Life with leukemia

With a jerk,  Isabelle looked up at Ashley and I wide eyed, and fell limp. Handing her inert form to nurses, Ashley and I wound our way through tubes and wires out of the room. Waiting for her to wake up later inspired prayers and trust in God. 

Yesterday marked the beginning of a renewed, intense phase of chemotherapy. Friends tell us this stage induces nausea, vomiting, weakened immune system, and hair loss.

The day begin typically with port access. Isabelle gets weighed in and her height measured. Then she endures cold cleaning swabs on her chest. With face masks all around and the shirt pulled up over Isabelle’s face a 1 inch needle gets stuck into the metal port beneath her skin. Two vials of blood are drawn and rushed to the labs.

Packing up and heading out the door we rode the elevator to the echocardiogram lab. 

Waiting to be seen, Isabelle  shrunk onto Ashley’s lap. It seems every week Isabelle shows up with energy larger than life. The longer we stay at the hospital she grows smaller almost intimidated by the size of the building and the number of people working with her.

After a few minutes a talkative nurse called us back. Setting us up she told of a time before in room cable tv. Then she had every Disney movie memorized from the number of times she had to listen to it throughout the day treating patients.

Essentially Isabelle received an ultrasound on her heart. The doctors wanted to both look at her heart to assess its health and establish a baseline. Apparently some of the chemotherapy can affect her her heart.

I had to keep reminding myself I wasn’t looking for a baby in the grainy image on the screen

20 minutes later we cleaned the gel off Isabelle’s chest and made our way back upstairs

Our doctor shared good news with us. Isabelle’s blood counts all clocked in at relatively healthy numbers. Now going forward we essentially get weekly treatments for the next three weeks depending on how her immune system reacts.

Isabelle insisted on walking to the next stop. We made our way to infusion room 14 for the first of her two chemo infusions. Isabelle and Ashley read books while infusing hazardous chemicals.

20 minutes into infusion a nurse walked in covered in a yellow cloth. Time for a procedure!

I carried Isabelle into the procedure room through the crowd of nurses and doctors preparing. While the anesthesiologist quizzed Ashley with all the regular questions I answered questions for the nurse. 

Isabelle just tried to color to distract herself. Unfortunately the nurse first wrapped a sensor around her right pointer finger. Then, the blood pressure cuff went around her left arm. She gave up on coloring. 

Three more nurses read off her vital info and the doctor got to work. First the clear medicine went through the tubes. Then the milky, white medicine went in. Isabelle watched all of this then turned with a jerk looking at Ashley and I. Falling limp, she shut down. 

Ashley and I stole out of the room not wanting to watch the lumbar puncture. 15 minutes later they finished and we came to the recovery area. We snacked and talked for half an hour beside her bed before waking her up.

With almost surprising speed our day officially ended at Riley. We packed a sleepy Isabelle into the van and left for home. Exhaustion describes the end of such a day.

Arriving back in Terre Haute we picked up our two-week steroid regimen for Isabelle. We expect her appetite to go back through the roof and her mood to vacillate a lot.

On the way home Ashley picked up a migraine which unusually knocked her out the remainder of the evening. As I write this the next day Ashley feels much better.


Fighting a severe sickness such as leukemia drains you on so many levels. The exhaustion of walking through treatment with your child defies easy explanation. Even with a great prognosis and good hope for the future. I remain grateful to God for his strength.

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