More Specific Info Regarding the Drug Denise Was Trying to Stop

This blog is more specific to the drug Denise was trying to stop.  It should be helpful to doctors, nurses, scientists, or those just wanting more particulars.  If you haven’t read the previous blogs I would urge you to do this first in order to get a general idea of the whole story.  Kai was originally diagnosed with Pre B ALL around Christmas 2007.  He was successfully treated and went into remission.  In August of 2010 he began experiencing problems in his right eye and the doctors speculated that he had a rare relapse isolated to his ocular nerve.

            Once again, thank you for all the support for Denise and Kai.  With the blogs we have kept the story somewhat general to keep the length down so the regular public who are not doctors can get the gist of the story.  Because of the overwhelming support this story is finding its way to doctors, nurses, scientists, and media.  I just want to make it very clear that Denise is not trying to stop all treatment to her son and if she had a choice would even prefer the Erwinea Asparaginase drug she is fighting to be continued.  Unfortunately the reactions are life threatening so she is literally fighting for little Kai's life.  It is very hard with just the general information for the scientifically inclined to know what is going on so I am giving a little more detail here for the more scientific minded.

            The asparaginase drugs are indeed a very important front line drug in the fight against cancer.  They are basically an enzyme which catalyzes a protein called asparagine.  Leukemic cells need asparagine to survive and most importantly to divide. Normal cells can make asparagine on their own.  The goal is to effectively deplete the asparagine in the blood to the point that there is not enough of it for the leukemic cells to continue multiplying.  Hopefully the leukemic cells die and have no offspring so to speak to continue their horrible legacy.

            The drug normally administered to facilitate this process is a drug called Pegylated Asparaginase, known as PEG Asparaginase.  It is actually a derivative of the E. Coli Virus, has been known to have these properties since the 1940s, and has been used as a cancer fighter for over half a century now.  The statistical data of its success is very significant with numerous studies having been done.  Unfortunately, twenty to twenty-five percent of people who receive the PEG Asparaginase have such bad allergic reactions to this drug that they cannot continue to take it.  Little Kai is part of this group.  There are actually two problems with the reaction: 1) the reactions tend to get worse and can cause the death of the patient 2) if a patient’s body has an allergic reaction, their own antibodies destroy the drug rendering it ineffective.  Because of this another drug was developed as an alternative to the PEG version of asparaginase.

            Erwinea Asparaginase is the alternative currently administered here in Calgary.  Unfortunately it does not yet have the same statistical weight behind it as does the drug PEG Asparaginase.  There has simply not been the same number of studies with the same number of patients to definitively prove its effectiveness.  This is most likely the reason this drug has yet to be approved by the FDA in the USA. The scientific data currently shows that Erwinea is far less effective than the PEG Asparaginase.  The consensus is that it takes six to nine doses of the Erwinea Asparaginase to equal one dose of the PEG Asparaginase.  These doses must be given roughly every other day in a course of treatment.  There is no scientific data currently available to show that there is any significant benefit to patients receiving less than the six consecutive doses of this drug.  If a patient is allergic to Erwinea Asparaginase there are the same two problems as stated above for the PEG Asparaginase.

            Unfortunately, with the doctors having full control to do whatever they wanted with Kai, they have not been able to get six doses into him at any time.  In fact the average amount of doses they have been able to give Kai in any treatment course is just over two.  The problem is that the doctors speculated the reactions which were causing Kai to become ill could be from another drug.  Denise, able to witness what happens to her son first hand after the Erwinea Asparaginase was administered, knew in her mind that this was causing her son allergic reactions.  She had witnessed the side effects to the other drugs and by comparison knew he wasn't the same on Erwinea.  As of November 7 2011 the doctors now agree that Denise is right and her son is allergic to the Erwinea Asparaginase.  Considering the drug is ineffective unless a patient has at least six doses and is rendered more ineffective if a patient is allergic, this really resulted in needless torture to her son.  It also delayed many other necessary treatments which could jeopardize Kai's long term chance of cure. 

