The weekend was relatively uneventful for us as we continue to report to the Burzynski clinic every morning in order to do IV bag changes, set the pump for the next days infusion and do the occasional blood and urin lab work. On Saturday when we were finished with the clinic we returned to the apartment to rest up as Supatra is getting tired fairly easily lately and prepare some lunch. Then in the afternoon we went to a local mall to provide the kids some room to run and play in the malls play zone. We tend to do this every now and again as it is too hot to take them out to the outside play grounds. In the evening Supatra and Jason got to watch some family movies on TV (Finding Nemo and Home Alone II). Sunday was a nice quiet day at home and spent time in the garden with the kids. It felt good not having to go anywhere and to just lay around the house and garden.
Supatra continues to take the antineoplaston treatment well other than her tiredness. Friday we were told to increase the steriod dose frequency to three times a day but at only 1.25ml which is a pretty small dose. Her usual cycles in the past consisted of 7.5ml twice a day. However, today we discussed Supatra's symptoms or lack there of other then her tiredness, usually around the time of her antineoplaston dosages, and the doctor has agreed that we can reduce the steriods to twice a day for the next few days. If symptoms remain the same or are reduced then we can continue to reduce the dosage to only once a day, again for a few days before then stopping altogether. If at any time we see symptoms returning then we can increase the dosage again and even increase the ml as long as we call the clinic first to confirm the need. Me and Punny do not think that Supatra needs the steriods at this point but of course we have to slowly wean her off of them. Supatra is now on a 140ml antineoplaston dose on the AS10 bag and at her maximum 18ml on the second AS2-1 bag. Her target dose will be 200ml on bag one and 18ml on bag two which is much more concentrated. Therefore by this time next week Supatra should have reached her target dosage and then it will be re-assessed to see if she stays at that dose or it is increased slightly or decreased. These dosages are infused into her catheter 6 times a day every four hours. At the current dose and 100ml/hour intake rate it takes approx. 1.5 hrs to infuse which then leaves 2.5 hours on a slow drip that helps keep the lines open. We are also now preparing the IV bags for the next days dosage at home in the evenings. This means we have to wait for one of the infusion cycles to end which will leave us with 2.5 hrs to prepare the next days bags.
In order to do this we disconnect her tubes from her catheter and flush the catheter line with 5cc's saline. We attach a covered serynge needle on the end of the IV tube connector to keep it sterle and place it in a ziplock bag for extra safekeeping. Then we disconnect the current IV bags from the pump and place the bags and tubing off to the side. Next we take the new IV bags and new tubing out of their sterle packaging and tape one of the opened packages to the edge of the table where we will drain the excess antineoplastons fluid as we prime the bags and tubes. There are two tube lines, one for each IV bag and another Y junction tube set. You attach the Y junction tube set to the ends of the IV bag tubing; the other end of this Y junction set is attached later to Supatra's catheter tip. The Y junction tip is then dangled into the packaging we tapped to the edge of the table and as you prime the IV bags the excess antineoplaston fluid is deposited into the this bag, which is later thrown out. Then take each IV bag, one at a time into our hands and take off the top cap on the bag neck and insert the tube needle end into the bag neck opening and twist into the neck until it is well seated. Repeat for bag two and then connect the tubes to either side of the pump (tubes are appropriately marked for where they fit into the pump). Now thatb the tubes are connected to the IV bags and pump you can start to get the air out of the bags. I will not go into detail here as it is a very tedious process and all told preparing these bags can take up to an hour. Once the bags and tube lines are primed with fluids and there are no air bubbles present we disconnect the tubes from the pump and set the bags aside until they are needed the next day. Then you have to reconnect the current antineoplaston bags to the pump, flush Supatra's catheter line with 5cc of saline and then reconnect the tube to her for the next infusion cycle. By this Thursday we will also need to do a IV bag change on bag one half way through the day as we will exceed the 1000ml bag capacity during the course of a 24 hour cycle. It has to be during the third or forth dose (late afternoon or early evening) because if you wait until the first bag is almost empty you would be forced to do the change in the middle of the night/early morning. When you change a bag you also have to prime the air out just like when you prepare the new bags for a new day and therefore this can take some time so you do not want to be doing this at 3 or 4 am in the morning.
A couple of days ago we bought Jason a small 'rescue' garage to help keep him occupied in the apartment and it seems to be working. The only problem now is that Supatra and Jason will sometimes fight over the rights to play with it. So today I bought another different garage set hoping that there will be enough toys for all. Can't wait to see Jason's face light up when he comes home from the babysitter in the next hour.
I would also like to take this opportunity to say a big thank you to Punny's brother Mann in Thailand who has done so much for us in that country. Mann was the one that took Supatra's original diagnosis and scans around to various hospitals in Thailand for second opinions and found the retired oncologist that has developed a herbal extraction that has helped keep Supatra's tumour from regrowing. Additionally, Mann has recently taken an early retirement option at his job and wants to donate all of his retirement pay 200,000 thai Baht ($6,000.00) to help with the cost of Supatra's treatment. What a guy; and not forgeting all the help he has been over the years when we visit with the family in Thailand on our vacations. Thanks Mann and many thanks for all you have done for us and Supatra - your a fantastic uncle.
