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[Tgrrrl]

This is the story of my 12 year old son, Derek

 

We have endured many unfortunate situations involving his illness called  Cerebral Blastomycosis.

I am the sole custodial mother of this otherwise healthy 12 year old boy. Also, I am a full time College student with a part time job to make ends meet while in school.

Derek, a soccer player, bike rider who aspires to play football and to go into Auto Body Technology, was never a sickly child. He was vibrant, lively, loved animals and had lots of friends that he loved to spend time with outdoors.

His ready smile, gentle nature and sparkling blue eyes are unforgettable.

I sent him to Camp  in Lake of the Woods on Wednesday June 8, 2005 through a school event.

He returned to me very ill on Friday June 10, 2005.

I haven't since seen my son as I once knew him.

He came to me severely ill, with headache, swollen face and eyes, vomiting and chronic fatigue. He went straight to bed.

I knew something was very wrong.

I took him to my family doctor on June 15th  2005 and he immediately suggested Blasto and mentioned perhaps a blood test and CT scan that was ultimately never ordered.

Derek, still ailing, after 3 weeks of being bounced between 8 doctor appointments, being sent home every time (once from Children's Hospital Emergency – being told that he was “probably into drugs”) he was finally admitted to the hospital due to my persistence and his grave appearance.

That was June 28th 2005. There it was discovered through an MRI and CT scan that he had lesions in his brain including a troublesome one around his pituitary gland.

Again, they thought Blastomycosis was the culprit. Due to Derek's involvement with the area this soil-borne fungus is prolific in, it seemed quite simple.

A biopsy of his brain to confirm this disease was suggested, but not undertaken.

He was discharged July 28 2005 with aggressive steroid therapy and hormone replacement due to the Pituitary involvement. His Pit. Gland had ceased its’ function and has been destroyed by the disease.

He became very bloated. His clothing fit no longer. He remained very tired and nauseous.  Debilitating headaches haunted him 24/7.

Sleep was his only escape from the pain.

He tried to seem well some of the time, but wasn't anywhere near 100%.

Otherwise, he spent the entire summer in the hospital or in bed.

At that time, I was working full time hours   before I started my Full time course at Red River College. I was unable to be there for him, as my work was our only source of survival. He continued to ail in bed while I worked sometimes 7 days in a row.

He has missed all of this school year, too sick to leave bed.

I finally had to give up my job once I began studies at College. I regrettably had to rely on social services to pay our mortgage. It was only me available to take care of Derek and drive him to the many appointments that his undiagnosed illness warranted. I was told over and over again that there was no help for us while he suffered mysteriously and untreated.

My full time studies suffered.
I was beginning to become profoundly exhausted.

Combined, he has been in and out of the Winnipeg Children's Hospital and the Toronto Hospital for Sickids to present day for lengthy admissions.


Dr's finally decided to send us to Toronto’s Sick Kids Hospital after my desperation and determination to attain a diagnosis. We went, with the hope of a biopsy and a diagnosis.

After a surprisingly sudden and undiagnosed discharge from an exhaustive 3 week stay at Toronto Hospital for Sickids, Derek had a stroke 4 days later in our home.
 

With no guidance from the hospital he just left, they failed to inform us that he had developed a dangerous condition in his brain. I rushed Derek into the Winnipeg Children's Hospital on Nov 24 2005 with a life-threatening brain condition called hydrocephalus. He lay dying in the emergency room that night for 6 hours.

I feared that I was now going to lose my only child.

He narrowly avoided death that night.

He has undergone 8 spinal taps, 2 bone marrow biopsies, 2 bone biopsies, 6 brain surgeries, 2 brain biopsies, now has steel plates in his head where they have bored holes into his skull, over 400 blood tests, countless MRI's, x-rays, CT scans, IV's, PICC lines set into his artery because his veins have all collapsed from the constant intrusion of needles, has a Fowley catheter and wore a diaper.

Derek almost succumbed to 2 strokes, hydrocephalus, meningitis during the undiagnosed part of his illness.