            This is what started the whole process of Denise losing her parental rights to advocate medically for Kai.  It was stated in court that she wanted to discontinue all treatment.   Now that the drug has been stopped and Kai is safe from anymore reactions Denise still has no rights to speak on her son's behalf.  This is in spite of the fact she was right all along.  Now she must go to the time, expense, and stress of continuing in the appeal to re-instate these rights.  At the same time she will be continuing to take Kai to all of his scheduled treatments and trying to give Kai some sense of normalcy in his life.

Is Johnny Cochran Alive And OJ's Legal Dream Team Reunited ?

               No less than five well respected lawyers gathered outside the courtroom on November 4. They had all come for the same hearing, and remarkably, were all on the same side.  One had to wonder if a high profile athlete was about to walk in with the best lawyers money could buy.  Perhaps it would be a Hannibal Lecter type shackled and led in by guards this team had come to oppose.  The high priced dream team entered the court room discussing strategies amongst themselves as they awaited this mysterious foe.  Just over an hour later a mom rushed into the courtroom with her little boy holding her hand.  She wasn’t desperately running from the villain these lawyers were here to face.  She was the villain.

               This monster had just rushed to the courtroom from the Alberta Children’s Hospital where her son Kai was scheduled to have a leukemia treatment.  Denise had received notice of this hearing only the night before.  She loaded herself with caffeine staying up most of the night just to get some kind of affidavit together.  Denise knew there was evidence to defend her in the form of doctor’s letters and medical records but she would have no way of getting these by morning.  Long before daylight she rushed Kai out the door to swear in her affidavit.  Thankfully an Angel had allowed Denise to come to her home early that morning and witness it for her.  She arrived early for Kai’s treatment as she always does just to find out the schedule had been changed without her knowledge.  Frustrated but hopeful she would have a chance to speak in court on Kai’s behalf she raced downtown to the courthouse.

               As the distraught mother prepared to face off against this bunch I played with Kai outside of the court so he wouldn’t have to witness the debate over his life and death situation.  Denise pleaded with the judge to have the stay on administering one drug, granted on October 19, remain in place.  Denise had watched her son almost die from this drug, Erwinea Asparaginase, because of an allergic reaction the last time it was administered.  It was only one drug out of dozens of drugs Kai had taken as part of his treatment protocol and not even originally part of the protocol.  If the reaction had happened just a little later while Denise and Kai slept her son would not be with her today.

                Many Court Rules were broken by those there to bully Kai’s mom into submission.  Denise was served less than 18 hours before the hearing, evidence was stated as new that was dated as July 6 for a November 4 hearing,  new information was allowed in without Denise having a chance to review or respond to it, that new information was allowed in at all is contrary to Court Rule 12.68.  Apparently the Dream Team was unaware of the rules to be followed.  Unfortunately this didn’t stop the judge from lifting the stay.  Denise would once again have to live in terror as the drug she knew could kill her son was put into him.

               It didn’t take long for her terror to turn to reality.  On November 7, just three days after the stay was lifted, Kai received the Erwinia Asparaginase.  Kai was discharged from the hospital an hour later and went home with his mom to cuddle in and go to sleep.  Hours later Kai was having a severe allergic reaction and Denise was once again rushing him to the hospital that had just discharged him so his life could be saved.  On the earlier injections it had been speculated that it could be another drug causing the reaction and so it was continued despite Denise’s protests until the stay on October 19.  On this occasion there could be no doubt; the only chemotherapy drug Kai had received in days was Erwinea Asparaginase.  This was one time Denise was hoping she wasn’t right but unfortunately she was.

