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.

April 24 2014

In the last two weeks I haven't had much to blog about; life with four children is quite busy and usually by the end of the day I'm ready to flop on the couch and relax. I am so glad to have my children to keep me occupied during this waiting game, they keep me so busy that there have been days where the thought of my tumor hasn't even cross my mind. I haven't had any major or new symptoms since finding out about the tumor, in fact, I think some of the remedies that I've been taking just might be helping with any minor symptoms that I do have.

April 24 2014 - it is the day that you will celebrate a loved ones birthday or perhaps your own birthday. It is the day that a new baby will come into this world. It is the day that someone will be diagnosed with cancer. It is the day that someone will lose their life. It is the day that a baby laughs for the first time. It is the day that someone somewhere has major surgery. It is the day where you will continue to take care of someone who is fighting their own battle. It is the day when a complete stranger smiles at you which in turn 'makes your day'. It is the day that your sweet child says "I love you" for the first time. It is the day that some of you will take for granted, you'll wake up, go to work, go to school, take care of your kids, drink a coffee, stress over something silly, get upset at a loved one for reasons that you won't remember in a week from now, by mid-day you'll wish the day was over.  For many of you, April 24 2014, will just be... any. other. day.

April 24 2014 - it is the day that I will go for my contrast MRI. It is the day that I have been waiting two months for and dreading it at the exact same time. It is the day that I will most likely re-live the emotions that I felt when I initially found out about my Spinal Cord Tumor (SCT). It is the day that will determine if I need life altering surgery within the next week, month, six months, or perhaps even year. It is the day I will travel to Princess Margaret Hospital, and at 4:30pm will be put into a  huge machine that looks like this ...

I will have an IV put into me. Once a few images have been taken, I will then have contrast (dye) released into my veins and have some more images done, this will enhance the MRI scan images to give the surgeons a better idea of what my tumor looks like. Like most things medical related the 'contrast' comes with risks and side effects :  

MRI Contrast Side Effects

Though MRI contrast (gadolinium) is safer than the CT contrast, there are still some risks associated with the injection. The most common side effects include:

• Allergic reaction
• Flushing/redness
• Hives
• Blood clots
• Dizziness
• Shortness of breath 

. . . Okay then. 

April 24 2014 : It is the day that I will be grateful that I have supportive friends, family and even complete strangers sending love my way. It is the day that I will be grateful for modern technology. It is the day that I will be thankful that I live in Canada and that we have such an amazing health care system. It is the day that I will be strong for those who are weak. And it is the day that I will take another step on my journey with a SCT. 


On April 28th I will call into my surgeons office. With me on hold, the receptionist will ask the doctor (who will have my scans in front of him) if he needs to see me right away. From there we will discuss what the next steps for me will be.


So on April 24 2014, I ask you to be grateful, be grateful for your health, your home, your happiness, your friends, and your family. Be grateful for April 24th 2014, because for most of you, it will just be. . . any. other. day.


-Eileen

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

" It smells like health" and the Naturopath

Coincidentally enough or because all things align at the appropriate time, about a week after my diagnosis a co-worker of my husbands came up to him and started telling him about a farmer in Stouffville ( the town I'm from which is not too far from Toronto) who grows wheatgrass, his co-worker had no idea what was going on with me, as my husband still hadn't told many people at his work. My husband had no idea what wheatgrass was and didn't know anything about its benefits. He did some research and thought "wow, this is exactly what my wife needs right now". For those of you who don't know anything about wheatgrass ( don't worry I didn't either) here is a link to all the amazing benefits it has to offer . . .

http://hippocratesinst.org/wheatgrass/benefits-of-wheatgrass ,

 and here is another link to the farm where we buy our wheatgrass -

http://www.dynamicgreens.com/.

