Our trip to Indianapolis in November 06 went very well. On the 29th of Nov we went to the Riley Children’s Hospital where we met Dr Robertson his nurse Mary Hesskett and a friend that was made on the internet Lynzee Cullum along with her mum Dorothy. Katie under went an MRI, echocardiogram and lots of blood tests. We were then given a whole batch of Gleevec, and shown scans of before and after of a little girl who has used Gleevec, the results were encouraging as the tumour in her neck had shrunk right back. we had to buy some anti sickness pills that is used with the Gleevec (zofran) and these tiny little pills cost $140 for only 5 single pills, i never knew pills could be so expensive.
http://rileychildrenshospital.com/
Katie Started her Gleevec and on the first night she had a little dizziness but this passed really quickly. After the second day of taking the Gleevec Katie woke in the morning with a bright red rash, we had to rush back to the hospital to have it checked out. Dr Robertson started Katie on some steroids to counteract the rash and said this had been quite a common thing with people using the Gleevec, the only downfall was Katie had to stop the drug until the rash went.
While we was there Katie and her friend Lynzee had their photos done for an article for the Indianapolis times, they even made the front page, you can read the story here but sadly the photos have gone.
http://www.pharmacychoice.com/News/article.cfm?Article_ID=43725
On the 7th of Dec we went back to the Hospital and was allowed to start the Gleevec again, Dr Robertson went through her scans and remarked they were unbelievable and commented on how strong Katie must be. The scan showed he tumours are Massive, she has tumours on both sides of the neck, on the left side these are attached to nerves to the brachial plexus which has left her left arm almost non functional, on the right there is an even larger mass. In her Chest she has a very large number of tumours on both sides, extending from the lower neck into the thorax and down into both arms squashing the lungs, running all the way down her spine. She also has a large tumour in her abdomen and in her legs. Her tumours were difficult to measure because of the irregular contours and massive bulk of the tumour but they measured it to be 207cm in transverse dimensions.
Katie has been on the gleevec now for 4 months we sadly had to stop again for a couple of months because her left arm swelled to 5 times its normal size. We have just been back to Indianapolis again for her Six month Check. The scan showed no new tumour growth which was good news, but no shrinkage as of yet. Dr Robertson said they have not been seeing any shrinkage in patients taking Gleevec but the tumours are appearing to be softer. I have been informed that they are working to approve another 3 drugs to run as a trial for patients who do not respond to Gleevec. The good thing is that Katie is now back on the Gleevec with a little help from the steroids again.
While we was there i asked the doctors at Riley to take a look at her scans to see if there were any surgical options, a plastic surgeon said he could take the tumour of her face. We also went into see Dr McKay McKinnon a doctor in Chicago for his opinion as well, some of may of seen him on TV, he operated on a lady who had a 200lb tumour. He is currently in discussion with a team of surgeons to see if there’s anything that be offered, he said it may be possible to get some of the tumour out of the right side of the neck, the left has to many nerves to be touched and he is talking over with the chest surgeons to see if they can releave her left lung. This would of course improve the quality of live but it will have to be thought over very carfully with the risks weighed up.
Katie did get a little upset recently, she feels that she has no choice, and that she has to take the drug or have more operations because she don’t want to die. This was very hard for me because its the first time she has said something like that. I promised her that i will do everything i can to for her and accept whatever she decides to do. Katie however now is back to her old cheery self. The Gleevec is not causing her to many problems, she has had allot of hair loss but it is coming back as fast as she is losing it.
I will keep you all posted when i hear any news from the doctors, as you can imagine this is all very expensive and we need to continually fund raise to enable us to make these trips, we have to travel to Indianapolis every 6 months while she is on the Gleevec, so if any of you have any fund rising ideas please let me.
Thank you for reading.
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http://www.angelkatzs.piczo.com/?cr=4&rfm=v