We had to spend a few (by “we” I mean Rachel and Trey) nights in the hospital at the end of last week due to Trey having a reaction (mild) to getting platelets. It was our first stay at Children’s Hospital of Pittsburgh (an amazing facility and staff) in about 2 years. It spurred quite a few memories that I jotted down here for you to once see peer a bit into “our world.” I acknowledge that is isn’t really just about cancer or children for that matter. Anyone battling a long term illness can identify with many of these. Further, I also sadly acknowledge that some of you would have loved to have their battle last longer.
1. You know the smell of the hospital and when you smell it you think, “I’m here.”
2. You’ve had an awkward encounter with an Amish person (at least in Pittsburgh).
3. The beep of the pulsox/IV/everything else tower drives you insane.
4. You know how to turn off the alarm on said monitor even though you’re not supposed to.
5. You freely rummage through the closets in the room to get supplies at home (not that we’ve ever done that and when we have we’re just saving the nurses time as they always give us whatever we need).
6. You have become sweet and nifty with a needle (syringe), more than your average addict.
7. You’re afraid that your kid has a fever so you hesitate taking his temp knowing that if he/she has one you are locked in to 6+ hours in the ER and a probable admission.
8. You feel a certain amount of privilege when the ER takes you right away ahead of everyone else…call ahead seating if you will.
9. You get used to the top floor of the hospital even though you have stayed on every floor possible.
10. You get annoyed when you are put on a floor that isn’t “yours.”
11. You have said to a doctor, “DON’T EVER TELL ME THE EARLIEST WE MIGHT GET OUT. TELL ME THE LONGEST WE MIGHT STAY.”
12. You’ve wanted to punch a resident (who knocks once as they fling open the door to your room at 6:00 am., waking your child for the day) right through the throat.
13. You’ve order your child’s meal keeping in mind that you are most likely finishing it.
14. You store up mini water bottles and random fruit like a famine is approaching.
15. You have more pillow pets and other stuffed animals than socks.
16. You know which hospital employees will tell you how they are doing and which ones could have a sword in their back and will always reply, “Just fine thank you.”
17. You’ve know the fantasy football roster of your oncologist.
18. You realize that some people that were close with can’t handle it and just stop your relationship.
19. You have friends you’d never have imagined and relationships with professionals that are oddly personal and intimate (no, not THAT way).
20. You’re used to having people look at you THAT way.
21. You learn how to knowingly nod to other hospital “regulars”.
22. You kind of stop caring about what your child eats.
23. You get as used to vomit as you did when they were an infant.
24. You don’t like scans both for what they are scanning AND the ordeal that they entail.
25. You stop counting minor surgery as surgery saying things like, “Well, they were barely under for that long. That doesn’t count.”
26. You have wept at the generosity of others.
27. You have had to rely on people more than you could ever imagine.
28. Your prayer life is different…way different.
29. You’ve used the term, “nuclear pee.”
30. You hear that your child’s pee and tears may turn red due to a certain chemo.
31. You’re kind of disappointed when they don’t.
32. You have nicknames for many, many, of the hospital staff (doctors, nurses, cafeteria, check in folks).
33. There is at least one professional (doctor, phys. asst, nurse, etc.) that you have made it known you don’t ever want to talk to you again.
34. You know the busy times for the elevator and wonder why they can’t dedicate one just for your floor.
35. You know all of the sneaky ways to get your parking validated.
36. You dread seeing a new check in person because your going to half to give them info whereas the regulars just know you and hand you your sticker.
37. You have said in a very alarmed voice, “DO NOT RUN” when they are attached to the IV tower as you walk to the playroom.
38. You don’t freak out when they snap the line and you have to go back to the room until the IV team gets there to fix it.
39. You make deals with your kid as to who gets the computer and who gets the tv.
40. You’ve looked outside and wondered, “I wonder what that’s like?”
41. You know the minute you use the bathroom some professional (probably a doctor) is going to walk in to the room.
42. You are elated when your favorite nurse is on duty.
43. You are crushed when you get a nurse you’re just not a fan of.
44. You have sent a super terse email to your oncologist, begging for help with other doctors who are caring for your child.
45. Your heart has broken when you see a family with a child coming in for their first round of chemo.
46. You get to a point when your oncologist (and staff) know you and know how to talk to you, when to talk to you, what you like, what you don’t like, and when to just leave you alone.
47. You play games like “which elevator is going to come first” and “which way do I go (before the elevator doors open).
48. You know not to dress for summer…in the summer.
49. You know all of the ways to get a water proof bandage (and the glue residue) off of your child.
50. With every mention of a future holiday or birthday you think, “I wonder if they will see that day…”
My son has a congenital heart defect – no where near cancer. But… He is now 36 years old. Back then, the doctors just did not have the technology they have now. I truly believe he is here because of the prayers lifted in his behalf. That being said, I can relate to most of your list. Always praying for the entire Mitlo family (and all others in your situation). May God continue to bless you and keep you. And know that you are doing an awesome job!
I have no doubt that you and your family have experienced many things that the rest of us can scarcely comprehend. As per #50, the never ending uncertainty regarding the future has to be the one that hangs most heavily upon you. Despite all that has happened during the past 6 or 7 years, you are all still standing. Praise God for the fact that, despite all the pain and suffering, He has blessed you with whatever wisdom, strength, courage, etc. you have needed. I somehow feel that I am a better person by virtue of having continued to follow your remarkable “story.” LOVE and GOD BLESS