Up until his 50th birthday Craig Cookson was a happy family man, working as a recruitment consultant, loving music, his guitars, the kids’ activities and volunteering doing gardening and odd jobs at a local nursing home. For years Craig, his wife Samantha and a group of friends performed a charity gig to raise money for the Westmead Childrens’ Rehabilitation Hospital.
Craig and his family are now the ones who need help.
His health problems started about 18 months ago in October 2017, just one day after his 50th birthday. He experienced a seizure and was rushed to hospital Emergency. He has since bounced between hospitals in Wahroonga, Hornsby and Westmead and is currently at Westmead Public Hospital Neurology Ward. His future is bleak.
For more than 12 months, Craig suffered from inter-cranial pressure that not even the strongest of pain-killers could relieve. There were attempts to diagnose his condition and he has undergone 14 significant and specialized surgeries in his neck and brain, plus a brain biopsy and invasive monitoring procedures (details listed below). None of these helped his declining health. The headaches continued and at times were so bad they caused him to become unresponsive for up to 10 minutes. All this time the strength in his lower limbs reduced and his cognisance worsened.
Craig moved to Westmead Public Hospital in October 2018, just after his 51st birthday, where a brain biopsy was performed and a second shunt inserted in his brain to drain more inter-cranial fluid. The headaches reduced significantly and he became cognisant for the first time in months.
Craig has been diagnosed with a rare form of Non-Langerhans Histiocytosis
Histeocytosisis a cancer-like disease that results in uncontrolled growth of white blood cells. In Craig’s case, the disease is presenting in his Central Nervous System, originally his brain and then down his spine.
This presentation is unique and although his medical team has reached out globally and tried numerous treatments, not one has been successful. He has been trialed on an experimental drug arranged by the Sloane Kettering Institute, an experimental research centre in New York and funded by Roche Pharmaceuticals, but that also failed. He has recently undergone 17 sessions of radiation therapy and his doctors are considering chemotherapy.
The disease has progressed and Craig is now a paraplegic. He has little strength in his arms and is not able to support himself sitting up. He requires a hoist, a nurse and a wardsperson to move him from his bed to a special supportive chair. He doesn’t have the strength to hold a spoon so has difficulty feeding himself. He requires 24/7 care.
The prospects do not look good.
Craig’s wife Samantha, and two young children, Jayde in Year 10 and Angus in Year 6 are deeply affected as they’ve watched their husband and father’s pain and deteriorating physical condition. Craig has not worked over this period. Samantha has worked intermittently but regular work is difficult because she is also juggling physically and emotionally supporting her family. Throughout all of this, Craig has remained amazingly stoic. His concern is not for himself but for those he loves.
Their financial and personal situation is desperate.
While there is uncertainty surrounding this disease, there are many things that are certain. Craig will never work again, the medical expenses won’t stop, and his family requires care. After hospital and for the remainder of his life Craig will continue to require 24/7 care in a nursing home with specialised equipment to assist with day-to-day living. He will never be able to return home to his family. It’s bad enough coping with the illness without adding the enormous burden of financial stress. A small amount of insurance comes in each month. This is not enough and will soon run out.
Little things make a big difference for the children, so ensuring they can continue with a few activities is important. They provide a distraction and keep the kids close to their supporting friends. Both kids are now needing counselling and Samantha and Craig have strong peer and family support.
If you are able to help, can you please make a contribution to this campaign?
Any amount would be gratefully received. We hope to remove some of the financial stress from their lives so they can focus on helping make Craig comfortable. Because of the uncertainty they face, they really don’t know the full extent of what they need. We are aiming for $80,000, but the reality is they need so much more. If we raise enough, it may mean that they will not have to sell their home.
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Craig’s surgeries since 2018:
4 x Left transvenous stents
3 x Right transvenous stents
1 x Left styloid process removed
1 x Right styloid process removed
2 x Codman inter cranial pressure monitor into right ventrical
2 x Left jugular stents
2 x Right jugular stents
1 x Left ventriculoperitoneal (VP) shunt (to drain inter-cranial fluid from brain to abdomen) (2018)
1 x Biopsy of brain
1 x Right ventriculoperitoneal (VP) shunt (to drain inter-cranial fluid from brain to abdomen) (2019)
Craig and his family are now the ones who need help.
