There are few things that can be as frightening as a child that has an unexplained fever of 102-103. We endured the fever and embraced a new fear.
August 25, 2012 our three year old felt a little warm. Nothing to worry about yet, just slightly warm to the touch. I went to sleep unconcerned, thinking that maybe, even, I was imagining things.
The next day was a Sunday and our baby was boiling hot. We had no Tylenol in the house and couldn’t find our thermometer so Chris borrowed both from a friend and we began to give Spencer Tylenol and wait for the fever to come down. Spencer’s temperature was 102. Now, I am of the mindset that a fever needs to break on its own and that Tylenol only delays that from happening. We gave him Tylenol and waited to see what the next day would bring.
Monday brought more of the same and a phone call to his primary care physician and an appointment that day. His regular Dr. had no spots so we went in and visited with another doctor. She took his temperature, checked his ears and throat, and because his throat was red swabbed it for strep. She told us that if he was not better in three days to come back in.
Tuesday and Wednesday passed the same way. High fever, lethargic and miserable Spencer. He wasn’t eating or drinking, he was burning up and all he wanted was his mumma. Tuesday we had to bring our oldest son to the airport so he could fly home and all I could think about while I was holding my fevered three year old was the final scene in Rise of Planet of the Apes where a pilot is infected with a lethal virus and unknowingly carries it all over the world. Of course, I really wasn’t worried that Spencer was contagious, because with seven people in the house at the time he was the only one with these symptoms.
Thursday came and it was the day that I had marked in my head that we would head back to the doctor if he had not improved. He hadn’t. Despite baths, fever meds and time Spencer was still bouncing between fevers of 102 and 103 degrees. Spencer and I headed to the office and found out that the strep culture had not produced anything. The doctor told us that there was a possibility that this was an infection in his blood since she couldn’t see anything else in his ears or throat again. She was sending us to the lab for blood work and to radiology to make sure he didn’t have pneumonia or anything else in the lungs.
Spencer was miserable already and then had to get stuck in the arm for bloodwork and held in specific positions for x- rays. Neither of us had been sleeping well at all for the past week so we cuddled up on the exam table and took a nap together while we waited for results.
The doctor returned in an hour or so, though it felt like minutes, and told me that somehow, Spencer’s blood had clotted before it could get analyzed. I was thoroughly confused by that because there is stuff in the vials to prevent that, but she told me that we needed to go have his blood drawn again because they couldn’t use that sample. In the meantime, she told me, he was going to get an antibiotic in each leg in case it was an infection. After this blood draw, we could go home and she would call with the results.
Even after not eating or drinking for a week, Spencer was remarkably strong. He needed (for both blood draws and the antibiotics) a couple people to hold him down. That sucked. Big time. As soon as they called his name from the lab again, he started screaming and flailing. Smart boy. I watched as they put a rush status sticker on Spencer’s blood vials and then we thankfully left the office. We had been there for three hours. On the way home, I called my Mom and my Memere to keep them posted on what was going on and that we still knew nothing. We stopped by Memere’s house and my aunt and grandparents remarked on how pale Spencer was and how he just looked like he felt sick.
We went home and the boys got off the school bus. A half hour after they were home, we had been gone from the Dr.’s office for two hours. When we left, I was told that the results should be back in an hour or so. I did a great job waiting patiently…really I did. But I needed to find out what was wrong with my son. I called the Pediatricians‘ office and was put on the phone with the doctor we had seen.
“Have you gotten his test results back?”
“Actually, we have. Remember how I said that the blood sample clotted? There was a mistake. There weren’t enough red blood cells and white blood cells in the sample for it to look right so the lab had thought that the sample had clotted. The second sample looked exactly the same. I have been on the phone with the Barbara Bush Children’s hospital in Portland. It is right at Maine Med. I am on the phone with a hematologist there and I am trying to set up a room for you there. I am going to call you back in a few minutes, is that okay?”
“Yeah. Yeah. I’ll talk to you in a few.”
Chris took off with Austin and Kayden after I had told him we would be going to the hospital and I had called Memere to see if she would watch the boys. While he was gone, the pediatrician called back.
“Okay. I just got off the phone with the hematologist and they are expecting you. I need you to pack for a few days. You are going to be there at least through the weekend.”
My mind was racing and I was having to work to focus, to pack and to process what was going on.
“Can I ask a question?” I couldn’t breathe.
“Do we need to be worried about Leukemia?”
She sighed. “Honestly, yes. I’m sorry to have to say that, but yes.”
I don’t remember the end of that phone call, really. I also barely remember packing. I think I called my mom. I know that for some reason I anticipated having time in the hospital to write so I brought all my stuff for my novels. I packed stuff for Spencer, but couldn’t find his shoes or socks. I grabbed all our diapers but I think I forgot wipes. I know I brought Motrin and Tylenol…yeah…to the hospital. Because pain meds are difficult to get in HOSPITALS. (duh)
Chris came home from bringing the boys to my grandmother’s and we flew to the hospital. I do not condone speeding. Which is why I was begging Chris to slow down the whole way to the hospital. He didn’t.
