Wednesday, December 31, 2014

2015, Hope.

I am not sorry to say goodbye to 2014, in fact, if it was a person I would call him a jerk. In 2014 I watched my baby have four MRIs, each time being put under and stopping my heart with panic. In that year I held her hand before surgery, rocked her with stitches, and drove her all over the state for specialists and follow ups. I cried more tears then ever before in my life when we were told she had an aggressive cancer. We all fought depression, we all were left desperately clinging to God's promise to provide, and we all had far too many time outs to collect our emotions.

There was good to counteract the bad, the amazing church fundraiser, the car wash, and all the other little fundraisers we did online to help with medical bills and expenses. People we know and more surprisingly people we had never met offered to help with time, talents, and funds. We were approved for Make a Wish. We saw promising MRI results. We were home for Christmas.

I am very much ready to put 2014 behind us and move on to a new year. A year that we will start with family surrounding us and a trip to Disneyland. A year that will have Hawaii and birthdays. A year that I hope we will beat cancer's tushy and send it packing.

I have so much hope moving forward so I would like to name 2015 the year of HOPE. Let's all take a moment to pray that hope is what we seek and hope is what we find.

Good night 2014, hello 2015.

Wednesday, December 24, 2014

And That Makes a Year

Emma & Daddy last year
A year ago today I sat in a waiting room praying for my baby who was in an MRI. We didn't know what was going to happen, I only knew that her eye doctor saw something behind her eye at her appointment and whatever was responsible was pushing her eye out. I prayed not knowing what to pray for, do I pray that it is a cyst? Do I pray that it is removable surgically? Do I pray it is not cancer? Instead I prayed that God would give us strength to handle whatever it is and how ever long it takes. A year later that is still my prayer.

No one wants to be told your child has a brain tumor, no one wants to be told she actually has a total of six brain tumors and no one wants to hear the words "inoperable" but that is exactly how we spent Christmas Eve last year. The next day, Christmas day, Brad and I spoke in hushed tones about Emma trying not to project too much into the future.

A year later we have seen three more MRIs, several tests, a surgery, glasses and weekly chemotherapy. Our lives are dramatically different now. In many ways I feel stronger and in several ways I feel beat to hell.

2013 Christmas picture

Although this Christmas we were still in the hospital days before I count us blessed in many ways.
This year we have a name to fight. We know what she has, we know the survival rates, we know the drug protocol. There is freedom in knowing. If anyone reads this who is still in the testing phase and you are afraid to know the diagnosis remember me saying this, there is freedom in knowing. Not knowing causes those panics in the middle of the night, the "what if" panics. Your mind can wander to even worse conclusions then reality. It is always better to give your monster a name.

This year we were also blessed with help. Amazing people and organizations have sent Emma things to cheer her up this Christmas and help for the family. We have Disneyland to look forward to and Hawaii through the Make a Wish foundation in a month. Those things keep us going and looking forward to happier times while we sit in the Oncology department getting meds.

Yes, often, I wish this was not my life. That it was all a horrible nightmare and I will wake up on Christmas last year with three healthy children. That I will tell Brad this horrible dream over coffee and he will reassure me that it never happened. Not to us. But I know that is not true, this is our life. This is what we fight. Everyone has monsters, some are big, some are small, some are
Our family this year
invisible to everyone but he who fights him and some monsters win. Our monster is Cancer and we will fight and we will not give up.

I know this is not a very jolly post for Christmas Eve, it is a much more sober Hallelujah. A Hallelujah that we are still here fighting and we have happy times ahead in the very near future. "And Love is not a victory march. It's a cold and it's a broken Hallelujah." Jeff Buckley

Wednesday, December 17, 2014

Whispers and Gossip, We Are "That" Family

You can't hear the conversation but you know they are talking about you.

"That's the one with cancer, poor baby."

Yes, that's us. "That" family.

My friend shared a blog post with me recently where a woman talked about her experience with others talking about her rather then to her in regards to her breast cancer. So much of it hit home with me. It is hard to be the person others talk about. Most of the time they mean well, the statements are of concern for our well being, asking for updates but not wanting to bother us or trying to find a way to help. Sometimes is is downright mean and hurtful gossip. We luckily, have had more of the first then the second.

Margaret Feinberg said this in her blog that really helped me, "So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift. And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that."