I drink wheatgrass everyday now, probably 3-5 times a day. The main selling point that caught my attention was that it is known to shrink tumors and fight cancer cells. If by some miracle my tumor shrinks, I'm giving credit to the wheatgrass, and to all of those who have been praying for me. Wheatgrass is AMAZING! The first time I tried it, it honestly tasted like someone mowed the lawn in my mouth, so if you like the smell of fresh cut grass then this drink is for you. After a few days of drinking this stuff, I was feeling great, I had more energy, wasn't so tired, had an overall sense of well-being. My body actually craves it now and I love the taste of it. You know that 'healthy feeling' you get when you're eating vegetables or a nice fresh salad, it's like that feeling, but way better! I love it and recommend it to everyone. Even if it doesn't shrink my tumor, it is helping my body prep for my surgery and recovery. We had some friends over this past weekend and one of our friends smelled my wheatgrass juice and he said " it smells like health", which is the perfect description for it, I swear it's the 'fountain of youth' in a grass! Hubby and I are thinking of growing some of our own. I'll keep you all posted on how that goes.

So I started to see a Naturopath. I have mixed feeling about this Dr. My first visit was amazing, she really seemed to be in-tuned with me, very empathetic about what was going on, and very caring overall My session with her was pretty straight forward. I had to answer a ton of questions, one of which included what my goal was in regards to my tumor, I told her my ultimate goal would be for my tumor to shrink and not to have the surgery ( Dream Big right!?). So she recommended me to visualize my tumor shrinking, she told me to continue to drink the wheatgrass and she gave me a homeopathic remedy called Lymphadiaral which is supposed to help with the lymphatic system, she's hoping that this could perhaps naturally drain the cysts that are above and below the tumor. I'm not sure if this remedy is working on the cysts but I have had swollen lymph nodes for quite some time now and the swelling has definitely gone down - so that's a big plus! I left my first session feeling great and with high hopes! I did my homework and filled out my food journal that she recommended for an entire week and then went back for a follow-up. When I went back for my follow up visit I didn't have the same vibe that I got the first time around - My second visit with the Dr. felt as if she was just looking for anything else that could be wrong with me, nothing that had to do with my tumor. I felt like she was just trying to sell me all of her products and since I was in such a vulnerable state of mind that I would buy anything that she recommended to me. "even if it doesn't help, it won't hurt to try it" is pretty much what she was saying about every remedy that she laid out on the table. She even tried to tell me that my husband and I can't afford to get sick so she was sticking another remedy in my face trying to sell that on me. For those of you who know me, know that I hardly ever get sick, my whole family can have the stomach flu and I will not get it, I just don't get sick - I have no time for that. Anyways, once I started denying the products that she was trying to sell me, I could sense that our bond was dwindling. I have one more appointment with this lady at the end of the month so I'll give it another go, but if I feel like I'm just being taken advantage of then I'll probably stop going.
Anyways, this was just kind of a rant post with no real emotion put into it. I really just wanted to rant and rave about wheatgrass and how I think you should all try it!

Keep in mind that April 10th is Ependymoma Awareness Day, please help raise awareness.

-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

The Prognosis

A whole weekend had passed since I found out that I had a tumor. I spent majority of that weekend, wondering what was going on, what my outcome was going to be, and even though people told me not to . . . I "googled". My family got together at my oldest sister's house on the Sunday, and over a cup of tea we had a little "pow-wow" where we gathered up information about my tumor and made a list of questions that we had for the Neurosurgeon. We also got in contact with a few of our Dr. friends and asked them if they could recommend any questions or concerns that we should bring up when we saw the Surgeon.

