6 AM

Alarm clock rings and Ashley immediately shushes me. She whispers (to a half deaf man😀) something about Isabelle. I make my way through the dark to find Isabelle curled up on the floor behind the door in our bedroom. Facedown, butt stuck up in the air she wandered into our room and fell asleep. I carried her this way back to her room and shut the door. The day just began.

6:30 AM

We finished loading the car and packing a sleepy Isabelle for the trip to Riley. With a prayer we left.

8:00 AM

Ashley checks in to the hematology/oncology center while I parked the car. Loading down a wagon with a day full of supplies I make my way through the hospital and received a call from Ashley. We forgot to apply port numbing cream. We always do this half an hour before accessing. My leisurely stroll transforms into an athletic walk.

8:30 AM

We check into a hospital room in the infusion center. Typically we just get a cubicle for our 1 to 2 hour infusions. Mercifully we got a room for our upcoming 10 hour day. 

Immediately they draw blood and plug-in the saline solution. Today we need to keep Isabelle very hydrated. Yet she must fast until her lumbar puncture. 

11 AM

We get called for the lumbar puncture. I don’t think I will ever get used to seeing my daughter pass out into a drug-induced sedation. Ashley and I rush to eat a snack and use the bathroom. Two things we abstained from for the most part throughout the morning.

11:30 AM

Mom and Dad show up. They catch Isabelle coming out of procedure fast asleep. So we grab lunch from the cafeteria while Ashley waits for Isabelle to wake.

 I ordered a hamburger with fries. Ashley requests a spinach salad and a kale smoothie.

12:30 PM

Isabelle’s hydration levels reach the correct point. Isabelle’s blood counts come back healthy enough for chemo. (Funny phrase to write.) we confuse her chemotherapy over a one hour period.

1:30 PM

We plug-in post chemo saline solutions. Four hour timer begins. Mom and Dad drive home. 

3 PM

We take a walk to the cafeteria to get an afternoon coffee. Walking a two-year-old with an IV pole presents a challenge. We get plenty of smiles, so it’s fun.

We return to our room to find a pile of boxes. We get to leave her port accessed for the next three days. She gets chemo therapy at home through her port and orally. The boxes contain supplies.

Ashley and and Isabelle take a nap. 

6 PM
We finally leave our room. Stopping at Panda Express for dinner the cashier asks me if I want to donate money to Riley. I laugh thinking of the $105,000 bill my insurance just paid. 

7 PM

We pick up Christina from one of two good friends who managed caring for her in the last day. I love getting to see her again. Leaving that friends house we drive past the home of Matt and DeAnne Carver. I praise God for the miracle He continues to work in the life of baby Silas and  our little Isabelle. 

9:30 PM

We finally get the girls down for the night. Exhausted, we clean up our pile of supplies brought in from a day at the hospital.

10:30 PM

Ashley realizes the hospital under informed how complex at home chemo infusions were. I quickly realize I need to run and get chocolate ice cream for her.

11 PM

I return with a peace offering of chocolate from Kroger. Ashley finishes reviewing all the information we took in during the day. I love how diligently she works to take care of our little goose.

11:30 PM

Good night


Yesterday so thoroughly exhausted me I chose to write it’s blog the night after. Yet I can’t close yesterday’s story without sharing what I saw walking out of the garage. We typically park on the fourth story. Exiting the elevator on our floor I wove through a maze of dozens of Riley wheelchairs left behind. Humbled, I thank God our girl walked out of here today. I praise God for such an incredible place to go.

4 thoughts on “Marathon

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  1. Keeping your family in my thoughts and prayers. Whenever you post about going to Riley and the long hours spent there I have never seen you write about anything negative, just the joy that Riley has brought to you and your family. Riley is an amazing place and helps so many families get through their toughest battle. Your little girl is going through so much and seeing that last picture really put a smile on my face. So many ill children don’t get to walk out of the hospital the way your daughter did. Pulling that little red wagon. Most ill children are sitting in the wagon being pulled out. This just shows how brave your little girl is. Keep on fighting little goose. FTK (For The Kids!).

    Have you visited the Child Life Zone? If not you should definitely visit. Little goose would love it(as long as she is strong enough to enjoy the many activities) and so would Christina.

    P.S. What a loving husband you are. Going out at 10:30 to get your wife chocolate ice cream. That is so sweet of you.

    Liked by 1 person

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