Saturday, 29 October 2011

No place like home!

Well, its been a busy week again for us.  Since the last update on Sunday 23rd October we have been preparing for our flight home which was on Wednesday 26 October.  On Monday, 24 October Supatra had her MRI done and like the previous ones she was a real pro not moving an inch and actually sleeping through the entire 45 min procedure.  The technician was very impressed and said her images came out crystal clear because she did not move at all.  The rest of the day we continued packing for our return trip all the time wondering how we would fit everything into our bags.  Its amazing how much extra stuff you can accumulate in just two months; mind you we did have to buy numerous toys for the kids to keep them happy.  Tuesday was tied up with seeing the Burzynski doctors to discuss a few issues and find out the MRI results.  Happy, happy, happy news, Supatra's tumour has shrunk a little.  It was not a dramatic shrinkage and they could not yet give us a percentage as the radiologist had not finalized the report but shrinkage nevertheless.  Compared to the last MRI measurements, I figure at least 10% reduction in size.  We got to sit with the radiologist and see the images and discuss the results as well.  As of today I still have not received the final scan report and sent them a reminder that we are waiting for it.  We are very happy considering over the last few days we were getting worried about Supatra as she seemed out of it, tired, lethargic, and just not herself.  We found out at the meeting that it was her sodium level that was high and likely the cause.  The doctors told us to take her off treatment, which we were about to do anyways for the trip and await the next blood results before they would determine whether or not she could go back on the treatment.  We also picked up our initial supplies of medical equipment and antineoplastons to take with us on the flight home.

We are feeling so relieved knowing that the treatment is working for Supatra.  At around the same time we also heard news about a boy named Joseph whom we met at the clinic and who started treatment after Supatra.  Joseph is from Louisiana, five years old and has Glioblastoma multiforme (GBM) brain tumour.  His parents decided not to go with the regular medical treatments as they did not like the side affects and were not given much hope by the doctors.  Therefore they took him straight to the Burzynski clinic for antineoplaston treatment.  Well, only about 3-4 weeks into the treatment after they had gone home they noticed that Joseph's symptoms were going away and wanted to know what was happening to him so they took him for an MRI earlier then required and to their great surprise and joy were told the tumour had shrunk by 95%!  After only a few weeks of treatment on antineoplastons. WOW! We are so happy for them and wish them all the best.

Wednesday's travel home went very well; better then expected, thanks to Lorna Pyke who helped us out by smoothing the waters with British Airways (BA).  Lorna talked to the ground crew at Houston and Heathrow airports and the flight aircrew which proved to be very beneficial.  The Houston ground crew were very helpful and did not fuss about our excess luggage nor weight.  They also upgraded us from economy to the next level and let us use the BA club lounge which really made a big difference to the way we usually travel.  When we arrived on board the crew knew who we were and were ever so helpful to us and so kind to Supatra.  When we were settled in the crew had two available seats in club class (the individual reclining seats) and let Supatra and Punny sit there while me and Jason stayed in what I think is called executive class.  It was a very good flight and we are ever so grateful to the Houston ground crew and flight crew for their kindness and service.  Last, a big thank you to Lorna for helping us out and making it a hassel free trip home.

We arrived home around noon Thursday and pretty much just did some unpacking and slept as we were all tired (Jason did not sleep much on the flight and kept us busy).  Since being home we have done allot of sleeping and just getting re-acquainted with our house and big kitchen which we missed so much.  Of course our friends were great again and left us some welcome home presents for us and the kids (thanks Mie and Nat). 

On Friday we also had our first appointment with our new doctor and we drew some blood there for him to send off for analysis.  Today, Saturday, we received the results and not surprisingly Supatra's sodium level has come back down, considering she had been off treatment for the last three plus days.  Today we were allowed to resume treatment at half dose for today and we are then to go back to a full dose the next day.  Hopefully we can keep her sodium levels in check or else the doctors may decide to reduce her treatment dose, which is not what we want.

All in all, everything is good; we are home; we are happy with Supatra's progress and we look forward to getting our daily lives back to normal as soon as possible.  Supatra is of course eager to get back to school but we still need to discuss the options with her head teacher as it will be difficult for her in school attached to her pump and IV bags.  Jason is extremely happy and has not stopped playing with all his toy cars that he missed so much.

Best wishes to all,

Jorg & family

Tuesday, 25 October 2011


A while back I promised to provide an update to our fundraising efforts so far and therefore this post will try to do that.  I would first like to say thank you again to all those that have helped us in the UK and in Canada.  Our UK friends have been exceptional in pulling together and giving freely of their time and money in order to help us with Supatra's treatment.  The support in the UK has not only been from UK citizens but from my co-workers at my unit who happen to be from all over Europe and North America.  In Canada,the fundraising efforts are just getting started by family members and my extended military family.  I am blessed to be part of a great military organization and team - E Tenebris Lux!

To date you have raised approx. $17,500  USD for us!  Wow!  And in only a little over two months.  Great job, great effort by all.  This will provide at least two plus months of treatment for Supatra.  This is a fantastic amount and it really warms our hearts knowing you care about us and my little Supatra.  Thank you so much to everyone.

