Supatra continues to get used to the fact that she is now connected to the antineoplaston pump and tubes 24/7 although at times it is difficult for her and on us as we try to navigate around the apartment and when outside. We have to constantly be vigil that Supatra is not pinching off a tube, getting tangled or in danger of getting hung-up somewhere that would result in it pulling at her catheter. For the last week she has seemed a little out of it as well, not remembering things as well as she normally would and this adds to our difficulty in keeping her safe as we have to constantly remind her of her tubes and to be careful. I think, like all the other trials and tribulations she has gone through from her fear of the MRI scans to her distaste for taking pills she will eventually grow to live with this inconvenience and learn to take good care not to tug, yank or get the tubes caught on objects. She has been such a good girl. I feel bad when my frustrations get the better of me and raise my voice to her when she is not listening or refuses to do something like drinking her vegetable juice as she has been through so much; yet I also know that drinking her vegetable juice and eating her cottage cheese with flax seed oil concoction is very important to her overall cancer fight. We have to continue to hit this tumour from all angles and not give it a chance to adjust to any one particular treatment. I also feel guilty sometimes thinking that this is so hard for me and Punny yet it is actually Supatra that is going through all the rough stuff. Although Supatra has now only been on the treatment for five days we are already overwhelmed trying to come up with ways to keep both Supatra and Jason entertained as any little activity that we might chose to do needs to be planned out and we need to carry about 3-4 bags worth of stuff. If we want to go out like going to the Houston Aquarium on Saturday you have to consider whether she will be too tired or get sick, consider her frequent need to urinate, consider her walking with her wheelie backpack in a crowded area, etc, etc. It was a constant struggle keeping her catheter, equipment and herself safe from any complications. On top of that we still had to cater to Jason who is always wanting to run off and is screaming for our attention as well.
Yesterday on our trip to the Houston Aquarium we actually had Supatra try on some diapers again in case we could not find a restroom in time. At first she did not want to wear them as she was afraid of what other kids would say. I explained to her that the other kids would not see her wearing the diapers and that even some adults needed to wear these grown up diapers. She relented and in the end I think she likes the security of not needing to worry about peeing in her pants. We are still struggling with keeping her on a proper diet as her desire to eat has decreased quite a bit since we have arrived in Houston. This is likely a combination of her continuing withdrawal from her past steroid use and the hot weather. Also, every time we go out it impacts our ability to get Supatra to eat her anti-cancer foods and drink her juices as she normally takes up to two hours to consume these things because she does not like them. As an example, she does not drink her juice when taking her pills; it must be with water and usually some snacks. This can take anywhere from 30 minutes to 1.5 hours. Then she demands to have some fruit snacks with her juice and will in most cases not consume the juice with her cottage cheese and flax oil meal. Then her cottage cheese/flax oil meal can take up to two additional hours for her to consume. This can get rather tiring as we would have to constantly remind her to finish her food and juices. Yet in England she was eating and drinking this stuff on a regular basis with not a second thought and it was only on the odd occasion where she would put up a fuss. Now her fussing is constant. I pray that this antineoplaston treatment is going to work as I truly think that what we had been feeding her on a regular basis since her diagnoses is what was keeping her tumour from growing further. Now that she is only consuming these things intermittently I worry about what her tumour might be doing now.
Today, Sunday 18 Sep, Supatra vomited this morning after breakfast and told me she felt very tired. These are all symptoms that can occur with the antineoplaston treatment but she told me that she threw up because she did not like the last bit of her breakfast and since this morning she has not felt fatigued. So, at the moment we are not convinced this is in response to the treatment because she has not complained of any other symptom like headaches which is usually associated with vomiting if it is related to swelling in the brain. We also had her blood taken this morning at the clinic and it was a normal result and they therefore decided to continue increasing her dose. It is now 1745 and she is feeling good and taking her infusions without problems. She continues to urinate and drink alot of water. However, we are under no illusion that Supatra will likely start to react to her treatment in some way over the next week or two; we just hope it is minimal and does not last long. We were told last Wednesday that as the antineoplastons work to kill the tumour cells it is normal for the brain tissue to swell with all the dead cells in there. This swelling is what creates the pressure and results in headaches and vomiting. If it occurs then we will start Supatra off on a low 0.5ml dose of Decadron steroid and increase as necessary. We also continue to meet new patients at the clinic and yesterday met a woman who came there to treat her nine month old baby boy who had a GBM tumour and no hope for survival except for this treatment. It's heart breaking to see these young children suffering so much so early in life.
This afternoon, we were invited over to Nikki and Ben's house so that Jason and Supatra could play with their girls Naomi, Lilja. This is the second time they have invited us over and we really appreciate their friendship and support in this strange new city. Their little girls are wonderful and very nice to Jason and Supatra. Supatra looks forward to visiting them as she has no other friends to play with here at this time. Thank you Ben, Nikki, Naomi, and Lilja for your hospitality.
Tomorrow we start a new week of training on the administration of the antineoplastons while I need to find some time to put together some insurance claims and send off some material to Supatra's doctor in England in the hope that she will be able to help us. It will be busy as usual for us all - wish us luck!