So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift.

And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that.
- See more at:

So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift.

And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that.
- See more at:

So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift.

And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that.
- See more at:

I was having a nice conversation with a very dear friend the other day. Our children were all taking a nap and we were enjoying talking about something other then pee pee in the potty and Elmo. This was one of the things we discussed. I have always been the one to take care of others. I am the one who brings meals or groceries, cleans other people's homes, donates, etc. Not because I am better than anyone else but because I feel lead to help. I am that person that insists it is okay to let me come over to help if your house is a mess but I clean before you come over. I will never expect you to feed me while I am there but I will force feed you home baked scones when you come to my house.

Last year the tables turned. We were the family that needed help. With watching Gracie for appointments, with meals, with finances, with prayer, and with functioning day to day having cancer. When the tables turned I found how hard it is to be on the other side and accept help. It feels depressing being the "charity" case. Being the family others rally to help.  It is not a happy position to be in temporarily but for a year it is a hard thing to accept.

This year I have learned to accept help and I have learned to let people see my life when it is messy. I have learned how to be specific when people ask how they can help. I have learned that the people that whisper about you behind your back 90% of the time mean well and what they say is none of my business. I have also learned that 10% of the time what is said is false and very hurtful but also none of my business.

I have learned that we cannot please everyone, we seem to be too holistic for some and too mainstream medicine for others making everyone mad but that is okay. It is okay because Emma is OUR child and we are the ones prayerfully considering her care with her team of medical professionals. I have learned that we will never be poor enough for most financial help but we will never be rich enough to pay all of Emma's bills on our own.

I have learned that although Emma is immune compromised she is a child who needs to run and play and interact with her peers. I cannot protect her from everything but I can arm her as best I can. Most of all I have learned how powerful I am, what great depths of grief I can sustain for so long and still function. The amazing, awesome, wonderful power of God that keeps me getting out of bed each day with a smile for Emma. This coming year I hope to learn how to slow down, stop with the busy, rushing around. I want to let myself be happy. If we come out of this I do not want these years lost to sadness and grief, I would like to see that we were still joyful in this time.

The blog post I mentioned is by an amazing author who I find very inspiring, here is her Facebook. This picture pretty much sums up her amazing outlook on life. She found joy in cancer and I hope to as well. Margaret Feinberg

Monday, December 15, 2014

It's Beginning to Look A Lot Like Christmas

When I picture the holidays I see Christmas cookies, and decorations, a brightly lite tree, stockings hanging waiting for Santa to arrive and family. When we cancelled the LA trip because of the weather we lost our Christmas with the family, although we will be there for New Years somehow it doesn't feel the same. I am happy and grateful that Brad and I have our own little family and our own little traditions to embrace. I filled our weekend with Christmas cheer and we have continued it into this week. We
decorated a gingerbread house, made shortbread cookies, practiced for the church Christmas pageant, went for a Santa visit and created some new ornaments for the tree.

This break from Emma's chemo treatments has been good timing. The weather became very stormy and our four hour round trip drive to the hospital may not have been possible! The Central Valley is not structured for heavy rain...or rain at all! If we get an inch of rain everything floods. I get nervous driving around here in the rain because drivers here do not know how to navigate in water. We lived for a long time in a place that got regular rain so I am used to it, these drivers are not! I cannot tell you how many cars I have witnessed sliding along the freeway out of control or stalled. Our next chemo visit next Monday so until then we are playing around and getting ready for Christmas day.

I have more holiday fun up my sleeve for this week but tomorrow we will take a break from it to mail out our Cancer Can Be calendars which we picked up today! I am so happy that we can share this project with our Cancer Warriors at Children's! If you have a childhood cancer fighter it is not too late to send him or her a calendar. In fact, we will send them out until January 31st. You can contact us through the blog, her Facebook or our email.