The other day my mom called to tell me of her co-workers efforts to raise funds on behalf of Supatra and it just made me feel so good knowing that these strangers were willing to put in this effort but also their valuable time to help us.  My mother works at a Victoria British Columbia grocery store in Fairview Plaza called Thrifty's and her store manager, Jim Fuller offered to do a hot dog sale this last Saturday.  Mr. Fuller and other staff members came in on their day off and on a day with non-stop rain to cook and sell hotdogs for the benefit of Supatra.  Their tally for the day was approx. $800!  A very big thank you to these strangers that went the extra mile to help a family in need.

Every little bit helps and these individual contributions and those from fund raising events like the recent bake sale at Supatra's school, which raised over 850 pounds to this more recent hotdog sale are making a big difference.  We have also had some large donations from individuals whom I am not at liberty to mention by name but also deserve a huge thank you and hug from all of us.  However, soon we hope to kick off a bigger campaign to have Supatra's story told in a national UK magazine and in some local newspapers as well and therefore we hope that not only larger donors will come forth but that by spreading the word further a field more individual donations will also appear. 

Additionally, as we plan for future events it will be our intention to advertise them here on this blog and whenever possible provide some pictures as well. 

It is also worth repeating every once in a while that any funds not used should Supatra have to stop her treatment(s) will be further donated and spread amongst several UK cancer charities that have assisted us and also a charity that is directly involved in helping fund brain cancer research.  Further details will be advertised when that time is upon us.

Thank you to our English friends and thank you to our Canadian friends and family.

Best wishes to all,


Sunday, 23 October 2011

Going Home

Apologies for not blogging over the last few days as I truly had meant to do but there is always so much to do and by the time the kids are asleep the only thing I want to do is unwind in front of the TV for an hour before falling asleep myself. 

This last Tuesday we awaited with baited breath the results of the Burzynski staff meeting that would determine whether or not we would need to have this FDA form 1572 signed.  We did not receive any messages nor emails and so on Wednesday I went to the clinic as I had other business to discuss hoping to get an answer.  Surprisingly, the answer was that we would not need to have this form signed by a doctor in the UK although we had secured a private doctor that did sign anyways.  Of course the not surprising thing is that no one decided it was important enough to pass this announcement on to those of us who have been stuck in Houston for weeks because of this requirement.  Typical poor doctor to patient communication.  Thursday 20 Oct, we booked our British Airlines flight from Houston to London for Wednesday 26 Oct and we managed to get a pretty good price at that.  All told it will cost us $1902 for the family but the bad news is that BA only allows one checked bag per passenger on an international flight (unless you pay more) whereas most big airlines still allow you two bags each.  I have submitted an email to customer relations hoping that they will wave any excess baggage fees as we will have 4-5 bags and several boxes of medical supplies.  I hope they do, as we were told by the other two UK couples, the Bainbridge and Petagine's that their fees were waved.  The Bainbridge's and Petagine's flew home on Thursday and we wish them all the best and hope that we may one day be able to get together again.  I hope all goes well for their daughters Billie and Luna as they continue down their long journey of recovery and better health.  Although Billie and Supatra did not know each other that well, Supatra felt sad that Billie was leaving.  I think Supatra, like me and Punny, feel like we are always being left behind as families that arrived at the clinic after us leave before us.  Supatra misses home so much and I think her spirits will be much better when back in the UK and close to her school friends.

Yesterday we went to an amusement park in Kemah, Texas, just south of Houston on the coast.  We left the house a little late so we only managed a few rides and some supper before heading back home.  We also took Supatra off her steroids three days ago and since then has been very lethargic, tired and is sleeping a lot.  She has had no other side affects for two weeks now and so we believe that this might be to steroid dependency and a side affect of stopping the medication.  However, today she is really tired and does not seem herself and after speaking to the on-call doctor decided to put her back on a very small dose to see what will happen.  If she does not snap out of it I will increase her dose tomorrow after speaking with the doctor as I think we would need to put her on a larger dosage come Tuesday to prepare her for the flight home.  She will not be allowed to take her antineoplastons while flying and the side affects of being taken off of the antineoplastons all of a sudden can be vomiting and headaches.  Therefore, in order to reduce these affects we will reduce her antineoplaston dose by half for the Tuesday afternoon and evening dose and then take her off the treatment until we arrive home.  Then we have been told to put her back on the treatment starting with a half dose for the first day and then back to her full treatment amount if there are no side effects. I just hope she does not feel poorly on Wednesday as I would hate to see her like that when not in the comfort of our own home.  It will be a long travel day and night and I am sure we will all be very tired when we arrive in the UK. 

On Monday I have arranged an MRI scan for Supatra, her first since being on the treatment.  Please put in an extra prayer in that her tumour is getting destroyed and positively reacting to the treatment.  I originally had hoped to get her the appointment in Austin Texas at a clinic that was only going to charge us $1088 compared to the almost $5000 we paid here in Houston; however, they were booked up and so I called another Austin place and they quoted me $1500, still very good compared to the first time.  But I decided to search the Houston area again as I could not believe that Houston with all its medical facilities can not have a cheaper MRI price.  I lucked out and found one not too far from where we are staying and they will only charge us $750!!  I could not believe it and asked several times if there would be any additional hidden costs and they said no.  Now why could the Burzynski clinic not come up with this place for caregivers and patients?  I just can't believe we were sent to one of the most expensive places in Houston to do and MRI when we could have saved a bundle going to this place....sigh!  Anyways, we wanted to do it here if comparable to UK prices so that we would not be rushed into finding and booking an MRI in the UK immediately on our return.  This will give us some breathing room and let us settle back in at home, meet the doctors again and determine the best course of action with regard to supporting Supatra's medical needs while on this treatment.  One of my key worries now is finding the best method of getting Supatra's blood analyized in a speedy manner as the NHS is too slow unless they can do stat orders and I am not sure how fast a private lab can get the results back.  The Burzynski clinic needs the results on the day they are ordered, i.e. Monday, Tuesday, and Fridays so that the Burzynski doctors can determine whether any adjustments need to be made to the treatment protocol.  One good aspect is that the time difference will work in our favour.

