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 throughemmaseye@gmail.com 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

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, www.throughemmaseye.weebly.com. 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.

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!"

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 www.throughemmaseye.weebly.com to order next week or now to sign up a cancer warrior.

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, www.throughemmaseye.weebly.com 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!

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.

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.
Love,
Anya - Emma's Mommy