Supatra's Last Days

I think it is well known by now that sadly Supatra passed away on 5 Jun 12 at home and surrounded by her family.  We are still in shock and can not believe that Supatra is gone after seemingly being still alright only a few days previous to her death.  We are finding it difficult to carry on and the day of her passing the house, our lives, and our hearts already seemed so empty.  Tomorrow it will be two weeks since her passing and we don't know what to do with ourselves but I thought that today I would try to write this diary entry while memories of the last few weeks of Supatra's life are still fresh in my mind.  I want to do this as I think it is important for other parents who are currently caring for a loved one with DIPG to know how things progressed, what we could or should have done better, and importantly to recognize the signs of death; although it should be noted that everyone passes on in their own way and it will never be exactly the same.  This will be and is very hard for me to write.
 

On 12 May 12, me and Punny decided that it was time we try to take Supatra off steroids again as she seemed to be getting weaker and weaker and suspected it was the steroids wrecking her muscles.  We knew from her last MRI scan that the tumour was still stable and so we thought that it must be her long term steroid use that was affecting her adversely.  We felt that should she get worse (i.e. weaker) off the steroids like she did in June/July 2011, we could always put her back on and fix the withdrawal problems.  This is what happened last summer and every other time we tried to wean her off.  After only about 2.5-3 weeks off the steroids Supatra became so weak that she could no longer pick herself up off the floor and we put her back on steroids in early July 2011.  It was a large pulse dose regimen followed by a slow weaning off process which was again accomplished by late July 2011.  After this Supatra was steroid free until she needed to go back on in late September 2011 after starting her experimental antineoplaston treatment, and even then it was at a very small 1.25ml dose per day.  Why am I telling you this? Because we were using this experience to guide us in our decision making process this last month.  We knew the steroids were negatively affecting Supatra's body and so we felt that we should try to improve her physical condition by weaning her off the drug, again knowing that we could always put her back on with a relatively high pulse dose to fix any complications.   We also knew that there was always a possibility that the drug could stop working on her but it always succeeded before over the last year and a half.

 

At first Supatra seemed OK, but she was still having bouts of sleepiness and still getting weaker but it was not at an alarming pace nor stage where it was overly concerning us.  By 18 May 12, Supatra complained a few times of pain in her knee and was not communicating as well.  The pains were not new as she has experienced these throughout her illness on various occasions and would usually only last a few minutes at a time.  The slower speech though was worrying us and combined with her weakness, (although telling ourselves it was because of the steroids) we starting thinking that it may also be tumour progression.  Since Supatra started on the antineoplaston treatment I have been keeping a medical log of general observations and other details about dosages and so on but during this first week off steroids I had only made one entry because in general there was not much to report; however, thinking back, I think it was just that changes and events were so minor that I did not feel it necessary to record them.  I wish I had of been more attentive and diligent as it would have helped us now in trying to determine what happened and if we did anything wrong or missed something. 

 

Between 22-24 May 12 we traveled to the Norwich coast and spent a wonderful three days at a friends cottage.  Supatra was still becoming a little more tired and for the last week I was starting to have to lift her into the car and carry her up and down the stairs at home.  What I should also mention is that over the course of about 3-4 weeks Supatra also started to become more nauseous while on the antineoplaston infusions and especially if we tried to feed her while she was being infused.  At around the same time as taking her off steroids Punny started to try and feed her in between the infusions but even then in the latter weeks she would vomit on occasion when not on her dose.  At no point during these nauseous moments did she complain of any other symptoms and each time it was shortly after either eating or drinking a lot of water and therefore felt it was a result of one of those two things.  The problem was that we had fixed times when we could administer all her other medications and supplements and by early May it was becoming more and more difficult to stay on schedule and give her all the medications and supplements she needed.  By the time we returned from our Norwich trip it was beginning to be very difficult to administer all the pills and liquid supplements.  Each one of these medications needed to be taken either before, during or after food and the majority had to be taken several times a day.  Each time Supatra vomited it would set this schedule in disarray as we would then have to wait for her stomach to settle before feeding her small amounts of food, followed by all her pills and syringes filled with supplements.  She was still a fighter up until the day before she died and could still take two pills at a time and shoot the syringes into her mouth on her own with little help.  However, by the 24th May we knew that something was not right and we started discussing our options with regard to asking my employers to delay our move back to Canada.  At this time we were still of the mind that it was the high dose of antineoplaston that was causing her tiredness and a combination of being a long term steroid user and now the withdrawal of the steroids causing her ever growing weakness.  Other symptoms of note over the two weeks or so from the 24th May was that her left eye lid stopped blinking as much as before and becoming a little worse then it was when she was first diagnosed in January 2011.  Her left eye was also not tracking as well with her right. Yet, on the 24th May, although mostly in her push-chair, she did get up and about while we were at the Bewilderment Park and even tried the balance beam and hanging between two ropes.  But the next day she seemed really exhausted and could not walk more then a few assisted steps and I was required to carry her to and from the bathroom.  I also noticed that she had less ability to hold her upper body up when sitting on the toilet.  The Houston clinic also suggested running some additional blood tests as Supatra's haemoglobin (HG) was starting to drop over the last week.  This drop in HG was experienced before and therefore we were not worried about this at this point as her HG had been bouncing up and down for months now.

