Make-A-Wish

Make-A-Wish

Back in December Erin was selected to be a Wish Kid through the Make-A-Wish Foundation in Utah.  She received this cool hat and key in the mail.  Erin was super excited about the key, especially when we told her that it would open up a Wishing House!  We had a fun time trying to get the hat to stay on.

She kept laughing so hard when the hat would fall off.

In January, our family went to Salt Lake City to visit the Wishing House.  Previously, I had talked and talked with Erin and tried so hard to prep her in picking something that she really really wanted for her wish.  I tried to explain what a "wish" was, but I wasn't sure that she really understood.

When we got there, this big poster was by the front door welcoming Erin!

Erin met with her wish granters.  However, she was all over the place, running around, jumping on the furniture and playing with toys.  It was hard to contain her excitement.  She wanted to play and wasn't all that interested in talking.  But, her wish granters pulled out some pictures of possible wishes that she might have.  The pictures were of a playhouse, Disney Princesses, a Dora the Explorer bedroom, a playground, and a Disney cruise ship to name a few.  They asked Erin to pick one that she liked.

She immediately picked the Dora the Explorer bedroom and then went for the picture of the Disney Princesses.  They asked her which one she wanted the most.  She picked the Disney Princesses.  They asked her if she would like to meet the Princesses.  Of course she yelled, "yes!"

As far as a wish goes, the wish kid is invited to pick 3 wishes in case the granters aren't able to make the child's first wish happen. Erin only put in two wish requests.

1. Meet the Disney Princesses

2. A Dora the Explorer Bed 

Here she is putting her wishes inside a gold tube.

She took the gold tube to the wishing tower room. 

The first video below is of her opening the wishing room and then each of us telling Erin what we would wish for her.  The second video is of her putting her wish in the wizard's hat complete with a water fountain, flashing lights, and magical music.  It makes me emotional just watching it and remembering the feelings I had as I watched her make her very own special wish.  She was so excited about it all!

All of us in the wishing tower room with the wizard hat!

We received a phone call recently from Make-A-Wish letting us know that Erin's wish has been granted.  She is going to Disneyworld to meet the princesses.  Our family will get to stay at the Give Kids The World Village in Florida.  It is a special village only for wish kids and their families.  We will be going to Disneyworld in June.  It is miraculous timing because her trip falls exactly a year after she was diagnosed with AML.  Even more special, is that she will turn 3 years old while we are at Disneyworld.  A much better birthday celebration that when we celebrated her 2nd birthday in her hospital room getting her head shaved.  We have set up to have a luncheon at Cinderella's Castle on her birthday.  She cannot stop talking about it! 

Make-A-Wish is such an amazing foundation!  They have helped us to forget the awfulness of what our family has just been through.  They have made us feel so important and they have given Erin so much hope and something really special and exciting to look forward to.  Sometimes at night when I am tucking Erin into bed she whispers to me that she made a wish at the wishing house and that she gets to meet the princesses.  June just can't come soon enough for her!

The Star Performer

2 Month Clinic

Erin and I went to Primary Children's for her 2 month clinic today.

We were a little early arriving at the lab to draw her blood, but it turned out being great because there weren't any other patients there so we got in very fast.  Erin is seriously ONE TOUGH GIRL!  I am continually in awe at how much she understands about what she has gone through and about what she still has to do.  She is amazing! 

They draw her blood by sticking her on the top of her hand while I hold her so she doesn't squirm too much.  Our family is a little odd in that all three of our kids absolutely hate band-aids.  The band-aid is usually worse than the shot or needle stick.  So of course, when the nurse slapped a band-aid on Erin she promptly ripped it off which resulted in blood dripping all over her pants, my pants and my hands as I tried to stop it from spilling out of the open hole in her hand. 

Tangent here: I have been trying to donate blood recently.  I usually am very successful at this as I have been donating blood for 14 years now.  But, lately it hasn't been working.  I went last week for a blood drive.  They rejected me once they looked at the inside of my elbows.  They said I had too much eczema in the area where they would stick me with a needle.  I rarely have eczema, but that day I did have it and they didn't want to stick me and possibly contaminate the donation.  So now after today, I have to add that I have "been in contact with someone else's blood" to my list of reasons why I cannot donate at this time. 

Back to the clinic visit. We got to the Hematology/Oncology Clinic a half hour early, but they got us right in.  We were the only ones in the waiting room.  I love getting the last appointment of the day, everyone is so relaxed.  We chatted with our nurse and then with a UofU Medical student about a new study that Dr. Fluchel (our Primary Oncologist) is doing about "Factors Contributing to the Burden of Childhood Cancer Treatment on Patients and Their Families".  I am really excited to participate in this research study.