Monday, December 8, 2014

But We Wear A Smile

I teased my husband yesterday that the city slogan for Modesto should be changed from "Water, Wealth, Contentment, Health." to "Modesto - You Are Here Because You Have To Be." All joking aside the Central Valley has a few things going for it, the culture is very Christian and loving, big cities are driving distance, and the weather is mild. Until this week. The perfect, predictable weather of the Central Valley and LA area is about to get crazy. Weather forecasters have predicted moderate weather for Monday - Wednesday, possible rain on Thursday but on Friday they urge you to build and ark and gather two of every animal. Flash back several months to our friends at ABC News asking us if they could send us to Disneyland this holiday season. We found a small two week pocket of time where Emma would be allowed to travel before the tickets expire. I turned to Brad and said, "Are we tempting fate trying to go to Disney in December?" We both laughed and said, "No, it is LA!". Flash forward again, RAIN, big rain. On the day we plan to go to Disneyland. Sigh...there is nothing we can do to change the weather besides a funky rain dance to try to bring it on early so we are packing rain coats and umbrellas. We are just going to go and try to last as long as possible.

This week Emma did not have chemo but she did have to go to the hospital for a check in. Her numbers were good and she was cleared to travel for Disneyland. We were also told that during RSV season Cora (her younger sister) will not be allowed in the clinic. RSV season lasts about 2-3 months and Cora is a very clingy breastfeeding baby. She is the type of child to scream if I leave her and make herself throw up. Even if I found someone to watch her near the clinic I would still need to leave Emma to go nurse Cora and when I leave I have to have a legal guardian with permission to treat with Emma. This was a huge problem. I called a meeting with the manager of the clinic and our social worker to try to figure out a solution. The manager was trying to brainstorm for me and asked, "Don't you have any family members who do not have young children who can come help you on chemo days?" I broke down
crying. It was not her fault, it was my lack of family. It touched a nerve. "No, just me. Sometimes my husband but he is out of sick and vacation days." I could see the pity in her face. I knew she felt bad, she was just the messenger.

When you look around a chemo clinic you will see a child with a pair of adults typically. Usually a grandparent, sometimes a second parent or an aunt / uncle. Rarely do parents go alone with their child and even more rare is what I do, I go with two children each week. It is not the path I chose but it is my reality, I make do each week trying to just take care of one day at a time. This RSV thing threw a wrench in my system. After a long talk and some tears I left to talk to my husband at his work. His boss was very loving and totally understood our dilemma. She is allowing Brad to leave for a half day once a week to help with Emma's chemo but those hours need to be made up elsewhere which means even longer days for Daddy. Most days he is gone before breakfast and home after the girls have had dinner. I hate to think how much longer his day will become.

I am sharing this with everyone because chemo moms wear a smile. I had a friend say recently, "But you always seem so upbeat and positive!" When you see us we are distracting our children with bubbles and songs. We carry everything on us to make it easy to give medications, do temperature checks, and paperwork for emergency trips to the ER. But we are human, we hurt, we put the kids to bed and throw tantrums in an empty room yelling to God, "WHY?". Most days I feel on the verge of a nervous breakdown. Cancer broke my heart and God is slowly putting the pieces back together. Being a chemo parent is so much harder then the other roles I have played as a NICU parent, twin mom, and mother of three kids under two years old. This sucks. I feel so alone most days, even when surrounded by church and friends. Being a chemo mom is lonely. For at least the next couple months I will not wear the chemo day burden by myself and I will have my husband at my side.

Tuesday, December 2, 2014

Pick Up Your Cross

When CCS (an organization that pays medical bills your insurance does not cover) asks for proof of a
Just Emma's NICU papers
preexisting condition this gal gets a date with a file box full of paperwork. The amount of medical paperwork on this child is astounding. She spent the first four months of her life in the NICU fighting prematurity and feeding issues among many others.

Emma and I in the NICU
Yesterday as I am sorting through the paperwork searching for the information requested I was reflecting on Emma's journey and my journey as I fight for her life at every step of the way. There are medical terms I know and test results I can read that most people cannot. I can glance at an MRI result and know with out pathology readings if we have good news or bad. I know where to research for alternatives, trials and second opinions. Back in high school and the beginnings of college when I studied sports medicine and pre-med I never thought I would use that knowledge so much after I changed my major. God doesn't make mistakes, He knew I would need that knowledge.

Jesus says to pick up your cross and follow Him, we all have our crosses to carry. Some people carry mental illness or broken hearts. Emma picks up her cancer and then I pick up Emma. I got you baby, let's follow Him to the next adventure.

Thursday, November 27, 2014

Grateful Hearts

Last year we spent Thanksgiving alone worrying about Emma's upcoming MRI and what it would reveal. It was a dark holiday and honestly we did not have much to celebrate, times were tough. This year although we added cancer, surgeries, chemo treatments, and giant medical bills we have so much to be thankful for. I wanted to take a minute to be grateful.

