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 paragraph....so 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!