ALL in for Wil

And the evening ended on a good note watching the championship game of the Coaches vs Cancer tournament. Thanks to  Lindbergh Schools  Coach Wolfard for nominating Wil. We all hope that the tournament raises awareness (go for that screening you have been putting off), we hope more people head to local blood drives, we hope for more donations to fund research for childhood cancers, and most of all we hope that people spread kindness by doing for others. Many thanks to  Coaches vs Cancer St. Louis  for honoring Wil and for all their work with American Cancer Society. Thanks to everyone who gives Wil hope in his battle vs leukemia.  # wilswarriors # strongertogether   # CVCSTL

Wil finished frontline treatment. This is his first visit for bloodwork during maintenance. The goal as I understand it is to keep his ANC between 1,000-1,500 to keep his numbers low enough so that no new leukemia cells can grow. The next few months will tell us what needs to be adjusted and then changes will be made. We are following the COG protocol TALL 1231 regimen A. He had vincristine and intrathecal methotrexate last Friday along with his lumbar puncture. He did a 5 day steroid pulse and took his 18 tablets of oral methotrexate on Friday morning. He takes 6mp (mercaptopurine) in a cycle of 3.5 pills for 5 days and 3 pills for 3 days. We are going to need a calendar to keep all this straight.  12/30/17 Labs: WBC 3.2  up from 1.9 RBC 2.8   down from 3.2 Hemoglobin 9.1 down from 10.6 Platelets 151 down from 253 ANC 2.37 up from .8  symptoms:  has a cold (taking Nyquil/dayquil & nasacort) heartburn (mostly from steroids) ...

So blessed to spend Christmas with family in the desert! Wil had a bit of a rough go of it the first few days as he was on steroids, but in typical Wil fashion he sucked it up and made the most of his time with family. We have decided it has to be the steroids that are giving him such horrible heartburn. And typical bone pain especially in his thighs after the chemo vincristine on Friday. By Wednesday he was feeling much better and was in a good mood. Both plane rides went by without much incident. He had bad back pain, but meds were able to make him comfortable enough to sit. This was the first year we were not in Disney with Wil's soccer team. We love each of them so much and only want continued success for each of them. 

http://www.southcountytimes.com/Articles-Columnists-c-2017-12-21-202752.114137-sub28364.114137-The-Nutcracker-Prince.html December 22, 2017   For Wil Ohler, a Lindbergh junior, Christmas has always been about nutcrackers.   A collection that started because his mom, Tamara, wanted to make sure each of her three children would have legacy decorations for their own homes. For the oldest, it was Santas; for her sister, snowmen. When Wil came along, the girls chose nutcrackers for their baby brother.   His collection grew as he did, along with an effervescent personality and a love of soccer. "He's that kid everyone gravitates toward," said Tamara Ohler, who teaches in the PEGS program at Sperreng Middle School. "Anywhere he goes, everyone's like, 'WiLLLLLLLLL!'"   Once, he saw a young couple eyeing a nutcracker in a store and overheard them say they couldn't afford it. He had his mom buy it, and then hurried to catch them in the parki...

As always I am amazed at the outpouring of love towards my boy. I hope the message of Hope comes across clear. In sports it’s not always about winning or scholarships ... it’s about teamwork and lifelong friendships. Wil and all his teammates know that no matter what happens on the field or in life they can Always fight their way back. Wil could have never made it through the past 7 months without amazing teammates and friends. No one fights alone. http://www.ksdk.com/mobile/article/sports/battle-on-leukemia-is-now-this-soccer-stars-competition/63-501586247

Monday, Dec 18-Friday, Dec 22 Wil's counts were low on Monday need to be up to 800 to travel on Friday.   Happy to report Wil has not thrown up today!! (And yes I realize I probably just jinxed myself 😳 ) Tomorrow we need his numbers to start rebounding (aka MAKE SOME BLOOD) so he can get rid of this continual headache and enjoy the chemo free week. How very fitting that today is the Winter Solstice! Starting tomorrow the amount of sunlight gets longer, it doesn’t happen all at once and there are so many cold and dark days ahead, but we know summer is coming. Very fitting as today is Wil’s last day in frontline treatment. We know he has 3 long years ahead of him but it is coming. I am equal parts excited and terrified! Last I heard Frank Cusumano is airing Wil’s story on channel 5 at 10:00 tonight. I am hoping that it gives anyone struggling hope for the future. Happy Winter Solstice!  

