Max and a Brain Tumour that Changed Everything!

Eye on the ring.  Max at Heartwell in 1999.

One of the most endearing and memorable children to have come Through Our Door is Max.

In late February 1998, Max then 17 strode into our office accompanied by his mum and dad.  From the outset we knew Max was a totally unique and special character and to this day we have very fond memories of him and his larger than life personality.

Diagnosed at 8 with a brain tumour (Cerebellar Astrocytoma), Max underwent surgery and in his own words ‘this changed everything’.  This left Max with poor coordination, facial muscle weakness (Bell’s Palsy) and having to relearn how to walk, talk, sit up and feed himself.  Max became the victim of constant bullying and teasing because he looked and moved differently to his peers.  He became a very angry young boy.  To Max's credit by the time we met him he had overcome this and we never saw that side of him.  He was consistently positive and encouraging of all around him.

When his tumour returned seven years later requiring further surgery, Max was referred to us to regain his fitness and skills and self confidence.

In the Heartwell environment, Max flourished.  He accepted every challenge and although starting from a very poor endurance base, he quickly progressed and it was marvellous to witness his work ethic and desire to improve.

Everyone loved Max and his confidence and willingness to speak about what he had been through became inspirational.  Max accompanied me on many occasions to speak to groups of business people and students about himself and Heartwell and his personality, his self deprecation and his presence had people riveted.

Max spent three years with us at Heartwell.   He went on to finish secondary school and graduate from University.  The last we heard from Max was a couple of years ago when he rang to say he was getting married the next day.  He was so excited and happy and we were thrilled for him.  Max has an amazing insight and a quirky way of looking at the world and he often amazed us with his thoughts and philosophies.

Hard to believe that Max would be in his early 30’s now and wherever he is and what ever he is doing, we are sure that he is as popular and as well loved as he was all those years ago when he came Through Our Door.

Max.  A true individual.

Julienne and Scott with Max at his 21st Birthday Party (2001)

Magic Matty!

Three times a week a young man walks Through Our Door and lights up the Heartwell office and gym! His name is Matthew and we all love his larger than life personality.

Matthew is thirteen and he has a Developmental Delay. When he was a baby, at only eight months of age, Matt had open heart surgery. 

At two and a half, he had a liver tumour removed. 

Matt now has high frequency hearing loss, speech difficulties and low muscle tone.

What having a Developmental Delay means for Matty is that when growing up, he was slower to reach normal growth milestones. This has now affected the way he moves, communicates, thinks, learns, and behaves with others. Yet despite all this Matty is a delight to be with.  He bounces through the Heartwell door ready for his session and with a huge smile on his face. 

Matty loves the exercise equipment and works hard on his skills particularly in basketball and footy (he is a mad Hawthorn fan).

Like other children, Matty will continue to learn but will take longer to acquire new skills. He will learn in a slightly different way, requiring skills to be broken down into smaller, simpler steps and having more repetition and practice.  

Matthew has a cheeky grin, infectious laugh and is constantly interested in everything going on around him. He loves to tell us about what he has been doing, particularly in his cooking classes at school. Often there is a tell tale sign left on his shirt that tells us he loves eating his food creations as well!

Matty has made great progress since being with us. His attitude to activity and involvement has changed for the better and so has his fitness levels. Matthew loves to challenge himself on the stationery bike, where he is convinced he can win the Tour de France.

Matty engages with all the Heartwell kids and loves to give us a big hug when he leaves.

Yes, there is some magic about Matty!

Matty today on the bike.  Peace 

Goodbye Ben. You Were Amazing.

A follow up from my previous post about Ben.

Sadly I have just learnt that Ben passed away over the weekend.

He lost his 18 month battle with Acute Lymphoblastic Leukaemia.

I feel very sad but very grateful for having spent some precious time with him in the last weeks of his life. He was determined to have a go in the water and he did so with so much enthusiasm. You are inspirational Ben. We all need to live our life like that.

Ben Loves Swimming.

