Graeme Tumour Surgery Costs, Help Please
$27,355 of $30,000 goal
How does someone cope when doctors tell him or her they have a cancer in their bone marrow that will take their life before they reach the age of their older brother? How does that person look at their 5 year old child and smile, when they ask if they can fly to Disneyland when they are older, knowing he will not be around anymore? How does one cope when battling such a burden, yet another biological attack threatens his life and the quality thereof?
I can't answer that. I can only watch as my younger brother, whom I first saw vomiting from chemo when he was only 11 years old, and who has now beaten into submission another lymphoma, continues to smile, and courageously watches his son play as his mind turns over the news a malignant tumour, a third cancerous attack on his body, has attached itself and entwined around the nerves in his neck. A tumour the neurosurgeons in Brisbane had never seen before and were unwilling to interfere with.
In 1987 Graeme Ardern was diagnosed with Hodgkin's Disease, a lymphatic cancer not common in children, especially 11 year olds. The cancer was prevalent in his abdomen and our family was told to prepare for his death. He lived.
Life's Good, Or Not!
Fast forward to May 2006 and Graeme had now met up with Mandy, a girl he remembered from school, married her, and through the wonder of IVF, a baby was due to the family within the month. Aside from numerous side effects, life seemed to be good.
A hit on the head at work would change all that.
Scans came back and had revealed enlarged lymph nodes. Further scans found lymph nodes through his body were enlarged the early diagnosis was the Hodgkin's had returned. After a biopsy the truth revealed he had Follicular Non-Hodgkin's Lymphoma. He had gone from a rare cancer for his age to one of the more common cancers. However, to get both in a lifetime was a rarity still. At least the cancer was indolent (very slow growing) at present, and he had probably been living with it for some time already.
Days later, Dean was born, a ray of sunshine in the gloom of disease hanging over Graeme and Mandy's head. Then, a day old, Dean was taken into special care for a bleed in his brain. It would be a further month before they could bring their new baby home.
Living in Fear
For the next few months Graeme would undergo a serious of Mabthera treatments which led up to Jan 2007 and the harvesting of his stem cells, a strategy put in place to fight the cancer when it finally ceased to be indolent and attacked with a vengeance we all knew would come one day.
That day would come about 2 ½ years later. 2 ½ years of wondering when the ticking time bomb in his body would go off. 2 ½ years of 3 and 6 monthly checkups, each time fearful, that this time the news he dreaded so much, would finally be spoken by the doctors.
The Battle Begins
July 2010 would see a change that heralded the fight to come. A flu hung in for months and from then on Graeme would feel tired and often short of breath. When Nov came around, scans showed lymph nodes in his groin, under his arms, and in his neck had suddenly ballooned.
By the time 2011 began, Graeme was already undergoing treatments and chemo for the Follicular Non-Hodgkin's Lymphoma that had so aggressively gone from almost dormant to wide awake. The devastating diagnosis was it had also gotten into his bone marrow; the prognosis now was not IF he would die, but when. Optimistic outlooks suggest he could conceivably live with this more than 5 years, but not more than 10, and that was IF he survived this attack.
By the end of April, the initial, aggressive treatment schedule was over, Graeme's immune system was depleted to minimal levels, and the next two years would consist of constant Mabthera treatments to try to keep the cancer at bay.
Graeme would be out of hospital less than month before his ailing immune system allowed the Chicken Pox Virus to force him back with severe chest pains and bed rest for over a month to recover. Subsequent months would see Graeme go from one common cold and chest infections to another, all of which would barely make a healthy adult slow down, but would threaten his life.
The War Rages On
And now we are back in the present, and a tumour, a rare type of tumour Graeme has had most of his life, has come to life itself.
The tumour was biopsied in Dec 2008 and found to be a benign neurilemomma, which, is a rare type of tumor that stems from the nerve. PET scans between Dec 2010 and June 2011 have shown that the tumour is growing, something benign tumours of this type shouldn't do. The Brisbane neurosurgeons had not seen this before and are unwilling to attempt the delicate surgery required to extract the tumour. Extensive radiation from the Hodgkin's Lymphoma when Graeme was 11 years old renders radiation useless as a defense for this also.
A trip to Sydney to see neurosurgeon who has seen this rare type of tumour before has given both hope and heartache.
Dr Mobbs believes he can operate, and the operation is vital due to the now certain malignancy of the neurilemomma, however, the cost is high. An MRI has shown that it is intimately related to the C5 and C6 nerves and the C7 and C8 nerves wrap around it. These nerves control his left arm movement and there is a 30% chance that they could be damaged resulting in a serious reduction of mobility in that arm.