 

By 27 May, I noted that Supatra continued to get more and more tired and was vomiting almost on a daily basis although she still had some seemingly good days of no nausea.  On Monday 28 May 12, one week before she passed away, Supatra woke up more perky then usual, got out of bed on her own and started doing a dancing jig trying to make me and Jason laugh...always trying to make us laugh, that was my Supatra.  But a few hours later she was tired again.  By 29 May, Supatra was sleeping for most parts of the day and needed assistance with everything but she was still able to sit up or lean up on one elbow to take in fluids and her medications.  At this point we were so close to her scheduled MRI scan that we decided to wait to see what the scan showed before deciding about whether or not to put her back on steroids.  We had now made the decision to request an extension to stay in the UK thinking that we could not have Supatra pass away while we were living in a hotel, but I needed to wait until my supervisor was back from a trip before submitting a formal request.  Something told Punny and me that Supatra was getting worse and although we still had great hope, we also felt that she may not be with us much longer although thinking in months not days.  On 30th May, we had a regular scheduled oncologist appointment followed by her MRI scan.  The 30th of May did not look to be a good day for Supatra as she was overly tired and slept through the appointment barely having enough energy to open her eyes nor speak for the doctor.  We discussed with the doctor about putting Supatra back on a pulse dose of steroids and she agreed and it was decided to put her back on at 2 x 5ml/day for a few days then followed by a controlled weaning down period.  After all her medical appointments that day we took her to her school to at least see a part of the afternoon Queen's Jubilee celebrations.  Normally, when at school and around her many friends she would demand to get out of the pushchair and be amongst them but that day she did not although she was awake.  That evening we got the bad news that the scan had shown a possible secondary cancerous lesion in the dorsal area of the Pons but that her main Pons tumour looked the same as previously.  We felt so devastated again but were still hopeful that maybe the Houston clinic's interpretation would be different.  In the back of my mind though I felt this would likely mean the worst.  Supatra seemed to perk up in the evening and in the middle of the night was awake and talkative something that was a fairly regular occurrence in the past and knowing she just went back on the steroids knew it was the drug that was giving her this mid-night boost.  On Thursday 31st May though, Supatra's symptoms did not change and she continued to be tired and very weak.  I also noticed that her speech was even slower taking 10-20 seconds to sometimes react to our questions and then mostly answering in one syllable words, whispering no and yes to our questions.  At this point we had to help her everywhere and we have this little potty chair that sits next to her bed and over these last few days downstairs when she is on the sofa so that she does not have to move far to go and wee.  But at this point she even needed help with this and on occasions could only stand by making her legs stiff.  Her ability to sit on the potty or loo on her own was now pretty much gone as she could noticeably no longer support her upper body.  We thought that it must be the new lesion in the Pons that was maybe pushing on her cerebellum and affecting her ability to move.

 

Its a really strange situation to be in as me and Punny were going off previous experiences with her symptoms.  Looking back it was clear that Supatra was deteriorating but at any given moment during these last few days with her we were still of the belief that she would keep fighting and that she would level-out so to speak.  At no time did I feel she was about to leave us in a matter of days.  She still had her perky moments and we still had conversations although more difficult now, she still took her medications when she was not nauseous - we just did not see it coming and we are consumed with guilt that we did not make more of the last few moments we had with her.  How could we have missed all these symptoms?  Why did we not reduce or completely take Supatra off the antineoplaston treatment to give her body a break? 

 

Friday, 2nd June was a terrible day in that we had left her on the sofa as we usually did and while we were busy cleaning up and preparing the next meal Supatra tried to get up and go to the washroom on her own but fell to the floor after only a few steps.  I heard some muffled cry and so walked out to the living room to find her sprawled out on the floor and trying to cry but not really making much of a sound.  I immediately picked her up after making sure she did not seriously hurt herself and calmed her down asking what happened.  Supatra stated that her back and legs gave out and that she now had a sore lower back.  I made her comfortable and stayed with her for some time and warned Punny that we now had to be with her constantly and if that was not possible to check on her every 5-10 mins.  I felt so bad for Supatra and guilty not knowing how long she may have been lying there.  Later that night we had a social engagement with the kids and that evening Supatra had what seemed like another seizure in her brain as she told us she was seeing things and her sight was jerky with people around her moving in a funny way.  It took us several hours to calm her down to the point where she seemed OK again but she did pee without giving any indication she was about to.  This is something she also did twice on the 31st May although we thought nothing of it - we just thought it was because Supatra could not communicate quickly enough with us.  In hindsight, this was another serious indication that her body was starting to let go - incontinence. 

