First Symptoms
by Michelle (Jesse's Mum)
At only a few days old Jesse was a very unsettled baby, and over the next couple of weeks I was concerned that something was not quite right. On advice from my midwife Jesse was referred to a cranio-osteopath as it was thought Jesse may have possibly hurt his neck during delivery. He had 3 weeks of sessions but it didn't seem to help, after discussing possible allergies and intolerances it was decided that Jesse was just getting used to his new world and he would eventually settle.
By 3 months of age Jesse had developed a "flat head" even though we had tried changing his sleeping position, wedges, rolls etc to encourage him to sleep on his other side, these things didn't work. Jesse also had his 12 week immunisations and became very sick. The following week we noticed Jesse's face had drooped on one side, he also became sick again so we took him to the A&E. Jesse was diagnosed with Tonsilitis, we were concerned about his facial palsy and raised our concerns with the Doctor but were assured that there was nothing to worry about and sent home with Antibiotics.
A few months later Jesse became very ill, vomitting, seizuring and feverish, we rushed him into Starship Childens Hospital where he was diagnosed with a viral infection. We again raised our concerns with Jesse's doctor about his facial palsy and were again reassured it was nothing to worry about, that he was a healthy little boy. We weren't prescribed any medication as it was a viral infection and were told to take Jesse to his GP if his symptoms worsened.
A couple of days later Jesse had worsened so we visited his GP who diagnosed Jesse with having a very bad bacterial throat infection, Jesse was prescribed antibiotics and we were sent home. On arriving home we noticed Jesse had developed a rash all over his body. I rang Jesse's GP and spoke to a nurse who said the rash was most likely Chicken Pox and that I should wait to see what it developed into. Not happy with this advice we took Jesse to the A&E for a second opinion, the docotor diagnosed Jesse with having Strepthroat, the rash was not Chicken Pox but Scarlet Fever a side effect of the toxin caused by Strepthroat, he prescribed Penicillan a much stronger Antibiotic than what Jesse was currently on and Jesse came right within a few days.
At only a few days old Jesse was a very unsettled baby, and over the next couple of weeks I was concerned that something was not quite right. On advice from my midwife Jesse was referred to a cranio-osteopath as it was thought Jesse may have possibly hurt his neck during delivery. He had 3 weeks of sessions but it didn't seem to help, after discussing possible allergies and intolerances it was decided that Jesse was just getting used to his new world and he would eventually settle.
By 3 months of age Jesse had developed a "flat head" even though we had tried changing his sleeping position, wedges, rolls etc to encourage him to sleep on his other side, these things didn't work. Jesse also had his 12 week immunisations and became very sick. The following week we noticed Jesse's face had drooped on one side, he also became sick again so we took him to the A&E. Jesse was diagnosed with Tonsilitis, we were concerned about his facial palsy and raised our concerns with the Doctor but were assured that there was nothing to worry about and sent home with Antibiotics.
A few months later Jesse became very ill, vomitting, seizuring and feverish, we rushed him into Starship Childens Hospital where he was diagnosed with a viral infection. We again raised our concerns with Jesse's doctor about his facial palsy and were again reassured it was nothing to worry about, that he was a healthy little boy. We weren't prescribed any medication as it was a viral infection and were told to take Jesse to his GP if his symptoms worsened.
A couple of days later Jesse had worsened so we visited his GP who diagnosed Jesse with having a very bad bacterial throat infection, Jesse was prescribed antibiotics and we were sent home. On arriving home we noticed Jesse had developed a rash all over his body. I rang Jesse's GP and spoke to a nurse who said the rash was most likely Chicken Pox and that I should wait to see what it developed into. Not happy with this advice we took Jesse to the A&E for a second opinion, the docotor diagnosed Jesse with having Strepthroat, the rash was not Chicken Pox but Scarlet Fever a side effect of the toxin caused by Strepthroat, he prescribed Penicillan a much stronger Antibiotic than what Jesse was currently on and Jesse came right within a few days.
Jesse at 3 months of age showing first signs of his facial palsy, one side of his face has drooped
Head Tilt and Eye Rolling
As soon as Jesse began walking; at 13 months of age, he developed a head tilt, we also noticed his eye would also drift. At his Plunket checkup the nurse was concerned so referred us to an Opthamologist. She believed Jesse may have an "eye squint" or a lazy eye which was causing his head tilt, she also noticed Jesse had an unusual gait and was concerned about his balance and walking.
Not happy with the waiting time through the Public System 3-6 months for a priority case, we decided to take Jesse to a see a specialist privately. We took Jesse to a specialist eye clinic where he had 2 consultations and a series of tests and was diagnosed with an eye squint. The surgeon recommended strabismus eye surgery which had a 90% success rate. We were told that after surgery Jesse's head tilt would resolve immediately, both his eyes would align and he would be able to see perfectly which would resolve his balance and walking issues. Because Jesse was falling behind physically we felt it was in his best interest to have the surgey as soon as possible. Not knowing how long he would have to wait on the public waiting list we booked him in for surgery in 3 weeks time. We were so pleased and excited for Jesse, after the surgery we were hoping to see a renewed confident little boy, able to run and play without falling over or walking into things, the surgery promised to give him this.