On Monday February 24th, dear husband and I headed to Toronto Western Hospital, which is one of the world's leading Hospitals in Neuroscience - so grateful to have such a top ranking hospital in my own 'backyard'. As we walked into the hospital, there were a ton of people in the main foyer, and a lot of these people were old, I was probably one of the youngest people in there. Many people were in wheel chairs, had walkers, canes, etc. I'm not old, I'm young, and healthy, and can walk perfectly fine, I am not supposed to be here - was my first initial thought. Across the foyer there was a little Sushi Bar, and I told Keenan that no mater what, I wanted to eat some rolls before we left the Hospital. We went up to the 4th floor where I was to register for my appointment. As Keenan and I sat down in the waiting area, there were patients all around waiting to be seen. I'm not sure what these other patients appointments were for, but I take it a spinal cord tumor trumps all because I was called in soon after we sat down.
Keenan and I waited and waited and waited some more in the examining room for a good 20-30 minutes until finally a resident came in to let us know that the Dr. was almost finished up in surgery. I'm not sure if you have caught on or not but I have yet to mention any of my Dr.'s names. I am not quite sure what the 'rules' of blogging are and disclosing peoples names without their permission, so until I get my Dr.s' approval to revel their identity, I am going to continue to keep their names anonymous.
While Dr. "Top Dog" was still in surgery, the resident got my back-story and started doing some tests on me. She took a pin and started pricking my body, my arms, thighs, legs, and feet to see if I could feel it - um ya, you are pricking me with a pin, of course I could feel it! I did however notice that the sensation of the pricks in the left side of my body weren't as sharp as the right. she continued to do some more testing on me including the Hoffman test - the same one that was done by the previous Dr. but this time I didn't react to it at all ( that's a really good thing). Once she was done poking at me and scraping the bottoms of my feet with the top of her pen (yes she did that too), she asked me to come out into the hallway to go for a walk. Unless you are on the runway on the set of America's next top model I never knew that the simple act of walking could feel so intimidating. She asked me to walk back and forth in the hallway, I had to walk backwards and sides ways, and then she asked me to walk as if I was walking on a tight rope with one foot directly in front of the other ( the heel of my front foot had to be touching the tip of my big toe of my back foot). I did that with flying colours, but then in the midst of my walking on a type rope, without any warning she said "Okay keep walking but now close your eyes'", so I did . . . yup, I completely lost my balance and had to reach out and catch myself on the wall beside me. After you are done reading this, I want you to go try it - it's not as easy as it sounds. Another symptom of a SCT is that it can throw off your balance, so I guess it's starting to slowly take effect on me -well at least it is while I'm on a tight rope with my eyes closed ;).
After all my tests were done and we waited a little longer the Neurosurgeon finally came in. Knowing how Amazingly smart and "God-like" this man was, I felt extremely nervous to talk to him. But he too had a pretty calm presence to him.
This guy went straight to the hardcore facts, explaining what the tumor was, where it was located, what the nerves do that are located in that area, and what he was going to do about it. I was hoping he would  say we could do a 'wait and watch' approach, but  he didn't, he said the words that I had a feeling that I was going to hear -"SURGERY". "Your tumor will need to be surgically removed, if left to grow in your spinal cord there will be a 99% chance that you will eventually become paralyzed" is what he told us. He briefly went over all of the risks that come with the surgery ( as all doctors have to do), one of the risks included was that there is a 5% chance that I can be completely paralyzed from the neck down and be dependent on a ventilator. He quickly covered what to expect once the surgery is over and what will happen in the weeks to follow. Once we get my surgery date set, we will have a pre-op meeting where I will get in depth details about the surgery itself and the outcome. He said the "good thing" about these tumors is that they are very slow growing, so we have time on our hands. That being said he ordered me another MRI, which is scheduled for April 24th. From there we will see if there has been any changes to the Tumor ( hopefully for the better) and that will determine when my surgery will be. In total I think the Doc was with us for 10-15 minutes and then just like that he was off to save someone's life. When he walked out that door I felt extremely grateful for this man, he was so confident about everything he explained to us, he didn't think twice that he couldn't perform the surgery, he was so sure about everything! Keenan and I left the 4th floor both a little taken back by all the information that was just dumped onto our shoulders. I'm not sure what was going through Keenan's mind, but all I wanted to do was cry, I needed to break down, I was so strong for the entire weekend only having little mini crying sessions here and there, but I was ready, I needed to get it all out. But I didn't, I couldn't, I didn't want to cry in the hospital, so I stayed strong for a little while longer. Keenan asked me if I just wanted to go home, but I didn't yet, I was hungry and I really wanted that Sushi. So the both of us sat down. I held back tears, Keenan held my hand and we ate our sushi in silence only exchanging a few words to each other, knowing that if we said too much it would bring on the tears.