Tuesday, 27 September 2011
Saturday, 24 September 2011
23 Sep 11
Its been a frustrating week with the kids as they continue to act up when at home. Its been a difficult struggle to get Supatra back on to her anti-cancer diet and to have her take her pills. On top of this we had to start her back on a low steroid dose three times a day and as of today she must also take some potassium supplements as her potassium count was low. Supatra continues to feel tired and has muscle weakness but on occasion can get quite perky. We bought her a camel pack a few days ago to try out for carrying her pump and IV bags. She now has a larger wheelie backpack and the camel pack and she can choose which she would like to use. At first she resisted the camel pack as the pump and IV bags can be pretty heavy but she is starting to carry it on her back or sling it over her shoulder from time to time instead of us carrying it for her. I think slowly she will get used to it and start to be more independent again. We are thinking of designing something similar to the camel pack but made specifically for this device and treatment and then send it to Thailand to get manufactured. It will be much better then the little black shoulder bag you get with the pump which is not at all helpful for children on this treatment.
Tonight we get to prepare tomorrows IV bags on our own as we will not have enough time between the last dose in the morning and the next dose with the new bags. This is because as her dose continues to increase every day it takes longer to infuse the antineoplastons. Right now it is taking 1:34 to infuse one dose and we are only at the halfway point. By Monday they will start to increase the flow rate so that there is some time between doses. As an example; tomorrow morning her last dose for the 24 hr period will be starting at 06:25 and end at 07:59 and we have to be at the clinic by 09:15 therefore not leaving us enough time to prepare the next set of antineoplaston bags. Preparing the bags can take 40-60 mins. It will be really important for us to calculate our 24 hr period start time and end time so that we are not switching antineoplaston bags in the middle of the night. The bags come from the factory with some air in them and in order to prepare them for use we have to remove this air and any air bubbles that might be there. The first step is to insert the tube end needle into the bag opening, then insert a portion of the tube into the pump and make sure the other end is in the factory bag that the antineoplaston bag came in so that when you prime the IV bag it drips into this throw-away bag. Then hold the IV antineoplaston bag it upside down and tap the bottom where the bag opening is to get all the air bubbles out of the bag neck to float to top, then flip it over so the air moves back towards the bag neck where you just attached the tube to and start the pump. The pump sucks out the air and you have to keep tapping it with your fingers, hand, or an object so that as many air bubbles as possible are removed. then the pump gets turned off and you start the process again until all remaining air bubbles are gone. There's obviously a little more to this but I am too tired to try and explain each little detail. Needless to say it can be a lengthy process if you have a lot of bubbles in the bag and are having a hard time getting them to move through the bag neck and out the tube.
We are not sure what we will be doing this weekend but we will have to visit the clinic on each day and then we will likely stay in the area for now while Supatra gets used to the treatment. My sister and mother will be visiting us from 5-9 Oct so we may go to the Houston Space Center during this time. I have also been informed that a friend of mine from years ago, Brigadier General Williams has raised $1400.00 for us and I would like to say a public thank you to him and all those that helped him raise this amount and to those that contributed. In the near future I will try to provide an update on how our fundraising efforts are going and the total raised to date. However, it has been pretty low key to date as we are waiting to return to the UK before making a concerted effort in putting together some fund raising events. But we also have some friends in the UK who are now already planning some events and I believe Supatra's school will also do some things on our behalf. Thank you to everyone! In general, we have now raised enough for about one months treatment cost.
This week we were also told that family from the UK is also now here and we hope to meet them this coming week to discuss doctor support and get to know them. I believe they have a young daughter who also has a DIPG tumour. As well, yesterday we met a French couple from Dubai whose 6 yr old daughter was also diagnosed with a DIPG this May and although we did not get to meet their daughter we hope to do so this coming week. They may end up staying in the same place as us and that would be good as then Supatra could have someone to play with and relate to. Our new friends from Hawaii, Alex, Momoko and their daughter Olivia were at the clinic for the last time today as they have now finished their training and will be returning home to Hawaii this Sunday. We wish them all the best and hope the antineoplaston treatment works for Olivia and that she becomes healthy and strong again.
Tonight we get to prepare tomorrows IV bags on our own as we will not have enough time between the last dose in the morning and the next dose with the new bags. This is because as her dose continues to increase every day it takes longer to infuse the antineoplastons. Right now it is taking 1:34 to infuse one dose and we are only at the halfway point. By Monday they will start to increase the flow rate so that there is some time between doses. As an example; tomorrow morning her last dose for the 24 hr period will be starting at 06:25 and end at 07:59 and we have to be at the clinic by 09:15 therefore not leaving us enough time to prepare the next set of antineoplaston bags. Preparing the bags can take 40-60 mins. It will be really important for us to calculate our 24 hr period start time and end time so that we are not switching antineoplaston bags in the middle of the night. The bags come from the factory with some air in them and in order to prepare them for use we have to remove this air and any air bubbles that might be there. The first step is to insert the tube end needle into the bag opening, then insert a portion of the tube into the pump and make sure the other end is in the factory bag that the antineoplaston bag came in so that when you prime the IV bag it drips into this throw-away bag. Then hold the IV antineoplaston bag it upside down and tap the bottom where the bag opening is to get all the air bubbles out of the bag neck to float to top, then flip it over so the air moves back towards the bag neck where you just attached the tube to and start the pump. The pump sucks out the air and you have to keep tapping it with your fingers, hand, or an object so that as many air bubbles as possible are removed. then the pump gets turned off and you start the process again until all remaining air bubbles are gone. There's obviously a little more to this but I am too tired to try and explain each little detail. Needless to say it can be a lengthy process if you have a lot of bubbles in the bag and are having a hard time getting them to move through the bag neck and out the tube.
