Guest Post

 A health crisis does not only impact the person that it is happening to, it also reaches that person's family and friends. But above all I think the person who is impacted the most is the spouse of the individual( if they have one). 
The news of my tumour has affected my husband just as much, if not more so than  it has affected me. 

When a couple is married they exchanged wedding vows, and one of the phrases in the traditional vow is: "in sickness and in health". When couples exchanged these vows do they actually acknowledge what they are truly saying and committing to? Are they really paying attention to the actual meaning of those words?
When my husband was saying those words to me on our wedding day, little did he know that five years later he would find out that his wife had a tumour and he would have to live up to the "in sickness" part of the promise  he made when stating those vows.
 For the most part he has been very true to those words . . . in the best way that he can be. He has had some downs along the way, but I know it is because this unfortunate situation is out of his control, and for him that is no good, he likes to fix things and this is one thing that he cannot fix. Under these circumstances our marriage has been put to a test. . . 

Metaphorically speaking, I know that once we conquer this mountain in our life together that any future hills we stumble upon  will take very little effort for us to climb. 

A while ago I asked my husband if he wanted to do a guest blog post about how he was  feeling about all this, he was a little hesitant at first but then he agreed to it.
So on behalf of my husband here are his thoughts about the situation that life threw our way. . .

 (Please Note: My husband is not one to swear, and I was going to edit his first line out because I didn't want those of you who don't know him to think that he has a potty mouth, but I left it in because that is how he was feeling).

"F&#K YOU  TUMOUR!

Although the anger is fading as I've accepted my new reality, I still find myself mourning the life I had and the life I thought I would be having moving forward.  It’s taken me a few months to put my selfish thoughts away and really get focused on what Eileen needs now.  Love and support.

Here’s the email I sent to my boss at 11:34am on Thurs Feb 20^th.

Got a call from my wife.  She got her medical results back from her MRI on Monday.  Doctor asked her to come in ASAP and now she’s in a flat panic.  Doctor offices need some customer empathy training.

The next few days  I was living in a blur and did my best to appear strong.  And by appear strong I mean adopt the emotional state of a rock.  Not helpful, but it kept me from breaking down.  It wasn't until my first day back at work that it really hit me.  I was in the office nice and early to catch up on emails and another early rising coworker casually asked “How are you doing?” as he walked by.  How was I doing?  Did he want my honest answer?  I had a total and uncontrollable melt down.  Right in the office.  Luckily it was still early and the office only sparsely populated.  I quickly made my way over to my former boss’ office and asked to speak with him.  Like a true master, he calmed me down while giving me the opportunity to release the built up frustration, anger, disappointment and fear. 

Feeling better, I walked out of the office refreshed and ready to rock.  In hindsight, I still had a way to go to really accept the situation.

As a problem-solving logical thinking stereotypical male, a significant portion of my waking hours was spent trying to plan out our next steps to get Eileen through this.  My initial research phase had me digging into the disease, symptoms, treatment options, existing medical benefits and overall healthy lifestyle changes.  I think focusing on “fixing” something really kept me together during those first few weeks.  I had a mission, a goal, a target and I was on a roll.  If anyone is interested in the treatment plan I put together, please reach out.

The next few weeks had me take a turn for the worse.  I had good days and bad days, but the bad days were really bad.  I found it easier to shut down than to open up.  Counterproductive and I knew it.  Time to call in my parents for assistance ( it was my wife who asked them to leave their beautiful home in Victoria to come for a visit, because she knows that if anyone can bring me up in life, it is them).  They’re the equivalent of the eagles in the JRR Tolkien books.  When things are REALLY bad and you’ve tried everything else, they swoop in to save the day.  Just the thought of them coming out helped pull me out of my hole. 

I can’t remember the exact date that I truly accepted reality and released my past expectations of the future, but it may have been the day spent at Princess Margaret hospital for Eileen’s contrast MRI scans.  Perhaps it was watching the old woman helping her even older husband get checked in for his MRI scan.  Perhaps it was the time I sat alone in the hospital chapel getting back to my meditation practice.  Doesn't matter what the trigger was, but I felt changed. I still have good days and bad days, but lately there have been a lot more good days. Watching my wife take this tumour head on and seeing how many people she is inspiring along the way makes me so proud of her and want to be strong and supportive for her. I am extremely blessed to be married to such a wonderful and selfless person who is more than anyone can ask for in a partner and a mother to our children. 

I’m with you lover.  Bring it on!"

- Keenan




Here are a few pics of Keenan and I exchanging our vows on our wedding day, He is the wind beneath my wings.

Connections and a Second Opinion

Among all the googling I had done soon after my diagnosis I came across a website called the Spinal Cord Tumor Association. They had a forum on the site where people who have and/or had spinal cord tumors can share their stories and experiences. As I read through people's posts and stories I kept seeing this one paticular Dr.'s name come up over and over again -Dr. George Jallo. I had read that if you send him your report and your MRI scan that he would review it and give you his opinion. So I found his e-mail address and thought it wouldn't hurt to at least to try to reach out to him to see what he would have to say. So I e-mailed him my story along with my report and MRI scan. Within 12 hrs. he responded:

" It is hard to comment without seeing the contrast study. It appears to be a benign tumor with a larger cyst. I would favor surgery as well, as the cyst will most likely grow over time. 

If you send a copy of the contrast MRI I would be happy to review"

George

George Jallo

Division of Pediatric Neurosurgery

Johns Hopkins Hospital

600 N Wolfe Street, Phipps 556

Baltimore, Maryland 21287

gjallo1@jhmi.edu

(I included Dr. Jallo's information for those of you who also have a SCT or Ependymoma of the brain which has not yet been treated. Definitely consider sending your information to him for a second opinion. Note: his information is on many websites, so I am not publicizing his personal information, it is out there on the web and easy to find.)

