Tag Archives: diagnosisday
5 years today. 5 years ago today we heard those words no parent wants to hear. 5 years ago we met a murderer, and it was attacking our son.
No length of time will soften the hurt. We will forever remember that day, that specific moment. That walk down the bright hospital hallway. The look on the doctors faces. The dread in my heart. The words…. oh those devastating words.
The day of diagnosis will always hang over our heads. The memories. The life changing word. The immediate loss felt.
Some will say 5 years is a long time. A parent who has buried their child will say it’s too long. Time changes very little. It certainly does not heal all wounds.
My heart is very heavy with all the memories flashing in and out of my mind. I wish I could have prevented this. I wish I could have saved you.
today is the first day that changed our lives.
the day I felt a fear I never knew I could feel.
the day I felt helpless.
the day I felt the world was against us.
the day I hated everything and everyone on the planet.
the day I wish I was chosen.
the day that showed the truth of our life.
the day I knew I was going to lose my child.
the day that told us Madox is going to die.
I believe our body is conscious of pains and memories before our brain tells us these flashbacks are coming. I can feel a change in my behaviour, mood and sleep when a hard memory approaches. Marco feels it in himself as well, and we can see it in Valin. We all feel a bit more heavy, quiet, and fatigued. These thoughts are always at the forefront of our minds.
The day Madox was diagnosed is fast approaching. I think about how he was showing mild symptoms we mistook for simple every day things. While skating he complained of feeling tired and didn’t want to skate anymore so we pulled him holding the hockey stick and made a little game out of that. Another sign was he couldn’t turn the door handle on the back door with his left hand (the one that he lost complete control over during his illness) but we dismissed it because that handle had always stuck and was hard to turn. I hate myself for not being more alert to these symptoms. Why I didn’t pay closer attention and piece them together. Yet none of them were all in the same day, but randomly throughout the weeks. I guess it was easy to miss.
This week was when Madox began looking at us with one eye closed and said he was “seeing two”. We immediately clapped and said he’s going to need glasses just like his mom and brother. Over the week it got worse and he would say his sight was blurry now too. I knew this can’t be just needing glasses and the word tumour was blazing in my thoughts. I kept thinking he should have nausea, headaches, something else with the blurred vision. But every time I pressed Madox, he denied it all. We took him to an optometrist hoping I was wrong, saying glasses would fix it all. The only time I did not want to be right.
So I lay in bed thinking. Thinking of the week leading up to diagnosis. Thinking we should have taken him in to emergency sooner. Thinking being diagnosed a week earlier may have changed his course of illness. Thinking nothing we could have done differently would have changed the outcome. This month is tough on us all. Diagnosis day, Madox’s birthday and all the terribleness in-between. We use to look forward to March. That was before diagnosis day happened. That was before we heard the letters DIPG.
I’ve been told I’m not coping well. I’ve been told it should be easier by now. I’ve been told take some medication so you can learn to live again. I’ve been told so many useless, unhelpful things. Things I never once asked for. But I do have a request. I DON’T want your opinion how I am coping or handling this grief. I DON’T want you telling me how a person you know is doing SO much better than I am at this stage. I DON’T want you sharing how you dealt with your grief when your elderly mother or pet died. IT IS NOT THE SAME!!!! I DON’T want to hear any of it!
What I do want is for you to be accepting of my grief. Yes, I understand it makes you uncomfortable as it makes me uncomfortable to be so exposed. I want you to just BE with me. No judgement, no “fixing”, and sometimes no words. I want to know I have a friend in you that accepts me for me, and all that has happened. I want you to try, no matter how difficult it is on your heart, and think how you would feel if your child was ripped from you. I want you to understand how difficult it is day to day to rise out of bed for mundane tasks. I want you to know some days are good while others are a major struggle.
You should also know I cry often alone in bed while my husband is asleep. Struggling to keep quiet so I don’t wake him. Other times I sit on the couch in the dark straining to hear my son’s voice call me again, Momma. At times when I don’t sleep, I sit on the floor square to the television, watching old home movies. Laughing, crying, remembering, memorizing. What you don’t know is that I put on a smile when I am around you. That fake smile is full when I am at work with my patients, even though my mind is swirling with thoughts of my son. Sometimes someone will say one word or I will notice something and it will instantly bring me back to a specific memory. It literally is jarring and difficult to move to the current.
Then there are the certain days through the year that really debilitate me. The day my son should celebrate his birthday. The day he died. The day we buried him. And the day like today; the day he was diagnosed with brain cancer. I refuse to fake it on such a mind numbing day. Don’t worry, I did you a favour by giving my shift away so you didn’t have to “deal” with my emotions. Instead I will go to my sons graveside and ask him for forgiveness. Yes, I ask my baby boy for forgiveness because I didn’t protect him like I promised I would. I didn’t save him like a mother should. It is a guilt I will live with my entire life, so please don’t tell me not to feel this way. It won’t change how my heart feels.