A Better Man
The smile is waning. The energy and vitality in his voice and eyes is beginning to pale. If I had to weather this storm he has fought his whole life, the light would have paled in my eyes a long time ago.
But Graeme wants to live his life as much as he can while he is alive.
Until he draws his final breath, and our lives become much less than they were with his around, he wants to love and enjoy his wife and child as much as can.
He, they, need our help. A little can mean so much.Bank: Westpac
Name: Graeme Ardern Tumour Appeal
BSB: 034 164
Account Number: 114173
I just want to update you all on how Graeme is going.
As you all know Graeme's operation was a success apart from the damage that was left to the muscle and nerves in his arm. He was improving very well and was slowly gaining more use of his arm again until he picked up a flu at Easter. Because he is still under going 8 weekly chemotherapy for his non hodgkins lymphoma, this flu hit him for a six! He was actually bed ridden for 10 weeks and then he was straight back into more chemo.
In June, just as he was recovering from chemo, he was walking down a set of stairs one day with our 5 year old son. Our son tripped and was heading towards a plate glass window at the bottom of the stairs. Luckily for Dean, but unfortunately for Graeme, Graeme caught the back of his pants with the arm that had been operated on, and this resulted with him having to restart his recovery again. I think any parent would have done the same.
The sudden weight on his arm had stretched the muscles and nerves before they had recovered and caused severe pain and uncontrollable nerve twitching again. Once again he was back on morphine patches and drugs to control his nerves.
Having not being able to do anything for 17 weeks was very depressing and frustrating for Graeme but things are looking up again now. He is off his pain medication and in the last 3 weeks or so he has been able to start his physio exercises again.
The doctors are saying that his physio will continue for at least another 18months while his brain learns how to control the nerves in his arm again and he regains strength. He will not be able to go back to work for some time, not only because of his arm, but also because his lymphoma oncologist will not let him.
But at least now he is able to work on getting his arm functioning properly again and he can also spend more time with myself and Dean without being in extreme pain.
Chemotherapy for his lymphoma will continue 8 weekly for at least another 12 months and then it will return to watch and wait. And hopefully in that time they will find a cure!!
Once again, thank you all so much for you support.
Secondly, it has now been one month since Graeme's operation...... doesn't time fly quickly!!! Graeme is doing ok, he is still in pain but is getting better slowly. The wound itself is healing well, the muscle in his neck (which they had to cut through) is still repairing itself and the nerves related to his arm are still causing trouble but improving. It is the muscle and the nerves that are causing the pain. His arm still has numbness in some areas and hypersensitivity in others, along with some pretty funny involuntary movements while the nerves are trying to learn to communicate with the brain again. We are flying back down to Sydney next week for a follow up appointment with the surgeon and if everything is doing ok then he will be able to start rehabilitation. We will let you know how we go with the surgeon.
The Graeme Ardern Tumour Appeal Charity Dinner is on this Friday. Both Graeme and I are looking forward to it. It will be a great night. If you are interest in attending, please go to:
Thanks Mandy (Graeme's wife)
My thoughts are prayers are with you, that God's grace will help you through your surgery and keep you safe and healthy with your family for many more years. Best, Miles
I haven't met you but that is irrelevant , we are all friends and family in the long run. I donated a small amount a week ago and since then I have been passing the message to all my friends and I have posted this link on Facebook 3 times and I run a hiking group which has over 100 members and I have just e-mailed them all about the day at the Strawberry farm on Sunday. I will drive 2 hours to come and support you and Graeme and your family Hugs :) Olinda
It seems few times in your life that you meet someone that you just connect with, who shares the same sense of humor, life morals, dreams. When you do... they probably piss you off for being too alike yourself. In my case, that didn't happen when I met Graeme. We met, we clicked, and our bromance began. I had recently lost a mate to cancer and the shitty thing was... a cure or at least something close too it arrived only 18 months later as gene therapy treatment for melanoma went from dream to reality. In my opinion, we are seeing the same thing happen in Graeme's case. He is fighting. Gene therapy for luecemia and lymphoma cancers is progressing with a huge leap forward taken .http://online.wsj.com/article/SB10001424053111904823804576500490215152596.html I don't know if its all going to happen fast enough for Graeme, but i want to ensure I did all I could to help him try.
Being Graeme's parents, this has been a hard road but even harder for Graeme and Mandy that it has been for us, but being parents you feel every hurt and worry that your kids go through. We would like to take this opportunity to thank every one who donates for this cause. The money has to be paid the day of the operation so we only have around 4 weeks to raise the money for Graeme. Thank you so much Ruth and Murray