I was calm. The whole week, little sleep and all, I was extremely calm. I was in Mom-mode. The one where there isn’t a whole lot of thinking clear, concise thoughts, mostly enough to function. Nothing is absorbed, little bits remembered.
We arrived at the hospital in one piece (thank the gods) and a while later were brought to our room. We met the hematologist that I had been told about and he ordered an IV and blood-work. The results came back and Spencer had a transfusion that night. He received antibiotics in his IV and a ginormous amount of saline.
Chris and I agreed to switch off on who slept on the couch and who slept with Spencer.
That night, the hematologist told us that we were looking at three options. The first, and most likely, was Leukemia. The second, less likely, was A plastic Anemia. The third and least likely was a virus in the bone marrow. They were all curable. He would be okay. He needed a bone marrow draw and at the same time they were going to put a PICC line in his arm for antibiotics or transfusions or in the case of the first option, chemotherapy. My head was still spinning.
We met a young girl named Emily. She is a beautiful smart thirteen year old with Leukemia. She made a sign for Spencer’s door. She included the words “Stay Strong” on it because those words are helping her on her journey. Her birthday is the same day as Spencer’s exactly ten years prior.
The next day, Spencer went under anesthesia for his procedures. His last words as the medication took hold were “I want Kokit (chocolate) Niwwwwwwk. (milk)” and then he was under. It sounded like a cartoon where a toy’s battery dies. It was pretty amusing, actually.
When the hematologist was telling us about what the options were, I asked a question that hindsight tells me that though an intelligent question, maybe I was foolish for asking. “If he has Leukemia, you will see the cells in his blood, right? That will be the first result you get back, right?” After debating the simplicity of reading the results, he acknowledged that, yes, this would be the first result.
In some ways, I needed to know the answer. In others, I could have had a few more minutes of ignorant bliss had that question not been asked.
At six pm, three hours after we returned from Spencer’s procedure and were back in our room, the doctor came to us and told us that he had results. I asked if he had a diagnosis. He said he had a 99% diagnosis. I ran to the smoking area to get Chris and we went into the little room (never a good sign to go in a little room for privacy)
The doctors told us that Spencer has Acute Lymphoblastic Leukemia. I cried. He said that about 4,000 kids a year get diagnosed with Leukemia. I must have misheard. “I’m sorry. How many?”
“About 4,000. I know that sounds like a big number-”
“NO. It doesn’t.”
I got myself together. He said “Cancer.” I cried again.
I asked how does some one get this?
“Well, its not hereditary. It’s not contagious. Honestly? Bad luck.” shock
Thanks to my Psychology 101 classes about ten years ago, I was narrating in my head the responses as I was going through the different stages of grief. I was literally sobbing and thinking of getting up to punch the door and a little voice in my head was going ‘yup. that would be anger’ I remember bargaining, anger, questioning why…the whole time I am gasping for breath and pouring tears out of my eyes. I am pretty sure that I had a slight mental breakdown because shortly after that I told the people in the room that I was going to go take my meds because I hadn’t taken them and I was going to go hold my baby. I think I remember repeating that a couple times before I actually left.
Before I could tell my family or friends that were in the room and hanging out with Spencer, they knew. It wasn’t difficult to see it in my face. The snot and tears were probably a good indicator.
The next morning was hard. The first thought that I had when I woke up with Spencer was “my baby has Cancer.” That hurt. A lot.
After that, I remembered that there is over a 90% cure rate. I remembered that we had a plan. That we could attack this and win.
Spencer had another transfusion Saturday night and then Sunday was his birthday. His fever was gone on Friday. He was starting to perk up. His color was coming back.
After we got his diagnosis, I went to talk to Emily. I asked her if Leukemia hurts. She answered honestly that it does, sometimes. I appreciated that I could ask her what I knew I couldn’t ask my three year old. I also appreciated that she was honest.
The next two weeks consisted of vitals being taken all the time, lumbar punctures, chemotherapy and IVs. There were also wagon rides, rides on the IV poles, going to the “painting room” (the play room) and showing everyone that visited his wormie house. (I was amazed and impressed that he was allowed to bring that into the hospital)
There were friends made, both staff and patient. There was much more to this hospital stay that I will tell about another time. For now, I wanted to share our story of discovery. It hurts sometimes. It is hard sometimes. But the unimaginable has happened. And we are okay.
- Bone Marrow Cancer & Primary Bone Cancer Symptoms & Types (cancercenter.com)
- Pagano diagnosed with leukemia (msn.foxsports.com)
- Your Baby’s Medical Needs (enfamil.com)
- 5 things that I want my patients to know (kevinmd.com)
- 3 Most Common Mistakes: Pediatrician Visits. Pitfalls to avoid with your child’s doctor, on Babble.com. | Babble (babble.com)