"I Got A Boo Boo On My Chest"

The road to recovery will be a long one but we are determined to get there one day. Someday,

someday, I will look back and say "we did it". Yesterday was just another step in the right direction.

We arrived early for the first MRI of the day. We are watching her tumor behind her eye to see what it did after the surgery, depending on how it responded it could be nicer or more aggressive chemotherapy. We were also checking for more tumors down her spine. Of course the MRI machine decided to sleep in so we waited for about two and a half hours. Thank God for Auntie Amber! She helped keep both Emma and Cora entertained for the wait. While she was in the test we traveled over to the OR to do Emma's check in paperwork so she could seamlessly travel from the MRI to the OR with out coming out of her anesthesia.

The surgery went well with out any complications. The doctor placed her port slightly lower then most doctors so her scar is lower and the tube has more room just in case she gets an infection in the tube and it needs to be replaced. As a mother I am glad that the port is lower so it does not rub on tank top straps, I was worried that she would complain about discomfort with rubbing and it has been over 100 degrees in our town this summer. Also I am glad that her scar is lower so it is easy to cover later if she does not want to explain to people. She did a great job. She came out of surgery much less tramatized then last time. I think it was a combination of it being her second surgery this summer so she knows what to expect, we talked a lot about it and had the chemo port doll for a week, and this was a less invasive surgery. So far she is doing well with her recovery. As I write this she is sitting on the couch watching a movie and applying her boo boo oils to herself. She is doing well but so far my

issue is keeping her perfectly healthy sisters away from her, she just wants to cuddle and be left alone but try telling that to your twin and younger sister! They keep pestering her, poor kid.

We were unable to start chemo yesterday because we do not have the second and third diagnosis opinons from Boston and UCSF yet. We are unwilling to begin treatment until we know exactly what we are dealing with, no matter what it is cancer but we want to know specifically what type. So far UC Irvine and Boston have very conflicting theories which does not sit well with us. Hopefully UCSF can provide some insight.

So that is where we stand, chemo port is in place and this week we will lay low and heal. Next week we will begin chemo and pray that is all goes better then we expect. Thank you for all your love and prayers over the last couple days. We greatly appreciate everything. All the lovely busy activities you gave to the girls, soft blankets, hats, robes, freezer meals...it is all amazing!! If I can just make one teeny PSA, we are now in a constant battle of infection. Yesterday our world completely changed. Please, please stay away from us if you are sick or even if you have been around someone who has been sick. Even if you are trying to help us with something, please do not bring any known germs. Also, loved ones who live near us: please do not touch Emma. She is very prone to infections now and any temperature over 101 we have been instructed to bring her straight back to oncology. We can't even go to the ER unless it is a breathing or heart issue because the risk of coming out with something worse is very high. Lastly, please do not touch the rest us with your hands. No shaking hands unless you sanitize right before (and we can see you do it). If you are healthy we fully welcome hugs! Ironically those are much more hygienic! I know it will be hard for all of us but we have to protect Emma. If any of you are wondering why we homeschool all the girls it might make more sense to you now. We will be trying to kindly remind each of you so if we with hold a hand shake or ask you not to touch Emma please do not be offended.

I have a fun project I am working on with Emma, a small hint is it involves pretty dresses and inspiring other childhood cancer girls. More details to come!!

God Heals The Broken Hearted

Emma rocking the Persnickety 2013 Princess Millie outfit

I have to admit, ever since Emma's biopsy came back as stage three cancer I have had "What Becomes of the Broken Hearted" stuck in my head. I know the song is about a romantic relationship but so much of it speaks to me right now. What does become of the broken hearted? Hope. All that is left is hope that God can put the pieces back together again. So for now a broken heart but hope for the future.

We went to see the Child Life Psychologist yesterday. I took all three girls by myself and oh boy, I took on more then I should! It was good for Gracie to come, she has never been to the hospital. I

think she is convinced that we leave her with friends and take Emma to Disneyland! She finally saw that our doctor visits are not a party and the four hour drive is far from fun.

It was a good visit. All three girls got to take a baby home, Emma's baby has a pretend Medi Port device and a doctor bag with pretend medicine for her to play with at home. Our hope is it helps her to understand somewhat the events to occur in the very near future. On Tuesday she goes in for her surgery to place the chemo port and she will get her first round of chemo. We have to plan to stay overnight for observation...that should be interesting with baby sister. I'm sure the night will consist of me staying awake upright on the couch while Cora sleeps in the carrier and Emma sleeps in the bed. Thankfully Auntie Amber is coming to help me!

Our church fundraiser is Sunday and although I have contacted a couple news teams I have not heard

back that it will be covered at all. If anyone has any connections in the local news can you please spread the word? I am getting a little concerned that wonderful people have put a lot of work into an event that not many will attend. Local Modesto friends we hope to see you there!!

