Skip to main content

7/23/17 Reflection on month 2

As I am laying here in the hospital with Wil it is hard to believe how normal things feel. Like...YIKES! We stepped off the elevator into the ICU and all the ladies were like "Hi Wil." We knew them, they knew us. We went to our room, we knew everyone, we knew how to turn the couch into a bed, we knew where the ice machine was and the snacks, we knew how to call for meals and nurses, where the clean linens are and where the dirty linens go and how to adjust the beds...weird. NINE weeks ago we didn't know. NINE weeks ago all of these simple things were cause for additional panic. NINE weeks ago I had never heard of the Consolidation phase of chemo. NINE weeks ago I didn't know that Lumbar punctures gave him migraines. NINE weeks ago I didn't know that 6MP made him spike a fever. NINE weeks ago I didn't know that chemo drug vincristine was made from the mustard gas that the Nazi used in WW2...NINE weeks ago I didn't know what I didn't know. T-cell acute lymphoblastic leukemia.
I would have to say the physical things don't feel as much of a crises as they did NINE weeks ago (most of the time)... we have learned that a lot of chemo and the horrible things it does to his body is "let's just wait and see how he does." Not everyone gets all of the horrible side effects of chemo, but no one escapes them either. So we wait and we deal. We expect the best and plan for the worst.
We warrior on.
Month two is definitely more about the emotional pain, don't get me wrong he has had some serious physical pain in month two; migraines, 105.5 fevers (didn't know a thermometer could go so high), crippling pain, not walking again, but we lived through the physical pain of month one, pain was not new... the newness of the emotional pain is what hits you about month two, have one good day and suddenly you are reminded of what you are missing... missing your soccer team and their championship games, the hotels, the soccer moms and the soccer dads, your coaches, your trainers, your friends, the pool parties, the vacation, the beach, the late night parties, the float trips, the long hikes, swimming at Aunt Sara's throwing your cousins in the air, the plane ride to Arizona and Aunt Chutka, hiking Camelback (while seeing how bad you can lap your mom), soccer camps and talking to college coaches, working on big Grandpa's pond, movies, fire pits, BBQ, a dozen+ graduation parties, long runs, days at the gym, pick up basketball games, wrestling, boxing buddies, crazy trips to Walmart that make you snapchat famous, exploring caves, late night Steak n Shake runs, basement parties, fireworks, concerts, girls ... (I could keep this list going for a very, very long time.)
Your summer of being 16, that magical summer where a car gives you freedom. Where you don't know what you don't know.
That's what's new that sucks about Month two of cancer. Will anything ever be the same again? Will this awful heaviness ever leave? NINE weeks...we knew and it's new. On to month three...

Comments

Popular posts from this blog

Breathing is NOT optional-Saturday

Saturday update: Wil had an allergic reaction last night and stopped breathing. The medical team and  Kristen Josephine  were amazing they bagge d him and gave him shots to open his airway. It was terrifying. He is shaken but doing ok. Very grateful for the amazing staff at the PICU.

Happy 17th birthday, Wil!

Happy Birthday,  Wil Ohler  ! I am so lucky to be your mom. You fill our lives with laughter and show us what real strength is. Yesterday they celebrated with him at the cancer center when he came in for chemo. To say that you should never take life for granted has taken on a whole new meaning. I ask for prayers for the little ones who won't be celebrating another birthday. Send their families your light and energy for strength and peace. For Wil we ask that you do something today for someone else who will never be able to pay you back, spread kindness, love, and of course laughter. # wilswarriors   # wilwins

Make A Wish soccer game

It has been awhile since I updated here. It is much easier to do from Facebook if you can follow his story there. CLICK HERE Wil has been struggling with the effects of chemotheraphy. The chemo has not been kind to his stomach, gallbladder, liver, or head. The good day was his MAKE A WISH faculty soccer game. March 15, 2018 Our family is humbled by the support of Wil and the Make A Wish foundation. Thank you from the bottom of our overflowing hearts, we love being a FLYER! -Thank you to Lori Condellire, Susan Dooling, & Beth Johnston for sharing pictures! A few members of the  StepUp  of St. Louis Teen Coalition presented a check from their budget for $100 to be used for Wil's Wish fundraising at the soccer game to day! So cool to see these kids in action. Way to go  Truman Middle School  for organizing such a fun afternoon.  # wilswarriors   # stepupstl