Saturday, 5 November 2011

30 Oct - 4 Nov 11

Everyone is probably wondering if we would ever post again, eh?  Well, its been another busy week since our return and it seems to be even harder to keep the blog up to date now that we have returned to the UK.  We are struggling to find a workable battle rhythm that will allow us to finish preparing the next days antineoplaston bags while also allowing Punny and the kids the ability to wake up at a normal time in the mornings.  With me now back at work it is Punny who must take the brunt of the work load that we shared so well in Houston.  It is hard to put it into words the little extras that seems to chew up our time but certainly Supatra requires much more supervision and care then before the treatment.  Both me and Punny have little to no time to relax anymore and our nights, after feeding and putting the kids to bed are filled with preparing the next days IV bags.

On Monday, Supatra got her wish to go trick or treating with her close friends at RAF Lakenheath and I think she really enjoyed it even though for parts of it she had to trick or treat from the push chair.  Jason certainly didn't mind, as long as people were throwing candies in his pumpkin bucket while sitting in the push chair he was happy.  I think he ate 4-5 chocolate bars before we noticed him doing so and finely had to take his candies away from him.  Now Jason is constantly craving for chocolate!  Supatra was dressed as a beautiful butterfly and enjoyed some of the spooky decorations; some quite elaborate as well. 

As stated before, Supatra needs to have her blood taken every Monday, Wednesday and Friday to monitor her health while on the treatment.  With the blood being shipped to a London lab we do not get the results until the next day and on Tuesday we were told that Supatra's white blood cell (WBC) count was very low.  WBC is what drives your immunity system and having a low WBC count means that Supatra is susceptible to infections.  Supatra's WBC has always been quite low but it has even dropped further than her 'normal' level.  It is a concern and we are watching her closely to make sure no other symptoms occur.  On Wednesday 2 Nov, we also had our first Addenbrookes Hospital oncologist appointment since returning from the USA and they also told us that should Supatra start to feel poorly or run a fever that she would need to be admitted right away and would need to come off her antineoplaston treatment until she recovered from whatever might be afflicting her. Wednesday's blood work showed a slight rebound in the WBC count but there are also other elements within the blood that are down as well.  Today's blood results have not yet arrived and we should see those tomorrow; hopefully things will be getting back to normal soon.  The doctors believe that the low blood counts might be due to her restarting the treatment on a full dose and it is therefore having a dilutive affect on her blood.  If so then she should bounce back and normalize again soon.  So far we have noticed no other symptoms and she says she feels fine.  As well, this week saw her develop a slight rash on her legs and arms which can be associated with antineoplaston treatment.  Additionally, on Wednesday we stopped her low steroid doses as we do not think she needs to keep taking it right now.  Her appetite has already started to drop off and we are hoping that she does not stop eating altogether as that would just add to her woes.

The Wednesday oncologist appointment was rather disappointing as they continued to insist that they could not support any of our medical requests like blood work and MRI scans which are associated with the treatment regiment.  So much for the NHS.  I certainly hope our system in Canada will not treat us the same. 

We also had a meeting with Supatra's head teacher to discuss her coming back to school and she was very supportive although we will have to arrange for the specialist nurse to visit the school again and explain to the kids about Supatra's tubes and medicine pump.  We will also be required to draft up a detailed contingency plan for any eventuality.  We agreed that once these things are ready we would try to have Supatra attend school in the afternoon for an hour or so to see how it goes.  We also suggested that Punny might be able to stay with her while in school to help her get to the bathroom and carry her backpack and therefore be less disruptive to the class.  I think in the end we will have to source a tutor and look at doing some home schooling for her as well.

Tonight we took her to her school to watch the annual 'Burns Night' fireworks, which were great as usual.  Supatra seemed quite perky around her friends, put her backpack on and ran around for a while.  Supatra also got to see Ms. Kirby, her former year one teacher which really please Supatra.  Thanks Ms. Kirby for being such a good friend and excellent teacher to Supatra.  While we are at it, we should also thank Angelina for making copious amounts of excellent and tasty foods for us.  I think it pretty well saved us from cooking all week :)

There has also been lots of news on the fundraising front but I think I will save that for another entry, hopefully this weekend as it is getting past my bedtime.  I will endeavour to post at least twice a week in the future so that these posts are not too long next time.  Have a good night and enjoyable weekend.

Best wishes to Olivia, Luna, Joseph, Leyel and Billie; hope you are all doing well and on the road to full recovery.

Jorg, Punny, Supatra & Jason

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