The doctors did not know what he had, for lack of a biopsy.  So, they then decided a "probable" case of Neurosarcoidosis - an extremely rare autoimmune disease almost never seen in children.

This was also a disease that could only be confirmed by a brain biopsy. This was not performed and he was started on a radical treatment for this rare disease.

Methotrexate, Solumedrol and Cyclosporin was administered even without a confirmation of the condition. This had left him with painful mouth sores, severe vomiting and delirium.

Things got really bad for little Derek, his health spiraling quickly downward. The doctors feared he would not make it this time.

I was asked if I had “arrangements” ready for him.

Meningitis had developed in his spine.

I continued to believe and pursued the issue that my son may have Blastomycosis.

They refused to treat him with the  very expensive drug needed ( Amphoteracin B ). Their reasoning? There was no biopsy result to prove that he was affected. The medication that is an anti fungal gives extremely complicated side effects.

The doctors kept reminding me of how expensive the drug was.

When I knew that I was now going to lose my only son, my only child, it was then that the Dr's went in and did a biopsy. Their opinion was that Derek “was going in the wrong direction".

The first biopsy during his 4th brain was an imperfect specimen.

They went in through his skull a 5th time to retrieve a 2nd specimen.

This time success. His 5th brain surgery in 3 weeks yielded the answers we suspected all along.

BLASTOMYCOSIS.
 
My once happy, healthy boy, weak, pale and starving had lost all of his dignity and strength through this ordeal. He got so very depressed and moody, having no control over his young life.

He told me how he missed me, his pets and wanted to come home.

We were not able to celebrate Canada Day, Remembrance Day, Thanksgiving, Halloween, Christmas or New Year’s. I sat by his bedside as he slept, coma-like.

He is on TPN (an intravenous Nutrition program) because he hadn't eaten in many, many weeks.

I tried to coax him to eat, usually with a pail by his side because he threw up almost everything he ate and drank. I struggled to bathe him, surprisingly,  he still weighed more than me, combing his blood-matted hair from all the brain surgeries.

That soon ended. His hair fell out.

Derek had to learn how to walk, talk and eat again.

My career had been put on hold. My education, strained.

His medication costs are as follows:
Voriconazole – anti-fungal treatment of Blastomycosis - $ 40,000
Horomone replacement therapy – because Pituitary is destroyed - $ 2000/month for the rest of his life.
Various medications due to the permanent damage - $ 500 +/month

There is no happy ending for Derek. Doctors know nothing about how he will recover, if ever. He has many scars, inside and out, unanswered questions as to why the diagnosis took so long and physical disabilities to deal with for the rest of his life.

I cannot show the pictures of when Derek was in the throes of Blasto – they are too disturbing, but here is one after over a year of hospitalization…


 Thank you for reading our story.
 

 

[Lucky]

Thank you for publishing your story and I am so sorry that you have had to cope with all the pain and misery by yourselves!  I hope that Derek will soon get to feeling better and that both of you can go back to a wonderful life together.  Sometimes doctors need to listen to a mother's ideas since we all know what our children do and how they feel.  I also worry sometimes about my only son. His siblings are all 4 legged critters!  Good Luck to you both and may life continue to be a more healthier and happier time !  Terri , Son "Russell" and all our 4 legged critters including our blasto dog Lucky!

[Tgrrrl]

Thank you for your kind words.

Derek continues to recover, but the permanent damage lurks and remains a question as to when the fungus will be erradicated from his body.

It was determined that Derek was likely exposed to Blasto during a 2 week camping trip in Kenora, Ontario during the summer of 2004 at the same camp and then was re exposed during his 2005 trip.

We ruled out that the infection came from Dryden, Ontario, as my Border Collie, Jet never got ill.

This tells us that Blasto takes a very long time to incubate and likely immunocompromised Derek as his body tried to fight it over that 1st year of exposure.

Regular MRI's and treatment of 400mg of VORICONAZOLE daily ( since Feb 14, 2006 ) are the magic bullet currently.