               In a desperate last attempt to make sure her little boy never received this drug again Denise headed back to court the soonest she could.  The earliest court date she could get was November 10 but because Kai was still recovering from his last reaction to asparaginase this would give her time.  She filed an application stating the aforementioned Court Rules being broken and Kai’s latest reaction as grounds to have the stay on the drug reinstated.  When the opposing lawyer got up to speak her heart rose as he told the court  he believed the Erwinea Asparaginase was now discontinued from Kai’s protocol by the hospital.  If this was the case, obviously there should be no danger in the courts reinstating the previous stay of October 19 right?  Denise’s heart quickly sank again as the other side said they would not agree and asked that her application be dismissed.  The lawyer stated the very same rules that he himself had broken only days earlier as a reason for dismissing the application.  The rules apparently only apply if the judge decides they apply because he refused to review the case at all and dismissed her application.  Once again she must go back to living in fear for her son’s life.

               About three quarters of the way through the hearing on November 4 a lawyer from the hospital came out to shush Kai and me as we played.  The only ones left in the courtroom were the ones fighting to determine his future.   This lawyer was quoted in Avenue Calgary Magazine as saying, “The courts are not the most ideal place to resolve these questions, so I try to see whether we can resolve things before we get to that point”, as she talked about her job.  When I asked her before court why her department had never even contacted Denise to try and mediate matters she stated, “It’s not our policy to talk to those without legal counsel”.  How very fitting it was that she was the one to shush us.  Her department and this “Dream Team” of lawyers are clearly there, at the expense of the taxpayers, to shush anyone who does not fully agree with their point of view.

              

Postscript: Denise has received an email from the hospital stating they will not be administering Erwinea Asparaginase to Kai anymore.  While Denise is encouraged by this, she has been told this before.  She will be fighting to get her rights back to advocate medically for Kai on January 12, 2012.  Considering that she was right all along it would be hoped that this would be an easy decision for the courts.  Unfortunately she has relied on the truth prevailing too many times now to be overly optimistic.

Denise's Story

               Denise has run marathons.  She’s completed Iron Man Triathlons.  She climbed the Mount Everest base camp.  It was now time to take the next step in her huge adventure.  She set up a trip to climb Mount Aconcagua, the highest peak in South America.  This would be a true test to let her know how close to ready she was to climb Everest.  Little did she know that the climb she was about to face would dwarf Everest itself.

               At Christmas in 2007 she cancelled her trip to climb Mount Aconcagua.  The light of her life, her little three year old boy Kai, was diagnosed with Acute Lymphoblastic Leukemia.  The girl who couldn’t be kept inside would now be mainly confined to her home and the hospital for years.  Instead of steep cliffs, depleted oxygen, and extreme weather, a whole new group of tests was in store.

               She would have to voluntarily take her son into the hospital and watch him scream as they injected a derivative of the e.coli virus into his quadriceps muscle.  She appeared calm as they jabbed poison directly into her little boy’s spine.  Denise told Kai everything would be ok as they slowly and methodically cooked parts of his brain.  She would hold his hand and watch him cry when he had headaches that weren’t even touched by morphine.  She soothed him knowing it wasn’t the real him as he threw violent tantrums while on Dexamethasone, a steroid 30 times more potent than cortisone linked to road rage and increased domestic violence in adults.  This is just a small sampling of the brutal treatments  to which Kai was subjected  in order to save his life.  Imagine the horror of not just watching your little boy or girl tortured but being the one to take them to the torture chamber and hold them down.  In between hospital visits she would take care of Kai at home when he was sometimes unable to even move because of the side effects.  If she was lucky she might be able to give him some of the drugs at home to save him a hospital day.   Of course inside this made her scream but she never missed an appointment because she knew it was in Kai’s best interest to have these things done.  Two years later Kai was in remission and Denise felt like she had climbed a hundred Everests.  Unfortunately this would turn out to be only the base camp.

               On a holiday to Hawaii in August 2010 Kai began having trouble with the vision in his right eye.  On returning to the Alberta Children’s Hospital in Canada the doctors speculated that the cancer had returned in his ocular nerve, a very rare recurrence.  The nightmare was about to start all over again, only this time it would get even worse.