Tomorrow, if Supatra feels better we will take her to the beach again as she wants to build some more sand castles.  This will likely be our last trip out as Monday and Tuesday look to be fairly busy as we do our final travel preps.

It will be good to be home again....

Best wishes,


Tuesday, 18 October 2011

17 Oct 11

We had a nice weekend and managed to do some activities with the kids and at least for brief moments managed not to think of our doctor issues and Supatra's disease.  On Saturday we traveled to Galvaston Texas about an hour from Houston along the coast to spend some time on the beach.  Jason and Supatra loved it although Supatra was again sad that this time she could not go swimming and couldn't just go running around without having to worry about her catheter, tubes, and backpack full of medicine.  I feel so sorry for her and can only attempt to comfort her by telling her that soon when she starts to get better she will be able to do all these things again.  Its the same when we go to the malls and see kids skating on the ice rinks.  She wants to go skating again so badly.  On Sunday we went downtown and checked out one of the parks we heard about.  The kids played for some time in the playground and me and Supatra played catch with a small pink ball.  But again there was an area with water spouts coming from the ground where kids can go run and splash and of course Supatra could not as she is not allowed to get her catheter and dressing wet.  Pretty much everywhere we go she sees other kids doing what she used to and is immediately saddened that she can not join in.  I feel so sad for her too. 

Although me and Punny are switching sleeping duties with Supatra every other night we are both getting very tired.  It is becoming harder and harder to wake up in the morning in time to do the IV bag changes.  Everyone just wants to get home.  We want our bigger house, Supatra wants to go to school, see her friends, and be there for Halloween and Jason...well he just misses his toys and the room to run around.

I still can't believe that we are going through all this and that Supatra's recovery is not a given.  Considering its been almost six months if not longer since her symptoms progressed to the point where she is at now and it almost seems normal now while at the same time each day I look at Supatra hoping to see some positive change; a little movement at the left side of her mouth or her left eye lid moving at the same time as her right.  Its the reversing of her left facial palsy symptoms that will make Supatra so happy and would confirm to us that the antineoplastons are working.  I said to Punny the other day that I thought Supatra was walking a little better i.e. not with such a dramatically wide gait but more normal.  I don't know if it is just wishful thinking on my part or if there actually has been a change.  I just pray everyday that Supatra will be one of those few that actually recovers from this tumour, that her life will be full of joy and that she will be able to flash that cute smile of hers at me once again.

Best wishes



Saturday, 15 October 2011

14 Oct 11

Today I had to go to the clinic and ended up meeting another parent from Texas who's daughter was cured of her cancer a few years ago.  The child had cancer of the gland (which one not sure) which then later matasised (Sp?) to other parts of her body.  This cancer was detected at about six months old and instead of doing the standard treatment regimen of chemo and radiotherapy he choose to try Burzynski's antineoplastons.  She was on the treatment for three years and finished it in 2009.  His daughter is now six years old (I met her as well) and enjoying life.  This guy drops into the clinic every once in a while especially if there are children being treated and he and his daughter big gifts and get well cards for the kids and makes himself available to discuss his experience and provide advice.  I spoke with him for a good 30-40 mins and he gave me some valuable info on where to get a cheaper MRI scan, which Supatra will need at the end of this month.  He was a very nice down to earth guy that spoke candidly about his experience.  I also spoke with the Bainbridges about doctor support and they assured me that their doctor that has already signed the FDA form is a paediatric oncologist working for the NHS.  They also stated that as far they know he went through appropriate NHS channels to get the OK for this.  Therefore there should be no reason why other NHS doctors are turning this down.  The difficulty now is to get him to agree to release his contact details that I could then distribute to our doctors in the hope that this would be enough to convince them to support us.  So far he has not yet responded to the Bainbridges request and they of course do not want to push as this might cause second thoughts for whatever reasons we do not know about.

Supatra was in a down mood today and pining to go home to England to see her friends again.  She also does not want to be here for Halloween and would rather go trick or treating with her school friends, Isabel, Oli, Michael, etc.  At one point she was crying in my arms and then did not want to leave the bed.  We had to find something to help cheer her up so we told her we would go to the mall and let her ride on the carousel and play in the play center.  First though, we took her to the doctor to have her ear and nose checked out as she has been complaining of a blocked nose and right ear.  The doctors had to rinse her ear out to reduce the ear wax, which worked, and her nose was better as she managed to unblock it on her own.  When Supatra first underwent radiotherapy and took steroids she developed a repetitive habit of pulling at her lip on one side of her mouth.  When we finally got her to stop that she developed a habit of picking at her left nose which then developed into a sore that would constantly bleed.  We have now finally, I hope, got her to stop that but a few weeks ago she developed a habit of rubbing the corner of her left eye which also started to become a small sore.  Now we are trying to convince her to twirl her hair instead of these other destructive habits.  Supposedly this is normal for kids in her condition as one of the other UK girls has also developed a nasty habit of rubbing at her left eye and the skin around it is bloody and raw from this as well.

