Home!

We are home! Got here about 10a. E took a big nap. Then she wanted to see her port. Formerly named Ariel, she has now decided its name is Belle.

Thank you for all the notes, love and prayers today. We are happy to put this particular chapter behind us!

Surgery is finished

She is out of surgery. All went well. We are waiting to see her!

Surgery about to start

They just took her back to start the surgery. The happy juice was making her relax before they took her. She was saying "This makes me soooo silly!"

New PJs

New pjs and slippers from Nahna and papa Wythe to wear to the hospital tomorrow. They are really fun!

Surgery Call Time

Just got the call: We have to be checked in at 6am tomorrow. Surgery is scheduled for 7am. Whew, that will be an early morning. The actual procedure is about 30 minutes. But overall, we'll probably be there until about 9am.  

I know it is a "standard" procedure but it is still a surgery, which makes us worry. We'll be glad when it is over and we are all home tomorrow. We'll post updates as we have them.

Lucy-isms

Lucy is one of Evelyn's school friends. Over these past few months, Lucy's mom has emailed me the sweet and funny things Lucy has said about Evelyn. It always makes us smile. Things like: Role playing at home and making Lucy's mom be Evelyn. When they are stuck in traffic, asking if Evelyn is stuck in traffic too. Extending her prayer list to now include Evelyn, Audrey, Evelyn's mom and dad, and now our house.

The most recent "Lucy-ism" was especially cute. Too cute not to share. It made Evelyn laugh and say "Oh Lucy!" Hopefully it will make you smile too. On Thanksgiving, as they went around the table, Lucy told her family she was thankful for "Potatoes, Evelyn McKnight and Chick-fil-A!" A great combination of things to be thankful for :)

It is official!

We finally received the X-ray results. All was good. Evelyn is officially off therapy!!

Good news day

When we woke E up this am she pointed out the window and said it couldn't be time to get up yet because it was still dark. Smart girl! We had to get up anyway and head to our doctor filled day. First, she peeked in my closet, ran to me in the bathroom and said, "Mommy, did you get another Rapunzel for me?" Sneaky girl! She saw her surprise for today's doctors appointments... Rapunzel/Flynn wedding toys. Big hit! She carried them through the hospital today.

She collected lots of stickers today. One or two with every stop we made.
X-rays first. She hopped right up and let the lady do what she needed, no problem. Then to the ultrasound. That took more persuasion... In the end, all was good. We had to do a second x-ray to get a clearer picture.

Then up to oncology. She made daddy get his finger pricked first. She told him it would hurt a little bit. Very funny. Not so funny when it was her turn! We go back for scans and bloodwork in February, a few days before her 4th bday, for her next checkup.

We are still waiting on the X-ray report. But the ultrasound was good. Her bloodwork and urine were great. Her weight is holding steady at 32 1/2 lbs.

Our last stop was pre-op with Dr Turner, who we just love. He move E to the number one slot for surgery Friday. An earlier day than today, but home sooner.

We will post an update when we get the X-ray results. Hopefully they are clear and we will still be good to on Friday and be closer to recovery!

Big day tomorrow

Tomorrow is going to be a long day at brenners but one we have been looking forward to for awhile now. We go in at 8am for an abdominal ultrasound and chest X-ray. This is to make sure there are no signs of the cancer returning. Then we meet with the oncologist for our "off therapy" protocol. (Yay!!) Then with the surgeon to talk about the port removal surgery on Friday!

A long day but even E is excited about it. She is going to tell Dr Turner that she wants to keep her Port. She calls it Ariel so we had to talk again about how it isn't really going to look like Ariel the mermaid. :)

We will keep you posted on how the day goes tomorrow!

Happy Thanksgiving!

With the holidays approaching and the year coming to a close, I have been reflecting on 2012. This year has been especially eventful with a lot of highs and a lot of lows. Overall, definitely a better year than it could have been.

Audrey, our youngest, was only 12 days old when 2012 began – now she is practically walking. Evelyn was just turning three and still seemed like a toddler – now she is so sassy and looks like a little girl. We moved from our first house, the house we brought Evelyn home to from the hospital when she was born, into a new house. And, we almost lost Evelyn. As I type the words, I still have trouble even believing it.

I am thankful for so many things this year. Things I never thought our family would face.

• Thankful my husband is so observant and spotted the tumor.
• Thankful for the pediatrician who recognized a problem but did not freak us out.
• Thankful for the doctors and nurses at Brenner’s who removed the tumor and treated Evelyn with such care.
• Thankful to my mom for giving up her daily life to move in with us and help care for our children. Thankful to my step-dad for understanding.
• Thankful for the tremendous amount of love and support shown to us by our family, friends and people we have only met through this near tragic event.
• And, most of all, thankful Evelyn is still here with us. I can’t imagine my life and our family without her.

We wish all of you a very Happy Thanksgiving! Hug your family, children and friends tightly.  And please know your support and encouragement has given us strength.

Surgery scheduled

E's surgery is set for friday, 11/30. We will get all of the details on 11/26 when we meet with the surgeon. Exciting and a little scary all at the same time!

Bribes Work (usually)

We headed to Brenner’s today for blood work. The typical check 10 days after treatment to make sure her counts are okay. On the way to the hospital, she asked, “When can I go back to school? All of my slugs are gone!” We talked about how her body had to recover. That she will start feeling better and getting her numbers (weight) up. Then she’ll be able to go back. Seemed to appease her for the time being. We are so lucky she loves her school and her school friends so much! 

