumped at the possibility of this being something we should try for Supatra I was still not so sure after I read further info on the web questioning Burzynski's methodology and treatment by other medical professionals.  But I kept looking into it and trying to find personal stories of peoples trials and tribulations on this antineoplaston treatment hoping that this would provide a truer picture of whether it was a scam or not.

May 2011

1-7 May 2011

Supatra continues on steriods although we are near the end of her cycle and almost finished weaning her off.  Her tiredness is coming back and can not walk more than a few hundred meters before wanting to sit down.  Her left eye also continues to bother her as she can no longer properly close her eyelid which results in a dry eye.  We continue to actively try and restrict her calorie intake but she continues to increase in weight.  We are starting to think that as we wean her off the steriods that some of the symptoms might be psychological rather than tumour related and that she is now dependent on it.

On 3 and 4th May 11 we went to London with two other families and their kids and had a lovely time visiting the London Aquerium, having dinner at the Rain Forest Restaurant and cruising the Thames River.  The kids really enjoyed themselves and Supatra was great especially with her brother Jason whom she helped to look after.


27-30 May 2011

Well Supatra has managed to stay off steriods for a full week but as of today we decided to put her back on as her instability became really bad and included weakness in her limbs.  There was also a little shakyness to her limbs and what is very noticable is her going up the stairs at home.  When on steriods she can climb the stairs with little aid of using her hands for support but off the steriods for more than a few days and she will need to lean forward and almost crawl up the stairs on all fours.  On 28 May 11, Supatra also complained of pain in her left eye, headaches and fuzzy vision.  On 30 May 11, with our regular doctors visit we asked if Supatra could get an eye patch to help alleviate her discomfort and they gave her some eye bandages that you can wear and then remove as needed.  They come in different colors and patterns and Supatra really liked this.

April 2011

1-8 April 2011

Over the past week Supatra has been doing very well and we have weaned her to a low 1ml steriod dose per day over the past few weeks.  Each of these steriod cycles takes about 3-4 weeks depending on how she is doing.  On 8th Apr 11 we stopped the steriods but later at supper she loudly complained of a headache at both the back and front of her head as well stating that she had these headaches at school today.  Worried, we immediately put her back on a low dose of steriods and decided that we would try to stop the dosages in a few days time.  Again, I get this feeling that the tumour is still growing.

UK Charities

I have been remiss for not writting about the various UK charities out there for cancer families.  Early after diagnosis we were introduced to a CLIC Sargent worker and she ran us through some of the available help that is provided by a whole slew of charities, some small some big.  The CLIC Sargent rep offered to apply for a grant to help with expenses and told us of other charities that do the same plus those that offer wishes to the children and vacation breaks to the families.  I felt uneasy about accepting any money but in the and we did and it certainly came in handy.  It surprised me and Punny how quickly things started adding up.  Change of diet and our food bills significantly rose.  Need to juice and blend and we had to get the appliances.  New clothes for Supatra as after March nothing in her closet fit her anymore, etc , etc.  The biggest impact though came from the Round Table Children's Wish Foundation when they granted Supatra her Disney Paris trip wish.  Not only did they pay for everything but they also provided a generous amount of spending money.  Our big trip was going to be on 19-22 April.  There are others as well which will get mentioned later but I just think they are providing a great service to cancer families and make a huge difference.  I will certainly not forget their generousity.

9-15 April 2011

On 9 Apr 11, Supatra complained of not being able to open her mouth very well.  I thought it might have something to do with the weight she was putting on but to be safe decided to increase her steriod dose to 1.5ml the next day.  On 10 Apr 11, Supatra complained of pain in the mid section of her back and this lasted for 40-50 mins but the rest of the day she felt better.  On 13-15 Apr 11 we went camping with several friends of ours and their kids.  It was rather cool but Supatra has always wanted to go camping and roast some marshmellows; she's really been looking forward to this trip.  We had a great time although it rained off and on.  We went crab fishing and took a steam train ride and sat around a camp fire.  Through it all Supatra never complained once even though the adults - me included - complained about the cold weather.  I was really impressed by her attitude and and stalwartness as even when it rained she continued to sit outside around the fire!

