Primary Children's Hospital Halloween Party

We took Dopey to see the Super Nurses at clinic on Halloween. Shh..don't tell anyone, he's not really allowed in clinic. We had to sneak him in..Snow White is not complete with out Dopey! We didn't have clinic that day but Presley had heard that the nurses were going to be Super Nurses and she wanted to see them dressed up. The nurses at PCH are SUPER. Without them I don't know where we would be today. They have answered a million question, calmed us, taught us so much about ALL, smiled, made our sweet girl feel safe and happy, give so many meds, calls us back with our many fears and concerns, talked us thru all this mess, laughed and cried right there with us. I'm pretty sure that's what super heros do! They really are the heros in our life. 
We then took the kids to the Halloween celebration at PCH. The kids decorated cookies, danced and made crafts. Crew stole the party. Everyone thought the kids looked so cute. I agree! Thanks for a fun party.

You can't see the capes very well, They are made from the chemo aprons and the famous purple chemo gloves! 

Bear Lake--Hopekids

It was our first official camping trip with kids. I think we need a bigger car. LOL! It looked like we were moving out of our apartment just for a 2 night camping trip! This weekend we got the opportunity to go to Bear Lake by the Utah/Idaho border. It was about a 2-hour drive from Salt Lake. Bear Lake was the perfect distance away for a fun weekend getaway. HopeKids planned the event and provided the cabins for us to stay in. This is my kind of camping. Restrooms, running water a heater, and not having to put up a tent! At the same time getting to enjoy camping food by the campfire. We got to our little cabin late Friday night. The kids were in heaven. Presley was excited that she was going to sleep on the top bunk. Crew was excited too but when it came down to it he wanted his crib! The kids enjoyed the new scenery and exploring new areas.  Breakfast was provided the first morning. We had Dutch oven for breakfast, egg burritos and hot chocolate. We stayed at the KOA campground and the whole place was filled with other HopeKids families. HopeKids is an organization that provides fun activities for families with life threatening illness. Their goal is to have something going on for the weekend for these families that they don't have to plan or pay for. What an amazing organization, we are so thankful for these types of organizations. We made new friends but also enjoyed time with our little family. Saturday morning HopeKids provided fall games, roasting marshmallows and archery. The kids also spent a lot of time at the playground and on the jumping pillow. This was a huge hit among the kids. This really was a great set up. Beautiful setting with the fall leaves, fun activities for the kids to stay entertained, perfect weather, and good dose of fresh air! We took the kids for a little scenic route to look out over the lake. This lakes' nickname is the Caribbean of the Rockies because of its turquoise colored water. We also stopped for the famous Raspberry shake. Bear Lake is know for the Raspberries. We made tin foil packets for dinner, these turned out really yummy. You can never have too many smores while camping so we made more! The kids loved the fresh air but also loved the cabin. I crocheted a hat for one of our cancer buddies. I love to crochet especially outside while camping and relaxing. The weather was just beautiful, cold in the mornings and night but the days were just perfect. Thanks HopeKids for a great weekend. Just what our family needed. A little stressful to get it all packed up but worth all the stress! The fall weather, fresh air, the space to roam with no commitments to meet, was just what the doctor ordered! I feel a sigh of relief and a bit more relaxed. And yes...Paul has already figured how we are going to build one of these little cabins one day!

MAW- Trick or Treating

Friday afternoon we went to the MAW (Make-A-Wish) Trick or Treating party. This was a great way to get the kids in the Halloween spirit. And great that I had to get the costumes done before today! The kids were so excited to see other kids dressed up and to get candy. Snow White and Dopey walked thru the office building collecting candy. Many of the adults would ask..."Is this Presley?" Even Paul wondered how they knew her. Most of them are working on Presley's wish and have seen her picture. MAW sure knows how to make you feel special. Thanks MAW for a fun Halloween event. The kids played games, decorated cookies, and got to take a pumpkin home.

