Monday, September 29, 2014

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.

Wednesday, September 24, 2014

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.

Saturday, September 20, 2014

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.

Friday, September 19, 2014

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.

Wednesday, September 17, 2014

Cancer Can Be...a Work in Progress

Little sister guarded the shoes until Emma got up from nap.
Our Cancer Can Be Project is coming along nicely, we have five of the twelve months completely ready to go. Each weekend Emma and I try to knock out two photoshoots but the ER visits set us back a little. We received a huge donation of shoes from our favorite brand Livie & Luca this week! Here is a link to a video of Emma opening up the shoes, she is a very happy girl! Emma's Video Clip We were so surprised at their generosity. I contacted several of our favorite clothing brands telling them about the project and asking if they would like to participate in some way but leaving the options for participation open ended to let them chose. Most went unanswered, some danced around the issue but never actually said no even though they meant no and the rest gave us the "we will check and get back to you" but we never heard from them again. Livie & Luca responded and then did something we never expected, they sent us a huge box of shoes! We are overwhelmed at their
All profits from this dress helps childhood cancer families!
kindness and will be forever devoted to that brand! Also, Emma is wearing the Persnickety Princess Millie dress for the month of September. Back when we first were diagnosed with cancer they lovingly sent her a sample months before the dress release to wear for her before chemo pictures. It was only fitting that we use it for Childhood Cancer Awareness month in the calendar. Thanks again to Persnickety Clothing Company for giving Emma that amazing dress.

Now that we have the shoes there are only a few more loose ends to tie up to be able to do all the months. I was envisioning a tea party as one of the shoots with some of our fellow cancer warriors but I cannot seem to find a whimsical looking kid's table and chairs. I have seen a few but our donation funds for the project costs are running low so I need to be prudent. If anyone finds one please let me know!

A few of you have been asking when you can buy a calendar or how to buy one. I am working on that, it is more complicated then I first thought. I do not want any of the funds from the project to get mixed up with our own accounts since this is not a for profit project but a pay it forward venture. I have yet to figure out a payment method you all can use that I can put in a completely different account just for this and then use it to pay the printer and shipper. If anyone has done this before and you can help please contact me. So for now you cannot buy a calendar but hopefully soon!

Emma has been much better this week but she also has only been given one of her two chemo drugs. Every couple weeks they give her body a "break" and give her only one chemo drug for two weeks straight. The difference was huge. She had energy, she ate, she drank, she played. It makes me happy to she Emma acting herself again but it also put into perspective how hard both drugs have been on her body. I am not looking forward to going bath to both next week. For now I will enjoy one more week of happy Emma and hope she does better when she goes back on both.

Sunday, September 14, 2014

Hold On to Happy

When I was very young, about Emma's age, my grandfather was a Lutheran minister who ran our family mortuary. It may sound morbid to some but I spent many hours playing in the halls of the funeral home, watching my grandfather hold services and playing in the office with my grandmother. I remember clearly walking down the dark wooden hallway hearing the echo of my grandfather's tenor voice and the softness of his hands on the piano, "O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made; I see the stars, I hear the rolling thunder, Thy power throughout the universe displayed. Then sings my soul, My Saviour God, to Thee, How great Thou art, How great Thou art." I close my eyes and still hear his voice, see him sitting at the piano singing to an empty chapel.

I never felt scared being around death as a child, in fact, I remember feeling comforted knowing these people were loved on earth and were now home with God. A mortuary is not depressing but an pediatric oncology department...that is depressing. It occurred to me in church this morning as we sang the old hymn How Great Thou Art and my grandfather's memory filled my head with sweetness that Emma
will remember these days. I am not sure if that is good or bad. At least when she is an adult she will have a great perspective not many share that there should be no sweat in the small things. That we should live each day as if it was our last, to take joy in what we can as it happens. I hope she remembers days like today, playing at the park with her family. I hope she remembers the kind nurses who giver her pink ponies for being brave, the church friends who bring us meals, dear friends who come to play, singing with Grandma, Auntie who arrives for a weekend visit just because she loves us, and mommy stopping to treat us to chocolate milk because it just felt right. I hope she forgets all the bad and only remembers the good.