We are not sure what we will be doing this weekend but we will have to visit the clinic on each day and then we will likely stay in the area for now while Supatra gets used to the treatment. My sister and mother will be visiting us from 5-9 Oct so we may go to the Houston Space Center during this time. I have also been informed that a friend of mine from years ago, Brigadier General Williams has raised $1400.00 for us and I would like to say a public thank you to him and all those that helped him raise this amount and to those that contributed. In the near future I will try to provide an update on how our fundraising efforts are going and the total raised to date. However, it has been pretty low key to date as we are waiting to return to the UK before making a concerted effort in putting together some fund raising events. But we also have some friends in the UK who are now already planning some events and I believe Supatra's school will also do some things on our behalf. Thank you to everyone! In general, we have now raised enough for about one months treatment cost.
This week we were also told that family from the UK is also now here and we hope to meet them this coming week to discuss doctor support and get to know them. I believe they have a young daughter who also has a DIPG tumour. As well, yesterday we met a French couple from Dubai whose 6 yr old daughter was also diagnosed with a DIPG this May and although we did not get to meet their daughter we hope to do so this coming week. They may end up staying in the same place as us and that would be good as then Supatra could have someone to play with and relate to. Our new friends from Hawaii, Alex, Momoko and their daughter Olivia were at the clinic for the last time today as they have now finished their training and will be returning home to Hawaii this Sunday. We wish them all the best and hope the antineoplaston treatment works for Olivia and that she becomes healthy and strong again.
Tuesday, 20 September 2011
19 Sep 11
Today we resumed our training at the Burzynski clinic while doing our daily antineoplaston IV bag changes, re-setting the infusion pump, drawing blood and doing a dressing change. Supatra was great with no problems at all...as I suspected, as she gets used to the routine. I did the blood draw and dressing change today while Punny prepared the IV bags and set the pump for the next 24 hr infusion cycle. Supatra is doing OK but I think some symptoms/side affects are starting to appear from the treatment. She seems to have a little brain fog, is more wobbly on her feet, has a little muscle weakness and feels more tired. The doctor discussed with us about her going back on steroids but we said that we wanted to wait a little longer; however, after our meeting with the doctor we had second thoughts and will probably put her on a low dose (.05mg) of oral steroids tomorrow morning as per the doctors direction. I should mention that there are two IV bags one with AS10 and the other with AS2-1. The latter having a higher concentration of antineoplaston and is always set at a lower dose then the AS10. The AS2-1 is slowly increased every three days while the weaker concentrated AS10 is increased everyday if there are no complications. Tomorrow her AS2-1 is to be increased for the second time and therefore considering she is starting to show signs of the "normal" side affects we will start her on the oral steroids tomorrow morning to coincide with this increase in AS2-1.
After our morning session at the Burzynski clinic we went to do some food shopping and visit a health clinic so that me and Punny can get a check-up as we both continue to suffer from a bad nagging cough and chest congestion. The health nurse seems to think we have Bronchitis and put us on some antibiotics. So now three of us are on antibiotics and Supatra is undergoing her treatment! Hopefully, Supatra does not catch this bug as that would just make things extremely worse for her.
Tomorrow we also have a dietitians appointment and hopefully will get some good ideas for preparing low sodium foods for Supatra. The one good thing about the last few weeks is that Supatra is eating her normal small meal portions and is starting to lose some of her chubbiness in her face that was a result of her steroid use. Unfortunately, with this treatment it will be difficult if not impossible to get her to exercise as the treatment will make her more lethargic as she goes on.
Ciao, till next update!
After our morning session at the Burzynski clinic we went to do some food shopping and visit a health clinic so that me and Punny can get a check-up as we both continue to suffer from a bad nagging cough and chest congestion. The health nurse seems to think we have Bronchitis and put us on some antibiotics. So now three of us are on antibiotics and Supatra is undergoing her treatment! Hopefully, Supatra does not catch this bug as that would just make things extremely worse for her.
Tomorrow we also have a dietitians appointment and hopefully will get some good ideas for preparing low sodium foods for Supatra. The one good thing about the last few weeks is that Supatra is eating her normal small meal portions and is starting to lose some of her chubbiness in her face that was a result of her steroid use. Unfortunately, with this treatment it will be difficult if not impossible to get her to exercise as the treatment will make her more lethargic as she goes on.
Ciao, till next update!
Monday, 19 September 2011
16-18 Sep 11
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!
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!
