The Ladybug Carnival

Today was the Ladybug Carnival. The turnout was great. The kids crafts and games were a big hit - all ladybug themed, of course. And the raffle and auction items were fantastic. We really wanted to bring Evelyn. She would have had a great time!

Thank you to the staff and families who worked so hard to hold this wonderful event for our family. And thank you to everyone who came and showed your support. There really aren't enough words to show our appreciation.

We are so blessed in so many ways: We found the tumor early. She has tolerated her treatments better than we anticipated. We have a very supportive network of family and friends. Some friends we met since Evelyn's diagnosis and some we have known a very long time. Some we have received notes of encouragement from and haven't met in person. Evelyn is on prayer lists through chains of people we have never met. 

Tonight I told her: "A lot of people love you very much. Do you know that?" She said: (head nod) "And they want me to get better!"

Ladybug Carnival

This weekend is the Ladybug Carnival. Her school has organized this event with several great raffle prizes and auction items, activities and crafts. We are so thankful to all the school staff and families have done for us. It sounds like it will be a lot of fun!

Funnies

Two funnies from this bumpy weekend. First, within 2 hours of Evelyn feeling better, she was already being so sassy that she ended up in timeout. Second, Audrey was playing with the puke bucket. It was clean of course. But it still cracked us up!

Smiles!

Love this smile! So glad it is back. And, she just devoured a cupcake and asked for some macaroni and cheese!

Update

Evelyn slept well through the night. I slept beside her on the floor. She woke up at 4:30am. Just in time for more medicine. Back to sleep. We woke up at 8am because our cat was meowing and meowing outside E's bedroom door. E stayed in be until about 10am.

She got up and was sick 2 or 3 times until 11:30am. She had more medicine at noon and a tiny snack at 1p. We have been watching all the movies that make us feel better: Toy Story 1 and 2 and Shrek. She is napping now.

Her spirits are up a little. Fingers crossed after nap she will start feeling more energetic and ready to eat a little more. In her little glimpses of feeling better she gets excited about playing with her friends and asks what kind of princess dresses they have. :)

Treatment #12

Today was a roller coaster day. E was so excited to see Nurse Karen today. She was running circles around Audrey as we got ready to leave the house. Then we got to Brenners a little later than usual and the clinic was packed. We sat in the waiting room and saw everyone except N. Karen. E was getting a little attitude about it. She was not happy. Finally, we saw her and all was better. Much happier. Then, she drew blood from her port and put the bandaid on it because we had to wait for blood tests to come back before getting chemo. E does not like the bandaid that goes over the port. It is extremely sticky and no fun to take off. She started crying and asking to go home, a lot. It took awhile to calm down.

Next, the doctor comes in and explained how the higher doses of the "V" drug could lead to more bone pain (and other side effects) and we may need a pain medicine prescription if Tylenol doesn't do the trick. Awesome. Automatically increased the size of the pit in my stomache two fold. (She gets a higher dose this time and the next 2x).

We go home and she is in a great mood, happy and playing. 5:30pm hits - she throws up 6x until 7pm. It took trying to give her the nauseau meds 2x to get them to stay down. She went to bed right at 7pm and has been sleeping since. Hopefully her tummy has settled down and she will make it through the night.

My poor baby girl. She only has two more treatments but I think these are going to be the hardest.



Side effects

This weekend E got her first mouth sore. It didn't seem to bother her too much. The way we found out about it was overhearing a conversation between E and her friend Lilly. It went like this:

E: My slugs make my mouth sore
Lilly: Well, let me tell you what you need to do. You need to brush your teeth.
E: What type of toothbrush do YOU have?

It was really cute. Still, Hoping this is the only mouth sore.

Also noticed over the last few days her hair is thinning more. My guess is it will all fall out just as we are wrapping up with all of the chemo. Maybe not. We will see...

Princess Ball, Arts for Life Fundraiser

Princess Evelyn went to a ball fit for a princess this afternoon. It was a fundraiser for Arts for Life, a non-profit that brings art to children, siblings and families dealing with serious illnesses (http://www.aflnc.org/). Princess Molly and Princess Elizabeth were in attendance as well. 