I couldn't believe he responded to me so quickly (I can't even respond to my e-mails that quickly). This guy is one of the top Neurosurgeons in the states, I can only imagine how busy he is, so for him to respond to me so fast was truly amazing. His answer was nothing I didn't already know, but it was comforting, for lack of a better word, to know that he was also suggesting surgery. 

In the meantime, people were reaching out to my husband at work and making connections. A connection to Visualase was made through one of his co-workers. Visualase is a new age MRI guided laser technology that can destroy tumors mostly in the brain without having to do a major invasive surgery. http://www.visualaseinc.com/. My case was sent to the neurosurgeons there to see if anything could be done for me using their technology. Unfortunately a Visualase procedure on a tumor within the spinal cord contained within the dura has some potential challenges due to the release of heat and swelling within the membrane.

Another connection through my husband's work was made to a company in the states called PinnacleCare, which is a private health advisory company. This company will give you access to the finest doctors, hospitals, medical institutions and specialists in the world that are best suited for your case. After discussing my case, PinnacleCare came back with the best surgeons in the states that would be the best recommend to preform my surgery, and since we live in Canada we asked them if they could do some research on the Neurosurgeon that is currently working with my case - all great reviews on him as well, so that's a plus! 

After telling my husband that I got in contact with the Dr. at Johns Hopkins hospital, he remembered that he had an old friend who is a Dr. at that very same hospital. He immediately reached out to him, asking him if he could somehow get my report in front of the eyes of the Neurologists there. So hubby's old friend pulled some strings and has a team of Neurologists lined up ready to review my case once I have my contrast MRI done (April 24th), and one of the team members just so happens to be Dr. George Jallo. 

I am so very grateful for all the people who have helped to make sure I will be getting the best possible care during this challenging time.

" It's not what you know, it's who you know".  I am so truly blessed to know so many loving and caring individuals who want nothing but the best for me.

I leave you now with some words from Dr. George Jallo himself, discussing some facts on Spinal Cord Tumors. 

 https://www.youtube.com/watch?v=iZf8XCcJsLc

-Eileen

"Google it"

Contrary to the advice from my friends and family, I Dr. Googled.  (Dr. Google: term for using google as a medical resource ... usually resulting in incorrect self diagnosis and unnecessary anxiety.)  After finding out I had an Ependymoma I probably stayed up till at least midnight researching this type of tumor.
Majority of the sites repeated themselves, and this is what most of them said:

• a rare type of primary brain ( children) or spinal (adults) cord tumor  that starts in the Central Nervous System. 
• much more rare than brain tumours
• most common symptom is generalized  back pain and neck pain
• there are three locations of ependymomas -
• extradural (55%). - between the vertebrae and the spinal cord (risky). 
• intradural-extramedullary(40%)  - within the outer layers of the spinal cord but not inside it (high risk)  and
• intramedullary (5%) - inside the spinal cord (very high risk).
• most people aren't diagnosed until they start to lose motor control (an interesting fact that I came across a few times was that people with it high in their cervical spine are usually first diagnosed with carpel tunnel syndrome - I've notice from time to time that I will get pains in my left wrist, but  when it (i.e the pain) does happen I have always blamed it on the fact that I am left handed)
• details of the surgical procedure ... you can even watch it on YouTube - but it is not for the weak of stomach so don't say I didn't warn you. 

I went on to read that these Ependymoma tumors are the most common type of brain tumor in children. About one-third of pediatric brain tumors are diagnosed in children under the age of three. 

That hit me in the soft spot- HARD! As most of you know I have four children, I could not even begin to imagine any of my children having any serious medical disease, let alone a brain tumor, my eyes well up just thinking about it. For the record an Ependymoma is not genetic, so the chance of  any of my chldren having this tumor is extremely slim. If anyone in our family was meant to get this disease  I am glad It was me and not one of them. I am sure parents of the helpless children who fall victim to Ependymoma's probably wish they could have the tumor instead of their sweet angel child. 

I went on to discover the CERN Foundation ( Collaberative Ependymoma research network), A network dedicated to nothing but the research and awareness of Ependymoma's. 

As I navigated my way around their page I learned that there will be an International Ependymoma Awareness day on April 10th 2014. 

According to their website, the “CERN Foundation will commemorate Ependymoma Awareness Day with a mass butterfly release that will take place during the semi-annual CERN investigator meeting on April 10, 2014…The butterfly release will be streamed on the internet so that supporters around the world can participate and share in this event “.

I was in awe when I discovered that the symbol for an Ependymoma was a butterfly, I am pretty sure I even started to cry when I found out. And this is why:

 I have been planning on getting a butterfly tattoo for quite some time now, but wanted to wait until I was done having children. To me the symbolic meaning is : the purpose of  the life of every butterfly is to set everything that was once known aside and to embrace an entire new way of being. 

If this isn't a sign for me to have faith, than I don't know what is!?

This is the tattoo that I have always wanted, and will most definitely be getting once this journey is over, especially now that it has even more significance and meaning behind it. 

So of course I went ahead and I bought a butterfly which will be released by people from all across the globe that have been affected by an Ependymoma. I will most definitely be watching the release online, and so should you! 

For more information on where you can purchase your butterfly visit the CERN website. 

https://cern-foundation.org/?page_id=4882

Hopefully this video will make you want to buy a butterfly and support ependymoma research. https://www.youtube.com/watch?v=Wnkz5H3jrhY#t=61

I hope from this day forward whenever you see a butterfly, you think of me and my family, and all the other families that are and will be affected by an Ependymoma.

-Eileen