Saturday, 10 September 2011

7 Sep 11

Today was our first appointment at the Burzynski Clinic at 0930 and we immediately were made to fill out some additional paperwork as with any new visit to a medical clinic.  The staff were friendly and helpful in explaining exactly what would be happening on this first visit and warned us up front that it would take the better part of the day.  Of course having just arrived in Houston we had not yet had a chance to find a babysitter or daycare center for Jason and this would make the latter part of the day difficult.  After the paperwork we were ushered into an office and told that we would be meeting two doctors separately before Burzynski would review Supatra's file and then they would all come and sit with us together to explain more about the treatment procedure and provide us a chance to ask questions.  In between all this the staff also took all of Supatra's particular physical measurements and weight.  By approx. 1130 Burzynski and the rest of the doctors came into the office and Dr. Burzynski proceded to explain some very basic information about the anti-neoplaston treatment.  To be honest he did not really tell us any more then what was already available from his website and I think Burzynski's presence is more for show then anything else as the other two doctors answered most of our questions.  They did confirm that Supatra would need the antineoplaston IV treatment vice the capsules that they also use to treat other cancers as that was what worked best on her type of tumour.  We were then asked to sign some more consent forms and waited some more for the next steps.  We had time to go downstairs to eat in their only dismal little cafe after having been there all morning (something they should try to improve upon).  After lunch I was asked to go see the finance clerk and was given a breakdown of the costs involved for the first two months of treatment. 

The costs are as follows:

Medical rrecords review fee (initial application which we did before coming to Houston): $500.00
Initial consultation fee: $1000.00
Labratory Deposit: $2850.00
Treatment Deposit: $10,000.00
Supplies Deposit: $1,600
Second months treatment cost (and cost each month thereafter): $7,600.00
New infusion pump: $7,000.00
Catheter insertion surgery: $3955.00

On top of this would be a charge for Supatra's initial MRI scan which is not yet scheduled.  The costs were not a surprise as these were explained to us prior to coming to the clinic but I did question some of the expenses that were further specified under the above headings which I feel should be discounted at least for the first two months because we are within the local area.  These included items refered to as fees associated with being outside of the Houston area and considering we are now "local" and not international they should not be charged but they would not budge and stated these were already discounted prices compared to what insurance companies are made to pay.  I was also told that I would need to pay and then make my own claim with my insurance company which is not what their international cliental representative told me.  Either way we came prepared to pay and want to at least try this treatment for the first two months and wait for the results from the initial post treatment MRI scans.  If they show no affects then we can always withdraw from the treatment and we will go with plan B which is to take her to one of the main Cancer treatment centers in Houston and see if they have something else on the go that could help Supatra.

In the afternoon we had some additional examinations for Supatra to endure and they made an appointment with a surgeon the next day to discuss the catheter insertion.  It was a very long day and Supatra was at her best again although she and Jason started to get on each others nerves and Jason became very tired.  Punny had to stay downstairs in the picnic area as Jason fell asleep while I continued with the program upstairs with Supatra.  We ended up staying at the Bruzynski clinic a total of 7.5 hours and we were all tired of the process by the time it was over.  I am very disappointed that they do not tell parents more about the first days process so that arrangements can be made for siblings and extra things like bringing toys or snacks could be suggested for parents.  The clinic had nothing for kids; no toys, no books, no TV - nothing and I think that is just wrong.  I will definitely let them know my feelings on this when I fill out thier client survey.

Overall, although the staff were friendly and pleasent, I was not overly impressed but we have met others attending the clinic and the place we are staying at rent entirely to Burzynski clinic patients and they have heard nothing but positive things from their clientale and currently there are two other older patients staying here as well one of whom we have already spoken to.  We have made our decision to continue on - as if there were any other options anyways - and like I said above, wait for the first one or two MRI scan results to determine whether the treatment is working or not.

Supatra's first day at clinic.
After four hrs Jason could no longer stay awake.

8 Sep 11

The only appointment we had for today is our 6pm initial meeting with the surgen that will do the catheter insertion, so we spent the day trying to open a bank account and doing some more shopping for food and other small houshold items we require for our stay here.  It was a good thing too because I don't know if I could have handled another day of sitting around and waiting in a place with nothing to read or do or even have a decent cup of coffee.  Jason and Punny stayed home while I went to the surgen's clinic with Supatra later in the day.  The surgen was happy with everything and scheduled the procedure for the next morning and we would have to be at the St Joseph Hospital by 0800 on 9 Sep 11 and Supatra would not be able to eat or drink after mdnight in preparation for the procedure.  I was asked to pay for the surgen's fee and asked them to call my Canadian Public Service Health Care Plan (PSHCP) insurers to see if it could be claimed.  They came back to me and stated that the PSHCP would not cover these costs as it was not an emergency medical situation incurred while traveling rather an existing condition.  Well, I was bowled over by that response as I was clearly told by my Canadian Forces employers that the PSHCP would cover me and my family for all medical issues while posted overseas.  Every claim I have ever submitted to this group has been declined and I don't understand why I have been paying into this plan for all these years and they support nothing.  Had I known that my family was not covered for life and death medical issues I would have gotten other insurance coverage.  Basically they are saying that my daughter getting cancer is not an emergency nor will they cover medical bills associated with her treatment.  Gee it must be because I "voluntarily" took her to the USA for treatment and that is their getting out of jail free card for them!  Like we really have a choice and like parents are supposed to forgo a possible treatment plan for a sick loved one because they would then be considered traveling with an existing medical condition. 

