August 31 - Day 11

This blog post will be a short one but a good one :). Today we were given the option of a leave of absence - leaving this afternoon and coming back to the hospital on Monday to do an overall check up on Evelyn and pick up more of her medications. Over the last couple days we were taught how to give Evelyn her medications through her NG tube so we would feel comfortable doing it at home. We were nervous to leave the comfort of the hospital but 'home' sounded so good we wanted to give it a go. The nurses reassured us we could come back at any time or call if we had any questions. This morning Evelyn was hooked up to her IV again to get blood work done and another chemo treatment as we packed up all our things from the hospital and our room at the Ronald Macdonald House. By 4:00pm we were on the road home and now sit in the comfort of our living room. We are amazed how our little lion fights hard, pulls through and continues to stay heathly - we daily give thanks to Him who is taking care of Evelyn, we are beyond blessed at how healthy she is despite her situation. We know that this journey is far from over and she can get sicker at any time so we continue to pray for good health in our little girl.

On our way home!!

About 10 mins into the ride

Eating dinner at home for the first time in two weeks

Evelyn's bravery beads - she receives a bead for everything that she's gone through (e.g. tests, chemo, steroids). We will continue to add to them until she is done treatment  

Just an idea of the medications Evelyn is taking on top of her chemo - this is two days worth (chemo gets done at the clinic)

Lindsey and Steve

1 Chronicles 16:34 "Give thanks to the Lord for he is good; his love endures forever."

  

August 29 - Day 9

We have had good days the last couple days. Sometimes the good comes by the day and other times its just a moment but we continue to thank the Lord that Evelyn is as healthy as she is and our good moments are frequent - we are so blessed. We continue to pray for good health and strength in Evelyn so she can pull through the tough times. Evelyn has perked up a little and her appetite is coming back. Yesterday she was unhooked from her IV - she was very happy about this, as are Daddy and Mommy :) 

Evelyn has been getting more tired these days - falling asleep in different places other then her bed

Needless to say most of the time she is still active and busy

The next 3 days Evelyn will just be getting her steroids and will be hooked up again for her chemo treatment on Saturday. After the treatment if she is still healthy and having full diapers she will not have to stay hooked to the IV. Also we may start to get LOAs (leave of absences) by the weekend so we will be able to get out or go home for a couple hours :). And as of right now we don't plan to move the port IV; if it gives us further trouble we are going to readdress the issue. Charlotte's also been a busy girl with family and friends coming to play with just her every afternoon. She's usually found in the toy room and bribes have been used to get her out of there :). 

Totally wiped out at the end of the day

And always more visitors

Lindsey and Steve

Proverbs 17:22 ``A cheerful heart is good medicine, but a crushed spirit dries up the bones``

August 27 - Day 7

August 27 - Day 7

Evelyn has continued with her daily chemo treatment over the last two days. We are starting to see some of the side effects of the chemo and steroids. She has developed mouth sores and become more irritable. Because of the sores her appetite is almost nothing and even her beloved milk has taken a back seat; although she is sucking on her bottle more often. The nurses have given Evelyn something for pain and she usually perks up a little once it's set in. Yesterday we talked with our doctor again about getting a second opinion from a different surgeon on possibly moving the port IV. Unfortunately the only surgeon on for the rest of the week is the one who put her port in - we will have to wait until the end of the week until another surgeon is back. By Day 11 if the patient is feeling well the doctors start to give leave of absences (Evelyn will get unhooked and we are free to go for a couple hours) and that has us wondering if it would be worth the hassle of moving it - it may just end up setting us back. The needle in her port hasn't come out in 3 days and if Evelyn is unhooked from the IV the needle only goes in when she has her treatment so it's nothing to worry about once we go home. We are going to wait out the week, see how Evelyn is feeling then revisit it again. Charlotte is now staying with us at the Ronald MacDonald House and is adapting great. They have the best toy room with any toy you can think of so Charlotte is in her glory :). 

Lindsey and Steve

James 1:2-3
"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance"

August 24-25 - Day 4 and 5

It's been a couple days since I've last written and not much has been happening concerning Evelyn's port IV. We talked with the head surgeon (the one who performed her surgery) and he had suggested instead of moving the port to insert a broviac or hickman to her existing port. It a tube coming out of her port and the needle is inserted in that tube instead of in her skin. In our eyes it sounded like a good option but after talking with our doctors they told us it wasn't a great long term solution, there was a higher chance of infection and she would be unable to do things like swimming during the next two years she will have this port IV. Our doctors had still (off the record) said moving the port up would be the best option but unfortunately this decision is left up to the surgeon because he is the one moving it. We asked for a second opinion but our surgeon is working until Monday so we are now waiting until then to figure out what is happening with Evelyn's port IV. The last two days Evelyn has started her chemo on top of her steroids. Giving her the chemo has been a quick process the last couple times - the nurses insert it into her IV and it drips quickly for about 20 minutes then flushes through. Our nurse stays in the room to watch Evelyn's port - make sure nothing is shifting and the chemo is going through the needle. Yesterday it was done twice and today only once. She's been feeling good so far and still making everyone smile. Here's a few more pictures:

We get a lot of visitors

This was at 11:30pm - someone wasn't tired so we wandered the halls

Five minutes after getting her needle reinserted - trooper!

Ice cream for dinner

Our nurses let Evelyn play with all the medical tools

She loves to wash her hands

Doing puzzles while her chemo goes through (notice the red liquid through her IV tube)

Charlotte wasn't feeling well and had an ear infection Friday and Saturday so I went to see her for the afternoon since she hasn't been able to come to the hospital 

Almost asleep after a walk in the halls

Playing doctor with Daddy

Good Morning Sunshine :)

Went for a walk outside this morning 

Even though Evelyn is here and going through this she hasn't stopped being a 1 1/2 yr old - I turned around and she was up there giggling

Then had pulled half the paper towels out and put them in the sink :)

New hat from Grandma Horsman

Psalm 119:165 "Great peace have those who love your law, and nothing can make them stumble"

Lindsey and Steve