Friday, 16 September 2011
Treatment Begins
Yesterday, 14 Sep 11, Supatra started her antineoplaston treatment and Punny and I started our training on how to administer the drugs. We were first shown our initial supplies and the dual infusion pump and then they proceeded to demonstrate how we need to flush the catheter line before administering or drawing fluids from it. We were shown how the tubes that lead to the pump and IV bags are set-up and how they initially set-up the dosage, flow rate and dose time on the pump. We were a little surprised at the amount of antineoplastons that Supatra would need to carry around along with her pump apparatus. The nurse then told us that today's IV bags were actually small ones because of the small dosage they are starting her on and that when she reaches her optimum dosage she will need to carry around a 1000 ml IV bag for one component of the antineoplastons and another 500 ml bag for the second portion. A tube from each of these bags then gets put through each side of the duel pump and is attached to her catheter tip. This is a lot of weight for a six year old to carry around and I thought she would be able to place all this stuff into a small child's backpack and carry it on her back but that is impossible now especially as she will be feeling poorly for the first number of weeks once on the treatment. The pump comes with a shoulder bag in which the IV bags can be stored as well but this bag is rather cumbersome as well and too heavy for her to carry. For now we have to carry the bag as Supatra trails along beside us as the IV tubes are only about 3-4 feet long.
Today Supatra also had her dressing change and for the first time it turned into a drama show for Supatra as she became very paranoid as to what we wanted to do with her catheter and reaching towards her catheter area would set her off. We tried everything to calm her down and explain exactly what we wanted and intended to do in order to change her dressing but to no avail. She finally relented in letting the nurse use some alcohol swabs to soak the surgical tape on her upper chest incision but it was too painful for her and we could see that her skin was irritated by the glue from the surgical tape. I don't know why they use this type of tape especially on a child. The nurse managed to get half peeled off on the one side as Supatra screamed bloody murder, to the point where other staff members were coming into the room to see what was going on. But after this initial attempt Supatra would not relent and would not allow us to continue so while she was distracted I yanked the remainder of the one side up with little resistance and the fact that she hardly noticed it caught Supatra by surprise. She then allowed the nurse to continue to take the other side of the tape off and the nurse quickly continued with the larger derma tape covering the catheter exit area and excess catheter tubing with little resistance from Supatra. I can understand her fear as the skin was clearly irritated by both bandages. Once off the nurse proceeded to show us how to open the sterile packaging (we were all already wearing masks and sterile gloves) and take out the alcohol swabs that would be used to clean the wound and surrounding tissue area and then re-apply a derma patch (a large clear sticky bandage). So this was our first treatment and training day, all taking about 3.5 hrs and we were allowed to go home carrying this pump, IVs and hooked up to Supatra. Other than the dressing change Supatra was great and she looked on with a six year old's curiosity.
Once home we tried to figure out how we were going to move Supatra around the house and on excursions for that matter, with tubes sticking out of her. We let her rest on the sofa and watch a Disney movie while we all relaxed for a while. Of course Supatra is not our only concern and we do have her little brother Jason to look after as well. I should mention that since the last day of the cruise he has developed a cough and at first we thought he might be catching a little bit of a cold but the cough has now persisted for two weeks and we are thinking of taking him to a doctor tomorrow. Punny also got this cough from Jason and has been sick for the last week and a half and as of this last weekend I have been coughing as well. We now know it is not a cold as we have no other symptoms. Jason has been vying for attention and he looks so sad when I drop him off at the babysitters house. He definitely does not like coming home to our apartment as I think it is too small and does not allow him to run around very much. Of course he has to also be careful around Supatra and we are extra vigilent because we don't want him to yank at her catheter nor the tubes for the antineoplaston infusion. We have bought numerous toys for both Supatra and Jason in the hope that they will feel more at home but Jason I think will take some time to adjust to his new surroundings.
15 Sep 11
Today we learned a little more about the pump set-up and how to prepare the IV bags of antineoplastons. The bag preparations can take some time as there is air in them and you have to tap them with your hand or another object in order to get all the air bubbles to the top and then you prime the IV bags using the pump until all the air and bubbles are out. This can take some time and once finished you then continue to prime the IV tubes to get any air bubbles out from them before connecting to the persons catheter. Its too bad that they can not manufacture these bags without the air in them as this would make things a lot easier. We were also shown how to draw blood from the catheter and what we needed to do for this. I should also say that along with the blood draws we also have to keep a running record of fluid intake and outtake. We measure the outtake by means of a plastic pot that goes underneath the toilet seat and when Supatra urinates we take the out-put measurement outlined on the side of the pot and record it into a log. the fluid intake (both medicine and drinking) must be within about 200cc's of each other. We must also monitor her sodium consumption as the antineoplastons is a high sodium solution and can cause swelling in the brain. We have also been given some Decadron steriods that we can inject through her catheter if she develops symptoms from too much soduim or if the symptoms come on slowly then we can start her on her normal oral steriods to reduce swelling in the brain while at the same time the antineoplaston dosage would either be reduced for a period of time or stopped all together. If something like this happens they then re-evaluate Supatra's treatment and decide whether to continue on a lower dose and take more time in increasing the dosage to the target amount needed for her condition.
Supatra sat through the whole training session without problem and just watched as they extracted blood from her and asked questions. At one point as they were taking the second vile of blood she stated in an excited voice "don't take too much, don't take too much and leave some for me". I understand her angst but had to laugh. We upped the dosage today as per the schedule they gave us and her dosage will be increased each day for several more days then it will tapper off and be increased more slowly at a point were most patients tend to start seeing side affects. So far everything is good with Supatra other then her complaining of itchy skin on her back and chest. This could be an early side affect but according to the doctors it is usually associated with a skin rash which she does not have. While in the training phase we will have to go to the clinic on the weekends as well. Tomorrow it is my turn to change tubes and IV bags and set-up the pump for the next 24 hrs. Punny will get to change Supatra's catheter dressing and draw some blood. Then the plan is to alternate so that every other day we get hands on trianing.
