From Mikelle to Four Square Team Captain: “I wrote again.  I realized that I needed to tell “The Rest of the Story.”  It’s about the truth of my grief, what I’ve been through.  If you choose to publish it, my hope is that other parents like me, will be able to see that sometimes talking about it helps and they aren’t alone in their grief and feelings.  The picture attached is the last I have of him, it is very hard to look at, but it is the truth.” During the editing process, she went on to write, “I don’t want to upset anyone. I just want to reach out to those that are grieving. It’s a very hard place to be in and this might help others realize that they should talk about it. You can add in there that if they need someone to talk to, or just listen, I’d always be there for them.

I wrote a blog last week about the lessons I had learned from losing a child with cancer.  After re-reading it and seeing the comments, I feel there is more that I need to share about what I have learned.  If you are like me and have lost a child to cancer, my hope is that, if you feel alone, or have a hard time speaking about how you feel, or are unsure if you are the only parent to feel the way you do, you will see that you are not alone. If, on the other hand, you are watching someone else go through this grief, maybe you will be better able to understand. Here’s the rest of my story.

As you know, I lost my son to cancer.  In the end, on this truly unforgettable day, Ryan was on an oscillator to help him breathe, and dialysis for his kidneys, plus he had so many IV pump machines that I lost count.  My guess is at least 20.  The morning of August 11, 2012, as the doctors were doing their rounds, my husband and I stood outside his room and listened to the plan of the day that was being discussed by a group of what appeared to be 10 to15 doctors and nurses standing in a circle.  The resident doctor suddenly stopped the discussion.  She looked directly at us and said, “He’s dying… We need to stop this talk.”  Those words were like sharp knives stabbing me over and over and over.  I couldn’t breathe any more.

The doctor explained that we could keep trying and continue to allow him to be on all the machines, but now there was a chance his lungs may burst due to the high airflow of the oscillator that was breathing for him.  We did not want him to suffer, not one bit.   After hearing this, we made the decision to turn off everything.  In 30 seconds, it was over. Life had stopped for him, and also for me.  A piece of me died on that hospital bed along side him.

Now looking back, how could I say that we didn’t want him to suffer? I feel guilt when I look back at what he went through. I’m sure many parents feel the same way at some point.  The treatments he had to endure are too difficult for anyone to believe.  He had several rounds of very harsh chemo.  They had to insert a Broviac in his chest. It is a permanent double lumen IV and it was used to administer all the drugs he needed during treatment, it’s different than a port.  That surgery caused a pneumothorax and required him to have a chest tube in order to drain his chest wall. It was filling with blood and making it very difficult for him to breathe. He endured septic shock at least four times.  He contracted meningitis from no counts (his immune system was not functioning) from chemo .

Excess fluid on his brain caused Ryan to have massive headaches. He had to have a spinal drain.   We learned it was necessary because of all the chemotherapy drugs they put into his spine.  Later, if he became well enough to endure the required surgery, this would have required a permanent cranial shunt.  He needed countless bone marrow aspirations.  He had several double lumen pic lines placed in his arms numerous times to accommodate all the medicines he had to have running through his body.  There were days to months of not eating. He had a NG tube placement at least four times.

There were days of vomiting for hours. He had unexplained stomach pains for months that no one could figure out.  Ryan was urinating huge blood clots that caused severe pain.  On at least five occasions, to help pass the blood clots, Ryan had to have the largest catheter placement a boy his size could use. After screaming for three days straight, he was put in a medically induced coma to control the pain in his head from the cranial fluid build up. Ryan had one week of cranial radiation once a day and then two times a day for another week, plus full body radiation, and several other treatments.

And I said,  “We didn’t want him to suffer?”  Well, this is the reality of cancer in children.  I can’t breathe when I see this list of treatments all typed out.  He was my baby boy, my world.  Somehow, he smiled through all that he endured. Ryan did not lose the battle or his life, it was taken from him by cancer.  This is the hell these children endure in the hope of a “cure.”

After Ryan died, we loaded up the car with all of our stuff from the hospital room, and all of his stuff.  We loaded what was our life for almost a year into that car. We loaded everything, but we had to leave him.  He wasn’t coming home, just his belongings.  I’d never been away from him for more then a few days.  I knew it was forever now.  I kept thinking, “I’m just supposed to leave him here?  I have to leave him here?”

All at once, like an avalanche, thoughts began to rain down on me. We need to plan a funeral…or something! The money, where do we get that?  He had life insurance, but we couldn’t get that until we had the death certificate.  We couldn’t get the death certificate until we paid for his transport from the hospital to the funeral home where we had him cremated.  It was a very rough couple of weeks to say the least.

We didn’t go see his body again before they cremated him.  I just couldn’t do it.  I had a fear that when I saw him, I wouldn’t leave. I could not stand the thought of having to let him go all over again.  Later on, we had a celebration of life for him.

Looking back, it was like I was living in a fog for days after he died.  I barely remember that now.  Three weeks after he had died is when I had the hardest time. I hit rock bottom.  I was in a very dark place. I was convinced that Ryan needed me.  That I shouldn’t be in this physical world anymore, I should be with him.  He had never been from me that long.  Was he crying for me?  Did he miss me?  Did he need me?  Thankfully, I called some friends and they helped me through it, then later, I sought out counseling.

 The months that have followed since losing Ryan have been a struggle.  I’ve had people ask me if I ever cry, or fall apart.  I laugh.  My response is “Yes, and it’s not pretty.”  I don’t speak about it often because people seem to shy away from the subject of losing a child.  They don’t know what to say.  No one does.  As a parent who lost a child, I still don’t know exactly what to say to others in my situation.  I thought I’d have something brilliant to say, maybe a way to help them with my words, but I don’t. All I can do is tell my story.

My marriage has held up for the most part through this.  We have been to counseling because we both feel so lost at times and it’s like we can’t remember how to connect.  When Ryan was sick, our life centered around his care, our every waking thought was about cancer this, and cancer that.  We were like ships passing in the night.  We knew the other one was there, but it was hard to see them through the fog of Ryan’s treatment.  Our date nights were ordering food and sitting in the PICU hallway on numerous occasions when we had someone to watch our two girls. Now, the hardest part is knowing that we both are not as motivated as we once were.  There are days where it’s easier for us to just sit on the couch and say nothing than to address the non-stop thoughts that run through our heads about Ryan.  Some days it’s easier to focus on our foundation than it is to try to find the words to tell each other what we are thinking. Don’t get me wrong, we have discussed it quite a bit, but some days it’s just hard to share how you are feeling deep inside your head.

We have two daughters.  Sara is 11, Skylar is 8.  We still have to be parents to them each and everyday.  Some days, even when you don’t feel like it, we have to comfort them when we can’t comfort ourselves.  I don’t want them to see me cry all the time because I want them to know that I’m still strong enough for them. If I do cry in front of them, it makes my oldest cry and I feel guilty about that.  A few days after Ryan died, I remember when I came downstairs after I woke up and saw the girls and my husband sitting on the family room floor playing a board game.  I lost it, I wanted to run away, I wanted to scream and cry.  One of us was missing.  I’ll never forget that image or beginning to set the table for four instead of five.  No more washing little boys clothes, no more cars to step on in the hallway, no more hearing his laughter as his dad chases him in the house.  My husband no longer has a son.  He has no son to grow with or to teach “guy” stuff.  I have no son to teach how to treat women.  There are days where this is all I can think about it.  I couldn’t walk in Wal-Mart for a few months.  A few weeks after he died, I tried to go to get a few things and I had a panic attack in the middle of Wal-Mart. I saw his favorite comic book character and, out of habit, I went to go grab it for him and realized I can never, ever buy it for him again.  The little things are what get me the most.

Sometimes the negative comes through, but when I post things on Facebook, I am very careful to say only positive things.  I am afraid that people will think I need to get over it.  Or that they will just feel bad for me and scroll right past a post.  Maybe they will just shake their head because they don’t know what to say.  I don’t want to make them feel awkward or uncomfortable.  I do enough of that in my head.

Many of you will understand if you have experienced the loss of a loved one, but to others this may sound complicated. I do want everyone to know that I am not okay.  Nor will I ever be okay again.  My “OKAY” was my son Ryan and when our family was whole and complete.  On the other hand, I want people to know that it is okay to talk to me about Ryan, or even ask randomly if I’m okay.  I want them to know that some days I would like them to, out of the blue, tell me a story about Ryan or send me a picture they found of him.  Please don’t lock yourself out my life.  Sometimes, I feel like I wear a huge “CL” on my forehead that stands for “Child Loss” and people are afraid to approach me or talk to me.  You won’t catch my heartache and I don’t expect you to catch my tears either.  What I want is for you to not put me on a pedestal. I get told so often, “I admire what you are doing, you are so strong”, or “I’d fall apart if I was you”, or, “How are you handling so much?  I could never do that.”  The list goes on and on.  I appreciate the comments, I really do, but it makes me feel like I can’t fall apart, or if I do, that it may be that people will lose their respect for me.  I walk on the same ground you do. I am YOU.  I am doing nothing any other parent wouldn’t do.  I don’t see myself as some superhuman hybrid. I see myself as someone teetering on the edge of keeping it together and everything falling apart.  Some days I teeter more to the left, sometimes more to the right.

My hope is that by writing “The Rest of the Story” that I open up a door of communication for those that are grieving or in some way, help those who are watching someone else grieve.  Everyone grieves in a different way.  My mom helped me the most when she said to me, “Mikelle, you won’t ever learn to just move on, but you will learn to move with.”  I truly understand this now and she was right. I am unable to move on or move beyond, I chose to move with.

Author: Mikelle Raffel

Related Article:  Lessons of Losing a Child to Cancer

Warning: The photo below is of Ryan  just before he died.  It may be disturbing for some to view this photo, therefore please use consideration before scrolling down.

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