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.

Supatra's Port-a-cath.