March 18

This week you will notice something missing on the cute little face of our Evelyn - Tubey is gone! (Hopefully for good :)

Two weeks ago Tubey was once again yanked out, by mommy this time. Evelyn was very unhappy and stated right away that she "didn't want a new Tubey!" For a few weeks on and off we had been giving some of Evelyn's meds orally to see how she would do and since this had been going well we had considered leaving the tube out. Unfortunately since we were going into steroid week where she has the most meds and her attitude is not always willing we put the tube back in for the week but still tried to give her meds orally. Not happy it had to go back in -

We are proud to say this went well this past week with only one med that needs some bribing/trickery :). So last week at clinic we said good-bye to Tubey! :). Evelyn was really confused at first - usually when Tubey comes out the not so nice task of putting another one in needs to happen. I said it was time to go home and she just kept staring at me like I was forgetting something. But by the time we got home she was willing to show everyone that Tubey was all gone and we "don't need it anymore."
Every week at clinic we have been meeting with the endocrinologist to discuss Evelyn's blood sugars and any modifications that need to happen. Thankfully last week we were able to eliminate three of the four finger pokes and only need to check her sugars in the morning.
If you recall from a previous post Evelyn gets one chemo drug every other week where she gets hooked up to an IV and the chemo runs through for an hour and a half - therefore making it a long morning every other week. There are 15 rounds of this (so 30 weeks). Thursday at clinic I received my April calendar and was reminded we are coming to an end of these 30 weeks :) :)

 

 

Although Evelyn has learned to push around her own IV pole I think she will be happy not to have to be attached to it every other week :).

 

 

This particular chemo drug has caused some unexplained rashes and reactions as well as being the culprit to her low blood sugar so we can hopefully look forward to her glucose going back to normal and not having to poke her finger multiple times a day. We hope and pray everything stays on track so we can celebrate this small victory :).
A few pictures from Evelyn's steroid week, lazy days -

 

Evelyn's foods of choice this week was chicken soup (for breakfast), carrots with dressing, tomatoes, and lots and lots of garlic bread :)

 

        

 

Evelyn stayed pretty active this round and we even got to see her cheeky smile :)

 

 

 

Lindsey and Stephen

 

Habakkuk 2:3 "For still the vision awaits its appointed time; it hastens to the end - it will not lie. If it seems slow, wait for it; it will surely come; it will not delay."