Heather's Reality

Bully- His Cancer Story

The story of a bully (Cancer):

In January of 2012, after having just submitting a post on Facebook about looking forward to what was to be in store for my family, my son who was 4 at the time woke up having difficulty peeing.  By the time I realized something serious was going on, it had been hours.  Unable to fully express the level of his discomfort, I had no idea of the level.  Eventually I made an urgent appointment with his doctor on this Saturday afternoon and we ended up at the nearby hospital with the thought that perhaps an appendicitis was the cause.

An ultrasound revealed that his bladder was at max capacity and so catheter was used to help with relief.  With no real information, that we were made aware of at lease, we were transported by ambulance to a bigger hospital a half hour away!  After a multitude of tests, and visits from oncologists (the mere sound of this put me in a panic)!  On Friday 13th, 2012 my 4-year-old baby boy was diagnosed with a rare childhood cancer called rhabdomyosarcoma.  What immediately followed, was the immediate start of chemo, many nights at the hospital, the insert of:

“A portacath is an implanted venous access device for patients who need frequent or continuous administration of chemotherapy.”

After weeks of chemo at the hospital a half hour away, my son and I eventually temporarily relocated two hours away from home, to Boston, MA for 6 weeks, so that he could get daily treatments of a specialized radiation called proton beam radiation (beams target the very specific location so as to damage fewer healthy cells).

Thankful for my village of supporters, my daughter who was 11 at the time, had a steady support of people who did their best to normalize her life during our time away.

Soon after my son turned 5, we were ready to go home.  Contrary to what people (myself included) may have thought, for me the return was bitter sweet.  While in Boston, we stayed in an amazing place called Christopher’s Haven, an organization that provides a safe space stay,support, and a close-knit community of other families living a similar nightmare.  Please read more about Christopher’s Haven by clicking the link above.

I knew that no one back home could quite understand what I was going through and that thought was almost too much to bear.  Christoper’s Haven which was conveniently located directly across the street from Mass General Hospital made early morning proton treatment appointments easier to navigate.  Our goodbye to the strangers turned family were some of the toughest I’ve had yet.

As I think about my now healthy 11-year-old who is full of life and energy, I never take for granted that his story, our story is among those that I consider to be a miracle…. a miracle that unfolded right before my eyes.

Sitting here at 2:29am, it is dawning on me that this is the first time I’ve put this story on paper, and after all these years the waves of tears are still splashing right behind the floodgate doors. As poetry is a source of therapy for me, On October 10, 2012, I wrote this poem:

Bully

You are the definition of a bully and you terrorize your prey.
Not happy with your current list so you add new people every day.

You are like a monster; don’t care whose lives you wreck.
Your missions are so secretive most people don’t suspect.

You are oh so evil your fight is so unfair
Leaving all your victims with feelings of despair.

You are very sneaky breaking all the rules.
Even weapons can’t totally rid you because you hide, pretend and fool.

You are a serious villain unleashing with your entire arsenal.
Picking on so many you chose my son you made shit personal.

You are such a coward like the lion on the Oz.
You think you have the power but not more so than our God.

You are one of the greatest murder mysteries even you’ll one day be solved.
I pray you don’t leave too many more casualties before you are dissolved.

You… are… Cancer…

Even after all of these years, this topic has a way of rattling me to the core.  Despite the advice I have given myself many times, I have not sought out the help of a therapist to work through my emotions, and like I have felt the need to do in order remain the  focused mother and fully present mother that I must be, I have always held the depths of emotions captive just underneath the surface.

While the poem was the beginning, and this post can be considered a middle, in the end, my plan (which I have recently begun working on), is to write a book about Sabir’s (our) cancer story.  This time as I write and look back through all of the documents, cards, letters, notes from hospitals and doctors, detailed calendars etc. that I’ve kept locked away, I will unlock the emotions that I’ve not allowed myself to access and will finally give myself permission to have a good cry.

 

 

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39 thoughts on “Bully- His Cancer Story

  1. Such a difficult subject for a lot of people to talk about so it’s great to see you being so open and honest about it. I’ve lost a friend to cancer and seen friends come through the battle and it’s such an awful experience for anyone to experience, and the family involved, but so pleased that your son came out the other side

    1. Sayanti,

      Thank you for your kind words! Courage and determination seemed easy enough because that was what we had! If you are a parent, I’m sure you know that you would do anything for your child/children. I never knew that I had as much courage as I did, but…. I did!

      Thank you for supporting my blog by reading an responding to the Bullying post!

      Heather

    1. Thank you for reading and for commenting LavndaMichelle,

      I’m glad you can’t imagine it, because it is nothing any parent ever does. Sticking through it was the only option, and is the only one I would choose even if there were more options. He is very brave. My hero!

      Thanks again for reading and commenting.

      Heather

  2. Thank you for sharing your story. I got emotional after reading this, and as a mother or parents, I know how difficult it would have been. Kudos to your courage and strength. Glad to know that your son is healthy now. Love and best wishes to you guys.

    1. Thank you for reading.

      In a moment like this, it becomes clear that courage and strength was all I could muster. He is happy and healthy and for that , I am more grateful than can be expressed with words.

      Thank you for the best wishes!

      Heather

    1. Olga,

      Thank you for reading “Bully” It is my way to release the sea of emotions that swish in waiting just underneath the surface.

      Thanks you again for reading the story, and for taking the time to acknowledge its impact.

      Heather

    1. Marie,

      Thank you for reading. It was truly a journey and one I do not wish on any parent. Our support system was more than I could have ever dreamed, an every single person who played even the smallest role, helped us get through. My sweet boy…….