 

Although knowing she was more poorly, up to this point we still had our blinders on to the fact that she may be in the beginning stages of death.  The following Sunday, 3rd June Supatra had some more bad moments in the morning.  First, she did manage to move off the bed and support herself to throw up into her potty but made a bit of a mess.  Punny was downstairs preparing breakfast and her medications while I was still snoozing with Jason.  Something just told me to check on Supatra and that is when I noticed the vomit and mess.  I called Punny to help me clean up while making sure Supatra was back in bed in a comfortable position and that she was not still feeling sick.  She indicated that she was OK now and we let her rest.  I came back to her room about 5-10 mins later and Supatra was lying on the floor having defecated on herself.  Another moment of shear panic and guilt that she was left alone even for a few minutes and left in such a state.  We cleaned her up, cleaned up the room and made her comfortable on the bed again.  This time we stayed with her and tried to tell her that everything would be OK and that we loved her.  I thought it was just her missing the toilet and not being able to hold herself up but again in hindsight it was another clear indication that she could no longer control her bowel movements.  Supatra was still in remarkably good spirits and did not complain of her lack of ability to move nor of anything else.  Then after having some food and her medications she just vomited again all over the bed and herself without warning.  Again, we thought it might have been because of the water and food consumption like so many times before and it certainly did not look like projectile vomiting, which is an indicator of pressure on the brain.  However, in hindsight this was a last clear warning that something was not right and our last real opportunity to do something that could have possibly extended her life that much longer - how long?  We do not know but maybe another week or two??  We should have known, we should have taken her off the antineoplastons, we should have increased her steroids....why we did not see it is beyond us and we are killing ourselves trying to come to terms with this guilt that somehow we let our little girl down.

 

For the rest of that Sunday we made Supatra comfortable downstairs on the living room sofa where she spent a lot of time so that she could be around Jason and watch her favourite cartoon shows.  I stayed by her most of the day trying to communicate with her asking if she was alright and trying to have her take her medications which she did manage to do.  She managed to swallow the pills and take her oral syringes of potassium, iron, and steroids.  Later I also fed her and she was still able to chew albeit slowly and swallow.  She did not talk to me but was attentive and gave me yes and no answers to my questions although at times she seemed spaced out.  Later in the afternoon when I thought she had layed around much too long I asked if she wanted to go out in the garden and see the flowers that were blooming.  She said yes and so I got her dressed into some warm clothes and carried her in my arms around the garden pointing out all the flowers.  She felt lifeless in my arms and only managed a few yes's when I would ask if she could see the flowers I was pointing at.  Our beautiful moment together was cut short when it started to rain and she indicated she wanted to go back inside.  I wish I could live those moments over again.

 

