Persnickety, We Love You!

Sometimes people come into your lives and enrich your journey beyond what you thought possible. Even more special is what Emma and I have experienced in the last few months, teams of people! Companies have come forward to cheer Emma up, provide donations for her Cancer Can Be project and provide prayer. Elves and Angels, Livie & Luca shoes and Persnickety Clothing Company have gone above and beyond for our Cancer warrior.
Well they did it again! I was casually looking through my Facebook newsfeed when I found this blog post, http://www.persnicketyclothing.com/blog/2014/10/hello-emma-she-fights-like-a-girl-proud-of-it-and-so-are-we/
This company is constantly helping childhood cancer families.  The dress that Emma is wearing on

her blog page is the Princess Millie dress. It was designed by a Cancer warrior and the company donates all the sale profits to The Millie's Princess Foundation which helps childhood cancer families with expenses. A couple weeks ago you may have saw us post asking for help with a girl named Phoebe, that was all Persnickety! They see a need and jump in to help. We are proud to wear their clothes and promote their Princess Millie dress!

Make a Wish Picture Story

Yesterday our family traveled to Sacramento to have Emma make her wish. We arrived a few hours early to play in the historic down town area. We went out to lunch, saw ships and trains, said hello to ponies pulling carriages, visited a one room school house and walked around all the old buildings. It was a fun break from our everyday routine.

The Make a Wish palace was an interesting experience. They have the child watch a video on how to make a wish then they have four stations. I want to be, I want to meet, I want to have, and I want to go. They tried to get those out of Emma but she was very tired from not taking a nap so we had to help her.

We came up with,
1. I want to be a fashionista and dress up
2. I want to meet Lilo and Stitch
3. I want to have a new fancy bedroom
4. I want to go to Hawaii to meet Lilo and Stitch

They narrow that down to three wishes so they had Emma rank them in order of importance. The wish granters saw a pattern with Emma loving Lilo and Stitch so they transformed the meet wish to include Disneyland.

1. I want to go to Hawaii to meet Lilo and Stitch
2. I want a new fancy bedroom
3. I want to go to Disneyland to meet Lilo and Stitch

We will hear from Make a Wish in about two weeks with which wish they chose to grant and a time frame of when it will happen. Then a week before the wish comes true they hold a party for Emma and give her the itinerary. A huge thank you to Erica and Kim, our Make a Wish volunteers!

But She is Still Smiling

Today took a chemo turn. I had a pumpkin patch play date with two other families planned at a local farm. We were going to take pictures and play and have a fun morning. We got up, had breakfast and got dressed. As I was getting Cora, our youngest dressed Emma asked for a barf bag. This happens every Friday but she has never actually thrown up on a Friday morning. Usually if she makes it through the night we are good for the day. I went to get her one anyway. When I returned to the living room Emma yelled, "Too late." and she was right. Poor baby tossed her cookies. So there goes the playdate. We all got into comfy clothes and put a movie on, now we are on house arrest for fever watch.

See that is the thing about chemo, it is impossible to truly settle into a routine. She is usually sluggish but okay on Fridays, except for the two weeks when she had a virus and we ended up in the ER on Friday. But typically Friday is an okay day, just a slower day. Emma was sad we had to cancel but happy she got a movie day. She is wearing a smile on the couch right now watching Lilo & Stitch. I figure we will cuddle, paint nails and bake today. Hopefully she will be sick just that one time today.

As of yesterday Emma is two months into a 12 month chemo program. Later this month she is getting an MRI to see if the tumor is responding to the treatment. We are also going back to UC Irvine for a post op follow up and to get Emma a specialized eye exam to determine how much sight she has left. As of now Emma is legally blind but has a good amount of sight left in one eye, it is our mission to preserve that sight. To

Emma made me "coffee"

help her she may be fitted for glasses so her good eye does not strain from doing all the work. I think Miss Emma will be so cute in glasses and I am sure she will have fun picking out a pair, it will just be getting her to wear them and not take them off all the time that will be the hard part! I will also have to track down a pair that looks similar but has clear glass for her twin Gracie. I can already predict that Gracie will want to match.