Today I also went out to look for a small trolly bag that Supatra can use to pull her pump and IVs behind her but that can also be used as a backpack later or when needed. I found one but it is still a little big for her but bought it anyways to let her try it out. She likes it! However, I will check a few more stores tomorrow to see if I can get a better one still.
I also took Jason to a local doctor's clinic for a check-up and was told he has a slight chest infection and that it is starting to affect one of his ears. She gave me an anti-bacterial perscription for him. Hopefully this will make him all better and he will start eating more and sleeping better.
Today Supatra also had her dressing change and for the first time it turned into a drama show for Supatra as she became very paranoid as to what we wanted to do with her catheter and reaching towards her catheter area would set her off. We tried everything to calm her down and explain exactly what we wanted and intended to do in order to change her dressing but to no avail. She finally relented in letting the nurse use some alcohol swabs to soak the surgical tape on her upper chest incision but it was too painful for her and we could see that her skin was irritated by the glue from the surgical tape. I don't know why they use this type of tape especially on a child. The nurse managed to get half peeled off on the one side as Supatra screamed bloody murder, to the point where other staff members were coming into the room to see what was going on. But after this initial attempt Supatra would not relent and would not allow us to continue so while she was distracted I yanked the remainder of the one side up with little resistance and the fact that she hardly noticed it caught Supatra by surprise. She then allowed the nurse to continue to take the other side of the tape off and the nurse quickly continued with the larger derma tape covering the catheter exit area and excess catheter tubing with little resistance from Supatra. I can understand her fear as the skin was clearly irritated by both bandages. Once off the nurse proceeded to show us how to open the sterile packaging (we were all already wearing masks and sterile gloves) and take out the alcohol swabs that would be used to clean the wound and surrounding tissue area and then re-apply a derma patch (a large clear sticky bandage). So this was our first treatment and training day, all taking about 3.5 hrs and we were allowed to go home carrying this pump, IVs and hooked up to Supatra. Other than the dressing change Supatra was great and she looked on with a six year old's curiosity.
Once home we tried to figure out how we were going to move Supatra around the house and on excursions for that matter, with tubes sticking out of her. We let her rest on the sofa and watch a Disney movie while we all relaxed for a while. Of course Supatra is not our only concern and we do have her little brother Jason to look after as well. I should mention that since the last day of the cruise he has developed a cough and at first we thought he might be catching a little bit of a cold but the cough has now persisted for two weeks and we are thinking of taking him to a doctor tomorrow. Punny also got this cough from Jason and has been sick for the last week and a half and as of this last weekend I have been coughing as well. We now know it is not a cold as we have no other symptoms. Jason has been vying for attention and he looks so sad when I drop him off at the babysitters house. He definitely does not like coming home to our apartment as I think it is too small and does not allow him to run around very much. Of course he has to also be careful around Supatra and we are extra vigilent because we don't want him to yank at her catheter nor the tubes for the antineoplaston infusion. We have bought numerous toys for both Supatra and Jason in the hope that they will feel more at home but Jason I think will take some time to adjust to his new surroundings.
15 Sep 11
Today we learned a little more about the pump set-up and how to prepare the IV bags of antineoplastons. The bag preparations can take some time as there is air in them and you have to tap them with your hand or another object in order to get all the air bubbles to the top and then you prime the IV bags using the pump until all the air and bubbles are out. This can take some time and once finished you then continue to prime the IV tubes to get any air bubbles out from them before connecting to the persons catheter. Its too bad that they can not manufacture these bags without the air in them as this would make things a lot easier. We were also shown how to draw blood from the catheter and what we needed to do for this. I should also say that along with the blood draws we also have to keep a running record of fluid intake and outtake. We measure the outtake by means of a plastic pot that goes underneath the toilet seat and when Supatra urinates we take the out-put measurement outlined on the side of the pot and record it into a log. the fluid intake (both medicine and drinking) must be within about 200cc's of each other. We must also monitor her sodium consumption as the antineoplastons is a high sodium solution and can cause swelling in the brain. We have also been given some Decadron steriods that we can inject through her catheter if she develops symptoms from too much soduim or if the symptoms come on slowly then we can start her on her normal oral steriods to reduce swelling in the brain while at the same time the antineoplaston dosage would either be reduced for a period of time or stopped all together. If something like this happens they then re-evaluate Supatra's treatment and decide whether to continue on a lower dose and take more time in increasing the dosage to the target amount needed for her condition.
Supatra sat through the whole training session without problem and just watched as they extracted blood from her and asked questions. At one point as they were taking the second vile of blood she stated in an excited voice "don't take too much, don't take too much and leave some for me". I understand her angst but had to laugh. We upped the dosage today as per the schedule they gave us and her dosage will be increased each day for several more days then it will tapper off and be increased more slowly at a point were most patients tend to start seeing side affects. So far everything is good with Supatra other then her complaining of itchy skin on her back and chest. This could be an early side affect but according to the doctors it is usually associated with a skin rash which she does not have. While in the training phase we will have to go to the clinic on the weekends as well. Tomorrow it is my turn to change tubes and IV bags and set-up the pump for the next 24 hrs. Punny will get to change Supatra's catheter dressing and draw some blood. Then the plan is to alternate so that every other day we get hands on trianing.
