After we got Evelyn's medications we headed home. We ran a couple errands and got home early afternoon. Evelyn seemed completely fine this whole time - playing and telling stories with Charlotte in the back seat. As we got home cartoons were turned on and we settled in for a quiet afternoon. But Evelyn had other plans - within 20 minutes of being home Evelyn started to show signs of a fever. My heart was racing as I checked her temperature - it read 103 and she was once again loosing focus and shaking like a leaf. My head could hardly comprehend that this was happening again.. I called clinic in a panic and they told us we needed to come back to Mac immediately. Thankfully I was able to give her Tylenol before leaving to hopefully bring the fever down a little bit. I was home by myself and didn't feel comfortable driving alone with such a sick little girl so we called the ambulance again. I ran around the house in a frenzy throwing an overnight bag together for all four of us, putting shoes on, all the while making phone calls. Charlotte was my calm in the storm - offering to help me in any way, helping Evelyn with her shoes and standing ready at the door. The ambulance arrived and Charlotte went with my aunt until Steve could make it home from work. Off to Mac we went.
By about halfway to the hospital Evelyn seemed to come around a little despite her fever staying high. We got stuck in construction so the lights were turned on and we got to go "super fast" (in Evelyn's words :)). We were put in a room and started playing the waiting game.
Steve showed up about an hour later. Vitals were taken, her port was accessed, blood was taken and antibiotics started. The paramedics made this glove balloon that Evelyn insisted on doing vitals on :)
It took awhile for the doctors to come around but once they did it was decided that once again we would be staying the night or two. We were brought up to a room in the ward, reality hit Evelyn that she would be sleeping here and she wasn't happy. Charlotte was settled in at her aunt's house for the night and we got a room at Ronald MacDonald House.
Unfortunately over the course of the next day Evelyn's mood got frantically worse - the anger intensifying and lashing out on anyone around her including the nurses taking her vitals - nothing seemed to be going smooth. Friday and Saturday held a lot of waiting as we awaited the return of results from several blood tests. We had lots of food, visitors and toys to keep us busy.
Evelyn hiding and paying games on Daddy
When we got back from our short walk the doctor informed us that even though the blood tests came back negative, we would be staying one more night - she was concerned the red cheeks were related to the fever from Thursday and would feel better to see how Evelyn did 24hrs off of the antibiotics. Although it was a bonus that Evelyn was free of tubes for the night we were exhausted and worn out from the demands and anger coming from Evelyn. Steroid rounds have progressively been getting worse as we near the end, this past round was the worst of the worst. Never before had we felt so overwhelmed and at a loss as how to deal with the anger that steroids bring. We had to literally stand beside her and watch her scream, yell and throw things, waiting for it to pass because there was no reasoning and nothing we could say or do to calm her down. The doctors sensed our exhaustion and suggested we put Evelyn on a low dose of Ativan, an anti-anxiety medication to hopefully take the edge off. We decided to make the best of it and went over to Ronald MacDonald House for dinner as a family. We enjoyed a playful night with friends taking full advantage of all the play areas at RMH.
Steve and Evelyn headed back to the hospital for the night while Charlotte and I got in our pajamas and took advantage of Movie Night at RMH. Charlotte didn't care too much for the actual movie but she was more enthralled with the experience and staying up late :).
Sunday was a quiet day as we tied up loose ends, packed our stuff and finally headed home about mid-afternoon.
We were happy to be going home with a prescription for the anti anxiety med since it seemed to be helping a little. We were also hoping Evelyn's mood would improve once she was home and comfortable. Sunday night was a quiet night at home and early bedtimes for all of us. Unfortunately Monday came with a vengeance - Evelyn's anger and indecisiveness intensified and the Ativan seemed to be doing the opposite. Monday and Tuesday are always the worst days of the steroid round but this seemed to be off the charts - it was a rough go.
Tuesday she was scheduled for her sedated echo - meaning a very angry and hungry steroid bear had to fast all morning - I was dreading that morning. Thankfully our clinic nurse called on Monday to inform me that the echo wasn't urgent and was rescheduled for Thursday morning before her regular chemo so we would only have to make one trip (and the steroids would be worn off by then). I also discussed with her Evelyn's mood and that I felt the Ativan wasn't working. She suggested we up the dose and see how it goes. Unfortunately it didn't seem to work so we were all happy and relieved when Thursday rolled around and Evelyn seemed more herself.
Thursday morning we were up with the sun, out the door and at clinic for 7:30am in time for her echo scheduled at 9am. Fortunately things went smooth and Evelyn was the first to get in. She was sedated for over an hour as they did a thorough examination of her heart, making myself and Evelyn's Nana very anxious.
(on a side note - one of our nurses found a cap, drew a face on her finger and then it danced! This is how amazing our nurses are - that smile says it all :))
Once we got home from the long morning at clinic we settled in for a quiet afternoon but Evelyn had other plans - while playing with Charlotte she tripped and fell on her foot. The scream that came from her told me it hurt. For the rest of the day she had a hard time walking on it but since it wasn't bruised or swollen we assumed it may have been twisted the wrong way. Friday morning came and she still couldn't put any pressure on it so I called clinic and they told me I needed to come in to have it looked at. Because of chemo Evelyn's bones are more likely to break and we wanted to be sure it was broken. Back to clinic we went. She was checked over by the physiotherapist and we waited for the doctor to see us.
She suggested we get an X-ray to rule out a break or fracture. She also informed us if it was fractured treatment would be pushed back because steroids delay the healing. We prayed this would not be the case and I can thankfully say it wasn't - yay! We were ordered to take it easy the next couple days and hoped that was the end of the excitement for the week.
Another small issue we've been dealing with these last couple weeks - it was determined Evelyn's iron is very low and could be the cause of all the milk she drinks (too much calcium in the body won't allow the iron to absorb). She is now on an iron supplement and we were told to cut way way back on her milk consumption. This is proven to be a challenge on steroids but off steroids she is doing well. Her iron will be tested in a few weeks and if things have improved she can hopefully come off the supplement.
Evelyn also had a routine bone density test last week along with her chemo. She did great and Charlotte helped by cheering her on - they both walked out with treats for being such good girls :).
Evelyn got a little hair trim - she wasn't impressed
"For I will satisfy the weary soul, and every languishing soul I will replenish." Jeremiah 31:25
