On 8/15/2011, Evan’s mother brought her 7-month old son to the ER because his right eye was wandering. The doctors found a 3cm tumor, a pineoblastoma. It is an exceedingly rare disease.
On Aug 27, Evan’s family received the biopsy results. At this point his mother is is already evincing interest in Burzynski. They look for input:
In the meantime, I’m researching a Dr. Stanislaw Burzynski and his cancer treatment with Antineoplastons. If anyone has heard of or had experience with this doctor, we welcome your input.
Following a consult on Aug 31 about the best course of action, the physicians float a couple of clinical trials, either CCG-99703 and one run from St. Jude, SJYC07. They don’t have lots of results, which does not give the family a lot of comfort:
Both of these options are considered the best, both have shown the best results in treating PNET babies….just not PNET babies with pineoblastoma. Our last and most controversial option is The Burzynski Clinic in Houston, TX. They have a FDA Clincal Trial open for Antineoplastons. Dr. Burzynski informed us he has only treated one pineoblastoma baby and she is now 15 years old. His one patient is one more than conventional medicine has to offer. If we go with what our doctors recommend, it seems we will only be making Evan very ill for the rest of his short life. If we go with what our doctors call a “charlatan”, Evan will not suffer from treatment. I think we might have to go with Burzynski. There just isn’t enough time to research more. The doctors told us Evan has a matter of weeks to a couple of months if he goes untreated. Tonight we decide.
It’s unfortunate that the family feels rushed. The survivor they are talking about is Sophia G., a member of the Burzynski Patient Group. She also had conventional therapy, and though she is still a live more than a decade later, without a large trial to weed out the background noise, who knows why she recovered? While they are emotionally compelling, testimonials simply CAN’T be considered evidence of efficacy.
When they reach Houston, a miscommunication left them without an appointment, but Sophia’s family pulls some strings and gets them into the Clinic on Tuesday, Sept 6.
According to the Sept 16th entry, we learn that Evan begins treatment the following day, the 17th. The mother concludes the entry with:
I believe we are in good hands at the Burzynski Clinic, I know they won’t let me leave until I am comfortable and capable of doing Evan’s treatment regimen.
On the 19th, we hear that Evan is in the ER and it’s completely horrifying for the family.
Friday was great; Evan started treatment at the Burzynski Clinic which we were very excited about. Saturday I was a little concerned about Evan’s hydrocephalus but was told it was minimal and not to worry about it. Sunday morning it was a little worse, by that night it was a lot worse. I could not wake him up and we ended up rushing him to the ER. The doctors at the ER had to unhook his pump (pump is administering Burzynski’s antineoplastons) so that they could inject steroids into his central line (catheter in his chest). I was worried about unhooking the pump without the Burzynski on-call doctor’s permission because I thought it could bump him from the FDA Clinical Trial. I expressed my concern to the pediatric ER doctor. I explained that if he was bumped from the trial he would die. She told me that if they didn’t give him the steroids he would die from his hydrocephalus. They had already poked him unsuccessfully numerous times, including his neck. The catheter in his chest seemed like the only immediate option. Needless to say, I called the on-call doctor and got his permission but I felt sick doing it. The on-call doctor did not make me feel confident that Evan would be allowed to continue his treatment, he seemed so unsure but I didn’t really have a choice.
Eventually, after seizures, receiving breathing assistance, and being transferred to Houston Children’s Hospital, Evan stabilizes and improves enough to go home, albeit with a gastric tube in his nose (the mother says that he has had a hard time feeding and taking in liquid since his surgery).
Evan has develops anemia and goes in supplements, we hear on Oct 6:
As far as his treatment with the Burzynski Clinic: he had to go off ANP Thursday, the day he had his transfusion. He went back on Friday and Saturday but had to go off on Sunday because his potassium was too low. We increased his dose of potassium and he was able to go back on Monday. Everyday his dose of ANP increases and everyday I feel more confident in caring for him. If all goes well, we might be able to go home on Tuesday!!! I am so excited for our little family to be reunited.There have been some small improvements as far as Evan’s disposition. He has been a little more wakeful and moves his arms and legs more. He has also been making these cute little sighs which always make us laugh and warms our hearts. The biggest improvement; Evan has decided that the bottle isnt all that bad.
