Dec 30 Last clinic visit for 2017

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)

thigh bone pain (tylenol and oxy)

lower back pain

headache

Comments

Please follow on facebook

Sorry that I have not updated here as I can not do it from my phone. Wil was in the hospital 2 weeks in April and then on his Make a Wish trip the first week of May. Please follow Wil's story on facebook "Wil Ohler's fight with leukemia #wilswarriors" https://www.facebook.com/Wil-Ohlers-fight-with-leukemia-wilswarriors-174102950041537/

5/25/2017 So, Wil is resting at home. It was a bit of struggle balancing him as he walked from the car all the way to the upstairs bedroom, but we made it! None of us were ready for him to leave the "safety" of the hospital. There you have a whole team of nurses with all that equipment to monitor him, so it was nerve wrecking thinking of bringing him home with nothing to help keep an eye on his vitals. After nearly a week of watching machines and carefully watching his pulse, checking his oxygen, and monitoring his heart rate it was hard to fathom going cold turkey. We joked that it was like bringing home your first baby. You can't believe they're just letting you walk out with this fragile young human. Scary. As of today, he's still in a lot of pain, his port continues to bleed, he's had a bloody nose, his bones ache, his back is sore, and is bored already :) However, sleeping in a nice big soft bed has helped...those hospital beds are definitely not built...

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

ALL in for Wil

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