This post is for you dear Emma, remember the good things we do together. Remember the fun times. It wasn't all dark, we had good days. Hold on to the happy times.

And sometimes we smash whip cream pies in our face for childhood cancer awareness! Our Whip Challenge

Thursday, September 11, 2014

Off House Arrest

When people see me out in public and say, "You have your hand's full" my knee jerk reaction is to reply back, "You don't even know the half of it!". Funny how people perceive others. "But she doesn't look sick". The thing is, appearances are deceiving, are they not? Emma does look sick if you know her well. The color of her skin has changed and she has dark circles under her eyes. If you see her next to her healthy twin sister you can tell she is sick. Appearances are deceiving. Lucky for us Emma still has her hair, please God let her keep her hair.

Emma's numbers are back up this week so we are off house arrest! Her thrush is clearing up thanks to
week 5
our doTERRA OnGuard oils. You should have seen the look on the Oncologists face when I told him essential oils, not Nystatin was responsible for her healing. It was classic! We just put a couple drops on her feet and a beadlet in her mouth twice a day and a week later it is almost gone!

Emma and baby sister Cora waiting for doc
We have the website up and running for Emma's info, on it you will find her Cancer Can Be Project ordering, the form to fill out to receive a free calender if you have a Childhood Cancer Warrior and sneak peek pictures of our project. Please pass the link along to anyone you know with a Warrior. It also has the link for becoming a sponsor, we are having all donations go directly to the printer and shipping company. I ordered cards today with ordering information on them, if you would like some to pass along or place in your business just contact me and I will get a bunch over to you! Here is the link,

Tuesday, September 9, 2014

So This Is What They Were Talking About...

It is not fair. I believe now that watching your child suffer might just be the worst thing in the entire world. Emma has now had two ER visits. Both for high fever and dehydration with other odd symptoms like having the runs and what appeared to be thrush. This visit ended the same as last time, with a doc shrugging his shoulders after several hours in the ER, "We just don't know but we know it is nothing too serious". Thanks. Not that they could do more, maybe it is a virus or a reaction to the chemo but the greater thanks, the thanks for nothing. Cancer ate Emma's life but then it became hungry for mine too. There is no way I could ever think about working again until Emma is much much better. Appointments, monitoring, last minute trips to the ER, phone consultations with oncology, paperwork (so much paperwork), dealing with bills...that is my life now. No time for anything else. Any extra time I find goes to the home, food prep, laundry, homeschooling, breaking up sibling arguments, bathing, cleaning and shopping for necessities. That is it. I know I am complaining, as I read this I am considering deleting it all and writing something less whiny. But it needs to be said and the world needs to know. It is not just the kid who suffers greatly, and she does suffer. The family suffers so much too. I can see it in pictures. I am not just tired anymore. It is an extreme fatigue that no nap or cup of coffee can ever touch. And it will not get better any time soon. So here we sit on house arrest from a compromised immune system. Where fun distractions disappear and I am left with my demons; cancer, bills, and my weakening emotional state. It is times like this I am glad I have a faith base because in this kind of darkness the only light powerful enough to shine is God's. There has to be a better way. Please, someone come up with a cure for my baby. The chemo is slowly killing us all.

Many of you have asked how Emma is doing, thank you for your kind words and inquiries. She is
okay. Any day we can be home and not in a hospital is a small victory. She is, however, acting like a kid on chemo. Tired, whiny, lethargic and sensitive to just about everything. Eating and drinking have become a battle. We have a daily battle keeping her hydrated. I have been searching for a drink that tastes good to her but she will only take a couple sips of anything I offer and ditch it. I have had to resort to bribery to get her to drink a glass of water. I did find that she will very rarely turn down yogurt so at least we have one food that is a win on a hard day.