I want to talk about Ben who I have only met recently.  He turned nine years old a couple of weeks ago and sadly he is not very well.  One of the things Ben used to enjoy before he became unwell, was swimming.  He wanted to get back in the water and have some fun but he requires much support.  Hence to my good fortune I had the opportunity to meet the amazing Ben.

In the past month Ben has also developed sudden onset total vision loss.

A scary predicament to be in a noisy, unfamiliar public environment and to attempt physical activity in total darkness and with little muscular strength or endurance.   Not for Ben.  He is amazing.  With a slow start we quickly progressed to duck diving, floating, various strokes, somersaults and finished with a massive bomb.  It really was a big splash Ben!!

Ben has not been in the water for years, but no one would have known that.  Any activity I suggested we try, he is up for.  He really is very inspirational and brave.  Well done Ben, great swimming.  I hope you are reading this!

Ben and myself last week.

Michael and Prader-Willi Syndrome

Michael was 6 years old when we first met him and he had Prader-Willi Syndrome (PWS). That was 16 years ago, and it is not an initial assessment/meeting that I am going to forget in a hurry.  Michael was small and compact and very cute.  He had big brown eyes made even bigger by the round reading glasses he wore.  He loved to talk and had asked twenty questions within the first 5 minutes of meeting.  Fair to say I needed a strong coffee and a sit down after that first session.

Prader-Willi Syndrome is a congenital disorder (meaning that you are born with it) and is caused from an abnormality on the 15th chromosome.  PWS typically causes low muscle tone and short stature if the child is not treated with growth hormone.  The child is usually born with underdeveloped genital organs.  The child with PWS usually faces learning difficulties, behavioural problems and motor development delays that can continue into adult life.  People with Prader-Willi syndrome often have obsessive-compulsive behaviour-they may hoard possessions and show repetitive habits such as picking at skin or hair.  Some individuals can be more severely affected than others.

Another heartbreaking symptom of Prader-Willi Syndrome is that food becomes an insatiable obsession.  Although children with Prader-Willi syndrome are always voraciously hungry, they actually require slightly fewer calories than a normal child,  and coupled with a metabolism that utilises drastically fewer calories than normal, it can be particularly difficult to control the child’s weight.  In addition, the child may go to great lengths to get food.  Parents and carers may have to take strict measures to control food intake.  The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. 

Michael had a really sweet and loving personality, which is also typical of children with PWS.  During his initial assessment Michael really challenged our teaching skills.  We found it quite difficult to measure any of his physical capabilities, as it was so tricky trying to keep him on task.  He was very fixated on locks and doors and spent a bit of time trying to go from door to door - to escape we thought!  When we went outdoors for the skills assessment, we had him trapped in a closed and fenced environment.  That was interesting, like watching a miniature burglar trying pick a lock.  After the lock picking, question asking, and concentration span of about 2 seconds of his assessment, I really needed that coffee!

Michael went on to make great progress with us at Heartwell.  He worked with us for about five years finishing when he was about to start secondary school.  He would attend regularly during that time, two sessions a week at 7.15am - while his Dad snuck off for an early morning wake up coffee.  Michael was very rigid is his approach to his program and any deviation or attempt to introduce a new activities was frowned upon.  We had to be very sneaky.  He wanted to ride the bike for 8 minutes exactly and he had to have the blue mat to stretch on.  He had to use the orange ball to catch with and the long red bat to hit with.  Despite all of this, he made excellent progress and over time, and he became much more accepting of new activities and challenges.  He kept himself fit and his weight under control.  He learnt new skills to use in the school play ground.  He had some fun.

A nice post script to this is that Scott ran into Michael’s dad a few years ago at an event.  His dad said how well Michael was doing and how much the family appreciated Heartwell’s early intervention with him.  Despite all those early morning starts, they still remember Heartwell with fondness.  That’s nice. 

Michael 1998.  "I love the blue mat".

Prader-Willi Syndrome Website

Patrick

Patrick is here now, working out hard in the gym.  He is in Year 9 at school and he is about to turn 15 years old.  This is the our fifth year of knowing Patrick and of him attending the Heartwell Foundation.  Boy, has he come a long way in that time.  In many areas.  He is now an absolute pleasure to work with and a great conversationalist.  I think it would be fair to say that his session time here at Heartwell, is mutually enjoyed.  That has not always been the case!