In September, I had taken the time to write to the Minister of Health in Ontario, Deputy Chief Medical Officer and and few others including the MP for my area asking that Blastomycosis be returned to Ontario's REPORTABLE DISEASES LIST.

I have received a positive response, but await the final word.

Manitoba has put it on the reportable disease list as of 2006, and I have been strongly urging Ontario to do the same.

It reads as follows:

September 19, 2006

Dear George Smitherman,

 I am writing to encourage you to do whatever it takes have North American Blastomycosis put on the reportable diseases list of Ontario by the end of 2006.

 I will share with you the very unfortunate story of my then 12 year old son’s near- death experience with this infection and the comedy of errors that entailed by the medical community resulting in his painful suffering for the duration of one year. It took doctors 7 months to diagnose Derek. After  being extremely ill and bedridden since June 10, 2005, after a 3 week long undiagnosed stay at Toronto’s Sick Kids hospital in November 2005, Derek was rushed back into the Winnipeg Children’s Hospital emergency room, his body finally ready to succumb to the damage caused by Blastomycosis of his central nervous system. Please refer to the attachments of our story.

I have commented below in response to a recent magazine article in MacLean’s magazine. For the ones who have suffered in silence from this deadly organism, I say that enough is enough and a strong stance must be taken to learn more about this mysterious infection.

Blastomycosis. Never heard of it, you say? It can kill you if it isn't treated.  This comment from Jake MacDonald, reporter for Maclean’s Magazine in its August 17 online article. This article written about a mysterious soil-borne spore called Blastomyces dermatitidis. Few know that North American Blastomycosis is a soil- borne fungal infection that is a formidable foe to the unsuspecting victim and their physicians. Those at greatest risk are ones who especially enjoy frequenting the outdoors in Cottage Country.

My letter includes facts about this diabolical disease and how it affects not only the victim and doctors, but the many potential victims who frequent the outdoors. It will further show how perplexing this organism is and I will give my reasons why I feel something must be done by health officials before more damage or death ensues to its human and canine hosts.
 
Presenting itself like a silent predator, it infiltrates the body, unbeknownst to the victim. To individuals in the health field, it is often regarded as a “Boogeyman” or “The Great Mimic” due to the ability to present itself as other maladies such as cancer, pneumonia or tumors.

The author states that living in the woods of Northwestern Ontario has its risks. I believe that this statement is true but incomplete in its scope. In my experience with my son, you do not have to just live there to contract Blasto.
Sometimes, it only takes a short visit to become unknowingly infected.

Secondly, pertaining to the quote from Lyle Wiebe, Environmental Health Program Manager at the Northwestern Health Unit in Kenora, he states that “Manitoba gets a few cases every year”.  Unfortunately, this couldn’t be further from actuality. I have had discussions with health professionals and parents in 2006, alerting me of more cases of people in our region that have been diagnosed or are suspected with cases of Blasto.

There may be more to come, we expect, as the organism often takes up to 120 days to incubate before presenting any symptoms.

One study indicates only 18 per cent of Blastomycosis victims were correctly diagnosed by front-line medical personnel.  I strongly agree when Lyle Wiebe says, "We may be dealing with a lot more cases than we know about." He adds, “It’s a challenge to fight an outbreak when health professionals know so little about the organism and its environment. We've been studying it for seven years, but it's tricky to build assumptions on such a small body of information.”

Dr. John Embil of Winnipeg, who is widely regarded as the world expert on blastomycosis, says that 13 year old Kevin Schneider was probably fortunate to have wound up in the Winnipeg hospital. "Front-line health professionals in this part of the country are becoming quite skilled at diagnosing and treating this disease. But it's less well-known elsewhere."

Blasto is such a rare disease, that, many Doctors – even well – versed ones in the big cities, may have never even heard of it. Personally, I am quite reluctant to call it a rare disease, in the truest form of the word. Why? While witnessing my own son’s infection, and by studying medical databases about this organism’s effects, it has affected me profoundly in the way I regard it.