Lastly, I made Emma a Facebook page in the hopes that it brings a connection to a trial or treatment. We found our amazing surgeon by our friend Becca reading our blog and connecting us. Maybe we are lucky enough to have it happen again! Please like her page and share it with your friends! From now on I will update there first because it is easy to do so from my phone and then update the blog later with more details when I have the time. On surgery day I will be posting a picture story again but on the Facebook page. Emma's Facebook

A Morale Boost

We are still waiting for a confirmation of Emma's diagnosis. It has been a very long wait! The longer we wait the harder it becomes. Hopefully we will hear something soon. While we wait we have a few things going on to give us a morale boost.

We have a new way to stay in touch, head over and "like" Emma's Facebook page! Through Emma's Eye

Wednesday Emma is meeting the Child Life Psychologist at the hospital. He will use play to help Emma understand the general idea of what is going on with her body and what will come. He is going to send her home with a "chemo baby" that has her own mediport device so Emma can take her home to play doctor. In our last surgery Emma did not fully understand what we were doing or why. She is still trying to process everything and will talk about it to almost anyone who will listen. "Doctor hurt eye. Boo boo. Eye all better now." That is the general story she tells. We are hoping that the chemo baby will help her to process more.

Friday is the last day to place your 31 Bags order with Jennifer to benefit Emma. She is donating her commission to Emma's medical expenses. If you are planning to order please do so! 31 Bags Event

Next Sunday our church is hosting a Benefit Dinner for Emma. It is at St. Peter's Lutheran Church on Sunday August 3rd. Dinner will be tacos! Doors open at 4:00 and dinner is at 5:00. Suggested donation of $10 per person. There will be a Silent Auction with amazing themed baskets such as "movie night" and "wine and cheese". Our church members can make a basket to enter, please contact Janet Ente or Judi Mello at our church for information. We saw a cute sign up sheet in church today and I know many more people then just those few want to come, please help to spread the word! I made an image below that you can share on your email lists and Facebook pages. Let's try to run out of seats!  http://www.stpetermodesto.org. 

"Crunchy" Natural Mom Confessions

I chose chemotherapy.

 If you know me at all you know that I am a very naturally minded person. We eat organic and local. We grow our own veggies. We research every individual vaccine. We try herbs and oils before calling a doctor. We clean with our homemade cleaners. We buy used not new when possible.

Emma wearing a cloth diaper & wool cover

My husband knew when he married me that I would push my "hippie" ideals on our home and over time I have seen him enjoy a more natural way of life.

That's why it hurts so very badly to put my child in chemotherapy. I cry about it several times a day. My organic fed, no processed foods, no refined sugars, no food dyes kid is going to have chemicals pushed into her body for the first time. If it wasn't do or die time I'd never, ever consider it.

This choice is an open wound, I am having a very hard time dealing with it mentally. I am actually going into counseling over it. I am writing this post because several people have asked us since her diagnosis if we have considered alternatives. The answer is yes, we have. We have researched endlessly since December, fought doctors who wanted to start drugs months ago and hired a team to look for something, anything that will help Emma from gene therapy to stem cell research.

So I formally ask all our loving friends and families that unless you have a specific treatment that is actually possible that will help Emma with her specific type of cancer that you just support us. We understand the dangers of chemo but right now the alternative is death. We are fighting, the best we know how with the best medical team we can find. Fighting, literally, for our lives.

So here is my confession, I chose to fight. I chose to believe that science has advanced to the point where we can save my baby. And what we need from all of you is love and support. And maybe some cookies.

Visiting our CSA farm

The Journey Begins, Join Us

Happy photos because I will fight to keep my child's life as normal as possible! Here is our little warrior having fun!

Picking out her favorites in the Persnickety catalog

Breaking the rules with her sister.

The Fair

We have a lot going on, here is a list of events where you can get involved!

1. 31 Bags Donation Party - my sweet friend Jennifer is throwing Emma an online and in person party and donating her commission to a Emma's medical expenses. You can order through Jennifer now through August 1st. 31 Bags Event

2. LA Car Wash - my fathers personal trainer, Kevin, who owns Fitness Factor in Arcadia; our sister Margaret, her fiancé Joaquin and a bunch of their friends are doing a car wash.
Saturday July 26 from 9 to 2
24 N First Avenue Arcadia, Fitness Factor Gym
http://www.fitnessfactorarcadia.com
Donations and checks at that event please make payable to Tom Heidenberg, our father, who will gather everything and give us one check to pay off some of her bills.

3.UDATED INFORMATION St. Peter's Lutheran Benefit Dinner - our church is organizing a benefit dinner for Emma on Sunday August 3rd. Dinner will be tacos! Doors open at 4:00 and dinner is at 5:00. Suggested donation of $10 per person. There will be a Silent Auction with amazing themed baskets such as "movie night" and "wine and cheese". Our church members can make a basket to enter, please contact Janet Ente or Judi Mello at our church for information. The event is open to everyone, please come!  http://www.stpetermodesto.org

4. Go Fund Me - Emma's gofundme is still going! Emma's gofundme

We still have no word on our second and third opinions on her diagnosis. I will update the blog when we know. Once we determine her type of tumor she will begin oral chemo drugs and she goes in for her MRI and chemo port surgery on August 5th.

A HUGE thank you to Moms Club of Turlock for giving us gift cards for food on days we get stuck at the hospital and St. Peter's Lutheran Church's lovely ladies for making us freezer meals for the days we are too tired or busy to worry about dinner. We are so grateful for your help and support! God bless you all!

