Friday 14 February 2014

February 13

This week, along with the usual update we would like to shed a little light on our experience and effects of steroids on Evelyn and our family - something that now seems so 'normal' to us but still produces a lot of questions from others and is often hard to sum up in a sentence or two. Some steroid rounds can be a breeze and others are pretty rough - just when we think we have her specificities down she (and the steroids) throws us a curve ball, so every round we do some adjustments to keep her happy and comfortable (and us sane). On the whole we feel like we have a general handle on them when they come around every two weeks. The past round was probably one of our worst ones, taking a toll on us physically and emotionally.
Steroids are scheduled for every two weeks - Evelyn receives her first dose when we get home from clinic on the Thursday and within a couple hours we notice a physical difference - dark red circles appear under her eyes, her skin is so pale its almost translucent and she starts to get short-tempered. The dose on one of her chemo drugs was upped recently so the nausea sets in on the car ride home and usually lasts through Friday and Saturday. As the days go by we slowly say goodbye to Evelyn and hello to her alter ego 'Evel' as her irritability intensifies. It's a hard thing to explain - she literally turns into a different child and its out of her control, hence the alter ego :). She is very indecisive - asking for one thing and once we give it to her she cries and screams that that is not what she wanted. If her blanket isn't just so or her shirt is up and her tummy showing - little things like this can set her off, usually crying, screaming or throwing whatever is in front of her. We've learned what her triggers are and if we can catch them before hand it usually works to avoid the major meltdowns. And we can count on her bottle, lion and blanket to calm her down quickly :).
On a side note, Charlotte probably gets yelled at the most trying to help keep Evelyn happy or just wanting to play with her. We are so proud of her because she usually picks up on the fact that Evelyn is on steroids and starts to mirror Steve and I's reactions to Evelyn. It is so sweet to see the love and care she has for her sister. We try to plan something fun for just Charlotte and one of us since she can sometimes receive the short end of the stick on steroid week.
On the Sunday we start her on one of her pain medications because usually late Sunday or early Monday her bone pain kicks in. Monday night is her last dose of steroids but the symptoms continue through to Wednesday. Monday we also start her on morphine because the pain can get so bad she has trouble climbing stairs, getting up on the couch or chairs. She becomes really sensitive to touch, cold and water (hates taking a bath on these days). We've also discovered her hearing is sensitive, often getting worked up and more irritated in noisy, crowded places. These days we hang out quietly at home watching a lot of movies and cartoons. Sleep is also an issue because of the pain - Evelyn is sometimes up 1-2 times at night, up in the early morning hours and takes short or no naps during the day.

 
 
A few days prior to steroids we stock the house with plain potato chips, pretzels and soup because that happens to be Evelyn's choice of food throughout steroid week. The steroids have the ability to change or dull her taste buds so she prefers really salty or sometimes spicy foods. Most parents are glad for the steroids because that's usually when their child can eat as much as a grown man but with Evelyn she usually eats very minimal if nothing at all. We supplement her for about 4-5 days with Pediasure just so she has something in her stomach when she takes her medications (a few of them can make her really nauseous on an empty stomach). Other symptoms can include swelling, especially in the face and the occasional bout of diarrhea or constipation.
Emotionally, these are the hardest days for Steve and I - to see her so opposite from her usual self and almost immobile - its difficult to watch your baby in so much pain. But thankfully we can look forward to Thursday when the symptoms wear off and our Evelyn-bear returns :). Through God's grace and lots of prayers He gives us the strength, patience and understanding to get through the week. Evelyn helps by giving us small glimpses of her normal self by a goofy smile or giggle fit with her sister. Needless to say it is quite the rollercoaster ride! :).




Loves to dance and sing
 


Yesterday she was scheduled for her routine lumbar puncture - we were at the hospital bright and early and the first one in line.
Not a happy camper
 

 Since Evelyn wasn't allowed to eat or drink the night before (and she hadn't eaten much dinner) her blood sugar was really low. She also threw up on the car ride to the hospital which probably didn't help the cause. The nurse hooked her up to her IV and gave her some sugar water to boost it before her procedure. Everything was running on time so Evelyn was able to get in quickly. She had a bit of difficulty breathing (which can be normal) during the procedure but other then that it went well.
 
Waiting for her to wake up in recovery
 

Once she was awake we headed back into clinic to finish up the rest of her chemo. Usually Evelyn wakes up pretty quick and is anxious to eat/drink something and run down the halls but this time she was a little more sleepy - she just wanted to cuddle with me then ended up falling asleep for a half hour on my lap.


Once chemo was finished the nurses suggested we stick around for awhile until she ate or drank something. They also wanted to do another finger poke to see if her sugars had come back up. Still fast asleep we went into the exam room to draw blood; they poked her finger and hardly a twitch came from Evelyn. We (and the nurses) thought this was unusual for our normally feisty little girl. They called the doctor in to check her over, took her vitals again to make sure everything was ok - all was good. Within a few minutes she perked up and eventually drank some juice and ate something - guess she just needed a quick snooze to bring back some of that energy :).


We were allowed to go home being advised to make sure she got something in her stomach to bring her sugars back up to normal. So we stopped for a Happy Meal since we knew she would for sure eat that :)


Last weekend we were blessed with a great opportunity, something fun for the girls and all their cousins. A year ago we signed Charlotte up for a Kindermusik class - its an education program based around music and movement; this was right up her alley and she quickly fell in love with her teacher Miss Corrie. About a month ago Corrie emailed me saying she would love to do something for the girls since they would not be able to attend her classes this year due to germs/not wanting to get Evelyn sick. She offered to come to our house to do a class for the girls and their cousins :). The kids had a great time and we are so appreciative for the time and effort Corrie put into the class.




 


And that pretty much sums up the last two weeks :).

One more picture before I end - this is the way Daddy like's her hair the best :)

 
Lindsey and Steve
 
Ps 63:7,8 "for you have been my help, and in the shadow of your wings I will sing for joy. My soul clings to you; your right hand upholds me."