The diffuse pontine glioma is a recurring character in this web series, a serial killer whose name and M.O. we know, but who we just can’t get the jump on. In this case, again, Leslie’s first symptoms were a droopy eye and stumbling. According to her CaringBridge story (truly a wonderful resource for families undergoing treatment), Leslie began radiation and chemotherapy (Temodar) on the 28th of March.
Leslie’s family seems surprised by how quickly her condition seems to deteriorate. They are eager to start treatment ASAP, and they are already shopping around for other treatments. Leslie’s mother, Mary, seems a little suspicious of doctors who are opting for an aggressive treatment that discounts long-term effects, a sort of fatalism the family seems not ready to accept: We know that the doctors think she will not be with us long and we are concerned that they may be “discounting” any long-term effects of the treatment. Although we have full confidence in her doctors, we would appreciate if anyone out there can give us any direction on this.
The next entry in the journal comes from mid April, when Leslie is having surgery to sew shut her eye. There seems to be some damage to a badly healing scratched cornea. She wears an eye patch.
Mike & Mary have been in contact with other families over the past few days that have kids with the same illness to determine what treatment & therapy choices they are making. We are looking into significant diet changes as well as some other alternative medicine options. We are also continuing to seek out clinical trials, but finding there are few choices, plus you have to meet eligibility requirements. These can range from having no treatment at all (which leslie wouldn’t qualify) or currently having a recurring problem. At this time, we feel that we should be “pro-active” and do something while the tumor is at least stabilized. As I read this I suspect that the family is actually getting desperate. While it’s important, I’m sure, that a child is properly nourished during this treatment, I see so many people fighting this disease and turning to alternative medicine and then futzing with diet obsessively. Perhaps it gives a feeling of control, of doing something rather than sitting by. Through April as the course of radiation nears an end, Leslie’s port seems to not be properly installed, not in a dangerous way, but in a way that might leave her open to yet another procedure, and she is getting weary of doctors.
As the family celebrates Leslie’s last day of radiation on 9 May and her weaning off of the steroids, her mother Mary starts contemplating alternative treatments. She suspects that cancer thrives in acidic bodies, an alt med belief that seems common but seems implausible to me since all stomachs aren’t filled with cancer. If treating cancer were only so simple, we’d have discovered that long ago and there would be much higher survival rates.
In early May, Leslie’s back in the hospital for an infection, and then again at the end of May, when Leslie is suddenly taken ill: While attending Camp Smile A Mile Family Camp, Leslie had to be taken by ambulance to the hospital on Saturday night. She was not feeling well initially and did not want to participate in any of the camp activities. Her Mom and Dad did not push her and gave her the option to go home but she really wanted to stay. They noticed that her legs were bothering her when she walked and that she began to have shortness of breath. As a result, they had her ambulanced to the hospital in Alexander City, AL. That hospital would not touch her due to the brain tumor so she was then ambulanced to Children’s Hospital in B’ham and did not arrive there until 4:00 am Sunday morning. Her oxygen level and heart rate were tested right away and her oxygen level was extremely low (in the low 80’s-which requires one to have oxygen given). Her heart rate was high and they think this was because of a fever. Her blood work showed no signs of infection which is why she was in the hospital last week. However, it did show that she was very anemic, so they are now giving her blood in hopes to correct that problem.
Leslie remains on intermittent oxygen into the next month, it seems. Her mother is excited when an MRI shows the effects the radiation had on the tumor, shrinking it as expected. Soon Mary is talking about colon detoxification and Ph and nutritionists, not a good sign as far as evidence based medicine is concerned. Nonetheless, it seems that the parents are sort of forced to sail in uncharted waters here, as there are not any studies to give guidance about maintenance doses of their current chemo in children. But then we see this: We are also still considering the Burzynski clinic in Houston if Leslie’s case is accepted, as the FDA has placed restrictions on who they can treat and who they can’t (based on the success rate of the “proven” therapies such as radiation/chemo) since they are in process of FDA approval for their treatment. As many of you know, the out-of-pocket expense for this would be substatial. If this ends up being the chosen route, you will probably see some things on the site about fund-raising! And this: ….but we also have her on Ruta 6 & CalPhos which is a homeopathic remedy and has shown success in brain tumor patients through a study done by a Dr. Banjeri in India in conjunction with someone at MD Anderson.