After the doctors we then took both Supatra and Jason to the mall as promised before coming home for supper.  Tomorrow we are going to try to go to Galvaston for the day and walk the beach some.  Hopefully, it will be a good trip and the kids will forget their woes.  Below are some pictures of Supatra and Jason playing in the apartment and with Supatra already in her Halloween costume which she has worn for three days now.

We have also heard that Supatra's school, Milton CE Primary, held a bake sale for us with teachers, parents and Supatra's friends and school mates helping out.  I heard from Chris, Michelle and Natalie that it was a great success.  As you can see from the pics below the food looks great and both me and Supatra would have really liked to try the second prize cake and the flag cake :)  Thanks to all those that participated and made it happen with a special thank you to the head teacher, Mrs. Dorrington for all your support.  Supatra would love to be involved in the next bake sale and wants to cook some cakes herself.  She is really getting interested in cooking lately as she helps prepare her meals here.  Supatra gives a shout out to all her friends and misses you all - please pass that along to your kids.

Warm wishes and have a happy weekend all.




Friday, 14 October 2011

13 Oct 11

Well, we're still here in Houston waiting for a UK doctor to step up and help us.  Its been over three weeks since we first approached our local surgery and they are still dithering and can not even give us a clue as to when they might make a decision.  We have also sent out about 8-10 emails to various other private clinics, hospitals, and doctors to try and find someone without luck so far.   Is there anyone out there willing to help a six year old girl stay alive or are you all just worried about yourselves and the NHS cover your ass stance?  I just can not believe the medical profession these days.  In America they try to wring you dry of your life savings before doing anything for you and in the UK no one is willing to try a treatment or in this case just support the patient with regular run of the mill medical support just because its not a mainstream clinical trial.  Listen doctors!  You are not offering my daughter anything else but death.  There are no other clinical trials available for her so get off your high horses and help us out a little.  We are willing to sign waivers of responsibility, we are willing to pay for everything.  What more do you want?

Can anyone help in the UK?

We are getting so fed up with this BS that we are now ready to fly the family to Thailand.  Punny's brother has already lined up a doctor, a place to stay, a nanny, and of course Punny's relatives and family are ready to assist. 

End of rant

Supatra continues to do well and has not been sick for several days.  We are now considering reducing her low steroid dose to once a day to see how she reacts.  We are starting to get used to the routine of doing a change bag in the evenings and then prep the next days bags in the morning after her last dose.  It was too much to prepare all three bags at once so we had to break it up this way.  Of course, every Monday, Wednesday and Fridays we also have to draw blood from her catheter and deliver it to a local lab for analysis.  We are getting tired as well, not only from the sleepless nights when sleeping with Supatra - we take turns, but also from being in this very small apartment with none of the children's friends around.  Today we went to the Houston Space Center to get out of the house and had an interesting tour.  Unfortunately we got there a bit late in the day and did not have time for much else other then the tram tour.  Supatra is also eager to return to the UK to go back to school and to enjoy Halloween with her friends.  Its so hard on the kids and they are starting to complain that they want to go home.  Its hard to keep my spirits up knowing that I will likely have to send my wife and kids to Thailand and not see them for long periods of time.  What happens if the worst happens with Supatra and all I get is a few weeks with her before she leaves us?  I would be heart broken not having spent more time with her.  We also have to think of Supatra because whether Houston or Thailand she will still not be with her friends and on top of that have to live in a country she has only briefly visited a few times before.  This really is a no win situation and we must therefore find a doctor, someone, that is willing to sign this FDA form.  I have been told it could also be a Homeopath doctor or a Pharmacist, it doesn't really matter as long as there are doctor credentials attached to the name.  Why, because the local surgery and Addenbrookes doctors are still obligated to look after Supatra and hence we would still be able to get her examined and have her blood analyzed privately. 

On the fundraising side of things we are receiving periodic contributions and I feel so grateful when I see those that I know contributing to help Supatra and us out.  We really have some wonderful friends, co-worker's and acquaintances.  Supatra's school will be holding a bake sale, I think on the 14th October and we may be getting our story told in a UK magazine soon.  We have some close friends that have taken on the responsibility of directing and organizing our fund raisers for us - thank you so much Natalie and Michelle.  I am getting more confident that we will be able to raise enough money to keep Supatra on this treatment as the days go on.  So many people to thank....

Warm wishes to all...even doctors:),


Monday, 10 October 2011

Info for New Burzynski Patients

This post is for those caregivers or patients who are considering undergoing the Burzynski Clinic's antineoplaston treatment.  I am posting this as there were a few surprises for us after we started Supatra's treatment that ended up costing us more then we had anticipated.  Some of these additional costs are valid ones that the clinic and others have charged us but there were also some that they should not have.  Additionally, we do not dispute the need to pay the legitimate additional costs but have issues with the fact that some were not explained at all and others not well enough explained and therefore it impacted our financial planning and forecasting that we did in preparation for this trip.