His health problems started about 18 months ago in October 2017, just one day after his 50th birthday. He experienced a seizure and was rushed to hospital Emergency. He has since bounced between hospitals in Wahroonga, Hornsby and Westmead and is currently at Westmead Public Hospital Neurology Ward. His future is bleak.
For more than 12 months, Craig suffered from inter-cranial pressure that not even the strongest of pain-killers could relieve. There were attempts to diagnose his condition and he has undergone 14 significant and specialized surgeries in his neck and brain, plus a brain biopsy and invasive monitoring procedures (details listed below). None of these helped his declining health. The headaches continued and at times were so bad they caused him to become unresponsive for up to 10 minutes. All this time the strength in his lower limbs reduced and his cognisance worsened.
Craig moved to Westmead Public Hospital in October 2018, just after his 51st birthday, where a brain biopsy was performed and a second shunt inserted in his brain to drain more inter-cranial fluid. The headaches reduced significantly and he became cognisant for the first time in months.
Craig has been diagnosed with a rare form of Non-Langerhans Histiocytosis
Histeocytosisis a cancer-like disease that results in uncontrolled growth of white blood cells. In Craig’s case, the disease is presenting in his Central Nervous System, originally his brain and then down his spine.
This presentation is unique and although his medical team has reached out globally and tried numerous treatments, not one has been successful. He has been trialed on an experimental drug arranged by the Sloane Kettering Institute, an experimental research centre in New York and funded by Roche Pharmaceuticals, but that also failed. He has recently undergone 17 sessions of radiation therapy and his doctors are considering chemotherapy.
The disease has progressed and Craig is now a paraplegic. He has little strength in his arms and is not able to support himself sitting up. He requires a hoist, a nurse and a wardsperson to move him from his bed to a special supportive chair. He doesn’t have the strength to hold a spoon so has difficulty feeding himself. He requires 24/7 care.
The prospects do not look good.
Craig’s wife Samantha, and two young children, Jayde in Year 10 and Angus in Year 6 are deeply affected as they’ve watched their husband and father’s pain and deteriorating physical condition. Craig has not worked over this period. Samantha has worked intermittently but regular work is difficult because she is also juggling physically and emotionally supporting her family. Throughout all of this, Craig has remained amazingly stoic. His concern is not for himself but for those he loves.
Their financial and personal situation is desperate.
While there is uncertainty surrounding this disease, there are many things that are certain. Craig will never work again, the medical expenses won’t stop, and his family requires care. After hospital and for the remainder of his life Craig will continue to require 24/7 care in a nursing home with specialised equipment to assist with day-to-day living. He will never be able to return home to his family. It’s bad enough coping with the illness without adding the enormous burden of financial stress. A small amount of insurance comes in each month. This is not enough and will soon run out.
Little things make a big difference for the children, so ensuring they can continue with a few activities is important. They provide a distraction and keep the kids close to their supporting friends. Both kids are now needing counselling and Samantha and Craig have strong peer and family support.
If you are able to help, can you please make a contribution to this campaign?
Any amount would be gratefully received. We hope to remove some of the financial stress from their lives so they can focus on helping make Craig comfortable. Because of the uncertainty they face, they really don’t know the full extent of what they need. We are aiming for $80,000, but the reality is they need so much more. If we raise enough, it may mean that they will not have to sell their home.
---------------------------------------------------------------------------------------------------------------------------------
Craig’s surgeries since 2018:
4 x Left transvenous stents
3 x Right transvenous stents
1 x Left styloid process removed
1 x Right styloid process removed
2 x Codman inter cranial pressure monitor into right ventrical
2 x Left jugular stents
2 x Right jugular stents
1 x Left ventriculoperitoneal (VP) shunt (to drain inter-cranial fluid from brain to abdomen) (2018)
1 x Biopsy of brain
1 x Right ventriculoperitoneal (VP) shunt (to drain inter-cranial fluid from brain to abdomen) (2019)
Organizer and beneficiary
Samantha Cookson
Beneficiary