Chemo for Snow White

Presley has been talking about this day for a while. When the nurses told Presley she could wear her costume to clinic she was exited and has been asking when shes gets to go as Snow White. Today is that day Presley, the day finally arrived. I finished the dress just yesterday. It has been mostly done but I always leave the lose ends until the last minute. Getting to dress up today made going to clinic fun but complicated to get her port in and out. But I wasn't going to let that get in the way! The nurses are always so sweet to make Presley feel special and today was no exception. The nurses are her friends. She sees them more than anyone else these days.

Our beautiful princess...Snow White. You are such a brave girl. Love that smile.  You are my hero.

Vital check for Snow White!

Getting port accessed and working on a craft.

The other kids were dressed up too!

Clinic was pretty routine today,  but getting to be Snow White was the best part! Presley's ANC is 800 and her platelets are getting a little lower. I have noticed her bruising and so her low number didn't surprise me. So Doc. Fluchel decided to not elevate the dose of Methotrexate and keep the dose where it was last round. This will help so that she will not bottom out or let her numbers get too low. I asked the doctor a million questions today. I listened to a webinar yesterday for an hour or so with Doc Rheingold from Children's Hospital of Pennsylvania.  Doc Fluchel did his fellowship there and knows this doctor well. The webinar was great. I'm such a nerd and love to read and understand Leukemia.

Can you see what she wrote on the white board...PRESLEY! Love seeing her write her name.

Presley...I mean Snow White also made a fun spider today at clinic! Mommy was paranoid..black paint! We made it through the day with no spills on the new dress!

Snow White in the nurses station trying to find the right band aid for her port! They are getting low on Princesses :/ 

Clinic Nurses...We LOVE you guys! Thanks for all you do for Presley and the other kids.

RTU Nurses. We had to stop by to our friends down stairs!

RTU Nurses (Where Presley gets her back pokes) I use to hate this place and never thought I would go back for a visit! 

 We are on the count down. Two more rounds of this phase and then we hit the long awaited maintenance. Really, I have mixed emotions about this. We will get randomized and see what arm she will follow on the study that she is currently on. So all the details are not known for sure. But it's sure she will take an oral chemo everyday for 2 years and a handful of methotrexate pills every Thursday. No days or weeks off. Unless they take her off the chemo due to her numbers being to low but they don't like that so they will try to avoid that. She will also get pulses (5 days a month) of steroids and you guys know how much I like those. Immune suppressed for just under two years...ugh. On the other side, will have less often clinic visits and lower doses of chemo, less back pokes, and her hair will grow back! Mixed emotions with that, we've loved the bald head but know hair is inevitable. Did I mention she thinks her hair is going to grow in pink! I always am a little leery of the new phase of treatment. I'm nervous to start and don't know what to expect so naturally I'm feeling the same about the next phase. But as time goes on I grown to like the phase and learn the ins and outs and know how Presley takes the chemo. I have been anxious about Presleys bone loss due to the steroids and sometimes the damage shows up in maintenance. As I learn more and more about childhood cancers and make more friends in the cancer community. I must be grateful and be okay with where we are currently at. Presley has the best diagnosis at the best age. No it does not take the fear I live with daily away but I find each day I search for peace and find more comfort in things I never did before. I love more, I'm attentive to others needs and heartaches, I pray more, I'm more sensitive. I have more patience. I value the little things in life and have more faith in my Heavenly Father. As I always say..the Lord does not take from us without giving back to us in other ways. I know I have lost some things but in other areas I have been given so much. Thanks so much for our faithful followers and supports. Your love and support carries us through these hard times. I am forever thankful for the role each of you play. We love you!

Presley's port access was hard today and I told her we could go to the Disney Store. Clearly her favorite place!

Wish

Today was filled with magic, wizards, the wishing room, the key, games, tokens and so much more. Presley was referred to Make-A- Wish Foundation! We were all invited to a special wishing ceremony. 

Here is what the invitation said:

It is our deepest honor to invite you and your family to come visit

 A Wishing Place for the special occasion of making your wish.

Please Bring this key with you when you come, 

for it along will open the Wishing Room

 at the top of the Wishing Tower.

We eagerly await your presence. 

