Silver Strings and the Fear of Relapse

Silver Strings and the Fear of Relapse

Children's Cancer Research Fund Stories

Written by Deanna Senior, mother of Sydney. Sydney was diagnosed with Burkitt’s Lymphoma, a form of non-Hodgkin’s lymphoma in Spring 2015.
Diagnosis

I was by myself with Sydney when she was recovering from surgery and the oncologist told me that he felt 99 percent sure that she had cancer.

After the biopsy, her doctors peeked their heads in the curtain and motioned me out into a conference room right next door.  We all sat down and exchanged pleasantries.

It was cold in the room and I had casually put one foot up on a chair to get comfortable. I was facing the beautiful skyline of Minneapolis and watching the progress or the new Vikings Stadium.  Then they said it, “non-Hodgkin’s lymphoma.”

The air was sucked out of the room and I had an out of body experience, the floating body was looking at Sydney in her room and the physical body was holding back tears, wanting to kick the chair across the room.

Silver Strings

Over the next five months, after surgeries, a blood transfusion, lumbar punctures and chemotherapy, Sydney and I ended up spending every single moment together.

By the time we left Minneapolis we were one person.  I have heard that moms have this phenomenon called “Silver Strings” when you just know exactly what is happening with your children.

I know even before I go into her room how she feels. I have always felt I had some sort of sixth sense with those who are close with me.  I have it with all of my children, but as you can imagine, after 110 days together Sydney and I were really in tune.  Let’s put it this way, her silver string is titanium strong and I know any separation with her will always be difficult.

Creeping in the night

I used to spend nights watching her breathe because I thought the chemo might kill her.

There were some nights that I was so exhausted, I could lay my head down on that hard hospital sofa and fall asleep before I hit the pillow.  It’s the nights when I was awake that were the worst.  I recall one night early in the chemotherapy process. It was a bad day, she was sick in every way, and I wished it was me instead of her.

She was still in pain from the surgery, she was vomiting and had diarrhea, and I could remember her little eyes rolling in the back of her head because she was so weak. We were up all night with nurses and doctors checking in and both of us were haggard. The room smelled of everything you expect of a hospital but worse.

She and I needed showers desperately and she asked me to lay with her in her bed.  That was the first night of many when I laid in bed with her. When she did sleep, I watched every single breath. If she skipped a breath or it was too long between a breath, my heart would beat stronger and stronger, like I was taking everything I had and was and giving it to her, so she could keep fighting, keep going and keep slaying this horrible disease.

Thankfully, she never got to that place where I felt I had to scream down the hallway or press a button out of fear we were losing her.  She is a strong one!

The fear of relapse

Now, every single moment of every single day there is something in the back of my mind sucking the life out of me. And fear creeps in.

If she has a stomach ache, a bout of diarrhea or is over fatigued, I am afraid that we have to go back.  This is what going back means:

It’s not just a five month situation— it is stem cell transplant and many, many rounds of chemo/radiation that will shorten her life span no matter what. Sydney was given three different types of chemotherapy, and just when you would get used to the effects of chemo, it will be completely different the next round. The worst, most horrifying side effect was when the chemicals gave her sores in her mouth and her entire esophageal path— all the way through her.  Imagine having blisters inside your body from mouth to bottom.

That is just not acceptable to me.

But, I do everything to live each day to the fullest. During that fullness, relapse terrifies me.

According to the team of doctors, there is no way of knowing if she will relapse.

I must be vigilant, but there is a fine line between vigilant and paranoia. It has only been a couple of months since we have been home— finding a balance nowhere in sight.  But, I will not give up.  Not with Sydney the Cancer Slayer in the house.

She amazes me every single day, and one day I will get my sanity back.  This dark alley will lead me to a beautiful sunny day. I am not going to lose my daughter to cancer. I am the Cancer Slayer’s mom.