We visited with Dr. Verma for almost 30 minutes.  I love her so much!  Erin showed off her ballet skills and told Dr. Verma her "knock knock" joke I shared in my last post.  We had Erin's sore checked out and it's bigger than it was at her visit last month.  There are so many unknowns about this sore.  I think that time is really going to be the biggest factor here.  We just have to wait and see what comes of it.  Hopefully it is just a bunch of scar tissue that is chronically inflamed and soon it should start to absorb back into her body and eventually she shouldn't have any scar or sign of it.  That is our hope.  If it continues to flair up and gets bigger than we'll be back to doing ultrasounds on it to monitor what is going on.

We met with Dr. Fluchel and he is really happy with Erin's progress.  She only has to take the Septra (anti pneumonia) for one more month!  Wow, to be free of all antibiotics! 

Labs from 2 Month Clinic

White Blood Count 4.7 (normal 6.0-17.0)

Hematocrit 38.6 (normal 34.0-40.0)

Platelets 202 (normal 150-400)

ANC 2200 (normal 1500-8500)

Previous Labs from 1 Month Clinic

White Blood Count 5.3

Hematocrit 37.9

Platelets 218

ANC 2900

P.S. For the last 30 minutes of our drive home, Erin told me 100 or more knock knock jokes.  I wish knock knock jokes had never been invented.  She was getting really creative with them.  For example,

Knock knock?
Who's There?
Pick from any of the below:
Tree, toes, mountains, snow, two trees, hair, car, hospital, Mom, Dad, Erin, Dr. Verma, orange, lettuce, banana.

Knock Knock

The kids have been really into knock knock jokes lately.  So much so, that we have to ban them once in awhile.

My favorite one from Erin today:

Erin: "Knock knock"

Me: "Who's there?"
Erin: "Hair."

Me: "Hair who?"
Erin: "Hair is growing up"

She thinks that since her hair is "growing up" in the same way that she is growing up into a big girl.  I love her personality!

On another note, I am starting to get concerned about her cellulitis sore on her bottom.  Yes, it's still there.  In December it was decided that all was left was scar tissue and the doctors said that it would most likely absorb into her skin and heal within 6 months.  But just this last week it has started looking more red and it's twice as big in size.  We have an appointment on Thursday so we'll have it looked at then, but I'm just mystified that we might have to start dealing with this sore again.  She has had it since about October.

Pictures And Some Updates

Maestro Erin.

Note the blue stool below her - this stool goes EVERYWHERE with her.

The kids did a "night party" dance for me.

It was some sort of dance they made up that involved

holding a flashlight and dancing with the lights turned off. 

Erin thinks she is "Angelina Ballerina" in this one.

Erin thinks that anyone who dances is Angelina Ballerina.  In fact, on Saturday night we went to the Kent Concert Hall to watch Cecily perform in the USU Youth Conservatory Monster Concert.  The Monster Concert features a monstrous 20 pianos onstage being played all at the same time, about 400 kids participate.  A monster does silly things between the pieces.  One time he came out and did a little dance while some students were playing the Hava Nagila.  Erin kept yelling out that the monster was Angelina Ballerina.  She couldn't get over it and ever time he came out after that she would laugh and say, "he's Angelina Ballerina." 

Erin has had a runny nose for roughly 2 months now with no other symptoms.  I took her to her Pediatrician and now she's on a 5 day course of Azithromycin.  I hope it clears things up!  She is still taking Septra to prevent pneumonia.  She is nearly accident-free potty trained and she is in the midst of the terrible twos.  She has found energy that she never had before.  It is wonderful!  She has her 2 month check-up with her Oncologist at Primary Children's next week.  I am always anxious for these visits to come and to go.  It's a crazy roller coaster of emotions and we just do our best to move on and keep cancer out of our minds.

I Am Strong

Wow, a tear jerker of a song,

but so beautiful all at the same time.

The Grascals and Friends

"I Am Strong"
This video was inspired by the patients
from St. Jude's Children's Research Hospital

Opportunities

I think that so many of us out there are looking for ways to serve and help others whether as an individual, an eagle scout project or with a youth group or club.  Since cancer has altered our life so much, I have become on fire about anything cancer related.  I thought I'd list some of my favorite sites and books about cancer.  Take a peek.
 
Alex's Lemonade Stand Host a lemonade stand for childhood cancer research

Cookies For Kids Cancer Host a bake sales for childhood cancer research

Crochet For Kids Cancer 10% of sales goes directly to Curesearch for childhood cancer research

Primary Children's Medical Center Eagle scout projects

Festival of Trees Every penny raised helps children at Primary Children's Medical Center

Ronald McDonald House  Eagle scout projects

Ronald McDonald House  Service projects or youth group activities

The Emperor of All Maladies A biography of cancer by Siddhartha Mukherjee

Ties For Humanity 50% of proceeds goes to a charity or organization to fight disease.

A Little Hairdo

Erin's hair is growing so quickly and it's so much fun to see how much it has grown each day.  Today was the first day that I have tried to "do" her hair.  A little gel and a clip (that stayed in for about 5 minutes) made her look a little more stylish, and a bit more like a girl.  Erin is loving having her hair grow back. 

I think she is just too cute!