Today I also went out to look for a small trolly bag that Supatra can use to pull her pump and IVs behind her but that can also be used as a backpack later or when needed. I found one but it is still a little big for her but bought it anyways to let her try it out. She likes it! However, I will check a few more stores tomorrow to see if I can get a better one still.
I also took Jason to a local doctor's clinic for a check-up and was told he has a slight chest infection and that it is starting to affect one of his ears. She gave me an anti-bacterial perscription for him. Hopefully this will make him all better and he will start eating more and sleeping better.
Thursday, 15 September 2011
A word about my employers
Several days ago I posted some comments about the run around I am getting with regard to my insurance company which is a Canadian government sponsored insurance plan for members of the Canadian Forces. These comments may have been brash and fired from the hip; however, I would like to clear things up with regard to what I was trying to say and what I am trying to do with this blog.
First, the blog is meant to capture my family's trials and tribulations with regard to going through this cancer fight and our experiences with the Burzynski experimental cancer treatment. I therefore will write what I am feeling at that particular moment and if I say something that turns out to be wrong I will say so in a later blog when this error in perception is corrected or more information comes available that shows my error. At this moment, the Public Service Health Care Plan (PSHCP) is giving me conflicting information which I made known on this blog after my first negative comment about the plan. If they provide valid reasons for not supporting my claims or in the end come through by allowing me to claim all or portions of my daughters medical costs then I will sing their praises and provide a mea culpa. But I must stress that I am writing what I feel is going on in our lives at this moment not what might happen in the future and if a PSHCP rep tells me or the medical institution trying to file a claim on my behalf tells me that they will not support the claim then I will write about it in an honest fashion.
Second, my reference of the PSHCP and Canadian Forces (CF) in the first case was not meant to construe that the CF has not been supportive nor helpful since my daughters diagnosis. They have been nothing but supportive from my immediate Canadian supervisor in the UK all the way up the chain of command to National Defence HQ in Canada. Additionally, my US Commander in the UK and all of the staff at the unit have been huge supporters of my family during this difficult time and we thank every one of them. The Canadian Forces is a great organization and team and I have had a wonderful career and I will not denigrate the CF in any way. However, I will discuss things that may involve the CF in some way with what we are going through.
My remarks about seeking legal advice stands in that if the insurance plan does not come through and deny all claims I will first check to see what would have been available to my daughter if I was in Ontario and see if I have been disadvantaged or if there is a legal claim to be made against any negative PSHCP decisions (we are starting this checking process now). That is my choice and my right. The fact that information was presented in a certain way by CF personnel is niether here nor there and I seek no recourse with this. If in the end I am correct in my initial assertion that the PSHCP will not cover any of our claims then I would only ask, at that time and through my chain of command, that correct and/or more detailed information be provided to newly posted personnel outside of Canada. The way it was presented to me was that I had nothing to worry about as my family was covered with the Level III plan - some things at 100% and others at a lesser percentage. Maybe I am at fault for not checking things in more detail however, I have tried this with Mondial Insurance (the sub-contracting agent) and they always tell me that they would need to see a specific bill in order to make a comment on whether or not they would cover a claim item. This is why we would have come here to Houston anyways. All I am stating here is my belief that the PSHCP and Mondial Insurnace should cover the majority if not all costs associated with this treatment. If there ever was an emergancy then this is it, at least in our opinion.
In short, to my CF comrades, don't get upset because my frustrations may show through on this blog as it is meant to for the benefit of those who may have to go through this journey as well. It is meant to tell people, military or not, that they should be prepared to deal with difficult situations including insurance companies and be prepared to pay all costs alone or with the help of family and friends as we are doing now; or that insurance companies will sometimes deny a claim but then relent if pushed with evidence supporting your claim, as has happened with some US Burzynski clients in the past.
If your looking for a job and a great career go join the Canadian Forces! (P.S. if interested in the infantry...join the PPCLI - they rock!)
Thank you to everyone for their help, advice, suggestions and most of all your support.
First, the blog is meant to capture my family's trials and tribulations with regard to going through this cancer fight and our experiences with the Burzynski experimental cancer treatment. I therefore will write what I am feeling at that particular moment and if I say something that turns out to be wrong I will say so in a later blog when this error in perception is corrected or more information comes available that shows my error. At this moment, the Public Service Health Care Plan (PSHCP) is giving me conflicting information which I made known on this blog after my first negative comment about the plan. If they provide valid reasons for not supporting my claims or in the end come through by allowing me to claim all or portions of my daughters medical costs then I will sing their praises and provide a mea culpa. But I must stress that I am writing what I feel is going on in our lives at this moment not what might happen in the future and if a PSHCP rep tells me or the medical institution trying to file a claim on my behalf tells me that they will not support the claim then I will write about it in an honest fashion.
Second, my reference of the PSHCP and Canadian Forces (CF) in the first case was not meant to construe that the CF has not been supportive nor helpful since my daughters diagnosis. They have been nothing but supportive from my immediate Canadian supervisor in the UK all the way up the chain of command to National Defence HQ in Canada. Additionally, my US Commander in the UK and all of the staff at the unit have been huge supporters of my family during this difficult time and we thank every one of them. The Canadian Forces is a great organization and team and I have had a wonderful career and I will not denigrate the CF in any way. However, I will discuss things that may involve the CF in some way with what we are going through.