Not happy with the waiting time through the Public System 3-6 months for a priority case, we decided to take Jesse to a see a specialist privately. We took Jesse to a specialist eye clinic where he had 2 consultations and a series of tests and was diagnosed with an eye squint. The surgeon recommended strabismus eye surgery which had a 90% success rate. We were told that after surgery Jesse's head tilt would resolve immediately, both his eyes would align and he would be able to see perfectly which would resolve his balance and walking issues. Because Jesse was falling behind physically we felt it was in his best interest to have the surgey as soon as possible. Not knowing how long he would have to wait on the public waiting list we booked him in for surgery in 3 weeks time. We were so pleased and excited for Jesse, after the surgery we were hoping to see a renewed confident little boy, able to run and play without falling over or walking into things, the surgery promised to give him this.
Jesse's head tilt and eye roll
Misdiagnosed & Unnecessary Eye Surgery
One week after Jesse's surgery we returned for his follow up at the eye clinic. We raised our concerns with Jesse's surgeon that we didn't think the surgery had worked. Jesse's head tilt hadn't resolved, his eye rolling had worsened and his balance and walking had not improved. We were told not to worry as it would take time for the eye to heal and were advised to come back for another follow up in 6 weeks to allow time for the healing to take effect and that we would see an improvement in Jesse over the next 6 weeks.
6 weeks later we returned for our second follow up. His eye had healed but Jesse had not improved, his head tilt remained, his eye rolling and balance problems had worsened. The surgeon recommended a second eye surgery, apparently Jesse fell in the 10% of unsuccessful surgeries. Unhappy with this we asked if we could seek a second opinion to make sure there was nothing underlying that might be causing Jesse's problems. The surgeon agreed and in hindsight suggested that maybe she should have ruled out any other causes before performing the surgery. We were then referred to a Paediatric Neurologist.
This is when our world came crashing down. The Paediatric Neurologist immediately organised an MRI which revealed a 2cm by 2cm lesion on Jesse's brainstem and it was "inoperable".
6 weeks later we returned for our second follow up. His eye had healed but Jesse had not improved, his head tilt remained, his eye rolling and balance problems had worsened. The surgeon recommended a second eye surgery, apparently Jesse fell in the 10% of unsuccessful surgeries. Unhappy with this we asked if we could seek a second opinion to make sure there was nothing underlying that might be causing Jesse's problems. The surgeon agreed and in hindsight suggested that maybe she should have ruled out any other causes before performing the surgery. We were then referred to a Paediatric Neurologist.
This is when our world came crashing down. The Paediatric Neurologist immediately organised an MRI which revealed a 2cm by 2cm lesion on Jesse's brainstem and it was "inoperable".
The Worst Day of our Lives
Friday the 2nd of September 2011 will be forever etched in our memories as the worst day of our lives.
Our hearts sank as soon as the consultant, neurologist, surgeon and nurse came into Jesse's room to deliver the MRI results. We knew as soon as we saw them that the news was bad. Jesse was still recovering from the anaesthetic, they each pulled up a chair, sat down and the surgeon uttered the words no parent ever wishes to hear "your son has a brain tumour".
I remember sitting there still cradling Jesse in my arms, he was just coming out of the Anaesthetic, Shane and I looked at eachother we didn't say a word but we knew exactly how the other felt. We let the doctors talk and we were then moved into another room to view the MRI scan on a big screen, the doctors talked some more, "inoperable", "nothing we can do" , "buying more time" , "chemotherapy" their words became a blur and as the full realisation of what was happening hit me I broke down and cried.
Our hearts sank as soon as the consultant, neurologist, surgeon and nurse came into Jesse's room to deliver the MRI results. We knew as soon as we saw them that the news was bad. Jesse was still recovering from the anaesthetic, they each pulled up a chair, sat down and the surgeon uttered the words no parent ever wishes to hear "your son has a brain tumour".
I remember sitting there still cradling Jesse in my arms, he was just coming out of the Anaesthetic, Shane and I looked at eachother we didn't say a word but we knew exactly how the other felt. We let the doctors talk and we were then moved into another room to view the MRI scan on a big screen, the doctors talked some more, "inoperable", "nothing we can do" , "buying more time" , "chemotherapy" their words became a blur and as the full realisation of what was happening hit me I broke down and cried.
Biopsy and Hope, a Roller Coaster Ride of Emotions
We took Jesse home that same day, bioposy surgery was booked in 2 weeks time. We decided to make the most of the time we had, we took Jesse to the Zoo because he loves elephants, we went to Kelly Taltons Underwater World because Jesse loves fish and we informed our devastated family of the bad news.