      Tanks again for reading his story.. our story…

      Heather

  3. Thank you so much for sharing your story. You were strong for your son and got him through the hardest thing he’ll ever have to deal with (hopefully).

    1. Heather (hey we have the same name! lololol).

      It is interesting to be called strong. In the moment, It felt more like a power greater than me took over, so that I could move though the seconds, moments, minutes, hours, an days caring for both Sabir and my daughter, while being fully present and focused. I guess we never know how strong we are until we are tested, an I was surely tested. One of the best things I think I id, was gifted Sabir with not knowing exactly what it was that he was dealing with. I needed him to be strong, to not be afraid, to be courageous and to fight!

      As the sears begin streaming, I am reminded once again, that the emotions are always… just underneath the surface…

      Thank you for reading hi story. Our story.

      Heather

  4. This is such an emotional post. I thank God your baby is now healthy and thriving. I just love the Bully poem, so much wisdom and soul. You are blessed!

    1. Kamapala,

      Thank you for reading Sabir’s (our story). We are blessed indeed. I never lose sight of the fact that we are among the lucky ones who had a happy ending. Poetry is one of the few ways that I know to express my feelings completely, honestly, and openly.

      Thank you for your support!

      Heather

  5. Thank you so much for sharing your story. I’m so happy to hear that your son is healthy and you can put that experience behind you. It sounds like your experience with Christopher’s Haven helped you go through it. We support the Ronald McDonald House near my home since they do a great job in helping as well.

    1. Thank you for reading the post. It was such an unbelievably scary time but he/we made it through. Organizations like Christopher’s Haven and the Ronald McDonald house make all the difference for families going though unimaginable situations. I am glad to hear that you support them. You are indirectly/directly playing a role in helping children and families create a needed and lasting support system!

  6. First, I thank God that your son is living to share in this testimony with you. Your whole family is extremely strong & courageous to survive this, and allow your testimony to uplift yourself & others.

    You are blessed & your son is a blessing. There are no ifs, ands, or buts about it.

    1. Amber,

      You are sooo right that his story is testimony of healing, of prayer, of strength, of courage, of love, of support. The blessing that he is is always on my mind! Amen.

      Thank you for reading and for your support!

      Heather

  7. Thank you for sharing your story. I’m so happy that your family fought and overcame this. What a blessing to be able to share this story. I really liked your poem.

    1. Thank you Brittany. We are blessed for sure! I love to write poetry and sometimes it just kind of writes its self and I just write it down. Please feel free to check out some of my others under the poetry tab!

      Thank you for reading!

      Heather

  8. I feel devastated when a child would go through a tough situation. A child should not experience such unpleasant situation. You are a good mother. I should say thank you for being with your son when he needed you most

    1. Thee is no need to say thank you. As his mother, I would not have been anyplace else. He is my heat beating out of my chest! Thank you for reading!

    1. Thank you for reading and commenting Dominique. This is such a personal story and telling it allows me to move through the emotions that will forever remain near the surface. I too cannot wait until the greed that keeps potential cures at bay, are no more, so that this bully can be put to rest!

      Have a great Sunday!

      Heather

    1. Thank you for reading Pradnya.

      It was not easy putting it down. I am in the middle of writing a book which has been even more intense! Reviewing all of the documents and notes has been very hard….

  9. Writing things down and getting it on paper or computer can be so therapeutic. This is a great way to help yourself through those emotions!

    1. Jessica, you are spot on with that. I am in the process of writing a book on my son’s cancer story and was just going through all of the things I kept from day one. Even after all this time, as I read through some of the documentation, I fond myself sobbing as I read about the days leading up to his diagnosis!

      Thank you for reading, and I hope you stick around my blog!

      Heather

    1. Thank you for reading Kristen. Writing our my son’d story is a form of therapy! I hope you stick around and read more of my posts!

  10. I could not imagine having my son go through what your son did. That must have been such a scary time in your life. I don’t know how you did it!

    1. Ally,

      There was no choice but to go through it. You realize the strength that you have when strong is your only choice. It was scary indeed. I hope your son is healthy an happy!

      Thanks for your support!

      Heather

  11. I am so happy to hear that your son is healthy now. I am glad that you had a village to surround you of people who were going through similar experiences. My sister stayed the Ronald McDonald house when my niece was in Toronto at Sick Kids hospital for several heart conditions. Unfortunately we lost her, tomorrow will be 15 years ago to her health condition. But having other families all staying together is definitely a huge support and my sister was able to make life long friends.

    1. Tara,

      I am sorry to hear about your niece… I try to always recognize that our story (Sabir’s story) is one of the happier ones. As you have likely heard from the stories your sister told, the bonds built with other families are unbreakable!

      I am often on the verge of tears when I look at Sabir happy and healthy. I am working on writing a book about our journey and became face to face with all of the notes, articles, images that I’ve saved over time. That was very tough, and so when I see my miracle boy, I am filled with sooo much joy!

      I hope you stick around my blog!

      Have a great rest of your weekend.

      Heather

  12. Thank you so much for sharing this. It’s rare to get to see someone’s heart in a way that leaves them so open, especially about such a tough subject. I think a book would be amazing.

    1. Dana,

      One think that I an constantly reminded of is that even after all this time, the emotions are still just as strong. I imagine they will always be.

      I am actually currently working on a book. Stay tuned….

      Thank you for reading. Please stick around my blog and check out some of the other posts!

      Heather

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