My baby is FIFTEEN today! What?!? Every year on their birthdays I like to look back at pictures of them as they were growing up. Partly because I love to remember all the special years I have been blessed to be their mother, and partly because they are teenagers and I want to remember when they weren’t…teenagers. A time when they laughed at my jokes, couldn’t bear to be away from me even long enough to pee, and a simpler time when they were all mine.
Thinking back on the fifteen years I have spent on this planet with Clara brings me joy, and brings on the tears. There was a time when I thought I might have to navigate this life without her in it, and just the possibility brought me to my knees.
When Clara was two-year-old she started running a fever. She wasn’t sick per se. No vomiting, diarrhea, or runny nose…none of the things that are common in little germ factories. She just had a fever. Every day she would wake up and her fever would be a little higher. But without any other symptoms, there really wasn’t a reason to take her in. They won’t do anything but tell you to alternate Motrin and Tylenol until after five days, so long as the fever stays under 105 degrees. On Sunday, day five, her fever was 103.5 with Motrin and Tylenol. So, Monday, I took her to the doctor. Of course, her fever was only 100.7 when the nurse took her temperature. The doctor told me it was just a virus that was on its way out and she should be better soon.
The next day, she had no fever. But she didn’t look right. She was incredibly pale and had dark circles around her eyes. I’m sure my friends, sisters, and mother got sick of me telling them she looked sick even though she was eating fine and acting fine. I took to Google and started looking for answers. Of course, if you spend too long on any medical website you will shortly be convinced you are dying or will be soon. I let it go. The fever was gone, no need to borrow trouble.
On Thursday I had to work. I took the kids to the babysitter and left them for the day. When I picked them up, the parents in the neighborhood were talking about the start of cold and flu season and how its months of someone being sick in the house with one thing or another. I commented on how sick my first two were, and how Clara was my healthiest and happiest of the three (I later wished I had kept my fat bragging mouth shut). Clara had a good nap and was in a good mood as we set off for soccer practice. She fell asleep again in the car. And then fell asleep again on a blanket in the grass during practice. Even though I thought it was strange, I am a strict adherent to the “never wake a sleeping baby” doctrine, and enjoyed the peace and quiet while Elaine ran around with her little soccer sibling friends and Jordan played Star Wars in the goalie net instead of playing soccer (that’s the real reason he wanted to be the goalie).
After practice, I picked Clara up off the blanket and she was burning up. The fever was back with a vengeance and I knew that meant trouble.
I debated whether to take her to the emergency room that night or call first thing in the morning. I asked a friend for some advice, but they said just follow my instinct, I would know what to do.
Jason was deployed to Iraq, so I was all alone with the kids. Leaving and going to the ER that night meant getting someone to sit with them for hours and it was already 9:30. I decided to wait.
We got to the clinic about 9:30 in the morning and saw our pediatrician, who was a doctor I could talk to, and who listened to me when I told him something needed attention. My Googling had turned up a few possibilities, Mono was one I thought might be fitting to her symptoms. He suggested running a test for Cat Scratch fever as well since we have a cat. Most of all we just needed a CBC to see what her immune system was doing and that would tell us a lot about how sick she actually was.
The lab was a nightmare. The technician stuck a needle into my baby’s arm and then proceeded to fish around under her skin trying to find a vein. Up to this point, I had been very upbeat and calm because I didn’t want Clara to have unneeded stress over the situation. Seeing the travesty happening in front of my eyes, I very calmly and sweetly said, “I need you to remove that needle and step away from my child right now”. Sensing the danger in ignoring me, the tech stopped, removed the needle, and stepped back with his hands raised where I could see them. I then told them to go find a supervisor to do the blood draw. The supervisor opted to do a finger stick since they didn’t need much blood. Fine by me.
After waiting in the exam room forever, the doctor came back and told me the blood sample had been damaged and they needed more blood. This time I requested a flight nurse, and I would be happy to wait for one. He happily obliged and the flight nurse was able to quickly and efficiently draw blood without incident.
Again, we waited. This time, the doctor came back and started pacing…and when he finally started to attempt words, he was stuttering, but I managed to pick up that the blood sample wasn’t damaged and there was a problem. She had no immune system and would need antibiotics immediately while we waited for an ambulance to transfer her to a hospital because her platelets were so low it was dangerous to transport her in a car. And then he said the word I never thought I would have to hear about one of my children. He said it was possible that she had cancer and they would need to do more tests at the hospital to confirm it.
I nodded as if I understood. But it was surreal. Just a bad dream. I was calm.
I put Clara in her stroller and wheeled her into the bathroom where I crammed myself and her with the stroller into a stall where I called my sister. And then I had to say the word. Cancer. And that’s when I lost it. I heard the bathroom door open, and then I heard the person turn around and leave. So I cried some more. My sister assured me the kids were fine and she would keep them until she could find a sitter for all the kids, hers and mine, and meet me at the hospital.
Then I pulled myself together and focused on something I had been putting off all day. I had promised Clara chicken nuggets as soon as we were done at the clinic. By golly, I was going to find a way to get that sweet baby some “chickie bites”
I only knew one person that lived on the base where the clinic was. I called Stacey. I casually explained the situation and told her I needed an order of Chicken Nuggets from McDonald’s if she was available. She said, “Of course, I’m happy to, but can we get back to the cancer thing”. Not in those words, because Stacey is far nicer than I am, but you get the idea. What I didn’t know was that after she got off the phone with me, she called her husband, Tom, and they notified the First Sergeant. They were trying to get in touch with Jason before I ever got into the ambulance. When the nuggets arrived, Stacey took my keys and they delivered my car to my house. My car! I didn’t even remember that I had a car! Or a husband! All I could think about was that little girl in my arms and how to find out what was wrong with her so we could fix it.