As I think back to this last weekend and the following Monday of Supatra's life it all seems a blur to me.  We should have seen the seriousness of her condition but did not although we were very worried we just felt she would fight through this rough time.  It was Punny's turn to sleep with Supatra on Sunday/Monday night and she tells me that Supatra woke up as usual in the middle of the night and although most of her words were unintelligible she did clearly say 'mommy, I love you' as if knowing this was her last chance to say something.  The next morning, Punny tells me she was seemingly OK.  I had to go in to work to start the process of requesting a delay in my posting and went to see Supatra before I left the house to see if she was OK and to say good-bye.  Although awake and looking at me she did not respond to my good-bye.  I told her I would be home early to be with her.  It was the last communication I had with Supatra where I was sure she understood and heard me.  Another huge burden of guilt as I should have known things were not good with Supatra and should have stayed home with her, to provide Punny that extra support, to be by Supatra's side.  That Monday, 4th June was a rough day for Punny and Supatra.  Supatra had another bout of nausea and although managing some food and medicine she vomited and had a bowel release at the same time at about 11am.  Punny was of course very busy trying to clean Supatra up and the mess left behind.  Luckily she had called a friend to come over and she was already there to help.  Punny also managed to get another 5ml steroid dose into Supatra which she kept down and so when she went to sleep shortly after this incident, Punny thought nothing of it and thought she would just sleep for an hour or so like she has been doing so for so many weeks now.  But Supatra was not to wake up again and seemed in a half comatose state with her eyes half closed and staring forward, breathing slightly more laboured, not moving nor speaking.   I had no idea what was happening as I was at work but after speaking with our friend on the phone and her telling me that Supatra was just sleeping all the time and not communicating I felt something was not right and came home shortly thereafter.  When I saw Supatra, I knew she was not in a good way and took her off the antineoplaston treatment.  Punny assured me that she had some fluids and a full 5ml steroid dose around 12-1230 after being sick and so felt that there was no need for a Decadron injection at this point.  After about an hour of being with Supatra and watching her breathing I knew she was in serious trouble and ready to pass away but was indecisive on whether we should give her a Decadron injection or not.  This needs some explaining as some may say why didn't you just do it?  Well, the last time we gave her an injection on the advice of her American doctors she had a bad reaction and we think was a significant factor in causing her brain seizures that she had in November 2011.  After these seizures she was off the antineoplaston treatment for some time and we had to restart her treatment from square one.  After this lengthy period of getting her back up near her target dose over a two month period her scan on 1 Feb 12 showed a small increase in tumour size.  So, when I discussed whether we should give her an injection at this point we also did not want her to go into a seizure and in this case make her much more uncomfortable.  We decided that we would wait for another hour or so as we felt could give this injection at anytime and instead called in the True Colours Team nurses to assess Supatra's condition while sending off a message to the Houston clinic for their advice.  When the nurse arrived about an hour later (now around 1630-1700) she thought it was Supatra's last moments and told us that she could go at anytime.  We discussed the advantages of giving her a steroid injection but she thought this might cause Supatra more discomfort and that it would not help her anymore.  Shortly thereafter I received word the US doctors and they suggested giving Supatra a 4ml injection of Decadron at around 1800hrs.  We just did not know what to do and were indecisive on the treatment.  In my mind Supatra was already on her way as she had now been in this comatose state for about six hours, had released all her bowel movements and was only managing to swallow once in a while as if by reflex. On one hand it might be what Supatra needs to release her from this comatose state that she was now in or it could put her into a seizure and cause her other problems, maybe even speeding up the dying process.  In the end, we decided against the Decadron injection as the nurse felt that the 5ml steroid dose given earlier would have improved her condition if it was to work but it did not and therefore giving her an injection now would not do anything to help her at this point.  We were fraught with despair as to what was happening with Supatra and we comforted her as much as possible during these last hours, telling her we loved her, kissing her, caressing her and helping her move into different positions that would help her keep her airway as clear as possible.  By around 1900-2000hrs her breathing was a little more laboured and mucus was starting to build in the back of her throat that made it her breathing sound a lot worse.  Late in the evening she also developed a fever and we managed to have her swallow a few tea spoons of water and some Ibuprofen for her fever but these were only swallowing reflexes and I believe she was already gone.  I hope beyond hope that she was still able to feel us and hear us as we continued to hug, lay wih her, and talk to her.  I got to spend the last night with her and in the morning at around 0700 seeing that her fever was back, at one point her eyes flickered up and down, and that her breathing was now much more laboured, got Punny to see her one last time.  At 0827, Supatra took her last breath and died in my arms at 0829.

My grief....our grief is insurmountable and we still think about the last few days over and over trying to determine, to think whether we did something wrong or could have been more perceptive as to what was happening with Supatra over these last two weeks of her life.  Both me and Punny feel so guilty for not spending more time with Supatra during her last few days, for not taking her off the antineoplaston treatment a few days earlier, for not giving her the steroid injection on the Monday afternoon.  In our hearts we know she could have survived longer - maybe not too much longer but longer for sure had we done any of these things.  I don't know if we can get over our grief and move on, I don't know if we deserve to.  Because of our inattentiveness our Supatra is now gone when in hindsight she might still be with us today holding on.  Are we being unfair to ourselves?  Everyone says so but the words are just not helping knowing that our Supatra is gone forever never to be replaced, having our hearts broken forever, having made Supatra suffer for so long, having gone to work the last day she was with us, not having taken some extra moments with her while she was still able to understand so that I could make sure that she knew how much I loved her..........my Supatra, my first born, my only daughter.....gone forever

 Love you Supatra, take care, watch over us

Love Daddy, Mommy and Jason

15 May 12

Hello Everyone,

Again, it has been some time in between posts but there are reasons for that.  First, Supatra’s condition nor  treatment plan is changing much and therefore there is less to update you with.  Second, it is becoming more difficult to find the time to write and keep everyone updated on all the activities we are doing.  We are keeping busy and I could post more regularly with shorter updates as to our activities but finding the time is difficult.  Today I would like to provide a short update on Supatra followed by some important news that not everyone may be aware of.