About three weeks ago Presley got the invitation and key in the mail. She has been talking about that key and showing it to everyone. We have been talking about wishing and what that means. She doesn't really understand but is starting to! She tells us everyday, I want to see the princesses. She finally got to use that key today! 

 She was so proud wearing that key around her neck. I made a necklace for her with her key, a wish charm and a leukemia ribbon! 

This was the sign when we walked into the beautiful building. Side note...the building, land everything in the make a wish building was all donated. This place is amazing! We were greeted by our wish granters Mike and Kathy. They told us some of the history of Make a wish and details of the building.

We each were given a special token "wish token" to make a wish in the fountain. Each of us threw our token in and made a wish. The landscaping here at the make MAW (Make -A- Wish) building is breathtaking. What a beautiful, beautiful setting. 

We then went to the top of the wishing tower. We sat down and played a quick, simplified version of The Wishing Quest (a game made just for MAW). 
Everyone was given a card with a question on it. 

If you could be any animal what would it be and why?

If your pet could speak what would it say?

If you could live anywhere where would it be?

If you could meet someone who would it be?

If you could have a superpower what would it be a why?

We each gave our answer to the questions above. This game helps the children think about the possibilities of a wish and for the wish grantor's to get to know Presley a little better. 

Presley question was...if you could meet anyone, who would it be without hesitation she said...SNOW WHITE! Then the wish grantor's quickly said. Do you want to meet Snow White in Disney World? And she said YES! So Presley was given a piece of paper to write her name on a her wish. 

 Presley then finally got to use her key to unlock the wishing room. Once inside the wizards tower you submit your top three wishes into the wishing cone. This room is really amazing it had water "wishing well", interactive lights and music. The wish grantor's told Presley that the wizards will make a decision as to what her wish will be.

Kathy and Mike- Presley's Wish Grantor's

Following her thru the steps to complete the wish granting process and to give her wish to the wishing wizards.

Can you tell I really liked the changing colors...so did the kids!

They made this day special for Presley. We went back downstairs and the room was decorated with all the princesses and had homemade yummy cookies. They gave the kids toys and we filled out all the paperwork. Someone in the next few weeks the wish granters will make it know to Presley what her wish will be a it will become official. They have to clear everything from the Doctor and work on dates for the trip. Mom and Dad know where were are going to be doing!

I am blown away by this amazing wonderful organization. Presley has had so much excitement about her wish and her key. It really has lifted all of our spirits and given us something to look forward to. As parents of a 3 year old we had some say in her wish. I know that Disney World would be great medicine for each of us in the family. When children wish for a trip they get to take their whole family and Crew gets to be right with her. I'm grateful for this.  Having something to look forward to is HUGE for these kids with terminal illnesses. We are thankful for Presley's success rate of 90% It's hard when most days all you can see in your future is pain, medicine, doctors and being sick and isolated from other kids due to a low immunity. This organization has found a way to give these kids hope and a bright future. I'm so grateful and emotional day for me because I know that Presley, along with these other kids deserve something extra special and that is exactly what shes going to get. The letter that came in the mail along with the invitation and the key could not have said it any better. I cried when I read the letter written to us from the Director of Services at Make-A-Wish. I wish I could just copy and paste the whole letter in this blog post. 

"It is my sincere hope that this interlude of fun and respite will renew your child's ability to find and feel joy." It then goes on to talk about how many parents have a hard time excepting this extravagant gift from others. I remember that feeling when she was first diagnosed but then after the first hard month many families feel differently. 

The letter goes on to say that to often our friends, family are facing  dark, terrible days and its hard to know what to do but that the Make -A- Wish Foundation is a way to say, we care about your, we think of you.

"The process of fulfilling a wish brings great joy to everyone in the community who participates. By accepting a wish for your child, you are also giving hundreds of donors and volunteers the opportunity to create together a brief moment of happiness in a hurting world. It is always a rare and satisfying privilege in life to be able to do that. Please trust me that the "wish" event is as much a healing gift from you to your community as it is a gift from your community to you." 

Their hope is that this wish will provide healing, hope and cherished memories and to find joy again.

Thanks so much Make-A-Wish!

The wish gardens!