That night when everyone in the house was tucked into bed. I curled up into my husbands arms and finally broke down, I broke down in the way that I needed to break down. I cried in a way that I've never cried before. I was mourning my life. Life as I knew it would be forever changed. Even if I make a full recovery ( which I completely intend to do) I will never have the same life again, it was like a little part of me had died. I needed that time to feel sorry for myself, to be mad, sad, and upset.
I needed to ask why this was happening to me - I think the only person who can answer that question is me - I will create the answer to the reason why out of a million people I was the one who was diagnosed with this Tumor. The answer hasn't come to me yet, but I am slowly answering it as the days go on. Since discovering I had a SCT I have not taken one single day for granted, I appreciate my husband and all he does for me and my children that much more than I already had, and I tell him and show him how much I love and appreciate him everyday. I have taken charge of my health, eating healthier, taking vitamins, homeopathic remedies, and started yoga. I've become closer to cousins, aunts and uncles. I have an even stronger bond with my friends. Every opportunity I can, I tell my loved ones that I love them. I continue to be blessed by the love and support from my parents, siblings, and in-laws everyday. I hug my children more, kiss them more, and tell them and show them how much they are loved . Every night before I put my youngest to sleep, I say "thank you for saving mommy's life". Above all I appreciate life and all the wonderful things it has to offer more so than I ever have before.
 In an odd way, I believe I have been given a rare gift, the gift that something serious has happened to me but with no significant risks of dying. I hope I can use this gift to make a small impact on peoples lives.
I have the power ... "What this power is I cannot say; all I know is that it exists" - Alexander Graham Bell. 

"Somebody call 911, Shawty fire burning on the dance floor, woah" (post #3)

So how does one discover that they have a spinal cord tumor? In many cases people with spinal cord tumors can go undiagnosed for years. They can also be misdiagnosed with other conditions which are caused by minor symptoms from the tumor. When someone finally discovers that they have a spinal cord tumor it is usually because their symptoms have become pretty sever - pins and needles in their extremities, numbness in hands and feet, lose of balance, inability to walk,  and a hard time breathing -just to name a few.
However, that isn't the case for me. Mine was discovered by my youngest child Desmond  (1.5 yrs old at the time), who I now like to call my earth Angel.

Side note: Soon after I had my daughter Michaela ( just over 6 months after she was born) I became pregnant with Desmond; because there is only a 5% chance of becoming pregnant before your menstrual cycle returns after having a newborn ( sorry tmi, I know, but it makes for a good story), and the fact that I was breastfeeding my daughter around the clock ( which can also cause your menstrual cycle to stop), I knew that this baby growing inside me was a true miracle and was definitely meant to be here. And now we know why - to save my life.  I guess in a way I can say I gave birth to my guardian angel.

Let me take you back to mid Nov. of 2013;  It was a week day and I had just gotten my older boys off to school, I was most likely still in my pajamas and had just finished making myself a cup of coffee. (Side note: that morning I couldn't find my hair elastic which usually sits on my bedside table waiting for me to put my hair up.) So with my thick mane of hair that sits just below my shoulders I plopped  onto the couch where my 1.5 year old son and almost 3 yr old daughter were cuddling watching TVO kids. Of course as soon as I sit down both my littles decide to use my lap as a trampoline, I put my precious coffee out of harms way in hopes that I can drink it sometime in the near future before it gets too cold. I go back to being a human trampoline, my daughter is soon distracted by the theme song of her favorite show "Paw Patrol" and assumes her position on the couch. Mr. Monkey on the other hand is climbing behind me on the couch being quite the little daredevil, he unexpectedly loses his balance and falls onto the couch, as he was falling he grabs hold of my hair to try to catch himself and to brace his fall, which in turn jolts my neck to the side causing a HUGE shock up my spine and into my head. A sensation of warmth and pins and needles rush to my face, I see stars floating before my eyes, I feel as though I am about to vomit. And the pain in my neck - oh the pain in my neck - it was excruciating, almost like a burning sensation! I have a pretty high tolerance for pain and this pain was right up there with natural childbirth, in fact, the yelling, moaning and crying I was doing could have easily been mistaken for someone pushing out an infant. The thought of calling 911 quickly crossed my mind, thinking that if I passed out at least an ambulance would be on its way and my kids would be safe. My little ones were so concerned and wanted to make sure I was okay, they were hugging and kissing me, trying to console me through my extreme discomfort. My natural fight or flight instinct kicked in and I could no longer stand still, all of a sudden I just started pacing around the house not knowing what to do next, clutching my neck the entire time. I ran to the toilet and threw-up, my head throbbing at this point. I grabbed my phone and went to lie down on the couch, forcing myself to calm down. I took some deep breaths and slowly the pain was starting to subside. I rested for about 5 minutes and the pain was disappearing even more, leaving me with  just a stiff neck, tingling in my right arm and a weird sensation on a patch of my scalp - like someone was plucking out individual hairs on my head. I called my oldest sister  and told her what had happened. I said I was going to call my husband because I thought I should probably go to the hospital to get checked out. I called my hubby and told him that I needed him to come home to take me to the ER. In about 45 mins my husband was home. What happened in the time that it took him to get home is all a blur to me, all I remember is being able to change out of my pj's, I think I even managed to get the kids dressed, got a diaper bag packed as well,  and somewhere in there I must have called my mom to let her know what happened and that we were dropping off the little ones at her house.