This is in all likelihood the Prasanta Banjeri, who treated–in the most horrifying story I’ve yet encountered–Chase S., a kid who had the same tumor as Leslie. They also start “visualization” exercises at the recommendation of their nutritionist. On the positive side, however, Leslie is well enough to take up karate classes again, which is good to hear. It seems that at some point in July the family got word that Burzynski would treat Leslie and they visited his office on July 26th, a few weeks after her 7th birthday: Here is a quick update on Mary and Mike’s visit to The Burzynski Clinic www.cancer.med in Houston today. They both feel very strong and hopeful about it and want to get Leslie there ASAP. It is very expensive and the cost up front will be around $30,000 and they will have 3 weeks after arriving to pay that fee. Then, in all, the treatment will cost up to $110,000 ($7000 a mth.)….if insurance does not cover it….which they do not expect it will. Leslie will have to have another MRI done in B’ham before her treatment starts at The Burzynski Clinic. She will need to be at the clinic 7 days after the MRI scan has been done. She will be at the clinic for 3 weeks and then go home with a pump (a little bigger than a cell phone) in a back pack and have to wear it most all of the time. It will be administered through her port. She will be able to take it off for 2 hrs a day (eg. for Karate class). This treatment will be done for about a year. I’m guessing nobody at the Clinic mentioned that Burzynski was convicted of insurance fraud (and the conviction was upheld). I can’t imagine that insurance companies would like doing business with him or trust him. But he apparently exudes trust and concern: Mike and I both feel that this therapy will not hurt her since it is non-toxic and we would always wonder “what if” if we do not try it. We did not feel like we were being fed a “sales pitch” of any kind while we were at the clinic. They simply explained their treatment and let their cases speak for themselves. I almost expected Dr. B. to be sort-of an “untouchable” type of Dr., but found him to be very caring and down to earth, as the rest of the staff. Since I have designed medical buildings for over 20 years, I sort-of expected his office to be “state of the art” with a lot of “show”. We did not find that either. Although this may be a knock to my profession, I felt comfort in that they are not out spending a bunch of money trying to make things look fancy. Rather, their concern is treating patients to the best of their ability. Dr. B. is now also doing gene therapy which is a highly targeted cancer treatment to the specific genes involved. If antineoplaston treatment does not work for whatever reason, he indicated that gene therapy might be another option for Leslie. With gene therapy, they have seen cancer disappear very quicly. However, he wants to start her on antineoplastons first since he and his staff are much more experienced in this treatment. At this time, we are planning on starting Leslie on August 14th. One of us will be in Houston with her for 3 weeks to learn about administering the treatment at home and so they can get her regulated to the correct doseage. For the next 2 weeks (before we leave), we are getting the house ready to sell and will hopefully have it ready to show by the time we leave.
