Monday, 18 June 2012

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 Supatra, my first born, my only daughter.....gone forever

 Love you Supatra, take care, watch over us

Love Daddy, Mommy and Jason


  1. You did your best! Supatra's very proud of you both. Don't beat yourselves up Supatra wouldn't want that, she would want you to rest your minds and remember all the great moments you shared together.
    Much love to you always from Matt, Vanessa & Family x

  2. You really couldnt have done more for Supatra, and i am sure that she was secure in the knowledge that she was loved and treasured by you both as this was so obvious to all around you. People have so much admiration for the way you have handled this traumatic period. I think it is a natural reaction to blinker out the deterioration of a loved one, but that keeps life normal and stable for them. I am sure these words are of little comfort and whatever is said cant ease your pain.
    My best wishes

  3. I'm the mother of a child with a brain tumor. There have been many deaths on our online support group, which I joined when my child was first dx'd more than four years ago. I think it is normal for parents to question what they have done or have not done when their child passes away and I think we tend to be very harsh with ourselves. I believe it's just an expression of an unbearable question that we will never be comfortable with: how could it be that we parents are healthy and thriving, while our child did not thrive? Please ask yourself, what if you HAD been available to your child 24/7 from the moment of dx to the time of passing; if you had ALWAYS been vigilant to your child's every need and ready to satisfy every whim. Would it have made their life better? My guess is probably not. Please stop beating yourself up about the last few days of your child's life. You did the best you could with the knowledge that you had when your child started to decline on an experimental treatment.

  4. Supatra was lucky to have parents like yourselves. WAY to fight for her till the end!!! I too have a daughter with a brainstem tumor, it's not an easy road to travel. I watched Supatra's memorial video and you guys did an amazing job of letting her live her life to the fullest. I can't imagine what you are going thru, but I pray that good memories of Supatra heal your heart.

    Sending love,

    Massiel Merritt