Timecode: 22:10-28:48
KELSEY, SARAH (mother), and STEVE HILL (father) – on camera interview.:
They came back, they said she has this large baseball-sized tumor in her abdomen, and not only that, but it’s in her kidney—it was everywhere, it was in her kidney and her liver and her lungs. So here we are thinking, basically, this child has literally a few months to live, is basically what they told us. At that point they said, “well, we think we can get the original tumor out.” So they had this surgeon, he was able to go in, he got the whole tumor—she did lose her left kidney and her left adrenal gland. And it was four drugs, and it was like eight pages of side-effects and very little hope that they would even work. The drugs were: Mitotane…
ON-SCREEN TITLE CARD:
MITOTANE CHEMOTHERAPY: Appropriate studies have not been performed to find out Mitotane’s safety or effectiveness in children.
SARAH HILL VO:
… Doxorubicin …
ON-SCREEN TITLE CARD:
ETOPOSIDE CHEMOTHERAPY: Side effects: Leukemia, Nerve Damage, Inability to Fight Infections, Vomiting.
SARAH HILL VO:
… and Cisplatin.
ON-SCREEN TITLE CARD:
CISPLATIN CHEMOTHERAPY: Side effects: Kidney Damage, Hearing Damage, Nerve Damage, Infertility, Vomiting.
SARAH HILL – on camera interview:
… and they told us admittedly “this is the most toxic regimen that we have.” We have a six-month old with one kidney, and the side effects were kidney failure, hearing failure, leukemia—other kinds of cancers coming from this… and I was just like “even if she’s going to pass away, I can’t do this to her, I can’t, why would I want her last few months of life to be miserable?”
STEVE HILL – on camera interview:
I didn’t know what to do. I just knew that I didn’t want to put her through all that intense high-dose chemo and miss out on what might be the last bit of time that we have with her, because I had talked to my uncle—he’s in his 60’s now, but in 1969—my cousin, his daughter, was three years old and she got cancer of some kind. He told me about what that was like at that time. They just kept giving her more chemo, and more chemo, and more chemo, and then finally we had this long several-hour conversation one day and he told me, I asked him— because I was trying to prepare myself, I said, “what was it like when a doctor tells you, that’s it. We can’t do any more.”
My uncle Ray told me that for the last few weeks of my cousin’s life, they celebrated Christmas once a week. They had a Christmas and a birthday once a week until that was it. I was putting myself in his shoes, and I was just thinking, I couldn’t watch my daughter whither away, and at least I wanted whatever time I had to be happy. As happy as could be anyway—and not just watch her whither away from chemo that’s not doing any good any more.
SARAH HILL – on camera interview:
We had actually asked the endocrinologist at M.D. Anderson about Dr. Burzynski, and he told us “he was a quack, and that there was no evidence that it worked” but at that point I was like “well, yours doesn’t really work either.”
ON-SCREEN TITLE CARD:
MITOTANE CHEMOTHERAPY: Approved: July 8, 1970. Derived from DDT (insecticide).
STEVE HILL VO:
The other thing that I did, on the FDA’s website you can look up the day in which any drug was granted FDA approval and I realized that the oldest drug they wanted to give Kelsey had come out in the early 1970’s…
ON-SCREEN TITLE CARD:
DOXORUBICIN CHEMOTHERAPY: Approved: December 23, 1987
STEVE HILL VO:
… the newest drug they wanted to give Kelsey came out around 1988…
ON-SCREEN TITLE CARD:
ETOPOSIDE CHEMOTHERAPY: Approved: November 10, 1983
STEVE HILL VO:
… and I realized, this isn’t the cutting edge of technology, they’re giving us the same old stuff …
ON-SCREEN TITLE CARD:
CISPLATIN CHEMOTHERAPY: Approved: December 19, 1978
STEVE HILL VO + on camera:
… I just thought, well, this is ridiculous. It felt to me like they were grasping at straws. I was doing all that research and Sarah and Susan found the Burzynski Clinic. Sarah said “I want to take her there.” I looked at it like, well, if she’s only got approximately 9 months to live, and we come over here and we don’t have all the side-effects… well, in 9 month’s time, which am I going to be better off doing?
SARAH HILL – on camera interview:
Right.
STEVE HILL VO + on camera:
If the ending results is the same?
NARRATOR:
Upon the removal of Kelsey’s left kidney and left adrenal gland, her diagnosis was confirmed at the University of Texas Medical Branch, and again at M.D. Anderson cancer center. Where, a month later, M.D. Anderson also confirmed that Kelsey’s cancer had spread to her lungs. After desperately researching Kelsey’s situation, her family decided to decline all chemotherapy treatments offered my M.D. Anderson, and instead, enroll Kelsey into one of Dr. Burzynski’s clinical trials. By this time, Kelsey’s cancer had also spread into her liver.
After starting her Antineoplaston treatment, the tumor in Kelsey’s liver was gone by August of 2007. CT scans of her chest revealed six tumors in her lungs at the start of treatment. One-by-one, the tumors in Kelsey’s lungs began to go away, leaving one small spot four years later which was deemed to be inactive and most likely scar tissue. Today, Kelsey Hill is considered to have had a complete response to her Antineoplaston treatment.
Continue To Chapter 5 (28:48-34:57)