For friends that bring light in dark times and help with out asking,
For coffee that helps Mommy with multitasking.
For Gracie playdates on chemo days and help with the kids during church,
For Brad's supportive boss and co-workers.
For a church family to share a Thanksgiving meal and provide prayer,
For essential oils and hairdressers that make it easier to lose hair.
For our nurses, doctors and supportive staff,
For the psychologists and child life specialists who make us laugh.
For surprise mail from friends to make life sweet,
For charities that help us pay bills and make ends meet.
For Make a Wish sending our family to Hawaii for some fun,
For advice from fellow chemo Moms.
There is much to be thankful for this year so thank you to everyone far and near!

Emma update: She got her glasses this week and loves them! I thought it would be a battle to keep them on her but I think that letting her pick them herself helped a lot. She treats them like another fashion accessory. Next week we do not have chemo but we do have a mandatory check in for blood work and stats. The following week she has off from hospitals all together and we get to go to Disneyland!

Friday, November 21, 2014

Learning To Surf

Just when we thought we kicked the virus bug floating around our house it went back for round two! We ran more tests on her yesterday but everything came back clean so we know it is something minor and viral. Today she has more color and energy so I think we are on the upward trend. We were bumped up to Wednesday next week for chemo so we can spend the holidays with our church family and she only has to get one of the chemo drugs which should make for an easier week. After next week she gets two weeks off and a trip to Disneyland!

Emma's glasses are on order but I did my own footwork and found her a backup pair that may be better then the pair we ordered. Hopefully we get this girl in frames soon so she can see better and have less eye strain and headaches.

This week I have been doing a lot of reflecting. My 30th birthday is in a few days and when I was 18 I made a list of everything I wanted to do before 30. Some were serious and some were silly, I accomplished most. Things like get married, have children, live on my own for a couple years, and get college degrees are all checked off. I never made it to Europe, bought a house, or met Collin Firth but those were far fetched! I thought about what I want next, what do I need, what should I do? Then I realized something, cancer changed me deeply. The things I want now are so big or impossible that I may never reach them fully. Things like killing my kid's cancer and removing NF1 from her all
together, making my student loans disappear, and having a magical refrigerator that never runs low on food may never be in my cards. So what do I want for this next phase of my life that is possible? More peace and less stress, more hope and less depression, more family fun time and less hospital time but most of all, more birthdays with my Emma. As an 18 year old I never imagined that I would see so much joy before 30; marrying the love of my life, the birth of three beautiful daughters, the establishment of a highly sought after career but then so much pain with cancer, the death of our child River, and letting go of my career. Life comes at you in waves, you cannot stop the waves but you can learn to surf. Before 40 I wish to learn how to surf.

Monday, November 17, 2014

You Can Run But You Can't Hide!

Smelling flowers before chemo
All the probiotics and essential oils in the world cannot completely save you from cold and flu season when you are as tired as this family. Our little home was hit hard this week. It started with Mommy...that feeling that this might not be allergies then two hours later that feeling snowballs to you sitting on the couch looking like warm death. I was shuffling around the house in my jammies carrying a box of tissues in one hand and my homeopathic remedies in the other when I heard a big sneeze come out of a little kid, I turn around to find Emma staring back at me. It got worse from there. All day Friday I stayed home sick as a dog while two healthy kids ran circles around me and one sick kid whimpered next to me. I finished cooking dinner and told the girls to go to the table, "Mommy I don't feel good I lay down on the couch." Oh no, big red flag. When Emma doesn't want to eat be afraid. I took her temperature and she was reading in the 104-105 degree range. In a panic I called the hospital then Daddy to warn him there might be an ambulance in our driveway when he arrives, packed up the kids, and when Daddy came home we rushed to the ER.
Unhappy sick girl in the ER
Six hours and several tests later for RSV, Flu, and Septis we were told the high fever was from her viral infection and to go home. We rolled home at 1am still sick and very tired. The next morning her little sister started throwing up and continued redecorating herself, me and our home with vomit at least every hour for the day. We are thankful that Emma did not have anything worse and that she and her sister are feeling better now. Emma is already back to her perky little self. After a weekend like that are are hoping and praying for good health and a bunch of uneventful and quiet holidays.

