Tuesday May 11
Nicholas has a white blood cell count of (WBC) 0.19!
The numbers are not even close to normal (4.5) but Nick and I could have a party! In a husky voice because he hasn’t said more than a few words in days and days, Nick spoke on the phone with his Dad and brother.
“Dad, I got counts!”
I’m told there may be zero numbers tomorrow but last night I begged God. It feels like we’ve had a miracle.
Still, the fevers rage on. So many scans and tests and no one can tell us why.
I breathed a huge sigh of relief yesterday when my Mom and Len arrived for a visit.
I sit with the other mothers in the hallway outside of our hospital rooms. Robynn, Heather, Shelley and I sip a cup of coffee and watch the activity of the ward while our children sleep.
This morning the mood is light and that may be due to Alan the nurse, the Patch Adams of 3B, wearing a blown up surgical glove on his head like a rooster’s comb. And like glasses he wears plastic medicine dispensing cups with grapes jiggling inside them. You know which room he is in by the child’s giggles spilling into the hallway. The same nurse who had tears on his cheeks when Nicky M died.
Sitting in her chair, Robynn wheels it over to Alan and says something. They burst into laughter. She’s just as silly as he is.
Her infant daughter Tianna is receiving treatment for leukemia. It seems the world has tilted when children lie in hospital beds getting chemotherapy by tubes sticking out of them. Then it’s positively weird when in a hospital crib is a baby, Robynn’s baby, with arms tied so as not to pull the tubes out and she’s begging to be picked up, but Robynn can’t pick her up.
We cradle our cups and Shelley worries about her baby Adain. She tells us that chemo may cause problems when he is old enough to walk. He is trapped in a crib during treatment and shows signs of the debilitating effects of chemo. Before cancer Adain was rolling around on the floor, moving normally, but has since regressed in his development.
I thank God I can talk to Nick. He doesn’t understand, hell I don’t understand, but there’s some small comfort in helping him cope by saying to him, “Lie still Honey, it’s going to hurt but it will be over quickly.”
Heather just shakes her head. She can’t talk about Melissa right now. “I’m going to cry,” she says.
Down the hall I see the nurse Cindy. Dr. Derek told me she is brilliant and should become a doctor. Cindy has spent hours with me as I try to grasp the basic concept of leukemia and the treatments. She steers me in the direction of the library and other reference materials when my questions become more structured and I need more information.
I have a healthy respect for all of the staff. They have an incredible desire to be with these kids, or after working just one day they would never come back.
All I do is sit around this hospital and eat. Some of the Moms can’t sleep and can’t eat but oh no, not me. I’m a blob of fat. It’s making me even more depressed. I hate all this sitting around, it’s driving me crazy! The little bit of walking I do to and from the House isn’t enough.
Wednesday May 12, 1999
<0.10 WBC The counts are gone, just like they said. I could yell at someone today. I’ve got to stay focused and positive. My heart is bleeding.
Christina is a little girl with cancer from Vancouver Island. She and her mom are staying at the Ronald McDonald House. She wears frilly dresses with striped leotards and twirls every time I look at her. I call her “Christina Katerina Ballerina.”
The parents are in the kitchen at the House making meals for our families. Christina, eight years old and her mom are at the big island making sandwiches. Her mom’s hair is tangled and she’s clumsy, like she’s stoned and Christina is saying, “OK Mom, we need the peanut butter now.”
Tonight I was doing laundry at the House and the door to their room was open. Christina’s mom was sprawled face down across the bed beside an empty case of beer. Christina was upstairs watching TV. I think she is an old soul in a little girl’s body.
Thursday May 13
Counts are blipping again. 0.11. The staff is not excited but Nick’s smile is brilliant. Six days of Ampho and it can go on indefinitely. Once again I thank God that Nicholas doesn’t react to the anti-fungal drug!
Sunday May 16
Counts have not appeared since Thursday. X rays are showing a solid mass in Nicholas’ right lung. The size has not changed since it was discovered, so a surgery to investigate is not scheduled until Tuesday.
I can’t go there and think it’s a freakin’ tumor! What the hell would that mean? Do leukemia patients develop tumors? I’m waiting to learn the results about a recent bone marrow biopsy and lumbar puncture.
Mom and Len had their 5th anniversary on Friday and we went for a quick dinner just down the street. I need my mommy.
The fevers are staying away for periods of 12 –16 hours.
A big fat tear rolled down his cheek today while Nick slept. My sweet, brave little boy. I kinda get why people cut themselves. My chest aches so bad I could smash my head into a wall.
I passed on the information about blue – green algae to Dr. Derek. It claims to be immune system enhancing. He said he would let me know tomorrow if it’s a good idea.
We’ll try anything