16-22 April 2011

Supatra has been doing well this week and she has been really excited about the trip to Disney Paris on 19 Apr 11.   Although we have already had Supatra on a very low dose of steriods for some time we have decided to keep her on it until after the trip to Paris.  On 16 April, Supatra had her follow-up MRI to see what affect the radiotherapy had on her tumour.  It was good news in that the tumour shrank quite a bit but there was also a residual shadow around the remaining tumour and the doctors did not know how to interpret this.  It was either dead tumour cells or something else.  On 18 Apr 11, we went to London to stay over night in a hotel in preparation for our early morning departure on the Eurostar train to Disney Paris.  On 19 Apr 11, we departed London for Disney paris and had a great time on the train.  The train is surprisingly fast and within approx. 3 hrs we were at Disney Paris.  Supatra got a ViP pass with very special privelages.  We managed to get on a number of rides the first day after arrival and on the second day Supatra was personally escorted to meet all the Disney princesses and got to speak with them and get their autographs.  On the third day we had a Disney character breakfast and she got to meet all the main characters.  Of course she wanted a princess dress and a bunch of other souvenirs which we happily bought for her.  We had a great time thanks to the Round Table Make A Wish Foundation!



23-30 April 2011

Supatra continues to do OK and continues to add significant weight even though we are trying to control her eating.  She is feeling slightly more tired and lethargic but this could be and is likely to be an affect of stopping her steriods.  On 25 Apr 11, Punny decided to put her back on the steriods as Supatra was not getting any better.  Her balance has gotten worse and her left facial palsy is also more accentuated.  We continue to worry and do more research into alternative therapies and conventional treatments.  However, I am getting tired of all the negative answers from the doctor with regards to all the conventional treatments, trials, and up and coming promising drugs that I raise with her.  In february the dietician never even talked to us about healthy foods, staying away from sugars, and what anticancer foods to eat.  I just shake my head thinking about how they have been at this disease for decades and decades yet they still don't think about combining numerous treatments including alternative and complimentary treatments to together to attack the problem.  Its all about trying one thing and if it doesn't work move on to try something else or in the case of Diffuse Intrinsic Pontine Gliomas just giving up after radiotherapy.  Everything we have done with Supatra's diet and herbal medications has been through our hard work and steep learning curve instead of it coming from either the doctors, who by the way should have nothing to lose in recommending complimentary treatments, or from someone like the dietician. It just pisses me off that they just seem to willy nilly dismiss what could be very beneficial in extending someones life.

March 2011

As Supatra's radiotherapy progressed into the last few weeks her skin in and around her ears started to get really red and she started to experience hair loss above and behind her ears.  Luckily the hair loss would only occur in and around where the radiotherapy was being aimed at the side of her head and that the hair nearer to the top would cover up the bald spots.  Both me and Punny are of course stressed out and Punny has had a rough couple of weeks dealing with Supatra's illness.  Supatra also started throwing up on occasion but we were not sure if this was due to the radiotherapy (likely) or the Thai herbal medication.  She also complained of the occasional headaches and aches at various places throughout her body.  The good thing was that the headaches didn't really seem to bother her that much as it was usually told to me after the fact.  Everyday I would come home and ask how she is feeling and she would take this opportunity to tell me of all the aches and pains she has had throughout the day.  When we told the specialist nurse about what was happening they discussed it with the doctor and decided to schedule a CT scan to see what might be happening with Supatra's tumour.  On 8 Mar 11, Supatra went for a scan and had to spend most of the day there preparing and waiting for it.  Supatra was great though compared to her very first CT scan and made no fuss about it and laid perfectly still throughout the procedure...of course they gave her a pin button for it and true to form she insisted that she be able to take one for her brother as well.  What a great sister she is!  Good news was that the scan showed nothing wrong.