Today Emma's glasses arrived so we went to try them on for a fitting. They ended up being a
One of Emma's holiday pictures
comedy of errors. Although Daddy and I both wear glasses this is our first child in glasses and we were unprepared for the amount of research required to get a good fit. I was also unprepared for two different optometry offices who claimed to fit kids being totally clueless! The pair that arrived today for her were too small, had traditional metal hinges when they were supposed to be silicone, and felt cheaply made. We were not happy with them so I sent them back and ordered a different pair. I have a sinking feeling this will be a sharp learning curve for Mommy.

If you didn't catch it before Emma was in the news again last week! Check out the link below for her article in the Modesto Bee! Emma's Update

Wednesday, November 12, 2014

Busy, Busy

In a week where we are still recovering from daily doctor appointments I am looking to all our recent blessings. The good MRI results, an upcoming Disneyland trip thanks to our friends at ABC News, Christmas and our Hawaii trip. There is certainly a lot to be thankful for these days. Happy times ahead make the day to day struggle a little easier. I am realizing, however, that I might need some regular help around here. Each week I seem to have at least one errand that an immune compromised Emma cannot go along which is always a Monday-Friday, 9am-5pm kinda deal. I also find myself drained not just physically from all the running around but spiritually and emotionally as well with no reprieve. I am putting it out to all of you that if you or someone you know can commit to babysitting one day a week during the day for just a couple hours that would be amazing. This person would need to have no young children of their own to bring along, be in good health and cancel if she feels even a hint of an illness coming on. In my head I have an idyllic picture of adopting a Grandma! Email us at if you have a lead please.

This week Emma was in the Modesto Bee again thanks to the lovely Erin! It was a well written update on Emma. Article

The Cancer Can Be calendars are available and with your donation toward our expenses in giving them away you receive one for yourself! Please keep in mind that if you would like to receive it before Christmas you will need to order before December 15th. Head over to Emma's site for information on how to obtain one! Emma's page

Saturday, November 8, 2014

Our Little Four Eyes

A year ago we thought Emma had a lazy eye and took her for an eye exam. We walked out with a referral for an MRI. That began a year long journey of tests, surgeries, and tears. It was a hard year. No parent walks into an eye exam thinking the doctor will tell you he sees a tumor through your child's eye. It took nearly that entire year to get some good news, that Emma's six brain tumors are retreating thanks to her chemotherapy. I saw the MRI images last Thursday and it is amazing to see the difference. The tumors are less dense and smaller. Hopefully Emma continues on this path and those tumors die.

So a year later after our journey began at an eye exam it went full circle and ended at an eye exam. Emma is blind in one eye but she has always had decent
eyesight out of her seeing eye. Recently she became obsessed with lights and would rub her eye at the end of the day telling us that it hurt. I was concerned that her only seeing eye was straining so we took her back in for an exam. As we thought she is far sighted, most children are at this age, but hers is enough to consider glasses. She also has astigmatism just like I do. Poor girl, I now know why she is obsessed with lights! To us lights turn into fuzzy balls and make it difficult to pick out any one thing. So we fitted Emma for glasses. Of course this little fashionista had a blast trying on all the glasses but she was quite upset that we have to wait for her special pair to arrive! They are very Emma, and not the
ones pictured but this gives you an idea of the direction she went with the look. We will reveal her glasses in a fun photo shoot when they arrive.

We also have good news about the Cancer Can Be Calendars, you can now get one of your very own! Please visit our site for more information, We are not able to sell online at this time, there was a lot of discussion with financial advisers on how to handle this pay it forward with out being a nonprofit and this was the only way we could do it. We decided that people who donate to the costs of printing and shipping the calendars to children with cancer will receive one of their own. The donation minimum is $20 which covers the costs of a calendar to a child and a calendar to the person who donated. If the person donating would like more than one calendar then they are $10 each after the $20 (for example. $30 will be two calendars and $40 will be three calendars). Please follow the steps below receive a calendar from Emma.

 - Mail cash or a check to our PO Box, please make sure to copy the address exactly how it appears below.
Emma Heidenberg
c/o Brad Heidenberg
PO Box 576283
Modesto, CA 95357

- Please make checks payable to Emma Heidenberg and write Cancer Can Be in the memo line.