There are so many warning signs in this statement. First, never once in my experience has a doctor ever cracked open a dossier of patient success stories for me. Hell, that’s so scummy not even drug sales reps do that! Parading success stories is the definition of a sales pitch. Secondly, the claim that ANP are non-toxic is ludicrous and unsupportable–you only need to look at the trips to the ER by the other patients on this site–and one can only wonder what weird definition of “informed consent” operates at the Burzynski Clinic. Lastly, Burzynski has that other miracle cure, his absurd “personalized gene-targeting therapy.” He sets the hook in deep and yanks hard, he does. Leslie begins antineoplastons in mid-August. Oh, when they start ANP, it seems that there is a fluid-filled cyst. I don’t know what it is at this point, but it seems to happen a lot at Burzynski’s Clinic and it seems to never be a harbinger of success. Now, it’s on the tumor not in the tumor. Perhaps it is a remnant of radiation? Don’t know: Dr. Burzynski noted a fluid filled cyst on the tumor that they will be watching closely throughout treatment. As the treatment starts working, additional fluid is common due to the tumor dying off and creating necrosis (dead tissue). This additional fluid has to go somewhere and it may gather in that cyst causing it to grow in size causing neurological symptoms. At some point, it may become necessary to aspirate the cyst. I don’t know for sure and did not ask today, but I believe this is an outpatient procedure. I have heard of this in numerous other DPG children, so I believe this is a common problem with this tumor although any procedure in this area of the brain stem is cause for concern. To reduce problems in this regard and to reduce swelling during treatment, they will be prescribing Decadron (steriods). Although we do not like this idea, it doesn’t appear that we can avoid it as natural anti-inflammatories may not be strong enough. As many of you know, we have been on a pretty strict diet since May. We are meeting with the Burzynski nutritionist tomorrow (I believe) to review their dietary recommendations to see how our diet may need to be adjusted for optimal results with their treatment. We understand that salt will be an absolute no-no, as increased sodium levels are a common side-effect of treatment.
When Leslie has headaches and dizziness following the start of ANP, we get a sort of animistic folk-explanation for what is happening to her: Leslie did wake up with headaches and felt dizzy on Thursday. This is to be expected since the medication is going up and “attacking” the tumor. The body’s natural response to this is swelling. Therefor, they slightly increased her decadron to combat this reaction and she has been fine since. During the week of August 25, they report that they have bought Leslie a true cowgirl outfit, which is truly adorable:
Notice the advertisement on that wall. (Grumble.) This is Ms Carla, one of the people taking care of Leslie. She takes Leslie to a Joel Osteen’s megachurch:
We attended Lakewood Church on Sunday with Ms. Carla from clinic.Although we were seated in the upper level, Carla spoke with an Usher who kindly escorted us down to the floor when it was time for prayer. They took us directly to Dodie Osteen’s line (Joel’s mother). Dodie laid hands on Leslie and commanded that the tumor “come-out”.
At least this treatment didn’t have any side effects.
I’m going to go ahead and post the entire report prepared by Vestavia Imaging. I don’t know what some of this means, but I do know that it is good!!!
“Again demonstrated in is a large infiltrating mass involving the right side of the pons and right middle cerebellar penduncle. There is a fairly large exophytic component to the lesion extending inferiorly into the subarachnoid space lateral to the right foraman of Luschka. The medulla is also involved in this infiltrating process. The fourth ventricle is displatced to the left. There is, however, no definite indication of hydrocephalus. The supratentorial structures have a normal appearance. Following administration of intravenous contrast material, irregular contrast enhancement is noted. The appearance of the lesion on post-contrast images suggest an aggressive tumor histology.
“Comparison is made to study dated 8/9/06. In the interval side since the preceding study, the previously noted central necrotic portion of the tumor now has a more solid irregularly enhancing appearance. The overall anterior-posterior dimension of the lesion in the axis parallel to the right middle cerebellar penduncle appears decreased. This could be secondary to aspiration of the patient’s cystic or necrotic central component of the tumor. Correlation with surgical history is suggested. Careful search is made for evidence of drop metastases. There is no indication of seeding of the subarachnoid space at this time.
“Impression: The pattern of contrast enhancement has become more irregular and the central necrotic or cycsic portion of the tumor has decreased in size. Has there been interval aspiration of the cystic or necrotic portion of the tumor?“
Ok, so there we have it. This Radiologist has no idea what type of treatment we have been doing, but he is asking if the tumor has been aspirated. So all of you understand, there have been NO aspirations on this tumor, at all…ever. Dr. Barbara (from Burzynski) called yesterday and said it was a good report, but she did not have the scans. Scans were overnighted to them yesterday and we should have their reading sometime today or tomorrow morning.