 Once at the hospital I had to explain my story to a few nurses and then finally to the doctor in triage. You have to admit it does sounds kind of ridiculous when a mother comes into the ER complaining of neck pain because her toddler pulled her hair. Normally you would think that an ER doctor may just give you some T3's, tell you to ice your neck and send you on your way - which is kind of what I was expecting. So I had to make sure that the Dr. knew exactly how severe my pain was and that on a scale from 1-10, 10 being the most painful that my discomfort was indeed a pretty strong 8-9, and initially started off as a 10. This doctor was amazing and was genuinely concerned for me. He ordered me a CT scan, started an IV line pumping me with fluids and a pain med (which didn't really help that much). The CT scan came back clear. He wrote me out a prescription for T3's and referred me to a neurologist who would preform an EMG test on me.

A week later when I went to see the neurologist, any major pain that I had from the initial injury was pretty much gone. An EMG test was done to see if I had any herniated discs and/or pinched nerves. For those of you who don't know what an EMG is, it is where they stick tiny little needles into your skin and send little shock waves to your nerves - think Dr. Ho. My EMG test was normal, but I still felt like something just wasn't right. For about 7 years I have been suffering from back pain and pain in my left shoulder blade and just recently some of the pain started radiating through my left arm. I asked the Dr. to check out my arm, and she did a manual test where she pressed on a nerve in my elbow and gently rubbed the tip of my pinky finger - my finger felt very tingly and a bit numb. She diagnosed me with a minor pinched nerve in my elbow - but we would later discover that the numbness was not due to a pinch nerve, or maybe it was, but a pinched nerve is now the least of my concerns. After reading over my case the head Neurologist decided that he wanted to send me for some MRI's just to be safe because he didn't like that I had tingling sensations in my face upon the initial injury. He reassured me that it was for a safety precaution and because I am a young mother he just wanted to rule anything else out, his exact words were, " I am sure everything will come back clear, and you will be perfectly fine". My MRI was booked for February 2014. So for the next three months I went on living my life as I normally did, with any pain from the incident completely gone.

 Fast Forward to Feb. 18 2014 the day of my MRI. I get placed into this giant tube that is extremely loud, I  was little nervous but the whole MRI experience wasn't all that bad. I will definitely need to do a blog dedicated to nothing but MRI's.
Two days later I get the call, a call that no one ever deserves to get, and I hope that none of you will ever get this call in the future, but unfortunately I don't think that will be the case. At least one of you will get a similar call to the one  that I got at some point in your lifetime. So if and when you do get this call, think of me, hopefully I can bring you some comfort. "We need you to come in as soon as possible to discuss your MRI results" was what the Dr. said to me. That. Was. It.  That is all he was allowed to say over the phone. As I clicked 'End' on my phone tears streamed down my face, about a dozen worst case scenarios played in my head, my life was flashing before my eyes, I asked  myself "am I going to die?". I called my husband at work sobbing and trying my hardest to repeat to him what the doctor had just told me. My husband and I agreed to meet at my parents house and would go together with my mom to the hospital. I called my oldest sister, who is someone I look up to and admire dearly - whenever my siblings and I have problems she is usually the first person we call. She calmed me down a bit and gave me some  'good' scenarios that may be the reason why the Dr. called me in. I also called my youngest sister who is a nurse, she also reassured me that everything was going to be OK and that there was probably nothing too serious to worry about ( even though I didn't believe her, it helped to hear those words). She came over and watched the kids.

