A day in the life

Wednesday is marked by most folks as "hump day." The middle of the week. The point at which you can see the weekend from here if you stand on your tippy toes and squint. Maybe it is the day you start bugging your spouse about the Honey-Do list for Saturday afternoon. Maybe it is the day of your big weekly staff meeting. Maybe it is the day you start talking about where you will spend Friday nights after work happy hour. For us, every Wednesday, for as long as we can see into the future, is chemo day.

Our day starts with getting Alannah and Zachary dressed, ready and out the door to school. We apply EMLA cream, a numbing agent, to the skin over Mandy's surgically implanted port. This eases discomfort during port access.

First thing at chemo Mandy gets weighed, measured, temp, blood pressure and pulse taken.


Then it is off to an exam room to have her port accessed. This is when the nurse will put the needle in her port that will be used to administer the chemotherapy medications.



Mandy takes the Glad Press and Seal off of her EMLA cream. (Yup, that's right, Glad Press and Seal, it's not just for food anymore)




Then her nurse cleans the port area for 30 seconds. Mandy HATES the smell of this stuff.





Mandy has a counting thing and picks a number less than ten to count to before the nurse is allowed to touch her port. The nurses absolutely rock and are incredibly patient waiting for Mandy to reach her magic number. One of her very favorite nurses, Miss Lisa, has the needle hidden in her hand, waiting for Mandy to finish counting and be ready.





Then in goes the needle. This is no fun, but Mandy is so brave and strong.



Then we draw the blood to do the counts that we are so dependent on. These counts tell us if her immune system is strong enough to handle the chemo that day or if she needs additional blood product in a transfusion.



The needle is taped down to keep it secure and germ-free. The tape going on is a cakewalk. The tape coming off is a nightmare. Thankfully, there is an adhesive remover that helps immensely with that part.



Today, all her blood work was fine, so it was down the hall to the infusion room. The process of delivering all the medications takes about an hour and a half. Sometimes she plays with the awesome staff, like her other very favorite nurse, Miss Emily.



Sometimes, she just watches a movie.



She gets several medications through her port: An anti nausea medicine, her chemo meds, a saline flush and a heparin flush. This process takes about an hour and a half. The tape is removed, the needle is removed and we head home.

Today she had a particularly upset tummy and needed an extra anti-nausea at the end. That one is a narcotic and leaves her pretty strung out.




The thing about chemo day: it's just what she does on Wednesday. If you look closely at these pictures, what do you see? She's smiling, she's laughing. She loves these nurses and these doctors. A kid in chemotherapy is just that, a kid. It is a crummy, nasty situation, no doubt, but, it just becomes "the new normal," as much as it can be.

When Mandy first started treatment she was incredibly angry and upset. She would cringe every time it seemed like anyone might touch her. She was like a wild animal sometimes, angry and scared and defensive.

She bounces in there now, being her loud and happy self. She hugs all the staff hello and then hugs them all goodbye. She laughs too loud, jokes and grins. Even when she feels lousy, like today, she always has a smile for these people.

She may be an 8-year-old brain tumor patient. She may be an 8-year-old Neurofibromatosis patient. She may be an 8-year-old chemotherapy patient. But that is not what defines her. That is not the whole of her. She is an 8-year-old little girl who has been forced into a situation that called for extra strength and extra bravery. Just like pretty much every other kid who has been put into this situation, she has taken it and made it her new normal. She has found a way to be okay with it. She has found a way to find joy in the most unjoyful of situations and has truly become a hero, embodying strength and hope and bravery.

Love to all~