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.