No I do not refer to the annoying bald kid who whines as much as Caillou, but rather a local eatery that on a Wednesday morning at 10:00 am filled its booths with aging boomers. The counter seats all taken by singles, mostly men, reading the paper. Isa, her baby and I called attention to ourselves as we looked for a seat. Many of these patrons, regular daily customers, knew that we were new. Not to mention the leopard print ‘Isa hat’ I was wearing with my husbands white karate pants. Having been stared at for most of my life, this phenomenon phased me very little.
With prompt and pleasant service, Debbie brought us coffee, pancakes and milk. After two very long days in the hospital Isa and I broke out a little to eat some sugar. Even though the cold temperatures made us catch our breath the sun shone down to warm our spirits.
For many days recently, I’ve intermittently felt teary and sad. We’re coming up to Isa’s diagnosis-versary or diagnoseversary? The anniversary of her diagnosis. But the weeks before she received the diagnosis contained pain, fevers, screaming and the feeling that something wasn’t “right”. Those weeks, the last ones in December of 2008, were a year ago.
Every family with a child who has cancer can relate to the rollercoasters of emotions. Right now, as we crawl toward long term maintenance, I feel relief, but perhaps a bit melancholy because as I look back on the previous 12 months, so much has happened.
The cold during her first admission to the hospital was so frigid I could barely breathe. Wrapping Gg up in a woolen army blanket, I actually held her on my lap as we drove in circles for the five-levels of the parking garage as we left at almost midnight. Too worried to leave any sooner, as well as staying long enough to exit without paying the huge parking fee. As a young adult walking to classes at the university I considered the cold an enemy, but as a mother who’d been cooped up in a tiny hospital room with a two children, ages 3, 4 plus a 2 yo roommate, the cold became my method of clearing out the cobwebs.
Today, for the first time ever, I told Isa, “I love the cold, especially when the sun shines like this.”
Last week, we entered the second half of Delayed Intensification for the protocol Standard-high ALL 0331.
Day 29 should have contained eight hours of fluids, and many medications, but by not making counts the onc docs pushed her back to Day 36. Therefore the cytoxan, mesna, ara-c,came a week late. Subsequently she lost every single little chickie hair she had growing. Her eyebrows are gone again.
Day 43 and 44 held two blood transfusions, a lumbar puncture, two rounds of IV chemotherapy, and a continuation of the nightly routine of crushing pills. Isa suffers from febrile non-hemolytic transfusion reaction >>> meaning she gets a fever whenever she gets transfusions so we pre-treat with benadryl and tylenol. We made this change after two back-to-back hospital admissions for high fever. Likely a these wouldn’t mask a a severe hemolysis. Blood transfusions are serious business.
Everywhere I look these days I see a little to be happy about, but also a little to be sad about. Sometimes the one thing elicits both responses. Today at breakfast, I saw an older couple sitting side-by-side in the booth. She saw me looking and said that Isa was cute, I told her I was just thinking the same about them. As she left, she said she didn’t get to see her grandchildren often. Sadness, you see the place was filled with a population that, essentially, is dying. The same as the oncology department is filled with children whose lives could be cut extremely short.
While in the waiting room at clinic on Monday, I met a family with a three-year-old child recently diagnosed with rhabdomyosarcoma. The type of cancer my brother-in-law died of 30 years ago. He was almost 6. The prognosis for this type of cancer continues to be on the more negative side. As I spoke to that family another girl, her bald head covered in a black hoodie became interested because she too was diagnosed at three with alveolar rhabdomyosarcoma, at 14 she continued her battle with a relapse.Currently the statistics show that at five years after diagnosis about 20-25% of children diagnosed still live. She had beat the odds for 11 years.
The next day, I saw a bubbly three-year-old enjoying playing with a musical toy immensely. His squeals of delight filled the room. Talking with his mother about his excitement she eventually said, that he was here for a relapsed brain tumor. The docs have told her that they will give him chemo for “as long as he tolerates it.” For the entire three years of his tiny life she’d spent countless hours on the third floor. She also gave me the code to the nutrition room, so now I can unlock it at will. Thanks to her for sure!
Considering statistics in a vacuum as my friends have reminded me is just a lesson in frustration. Science and studies are a human way of trying to accumulate “knowledge.”
A friend also suggested “to be strong in the knowledge that her soul knows about the journey that she and all of you are on.”And to live now and to be free and no longer captured by those statistics.”
And another friend put it this way,
“Every day is a gift with no guarantees, but the odds of beating cancer rise inexorably with every moment that passes. Take it from someone who’s playing the odds, 5-7-9 years don’t exist in the present.”
I love my friends.
Still, yesterday as I sat in the infusion room I heard lots of comments, being only separated by a curtain offered me that privilege. One girl coming everyday for chemo had a scan to see what position her port was in. One mother had a child, who like Isa used to do, screamed as his port was accessed. I listened to the furtive comments about Boots as she held his head, he screamed, “don’t hold my head.” but being mired in her own distractions, she didn’t listen and he swatted her hand. Isa too would shout to leave her alone and not “hold” her or what-not. BUT it is so strange to hold a child down for his own good. So as parents we also distract ourselves. Hoping to poke inch-long-needles into their chests really aren’t things we wrote in about in their baby books.
So, yes, today is today, and yes, tomorrow has its own concerns, but as the cold descends upon us, and the possibility that we might all make it through this alive sparks hope, the ambivalent feelings I have about life are just that. Feelings that come and go.
These days, I relish the smell of Isa and her snuggly warmth as we sleep together. Also, she still gets in trouble and continues to learn as “normal” children do, even though she hasn’t been normal for a year.
Thank you for reading,