- If your donation is over $20 please specify how many calendars you would like to receive, if no note is seen we will direct the extra funds into printing more calendars for children. 

- If any funds are left after January we will put it into the next pay it forward project which is children's books on chemo and cancer or we will donate it to St. Baldwicks.

Sunday, November 2, 2014

Our Heroes

Heroes come in all sizes but to Cancer moms most of us would say that a true hero's heart lives in a child fighting a huge battle. Emma is my hero. She goes through life smiling. At chemo treatments she is smiling, at MRI appointments she is smiling, at numerous other appointments she is smiling. She charms every single nurse. I really think this girl has a fan club! We walk through the door of the oncology department and the whole staff lights up, they all just love Emma. There is something about this child. She was born too early, a micropreemie, she spent her first four months of her life fighting for life in the NICU. I remember watching her sleep in the NICU room thinking to myself, if she can survive this she can do anything. Time after time she proves me right. This little girl can do anything, even fight cancer.
Our three little Heroes!

This Halloween we were superheroes. The girls wore homemade costumes that were a joint effort by my wonderful Mother in Law and myself. It was planned for months but it became very appropriate when just a couple days before the holiday we learned that Emma's tumors are retreating.

Part of the theme was to take a moment to thank all of our heroes. The people and organizations that helped us in so many ways. From prayer to dinners to fundraisers to trips to Hawaii these are the people who keep us going and make it possible to fight. In no particular order we thank these heroes: St. Peter's Lutheran family, Emmaus Lutheran Church, Fitness Factor, Tracey, Katie,The Cartright Family, Bethany, Auntie Amber, Andrea, Leia, Lilly Bumpus, Sandy, The Darpinian Family, Leslie from Matilda Jane, Make a Wish, Mom's Club of Turlock ladies, everyone who donated to our Go Fund Me, Elves and Angels Family, DS March Mama's group, Persnickety Clothing Company, Livie & Luca shoes, the Well Dressed Wolf mamas who let us borrow clothes, Juliana, Rachelle, Arielle, our team at Children's Hospital Madera with a special shout out to Kim, Dr. Tao with the team at UC Irvine, and our loving family too who rescue us daily!
Emma playing at our Monster Mash

We swoon to you and say proudly, "Our Hero!"

Tuesday, October 28, 2014

Rainbows Ahead!

It was 3:45am when our alarm went off but it didn't matter because I was already wake. Weary from one nightmare filled night after another I was just waking from yet another dream I care not to finish. We packed up the girls in the van hours before the sun would wake to travel down to Children's Hospital for an MRI. It was our 5th MRI but easily the most important. This test would tell us if the last ten weeks of chemo were saving Emma or doing nothing. My nightmares were from the later. What if it wasn't helping? What if that tumor was still growing? What if these ten weeks of nausea, driving, appointments, ER
trips, temperature readings and fights with the scale were all for nothing? The nightmares were worse then my reality and that is saying something. We arrived at 6am, got checked in, went into testing and waited. After Emma woke up crying from the anesthesia I rocked her like a baby while we both shared some tears.

An hour later we were in the Oncology department waiting for the results. Our Cancer Coordinator, Kim, walked in with a huge smile but she is always so happy and loving so I tried not to get my hope up. I read it but I didn't believe it, the tumors are shrinking! At one point her cancerous tumor around her optic nerve, the one that caused her to go blind, was traveling toward the other eye. It was going
Take that cancer, I get rainbows!
to cause all sorts of issues with her pituitary gland and possibly make her go blind in her other eye. There was no detected space between the tumor and the orbital chasm in our last test, today there was a 1cm space! What does this all mean? It means we are winning! It means we made the right choice, it means this suffering was all for something, it means there are rainbows ahead.

So what does this look like going forward? It will mean that Emma will continue chemo as planned, it is working and saving her life so we will keep it up. Hopefully the tumor continues to shrink and we can remove it entirely at some point. The road ahead will still be filled with trials but right now we have the first sign that we are fighting a battle that we might be able to win. One that I always knew Emma could win but now I have the proof in my hands!