As I was driving to the hospital I could feel myself shaking, repeating in my head that when you get a call from the doctor to come in right away, you know something is wrong, something is really, really wrong.
My husband was already at my parents house when I got there, we grabbed my mom and headed over to the hospital. We waited for what felt like forever, but I think it was only about 10 minutes before I was called in. The doctors did another EMG test on me, I'm not sure why exactly, but I didn't ask - they know what they're doing. My husband and I were brought into an office ( my mom was waiting out in the waiting room)  where we were asked to wait, we were told that the Neurologist would be with us soon to discuss the MRI results. I was feeling very nervous at this point but extremely grateful that my husband was able to get off of work to come and be with me, and that I had my mom just waiting outside for me.
The Dr. - a very nice looking Italian man, very well groomed with some very expensive clothing on came into the office, he was the doctor who ordered the MRI. He made some quick small talk, asked me how I was doing and if I had any more pain, I told him that all the pain from the injury with my son was gone. He began his speech with reassurance that my son did not cause any damage to my neck, " if anything the accident was a blessing in disguise" is what he said.  "We found something on your MRI scan". A "mass" was discovered inside my spinal cord, though I think he probably knew what it was, he said  he wasn't exactly sure and that he could not take on my case. He set up an appointment for me to go see a neurosurgeon the very next day. If I was to get the appointment through the health care system I would have had to wait about 7 months to be seen. But because I had a kind and compassionate Doctor looking out for me, he called in a favour and was able to get me seen the very next day. Everything that happened when my son pulled my hair made a little bit more sense, whatever this "mass' was in my spinal cord  must have  had a bad reaction  to the neck jolt, compressing my nerves, causing all of the pain symptoms.

Leaving the hospital  that day I wasn't too sure what to make of the news of this "mass" in my spinal cord. A "mass" could be anything! On top of that we are dealing with the spinal cord which is pretty serious in itself. Though I didn't really fell like I knew what was going on, I was happy to know that I wasn't going to die and like 'they' say -"it could always be worse".

 I would find out the very next day that the "mass" was indeed a Tumor.


-Eileen

Introducing Me! ( post #1)

This is me.        

I am a 30 year old mother to 4 beautiful children (3 boys and 1 girl). I have been happily married to my husband for almost 5 years now. I come from a loving family of 7 siblings. 

I look pretty normal, healthy, and happy wouldn't you think?

Now take another look at me...

with some uninvited guests.

This  cool dude hipster circled in red and his crew (cysts) took residence inside my spinal cord a couple of years ago and started to grow. How many years ago you ask? I'm not too sure to be exact, but in hindsight about 7 years ago I started having pain/discomfort in my left shoulder blade, which is one of the symptoms that this little bugger creates. The pain, along with some other  (new and old) minor symptoms have been with me on and off ever since. 

"It's not a Toomah" - well actually yes it is, known to the medical world as a Intramedullary Ependymoma, a Intrama-Ependa-what-a? Yup say that one 5 times fast! To me he is a big nuisance who now that I know about is interfering with my life - sorry hipster, if you aren't going to shrink yourself, and your pals aren't going to naturally drain themselves then you guys have got to go. I know if it were up to you you'd probably grow bigger in my nice cozy warm spinal cord eventually leaving me to be paralyzed. Or perhaps you'd make your way further up into my brain and call that your new residence. But, since we caught you when we did, you no longer have the opportunity to grow because you are going to be evicted. Unfortunately he won't go easily, HOURS of  invasive surgery is the only way to get him out!

So to all of my friends and family ( friends of friends, friends of family, and complete strangers who are really just friends I haven't met yet) join me for the next few weeks/months as I prep myself mentally and physically for a journey that I never thought I would ever have to embark on.