Emma's calendar project is going well. We only have a couple more photo shoots and then we will be ready for printing!

I wanted to write a quick thank you to everyone who has sent us little pick ups lately. Getting fun mail really cheers us all up and we are so very grateful that you continue to remember us and lift us up! As this goes on some of it will become routine and get easier but in many ways it will become harder. It is all of you
at our side that makes it possible to continue. Also a huge thank you to everyone who went gold with us for the month of September. Thank you so much, we love you!!

We Have Hearts of Gold

Our little Emma is doing well lately. She seems to have hit her stride with the chemo and settled into

Emma with her twin Gracie and baby sister, Cora

a routine. Oddly enough doctor visits are helping us with homeschooling. I have been teaching the girls time words; yesterday, today, tomorrow, and the days of the week. Emma meticulously goes over which day today is and tells me how many days she has until her doctor appointment. "Mommy today is Saturday, no doctor. Go to doctor on Thursday."

Stopping to smell the flowers

We heard back from Make A Wish today and set a date to travel to the Make A Wish Palace in Sacramento on the 11th. Emma gets to make three wishes and the volunteers find a way to grant one of them for her. We are really excited to do something fun outside of the hospital. I think we will make a day of it in Sacramento and do some sight seeing!

As September comes to a close and we say good buy to Childhood Cancer Awareness Month let us walk away with gold imprinted in our hearts. It is not about a month, it is about a war. An epic war on pediatric cancer. This month was filled with amazing news and sorrow. A soul we knew won ended his battle and went to be with Jesus. A loving mother who runs a nonprofit to help families with children fighting cancer faced her

Emma and Gracie at Farmer's Market

daughter's birthday with her little girl in heaven and not at her side. This month also brought a new chemo drug for pediatrics which is currently getting FDA approval. It has a 90% success rate in killing sarcoma. This is great news and we hope it paves the way for a drug to cure Emma of this evil forever. It was a month of highs and lows but the month of gold will live on in our hearts. Take it with you, keep your hearts gold for Emma, and continue through out the year to raise awareness for the lack of funding for childhood cancer. Keep it gold.

Bring On Autumn

My favorite time of year; pumpkins, spices, holidays and the best weather for our town. The mornings are cool and crisp, the days are just warm enough and the nights finish us off with orange

and red skies. I wish I could bottle up Autumn and carry it around on bad days. Emma shares my love of Fall. We can feel it coming. She woke up Monday morning ready to experience all that the season could offer so we went to a local farm with friends. We played, we fed chickens, we ran through the hay barrel maze, we were kids. It was a nice break from reality.

Emma with our Nature Table

Even our home changes for the season, our homeschooling Waldorf table changed from Summer themed to Fall themed. I switch out our clothes and toys for things that work in Autumn and I have Cinnamon, Orange and a blend called OnGuard going in our home oil diffuser all day to make our home smell like Fall.

We heard back from Make a Wish this week, Emma should be going in to make her wish soon. We are excited for something different! Brad keeps joking that Emma will be drawn to a picture of a football team and a family who could care less about sports gets to meet the Packers...I joke that Emma is going to wish to meet a celebrity not because she actually likes that person but because she is drawn to the dress that woman is wearing in the picture! Who knows what will happen but we are just happy that Emma gets to do something magical. Some of you have asked if I could make the wish for her what would I wish...I would wish for a family vacation. Anywhere but here! We have never been on a family vacation and Miss Emma loves the beach and pools. Somewhere fun and relaxing...that's what this mama would wish for! And if it happened to have a spa and a drink with a teeny umbrella that would be even better.

I made an 8x10 flyer for Emma's calendars, feel free to save the photo to your computer and make copies. We need more cancer warriors to sign up for free calendars so please get the word out!

