On Friday July 31, 2010, Kiwi L.’s left hand had been spasming all day. The family went to the ER, was admitted, and after surgery at the beginning of August, she received a diagnosis of supratentorial primitive neuroectodermal tumor.
The family was devoted to alternative medicine, though I think that this would be “integrative” since they were working with physicians. The journey to the clinic was documented on the family website:
We became flooded with information. Most of it making us feel even more helpless. I also began to do some emotional work with myself and Kiwi, hoping that we could clear some of this which had manifested in our lives. We started working diligently with our homeopath and also with a system called Neuro Modulation Technique (NMT). We found ourselves a good holistic MD who added some great supportive supplements to our already existing regimen. […]
Kiwi’s first MRI in September was clean, it was about 7 weeks post op and there were no signs of re-growth, her spinal fluid was also clear of any cancer cells. This was really hopeful for us. After tons of research and being overwhelmed with information, we decided to pursue the Burzynski Clinic as an option for Kiwi’s treatment. […]
Well during this time of going from one person to the next, each getting us a little bit closer to Burzynski, Kiwi had another post op scan that was about 6 weeks after the first, about 13 weeks after her surgery, the beginning of November. To our surprise this scan showed that Kiwi’s tumor had returned and she also had about four smaller ones on the top of her brain covering.
Kiwi had another resection on Nov 10th. At the end of the month, according her blog, the family was frantically trying to get her to Texas. According to her grandmother, the family had obtained a compassionate exception through a senator in their state to receive Burzynski’s chemotherapy, antineoplastons. She was in the hospital at the beginning of December because of issues with her shunt, but was back home on the 5th of December.
On December 7th, the family was on its way to Houston to the Burzynski Clinic. They took the photo in front of the Clinic that that so many other people have:
On or around the 10th, Kiwi has started treatment. This involves an around the clock infusion on antineoplastons through a port in her chest.
While in Texas we had to be at clinic everyday at 9am. The treatment was very involved, we made her IV bags everyday which took about a half an hour to an hour, she was connected to the pump basically 24 hours a day. She would get an infusion every 4 hours and it would last almost 2 hours on average depending on her dosage. The antineoplastons were bonded with sodium so it made Kiwi extremely thirsty. Kiwi starting treatment was very surreal. She began to have a difficult time with a few things.
By the 15th, she has a fever:
On Monday at the clinic we saw the doctor which decided that since the cultures were negative at this point she wanted to have us talk to Kiwi’s neurosurgeon to see if we should go to Texas Children’s Hospital Emergency room to make sure her incision wasn’t infected. Well the neurosurgeon said yes, so Monday around 5pm Will, Kiwi and I headed to one of the biggest children’s hospital in the country.
She’s in the hospital (and off the treatment) for a few days, but they never find what caused her sickness despite a battery of tests, including an LP. Unfortunately, when she gets out and back on ANP, she has a seizure, and goes right back into the hospital. They are still in Texas over Christmas, and they report on the 23rd:
Kiwi re-started treatment again on Monday and things are going good. She had a little bit of a rough start and had to be put on a small dose of steroids but she is tolerating the treatment now. Hopefully the steroids won’t have to last for too long, it is just what we need to do now to be able to keep her on treatment. She has started drinking and peeing a lot which is really good. I have never seen her drink so much water
This unquenchable thirst is a side effect of the ANP and it’s high sodium dose. I’ve never seen anyone claim that the sodium was related to any supposed therapeutic effect. Constantly getting up to go to the bathroom, while it sounds like a minor side effect, suggests that it leads to a degradation in the quality of life for both the patient and caregivers.
The antineoplastons also made her pretty sleepy, along with constant copious amounts of pee. It was crazy how much input and output she had. It was a lot of work and a lot of adjusting for all of us. Kiwi had a difficult time getting used to being connected to the IV bags, and then that quickly shifted to her insisting on being connected. But she definitely was in the best of moods when she was free to roam without her pack once a day for an hour or so. We ended up being in Texas for about 4 weeks.
She pulls her ANP around in a Dora the Explorer roller bag.
On the 30th, we see that the family is on the verge of coming home, but there have been problems. Kiwi is on steroids because of pressure in her head:
We are headed home this Saturday, things aren’t perfect, but this is the next step. They seem to have become comfortable enough with administering the meds, the pump, the strict sterile environment necessary to avoid any central line infections, and the responsibility that comes along with all of the treatment protocol. Kiwi’s little system has taken a beating due to the antibiotic therapy in combination with the effects of the high intake of sodium based fluids, then the volume of output. All of this has created the perfect environment for thrush, and the vomiting has resulted in low potassium levels and managing the delicate balance of sodium has been tricky.
Like I said, this is a real side effect that can be shocking. To get a sense what happens to a kid who has this ANP thirst, watch the video about Luna P’s story (Luna took an almost identical photo in front of the Clinic.) Then we hear that goddamned line that every damned patient and parent seems to report, and is the prime reason that so many people have decided that 35 years is more than enough:
They have now begun to administer her steroids by IV, these are important in controlling the intracranial pressure which can result from the tumor tissue breaking down, which is ultimately a good thing. And fortunately the antibiotics have come to an end.
Getting worse is getting better. Increased pressure is improvement. Black is white, and up is down. It’s hard to read this week after godawful week, and I don’t plan this. This is what patients themselves report consistently. See the cases of Evan W, Justin B, Georgia M, Cody G, Leslie S, Domenica P., Chase S, and Andrea W. Think of Amelia S. Again, I think of the nurse told John D.:
“[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”
Further, the steroids have depressed her immune system to the point that she has thrush, a fungal infection.
They are home in the first week of January, and the family is trying to plan how they will raise the anticipated $7,500 the Clinic has promised to charge them. She is swelling from the steroids. She has an MRI on the 26th. Between the 14th and the MRI, however, she is in the hospital twice for low red cell counts. Then the MRI:
After arriving to the ER they decided to keep her do an CT scan and take cultures of the site and her blood. The scan looked good, which is encouraging for more than one reason. Ct scans are not as detailed as the MRI, but as far as the first look and what we have been told there hasn’t been huge tumor regrowth, we are so excited, the treatment seems to be working!!!
This optimism is what snags people in Burzynski’s care. It is a relentless optimism. By the 29th, things have changed dramatically:
Most of you know, after Kiwi’s second resection surgery, we worked very hard to get her into an FDA Clinical Trial at the Burzynski Clinic in TX. That part of our story is in earlier Blog posts. We spent a month there, Christmas included, in training and starting her treatment. We continued the demanding treatment protocol at home and were extremely hopeful based on the history of antineoplastons, that this treatment offered incredible possibilities, and little if any side effects, and it was non-toxic. […]
If any? I have to disagree based on what I have seen here. The steroids and ANP seem to have made things very difficult.
However, the MRI that they moved up to Tuesday evening didn’t bring with it any good news.Kiwi’s tumor growth has continued, and at a rate which suggests that the TX Clinical Trial treatment either isn’t working specifically for her, or the aggressive nature of this tumor has created a situation in which the antineoplastons simply aren’t working fast enough.
The rationalization that somehow ANP must work (just not fast enough or only in other people) is…it’s the voice of someone who really believed.
6 months after the diagnosis, the family pulls Kiwi from ANP and begins with chemotherapy, which the family had originally resisted. The tumors actually respond to conventional chemotherapy, but they came back. Kiwi L. died on Nov 17th, 2011.