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TOM VAN HERCKE'S BATTLE WITH TERMINAL CENTRAL NERVOUS SYSYTEM/BRAIN DISEASE | PLEASE HELP
A LITTLE BACKGROUND
It was nearly two years ago that Tom Van Hercke was diagnosed with an autoimmune disease (Mast Cell Activation) that attacks skin and healthy organs, nervous system and lastly, the brain. For years, Tom has been experiencing symptoms of severe anxiety, chronic fatigue and random sores on his skin. Under the circumstances, stress seemed a logical culprit for many of the mysterious symptoms. However, the neurological symptoms got the attention of DRs and CT scans revealed that the sores on the surface of his skin were invading his internal organs.
Lesions found at the base of his skull were of greatest concern because the nature of this disease is to work its way up the spinal cord until reaching the brain.
In the summer of 2015, Tom underwent a series of aggressive treatments, injecting a chemo/steroid concoction directly into the area below his brain, in an effort to stop the progression. After recovering from these treatments, it was thought that he was in the clear. Although, he continued experiencing persistent headaches, nerve pain, eyesight issues and of course, stress. All of this left Tom homebound for stretches of time, affecting all aspects of his life.
MOST RECENT INFORMATION
October 2016, Tom had a serious of mild seizures after which his vision was more severely affected.
At this time, his DR gave Tom a rather short expectancy which was quite a shock… very difficult to believe possible…
2ND OPINION
On Nov 6th, an MRI of his brain, found massive deterioration of his central nervous system’s myelin sheath (protective coating of nerves) in the cerebellum, brainstem and spinal cord.
He was immediately admitted to Methodist Hospital's Neurology floor and seen by neurosurgeon, Dr. Willging.
Over the next few days, a number of tests were performed as well as a search for effective pain relief.
When Tom was released on Nov 9th, a plan was in place for him to return to the Methodist for a 3 day – 3 week treatment, which (essentially) replaces the immune system.
However, further testing revealed the myelin in his brain stem is disappearing so rapidly that local DRs are flummoxed and have run out of ways to help Tom further.
THE SILVER LINING: 12/1/2016
Mayo Hospital has taking over Tom’s case! We are so grateful to have the best DRs in the world right here, looking over Tom.
His last two tests in Minneapolis are being completed as I write this. Then, he is off to Rochester Tuesday, December 13, 2016). Although terminal, we are praying Mayo has ways to extend his life and improve its quality.
WHAT THIS FUND IS FOR
This fund will be used to help cover medical & travel expenses, transportation, and day-to-day living expenses. Tom would like to spend more time with his sons Jimmy and Will and this will help make that possible as well. * This money will not be used for a tattoo ;) unless you should specify in a note!
The road ahead could be daunting but by the grace of God, Tom has been optimistic that he will beat or put in remission this terminal disease, just as he did with alcoholism, nearly 27 years ago. Either way, he has been experiencing the gift of an incredible peacefulness, consistently over the past 2 months and it has been quite amazing.
We thank you so much for the prayers, love, conversations and meals already given; each has been a blessing that stays with him, as each day he wakes up knowing that he is not alone and is loved.
And now, whatever can be given monetarily will help relieve one of the bigger worries during this difficult time.
Please continue to keep Tom and his boys in your thoughts and prayers.
My name is DeDe Dahl I have Loved Tom dearly for 6 years and hope this helps…
A LITTLE BACKGROUND
It was nearly two years ago that Tom Van Hercke was diagnosed with an autoimmune disease (Mast Cell Activation) that attacks skin and healthy organs, nervous system and lastly, the brain. For years, Tom has been experiencing symptoms of severe anxiety, chronic fatigue and random sores on his skin. Under the circumstances, stress seemed a logical culprit for many of the mysterious symptoms. However, the neurological symptoms got the attention of DRs and CT scans revealed that the sores on the surface of his skin were invading his internal organs.
Lesions found at the base of his skull were of greatest concern because the nature of this disease is to work its way up the spinal cord until reaching the brain.
In the summer of 2015, Tom underwent a series of aggressive treatments, injecting a chemo/steroid concoction directly into the area below his brain, in an effort to stop the progression. After recovering from these treatments, it was thought that he was in the clear. Although, he continued experiencing persistent headaches, nerve pain, eyesight issues and of course, stress. All of this left Tom homebound for stretches of time, affecting all aspects of his life.
MOST RECENT INFORMATION
October 2016, Tom had a serious of mild seizures after which his vision was more severely affected.
At this time, his DR gave Tom a rather short expectancy which was quite a shock… very difficult to believe possible…
2ND OPINION
On Nov 6th, an MRI of his brain, found massive deterioration of his central nervous system’s myelin sheath (protective coating of nerves) in the cerebellum, brainstem and spinal cord.
He was immediately admitted to Methodist Hospital's Neurology floor and seen by neurosurgeon, Dr. Willging.
Over the next few days, a number of tests were performed as well as a search for effective pain relief.
When Tom was released on Nov 9th, a plan was in place for him to return to the Methodist for a 3 day – 3 week treatment, which (essentially) replaces the immune system.
However, further testing revealed the myelin in his brain stem is disappearing so rapidly that local DRs are flummoxed and have run out of ways to help Tom further.
THE SILVER LINING: 12/1/2016
Mayo Hospital has taking over Tom’s case! We are so grateful to have the best DRs in the world right here, looking over Tom.
His last two tests in Minneapolis are being completed as I write this. Then, he is off to Rochester Tuesday, December 13, 2016). Although terminal, we are praying Mayo has ways to extend his life and improve its quality.
WHAT THIS FUND IS FOR
This fund will be used to help cover medical & travel expenses, transportation, and day-to-day living expenses. Tom would like to spend more time with his sons Jimmy and Will and this will help make that possible as well. * This money will not be used for a tattoo ;) unless you should specify in a note!
The road ahead could be daunting but by the grace of God, Tom has been optimistic that he will beat or put in remission this terminal disease, just as he did with alcoholism, nearly 27 years ago. Either way, he has been experiencing the gift of an incredible peacefulness, consistently over the past 2 months and it has been quite amazing.
We thank you so much for the prayers, love, conversations and meals already given; each has been a blessing that stays with him, as each day he wakes up knowing that he is not alone and is loved.
And now, whatever can be given monetarily will help relieve one of the bigger worries during this difficult time.
Please continue to keep Tom and his boys in your thoughts and prayers.
My name is DeDe Dahl I have Loved Tom dearly for 6 years and hope this helps…
Organizer and beneficiary
DEANNA Dahl
Beneficiary