I haven’t been able to write. I haven’t been able to do much of anything but survive and survival has taken on a completely different meaning from this time last week.
What can I say? The word that I have most dreaded in my entire life is now inside of my son, my three-year old son. CANCER. All the BS that I have been going through in the last six months has been nothing compared to this… NOTHING. Cancer took my mother. It took my grandmother, my grandfather. It even took my fur-baby, Lucy. It has threatened my father for the last ten years. Now it wants to take my son. The audacity. The nerve of this disease. I’m pissed. I’m beyond pissed. I’m so angry that the only thing I can do is survive every day to fight back. To hold my four other kids up so they don’t lose their way. Walk my baby through this horrific journey of needles and procedures so that he can find the strength to fight back. We all have no choice but to win.
It’s a beautiful day out, one where I can sit by a window and feel the sun, but that is all we can do. Bro hasn’t been outside in almost three weeks. He won’t feel the air until after the Fourth of July. We watch the birds soar from our window at Children’s Hospital. We watch the pedestrians below who walk with no other purpose but to stroll and enjoy the weather. I can almost smell the hamburgers on the grills this afternoon. When he is too tired or sick, I open the shades and he gazes out the window. This isn’t a life for anyone. I took so much for granted. We were so go, go, go. Where was the life?! Where was that family?! You never really see what you had, wasted, forgot about when life doesn’t threaten it.
What started out as strep throat for a month, ended up with a diagnosis of B-ALL for Brody. It is a form of leukemia. I casually went to the pediatrician’s office on that Friday to ask if maybe there was another med that we could try. (I keep strep test kits at home, so I knew it was still present…) He was listless and really wasn’t my vibrant boy. The strep test came back positive and the doctor suggested giving the antibiotic more time, but that fluids would be a good idea. Off to the hospital we went for some IV… thought just an IV and I dreaded the idea of sitting in the ER for hours to give him what I thought I might be able to get into him with a straw and cup at home. They ushered us in and did the basic mandatory blood work. I should have recognized a problem when they came back and asked to do the draw again. The lab didn’t think that the results were correct, the blood counts were so low across the board. He had barely any red blood cells (making his heart have to work harder just to keep oxygen going through his body). He had barely any white blood cells making it impossible for his body to fight off the strep. He didn’t have any platelets. Cut him and he would bleed uncontrollably. His heart could simply give out from all the work it was doing. The lab couldn’t believe that the results were correct so they ran them again. Something was up. They were sure it was nothing… right?! Or was I just hoping that?
We raced to Children’s in an ambulance and they quickly moved us to a room for intense antibiotics to kill infection and meds to bring down the fever. I should have known from the faces. I was still convinced it was still an abscess on this tonsil from the strep. The fevers wouldn’t abate and we were on the edge of just keeping him comfortable. His bone marrow wasn’t making ANY white blood cells, red blood cells or platelets. It couldn’t. This wasn’t strep throat. It was something else. We needed someone else’s blood to keep him going. This was another animal all together.
Two bone marrow biopsies and one spinal tap later and we were looking at leukemia or aplastic anemia. What happened to strep? We rolled the dice, and in a consult room alone, I got the results… leukemia. Now we are in this nightmare that lies before me.
There are countless people who are helping us. My heart swells when I find out the small and big things that they are doing: meals, heartfelt donations to make our time easier, anonymously taking out the trash, cleaning my car, making shoes appear in the hospital room… Amazing aid. It has come from adults and children, strangers and friends. The love has been incredible and I don’t think I could have made it this far. My kids wouldn’t. My family wouldn’t.
But when the truth comes down to it, I’m still fiercely angry at this disease.
I think that I lived in a bubble. I thought that cancer couldn’t get my family anymore. That maybe I had paid my deductible and we were no longer going to have to fight it. It had taken enough members. I was wrong.
Anger is a word that doesn’t even really begin to cover it. I hate this disease. I want to take it by the throat and throw it down a flight of stairs. I’m pissed. It affects too many people. It takes children and adults without any reasoning. It is ugly. It strikes unannounced and throws everything upside down. The worst is that it takes kids and makes them fight fights that should have never have to be fought when they are still young and innocent. It makes them sick. It is just so wrong on so many counts.
So, yes. I am feeling so much but beyond the numbness to just get through, there is deep anger that swells. Maybe that is how things change. When people become angry enough, they force awareness of these evils. They donate. They bring about more change through research. Maybe some day, that anger will all bring about a cure. I can only hope for that, because there isn’t Teflon sprayed on families deeply effected.