Each princess was royally announced as they were escorted to their seats with a rose in hand. They got autographs from princesses, danced with princes, danced with each other. It was a grand ole time. Evelyn was simply beside herself! 

No Doctor Today!

This is the first Friday in over three months that we haven't had to go to Brenner's! Something fun was in order. After talking with her doctors, we determined the zoo at the Science Center was safe enough, as long as she didn't touch any of the animals. (Yes, keeping her in the stroller was a bit of a challenge). E was so excited! It was a beautiful morning to not be at the hospital.

Next week we have double meds and the Vincristine will be a higher dose. But until then, we have a whole week with no medicine. Maybe some of the tingling will go away between now and then. 

Feeling Better

Evelyn is much better. Her fever broke Sunday night. It must have been a 24-hour bug. We are so thankful her body was able to fight it off!

Fever

E woke up today with a fever of 100.5. Her first fever since all of this started.

Immediately we called brenners. If her body is too weakened by the chemo she won't be able to fight an infection. The doctor was in her way into the office. She said to call back if the fever hit 101, which it did at about 4p.

The doctor looked at E's bloodwork from friday and said her counts looked good. She wasn't concerned about her being able to fight off an illness. (Phew no trip to the ER today) And we got the go ahead to give her some Tylenol. Boy did the Tylenol do the trick. She is feeling so much better. We will just need to watch her over the next few days to make sure she is improving.

Treatment #11

Last night, we laid out E's clothes in preparation for going to the doctor. Nothing but the red skirt would do because, as I was informed, "it is really spinny." This morning she was full of excitement. But when it came time to put on her magic paper, she did NOT want to cooperate. She remembered the bandaid from last week (when they access her port and have to leave it accessed while we wait for blood work, they put a really sticky, really big bandaid over the butterfly). Finally, we got the paper on and we were off to Brenners. Off to see Nurse Karen!

It was a "V" day, which makes her a little tired but overall she does ok. The exciting news - Today was our last weekly treatment!!! We have next Friday off from clinic. So exciting! We are going to do something super fun next Friday instead (hopefully we can figure something really fun out!).

We are in such a different place now than we were 11 weeks ago going into clinic for chemotherapy. E is so confident and excited instead of so scared and unsure. We are the same, as we've learned what to expect, know how she will likely react and hoping that things remain "steady". It is just a part of our lives and what we do now. Our new normal.

The headache and vision issues seem to have cleared up. At least the headaches have gone away. She hasn't come right out and told us things are fuzzy. And when we ask, sometimes she says yes and others no. Time will tell...

She got a "baby snail", now named "Rainbow", out of the toy box today. Rainbow has been everywhere she has been today: safely buckled into her car seat with her to now safely tucked into bed fast asleep.

Slugs?

Evelyn had an okay weekend. She had two near throw ups but no actual episodes. Her energy level was down, as was her appetite. But both have picked up.

Today she saw a rock on the floor and said, "Look! One of my slugs fell out!" It was pretty funny. She saw it again later and said, "Ooh! My slug!" Of course we explained it was a rock.

On a walk around the neighborhood, we saw an actual slug and pointed it out to her. She asked if that was what her slugs looked like. We didn't realize she was thinking she was filled with real slugs. We had always talked about them as cancer slugs, different slugs. That was an interesting conversation trying to explain outside, regular slugs and cancer slugs. Hopefully now she gets that her slugs are not the slimy icky things we saw on the ground. Poor baby! She was probably having nightmares over that one!

Beads of Courage

We finally started Evelyn's Beads of Courage necklace. We had several events and weeks to catch up on. And, of course, I wanted them in the correct order of events. Each color bead represents a different act of Evelyn's story of courage: Hospital stays, surgery, port placement, scans, ER visits, blood draws, chemo, clinic visits, special acts of courage. We put them on the string and talked about what each one meant. She is really proud of the story behind why she earned each bead.

We will have many more beads to add as we continue Evelyn's story of conquering these mean old slugs. With this necklace, we have a positive, physical representation of all she has been through and faced with such strength and perserverance. A story she can share with her kids one day (many many many many years from now. many years.).

To learn more about Beads of Courage: http://www.beadsofcourage.org/