Wednesday 9 November 2011

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

No comments:

Post a Comment