Mommy's Time Out Magazine June 2017 - Page 17

I wish I could say we had an uneventful May. But unfortunately it was anything but uneventful. Without boring you with too many details, McKinley spiked a VERY high fever and we were admitted for 3 days. Could this fever of been avoided? Quite possibly. Had she been given the immunoglobulin blood product that she was needing 4 days prior (but it had to be rescheduled due to the fact that United Healthcare dropped Johns Hopkins All Children's Hospital from their in network benefits, the entire hospital stay is speculated to have been avoided as she would've been able to fight off whatever virus this was. Not to mention that the hospital stay isn't the only inconvenience. McKinley HATES going to the Emergency Center...she calls it the "scary All Children's" and refers to the clinic (where we go weekly) the "regular All Children's" so its very traumatic for her. Her port STILL isn't working (which is another sad, long story) and she doesn't know the ER people like she does our wonderful nurses in the Hematology/Oncology clinic. On top of being hospitalized, that also meant she was placed on a chemo hold to give her body time to recover from this virus. So another week with no chemo. This is her 9th week without receiving chemo in this Maintenance phase of treatment and we were told at her last hold that if she was placed on hold "one more time" the "Leukemia team" would get together and discuss adding on a cycle of Maintenance. Now of course I want what's best for my sweet girl but I can't help but think IF she received this blood product and IF she could've fought off this virus, we wouldn't even be in this predicament. It makes me irate and infuriated. I have spent so much time dealing with insurance, news outlets, news publications just to spread the word and fight for these kids to get the care they need. I'ts completely exhausting. We find out this week if another 3 months will be added on to her course of treatment (which includes an additional surgery and many more chemotherapy drips). Please keep her and her team of doctors in your thoughts and prayers as I want to go the direction that is best for her.

May 28th was McKinley's 2 year diagnosis date. TWO YEARS we've been living this crazy unknown scary life. Its gone so fast yet so slow. She has lost her 2 & 3 year old years of life to this disease yet at the same time she doesn't know any different. If nothing changes...she will be done with treatment in August 2017.

Lastly, our annual Love McKinley, Inc Dinner and Golf tournament are right around the corner. Please check out for more info. And as always, please continue to send thoughts and prayers her


Thank you.