As the family was preparing to leave Houston on 10/11, a family member noticed that Evan was not tracking objects with his eyes anymore. They also believe he can no longer hear. The MRI shows that the tumor has grown to length of about 7.5 cm. The nurses are crying as the family rushes over the Burzynski Clinic for a follow up. I quote at some length:
Dr. Marquis and Dr. Acelar both feared Dr. Burzynski would opt to remove Evan from treatment. I cannot express the silent panic that entered our hearts when we heard this. We believe God will heal Evan and He will use Dr. Burzynski’s treatment to do it. It is not only vital that we not lose hope but also that our doctors not lose it either. I was scrambling to come up with an argument to keep Evan on. I pointed out all the delays we’ve had that have prevented Evan from being on treatment consistently and I theorized the treatment hasn’t had a chance to really start working. Dr. Marquis agreed with me but stated it was out of his hands. To say we were relieved is an understatement when Dr. Burzynski agreed to continue treatment for another month. He told us that although the tumor has grown, it appears to be dissolving. This dissolving is both good and bad; good for the obvious reasons and bad because dissolving causes more swelling. The MRI also revealed a pocket of fluid that has grown since the previous scan. This would indicate the shunt is ineffective in alleviating fluid from this area and, therefore, if it continues to grow, a second shunt may be necessary.
A few important things here. First I want to point out that Burzynski seems to be responsible for treating Evan. One of the reasons that Burzynski has a medical license today is because his lawyer convinced a judge that Burzynski is not responsible for the activities of the doctors in his employ. I have not (yet) seen a single patient who said that their only and primary doctor was one of B’s underlings. Secondly, we don’t have a good description of the tumor here, but there seems to be a pattern, when the nurses at the real hospital are weeping and the tumor is clearly growing, Burzynski seems to say that the tumor is dissolving. How many times have we heard this already? And of course he continues with treatment.
In early November another MRI is taken:
Written Nov 11, 2011 2:33pm
According to the Burzynski Clinic’s measurements, Evan’s tumor (not including fluid) has grown 30% since his last MRI on 10/11/11. UNMH measures the total mass to be 900 cubic cm.To paraphrase Dr. Acelar: Dr. Burzynski has agreed to keep Evan on treatment another month but in the meantime you need to explore other options.
The ANP is clearly not affecting the tumor, but what’s another month? The family is considering surgery, but it would be especially dangerous.
[Evan’s] PCP wants [us] to start discussing pain management and end-of-life treatment but she is also willing to hear more about the endoscopic procedure.
On the 20th of Nov we hear:
Dr. Hrayr Shahinian said Evan’s tumor is the largest he’s seen and he does not want to put an infant on an operating table if he believes he will die on it. He suggested we put him on an oral chemo drug called temodar to shrink the tumor. If the tumor shrinks a couple centimeters and Evan shows signs of neurological improvement, Dr. Shahinian would be very willing to do the surgery.
The mother has discussed this situation with the oncologist at UNM, and we hear a tale of what sounds like a rather bitter exchange:
Oral chemo sounds simple enough but it has all the side effects and the oncologist at UNM is against prescribing it. He said that Evan’s brain stem is flattened by the tumor and that his brain will not recover even if the tumor shrank or was removed. He brought up what he believes is my misplaced faith in the Burzynski Clinic and I told him my faith lied in God healing Evan. His response was that it was too late for God to save him, the time to save Evan has passed and now we need to love him by helping him die with as much comfort as we can. He emphasized that we lost, Evan is dying. I hear his words, I see the MRI and I understand where he’s coming from. He is the one and same oncologist that was adamant against going to the Burzynski Clinic. He had recommended CCG-99073, the chemo regimen that both St. Jude’s and Texas Childrens had confirmed no survivors for Evan’s type of tumor (without radiation). He is right: Evan is dying. Evan has been dying since the tumor made it’s ugly presence known. The neurosurgeon said Evan has probably always had the tumor, so I guess he’s been dying since the day he was born. He is also wrong: it is never too late for God to heal Evan, miracles happen and we are waiting and praying for ours.
By Dec 1, Evan is in hospice:
GI Track & Sodium
Written Dec 3, 2011 1:26pm
Ok so I’m thinking I should tell you all specifically what needs improvement so we can have focused prayers…Evan’s GI track is still quiet and not working. No bowel movements and very little urine output. He is stuck on IV fluids until it starts working again otherwise anything given to him orally will be vomited back out.His sodium level is alarmingly low. Low sodium causes higher pressure in his head, which you can imagine is not good. Also, as long as his sodium is low, he is unable to start his ANP treatment. We need to see the sodium increase at a safe rate, too fast will cause more damage.
It’s heartbreaking to see this. The ending is not abrupt, but Evan was not in any pain, it seems. He passed away on Jan 21st, 2012.
For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us. As always, visit the patients’ websites for the full story from their perspective.