sleeping sickness

First off, I want to take a minute here to thank everyone who has been following this blog, sharing it and giving me amazing, heart-warming, tear inducing, spirit lifting feedback. When I started in February I wasn’t going to share with anyone. I thought I’ll just type away and see what happens. To my complete surprise it’s been really emotional for me, and as in anything in life the unknown can be frightening. To be honest I knew I’d have two regulars (mom & papa – I love you!) so I wasn’t too worried. The comments and messages I’ve received are marvellous. I think you are all amazing, strong, awesome, the list could fill a thousand pages. So I’ll continue as part of my vows to do what makes me happy and enjoy the process, this is part of pushing forward for me.

Last night I went to the park with my son who is seven to play ‘soccer’. What was I thinking? It was cold, windy. Can I just say I love the term polar vortex, it should be a drink you could order in the Caribbean. I think the polar vortex was back last night…come on we need the WARM sun. Anyway, he said ‘I want to go to the park’, ‘my parents never take me anywhere’ – trust me my kids have very full schedules with hockey, competitive soccer, birthday parties, playdates blah blah blah… ‘Daddy you are always texting or sleeping’, ‘mom you are always cooking or cleaning dishes’. I like to state that we do our best as parents, we’re not always perfect but we do our best. Of course he was using guilt tactics to persuade us to do what he wants. I don’t fall easily for them, but I went because in the last couple weeks things have taken a turn with my children. Especially my daughter. I think she might be at an age where reality is starting to click and sink in. Up until now my kids have been going along unaffected by cancer, still too young to truly grasp it. The pendulum is starting to swing.

I’ll explain, people often say to me ‘you are so strong’, ‘you have a great spirit’, ‘you have such a positive attitude’, ‘how do you handle everything?’ The truth is I don’t know. Except it may be because so far I felt my kids weren’t aware. And when people say ‘how are you feeling?’ it’s such a complicated answer I usually say ‘I’m fine’ and then I add ‘truth is I feel ok, but it’s the mental game that is the worst for me right now ‘. I love my husband, my parents, my sister and brother-in-law, my in-laws, my sister & brother in-law, extended family & friends….but they all would be fine if something happened to me. Yes it would be sad. Obviously. Worrying about my kids is what keeps me up at night – there is no greater love. Period. But you know what is interesting?….they are also what gives me the most strength. To be honest, how I keep myself from not completely falling apart whenever my brain opens that big dark door is to immediately slam it shut and move to another thought. Self-preservation tactics.

The thing is it’ll be 8 years that I’ve been a member of the crappy cancer club. You ask why? Remember I said in one of my first post you gotta be cool that I instinctively knew something was wrong inside my sexy breast in September 2013, but I purposely didn’t feel for anything until November (in denial). I will explain, On July 11, 2007 my husband who was 34 years old at the time, went to the emergency room for appendicitis and had an abdominal CT scan. The scan not only revealed he needed an appendectomy but also that he had cancer. After further tests over the next few weeks (bone marrow biopsy, ultra sounds, MRI, chest X-ray, bloodwork) he was diagnosed with stage 3 Non-Hodgkins Lymphoma and Leukemia. More specifically;

  • Small Lymphatic Lymphoma
  • Chronic Lymphocytic Leukemia

This type of cancer is described as slow growing and treatable. However it is not curable. After his treatments (the poison) were completed in March 2008, he went for a stem cell collection of his own newly ‘clean’ blood. This process is similar to giving blood only a much larger quantity is collected. It’s preserved frozen and stored for a possible stem cell transfusion in the future if the cancer returns. The doctors explained it like this ‘it’s not a question of if the cancer will come back, it’s a question of when’. In medical terms they refer to this as the watch and wait approach. We’ve been extremely lucky so far that it hasn’t returned. Amen. Lord have mercy. At the time of his diagnosis my son was 2 months and my daughter was 2 years old.

So you can see why I didn’t run screaming to the emergency when I knew something was wrong in my body. This is when I’ll say… I don’t like pity parties. I don’t like to complain. I like to look at what we have and know that we are lucky and very blessed. So far we have been healthy enough to raise our children and move forward every day. No one knows what the future holds, so I cling to what I have today and that is enough.

13 thoughts on “sleeping sickness

  1. My eyes are filled with tears reading your blog every time you post. Your entire family has gone through so much in the last seven years and your spirit is something to be admired. You bring inspiration and hope to so many people, they say God gives you what he knows you can handle, God chooses his soldiers to help inspire and teach. You do this with bravery, love and bring peace to so many. As horrible as this may sound ( not meant to be in a bad way or wishful way) but he has chosen the right person. My wish for you is that you or your husband never have had to endure and have that poison run through your veins and that your children will watch you grow into your ripe old age of 90 something.

    I am proud to call you my cousin, even if it is by marriage and just think, even in your nineties you’ll have great boobs…lol

    Always look to the brighter side of life, continue to laugh and love the way you do…Love you!!


  2. Hi Simone

    Such thoughtful sharing of deep, powerful emotions & how you manage them. Maman & I are so proud of the person you are, vet forthright & so genuine. Will share further thoughts fro my laptop.

    Please let Remo know that we prayed for him on this day of his first communion. May Jesus accompany him every day of his life.

    We are in Toulon France surrounded by teens in zombie costumes and Japanese cartoon figures.

    He t’aime et t’embrasse xox


  3. Simone, We have been following your and Stefano’s lives mainly via your parents, our dear friends, as long as we have known them (about 30 years). They have provided minimal accounts of both the good and the bad news, even when there was much cause for either bragging or sorrow. I am so glad that your mother told me about your blog, and awed by your undertaking to write about your life. You are making a gift to more people than you will ever know, and all will have you in their thoughts. Thank you!


  4. This one moved me to tears!! I think of you and your husband often and I can only imagine the fears you have when it comes to your kids. You’re a brave, amazing family and you’ve endured way too much already…the future HAS to be brighter for all of you!! xoxo


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