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!"