Add caption

Tomorrow Emma goes back to long appointments and two chemo drugs. It was nice to have a two week break of only one drug but like all good things it came to an end. I am hoping that she does better going back on both, it seems that the one she had a break from is the one causing all her undesirable side effects. It was so nice to have two weeks of Emma eating and drinking normally. Poor baby is starting to lose some weight, there is not a huge difference on the scale but her clothes are falling down and I had to go back to some of her smaller sizes recently. Please surround us in prayer as we try to get Emma to gain a little weight and stay healthy.

What Started It All...

It was October last year, not September but I have been reflecting a lot lately on our journey since it is Childhood Cancer Awareness month. This was the picture that started it all, this simple, everyday picture of Emma at a pumpkin patch. It was after I saw this picture that I knew my husband was not overly sensitive about Emma's eye being "lazy" or "turning inward", there was something wrong with my baby. It was just a normal day, just a picture from a pumpkin patch. My world changed forever.

That picture lead to research on local pediatric eye doctors then a wait for an appointment. In November we finally got her into a local specialist. "I hate to say it, but I see something...maybe a tumor". Wait, what? My kid was supposed to have a lazy eye. I was supposed to be sent home with eye patches and a perscription for glasses, possibly a date for corrective surgery. No. I was sent home with a referral to the Children's Hospital and a date with an MRI machine...on Christmas Eve.

It could have happened to any child but it happened to mine. My child was diagnosed with a gene mutation on the 17th chromosome called Neurofibromatosis One. When I was told what Emma had I couldn't spell, pronounce or even remember that name. I just knew that it was responsible for hurting my child, so I hated it deeply. We were told that these tumors were very rarely cancerous so not to worry and we would just monitor. Well monitoring brought forth the knowledge that rapid growth was occurring in the largest tumor wrapped around her eye. This lead to a debulking surgery which lead to our final destination, cancer. Cancer. Shit. My child has cancer. It could have happened to anyone but it happened to us. My baby who already fought a NICU battle. My child...


It's hard to watch, believe me I know, it is hard to watch. The teeny sick children with bald heads. It is heartbreaking. But looking away is the worst thing you can do. Why? Because this time it was my child but next time it could be yours. You never know what will lead you to your diagnosis but when you hear the words cancer and look down at your sweet child you will wish there was a cure. That
there was a better option then the list of side effects handed to you by your pediatric oncologist. You will wish there was a surgery to remove it, a pill to kill it, a therapy to lessen it. But instead you have a list of side effects and prayer.

Nearing Emma's anniversary of this journey we ask you to help us spread awareness. Tell Emma's story, find another children who fight this battle to love and support, donate to pediatric cancer research. Fight with us to make politicians and pharmaceutical companies take notice. And pray that there is a cure found soon for our Emma. Something that doesn't just buy us time but kills this horrible disease forever. Something that will not come back as a new demon in a few years. Heroes like these children deserve a better life, a full life that doesn't involve weekly chemo treatments. Help Childhood Cancer go viral so we can move forward and save all our children.

Dressed for Emma

Today we had a fun shipment of shirts, a couple weeks ago a friend of ours offered to screen print a couple shirts for the family. I sent them a logo I created and they made us amazing custom creations. The girls all look so cute in their matching outfits! Thank you Katie and Derek for donating your time and resources!

In other news poor Emma was throwing up all night / morning. I realized after we were about two hours out from the hospital that I only saw one vial not two when Emma was given chemo...that could only mean one thing, she did not get her anti nausea meds. Sure enough around hour 12 the nausea hit. Today the laundry was going nonstop and this Mama spent many hours cleaning. Oh the joys of chemo treatments. She is much better now, usually the nausea is only for a couple hours. Luckily she has had a healthy appetite to make up for it today.

After this week I am ready to get out of this house! I caught the virus Emma had that sent her to the ER and our youngest decided to join me. Gracie and Daddy managed to escape it all and sneak away with no illness. That made us under house arrest for another week. We love our home but this family needs to get out now and into some sunshine! Hopefully we can all get some fun in over the weekend.