When Your 5-Year-Old Has Cancer
Beautiful writing from a mom in an incredibly ugly situation
-Julie Ryan Evans
I told you awhile back about reuniting with my friend Kathy, only to find out a few months later that one of her twin 5-year-old boys has cancer. Bad cancer. She started keeping an online journal at CaringBridge, and her writing is so powerful, so beautiful, that I wanted to share some of it with you.
Beyond the additional prayers, sending of positive energy and whatever else you have in your arsenal, I think her story is so important for all of us to know. To be reminded of the brevity of life and to appreciate each and every day we have with those we love. Because really when I’m depressed after a pool party because I’m not one of the moms who is strutting around in a cute little bikini but rather one huddled under an umbrella shade wondering how I’ll ever lose these post-baby pounds, I stop and think of Joey and remember how ridiculous I’m being. How grateful I should be for the important things, that my children are healthy … for now. And how, in a flash that can all change.
Here are some entries from Kathy’s journal. To read them in their entirety and follow her journey, you can sign up here www.caringbridge.org.
Thursday, April 23, 2009 6:23 PM, CDT
This is how it began…
Today, Joey had planned for his three brothers, himself, and me to go on a picnic for Earth Day. He had the park picked out, and planned how we would play first, then eat lunch, then pick up any trash we saw in the park. That’s Joey – he’s a planner.
But, unfortunately, his plan would not come to fruition today.
In the morning, I heard Joey in the bathroom. He had gotten up and had been sick. Not unusual, as all the boys had been under the weather. He changed his clothes and returned to bed. I let him sleep, figuring he needed the rest. I heard him get up and get sick again, after which he again returned to bed.
About an hour later, I went to his room to check on him. I saw that he had thrown up on his bed and on the floor. I questioned him about knowing he had done this. He answered with a robotic, “No.”
I asked him to look at me, but his eyes were looking off to the side. I asked him to point to me, but he pointed off to the side. At this point I became concerned. I felt his chest -his heart was racing, his breathing was shallow. Then, his eyes began jerking to the side, and his left hand was shaking. I quickly called his Dad, and asked the receptionist to interrupt whatever he was doing.
He told me to take him to the doctor or to the hospital. At this point he began having what I now know was a seizure…
They took Joey for a CT scan. The whole time, I searched the faces of the technician and nurses for some clue of what might be wrong, but found none. The radiologist would have to read the scan.
Soon after, the ER doctor walked up to me and said flatly, “Bad news, it’s a tumor.” …
It’s surreal. It’s hard to believe this is our life, our child.
Monday, April 27, 2009 10:25 PM, CDT
The biopsy results came on Sunday. It is with a heavy heart and a sick stomach that I tell you the news is not good. Joey has the same type of brain tumor that his grandfather succumbed to ten years ago this month. It is most likely one tumor, with an extension, of a grade 3 or 4, and quite large.
I began hyperventilating when Rick told me the news. There are not words to describe how sick and angry I was and am. This is not a final diagnosis; it still needs to go to the “tumor board” (yes, that’s a real thing, not just something they made up for an episode of Gray’s Anatomy). They will meet in about a week, make the final determination, and recommend the best course of treatment.
Best course of treatment…
Thursday, April 30, 2009 10:39 PM, CDT
Today, we are back to our routine life – waking up, eating breakfast, playing, eating lunch, taking boys to preschool, the bustle of dinner and bedtime…
Crying has become routine, too.
Every time I go into a room by myself…
Every time I see or talk to someone…
Every time I read a note written by someone in shock…
Every time Rick and I are alone together…
I thought I could hold it together long enough to attend Adam’s preschool chapel time. I sat there for fifteen minutes and was fine. Then two moms walked up to me with tears in their eyes…
Joey has eaten well at home; he has played trains, read books, even played outside for a little bit.