My remarks about seeking legal advice stands in that if the insurance plan does not come through and deny all claims I will first check to see what would have been available to my daughter if I was in Ontario and see if I have been disadvantaged or if there is a legal claim to be made against any negative PSHCP decisions (we are starting this checking process now). That is my choice and my right. The fact that information was presented in a certain way by CF personnel is niether here nor there and I seek no recourse with this. If in the end I am correct in my initial assertion that the PSHCP will not cover any of our claims then I would only ask, at that time and through my chain of command, that correct and/or more detailed information be provided to newly posted personnel outside of Canada. The way it was presented to me was that I had nothing to worry about as my family was covered with the Level III plan - some things at 100% and others at a lesser percentage. Maybe I am at fault for not checking things in more detail however, I have tried this with Mondial Insurance (the sub-contracting agent) and they always tell me that they would need to see a specific bill in order to make a comment on whether or not they would cover a claim item. This is why we would have come here to Houston anyways. All I am stating here is my belief that the PSHCP and Mondial Insurnace should cover the majority if not all costs associated with this treatment. If there ever was an emergancy then this is it, at least in our opinion.
In short, to my CF comrades, don't get upset because my frustrations may show through on this blog as it is meant to for the benefit of those who may have to go through this journey as well. It is meant to tell people, military or not, that they should be prepared to deal with difficult situations including insurance companies and be prepared to pay all costs alone or with the help of family and friends as we are doing now; or that insurance companies will sometimes deny a claim but then relent if pushed with evidence supporting your claim, as has happened with some US Burzynski clients in the past.
If your looking for a job and a great career go join the Canadian Forces! (P.S. if interested in the infantry...join the PPCLI - they rock!)
Thank you to everyone for their help, advice, suggestions and most of all your support.
Wednesday, 14 September 2011
10-13 Sep 11
Supatra continues to amaze me as she has not uttered one complaint of pain or discomfort since her port-a-cath was inserted. If you look at the picture below you will see that it is no small matter having this device inserted. They make an incision above her collar bone to insert the catheter into the vein and then funnel the tube under her skin to exit next to her breast. The tube is curled under her skin for flexibilty and security and has a mesh collar just under the skin so that new skin will grow into it securing it even more. There are also two stitches holding it into place for added security and then it is taped down with a large clear bandage. It looks bad and I am sure if I had one I would not be comfortable with it, yet Supatra has said nothing and on Saturday, 10 Sep 11 she was up and about playing with Jason and running around as if nothing was there! In fact, a couple of times we had to caution her to settle down as we were afriad that the tubing might be disturbed so early after her surgery. She is such a great sport and as long as you calmly explain what she is about to undergo and tell her that it is all for her to get her better, she is good to go. We only had one visit to the Clinic on Saturday so that they could check the catheter and change her dressing. We met another family from Hawaii that has a six year old daughter suffering from a GBM tumour that has matestisized (sp?). We talked a little about their experience with the Burzynski clinic and the treatment as they have already been here for a week. They were of the same opinion as us in that we as parents really do not have a choice when conventional medical treatment no longer is an option and you just have to do whatever is necessary to try and save your child. We pray that Olivia will take to the treatment and become healthy again and we wish her parents all the best on their journey.
On Sunday, 11 Sep 11 we visited another family, Nikki and her two daughters who we were introduced to via facebook from a mutual friend and the kids had a chance to play with each other which was really nice. Thanks for inviting us over Nikki. Other then that we spent some time looking around some of the malls while trying to keep the kids busy.
On Monday 12 Sep 11, we managed to get our baseline MRI scan appointment for Supatra for Tuesday morning. This baseline MRI is needed by the Burzynski clinic in order to start the protocol and from this scan they will compare future scans to determine the effects of the treatment on the tumour. I was shocked to learn that the MRI was going to cost us approx. $6,000.00 dollars as a similar scan would only cost us between GBP 400-600.00 in England. I decided to call the insurance company and try to determine why they had turned down our previous attempts to claim these medical fees and surprisingly they told me that the person the surgery clinic previously tried to deal with probably got our information wrong and that we should be covered. This was a great relief but I will not be jumping for joy until they start paying for some of these costs. On top of this I still do not know whether they will cover everything or only certain aspects of the medical bills. But at least it has offered us a glimmer of hope as I certainly was not expecting to pay upwards of $6,000 for an MRI. We don't even have the exact cost for this MRI as the hospital that we booked the MRI through could only tell me that the base hospital cost was $4,000 and that the actual MRI clinic location (separate from the hospital) would charge for their services and medications used. I just can not believe an MRI should cost so much and don't understand what the hospital is charging $4,000 for...taking our phone call??? I can't believe Americans accept this Sh$t.