By 10 Mar 11, Supatra continued to throw up on occasion and feel rather poorly and is likely due to the radiotherapy.  I also noticed over the last week that she was having trouble remembering simple things and she was not as sharp as she usually is and would reapedly ask the same questions for days in a row.  By 14-15 Mar 11 Supatra was feeling better again and in order to encourage her to eat more and get her strength back we allowed some sweeter foods into her diet.  Of course since diagnosis we have been trying to eliminate sugars and other known bad foods and replace them with healthier anticancer foods.

I did keep a loose diary of events on Supatra and I think from this point forward until I catch up to the present day I will date each here it goes:

15 March 2011

Supatra stayed home from school today because of an upset stomach.  In the evening she also through a tantrum at Jason because he changed her TV channel which is very unusual for her to do.  She seems to be a little more stressed lately, of course understandably so but I also blame myself for this as it is still difficult to get her to try new healthy foods and take her many pills and I guess I am not as patient with her as I should be.  I also kick myself afterwards when I lose my patience and feel that I am a terrible father......I love Supatra so much it just breaks my heart ever time I have to raise my voice to her knowing that she has a terrible illness and we only have a limited time together.

17-18 March 2011

After work today, Punny told me that Supatra complained about not being able to chew her food very well because she can not roll the food around in her mouth with her tongue.  This seems to be another indication of her symptoms coming back as her doctor had told us it might as part of the radiotherapy reaction.  At this point I am very concerned that the radiotherapy is not having the desired affect on the tumour.  Supatra also complained of her left eye feeling strange with blury and double vision.

19-24 March 2011

Supatra continued to complain about her left eye and various aches and pains over these six days.  I had an intersting conversation with Supatra's head teacher on 23 Mar 11 because the previous day Supatra had mentioned to one of the teachers that 'her lump was killing her' and of course this freaked out the teacher somewhat.  I tried to explain that I did not tell her that and that I would not have chosen those words; at first being quite dumbfounded at Supatra's remarks.  However, upon further reflection I did remember talking to Supatra on several occasions in February about the seriousness of her lump and had to be more up front with her in the hope I could convince her to take the herbal medications we were giving her.  I felt really bad about this and knew I had to talk to her about it again to make sure that she understood what I had originally told her which was that some lumps can grow and result in people going to heaven.  To this day she has not spoke of it again but I continue to wonder if she really knows the seriousness of what she has and whether I was too honest with her.  I found it really hard to talk to her about her condition when she would ask about her lump as she would ask more and more probing questions and when I try to sugar coat my answers she would say 'but why' or 'that doesn't make sense'.

On 24 Mar 11, we had our weekly follow-up appointment with the doctor and told her all about the symptoms she has had.  The doctor did not leave me with a good feeling as she thought that the radiotherapy might not be working either.  She told us to continue with the steriods and suggested that she might need to stay on the steriods longer term.   I was not happy and was feeling crappy, worried about my little angel.  I decided not to go back to work and we all went to the park instead and had a good time together.

26-31 March 2011

On 26 Mar 11, me, my mom, Jason, Supatra and her best friend Isabelle went to a small local zoo and spent the day running around.  It was a good day and everyone had fun.  On 27 Mar 11, Supatra attended a friends birthday party and then went to the park with Isabelle's family.  Although it was a busy two days my sadness and feeling of depression came back and I couldn't help but think of the inevitable.  I just don't know how I will cope without Supatra being here.  I have noticed over the last few days that Supatra always seems deep in thought and not very happy.  I tried to talk to her a number of times to see if something was on her mind thinking that she might be starting to grasp the seriousness of her condition but she always said everything is fine!   I feel so bad.....

Hurray! Its 29 Mar 11 and it is Supatra's sixth birthday!  We celebrated at home with a few kids and the family as we could only book the brithday party entertainment for the 2nd Apr and that is when we are having her main party.  Supatra does not mind waiting as she gets two cakes instead of one!!  I think Supatra invited her whole class to her party and we had a good turn out.  I also blew up a couple hundred pink balloons!

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 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!