Samantha’s brain tumor is apparently a very hard one to treat. Removal and radiotherapy are the most common treatments. Nonetheless, her parents got her superb care, the best any parent could. She spent several weeks at a local hospital in Florida before transferring her to St. Jude Children’s Research Hospital, one of the premier cancer hospitals in the world, where she received radiotherapy and chemotherapy. The chemotherapy was hard on her and they quit it early, but during her 6 and 1/2 weeks in Memphis she did extremely well by all accounts. Her last day of radiation therapy was on 30 March 2006. They were back home to Vero Beach by the middle of April. She was having occasional seizures, which took their toll, but she returned to school and by the end of May, she is playing and running and according to her family:
“She has been a little shaky but hopefully it is just her body adjusting and will soon correct itself. She will have her labs done again tomorrow. Her counts were all coming down (which means the chemo is doing what it is supposed to do).” (May 29, 2006)
In June, Samantha returned to St. Jude, where she had a tough time (she was having seizures, which are apparently common with this type of tumor) and they planned the next course of chemotherapy. The tumor seemed not to be growing at this time. The parents made use of a medical trip to Orlando to take the kids to Sea World (July 22, 2006).
In August, we see that the family has decided to go to the Burzynski Clinic in Houston. I haven’t seen any clear foreshadowing of this decision, but we learn mid-month that the family has an appointment at the Clinic on the 28th. Audra, Samantha’s mom, is rather far along in a pregnancy, so they decide to take an RV, just in case. They go through the ritual that we have seen time and time again. Stay for a couple of weeks, learn how to change the bags, and administer the chemotherapy (antineoplastons are by any reasonable definition chemotherapy):
Samantha had her evaluation today at the Burzynski clinic. It was a long day for all of us but she did real well. We did a lot of talking with doctors and nurses, she had a physical and labs done. Her labs came back good enough to start treatment we are just waiting on the approval of the FDA (which is standard) and her MRI and she will be able to get going on it. We are hoping for a start date of thursday. From what we were told today she will be spending about 2 hours a day M-F in the clinic and about 45 minutes on Saturday and Sunday. These visits will consist of Kurt and I being taught how to access and flush her port how to change her medication bag (which she will carry in a back pack) and drawing labs. They will start out with a low dose of medication and work up depending on how she tolerates it. They will moniter her white counts and platelets 2 times per week and her potassium and sodium levels every 2 days. So far that is all we have been told. Looks like we will not have to be in the clinic at all tomorrow so we will try to find something fun to do for a while to keep her busy. We will update again when we get started. Pray that this is the answer for Samantha to have quality back in her life and ultimately be cured of this disease. Thank you for your continued love and support.
They plan to spend about 3 weeks in Houston. On her 11th day of treatment, we hear:
Samantha is on day 11 of her new treatment and is doing pretty well today. She had a rough few days with vomiting and being very unsteady on her feet. She had a drop in her potassium because of all the vomiting and had to start a supplement. She also had her steroid increased which seems to be helping as well. The doctors are hopeful that if they see improvement with the increase in steroids it could be an indication that she has some intercranial pressure which would be from the tumor responding to the medicine. We are sharing that hope with all we have and are working once again to get her stronger and rebuild her appetite. She did a little better today than yesterday and with any luck tomorrow she will show some more improvement.
As far as I can tell, ANYTHING can be taken as a sign that the medicine is working at the Burzynski Clinic, including getting worse. Scroll through the other stories and you will see that there is almost always a “good response” at the beginning. I wonder if this is not some sort of “setting the hook” technique, as it were. So many people say the same thing, and imagining what these poor families are going through makes me wonder if this is almost invariably the only good news they’ve had in a long time. Of course, the improvement might just be because of the steroids and have nothing to do with the ANP.
Oh, and while they are in Houston, their mother has a baby boy. The family is flown home on the 26th of September by an anonymous donor on a private jet. On October 3rd, we see she is suffering the normal side effects of ANP, especially the unquenchable thirst:
We are all settling in at home once again. Samantha has started back with her home-bound teacher and is back to learning. She is still having trouble with seizures which really limits what she can and can not do. She seems to be tolerating the meds okay but is excessively thirsty and hungry from the steroids. We are hoping to start decreasing those soon as they are also disrupting her sleep which may be adding to the seizures. It seems to be a cycle we can not get away from. She has her next MRI scheduled for October 20th. Hoping and praying real hard that we see some positive signs from this new treatment although we were told it may be to early to see anything real significant but it is possible.