The hospital was another nightmare trying to get more blood from Clara. Jason’s sister and my sister were both there with me. As four nurses held Clara down to try and get a blood draw, I was on the bed with her trying to calm her. Then she stopped crying “mommy”, and turned to Jason’s sister and cried out, “Aunt Jill!!!” She no longer trusted me to protect her and I felt my heart shatter as a piece of my soul tore away. It was almost as brutal for me as it was for her.
No one could get in contact with Jason to tell him what was happening. He wasn’t at work, and no one knew why. Finally, my friend Tiffany in North Carolina contacted her husband who was deployed to Afghanistan and asked him to track Jason down. He told Jason’s command to send someone to his quarters and find him, there was an emergency at home, and he needed to call immediately. So they banged on his door until he answered it and he called home. He was grumpy, but I told him what was happening, and after everything fell out of my mouth, I asked, “Why aren’t you at work?” to which he replied, “It’s my birthday, I didn’t have to work today.” “Well…happy birthday,” I said. His BIRTHDAY!!! I forgot it was his birthday and told him his baby might have cancer…on his birthday! This was not my proudest moment as a wife. Mind you, I knew he was having a birthday, and had sent a box with gifts, cards, goodies, and letters weeks earlier to ensure it would be there on time. But that day was not his birthday where I was, it was the day before. Due to the time difference, it was his birthday where he was. That’s my only defense…weak…but that’s all I have. Ok, I admit it, I sucked as a wife in that moment, but normally I rocked birthdays and anniversaries.
We were in the ER for hours before the hematologist came to see us. She told us after looking at the blood work we were either dealing with Aplastic Anemia or Leukemia. Then we were transferred upstairs to the fifth floor where Clara would be admitted for further testing, a bone marrow test, that would give us a definitive diagnosis. They wheeled Clara’s hospital bed down the hall to an elevator that was dressed up like a big yellow school bus. “How fun!” I told her, but she no longer wanted to have fun. She just wanted to go home, and so did I.
It wasn’t until we went into her hospital room and they were getting her hooked up to all the machines and I looked down and saw the words, “Pediatric Oncology” on the IV pole that it hit me. We were in the cancer ward…my baby had been admitted to pediatric oncology and that meant she might really have cancer. CANCER. After all the lights were turned out and Clara was fast asleep, I laid down on the couch bed by the window and cried…sobbed. I had no idea things were going to get worse or I would have saved it.
They did the test on Saturday, but Jason couldn’t start to make his way home until we had a diagnosis. On Sunday we got the test results back and then we knew. Clara had Acute Lymphocytic Leukemia, ALL. Her bone marrow was 75% leukemia and only 25% red blood cells. She would need chemotherapy, and in order to do that they would need a port placed in her chest near her heart, which required surgery.
The hospital communicated the diagnosis to the Red Cross and Jason began his long journey home on Monday, the day Clara was to have surgery.
The surgery did not go well. I knew it hadn’t gone well long before they came out and told me. I could feel it, something very real that does not have words, but speaks to the depth of the connection between mothers and their children. They couldn’t stop the bleeding. They had sedated her so she couldn’t wake up and move. They had packed her chest and given her a blood transfusion as well as a platelet transfusion. She was to be admitted to the PICU. They allowed me to go back and see her but told me not to touch her because they wanted her to remain still. As I stood over her, it became very real to me that I could lose her, perhaps that very night. I prayed. I prayed for God to save her and preserve her life. I had no idea if she would live or die, but peace washed over me and I knew that whatever happened was supposed to happen, and there was a purpose. Gratefully, she did live. The bleeding stopped. Chemotherapy started. Jason returned home to us on Friday, the day she was released from the hospital.
For two years and three months, Clara underwent chemotherapy, large doses of steroids, numerous procedures, many hospitalizations, and survived. She survived. We survived.
Cancer changes your life. Forever. Whether you are the person with cancer, or the family and friends of the person with cancer, it changes you. No one who hasn’t witnessed cancer up close really understands that in order to kill the cancer they have to nearly kill the person. Not all of the children we met in the cancer ward were given the gift of survival, and I think of them and their families often. None more than little Kayla. When you see a six foot five, three-hundred-pound biker covered in tattoos literally crumble to the floor with grief outside the room where his little seven-year-old girl lay in a hospital bed taking her last breaths, it changes you. You understand life a little better, and you understand what it really means to die. Kayla was loved and cherished, and will be forever missed.
This year, Clara celebrates ten years in remission. TEN YEARS cancer-free. My heart rejoices over every single one of those years, years I often wondered if I would have. I am grateful. Truly, truly, grateful. I know parents whose time with their children has been cut short by death, and my heart hurts for them, but I don’t know their pain. I only know that it is greater than anything I have ever experienced. I know that because I know how badly I hurt as I stood over my baby knowing there was a real possibility that she would die, without actually losing her.
Every day is a gift, that’s why we call it the present.
Hug your babies a little tighter today and give thanks for the present, I will be hugging my birthday girl.