Since my last update Supatra has remained generally the same health and symptom wise.  Supatra reached her ANP target dose several weeks ago and since then she has become more lethargic and tired which is a known side effect of the ANP treatment.   It is the same symptom she developed about a week after reaching her target dose back in Houston in October.  The good news is that she still has her energetic moments and when engaged in activity that she finds interesting and exciting she can still get herself involved and physically active.  Of course her tiredness really kicks in when she is on her infusions and then gets better during her off times.  Punny continues to take her to school a couple times a week for a few hours each time and we try to either bring her to visit her friends or have them come to our house.  A few weeks ago we had a week long break in Devonshire at the Buckfast Abbey which was provided to us by the Torbay Holiday Helpers Network (THHN).  It was a wonderful time and Supatra and Jason got to spend a few days on the beach although one of those days it was rather cold for Supatra.  We also enjoyed the scenery, caves, and Pennyville Farm.  Supatra managed to ride a pony albeit with a little help and drive her first (electric) car around a track by herself.  Jason also rode an electric quad bike by himself and had fun crashing into things.  We would like to thank everyone at the THHN and especially Mr. Luke Tillen who made it all happen.  All our needs were provided for by local businesses including our accommodations, food, and fees for some of the local attractions.  On the way to Buckfast Abbey we also took the opportunity to meet our friends the Bainbridges’ and have an opportunity for Supatra to see Billie again as the last time they met was in Houston in October 2011.  We also stopped in to see Richard and Chantal, parents of little Amelia who was recently diagnosed with a DIPG tumour and is also undergoing ANP treatment.  We thank them both for their hospitality and wish Amelia and Billie all the best in their battle to beat this disease.

The big news for everyone is that we will be moving back to our home country – Canada in late June of this year.  My employment in the UK was always intended to be temporary and we were lucky enough to get extended for another year when my replacement was not able to come and then get extended again this last year due to more unfortunate circumstances.  We have really enjoyed our time in the UK, for me both at my work and for us as a family because of all the great friends we have made.  Unfortunately, our journey will take us to a new city where we have no friends and I only have a few work acquaintances, so it will be a very difficult move especially for Punny and Supatra.  I think Jason will be fine as long as he has his toy cars and Thomas the train set, all will be good.  But Supatra will miss her school and her many friends terribly and we will have to work hard at getting her settled into her new surroundings and into a new school.  Punny, will also be hard hit as she has so many friends here in the Cambridge area that it will be very hard to match this network of support in Ottawa.  The weeks are flying by fast and it will soon be time for us to hold our farewell party, try to fit in another short vacation in the UK and try a few more fundraisers.  We will be holding a group car boot sale scheduled for the last weekend in May, I believe on Saturday 26 May at the Oakington village site.  We will have lots to sell including some of our UK electric equipment and gadgets that we cannot take with us – so please come out and by some quality used stuff.  I will also still be participating in the London Nightrider cycling event on 9-10^th June with 11 others to raise money for Supatra.  You can donate at our team justgiving link found here:  http://www.justgiving.com/molesworthnightriderteam  This event will see upwards of 3000 cyclists riding 100km through London’s streets throughout the night of 9-10 June.  A big event and I hope we will raise some significant money for Supatra’s treatment all of which will be deposited with the Joseph Foote Fundraising Trust (JFFT) which has recently merged with Brain Cancer UK.  What Supatra does not use for her treatment will stay with the charity for research use in the UK.

It will be difficult for us to continue the momentum of our fundraising efforts, at least initially and so I hope that all of you in the UK will continue to spread the word and encourage others to raise funds on our behalf for Supatra’s treatment.  Once in Canada we will have to make some changes to the Paypal donation button but will keep the Virginmoneygiving link as funds raised in the UK will still get deposited into the JFFT account and earmarked for Supatra’s treatment costs.  Over the longer term I hope to find another charity, trust or foundation in Canada that will support us as the JFFT has done over the last year.  This is a great thing that they have done for us and a few other families, in order to help us raise funds more easily and under circumstances where the donor can be assured the money is spent on precisely what it is meant to be spent on.

I  have also had a ‘Treatment’ page added to this blog where I will outline in detail all the treatments Supatra has undergone, the treatments she is currently on, and the dates when she started them.  I hope this will make it easier for those parents of newly diagnosed children with brain tumours to find out what we have done and what we are doing to try and save our daughter.  This page should be populated by 23^rd May or earlier.

Best wishes to all,

Jorg

26 Apr 12

Hello Everyone,

Well, two weeks have gone by since my last post but really there is not much to say nor report....which is a very good thing!  Supatra is doing as well as can be expected and continues her good fight against this ghastly disease.  She is still a little unstable and walks with a slightly wider gait then several months ago; she is also a little weaker muscle wise but not more so then I last mentioned it; and her speech is slow as well.  However, other than these issues and her ever present left facial palsy she continues to do very well and its even more remarkable considering we were told that it would be wise to mark her birthday and Christmas early back in 2011 after her diagnosis.  She continues to be in good spirits, laughs and makes jokes and just simply carries on day to day.  I sometimes sit back and think about all she has been through and the small number of times she has complained or talked about how difficult things are and it just amazes me.  In fact, I have probably complained more to Punny and Punny to me about how difficult things are in our day to day lives then Supatra has about her condition and all the stuff we have put her through.  It just amazes me and sometimes shames me to think that this little girl is being more at ease about the whole thing then me or even Punny.  Of course part of this is the added burden of us knowing the diagnosis and prognosis whereas Supatra only knows that she has a cancerous tumour without knowing the whole truth.  She knows its bad though as we have had to have some heart to heart chats in the past about what is happening and why she needs to take all these different medications and have the constant infusions but she certainly does not know everything.  I just pray, pray, pray that her body will start to fight this tumour on its own with the added aid of the drugs we are giving her.  She has always had a seemingly weak immune system and we are hoping that with time and age her full immune system will kick in.  In the mean time 'stable disease' is what we hope for at the minimum.