The medical costs (excluding travel and living costs) we have incurred to date are listed below and then followed by explanations where one is warranted further on:

1.  $1,500 - Burzynksi's initial application and consultation fee.  No surprises here as this was clearly explained to us in advance.

2.  $21,846 - Initial deposit to begin treatment, that includes $7,000 for the infusion pump.

3.  $3,805 - cost of Hickman Line (catheter) insertion. This is charged by the hospital conducting the surgery and is not done at the Burzynski clinic.

4.  $4,749 - Cost of baseline MRI scan needed to start the antineoplaston treatment.  This scan is not done at the Burzynski clinic and is outsourced.  Our follow-up scan after doing some searching around in Houston cost us $750.00!

5.  $5,000 - Extra cost of initial training and treatment at the Burzynski clinic.

6.  $7,600 - First months case management fee that must be paid before leaving the Burzynski clinic for home.  Once you have been checked out of the clinic after your training this will be a monthly fee incurred by the patient on a monthly basis.

If you undergo this treatment you should then plan to spend at least $45-50,000 dollars in the 3-4 weeks.  You should, however, continue to read below as some fees can be higher whereas we just managed to get them cheaper during our stay.  Additionally, this amount does not include travel expenses and then living costs in Houston while you are here for the initial training to include; transportation, hotel/apartment, car rental, food, special supplies needed for patient, etc.

Further details on our experience and costs outlined above:

#2.  During our communication before coming to the clinic we were told that they would need an initial deposit of $18,000 that would include Burzynski related training and treatment costs and the cost of the $7000 pump.  When I questioned the word "deposit" and asked how much I can expect to pay for the first month I was told that on average most people incur an additional $4-5,000 in expenses and so I should count on about $22,000 cost for the first month.  On arrival and paying the first deposit I asked for a breakdown in the $21,846 requested of me and was told that approx. $1600 was for supplies, $2440.00 was for lab work, $7000 for the pump and $10,000 for other stuff.  When I questioned the other stuff and asked for more detail the financial lady could not give me anything else, fumbled around her office for some paper that would explain the cost and then just said it was for 'you know' other costs such as the doctors, training, etc.  Because the amount I was giving was close to the $22,000 told to me earlier I thought that I would not owe anymore until we needed to start paying the monthly case management fee.  When I was given the receipt it said it was an estimate and so questioned that and was told that there may be some unforecasted additional costs that might need to be paid at the end of our training at the clinic.  Then during the training we were given a set amount of medical supplies and told that whenever we started running low we just need to ask for more and there would be no problems (indicating that its all included in this $10,000 and that we were covered).  During the training whenever I asked for more supplies the nurse would say 'ya,no problem, its all paid for by you' (again,thinking this was covered under the $10,000 part of the deposit) and hand me a handful of stuff.

The problem arose when we were close to finishing our third week (on a Tuesday) and we asked to see the financial lady to ask her something not related to the above.  When we arrived in her office she typed in our details in her computer and said 'right now you have a balance owing of $4,000'!  We were totally shocked and asked what for and she stated that these are costs that we have incurred since starting the training.  She then produced a detailed list of expenditures, i.e. all the supplies we were given to include a $1.50 metal clip that I do not even recall receiving or needing, lab work, doctors calls (they come to see the patient every morning), training, any after hour calls we made to the clinic, and a daily $395.00 charge for the overall treatment program.  I was flabbergasted to say the least as I pointed out to the lady that I had asked for a detailed explanation of the $10,000 on the first day and she could not explain anything, yet here she is giving me a detailed list of costs that are deducted from the deposit.  Of course we started arguing with her demanding to know why we were not told that we would be incurring such significant cost over runs and why the clinic could not come up with more accurate estimates of the first three weeks costs after having treated thousands of patients.  Needless to say we asked to be discharged immediately so as not to incur any other additional charges and considering we were at the end of our three week training session.  We then raised this and other issues with Dr. Burzynski when we had our discharge meeting the next day.

What new patients have to know is that everything you do and get at the clinic you will be charged for.  Each day when you see the nurses for training they have a supply list and as they use something or give you something to use it gets added to this list which is then submitted to accounting.  Additionally, demand a detailed print out of costs that you will be charged so that you have this ahead of time.  Second, if the patient is a child, question the need to stay for three weeks as is stipulated in their literature as there were other parents checking out after only 10 days and we were already wondering why (it seems that the other financial accountant is much more forthcoming with costing information then the lady we had).  You should also check the itemized list of costs as we and others fund errors in the bills - not big differences in the end but differences none the less.  As an example, for the last week or so we were drawing the blood from Supatra on our own but at the clinic and they charge a $20 fee for this; so we had this removed.  Some more examples of costs charged by the clinic to you is:

$100 each time the doctor sees the patient
$95 each time you call the clinic out of office hours with a problem
$60 each day for training
$20 drawing blood
$395 per day for the treatment program
all lab work and then any supplies you use to include the IV bags the antineoplaston comes in.