The actual visit was mostly uneventful. She was quiet and "unhappy" as we entered the parking deck. And she let everyone know she didn't like having her finger pricked but MUCH easier before and after than it has been. Maybe she is getting used to it. Maybe since it isn’t going to be so often from here on out she is accepting it. Or MAYBE it is because, as a bribe, I downloaded the $4 Minnie Bow Maker App that she’s been begging me to purchase. Either way – a better visit! 

Our next trip will be on 11/26 – abdominal scans, pre-op visit with the surgeon and “off therapy” consult with the oncologists.

Wish Kid

Last night was the Walk for Wishes at Tanglewood Park to raise money for Make A Wish. Nahna and I made yellow scarves and yellow blankets (gold is the color for childhood cancer awareness) and ironed on little ladybugs for our team. "Evelyn's Team" was Nahna, me, Audrey, Evelyn, Treffrey, Molly, Amy, Cheri, Rob, Charlie and Charlie's grandparents. 

It was a very fun yet very emotional evening. It hit me harder than I thought it would. We never thought we would be there as a family being granted a wish. We were surrounded by families telling their stories -- surrounded by people who had either lost their children to a terrible illness or came too close to losing them. E knew we were there to celebrate her beating her slugs. I will always be glad she never understood what those slugs could have done to her.

When we got there, E got to sign her name on a banner and write down her wish. She made a great "E" and I helped her do the rest.

There was a lot of great entertainment - a bouncy house, cotton candy, music playing, several booths. E and Molly had so much fun running around and being silly girls.

Audrey, Nahna, me and E

Molly, E and Charlie (so busy. too hard to stop and pose!)

E and Audrey

Cotton Candy!!!!

All of the wish kids were called to the stage to tell their name and their wish. E and only one other kid were "waiting" for their wish. E wants to go to "fairytale land" (Disney). The other kids had been granted their wishes. 

They all received special medals in the shape of a star that read "Wish Kid."

Off we went to see the lights. Molly and E laughed and laughed the entire way.

At the end, the road was lined with posters honoring the teams. This was Evelyn's poster!

I think we are meeting with our wish grantors in the next week or two! 

Walk for Wishes

Evelyn is being granted a wish by Make A Wish! Knowing she will have a special wish granted at the end of all of this has been very exciting for her. There is a walk on Saturday through Tanglewood Park's Festival of Lights to raise money for the organization. 

Come walk with us! Sign up to join "Evelyn's Team" at the following link:
http://walkforwishestriad.kintera.org/faf/home/default.asp?ievent=1024629

Or donate to Make a Wish here:
http://walkforwishestriad.kintera.org/faf/r.asp?t=4&i=1024629&u=1024629-363404122&e=6221435428

Feeling Better

E is feeling better. She even went to play in the playroom for a little while. So far, this has been a much milder weekend than in the past. That last slug was too weak too fight too hard :) Thank you for all your prayers as we push through this last treatment weekend.

Treatment #14, The Last One!

It is with a huge since of relief and amazement at the strength of my daughter that I say - We have finished chemotherapy. Today was Evelyn's last treatment. Last night, around 10pm, E was too wound up to sleep, she said, "I have ONE slug left and tomorrow we are going to get rid of him!" That's right baby girl!

Aunt NuNu (my youngest sister) went with us today. Aunt Kathryn, my middle sister, has a birthday today. E's last treatment is a great way to celebrate a birthday!

It was a long morning but we filled the time with fun activities. We checked in and got E's numbers. She is 32 1/2 lbs, which is great. Dr McClain popped in to praise her for coming so far. As usual, he said, "Wow, she hasn't lost her hair." Nurse Karen accessed her port to get Mr Red to send off to the lab (a traumatic event), and then we went to paint. E loves to paint. Then, we made 2 pillowcases (one for her and one for me). She put the fabric over her head and said "whoooooo". Then would take it off and say, "It's only Evelyn!"The same ladies who were there for E's first trip to the clinic where there today for her last treatment. It was like coming full circle. 

She collected a lot of stickers today - all over her clothes, mine and daddies. After her treatment, she picked out a special purple heart bead to put on her Beads of Courage symbolizing the completion of her treatment. She was very proud of it. She got to pick out a toy from the BIG toy box - a baby giraffe. Several of the nurses clapped for her - This took her by surprise! It was really sweet. 

E was most excited to show NuNu the cafeteria. Then we went home for a special surprise - a little Jasmine doll and castle. We have been trying to find that doll since treatment started! She has been introduced to the other princesses and they are getting along well.

We go back in 10 days for blood work. Then on 11/26 for scans and to meet with the surgeon for her pre-op! She's decided she wants to keep her port once Dr Turner takes it out. A lot of the kids make them into bracelets. (We'll see...)

The rest of the weekend may be tough, but we are taking a great deal of comfort in knowing it is the last weekend of its kind!

It is finally here...

Evelyn's last chemo treatment is tomorrow! It is hard to believe how much we have been through in 19 weeks. How much our lives have been forever changed.

Every time I look at her, even when it is in frustration, I am so thankful she is here for me to look at, hug, kiss and put in time out. To think, at the beach, we had thought the bump was, worst case, a hernia...