We also have some amazing things coming up very soon. The launch of the Cancer Can Be Project will happen next week! Also, we heard back from Make a Wish and they let Emma pick between Disney World and Hawaii. After taking the weekend to look at videos of both places Emma picked Hawaii! So in January, during Emma's break from chemo, we will all be traveling to Aulani thanks to
What are you going to do next? We are going to Disneyland!
the amazing Make a Wish foundation! Also, once our dear friends at ABC News LA found out that Emma picked Hawaii they decided to gift her their own Disneyland passes so she could do BOTH wishes! This means that instead of sitting in a Neurologist's office being told our daughter has 6 brain tumors like last Christmas we will be playing at Disneyland this Christmas! After all the darkness over the last year we are overwhelmed with gratitude for all these blessings. A huge thank you to Make a Wish and Andrea and her co-workers at ABC News LA, we can't wait to let Emma go be a kid!

Our calendar cover! Go to to order next week or now to sign up a cancer warrior.

Wednesday, October 22, 2014

Family, Zoo and Appointments Too!

Emma with her sisters and cousins
Each trip to LA I am reminded about the importance of family. Not just the people with whom you share a genetic connection or marriage but the greater family you created yourself. The people that were with you through bad hair years and plaid skirts, they stood next to you when you said your wedding vows, held your hand while you birthed your first baby and are always there for you in good times and bad. Cancer made these amazing individuals even more involved in our lives. With out these loved ones we could not stand. This trip was lovely because we saw almost all of our support network.

wagon for three sisters at the zoo
Emma had a fun time playing with her grandparents, we went to the LA Zoo with her Auntie Amber and her cousins, we had playdates with friends and we had our surgical follow up at UC Irvine. We had good news from that appointment. Emma is healed from her surgery in June and cleared to get glasses. She passed her eye exam but because she only sees with one eye it strains toward the end of the day and gives her headaches. She also struggles to see in darkness and is constantly asking to turn lights on. We are hoping that by fixing even just the little correction she needs that it will help with her eye strain. So on the 4th, a year later almost to the day,
Emma with her Grandpa
Any leaf can be a wishing leaf!
we will head back to the original doctor who found our tumor and started our journey. So odd how things go full circle that way sometimes. I just got of the phone with his office filling them in on the last year. It sounds really horrible when I say it all at once. How far we have come, how much further we have to go, it is all so much...almost unbearable. But we stay strong because it is the only choice we have. I am often asked how I cope and my answer is always, "One day at a time, one appointment at a time." I rarely look forward more then just to our next appointment.

This week Emma has a chemo break so we get to decorate for Halloween and play. Next week Emma has an MRI to see if the chemo is helping her tumors.

I am shooting the last picture for the calendar this week and finalizing all the financial end of everything. I am hoping that by the first of November calendars will be available to purchase. If you have a child fighting cancer please go to Emma's website, and fill out the form so we can send you a calendar. I need to get the word out about the calendar so I will be posting photos this week with ordering information for you all to share on social media. Please
Emma and her twin Gracie
help us in finding cancer kids to inspire! Also, if you have a hospital you go to for oncology you can tell me where and who your cancer coordinator is and I will make sure a box of calendars is delivered to your oncology department before the holidays. If you have a business online or brick and mortar and you are willing to sell the calendars please contact me through the blog, Facebook or website.

Please surround us with prayer next week for the MRI, in an ideal world we would see the tumor shrinking. I want to kill that horrible beast forever and ever and let my child live a normal life. Die cancer die! It will be a hard day, time consuming and anxiety filled. Please remember to send us those thoughts and prayers on the 30th.

A huge thank you to the owners of Fitness Factor in Arcadia, Kevin and Maggie! They did a carwash for Emma to help pay some of her medical bills but more importantly they follow Emma's journey and surround us in love. We were so happy we got to stop in to see you all!

Monday, October 13, 2014

Hair and There

Emma had a blast at the beauty salon! She loved all the attention from the ladies there and sat nice and still for her cut. We were very happy to discover that instead of cutting off the curl which is what we expected would occur, her hair cut then curled down and covered her sparse areas! We were able to take her form 6-8" to 2-3" with an end result that looked both normal and adorable. You can only tell that she lost half her hair when it is wet. She is pretty upset that she lost the ablility to have piggy tails and french braids but I traded her those hairstyles for new headbands and hats. We can only hope and pray that this is where it ends with the hair loss but if more falls out we will deal with it in a hip, classy way.

This weekend we traveled to the nearby farm and pumpkin patch for a little fun. All three girls had a wonderful time running through hay mazes, petting goats and picking pumpkins. I love those days when we feel like a normal family and forget about cancer.