There must be a different reason as to why many suffer or painfully succumb to this infection, due to misdiagnosis – or no diagnosis at all.  Perhaps this is not at all rare, but in fact, something that has slipped under everybody’s radar for many years due to of the lack of knowledge, as Wiebe suggests. Could it also be due to an attitude of “What you cannot see cannot hurt you? “
Still, Dr. John Embil of the Winnipeg Health Sciences Centre maintains that he is ambivalent about publicizing the outbreak. I reserve a point of contention with this type of ambivalence. Why is West Nile virus given a front – row seat in the eyes of the health officials and general public, but not this equally devastating disease? West Nile was put on the reportable diseases list of Manitoba and other provinces when the first cases presented themselves a few years back. Blasto has long been present in Manitoba and Northwestern Ontario, spanning over decades.

At long last, North American Blastomycosis was recently listed as a reportable disease in the province of Manitoba. It’s no coincidence that it was close to the date when my own son’s life was nearly claimed by Blasto, after he suffered mysteriously for 7 months. From what I see of the West Nile cases published, they seem comparative to the numbers of individuals affected with Blastomycosis every year.

Wiebe and his colleagues at the Northwestern Health Unit are lobbying the government of Ontario to put Blastomycosis on the list of reportable diseases. Wiebe states, "One of the important steps in fighting this is finding out how widespread it is. Right now, there's an awful lot we just don't know."  MacDonald states in his article that in Manitoba and Ontario, where this fungus is prolific, few cases of “Blasto” are relayed to the proper health authorities every year.

I feel there must be a plan made to address the government health officials with the issue that this disease is misunderstood, deadly and poses a continued threat to the general public. Further, there should be a public and political effort to appeal to the Province of Ontario to make this a reportable disease.
Once it is recognized that Manitoba and Northwestern Ontario are an exclusive region housing this spore and by working together to gather pertinent information regarding Blastomycosis; only then will we be able to adequately research and provide early diagnosis. Federal and provincial funding put towards this endeavour would facilitate this further.
I have written several letters to health officials and plan to go as high as I am able to raise awareness. My goal? To see this terrible menace placed on the list as a reportable disease in Ontario, facilitating a proactive approach towards public awareness, research, diagnostics and early treatment.
Our efforts will result in seeing an end to the needless suffering sure to be experienced by its future victims.

Sincerely,

T


MacDonald, Jake  (2006, August 17).  Blastomycosis:the nightmare at
     the cottage. Retrieved August 28, 2006 from ,  Web site:
     http://www.macleans.ca/topstories/health/article.jsp?content=20060828_132435_132435 

[Lisa]

Wow, what a horrible ordeal that seems like it never ends!!

I just wanted to add - don't rule out Dryden just because your dog didn't catch it too.  Blastomycosis is really hit and miss.  My two dogs were together everywhere all the time and only one of them got it (I'm sure it's because she loved to dig near the shoreline in the water).

Lisa
Sault Ste. Marie, Ontario

[Tgrrrl]

There will never be any proof for certain where and when my son contracted the Blasto. I suppose my dog was just alot luckier than Derek was.

What perplexes me is why The Gov't of Ontario removed Blasto from the reportable diseases list in 1998?

I have written several times to the Powers that Be in Ontario with the aid of my MP here in Winnipeg to reactivate the status of this infectious disease.

Even though I have received positive feedback, it has still not been made official for 2007 yet.

Perhaps a petition may need to get started if it falls to the wayside.

There have been many unlucky folks that have also had it that I have met since my son's Blasto in 2005 - 2006.

I do not think that this infection should be taking lives as it has been.

I am glad that there is a possibility to start something on this website... I was going to start one once my studies were completed, but you were able to set up a well laid out website first - That's terrific!

It affects everybody differently, it seems, and remains something that Docs are either reluctant or ignorant to treat immediately.

I have done extensive research over the last 2 years and have many helpful, authorative links to Journal pubs, articles , citations and abstracts to anyone who may be interested, or to pin to the site.

If anyone wishes to reach me and share their stories or info, please do not hesitate![/b][/font][/font][/color]