We took our time with the training and could have checked out a lot earlier, however, we were under the impression that this was all covered under our initial deposit.  Had the financial lady been more professional, explained everything at our first meeting and approached us a few days ahead of exhausting our deposit to let us know, we could have checked out and saved the additional $5,000 we paid.  So don't take your time,learn as fast as possible and get your selves released.  However, keep in mind that part of the release procedure is to see your financial lady and be prepared to pay any outstanding balances and start paying your first monthly case management fee of $7,600.  Really the $22,000 first months cost is not really for the first month and will in actual fact only last you the first two weeks!  Again, they must be more forthcoming and customer friendly by communicating the actual expected costs to potential clients and not snow them with totally out of whack estimates.

#3.  This cost has nothing to do with the Burzynski clinic as they do not conduct Hickman line (catheter) implants and it must be arranged either before coming to the clinic or in Houston at a local hospital when you arrive.  First, if coming from outside the USA ask your Burzynski rep to try and arrange this ahead of time if possible.  This may not be possible for some patients especially young children; however, we managed to get an appointment with a local clinic surgeon the day after our first visit to the Burzynski clinic who then approved the procedure for Supatra the very next morning.  Cost for the Surgeon's appointment and surgery $1,213.00.  The surgeon conducts the surgery at a local hospital which must be paid as well.  I was whisked into the administrators office before surgery and given an estimated bill of $2035.00 for the hospital costs.  When I questioned what additional costs I could expect she stated that there would be a separate cost for the anesthesiologist (our anesthesiologist costs was $579) and any other drugs or medical supplies that might be needed during surgery.  I was OK with that.  I then waited for a bill at our Houston address.  When not receiving anything I called asking for a final bill and was told that it would be around $10,000!  I nearly flew through the roof and was immediately asking for an explanation of why it cost so much compared to the estimate given to me.  They told me that that was the cost and the $2035 was only an estimate....blah blah.  When I interrupted and said that you can not give such a low ball estimate and then slap someone with hefty bill, he just kept saying that that is what it cost.  I then stated that I would not pay, that I was quoted $2035 with some possible other expense and that the estimate was totally unrealistic compared to what they were trying to charge me now.  Before hanging up I told them that they can pursue me in the UK if they want to but I would not pay.  They then called me back about ten minutes later and said that they found some 'clerical errors' and that they would only charge me the first quoted estimate amount.  All's good, although I am still waiting to get the finalized bill in the mail!

I found out later from two other UK couples that came to the clinic after us that they were sent to a different hospital and they had to pay $10,000 each.  The moral of the story is to ask and keep prodding the clinics and hospitals you are sent to to determine what the final costs of any procedure will be and don't be afraid to negotiate with them ahead of time as some will reduce prices especially if they know you are not insured (called self pay).  Last, don't be afraid to play hard ball and refuse payment (after the fact) as all medical establishments in the US (as I have been told by other Americans) are out to steal your money with outrageous quotes, deposit demands, and final bills that they stick people with.  I just don't understand how Americans live with this system?

#4.  This cost is not associated with the Burzynski clinic and appointments must be arranged once in Houston.  The costs for this procedure can very widely as well.  As an example, if your child is too young or uncomfortable undergoing an MRI scan then they must be sedated and this costs quite a bit more.  Our cost was as advertised and we had no surprises here other then the fact that it is so expensive.  This same MRI scan would have cost us 5-600 pounds in the UK at a private hospital.

#5.  This was the extra costs we incurred for three weeks of training and treatment at the Burzynski clinic.  My complaint here is that if this is the average cost, as we had no out of ordinary situations that required additional expenses, then why can't they provide more accurate quotes of the first three weeks cost to perspective patients?  In fact, why do they even say that the quote is for the first month as it clearly is not even for three weeks.  We ended up doing 22 days of training/treatment and could have easily been finished within 10-12 days.  Be aware of this and get your training finished as soon as you can and go through your bill item by item to ensure you are not being charged for something you did not get or use.

#6.  This fee is a case management fee charged on a monthly basis.  You can check with the Burzynski rep you are dealing with or on their website to see what this fee covers.  The key point is that it is supposed to be a once a month flat fee and therefore you should not be surprised with other fees or supply costs.  The only caveat to this is if you dramatically exceed what you are reasonably expected to consume in supplies then it will start costing you, but again the financial person or supply person you deal with at the clinic should be letting you know this ahead of time.  Additionally, their literature and their rep provided me with written documentation that this monthly fee would include shipping costs.  Shipping costs can be very expensive as the antineoplaston is a liquid and hence heavy.  As an example, we were quoted a cost of approx. $1000 to $1500 for shipping a months supply to the UK.  Why were we shown this cost?  Because after arriving here they tried to play a fast one and tell all the clients that shipping was an extra cost as they were being released from training.  Everyone of course complained and I showed them written proof via emails and some of their own documents that stated otherwise.  Then they stated that this only recently came about because it costs too much to ship the stuff; however, we are not their first clientele - how could they not know this already.  Second, since when does a company just dramatically increase their prices without forewarning their customers and then when it is increased continue to advertise otherwise?  Its just not done and as far as I am concerned this basic business fundamentals, unless of course you just simply do not care about your patients and want to be bad mouthed on the Internet.  In the end, after all our complaints the prices stayed the same at $7,600 per month.