Earlier this week we also took an additional extensive blood and urine sample for a comprehensive testing to see if there may be other underlying issues in her body that might be hindering her immune system or hindering the healing process.  We should know the results within about three weeks and hope that it will tell us something - at least something we can fix or mend should there be something else wrong with her.  We also increased her antineoplaston dose to full target dose of 200ml for the AS-10 and 18ml for the AS1-2.  She seems to be taking this very well so far.

Don't forget we are still fundraising to help pay for this treatment and please take a moment to check our 'Forthcoming Events' page for upcoming fundraisers.  There are some interesting ones on the horizon like Matthew May's tandem skydiving challenge at the end of June.  Matthew is hoping to get at least 30 people to jump for Supatra and I believe he has about 16 people so far!  You can also get more info direct from Matthew by looking him up on Facebook.  Then on 28th June there is 'Supatra's Big Night Out' at Antsy Hall in Cambridge.  Still plenty of tickets but they are going fast!

Thank you to everyone for the continued support, love, and well wishes. 

Best wishes to all,
Jorg

11 Apr 21

Hello everyone,

It has been too long since we last posted but I have had little inclination to do so as I seem to get busier and busier.  Good news is that there is no change in Supatra although she has her occasional bad days in between the majority good days.  I know I have not posted in awhile but I want to keep this post relatively short compared to my usual long winded ones :)

It seems like just yesterday Supatra had her 7th birthday.... oh wait it was just yesterday!  I swear she had a birthday for about a week starting with her party on the 24th, followed by her actual birth date on the 29th, then another celebration at the fabulously organised Destiny Charity Show in Norwich, and then some further late birthday gifts, wishes and treats throughout the next week.  Supatra really enjoyed herself and although we have not got around to sending thank you notes for the gifts - thank you to everyone who gave her one; she enjoys them all!  This last Monday we also spent the day at Legoland with our close friends Dave, Natalie, Isabelle, Sam, Sophie, William, and Lilly.  Supatra had a great time on the rides and loves the roller coaster, water ride and pirate ship.  It rained all day but that did not stop us from having a great day out although we were all knackered after that.  We were especially surprised with Supatra who managed to walk on her own for most of the day.  Very surprising as she is very tired and weak most days from her treatment and the affects of the steroids she must take.  We received the Burzynski clinic's report on her last MRI scan and basically has the same assessment as that from the NHS, that the tumour enhancement size has not changed and that it is too difficult to measure because of its reduced enhancement from the previous scan.  She still has all her symptoms although some of these can be from the treatment and steroid use while the left facial palsy is definitely tumour related and has not gone away.  To me this means that although the tumour does not seem to be growing it is also not receding enough to have a positive affect on her facial palsy.  We continue to press on, hope for the best and wish her smile back.  Supatra continues to give it her best fight.

I would like to say a special thank you to Matthew and Vanessa May for their continued support and some great fundraising initiatives on behalf of Supatra.  If anyone is interested in Skydiving please look them up on Facebook under Destiny Duo and let them know.  Matt is trying to get 30 people to skydive and raise 300 pounds or more each for Supatra.  Then there is Supatra's Great Night Out party at Cambridge's Antsy Hall scheduled for the 28 Jun 12.  This will be a big event so get your tickets now before they are all gone!

Thanks to everyone for following Supatra's story and for your many well wishes and continued donations.

Best wishes to all,
Jorg

NHS MRI Report has Arrived!

Hello Everyone,

Today we received the NHS's report on Supatra's latest MRI scan and it is good news!  There has been no significant change since the last scan on 1 Feb 12, no new lesions and less enhancement of the main tumour body again as compared to the 1 Feb 12 scan.  So, no mention of shrinkage but overall a very welcome report considering we were thinking that the tumour might have started growing again.  The Burzynski clinic is still awaiting the arrival of the scan CD for their own interpretation which I hope we will get next week.  I still have not got a written report from the clinic for the last MRI scan and have asked them to do their own reports using the scan CDs I am sending them as interpretations of MRI scans can vary greatly from doctor to doctor.  So it is important that the same doctor provides his/her analysis on each of the scans so there is a uniform assessment process; or at least as uniform as it can be.  I still have not got around to figuring out how to paste the PDF copies into this blog but for the time being I have created images of them and then pasted the last two reports below.

