October 20

It's been a busy and somewhat stressful week. Evelyn started her steroids again last Thursday for a five day stretch and we have noticed these ones are hitting her a little harder then the ones previously. Sleep has been an issue - usually having trouble getting to sleep and up for the day in the wee hours of the morning.

Her moods also change rapidly and she gets angry very quickly. Evelyn's appetite increases as well and can usually eat as much as an adult. Her taste buds change so she isn't interested in most things but when we find something she likes there's no stopping her. The nurses have told us when the children are on steroids there is usually one food that the child craves and can't seem to get enough of - Evelyn's happens to be deli meat so needless to say our fridge is always stocked :). She finished the dose on Monday but on Wednesday we noticed she seemed to be in a lot of pain - we could hardly touch her, normal movements were very difficult and she was shaking like crazy every time she had to move. We were concerned and called our clinic nurse - she informed us this steroid can cause bone pain and prescribed us something to help with that. Very sore baby -

Over the course of the week each day we notice the steroids are slowly leaving her system - she is a much happier girl and doesn't seem to be in much pain. We are enjoying every minute Evelyn is her 'normal' (not on steroids) self since we know the week she is on steroids can be a tough one - its hard to watch (and parent) a child who has no control over herself or her moods. It makes our hearts happy when we see that cheeky smile come back :).

Unfortunately in two weeks she will be on the steroids again for five days but knowing how they affected her last time we can prepare a little better and be ahead of the game with her meds. We are in the middle of the two weeks where we administer her chemo at night - the last night will be Wednesday and then we get a break for a week. Over the last 10 days Evelyn has had 3 out of her 4 lumbar punctures, her last one is this coming Tuesday. Aside from one disastrous morning of a mixture of steroids, being awake at 3:00am, delays in clinic and not be able to have milk/food, all the procedures have gone well and don't seem to bother her once we get home. We are looking forward to this busy time being over and back on a weekly routine. Early mornings at clinic -

Lindsey and Stephen 

Matthew 11:28-30 "Come to me, all who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

October 8 - Day 49

It's been a couple weeks since I last posted and hopefully from here on out it will be more of a weekly post since not much is happening on the days in between treatment. Last blog post I mentioned Evelyn had a body rash, diaper rash and mouth sores and I'm happy to report they've all cleared up so she is feeling much more comfortable and happy. We've had a couple clinic visits in the last two weeks - one for bloodwork and another to get her NG tube put back in (it was yanked out by accident over the weekend) and since Steve is back to work full time, hospital visits are just us girls :). This coming Thursday Evelyn will receive chemo through a lumbar puncture to kill any micro cancer cells that may be developing in her brain and spine. This will be the first of four in a row - next week she will have one on Tuesday and Thursday then again the following Thursday. Evelyn has been off her steroids for about two weeks now and on Thursday she starts back on them for five days then off for two weeks, on for five days etc. For the next two weeks we will be administering a chemo treatment at home again - this one will be given in two week stretches then off for a week for the next little while. All the medications can get really confusing so having a chart on our fridge helps keep us on track. Here is a little glimpse into what we've been up to:

Enjoying the nice weather

Lazy days and silly faces

Everyday happenings

Waiting at clinic

 

A tired Daddy home from work :)

 

 

Lindsey and Stephen

 

Matthew 6:33,34 "But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."