We are making strides with the Cancer Can Be Project. Emma has a website now,, for ordering a calender, nominating a cancer kid to receive a free one and becoming a sponsor. I am narrowing down the printer options and looking into shipping this week. I should have preordering up soon. If anyone is interested in offsetting the costs of giving the calenders for free to cancer warriors I am having you all pay our printer and shipping dept directly. This is not a fundraiser for Emma, it is a Pay It Forward mission. The only benefits we receive are the distraction of picture taking and the satisfaction we brought smiles to other kids in our situation.

A huge thank you to Persnickety Clothing Company for giving Emma a Princess Millie dress to wear and Livie & Luca shoes for sending Emma so many wonderful shoes to wear for our project. We are proud to support these amazing companies! They have big hearts and have shown us much love.

Thursday, September 4, 2014

Nominate Your Cancer Warrior!

We have a form to complete to nominate your Childhood Cancer Warrior to receive a free Cancer Can Be Calender for the holidays. I need a general number for the printer so please submit your child as soon as you can. Form Please share this with anyone you know that may find some hope and inspiration from our little project. I will have a place to purchase the calenders soon, if anyone has any recommendations for hosting sites that I can link easily to the blog please contact me.

On a personal note Emma finished her first month of chemo. One month down and eleven more to
go. She was not feeling too well this week and we found one of the reasons today. She has thrush. It is not related to the chemo but it is a result of a compromised immune system.

Yesterday we were interviewed by Erin at the Modesto Bee for a story on Emma. It is our hope that the story helps to promote the Cancer Can Be Project and creates more awareness for Childhood Cancer. I know I have said it before but I will say it again and again until it changes, 3.8% is not a high enough of a percentage in the budget for all pediatric cancer research. It is unacceptable. Our kids are worth more then this teeny tiny budget. They deserve treatments that are less toxic. They deserve a childhood. Please please do not look away. I know they are sad, believe me, I know. Bald children, the sick, the dying babies. I know that you do not want to look but what if it was YOUR child? What if your baby was diagnosed with cancer? Would you find 3.8% acceptable? Would you want to pump her full of chemo and pray she sees adulthood? Please do not look away, fight for us so we can save others. Join us. I have been asked recently who to donate to if you felt so lead to help with Childhood Cancer research. I have done some research and I can safely say I promote St. Baldrick's Foundation.

Monday, September 1, 2014


This photo works on Facebook and Twitter as cover photos, the text will wrap.
It doesn't see color, race or background. It could care less if you are an innocent child or come from a poor family. It is in every city in every state in our whole country. Childhood Cancer is a problem. Every 4 minutes another parent has to hear the heart stopping phrase, "Your child has cancer". It is not fair. These kids deserve a childhood. They deserve research and funding. It is heartbreaking but a very small percentage of cancer research funding goes to pediatrics. To quote my friend Sandy who has her own Childhood Cancer Warrior, "Only 4% of NCI's tax-payer funded annual budget accounts for ALL of the childhood cancers. Pharmaceutical companies account for 60% of cancer drug development. Of that money zero dollars will be devoted towards developing medications for pediatric cancer. Zero. Why? Because there is no profit in pediatric cancer. THERE IS NO PROFIT IN PEDIATRIC CANCER. Now repeat that to yourself a few times and let the rage wash over you." I could not say it better myself. 

It is time for change. It is time to care about our children. It is time to give a childhood to these amazing warriors. It is time to stop pumping our kids full of poison because it is their only hope of survival to adulthood. Change, together we can create change. This month is Childhood Cancer Awareness month. Will you stand with us? Will you fight at our side? Will you go GOLD for Emma this month on social media to raise awareness? 

This month we go GOLD for Emma, for Brooklyn, for Jaxson, for Lilly for all our friends who fight the same horrible battle we do. This is for us and this is for you. We are in this together.