This Friday we are heading down to LA for a post surgical follow up, an in depth eye exam and a fitting for glasses. We can only do glasses if Emma still has enough sight to make it worth while. Sadly nerve damage is not something you can correct with spectacles so if Emma loses her sight it is gone forever or until the medical community finds a way to repair the nerve. While we are there it looks like ABC News will do a story on Emma! We are still working out the details but hopefully you will see our cutie pie on the news next week! We also worked in a trip to the LA Zoo with our Auntie and Uncle and brunch with family. It will be busy but it should be fun!

By the end of the week I should have all the Cancer Can Be photoshoots finished and we will move forward with printing! Some of you have asked how you can help, right now the immediate need is help with printing costs. We worked out a deal with Costco where they are giving us a $1 off each calendar and I can pick them up locally to save on shipping costs. If you feel so lead you can send us a Costco gift card that we can use to help pay for the printing. I am still working out how to get accounts set up so you all can buy a calendar with out it getting mixed up in our finances but not so involved that I have to start a nonprofit. It is a lot of red tape! The last thing we want is it to look like to the IRS is that we made a bunch of money and they start investigating us! It is hard working keeping everything above board.

Friday, October 10, 2014

Surrender to the Unknown

I know it is just hair. I am very aware of the fact that hair grows back. But it is not about the hair you see, it is about my reality day to day. On Thursday my kid has cancer, I watch her get poked with needles, I follow her around with an IV and sick bucket, I have a huge bag filled with medicines and
games and a list of things that make no sense unless you have done chemotherapy. (zip lock bags, can anyone guess why? Because you can zip it up after getting sick in the car so the rest of the ride you are not trying to pull over to find a trash can or smelling it). Thursdays are hard, they are draining, they are the worst day of the week. Friday-Wednesday I can pretend Emma is a normal kid. Sure I avoid crowds and have that odd list of things in my diaper bag along with medicine and a list of her doctor info but for the most part we are normal and I try really hard to keep it that way. I can pretend that she is not sick. I can pretend my life and hers did not get a whole lot harder with the C-word thrown in. Normal.

A bald head. Not normal. A constant reminder that she is sick, not normal. Again, these are MY issues. Emma is fine. I deal with these issues on my own, crying in private and only saying positive things about her appearence when she is around. My pretend world is crumbling and I am not sure what to do. So I cried, a lot then brushed off the tears and made Emma her first hair appointment. If
we are going to lose our hair then we are going to be stylish and look as normal as possible. None of this sparse hair or patchy looks, we are going to rock this thing. Today we are cutting her hair in a short, cute style. Maybe a pixie cut. Hopefully her hair remains sparse and we can keep rocking a short do. If not then Daddy will be buzz cut buddies with our girl. She got to pick out a couple hats and headbands to match her stylish outfits too.

While I am here I would like to comment on the Brittany Maynard situation.

Dear Brittany,
I will not preach to you, although we have a faith base I will leave God out of this and instead appeal to logic only.
My daughter has a form of the same brain tumor you are fighting. It is a juvenile, less aggressive form but along the same family. We were given a horrible diagnosis just like you. My three year old was told she had months to live. Possible a year with surgery and chemo treatments. They were wrong. We had the two top specialists revaluate her biopsy tissue and it came back as the juvenile form. My point is, doctors do not always get it right and they "practice" for a reason.
What would I tell my daughter if she was older? If her diagnosis was worse like yours? I would tell her to fight. Why fight a losing battle? Because as a mother, taking care of my sick child has made me a better person, less self involved and more faithful. I have learned to live one day at a time and I am learning not to worry about small things. Cancer puts life into perspective. Brittany, your life may be cut short but it will touch so many people. Your life will make them better in their lives. It will enrich, it will inspire, it will be worth living. Even when you are fully dependant on others your life has meaning. Those people will learn amazing life lessons that they would never learn if you quietly disappear. As a mother of a cancer child I ask to you reconsider what your suicide means to my daughter. What is that message you are sending to her? You are telling her that she is a burden to me and her life means nothing. How sad. The opposite is true, she is my everything and her life is doing amazing things for the world.
Brittany, choose to fight, choose to believe, and surrender to the unknown.
Anya - Emma's Mommy