Waiting

5:45 AM my alarm clock started ringing. I leaned over, shut it off, then mumbled an apology to Ashley. As soon as my head hit the pillow the thought struck me.

 “Wait a second! I have to get up now! Today we go back to Riley.”

Apologizing again to Ashley I nudged her awake and we staggered into our day.

6:15 AM Ashley woke Isabelle who unfortunately soon wanted to eat. With a scheduled spinal tap today, our two-year-old had a fasting order. Of course as luck would have it, today she woke up hungry! We spent the next three hours playing the distraction game. Much “Moana“ was watched.

7:40 AM we actually exited the highway with plenty of time to make our appointment. Sadly, 70 miles failed to get us an escape from trains. 1 mile from the hospital we waited 15 minutes on a train. We thought we left that in Terre Haute!

8:20 AM We accessed Isabelle’s port and started attempting blood draw. Last week I visited without Ashley and spent hours trying to get blood.We thought Ashley was the secret… Turns out even with Ashley it took a while. Finally, with much tears and waving of Isabelle’s arms we finally got blood  flow.

Her port problems stem from her prescribed steroid regimen. This causes weight gain. This extra weight can place pressure on the port tubing beneath her skin. So, the nurse easily pushes fluid in, but getting something out presents a challenge. She has problems with her port.

9:30 AM we got blood counts. It turns out while she doesn’t need platelets or hemoglobin her ANC count remains too low. ANC stands for Absolute Neutrophil Count. This represents the amount of baby white blood cells Isabelle has. 

Every normal person‘s body constantly makes white blood cells. Leukemia causes a mutation that keeps new white blood cells from forming and arrests the growth of others. Basically, leukemia causes her body to put out useless mutant white blood cells in mass.

So, the process for attacking leukemia involves killing these mutant white blood cells. We also kill the good white blood cells. This means Isabelle‘s immune system remains chronically compromised/weak.

11:30 AM we finished meeting with the doctor and hit the road!

Conclusion

Now we wait another week hoping her counts go up. If this happens we will try another day for her next round of chemo. Living one day at a time fighting this thing.

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