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."

 

 

 

 

 

 

 

March 2

It's been two weeks since last post and another element has been added to Evelyn's treatment. Last week at clinic Evelyn's blood sugar was checked to see if it had improved over the week - unfortunately not much had changed and her sugars were still below average. 4.0 is the magic number and she was sitting at 3.1. A drop in blood sugar can be from one of the chemo drugs she is on. Since she will be on this drug for two more months we have had to learn to control and monitor her sugars daily. That Thursday I talked to our nutritionist about what to feed her to bring up the sugars and maintain them, especially through the night when she doesn't eat for 12hrs. And also the endocrinologist (diabetes) doctor about learning to check the sugars at home with a blood glucose monitor.

For the first four days we had to poke her finger first thing in the morning and record the numbers then go from there. We were sent home with all the supplies needed to check glucose. On Friday I had realized the doctor hadn't told me what numbers were good/dangerous and had never told me to recheck/poke again if the number was low so I emailed my nutritionist. I didn't really worry since Evelyn's numbers were always sitting between 3 and 4 and that's what she had been in clinic. I got a response from my email on Sunday night saying if it was below 4 and not going up she should be taken to the hospital; also I should have been giving her juice (correcting it) and rechecking it to make sure it came back up - no one told me this so naturally we panicked and called the hospital that night. Evelyn was already in bed but we were advised to wake her and poke her finger to see where her glucose was sitting - thankfully it was up to 7.0 so back to bed she went. Monday morning I called clinic to get things sorted out - it seemed to be a miscommunication between myself, our nutritionist, the endocrinology doctor and the pharmacist. After all that we got things sorted out and I came off the phone with a better understanding of everything. I was advised to keep checking it first thing in the morning, correcting if her number was below 4.0 and rechecking to make sure it had gone up.
That Thursday in clinic we had a meeting with the endocrinology nurse first thing to show me the signs of low blood sugar - irritability, sweating, low energy; how to manage it and all the numbers that go along with it. After that we headed over to finger poke then up to clinic for Evelyn's chemo. While we waited for her chemo I met with the endocrinology doctor to answer a few of my questions and figure out a plan for the next two months. He wanted to see how her blood sugar is throughout the day so for the next four days we have to check Evelyn's glucose four times a day, correcting and rechecking if need be. Then we go back to checking once every morning. To maintain her levels throughout the night we have to put a tablespoon of cornstarch in her nighttime bottle - it's proven to hold her sugar levels and so far her number is just above 4.0 in the mornings. Other then that carbohydrates are good to maintain her levels which has been a challenge since Evelyn isn't big on bread, crackers, etc. or eating anything some days! :). The doctor also told me that her low blood sugars could be the reason to her 5:00am wake up time and we should see improvement once we get a handle on it all.
It's been a lot to take in and learn but hopefully it won't be for long and her levels will return back to normal in two months time. But for now Evelyn does really well with the finger pricks and as long as I have a Dora bandaid at the ready she cooperates :).
Evelyn had her first visit to the dentist last week too. About a week prior I had noticed a hole in one of Evelyn's molar teeth, I called our clinic nurse and she suggested we see our family dentist to see what he said.

Evelyn was a little unsure but cooperated knowing there was a treat and toothbrush when she was done. The dentist said it didn't look too bad and since it wasn't bothering her we are just going to leave it. Because of her age and the fact that she has cancer filling a cavity gets a lot more complicated and usually requires sedation. We have to come back in 6 months to have another look unless it starts to bother her.
As you can see its been a busy two weeks and we are hoping for a quiet week ahead before steroids start and Evel comes back ;).
A few pictures to end the post of our days at clinic and our days hibernating from this cold weather

She found the stash of hair clips and wanted one in her hair - there was just enough hair for it to stay :)

 

 

Lindsey and Stephen

 

Jeremiah 17:7-8 "Blessed is the man who trusts in the Lord, whose trust is in the Lord. He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit."