Over the past week Supatra has been doing very well and we have weaned her to a low 1ml steriod dose per day over the past few weeks. Each of these steriod cycles takes about 3-4 weeks depending on how she is doing. On 8th Apr 11 we stopped the steriods but later at supper she loudly complained of a headache at both the back and front of her head as well stating that she had these headaches at school today. Worried, we immediately put her back on a low dose of steriods and decided that we would try to stop the dosages in a few days time. Again, I get this feeling that the tumour is still growing.
UK Charities
I have been remiss for not writting about the various UK charities out there for cancer families. Early after diagnosis we were introduced to a CLIC Sargent worker and she ran us through some of the available help that is provided by a whole slew of charities, some small some big. The CLIC Sargent rep offered to apply for a grant to help with expenses and told us of other charities that do the same plus those that offer wishes to the children and vacation breaks to the families. I felt uneasy about accepting any money but in the and we did and it certainly came in handy. It surprised me and Punny how quickly things started adding up. Change of diet and our food bills significantly rose. Need to juice and blend and we had to get the appliances. New clothes for Supatra as after March nothing in her closet fit her anymore, etc , etc. The biggest impact though came from the Round Table Children's Wish Foundation when they granted Supatra her Disney Paris trip wish. Not only did they pay for everything but they also provided a generous amount of spending money. Our big trip was going to be on 19-22 April. There are others as well which will get mentioned later but I just think they are providing a great service to cancer families and make a huge difference. I will certainly not forget their generousity.
9-15 April 2011
On 9 Apr 11, Supatra complained of not being able to open her mouth very well. I thought it might have something to do with the weight she was putting on but to be safe decided to increase her steriod dose to 1.5ml the next day. On 10 Apr 11, Supatra complained of pain in the mid section of her back and this lasted for 40-50 mins but the rest of the day she felt better. On 13-15 Apr 11 we went camping with several friends of ours and their kids. It was rather cool but Supatra has always wanted to go camping and roast some marshmellows; she's really been looking forward to this trip. We had a great time although it rained off and on. We went crab fishing and took a steam train ride and sat around a camp fire. Through it all Supatra never complained once even though the adults - me included - complained about the cold weather. I was really impressed by her attitude and and stalwartness as even when it rained she continued to sit outside around the fire!
Supatra has been doing well this week and she has been really excited about the trip to Disney Paris on 19 Apr 11. Although we have already had Supatra on a very low dose of steriods for some time we have decided to keep her on it until after the trip to Paris. On 16 April, Supatra had her follow-up MRI to see what affect the radiotherapy had on her tumour. It was good news in that the tumour shrank quite a bit but there was also a residual shadow around the remaining tumour and the doctors did not know how to interpret this. It was either dead tumour cells or something else. On 18 Apr 11, we went to London to stay over night in a hotel in preparation for our early morning departure on the Eurostar train to Disney Paris. On 19 Apr 11, we departed London for Disney paris and had a great time on the train. The train is surprisingly fast and within approx. 3 hrs we were at Disney Paris. Supatra got a ViP pass with very special privelages. We managed to get on a number of rides the first day after arrival and on the second day Supatra was personally escorted to meet all the Disney princesses and got to speak with them and get their autographs. On the third day we had a Disney character breakfast and she got to meet all the main characters. Of course she wanted a princess dress and a bunch of other souvenirs which we happily bought for her. We had a great time thanks to the Round Table Make A Wish Foundation!
23-30 April 2011
Supatra continues to do OK and continues to add significant weight even though we are trying to control her eating. She is feeling slightly more tired and lethargic but this could be and is likely to be an affect of stopping her steriods. On 25 Apr 11, Punny decided to put her back on the steriods as Supatra was not getting any better. Her balance has gotten worse and her left facial palsy is also more accentuated. We continue to worry and do more research into alternative therapies and conventional treatments. However, I am getting tired of all the negative answers from the doctor with regards to all the conventional treatments, trials, and up and coming promising drugs that I raise with her. In february the dietician never even talked to us about healthy foods, staying away from sugars, and what anticancer foods to eat. I just shake my head thinking about how they have been at this disease for decades and decades yet they still don't think about combining numerous treatments including alternative and complimentary treatments to together to attack the problem. Its all about trying one thing and if it doesn't work move on to try something else or in the case of Diffuse Intrinsic Pontine Gliomas just giving up after radiotherapy. Everything we have done with Supatra's diet and herbal medications has been through our hard work and steep learning curve instead of it coming from either the doctors, who by the way should have nothing to lose in recommending complimentary treatments, or from someone like the dietician. It just pisses me off that they just seem to willy nilly dismiss what could be very beneficial in extending someones life.
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