Its sneaky and fast this disease.
For nearly two weeks, Isa felt a tummyache. She kept pointing to just under her ribs. I know now that this fullness sensation, is a classic sign of leukemia. The spleen and liver start to enlarge as they break down the damaged cells. Trying to understand what a three-year-old feels makes your head spin. How many of us with children have had them say, “My tummy hurts.”?
On New Year’s Eve, I watched from the dining room table as Gg, my oldest daughter was just about to carry her sister piggyback. Of course G is only 4, Isa is 3. I couldn’t catch them in time, as the lot of them fell backward onto the concrete floor.
Isa was immediately sore, and started saying that she couldn’t walk. Albeit, this was quite dramatic, but never-the-less she wasn’t moving. So, who wants to be in the ER on New Year’s Eve? I gave her some children’s pain killer. She slept and watched TV.
Over the next several days, she seemed achey and sore. All of this seemed consistent to me with a fall, muscle soreness, and all that type of stuff. I was still monitoring her condition.
She had a chiropractic appointment. She seemed a little more uncomfortable than usual, which just validated my theory that she was sore from the fall. He did not notice the enlargement of the spleen or liver because we didn’t mention those symptoms.
Then on Sunday, January 11, she had a fever. Also, a common symptom. I watched her fever throughout the day, taking it several times to document its exact path. Children get fevers when they are fighting something, right? Right. Typically I take a temperature once and then just watch it. This time, I took it at least four times, documenting the time and the amount.
Monday, I called her pediatrician, made and went to an appointment. I told her the symptoms and the fever information. I thought that we’d be sent home with a prescripton for an antibiotic for a bladder infection.
Instead I went home with a little girl, with a snoopy bandage on the spot where they took the first amount of blood that would lead the doctors to leukemia. Her x-rays from Monday demanded that the doctor order a CT scan, to rule out any focal lesions.
The nurse at the hospital seemed a little nervous as she inserted Isa’s IV for the contrast used in the scan. (She got it on the first try!) My little girl getting an IV. To date, I’ve never had an IV. Her tiny body, stretched out on the moveable dias that slid back and forth through the stargate-like disk, was calm and somewhat serene. I held her hand and she held the bear that the nurses had just given her. She even looked up at me and smiled. I told her that the reason the cameras were so big, was that they were old fashioned. Not like mommy’s new and tiny camera. She seemed to buy it.
Tuesday night the doctor told me by phone that she was not sure whether to send her to oncology or gastroenterology, that she would call in the morning.
Isa woke up on Wednesday in a lot of pain. On Tuesday she tried to crawl to my room. On Wednesday she could only lay in bed and scream, “mommy” over and over agian.
Papa & I had a bag packed for an overnight. I had no idea that I’d need five to seven overnights.
We arrived at the Outpatient Center on Wednesday just before 12:30. I know this, because Papa dropped us off at the door, then went to park. I paid the parking garage attendant that night. 8 hours and 41 minutes later…with only one daughter in the car. The younger of the two in her hospital bed, wearing pink polar bear pajamas. With an IV in her tiny right hand.
They make special equipment for children. She had a sort of a soft cast wrapped around her IV insertion point. Her hand taped to a board. They litter the area with stickers. The stickers started arriving around 1 or so, as she was getting yet more blood drawn. The hematologist/oncologist, wanted to view the blood and get an updated CBC.
Dr. Kumar was the first one who told us. It is definitely leukemia. Your heart stops. You practically say out loud to yourself,
“pay attention to what this woman is saying. This will be important. Do NOT drift into oblivion. Stay standing.” because it’s mind-numbing.
The First Bone Marrow Aspiration
The second step for Dr. Kumar, and the team, is to check the marrow for blasts. Isa had 4% blasts in her blood. That crafty Dr. Kumar, had said, we will need to check her marrow for blasts, as if the possibility that maybe we wouldn’t find them existed. She is very good at her job, telling parents must be an art. After the test, she said, that with a 4% saturation in the blood, the marrow is usually 90 to 96% blasts. Blasts are bad.
Not all bad, because they are the precursors to what we call White Blood Cells. But for all intents and purposes, in this blog. Blasts are not a blast.
I won’t even bother to describe the lumbar puncture, but I imagine it would be somewhat like a circumscision, only with a nurse, me and a doctor holding a child with morphine /versed infused blood down to a stretcher, instead of being strapped to a circ-board. Needless to say, it isn’t painless.
The morphine did make for some funny 3 year-old trippy talk though. She was loopy and cute.
The rest of the almost N:INE hours was primarily moving to her room. Setting up camp, in room 5140, and for those of you do numerology, check out the number. It gives me hope.
The only good part about this day, was walking into registration, where my Aunt was waiting for me, unannounced. She patiently read more books than she has read in a long time to my nauseated eldest. After some chocolate milk and crackers Auntie, found herself wiping puke off the front desk, because G had decided to hurl. I forgot to mention that on the way to the hospital we had to stop and clean up her vomit.
That in a nutshell is diagnosis. Right next to Isa, was another little girl, I don’t even know her name yet, who was just a few months younger that Isa. I recognized the look in her parents eyes. She had already had one blood transfusion and she couldn’t get the port surgery because she has had an infection in her arm. So I count my blessings.
It could be worse.
1) Pack for a week when they send you to the hospital
2) Prepare to sign lots of papers about protocols and studies.
3) Know that it gets better