On Oct. 30, we get some bad news, and it really does seem by now that the cyst is not a good sign.
Hello, I just wanted to update on this weekend. We had a weekend filled with activities scheduled and very tired on top of it which did not help matters. While shopping on Saturday afternoon, I noticed Leslie was not walking as well and had less engergy. She rested the rest of the day and seemed to be ok on Sunday morning. However, she started the same symptoms on Sunday around noon and her speech started becoming slurred as well. We had started to taper her decadron down and it might be that we simply tapered too much. After speaking with the Dr.’s in Houston, we started her on IV decadron to get her feeling better. She is better today although still lethargic with some signs of symptoms. Today, the doctors prescribed a higher pill dose of decadron and we will decrease over the next few days to determine where she needs to be. I have her at home resting today.
The symptoms could also be a sign of necrosis (dead tissue created from the treatments) taking up more space in the brain. We should know more after tomorrow’s MRI although we will not have Burzynki’s reading right away since a CD has to be overnighted to them.
Please keep Leslie in your prayers as she goes through this phase. We have always expected there will be many ups-and-downs through this although it is still difficult when the downs occur.
I mean, I’m just a putz on a PC with no medical training. But this necrosis thing, the tumor dying at the middle, seems to presage bad things always. As Dr. Gorski has explained, the pattern of a tumor dying in the center is more likely to be a result of a tumor outgrowing the blood supply. Otherwise, one would expect the thing to open lots of holes, like a vile swiss cheese, or shrink from the outside in. Are we seeing this pattern AGAIN? Why the hell is there nobody at the Clinic who seems able to deliver this news?! Maybe if we post enough of these, someone with authority will notice.
The tumor has grown, it seems, and the doctors in Alabama are going to put in a shunt to try and relieve some of the pressure. They talk to Burzynski:
On that note, we did speak with Dr. Burzynski today regarding the latest scans. We had been told before that the tumor was larger, which obviously had us concerned. However, Dr. B. says we need to consider the “net” tumor size. The “net” tumor size is actually smaller. It is only larger because there is a lot of dead tissue around it and inside of it. This obviously causes the diameter to increase which is how it is being measured. This means that the medication appears to be doing it’s job because it has turned active tissue into dead tissue. He noted that some of the dead tissue could also be from radiated tumor that is taking time to “die off”. However, the dead tissue can also cause a host of problems of it’s own. The bottom line is that a lot of inflammation and irritation is occuring (which is fairly typical from what I can tell). What we must now pray for is for Leslie’s body to work in the most optimal way to rid itself of the dead tissue so that the inflammation and irritation will cease. As the body does this, Dr. B. says we hope to see the tumor collapsing on itself, creating a much smaller image on the next MRI. He described it like a blister on your skin. Over time, the body carries that liquid dead stuff away, then the skin collapses down eliminating the “mass” of the blister. This is sort-of like the same thing in Leslie’s head. The problem is, there is only so much room in a person’s head for this inflammation and swelling. This is why we must pray for her body to eliminate the dead tissue in the most efficient manner possible.
The disease seems to be progressing but the family seems to interpret this as “getting better”, but the doctors in Birmingham seem to be willing to try to remove at least some of the tumor. Maybe that’s why they are hopeful:
We returned home on Thursday afternoon and Leslie has been getting better each day. She gained some additional weight due to the increased steroid dose, so we believe her mobility is still not as good simply because of the added weight. Her eye movement is still not normal and the right eye is starting to turn inward. This is most likely an effect from the tumor rather than the hydrocephalus.