My next hurdle is to find someone to watch Gracie on a regular basis when we go in for chemo treatments or someone willing to go with us. There are playrooms and playgrounds at the hospital. Up until now we have been blessed with amazing friends to watch Gracie while I go with Emma to the hospital but we are expecting weekly chemo visits which take all day when you include four hours of driving round trip. If anyone knows of a reliable babysitter / nanny please contact me.

Emma and the family have her before chemotherapy photo shoot tonight with Emily where she will proudly wear Persnickety's Princess Millie Dress. These photos mark the beginning of our road to recovery!

follow His light in the darkness

Thank you to all the loved ones pouring out your support. Its hard for me to think that everything will get much worse before it gets better, your continued love and kindness keeps us going. The irony in finding out devastating news such as your child has cancer is, it should kill you. You feel like you are

dying of a broken heart but the cruel irony is you don't die. You continue living knowing what you know, facing the battle ahead. That saying, "what doesn't kill you makes you stronger." I hate it. We have adopted the color yellow, the color for childhood cancer, and the motto "I fight like a girl." We will be strong, not because we are stronger then anyone else but because it is the only choice we have.

Each of us have our own way of dealing with pain. Mine is writing out my feelings. Sometimes dark, often unorthodox but very healing. Most of my blog posts I write go unpublished. I worry that they are a little too real to be sent out into the world. So I store them and sometimes I hit delete. But this one I wanted to share. Why? Because no child should get cancer, no mother should have to endure watching her child fight cancer, and I will not pretend that I'm fine. It is by Gods strength alone that I'm still here fighting. His word keeps me going, His arm holds me up. In this darkness I see His light. Many of you have told me that somehow this is a part of His plan. How sad. I hope not. I hope

that God cries with me. I believe He will turn our situation into a blessing for others, that He will somehow use us for the greater good. But I have to believe that His plan was not to give my baby cancer. I might be wrong, and that is okay. It's what I need to believe right now. 

Emma's tissue and test results are being examined by another set of eyes to confirm her diagnosis and search for any other abnormalities. The results of the tests will help determine her treatment. We went to Children's hospital today to meet with her team. It was a very frightening experience. If our diagnosis is correct (please God, I hope not) then her Genetics specialist said Emma has a 30% chance of living more then five years. Her oncologist was more optimistic and said to take it one day at a time. Emma is a fighter so we fight with her. She is going in next week for another MRI, this one of her brain and spine to see if more tumors are hiding in her spine then after that she will have surgery to place her chemo port. 

I am working on a before chemotherapy photo shoot for her to celebrate her journey into recovery. She will be wearing a Persnickity outfit to help promote their Millie's Princess Foundation which creates awareness and hope for those facing childhood cancer. The Persnickety clothing company truly went out if their way to make this happen. The dress is not in production until September but I wrote to them telling them about Emma and they found her a sample dress in her size and sent it to her as a gift! I am overwhelmed at their kindness and proud to promote the a Princess Millie 2014 dress. If you have a little girl please consider buying one to support their cause or you can donate to the Millie's Princess Foundation here, http://www.milliesprincessfoundation.org

When we discovered Emma had cancer I applied to Make a Wish to hopefully have something fun and positive for her to do in all these doctor appointments and surgeries. They contacted us on Thursday and we are now confirming her diagnosis with her doctors to determine if she will get to make a wish!  As depressing as it is to accept that my child is eligible I am glad that organizations like this one exists. We need to do something fun.

Please feel free to save and share that picture of super Emma and please continue to pray for us. 

The C-word

Each generation has an epic event where they will always remember where they were or what they were doing when it happened. Our parents had JFK, we had September 11th. Events that are burned into our minds. Today will forever be burned into my memory, today is the day we found out Emma has cancer.

No one expected it but me. I had one of those nagging mothers intuitions telling me something was

horrifically wrong with my child. Less then a 10% chance meant nothing to me. Somehow I just knew she would be in that small percentage. She was diagnosed with a grade 3 brain tumor.

We have appointments at Children's on Friday to discuss chemotherapy treatment options. I'll have more information after that appointment but for now here is the answers to the questions I know you all have,

- How are you doing?
Not good. We are broken hearted and pissed off at the card we were dealt. We are depressed in every sense of the word. We are leaning hard on God's promise to shelter us from the storm. I know people mean well when they ask this question but most don't want the real answer. So there it is, we are not doing well but functioning.

- Is it malignant / life threatening?
Yes and no, it depends who you talk to. She will make it through, I'm sure of that. It has not metastasized so that makes her prognosis better.

- Can I help?
Yes, please pray for us. Leave us room for grumpy days and short tempers or not getting things done on time.  Help us with support groups or medical referrals. And the biggest help is please don't ask the hard questions or tell us stories of children you know that died from brain tumors / cancer. We still have the Go Fund Me account set up, Emma's Go Fund Me and we could really use help with things like dinners on appointment days and gas cards to get to appointments. It looks like she will have weekly appointments at children's (90 minute drive) once a week. In our van that's a small fortune in gas!