On the evening of the 14th, Samantha is onstage at a benefit concert for children with astrocytoma and has enough energy to be able to enjoy the evening out. On the 24th, however, we learn that the family had a big scare not long afterward, when the pressure on her brain made her nauseated. She was taken to the hospital, but trying to relieve the pressure using a shunt did not help. It took two surgeries to position the shunt correctly. On the 28th of October, the family shares the results of their most recent MRI from the Burzynski Clinic:
We received Samantha’s MRI results from Houston this week and they are saying that they consider them to be stable. She has had 10% growth in one area but has had “significant decrease in the intensity of enhancement” (which means less active Cells). We will be repeating her MRI in about 4 weeks as we work to get her to her maximum dose of antineoplastons. They are increasing her dose more rapidly and hope to see a decrease again in enhancement but in size as well.
Samantha is still recovering from last weeks surgeries but seems to be getting a little better everyday. She is so strong she amazes us so much.
Unfortunately, Samantha was back in the hospital following intense seizures in mid-November. It seems that they were working on changing seizure medications at the time. (Nov. 18)
On December 3, we hear this, which is a little out of context:
We have received the official report from Dr. B. He seems to think that what they are seeing could possibly be radaition necrosis (dead cells). He has ordered a PET scan which determines what cells are actually active. We are trying to get that done sometime this week. Apparently the effects of radiation can be seen months, even years later.
But then the parents say something that just…fills my heart with despair:
We have put our faith in Dr. Burzynski and are praying that he is right. […] Please continue to pray for Samantha and the knowledge of Dr. Burzynski and all that are treating her.
They are hoping he is right, so, he seems to be holding out the hope for some good news. (There is not enough information to tell if he has fed the family the “tumor is breaking up now, and that’s why it’s dying on the inside” line, something that family after family on this site has heard, but which is more likely to mean that the tumor is growing larger and has outgrown its blood supply.) But this foreshadowing of a possible positive outcome seems incongruent with something that the family says only a week later, after another scan:
December 10, 2006As we suspected Samantha’s PET results showed significant tumor progression. She has officially been taken off antineoplastons as of today. We have started her on some additional supplements and at the suggestion of Dr. Burzynski will be doing some additional labs to see if she has any abnormalities with her gene expression. If these labs come back with any elevations they have another step as far as therapy for her.
Seems like Burzynski is setting them up for his “gene-targeted therapy” treatment which David Gorski has thoroughly dismantled. This treatment is another $30,000 to start off with. And it doesn’t matter which of the hundreds of types of cancer that patients bring to the Clinic. This is seems like it is always the next very, very expensive step.
Around Christmas, Samantha undergoes a severe decline. She is in the care of hospice:
December 29, 2006We apologize for the delay in updating. Samantha has had a significant decline since our last update and is now under the care of hospice. She continues to fight and amaze us with her strength.
Last thursday she really had a terrible day. She was having continuous seizures, elevated heart rate and trouble breathing. She had also been spiking fevers and was unable to walk, talk, and was having difficulty swallowing. With the help of her VNA nurse and pediatrician (who we will be forever grateful to) we tried our best to get her comfortable but nothing we did seemed to work for her. Eventually we asked to have hospice come in and within a few hours they had a doctor and a team of people here to try and help the situation. After a few hours things were under control and Samantha was calm. It was a horrible experience and we hope never to go down that road again. Samantha has come around some and is doing a little bit better. Please continue to pray for her strength to keep fighting as we are looking into yet another treatment for her.
The accounts for January are pretty difficult to read, honestly. The parents are weighing a number of conventional therapies against alternative therapies, and whoever suggested that Samantha should be treated with homeopathy to “boost her immunity and detox her system” as a part of end-stage cancer treatment deserves to be flayed.
Samatha B. passed away on February 19th, 2007.
Later that same year, the family established a Memorial Fund, which has helped at least a dozen families who have incurred large medical expenses. These are significant contributions and a wonderful gesture and legacy for Samantha. You can read Samantha’s story in its entirety at the website. For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude’s Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us.