I just want to know you are there for me. To know you are not judging. To know you don’t understand but you have tried and it scares you to your core. To know you will support me. To know that you love me. Know that I love and appreciate you.
When Madox was ill, we created a Facebook page called Strength For Madox. It was to allow friends to be up to date with Madox and our lives. I don’t post on that page anymore, as it had gotten too difficult for me emotionally. I poured my heart out on that page, hoping it would shed some light into a life with cancer. I was hoping it helped other families going through our pain. I’m not too sure if it did, but it helped me get my emotions off my chest. I used it like a diary, not caring how personal it was.
There was one post I remember that flowed off my fingertips. It was about the day Madox was diagnosed. I cried and cried as I typed, but I kept going as if afraid I would forget those memories, those emotions. I know now that will never happen. I still have nightmares about that day, about those words, about our heartbreak. Nothing will ever make me forget the first day we died. Today will be 2 years since diagnosis day. I decided to share that original post from 2015, altered slightly.
Two years ago today we got a diagnosis.
Two years ago today they told us you have a brain tumour.
Two years ago today you died for the first time in my heart.
It is still so clear in my mind, like it was yesterday. We woke up with you complaining of “a little headache.” You never complained, and when you did, you always down played it. To me, even a little headache, was a new symptom that I refused to ignore. After sending Valin off to school, we got ready for ER. You weren’t happy. I had promised you the night before we would have a fun day together, just us two. You had the day all planned. We would wake up, play some board games, go to subway for lunch, then mini golfing at your favourite place (U-Putts). Now I broke my promise and we were heading to the ER. “When they tell us that you are okay, we will still do all of that.” I said to him looking through the rear view mirror. “Fine” he responded with arms crossed.
We got in pretty quickly— bonus for knowing the nurses working that day. Nurse A even gave us the “observation” room as it was one of the more comfortable rooms that had more privacy and a television. I was so thankful for that. As we sat there, I just kept repeating to each resident “I just want an MRI.” We saw about 3 residents and one student. With each one that came in the room, they each performed the same neurological tests with the same results. “When is the neurologist going to get in here? I can see her out the door. She will get a better report from me than second hand from you. Just send her in!” I was getting snippy with everyone that came in the room. I was losing my patience.
It was now noon and Madox was more annoyed and angry. I guess he convinced himself he was going to be freed by lunchtime. I kept apologizing but started explaining why I was worried. “Sweetie, notice how it’s hard for you to stand on one foot? Your balance is off so we need to take pictures of your brain to make sure everything is okay.” “But it’s probably just because I’m tired.” I only wish it was just that. The neurologist came in (thankfully one that I have always respected and trusted) and performed all the typical tests, and so many more. As I watched I would rate each test in my head. The curse of being a pediatric nurse. He kept failing each one. My baby was failing his neuro tests.
The doctor agreed with me regarding the MRI and ordered it. I was texting Marco every 10 minutes it seemed about what was going on. He kept asking if he needed to be there. I didn’t want to admit that he did so I kept saying not yet. After watching the detailed neuro exam, I texted him and said yes come. He was in the ER with us within 40 minutes. We all sat there waiting for the MRI, watching tv or on Madox’s DS. So many things running through my head. My heart was pounding just thinking about everything that could be wrong.
Finally at 5pm we started walking to the MRI room. Madox was looking pale and tired, but walking fine. I was very worried. The technicians said ” we will do the 20 min MRI without contrast. The only time we do contrast is if we see something or if we are concerned about something.” As I stood inside the room rubbing Madox’s leg and staying in his mirror view, I would keep saying to myself over and over “be nothing, be nothing.” After the 20 min mark the technician walked in with her gaze down at the ground. “The doctor ordered contrast.” Tears instantly welled up in my eyes “they found something?” She didn’t look at me “they just ordered contrast.” For the remainder of the MRI I continued to rub Madox’s leg but cried the entire time.Thankfully he didn’t have a great view of me. I managed to keep smiling because I know he could see my big smile. “You’re doing great buddy. Just keep still” I would say to him throughout the test.
After he was done, he literally jumped off the table and started stretching “ahhhh that’s better” with his typical smile. HOW can he be sick? He’s acting the same as always, my same Madox! Back in our room, we waited for the doctor to review the results. It didn’t’ take long. They asked to speak to us in another room. A volunteer sat with Madox so we could talk “privately.” I knew once they said that, it was bad. VERY BAD! We walked through the ER to a back quiet room. My heart was in my throat during that long, terrible, mind numbing walk.
Today will always bear terrible memories for me, for all of us. Valin was picked up from a neighbour after school, so we could both be with Madox. Marco eventually went to get Valin at 7pm and had to tell him the reason why he had to sleep at grandma’s house for a few days. Why me and Madox were at the hospital. That conversation must have been so hard for Marco to have with Valin. So hard for a little boy to listen to and try to grasp. How can that make sense to him when he and Madox were wrestling the day before?
I hate March 7th. I hate dipg.