At the end of November, we hear:
By Sunday night, her balance had declined significantly requiring her to be “cradled” to walk. In addition, she had almost no appetite and increased apathy. These are obviously very disturbing developments. We stopped the eye therapy on Sunday night to determine what was caused by decreased vision vs. tumor/swelling. On Monday morning, Burzynski prescribed an increased dose of decadron steroid, as it was most likely swelling. After 24 hours and no significant improvement, Burzynski told us to have a CT scan done and contact the neurosurgeon (Dr. Wellons) since this could be related to her ETV procedure clogging up.
By December 18, Leslie has had some more problems. I’m not seeing anything in here that looks like improvement, just a long decline.
I don’t have much “official” news, but it’s been a while since the last update so I want to let you know what’s going on. Late last week, Leslie’s balance and speech seemed to start declining more. The doctors increased her decadron again (we can’t seem to get it tapered off) and we have seen some improvement although the increased symptoms are still a big concern. Today, we decided with the doctors to have another MRI. This way, Burzynski will have a chance to read it before closing for the holidays. Plus, we will know where we stand and the doctors can to respond to the symptoms more accurately rather than “guessing” over the 2 – 3 things that could be happnening. We had the brain MRI this afternoon and will return in the morning for a complete spine MRI. I am overnighting the Brain MRI’s to Burzynski today and will drop off a CD to Dr. Wellons tomorrow. We are hoping this will all keep us out of the Children’s ER for hours on end over Christmas. Please pray that we can avoid this and enjoy a nice break over Christmas. We all really just need some quiet time. We realize that it won’t be easy either way, but being home is always better than being in the hospital.
The family had a relatively uneventful Christmas, which is a deserved relief, but at the beginning of the year, we learn the tumor is STILL growing. Unfortunately, the last MRI showed growth which I guess explains Leslie’s increase in symtoms. We have also been diligent about trying to get her off of steroids which is a factor as well. Based on our latest attempt, it appears that she will have to stay on some amount of steroids for the long-haul. Although Burzynski clinic says the ANP therapy is our best bet against this tumor, we have ordered an additional blood test that has been sent to California to determine if Leslie might be eligible for their (Burzynski’s) latest gene therapy treatment. Well, if the first insanely expensive not-a-treatment doesn’t work, try another insanely expensive treatment. That’s how they do it at the Burzynski Clinic, at least. By January 9th, Leslie’s having a tough go, swallowing and speech are difficult, and she is suffering from paralysis on her left side. By the 30th, we hear this, despite no good evidence that this poor girl is responding: Leslie has been back on Burzynski’s antineoplaston (ANP) treatment for over a week now. The doctors in Houston are still hopeful that the increased tumor mass is actually more swelling and necrosis (dead tissue) rather than active tumor. The thought is that if we can get a handle on these things, then the mass will show decrease at some point. Obviously this is no small task, as swelling and necrosis are very serious issues.
This is merely cruel. But it’s another $7,500 in Burzynski’s pocket, I suppose. In early February, Leslie is in the hospital with pneumonia. She was back home by the 15th, but still in the thrall of Burzynski: She only had the November scan to compare, but we had another scan done in December which showed a 32% increase from the November scan. This being the case, we were pleased with the news on the MRI although symptoms seem to have increased which is a concern. We have overnighted a copy of the scans to Houston and should be speaking with Dr. Burzynski on the results tomorrow afternoon (fri.). to determine the best course of treatment from here.
Leslie never rebounded. Her parents made the courageous decision to contact hospice and Leslie passed away peacefully early on February 20th. These stories of desperate parents working very, very hard for their children are depressing. I’m learning a lot about suffering through their stories. At no point in this narrative did I see anything that looked like meaningful improvement. I wasn’t there. But this line about how the cancer’s dying and THAT’S why your child is getting worse is such an evil one. It’s the same thing that I keep seeing over and over. We must find a way to put an end to this and get the attention of people in authority that this cannot continue. I do hope that former patients will see that there is a horrific pattern here and realize that they have every right to complain about the treatment they received. They will be helping future children by taking action. For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating toSt. Jude’s Children’s Research Hospital, who unlike Burzynski, charges nothing to treat sick children.