We are very happy with the status quo and the fact that the tumour seems to be getting less active as the decreasing enhancement indicates.  For those who may not know how this works I will try to explain.  During an MRI scan the patients body part is scanned first using no drugs to enhance the afflicted area.  Then they pause the test to inject a contrast drug into the patient that will enhance blood vessels.  Tumours rely and create a lot of blood vessels within the tumour mass to help continue to feed the tumour growth (rapid cell division).  Therefore if the contrast shows a lot of enhancement on the imagery then it means the tumour has many active blood vessels indicating an active tumour.  If the enhancements are less so or decrease then it can only mean less activity = less growth or no growth of the tumour mass.  However, what the MRIs do not do is necessarily pick up all parts of the tumour as is usually the case with DIPGs because DIPGs are DIFFUSE tumours that wrap themselves around the nerves that make up the glioma and also tend to grow little fingers or tentacles from the main mass.  It is these 'fingers' that can be very difficult to pick up with the MRI and so we think these are definitely still there as Supatra's left face continues to be affected by the cancer.  We hope that if Supatra's tumour can remain stable for the next 4-6 months or more that it just might start to breakdown from the lack of an ability to grow further or that Supatra's other supplementation will have a chance to beef up her immune system enough that it will start eating away at the tumour cells themselves.  You just never know!  Let's hope, let's pray, keep our fingers and toes crossed that this will be the case for Supatra and please keep fundraising so that she can maintain this treatment.  Thank you all!

Jorg
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Emotional Roller Coaster

Hello everyone,

The last week or so has been an emotional roller coaster ride for me and Punny as we watched Supatra getting more poorly almost on a daily basis.  Over the last while Supatra has been getting noticeably weaker in her limbs and then her tiredness increased as well to the point where she was dozing off at least 4-5 times a day even when engaged in an activity.  One minute she would be alert and the next she would be asleep and/or nodding off.  Then at about this time last week we noticed her speech dramatically slowing and she was having ever more difficulty chewing and swallowing.  I must note for those of you reading this blog for the first time that Supatra has left facial palsy which basically means that the left side of her face is paralysed and not functioning normally and that she has had this tumour symptom since last January/February.  The palsy has affected her ability to chew food properly but she was still able to do so and get by.  However, like last November when she had her seizures the chewing slowly became more problematic this week and she would also need to sip some water in order to help with her swallowing.  We were so worried and distraught knowing that all these progressive symptoms can be related to the tumour and its possible growth.  For the last 8-9 months we have been living a near normal life without thinking about Supatra's condition too much because her condition has been so stable.  Only in November and this past week have our worst thoughts come back to haunt us again as she became worse.  I just hate those thoughts as any normal person would thinking about their little one not being there anymore.  I hate this tumour, I hate the uncertainty, and most of all I hate that this is happening to someone so young...to lots of children so young.  Why make these poor Innocent children suffer like this?  Why can't it just be an old persons disease?  F#$k!!

While all this was happening we were also starting to wean Supatra down on her Dexamethasone steroid dose in preparation for a large blood diagnostic test that we were planning for this next week.  The test requires Supatra to be taken off of Dexamethasone for a few days before hand as well as stopping all non-essential supplements and also stopping the ANP treatment for at least 1-2 doses.  We had not reached the point of stopping the supplements and we were already thinking that that might allow the tumour to re-start its growth as well so we were going to keep giving some of the more important supplements and herbal extracts.  We also realised this week that her symptom progression was very similar to that which she had in November just before her siezures and it was also during a time we were trying to wean Supatra off her Dexamethasone steroids and so we decided on Thursday to increase her dose back up and give her a slightly larger pulse dose of 2.5ml/day; up from the 1.25ml dose she has been on for the last few months.  We gave this initial 2.5ml dose in the early evening of 21 Mar 12 and by the next day she was again more perky, alert and talkative.  Since then she has improved again and although I have my fears of what might be happening with her tumour it has given us some hope again that her reactions over the last few weeks might, just might be due to her body getting used to her 1.25ml dex dose and the fact that we then were trying to wean her off the dex completely.  We are ever hopeful and of course hugely anxious about getting her MRI Scan report which we hope to have sometime this Monday.  We are now approaching 14 months since Supatra's diagnosis and at least 17 months since we first noticed something wrong with her.  This is a crucial time for us and of course for our little girl who continues to grow up, albeit with a less then ideal childhood considering her difficulties with her cancer. She should be out doing everything a healthy 6, soon to be 7 year old is doing; riding a bike, running around in a park, going swimming, etc. 