               Kai had such violent reactions to one of the drugs in his treatment protocol, PEG Asparaginase, that the doctors had no choice but to omit it.  This drug is actually derived from the e.coli virus and they substituted a different drug from the same family called Erwinea Asparaginase.  This drug is far less effective and a child must receive six to nine injections into a muscle to equal one dose of the original drug.  Kai also had reactions to this drug.  Kai’s mom always protecting and always questioning told the doctors in July 2011 that she would no longer consent to this drug.  Knowing Kai was in remission, there were still many drugs in the treatment arsenal, and that she knew her son best, she thought the matter was over.  In reality it had only just begun.

               In July Denise was served with papers to appear in court with less than one week notice to prepare.  To worsen matters the hospital served her with a letter they would be sending to court on the afternoon before she was to appear.  She still wasn’t worried though.   Denise knew she was a good mom, never missed a treatment appointment, and was well informed on Kai’s treatment protocol.  The main thing that gave her comfort was that the whole action to take away her rights to advocate for her son was based on a false statement in a sworn affidavit.  It said that she wanted to completely stop treatment.  Not only was this easily refuted by the fact that she was the one who almost always took Kai for treatments but it was also stated in the letter from the hospital that she only was refusing consent to the one drug.  She went to court on July 14 2011 feeling nervous but confident. 

               Her confidence very quickly turned to horror as she stepped into a huge ambush.  Family services cornered her before the trial even started and said they would take Kai away if she did not sign away her medical decision making rights.  Denise had been facing absolute terror for four years and wasn’t about to be bullied out of advocating for her son now.  She thought to herself that this is a court of law in Canada and the truth will set things right.  She never had a chance.  The judge was told that Denise wanted to stop treatment for her son and this was believed even though she disputed the fact.  The judge quickly skimmed the documents as there was not much time.  Then the Family Services representative spoke.  The judge asked if she had a chance to read any of the information and her reply was, “Your Honour, I haven’t had a chance to read what you have in front of you.”  No break was taken so the Judge or Family Services could actually read the information from either side or the experts involved.  Two minutes later the lady from Family Services told the Judge that if Kai’s mother’s rights to medically advocate for her child were not taken away Kai would be apprehended.  The Judge being cornered into a spot where either the child stay with the mother and her medical decision making rights be taken away or the child be given to strangers and her medical decision making rights be taken away anyway made the only choice she could.  Just minutes after starting the hearing Denise’s voice to speak on behalf of her little boy who she had stuck with through four years of treatments was gone.  A lie by the applicant that would easily have been dismissed if only the information was read started the process.  But worse, a threat from an agency that is automatically trusted by the courts, bullied the Judge into a decision.

               The agency is trusted because they are a government agency that has certain rules, protocols, and legislation that must be followed.  Firstly mediation is supposed to be used if at all possible.  At no time was any attempt made to mediate this matter.  Secondly, if intervention is to be taken, particularly apprehension of a child, a full and thorough investigation is to be conducted.  At no time was Kai’s mom ever questioned, evaluated, or talked to by Family Services until they threatened to take her little boy away in court.  Never did they stop at Denise’s house which is Kai’s main place of residence and check to see if he was properly looked after.  Kai was not questioned by anyone in Family Services.  Not once did they come and observe Kai and his mom at a hospital treatment, the whole issue the case is centered around.  If they did a full and thorough investigation one really must question what it is they investigated.  Last and most important they are supposed to consider the best interest of the child.  Kai was happy with the time he spent with both his mom and dad.  He was always protected and nourished.  If they checked medical records or asked Kai’s healthcare professionals they would know he never missed treatment appointments.  In fact, had they taken time to read the two page letter from the hospital for this court proceeding they would have seen that they were directly contradicting the wishes of Kai’s primary oncologist and healthcare team by threatening to apprehend Kai.  Denise was not about to give up on this matter yet though.