Hard to say how proud I am of this kid. Wil received the 2017 Stephanie Phillips Survivorship Award for outstanding courage and leadership in the fight against cancer. Huge Thanks to Coaches vs Cancer STL. We support their mission of raising awareness and funding. Coach Jason Wolfard at Lindbergh nominated Wil for this award and we are grateful to him and his entire coaching staff.  Staff at Coaches vs Cancer STL doing great work.  Yup, still proud (and let's be real, glad he didn't puke) F-L-Y...E-R-S Here is Wil's speech... Coaches vs Cancer Speech 2017 - Wil Ohler Thank you for this award.Thank you to Coach Wolfard for nominating me. Thank you to the family of Coach Stephanie Phillips, I’m sure her family misses her even more so during basketball season. Cancer is not a team anyone ever wants to join. The week before I received my leukemia diagnosis I was playing a soccer tournament in Chicago. Yes, I had been feeling bad for a very lo...

Having a very rough time of it. Today is last round of the Erwinia chemo, we will NOT miss it. 216 very painful leg shots. Sorry to preach the s ame old song and dance but  # chemosucks   Hoping the aloxy and protonix shots keep the nausea away. 

3 a.m. 6 hours of puking and sleeping on the bathroom floor, that is the real story of cancer.  # cancersucks

One more dose in this crappy phase of chemo. Why do we think chemo is a cure for anything? There has to be a better way. Pain and puking poison is not an answer.  #morethan4   #cancersucks

Another Monday, another round of chemo. As this phase of treatment winds down, there will be less visits to the clinic for IV chemo or at least not every day or every other day, which seems like we have been doing forever (almost 7 months). Needless to say everyone is going to be a little lost without having nurses and the wonderful people at the office checking in on us all the time. Yesterday the staff gave Wil a soccer player Nutcracker for his collection (I will add his picture). They are so good to him. I put hearts on the nurses face to protect them, not because they don't want to be on the blog. They have truly been a lifesaver, putting up with my  man-child and all his antics. They recognize his subtleties and his not so subtle changes in health and his emotions. They have never made him feel bad for being a kid (when he obviously doesn't look like one) and are always the first ones to tease him when he is feeling down. Wil is going to miss their attention the most...

The boy is having a good day today. Watched Trans Siberian Orchestra with me this morning and watched his soccer team win this afternoon. The girls are studying for finals. Life is moving forward. Also FRIDAY it was FREEZING at chemo!

From last season, but STILL in love with that goalie in green at the 10 second mark! I love how happy he is for his teammates when they score. https://www.youtube.com/watch?v=WHlf1vLaUdg&app=desktop

Wil: "Today is my birthday and every year I give away a Nutcracker to kick off the holiday season. This one is for you, Merry Christmas!" Others: "is it a bomb?" "Why?" "What do I owe you?" "Thank you" "For me?" "You are so sweet, Merry Christmas to you too!" "A Nutcracker? (Squeals) "That's awesome man" Wil has an amazing nutcracker collection. A few years back a young couple was admiring the nutcrackers at the store and the young hubby said "we can't afford that right now."  Wil and I made eye contact and we knew... he stalked them and I hurried to purchase the one they were looking at. Me throwing cash at the cashier and he's texting me from the parking lot. Sprinting to them in their red beat up pick up truck we hand them the nutcracker and say Merry Christmas, pay it forward someday when you can....She cries and he shakes Wil's hand... So every year we give away a ...