This Saturday we also celebrated Supatra's birthday early by holding a little party at Funky Fun House in Cambridge with 12 of her close friends.  For those not in the know, Funky Fun House is an indoor play area for kids that has a big jungle gym type set-up for 2-12 year old.  This is Supatra's third time holding her birthday celebrations there and although we were trying to convince her to do something different she would not budge from her choice.  Of course its her wish and her birthday so we just did what she wanted and surprisingly it was much better then the last time and I think all the kids had fun.  The kids were able to play in the gym for an hour before a kids disco, some dancing games and then some lunch, cake and ice cream.  Supatra amazed Punny and I, considering how poorly she was a few days ago by going up and down the jungle gym about ten times with only minor assistance here and there.  Then she danced up a storm which you can see in the attached video and was alert and talkative the whole time.  She really gave her all to make this an enjoyable birthday party for herself.  A real inspiration knowing what she must be feeling like. Supatra's actual  birth date is on the 29th March and we will give her another present on the day and allow her to have a little more cake as well (she's on a strict no sugar diet although we let her have a treat once in a while especially on special days like this).   The video is a little dark at first but they do turn on the lights after about 1.5mins so take a look at Supatra's interesting dance moves! :)

All the best
Jorg

12 Mar 12

Hello everyone,

Supatra continues to do well although still more tired than she was a little over a month ago.  A few days after my last post I decided that we should try to edge Supatra's treatment closer to her target and increased the AS-10 by 2ml to 192ml.  She was doing really well at 190ml and her rash had gone away for a number of days so thought that it would be OK BUT after increasing it her rash came back again..arrgh!  The rash lasted almost all last week but started to recede by Friday and as of yesterday it was almost all gone.  The crappy thing is that the rash spots as they dissappear leave these ugly dark spots that look like bruises and they can take a couple of weeks to fad away.  Her arms and legs right now look terrible.  I feel so bad that she has to go through all this and it hurts me knowing that she wants so much to be out playing like regular kids and to be at school full time.  Punny still gets her to the school for 3-4 hours once or twice a week but it is not the same.  I also think that she and her best friend are starting to drift apart as they see less and less of each other.  We also continue to fear for her mental capability as her memory continues to be affected and she becomes more and more dependent on as for almost everything.  Its almost as if her brain is in reverse mode.  Sometimes she is sharp as a whip but more times than not she does not remember things she would otherwise easily have done.  Having to provide 24/7 care to Supatra is also starting to wear me and Punny down as one of us needs to be with her at all times and sleep with her.  The constant getting up and changing Supatra, cleaning the bed, emptying the portatoilet next to her bed really gnaws at your energy and both me and Punny are starting to feel it.  Even so I am trying to get back into the gym in the mornings but it is hard to work up the energy. 

We now have a date for Supatra's next MRI scan which is slated for the 22 March. Please put in an extra prayer for her on that day.  I really hope to see some tumour shrinkage but part of me thinks that it will be the same as before as her blood analysis does not indicate any tumour breakdown.  We can only hope and pray, I guess.  At least Supatra is managing to stay at her dose level and who knows, maybe it will take an extra few months at this level to start slowly wearing down the tumour.  We continue with the other alternative medicines as well.  Additionally, we read an online book called "How to Live a Long and Healthy Life...The facts you need to safeguard the health of your family" By Kevin Wright and can be downloaded for free at www.BobbysHealthyShop.co.uk.  It basically covers a whole bunch of things such as the water we drink, especially bottled water, chemicals in processed food, dairy products and such.  Some of this stuff we already knew and or had heard about before but we lost sight of and the information in this book has re-focused our energy on trying to mitigate modern life's impact on Supatra's cancer.  We not longer store her leftover food in plastic storage devices, no longer let her drink from plastic bottled water, we are trying to cut out as much processed food as possible - very hard to do - and in some cases where we can not make something fresh or find an alternative fresh source we try to choose the least harmful product out there.  We are replacing all sugars with honey and other natural non-refined sweeteners and absolutely under no circumstances are we giving her any food that contains artificial sweeteners.  Punny has been busy trying out our new bread maker and we are trying to cook fresh meals everyday.  Of course shifting once habits to a healthier old style of eating is very difficult when one is so used to modern conveniences like fast food, easily prepared processed food and using the microwave to heat things up.  We hope this new invigorated approach to a healthier way of living and eating will also have a positive affect in Supatra's cancer fight.  If you can I would read this manual as there are some interesting facts and the author does source and provide links to all his research - an interesting read which can be consumed in one evening!

Last, a big thank you to all the friends who ran in the Cambridge half marathon this last Sunday.  It was beautiful weather for it and we came out to cheer them on as well.  Everyone did a superb job and I think most of them came in at around the 2 hour mark! So, well done and thank you for enduring the pain on behalf of Supatra!!

A reminder as well that the committee will be hosting an Auction night at the Lion and Lamb Pub in Milton (see events page) and there will be some fabulous items to be auctioned off including celebrity items and sports memorabilia!  So please come out to this wonderful little village pub - that by the way has some delicious pub food and great social atmosphere - and support the fundriasing efforts.

Till next time,

Best wishes to all,

Jorg