Patrick has Cerebral Palsy (CP).  CP is an umbrella term encompassing a group of non-progressive, non-contagious conditions that cause physical disability in human development.  Cerebral refers to the cerebrum, which is the affected area of the brain and palsy refers to disorder of movement.  CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth, or after birth up to about age three.  It is a non-progressive disorder, meaning the brain damage does not worsen.

Patrick has spastic diplegic athetoid CP.  This means his lower extremities are affected more than his upper extremities.  It also means by having athetoid CP he has trouble holding himself in an upright, steady position for sitting or walking.  For Patrick it also means he has significant involuntary movements, especially of his legs.  If Patrick’s legs are not strapped into his wheel chair they will kick out.  His feet will be constantly moving and unable to stabilise his body.  He takes medication to help control this movement and at the moment there is a noticeable difference in the “calmness” of his body.

Back to Patrick’s improvement over the years. 

Today a very different boy than five years ago came Through Our Door for his session.  Patrick has grown into an engaging and motivated young man, driven by (in his words) “limitless opportunities”.  As a 10 year old primary school boy he was not always an obliging happy chappy.  What we were asking him to do was, for him, boring, unnecessary and time wasting.  Skill work was hard, arm cranking was even harder, stretching was no fun.  Heartwell’s goal was to find an activity that Patrick could feel successful doing and allow him to be physically active.  We want him to develop a life long love of activity.  Thank goodness for perseverance (on both fronts).

Patrick now attends two sessions weekly with us.  He is concentrating on a resistance training program to develop his upper body strength and endurance.  He does interval work on the arm crank to further develop his aerobic fitness.  He has started to pop some nice bicep/tricep action which we are all quite admiring of.  The days of stalling and questioning seem far away and we are proud of Patrick’s achievements.  Keep going Patrick - onward and upward.

Too cute.  Patrick in 2007

Patrick today working that arm crank.

Today, working those triceps.

Today, pull down.

Cheese.

Today, I am focused!

Jason is a Trooper.

Jason works hard in every session.  He always does his best, tries as hard as he can.  Jason is 9 years old and he has been coming to Heartwell since October last year.  He is a real trooper and great to work with.  He was referred to us by the Victorian Paediatric Rehabilitation Service (VPRS) at Monash Medical Centre.

Jason was diagnosed with a medulloblastoma at the age of 20 months.  Medulloblastoma is a highly malignant primary brain tumor that originates in the cerebellum or posterior fossa.  He had the tumour resected (surgically removed) and then followed a course of chemotherapy, all before he was 2 years old.

Jason is now in remission.  

He now presents however, with a few problems.  He has 20% vision loss in his left eye.  When we met him 5 months ago he had just had his plaster removed and was recovering from a fractured left arm.  One of his personal goals, and that of his physio, was to reduce his constant tripping/falling at school due to his poor balance.  Jason also wanted to feel less tired and fatigued all the time.  He wanted to improve his opportunity to participate in sports and physical education at school.  

There are many things we work on with Jason.  He needs to learn how to hop and skip.  He needs to learn to throw and catch balls, despite his poor vision.  He needs to learn to control his momentum when he is moving and running about.  He needs to learn to track objects as they move towards him.  He needs to learn he can do all these things and lots more now he is being taught.  He needs to improve his confidence.  He needs to learn to believe in his ability and that he can participate and be involved in school sport - so that he will have a go.

In an unbelievable twist to Jason and his parents story of courage and resilience, is the story of Jason’s baby sister, Kelly.  Kelly was 2 years old and two years younger than Jason when she passed away from the same tumour-medullablastoma.  Jason’s parents had two children, both very young, undergoing cancer treatment at the same time.  Apparently the chance of siblings having this same tumour is so rare it’s said to be one in a million.  They are a very courageous family.    

Jason has made good progress and continues to do so.  He is fitter and stronger and we look forward to watching him grow and develop further this year. 

Lets do some change of direction work.

Jason and Scott