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
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