Tuesday morning me and Supatra arrived at the MRI clinic while Punny stayed at home with Jason. Supatra was a trooper again as I had to tell her that they would need to put in an intravenus (Sp?) line on her hand at the last minute. Just the day before I told her she would not need this anymore because she now had a port-a-cath line in and all medications would now be given to her that way. When we arrived and checked in they told us that they were not sure the medication needed to hi-light her tumour, Magnevist, during the scan could be injected through her catheter as it might clog it up and damage it. So they tried to place an intravenus line into a vein in her hand but the nurse blew the vein. She then had to find another vein in her arm while we tried to calm and reassure Supatra that it would not hurt like the first attempt. It took some time as you can imagine but in the end Supatra relented and let the nurse try again. The nurse then blew the second vein and it was near impossible to get Supatra to cooperate any longer and she insisted it go through her existing catheter. The nurses then agreed to double check with some other doctors and the Burzynski clinic and in the end they said it was OK to use the catheter. Why they could not have done this in the first place I do not know. Anyway, we were then ushered into the MRI room and Supatra was put on the table. I was alllowed to stay by her side as I had done several times before in the UK. This was going to be a much longer MRI session and would last about an hour. Luckily Supatra managed to fall asleep through the noise of the machine and the music that was being piped into her headset. In fact she slept while the nurse gave her the Megnevist injection through her catheter and she did not feel a thing. When we got back to the prep room the nurse flushed the catheter line several times by pumping saline through it and Supatra just watched and took it all in - unphased! Funny thing is, when we got back to the car she said "See they should have listened to me when I told them the first time to give me the medication through my catheter". She is sooo right!
The rest of the day was ours to enjoy and we will now have our first treatment session at the Burzynski clinic this Wednesday morning. I am keeping my fingers crossed that Supatra does not get any or only minimal side affects from this treatment as I would hate to see her poorly again. Its now late at night and Jason, whom I get to sleep with in the living room is fast asleep on my side of the bed - what a cute little munchkin. Good night all and wish Supatra luck tomorrow and throughout her treatment.
On Sunday, 11 Sep 11 we visited another family, Nikki and her two daughters who we were introduced to via facebook from a mutual friend and the kids had a chance to play with each other which was really nice. Thanks for inviting us over Nikki. Other then that we spent some time looking around some of the malls while trying to keep the kids busy.
On Monday 12 Sep 11, we managed to get our baseline MRI scan appointment for Supatra for Tuesday morning. This baseline MRI is needed by the Burzynski clinic in order to start the protocol and from this scan they will compare future scans to determine the effects of the treatment on the tumour. I was shocked to learn that the MRI was going to cost us approx. $6,000.00 dollars as a similar scan would only cost us between GBP 400-600.00 in England. I decided to call the insurance company and try to determine why they had turned down our previous attempts to claim these medical fees and surprisingly they told me that the person the surgery clinic previously tried to deal with probably got our information wrong and that we should be covered. This was a great relief but I will not be jumping for joy until they start paying for some of these costs. On top of this I still do not know whether they will cover everything or only certain aspects of the medical bills. But at least it has offered us a glimmer of hope as I certainly was not expecting to pay upwards of $6,000 for an MRI. We don't even have the exact cost for this MRI as the hospital that we booked the MRI through could only tell me that the base hospital cost was $4,000 and that the actual MRI clinic location (separate from the hospital) would charge for their services and medications used. I just can not believe an MRI should cost so much and don't understand what the hospital is charging $4,000 for...taking our phone call??? I can't believe Americans accept this Sh$t.
Tuesday morning me and Supatra arrived at the MRI clinic while Punny stayed at home with Jason. Supatra was a trooper again as I had to tell her that they would need to put in an intravenus (Sp?) line on her hand at the last minute. Just the day before I told her she would not need this anymore because she now had a port-a-cath line in and all medications would now be given to her that way. When we arrived and checked in they told us that they were not sure the medication needed to hi-light her tumour, Magnevist, during the scan could be injected through her catheter as it might clog it up and damage it. So they tried to place an intravenus line into a vein in her hand but the nurse blew the vein. She then had to find another vein in her arm while we tried to calm and reassure Supatra that it would not hurt like the first attempt. It took some time as you can imagine but in the end Supatra relented and let the nurse try again. The nurse then blew the second vein and it was near impossible to get Supatra to cooperate any longer and she insisted it go through her existing catheter. The nurses then agreed to double check with some other doctors and the Burzynski clinic and in the end they said it was OK to use the catheter. Why they could not have done this in the first place I do not know. Anyway, we were then ushered into the MRI room and Supatra was put on the table. I was alllowed to stay by her side as I had done several times before in the UK. This was going to be a much longer MRI session and would last about an hour. Luckily Supatra managed to fall asleep through the noise of the machine and the music that was being piped into her headset. In fact she slept while the nurse gave her the Megnevist injection through her catheter and she did not feel a thing. When we got back to the prep room the nurse flushed the catheter line several times by pumping saline through it and Supatra just watched and took it all in - unphased! Funny thing is, when we got back to the car she said "See they should have listened to me when I told them the first time to give me the medication through my catheter". She is sooo right!
The rest of the day was ours to enjoy and we will now have our first treatment session at the Burzynski clinic this Wednesday morning. I am keeping my fingers crossed that Supatra does not get any or only minimal side affects from this treatment as I would hate to see her poorly again. Its now late at night and Jason, whom I get to sleep with in the living room is fast asleep on my side of the bed - what a cute little munchkin. Good night all and wish Supatra luck tomorrow and throughout her treatment.
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| Supatra's Port-a-cath. |
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