Jesse's surgery was unexpectantly brought forward and 3 days later we were back in hospital while Jesse underwent a very risky 5 hour brain biopsy.
Jesse's surgery was unexpectantly brought forward and 3 days later we were back in hospital while Jesse underwent a very risky 5 hour brain biopsy.
Immediately after surgery we were given some unusual news. The initial pathology result came back as possibly "infectious" no tumour tissue was found. We couldn't belive it, we began to believe that our little boy would be ok. Jesse spent the next 7 days in HDU and recovered so well he was home a week later. It took an agonising 2 1/2 weeks to get the full pathology results. It took so long because they couldn't confrm a diagnosis, overseas experts were also consulted but the pathology had never been seen before, it was still being classed as either an infection or a tumour but they were stumped as to exactly what it was or how to treat it. We were told it was a "medical mystery".
This was the best news we could have hoped for under the circumstances, they couldn't find any tumour tissue and it could possibly be some type of infection? We began to hope that Jesse would be okay.
Over the next several weeks we were still in the dark. The medical professionals still did not have a diagnosis. The next step was to do another MRI with a view to performing another biopsy to get more tissue for diagnostic testing. As parents we were wary of putting Jesse through another risky brain operation, the New Zealand Herald ran a story on Jesse in the hopes that someone might shed some light on Jesse's illness.
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10762405
This was the best news we could have hoped for under the circumstances, they couldn't find any tumour tissue and it could possibly be some type of infection? We began to hope that Jesse would be okay.
Over the next several weeks we were still in the dark. The medical professionals still did not have a diagnosis. The next step was to do another MRI with a view to performing another biopsy to get more tissue for diagnostic testing. As parents we were wary of putting Jesse through another risky brain operation, the New Zealand Herald ran a story on Jesse in the hopes that someone might shed some light on Jesse's illness.
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10762405
2nd MRI and Finally a Diagnosis
In November Jesse had his second MRI. We met with the Surgical Registrar and Jesse's Surgeon to go over the results, it was not the news we had been hoping for. The MRI showed a slight increase in the tumour size, the MRS confirmed tumour activity, and a pathology report had come back from the Childrens Hospital in Toronto Canada as a "Ganglioglioma" tumour. A very rare tumour which presents in less than 1% of all brain tumours world-wide. Jesse probably had this tumour from birth, we now know he had it at 3 months of age when his facial palsy showed up. Our hopes were crushed. Again sitting in a tiny little room, Jesse's surgeon left, the registrar continued to explain the results, we were calm, there were no tears, I felt numb. I had my big red notebook with me, in it I had pages of research, questions to ask, but we still weren't prepared for what we had been told, it was confirmed our son had Cancer, I wasn't ready to hear those words, maybe I was in denial, still hoping for a miracle.
Cancer and a meeting with Jesse's Oncologist
Everything moved on very quicky from here, we felt like we were being shuffled out of the room, sorry Bessant family we can't do anything for your son, thank you for your time, good luck and good bye. We hadn't even had time to digest Jesse's diagnosis when we found ourselves meeting Jesse's Oncologist and discussing the merits of chemotherapy, brain shunts, hydrocephalus. The Oncologist did his best to explain the tumour to us, working in Jesse's favour was that Gangliogliomas can be very slow growing low grade tumours, what was not working in Jesse's favour was the location of the tumour in the brain stem, he made it very clear that chemotherpay and radiation treatment had shown no benefit in treating these Ganglioglioma's overseas. Our best option would be to adopt a "wait and watch" approach, to monitor the tumour growth and only intervene if absolutely necessary or when Jesse's condition deteriorates. Surgery was still out of the question due to the high risk of neurological damage, disability and fatality. Jesse's next MRI was booked for February 2012.
Potentially Life Saving Treatment Overseas
We were unable to accept that nothing could be done to save our little boy, we had done a lot of research into alternative treatments for cancer and brain tumours. We believe Jesse's best and only hope for survival is a ground breaking gene targeted anti cancer treatment called "Antineoplaston Therapy" being conducted by the Burzynski Clinic in Houston, Texas, USA. The therapy is currently in Stage 2 FDA approved clinical trials, the clinic is reporting a 30-50% success rate in treating cancers and brain tumours. Jesse is a good candidate for the therapy, however it is very expensive and we are now fundraising to get Jesse to the Clinic to start treatment.
Jesse Today
Jesse just celebrated his 3rd birthday. Although he suffers with headaches, struggles with his balance, speech and walking he is still a very happy loving little boy. Jesse absolutely loves Cars and Speedway. His favourite movie of all time is Disney Cars 1, and during the summer months on a Saturday night you will usually find Jesse cheering on his favourite drivers at our local speedway track.