Final comments:

It is important that when you decide to undergo this treatment, and I do think it is worth trying, make sure you ask questions and if possible get things in writing.  To be sure, I did this but yet was still led a stray.  The clinic PR guy assured me that he would rectify some of the issues I raised but in order to make sure that others are not blind sided like we were I have written this post for others to see.  I hope it helps and hope that should they just be blowing sunshine up my know what... that others will see this and keep them on the up and up and hold them to account.  As I stated to them, all I want is an honest up front approach of what the costs are and what additional costs we are likely to incur so that we can make an informed decision and plan ahead with regard to sourcing funds.

I hope this outline will help others to understand what they can expect to pay and to watch out for the US medical establishment as they charge extraordinary prices for their services, which would cost much less in other countries, even on the private sector.

Warm regards,


Saturday, 8 October 2011

7 Oct 11

Its been a busy week and it has kept me from posting for a while.  Supatra's condition is the same with energy to do a few activities during the day mixed with drowsiness during and immediately after her infusions.  She also vomited again and complained of a mild headache yesterday evening about the same time as the previous two times but felt much better afterwards.  We continue to keep her on two small doses of oral steroids a day plus all the other herbal pills she takes each day.  Each day this week we seemed to spend more and more time at the clinic as her last dose goes in a little later each day.  Part of the problem is that we are so tired that it is hard to wake up early and get every one out the front door and to the clinic in time for us to move up the start of the next dosing cycle.  On top of this we can only start the dose cycle 30 mins earlier every 24 hrs, so if our timings get pushed to the right and we want to realign it to the left, it can take several days to get it back to the preferred time in the morning.  As well, every Monday, Wednesday, and Friday we need to submit her blood work to ensure her electrolytes are balanced; however, you can only draw blood 1.5 hrs after the last dose in the 24 cycle.  As an example, our 24 hr cycle currently starts at 1050 with the next doses coming at 1450, 1850, 2250, 0250, and 0650.  Each dose takes 2 hrs and 11 mins to go in, which means the last dose starting at 0650 is not finished until 0901 and then if it is a day for drawing blood you can not draw it until 1030 (1.5 hrs after the last dose is finished).  In this instance you could start the patient back on the next 24 hr infusion cycle at exactly 1030 and only move the timing to the left by 20 mins.  But again it is not as easy as that because when you are at the clinic there are other things going on and interruptions which can delay that start time.  The other option is to move the timing 30 mins to the left when you need to prepare IV bags for the next day and do a bag change but it is taking us a good 1.5-2 hrs to prepare these bag and we only have a 1 hr 49 min window between doses when we can do this.  Today we managed to prepare the bags faster and move the time up 20 mins  and tomorrow we will try this again until we reach the preferred last dose start time around 0530-0600.

On Tuesday we had some issues with the Burzynski accountant when we found out that we had already burned through our initial deposit even though I was under the impression that this deposit would cover us for the full three week training term.  They did not even have the courtesy to let us know that we had a $4,000 balance owing while we are showing up there everyday taking our time as we figured we were covered for the full three weeks.  I will write a separate post on this issue and a few others that we raised for those that will come after us to the Burzynski clinic so that they have all the facts before they come.  The Burzynski staff to include Dr. Burzynski his son, a doctor and Vice President of the Burzynski business, and their IR spokesperson all listened to our complaints and agreed to reactify some things and improve their services while deducting some minor expenses that we had issues with.  Hopefully my post on this will be helpful to others so that they do not experience the same problems as we have had.

On Wednesday I also helped one mother and her daughter get to the airport as they were finished with their training at the clinic and then two hours later had to return to meet my sister Christine and my mom at the airport.  Additionally, on this day we started the discharge procedures so as not to incur any further costs at clinic.  This carried through until Friday although normally the discharge process only takes one day when arranged in adavnce.  However, because of the financial surprises thrown our way by the clinic we told them we wanted to leave ASAP and start treatment as out-patients on a flat monthly case management fee of $7,600/month.

Supatra and Jason have been really happy with all the attention they have been getting from their Aunt and Grandmother.  They have gotten lots of presents and new toys and are having some quality play time which me and Punny have not been able to give them of late.  Today (Friday) we took the kids to a big Halloween store to do some Halloween shopping for Supatra.  She has been eagerly anticipating this since we arrived in Houston and first spotted the store from the highway.  Tomorrow we will attempt to go to the Houston Space Center and it will only be our third day since our arrival that we will not need to go to the clinic in the morning.  In fact, having been discharged we will not need to go back at all unless of course there is a medical necessity to do so.  From now on we will be doing everything at home as if we were in the UK and we will be taking her blood work to a local lab for analysis as this costs less then what the Burzynski clinic charges.

This week we also contacted some of our close friends in Cambridge to let them know we will need to start our fundraising campaign in earnest because of the additional costs we have incurred at the clinic.  We continue to get contributions from friends, family member's co-workers, and my co-workers at RAF Molesworth and from Canada.  We appreciate the effort everyone is putting forth on Supatra's behalf.  We are also engaging with a charity in the UK that we may be able to set-up an umbrella organization under in Supatra's name so that we can use their charity number, which will then mean that contributions to this charity will be tax deductible and hopefully attract some larger donors.  The charity (I won't mention them until all agreements are in place) will then put these donations in a separate account for us and then pay all medical and medical related bills directly to the biller.  They are already doing this for the two other couples from the UK who are currently here at the Burzynski clinic getting their children treated as well.  The only problem with this set-up is that they can not reimburse us for money already spent and they will only be able to pay for bills once we have raised money and there are enough funds in this separate account.  However, if it attracts bigger donors then at least we can see some light at the end of the tunnel for future expenses that we will surely incur.  We may also set-up a web site and move the blog there but we are still thinking this through as I know absolutely nothing about setting up websites nor do I necessarily want to increase our burden with the maintenance of said site. 

