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Showing posts from January, 2018

Cardinals Fantasy Camp 2018

"Sports is all I've known." - Wil Ohler Cardinals Fantasy Camp 2018 I will never be able to truly explain what this trip meant to me, but I do know what Wil misses most of all about soccer is the relationships. He is a very talented, competitive athlete who was/is wide open on most occasions. He loves everything about sports and soccer in particular. He has more random sports stats and facts in his head than should really be possible. But what he misses the most is the bonding (laughing, jaw jacking, rough housing, inside jokes, etc) that happens when you are part of a team. He just didn't really know it until it was gone and he got to have a small bit of that back on this trip. I will be forever grateful to Dr Rob and the Cardinals, every former Cardinals legend in attendance and every camper who attended who ALL took time to give Wil words of encouragement (as well as donate lots of money for research for teenage Leukemia). A few things about traveling with a c

Post Cardinals Camp

Wil had a great trip to the Cardinal's Fantasy Camp, but he fell asleep last night on the couch at 6:00pm and slept until 8:30 this morning!

Sneak Peak Cards Fantasy Camp

Wil had a good day yesterday. He’s been asleep 11 hours and counting! I am so grateful for amazing athletes sharing their stories of courage and humanity with Wil (more info on that in a few days). And so proud of this young man who always, always puts his best foot forward no matter how crappy he is feeling, plus he picked flowers and brought them to me  😊 . He has a rough go of it but always inspires me  ❤️  and finds a way to make me laugh and gives me plenty of things to think about. My heart is happy when I see him smile.  # wilswarriors # cardsfantasycamp Also here is the FRIENDS OF KIDS WITH CANCER FLASHBACK FRIDAY Click HERE This  # FlashBackFriday  is dedicated to our 25th Annual  Friends of Kids With Cancer  Fashion Show! We would like extend a very big "Thank You" to all of our sponsors, boutique vendors, volunteers, and most importantly our survivor/ patient models for bringing this event to life!  . Because of YOU we were able to raise a record b

Nurse's letter to her cancer patients after she is diagnosed

https://herecomesthesun927.com/2016/11/14/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/ Here is my summary... -actually hearing the words "it's cancer" is surreal -your mind goes straight to very dark places -it is awkward telling other people, but a relief too -your nurses become your lifeline (Wil has the best) -do NOT google, but you will anyway and it will scare the shit out of you, but you will learn reliable sources -you will be sad ALL. THE. TIME. -it feels weird to be called brave -it makes you crazy and suspicious of every cough, sneeze ache and every test is questioned -it is hard to accept help, but there is NO WAY you can get through the first months without it -mood swings are real, one day you feel like you can take on the world, the next you are sure you are going to be one of those sad stories people tell their friends. TRUTH! -cancer completely takes over your life -your appearance is tied to your identity more than you'd li

Tuesday LP

I need to check his files, but I am pretty sure this is his 20th time in surgery. Anesthesia is never fun, but I do think his body is able to tolerate it more. Only time will tell. ONLY 32 more to go...if we are lucky.

Monday

Monday Sunday Wil was able to catch his cousin’s basketball game and Monday he went to school. Still dealing with chemo puking in the mornings but he is recovering quicker than before. He is back at the hospital Tuesday morning, always makes me nervous. Hard to believe it has been a month since his last surgery. Send some love his way  🙏🏼  he’s not looking forward to it. I’ll update after surgery. P.S. My 8 random acts of shared happiness were amazing! Thanks to my friends who participated too, I love how creative y’all are! So much luv and admiration for all of you.  # wilswarriors

Numbers trending up!

8 months since diagnosis...8 was Wil’s first Soccer number. He loved it because 8 on its side is the infinity symbol. I love random, crazy associations that mean nothing and everything. Today Wil’s numbers came up for the first time in four weeks. I experienced a genuine moment of happiness. It sincerely shocked me. Earlier in the day I had read an article on sorrow and the author wrote “happiness is not a place we arrive, but moments we pass through.” I love random, crazy a ssociations that mean nothing and everything. I think this weekend I will share random moments of happiness with 8 people to pay it forward. I welcome you to do the same. I love random, crazy associations that mean nothing and everything. P.S. Thanks Aunt Vic for taking Wil, you make a great “next.” I love you!  Just one night of pills...it is overwhelming. 

