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8/9/17 Port




Wil rested yesterday and hung out with my sister so I could get back into my classroom. As he always says "I gotta save up my energy so I can hang with my friends" and he was able to hang out last night. Yes, he does pay a physical price the next day but SO worth it says Wil (mom not so much somedays ðŸ˜‚)
We are still waiting for the alternative chemo to be sent. The Erwinia will replace the Asparaginase in Wil's treatment protocol. The bad news is that this will require very painful shots in both thighs for 3 days each time.
Some have asked about his port, especially his friends who can see it bulging under the skin on his chest. Wil had a double port pictured below. It was surgically placed under his skin and the catheter goes directly into his heart.
When he has to have chemo or blood drawn, the nurse accesses his port by sticking a 1 inch needle through his skin into his port. They flush with saline and then usually pull blood to run labs to check his counts (red blood cells, white blood cellls, platelets, etc). The needle/line can then be hooked up to an IV to deliver his chemo drugs.
We have had many complications with his port, it is very frustrating when they are unable to access or draw blood, but boy do we cheer when we see blood return! He has also been having many allergic reactions to the numbing cream and bandages they use. The port limits his activities and he is very conscious of it, hence the hunch back old man walk we are trying to correct with physical therapy.
As I have said before NOTHING is routine about cancer.
All that said we are very grateful that the port allows him to save the veins in his arms and that he is in much less pain than if they had to access multiple veins in his arm dozens times a month! It is just part of our new "normal".
Now let's hope the new meds are delivered today so we can get over the anxiety of waiting!

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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/

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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