               Denise launched an appeal hoping that those making the decisions would at least read the information this time.  She continued spending money on lawyers, lots of money.  She had to pay thousands of dollars out of her own pocket to obtain medical records which took months to come.  This was in spite of the fact a court order was in place saying she should have access to all Kai’s medical records.  Months later, broke and tired, she continued with the appeal, now representing herself.  On October 19 2011 she went and stood before a judge to plead her case.  The justice did exactly what Denise had prayed for; she actually took the time to read the information and consider the facts.  A stay order was put on the drug she wanted stopped until an appeal could be heard.

 Unfortunately, in the time she was waiting to be heard, Kai had two more reactions to the drug.  The last one occurred on September 7 at home just hours after being administered the drug she was trying to have stopped.  Denise never sleeps when Kai is given the Erwinea Aparaginase drug out of fear for Kai’s life.  This night it was to save his life.  She rushed Kai to the Alberta Children’s Hospital where his blood pressure dropped off the charts, his heart rate raced out of control, and he began gagging as his throat closed and he could no longer get oxygen to his lungs.  The Intensive Care Unit Liaison Team was called in and successfully stabilized Kai to keep him alive.  If Denise had been sleeping like a normal person that night, not closely monitoring Kai, he would be dead.  The debate wouldn’t be whether omitting this one drug from a protocol including dozens of drugs would decrease his four year survival rate from 70% to 68% or if it might be 65%.  Instead we would be talking about Kai Pettifer, August 16 2004 – September 7 2011 and how we could keep this from happening to another child.  With this new hard evidence of Kai’s allergic reactions and a stay on the drug Denise could now put 100 percent of her focus back on getting Kai cured, or could she?

On November 3 at 4:00 P.M. she was once again served.  This time it was for a hearing to be held the very next day at 10:00 A.M.; a day on which she was also scheduled to have Kai at the hospital for treatment at the very same time.  She faithfully took Kai for his treatment as she always does only to find out it was cancelled.  She rushed to the court to try and get some words in on Kai’s behalf.  They must have been very, very scared of this non-lawyer mom representing herself. On top of giving her zero notice to defend herself and scheduling the hearing for a time they knew she was to be at the hospital with Kai, there were no less than five lawyers sitting on the other side of the courtroom as she sat by herself.  Denise did not yet have the medical records from the September 7 incident in order to defend herself and with no time to prepare she was once again caught in an ambush.  The attackers speculated that it could have been another drug that was causing the life threatening reactions.  You would think with Denise having saved her sons life from the reaction, ever so slightly helping out the treatment protocols survival percentage, she would have been given the benefit of the doubt.  This was not the case.  The stay order was lifted and Denise would now have to spend many more sleepless nights watching over her son so he didn’t die from a reaction.

It didn’t take long for her devotion to save his life once again.  On the evening of November 7, just hours after being injected with the drug Erwinea Asparaginase, Denise was on her way back to the emergency room.  Kai had once again reacted very violently to the drug despite the fact he was pumped full of the powerful steroid Dexamethasone to prevent such a reaction.  This time there could be no question.  The chemotherapy administered that day consisted of only one drug, Erwinea Asparaginase.  No more speculation.  Denise was sure this time to take her own pictures and do her own documentation so she would not have to wait months for medical records to have evidence to stop the drug.

The climb for Denise and Kai continues.  Kai remains in remission but continues to undergo treatment.  Unfortunately this last reaction to Erwinea has pushed all of his scheduled treatment back as he recovers.  Denise is hopeful the doctors will stop the drug on their own but doesn’t want to bet Kai’s life on it so is back at the Court of Queen’s Bench in Calgary representing herself on November 10 at 10:00 A.M.  The address is 601 - 5 Street SW, Calgary and supporters are welcome.  The hearing to get her rights back to advocate for Kai is scheduled for January 12 2012.

Although lengthy, this story just scratches the surface. If you would like to write an article on this story, interview Denise, share a similar story, or simply pledge your support you can email Denise at denisebarton@abetterme.ca