The past 2 and a half months have been a roller coaster. Literally we have amazing days when both kids are happy, healthy, playing and we forget for a few hours that we’re battling cancer. Then the very next day she could be nauseous and just to get her to take a single crushed pill takes us an hour, longer if she throws it up and we have to do it again. Yesterday was a long hard day. I try not to focus too much on the hard times but I thought I’d change it up and give a blow by blow of what a hard day can look like.

Sunday morning Madelyn came in to our room and said “Mom, I think I need to throw up” in my just woke up fog I half leaped half fell out of bed and followed her to the bathroom. She vomited a little and dry heaved even more. However then we took a Zofran and she seemed good.

We went down stairs to snuggle and watch TV. A few minutes later Parker came running down giggling and ready to snuggle mom. 

Brad brought mom a coffee and joined us on the couch. We just booked our new dates for our Florida trip (to fit into her chemo schedule) the night before so we told the kiddos and spent an hour all googling and watching you tube videos of water parks in Orlando and Tampa. The kids were so excited! The sun was out which really makes us northern Michigan folks excited in the winter so we were ready to face the day! Madelyn has been nauseous since her chemo on Friday so we were wrapping our heads around the battle we would have with morning meds. Mom gave Madelyn a kiss on the forehead. A new norm for mom and dad to check for temps, and she felt warm. Took her temp.. 102.6.. we always take it twice. Once on each side of the tongue. Both in the 102 range. Panic set in… Brad could read it in my face so then we were both in panic mode. Our nice morning, of how could we go enjoy this sunshine before our ski lessons just turned to this is going to be a long crappy day that we hope doesn’t escalate to anything serious. Protocol is to call DeVos with a temp of 101 or higher. So as I have the phone to my ear I’m looking for the lidocaine and press n seal wrap that I know they are going to make me use on her. Madelyn starts crying when she realizes the lidocaine is out. She knows that means she is going to get poked and she wants to know where and how many times. I stop and sit with her trying to get her to quiet while I’m talking to an operator then the on-call oncologist. Sure enough, they want lidocaine on both arms and her port. They call the ER at Munson to let them know we are coming so we don’t have to wait with all the sick people in the waiting room. In the mean time Brad has already predicted we’re headed to the ER and is packing our go bag with all her meds, paper work, iPads, card games and snacks. Parker is confused and not a fan of us running around telling him to get ready to get out the door and Madelyn is still crying. We somehow manage to get everyone in the car. The closer we get the more she cries. She hates being poked and she knows she’s going to get at least two. When we get there we mask everyone up. Last thing we need to to catch RSV or the flu! I demand no one touches any surfaces until we get registered and in the room. That is where we spend the next 6 hours. Which included accessing her port, blood draw from her arm, chest x ray, nose swab for the flu, 2 rounds of IV antibiotics, vomiting up our AM oral meds that we finally got around to taking, mom begging to have those meds delivered via IV, and IV Tylenol since we didn’t want to force her to attempt oral meds again and vomit. We had had enough. Parker was bored by this point however he did amazing considering how long we were there. All the test came back good. We are still waiting on two blood cultures if those are negative I believe we are chalking it up as a reaction to her Chemo or fighting a virus. We were finally going to head home. But not before we have to remove the large tape on Madelyn’s chest and pull the butterfly iv from her port. This part really sucks and always makes her cry.

The next morning a DeVos nurse checked in with us. She said if her temp is 101 or higher after 12:00 to call them back. It stayed in the 99 and 100 range until 1:30. I took her temp with our thermometer DeVos gave us and got one reading over 101. So I grabbed our other thermometer and took it again. Under the left side of the tongue read 99.9 and 100.5 and under the right side of her tongue I got 101.5 and 101.7. I seriously hate thermometers! What do all those number even mean?!? So I called DeVos and told her my story with the two thermometers and 4 readings. She told me we were going back to the ER. Ugh!! Madelyn is beside herself now. She keeps saying “I don’t want to go!!” And screamed bloody murder when I put on all her lidocaine patches. We thought it was best to leave dad and Parker at home for our 4.5 hour trip to the ER. She got another round of blood cultures from an arm draw and from her port so two more pokes. Then she got 2 more rounds of IV antibiotics. We won’t hear on her cultures until tomorrow and or the next day. However Surely tomorrow all those antibiotics will fight off whatever is going on. Poor girl. On a happy note besides some nausea, needles, bad-aides and tape she is happy and acting normal. She was all excited for her new game that arrive today (Christmas money purchase) so she took her evening meds quickly and played for a bit before I declared night time. Mom is looking forward to some peace, quiet and wine.

Our “2 years of chemo” officially started on Friday. We are hopefully we have more ups than downs but I’m sure it will still be a roller coaster.