We continue to await word from our local doctor to see if she will support us and it has now been two weeks since we sent her all the information.  Last word I got was that she was still reviewing the documents but I am starting to think that the answer will be no.  Earlier this week we started to ask a few others within the medical community to ask around on our behalf and hopefully something will come of it.  We are also asking the other two Uk couples to contact their doctors to see what may be possible with them. I am still hopeful that we can all return by the end of this month as I really do not want to leave Punny and Supatra alone here.  Not only will it be a lot of work for Punny to take care of Supatra on her own but it will also add to our financial burden.

Thanks to all those that have donated money for Supatra's medical treatment.  Unfortunately there are too many this week to mention but rest assured we are very grateful for everything.

Best wishes and have a joyful weekend.


Monday, 3 October 2011

3 Oct 11

Supatra seems to be showing side affect symptoms as she vomited late on Saturday after drinking some apple juice.  She did not show any other signs of other side effects though and we wrote it off to the acidity of the juice not agreeing with her as she has had a change in dietary tastes.  She used to eat lots of apples and strawberries but now does not like them and she is now also eating more greens which she never used to like.  However, on Sunday evening we were invited to have supper at Nikki and Ben's house and she vomited again.  After speaking with the after hours doctor he agreed with our initial reaction which was to give her another small dose of oral steroids and told us to do so again if symptoms persisted.  Luckily, after the incident Supatra felt better and we put her to bed early after we arrived back home.  I have also noted an increase in muscle weakness as she struggles to get in and out of the car and climb onto the bed.  I hope that this is all part of the antineoplaston affects as we were told that her symptoms would likely get worse before getting better again.  This is due to the antineoplastons working to breakdown the tumour and while doing so it increases the likelihood of pressure build-up within the brain and particularly around the tumour area.  It seems like we have been here forever already but it is only three weeks of treatment so far so I guess I will need to be a bit more patient.  Our sleepless nights are increasing and we are now taking turns sleeping with Supatra as her constant need to drink water and then urinate keeps us all awake.  Of course, as stated before, this is a wide open apartment so even sleeping with Jason in the living room means we can hear everything that happens in the night.

We are still awaiting to hear from our local doctor and I put a call in to the practice manager to see what was up; however, she did not know but told me that she would check again with the doctor and send an email back today.  This did not occur and it is now evening time in the UK so we are again waiting until morning to follow-up.  Tomorrow morning I will also contact another doctor whose name I was given that might be able to help find someone for us. 

Best wishes to all,

Saturday, 1 October 2011

1 Oct 11

Its been a few days since my last post but we really have not been doing anything exciting and Supatra's treatment continues on schedule and she should reach her target dose by Monday 3rd October.  Supatra is handling the treatment very well although the constant peeing is driving us and her nuts. It is making it very difficult to plan a day out with the kids.  Today we were going to go to Galveston to spend some time on the beach and explore the area but after waking up late (we did not have to go to the clinic today) and with Supatra's IV bag change scheduled for around 4pm it is not worth it.  Now the plan is to go downtown after lunch with another mother and daughter, Leyel, from the Burzynski clinic.  Supatra and Leyel are of the same age and have the same tumour.  They are starting to become friends which is great.

Every morning after her last (sixth) dose each 24 hrs we disconnect her from her pump and IV bags.  This allows Supatra some freedom for 1-2 hours prior to our clinic appointment each morning at which she then gets reconnected.  Supatra is very happy when she gets disconnected from the pump in the mornings and she dances around singing 'I'm free, I'm free'.  We could disconnect her after each infusion and then reconnect prior to the next infusion cycle but it is not encouraged as this can increase the risk of infection through tube and catheter contamination.  Over the next week, I think the mornings will become a little more relaxed as they start to allow us to change IV bags, dressings, and draw blood from home rather then having a fixed appointment at the clinic each morning.  This will further prepare us for our journey home to the UK because once there we will be required to do everything anyways.

Yesterday I also had the opportunity to meet two other couples from the UK who now have their daughters undergoing antineoplaston treatment.  It was good to finally meet them and exchange some information about doctor support in the UK, fundraising and other experiences that they have had.  We still have not heard from our local doctor and will wait until Monday before making some calls.  If there still is no answer I will start to engage some other contacts I have been given.  Time is running out for me as I will have to return to the UK no later then end of October and of course we also still have to book return flights as we came on a one way ticket not knowing when we would return.  The next concern will be to find a good return airline ticket price but one that will also wave fees for excess baggage as we will be traveling with at least two weeks supply of Antineoplastons.  One bag is 1 ltr and the other is 250mls and she requires two of the 1 ltr bags and one of the 250ml bags each day.  Therefore a two week supply will be very heavy plus all our own baggage that we came with.  Does anyone have any connections with an airline that might be willing to help us out??

Again, I would like to acknowledge some folks that are raising funds on our behalf.  My sister Christine, her work colleagues and business contacts and friends of the family, the Kaufmann's in Toronto.  Thanks for the support.