#morethan4

 We must raise awareness of pediatric cancer and fund research! It's hard to not share every heartwrenching story that I come across. When you become a cancer mom, you become acutely aware of the suffering of others. Even before Wil's diagnosis I was/am definitely what one would call an empath . I immediately take on the suffering of those around me. Luckily early in my teaching career I was able to learn how to NOT take every kid home and adopt them, but that does not stop my feelings ESPECIALLY when it comes to kids. It is one of the many complex reasons why dealing with my son's cancer diagnosis is so emotionally painful. I am just going to share here a group of articles that touched me lately, all of them have links embedded. They have been weighing heavily on my mind and although I don't wish to cause others to experience empathy fatigue, I also do not want to just let them pass by without acknowledgement. All of these stories contain public information an

Truman Middle School

Truman Middle school is sponsoring Wil's Make a Wish We heard news that World Cup 2018 is not going to be able to happen. We had another meeting with the MAW folks and are working on plan 2. Truman continues to do wonderful things to raise funds. Truly blessed by our wonderful Lindbergh community. " Thank you to the students and staff who donated to our Make a Wish Pie in the Face collection this week organized by students in flyer time with Mrs. Uhrhan and Ms. Jones. Today Dr. Straatmann, Mrs. Uhrhan, Mr. Segraves, and Mrs. Thomas were pied in the face during lunch. Let's continue to work to make Wil's wish come true!"

Jan 11 clinic visit

Just a day in the life of the Ohler family. New bruises and numbers are still low, hoping it is all an adjustment to the new chemo schedule. Hanging tough as always and finding ways to make everyone laugh!

Jan 8 Monday Monday

Let's start off with the good news from the weekend. Wil is calling it DAY ONE, he went to the pool and swam laps. Not sure I'm allowed to publish the amount, but let's just say the kid is competitive even when he has done nothing for 8 months. There are no actual pictures of this swim as I was trying to think good thoughts about him not drowning! And as long as we are being positive, I heard good news from the insurance company after arguing over a $133,000 bill that they are cutting a check! Trust me if you ever wanna complain about insurance, I'm in and will bring wine.  AND on to Monday...Wil woke up at 3 am with heavy night sweats. We got new sheets and covers and he did not have a fever so he went back to sleep. I was able to get up and go to work in the morning while he was asleep, but got a phone call of Wil puking loudly into the phone. AHHHH the joy of a teenager on chemo. He did not have a fever, but we can not keep him warm and he has constant go

Jan 5 Clinic visit

  Clinic visit today. Numbers are down again, but it has only been 2 weeks, doc will work on finding the right level. I will try to not panic while his platelets are low, reminder to please donate   🙂 . Thanks Kate for taking him. We started stringing his beads of courage for the past cycles of treatment, it’s been interesting to revisit this bumpy and often times heart wrenching journey and its representation in beads. I’ll give the whole run down when I’m further along but red=blood/platelets, yellow=hospital overnight stay, white=chemo, etc. I really like the visual representation for kids, we didn’t start until Oct but as a teacher I’m very pleased with this program. I am doing a spiral instead of strands and I’ll have to explain my love of spirals later too as the boy need food! Beads of Courage  check them out if you would like to sponsor a bead. $15 you wear two beads during a special accomplishment and then write a note about what you did to a kid who is fighting

Jan 3 update

Kristen is heading back to Mizzou tomorrow, we had a great break together. She has a great job in the ER and will spend the rest of her break working. Kate got out of her boot yesterday and is in a brace. She is cleared for light exercise (bike/swimming), she will start gearing up for her spring soccer schedule. Wil is going to school tomorrow! His numbers are still all over the place and he is fighting a bit of a cold, but the past week he has felt the best he has felt in  over 3 months! It is nice to see him smile and talk about the future, wanting to get back to Soccer. He is still fighting typical chemo crap, tired, headaches (low on blood), and intense bone pain, but he is a warrior. The doc will spend the next 70 days or so figuring out the best combo of chemo to keep his ANC low enough to not allow any new leukemia cells to grow, but not so low that he is unable to fight of infections. Germs are still going to be his biggest enemy. He takes daily MP6 chemo pills, weekly hig

Happy New Year

2017 will forever be burned in my memory. I’ve spent a good part of the day in reflection. So many blessings have come my way and I would trade them all for one thing. In 2018 our family is going to figure out what’s next. Thank you to everyone who continues to be part of our story. Happy New Year.