But he is different – he has already changed. I can’t explain all the ways…
What has not changed about him is how sweet and loving he is with his brothers, how he wants to keep busy, how helpful he is, how he wanted to try every single ice cream topping that was brought to us with dinner by a generous family.
Physically, he is still slow and weak. He cannot control his shivering. The tumor is near his thalamus, which is a gland that, in part, helps regulate body temperature.
We are planning that picnic. I marvel at the springtime beauty as I see grass becoming so green, trees that are sprouting white, pink, and purple blooms, and flowers – so many colors and varieties.
But, I notice with new eyes, the flowers that didn’t bloom, the random bush that is still brown, the trees that do not have any leaves yet…even in our own front yard.
Thursday, May 7, 2009 9:54 PM, CDT
I’ve been holding my breath a lot lately. Every time Joey says his stomach hurts or his head is warm. Every time I watch him sleeping. Every time I see his stitches or feel his shunt. I hold my breath when I go to preschool drop-off. Is someone going to come up to me with tears in her eyes? Is someone going to ask me how we are doing? Most of all I hold my breath not wanting to let out the feelings I am holding in, wanting to believe that if I hold my breath a little longer, maybe things really will return to normal…
Tuesday, Rick, Joey, and I went to the hematology/oncology clinic at Children’s. Walking in was a surreal experience. The receptionist was a little too cheery for my taste, explaining the routines, what would happen everytime we would come, where the snacks were, how to order lunch. I wanted to throw up. In the waiting area, two moms chatted as their son and daughter, hooked up to IV’s delivering chemotherapy drugs, played a game together. They both had a full head of hair and were happy and cheerful. I don’t know what I was expecting to see. The receptionist did say there were private rooms in the back – maybe that’s where the really sick kids were.
What we discussed was mostly what we already knew. Joey’s tumor is a grade three anaplastic astrocytoma – and yes, he actually has two tumors that seem to be unrelated. Surgery is not an option, radiation does not even appear to be an option because, what we did not know, one of the tumors is deep into his brain stem. Radiation would cause his person significant damage. She said the words I have known for two weeks, “There is no cure for this.”
I have been holding my breath, not wanting to tell you this. Not wanting to tell you because it makes it too real. In the stages of grief, I am in denial. Yes, I know the facts, but I want them to be something else. The doctor could not believe how good Joey looked, how happy he was to play in the playroom with the Child Life Specialist, how great he was getting around. At home he is sweet to his brothers, he laughs, he clears the table for me and puts away his freshly laundered clothes. I don’t want to believe he is sick … terminal.
Monday, June 22, 2009 9:11 PM, CDT
Today I was going to write about our recent family trip to Florida.
Today, I was looking forward to taking the boys to their first day of tennis lessons tomorrow.
Today, I was going to call the Make-a-Wish representative back.
Today, I am sitting in the hospital once again with Joey.
Today, Joey had an MRI. We have had this scheduled for a while, in part to use as information for Joey’s trip to see a doctor in California. Today, it was decided, he is not stable enough to travel.
The physical changes in Joey have been creeping up on us. His left side is weak, his hand shaking almost constantly. He has difficulty chewing his food, and it sometimes hangs out of the left side of his mouth. Almost every day in Florida last week, he complained of a headache, something he hasn’t done since April. And of course, there is the vomiting, which continues…
It was no surprise to us when Dr. Abromowitch (hem/onc doc) told us that there has been significant growth in the tumor. So much, in fact, that his brain is crowded. Having no where to go, it could herniate into his spinal cavity.
“If that happens,” she said, “he would struggle to breathe, and then he would die.”
I have to say, I really appreciated her frankness. I need to know what might happen.
The decision was made to admit Joey into the hospital and give him steroids in order to decrease some of the swelling. As I type, I am told, Dr. Abromowitch is working on getting radiation set up, because “something has to be done.”
To read Kathy’s journal in its entirety, you can sign up here.
Read Julie’s latest blog: I Don’t Do Fabulous Anymore