9 Sep 11

Today we woke up very early in order to get to the hospital for 0800 and which is located near downtown Houston.  Supatra was in a really positive mood and was not worried at all about the procedure, in fact, she was very pragmatic about the whole thing and excited about the possibility of getting her smile back as I had explained to her the other day that with this antineoplaston treatment, if it worked, it should reverse her left facial palsy.  She told me the other day after the surgen's appointment that she wanted her smile back because she did not like the way she looked in her photos in her current condition. 

We arrived on time and proceded to fill out the standard paperwork and deposit funds for the hospital costs.  By 0900 we were in the prep room and told that we were not a scheduled surgery but an addition to the days roster.  We then proceded to wait...and wait.....and wait.  Luckily there was a TV in the room but of course I did not think about taking Supatra's Nintendo DSI and she had nothing to entertain her as there were no cartoons or kids shows on TV.  On top of that she had not eaten or drank anything since 9pm the previous evening.  I was also hungry as I told her I would not drink nor eat while she could not.  By 1030 I asked how long it would take and they could not give me an exact time.  I then asked again around 1130 reminding them that Supatra was a six year old who had not eaten nor drank for 16 hrs.  We were told that we had to wait a little longer...and by around 1230-1pm they took her in to be sedated; I could not go with her and I kissed her good-bye, told her I loved her and asked if she would be OK going alone.  She said yes and did not look back once...WOW, six years old going with strangers to be operated on and she did not flinch once.  I was so impressed with her attitude.  Not only that but while we were waiting all morning she only complained twice about being hungry and it was me that did most of the whining about it taking so long!  My six year old daughter is showing me up... what a girl.

About an hour later I was called back in to go to the recovery room and be by her side.  The surgery had gone well and as I approached her bed she started to wake up.  She moaned a little and later as she was coming out of her sleep she cried somewhat and periodically, mostly due to the pain from the presure of the arm band needed for taking her blood pressure which I think was on a little too tight.  She was a little hard to console on occasion but it was to be expected after coming out of surgery.  We were in this room for about 1.5 hours and then moved to a departure room where they do the final preps for discharging patients.  Before leaving the recovery room they had to take an xray of her chest to ensure the catheter was inserted correctly and that everything was fine with Supatra.  Supatra was a little protective of the various tubes extruding from her but after me and the nurse explained exactly what we were doing each step of the way she allowed us to continue.  Supatra even removed the sticker pads used for the the EKG machine monitoring her vital signs.  She is - sadly - becoming a real pro at this hospital stuff and I keep praising her for the maturity well beyond her age that she shows.  As she finally came out of her anestetic daze she stopped all complaining and was back to her normal mature self never complaining about a thing as we went to the car and drove home even though she now had a tube sticking out of her chest. 

Since coming home we have made her as comfortable as possible and she is now on a reclining sofa watching her much beloved Disney channel.  Her catheter insertion point should heal within the next 7-14 days and we have a follow-up appointment at the Burzynki clinic tomorrow (Saturday) at 1000 for them to check over the catheter and probably talk to us about catheter maintainance over the weekend.  Supatra's next big hurdle will be the start of the treatment next week and our training of how to work the pump and maintain the catheter site.  We have already been told that we will be expected to attend the Burzynski clinic every day from Monday to Friday for the next several weeks in order to learn our part and to slowly increase and adjust the antineoplaston treatment.  Today Punny also found a babysitter nearby to where we live, refered to us by our landlord.  Its a nice place and the lady is certified and charges a flat $100.00 per week fee which is not bad at all.  So the plan is to drop Jason off at the babysitter while the rest of us go to the clinic everyday for the treatment and training.

We do have some pictures of the cruise and Supatra's catheter and we will endeavour to upload them to the appropriate posts in the coming days; however, I must stop at this time for some supper.


  1. I'm following you all as much as I can. This little girl is teaching us how to behave, how to support every single part of the treatment without complaining...Waaaa! I imagine how difficult your life is, don't give up! You have a lot of friends worldwide supporting you by thoughts!

  2. Wow - what a brave little girl. She's amazing. I can't imagine what this is like for all of you. Much love, Marcus, Mie and family

  3. Jorg, Punny, Supatra and Jason,

    I can't imagine where that little girl gets her strength! I wish I could hug you all, but will hopefully do so soon when Mom and I come to Houston.
    Much love and kisses
    your Big Sis