Tuesday, March 24, 2015

Walk the Line

These days I feel myself walking a line. One one side is a normal childhood for Emma and on the other side is a safe, sterile, plastic bubble life. Before Emma was sick I was a teacher and I hated helicopter parents. I wanted these children to live and experience for themselves. To run and be free and touch everything, to learn about the world through living in the world. I parented this way too...then Emma got sick. Suddenly I became superhuman with the ability to see germs everywhere. Everything was dirty, everything needed to be cleaned before Emma touched it, every well meaning person in public was just an incubator for disease. The disease that might put Emma in the hospital, the disease that might kill my immune compromised child.

Sister dress set, the only way to chemo!
We spent about a month passing illness around from one person to another in our home. Emma was in and out of doctor offices and the hospital as well as the ER. This week she was much better and her numbers were good but I found myself in a compromising position...do I let her play out in the world or do I keep her home and protect her from getting anything? As most of you know we follow other cancer warriors, this week our friend Sophie got news that her tumor has become extremely aggressive and was sent home with hospice. I realized that Emma has just this one life to live, however long that is we do not know but I want her live it. I want her to have happy memories during this time of her life and hopefully as an adult she looks back and can say that she had a good childhood despite cancer.

So we decided let her live life outloud as long as numbers are high and we take sanitizer with us. She went on a Mommy date to her first movie on Sunday, we saw Cinderella. She did really well for a not-quite-4 year old! I am impressed with how well she did. Then yesterday happened...

chemo buddies
Yesterday chemo could have had better news, Emma's numbers are cause for concern and while we were there Daddy called us to say Gracie had a fever of 103 at home. The Oncology team and I had a long conversation about what these constant trips to the ER for fever could mean. She has spiked a fever over 103 five times the day after chemo since Nov. It could be that she keeps picking up viral bugs or it could be that she has a minor infection in her central line. If it is the later she she keeps spiking high fevers they might want to subject her to another surgery to switch out the line. I personally think that the fever is Emma's way of fighting the chemo, each person reacts to medicine in different ways and this might just be Emma's reaction. The main Oncologist suggested pulling her out of day care and preschool and I just laughed...my girls have never been to either! We homeschool and they rarely have a babysitter and have never been in daycare. Now I am back at square one, does anyone have a plastic bubble we can use?

Emma got news this week that KABC friends of ours gifted our family a night at the Grand
Californian at Disneyland! That combined with a generous family gift made it possible for us to book a birthday trip to Disneyland for Emma & Gracie's 4th birthday on May 1st! If anyone has any fun ideas of things to do while we are there please let us know! So far I have breakfast with the characters and appointments at the Bippity Boppity Boutique for the birthday girls planned. I really hope that we can make this a magical birthday for Emma and get her twin sister Gracie some much needed fun that centers around her for a change. A huge thank you to our friends who helped make this possible.

Tuesday, March 17, 2015

Not Lucky But Blessed

Emma and her twin Gracie
 A theme of St. Patrick's day is "luck". Everywhere you look today you will see lucky four leaf clovers, rainbows with pots of gold, and all things green. It is a day of silly fun that I have loved since childhood. Today as I think about the word luck I ponder it's true meaning. I would consider myself to be a very unlucky person. In fact, if there is a very small chance of us hitting a harder step in Emma's process we always hit it. Statistics mean nothing to us because we always seem to be in that tiny 4% of kids that get xyz. When it comes down to it we are unlucky but I would consider us blessed. We are blessed to have all of you fighting with us and for us. To have help of friends when we are in need. To have a God who cries with us and turns a bad situation into a way to inspire and bless others. Yes, we are very unlucky. Cancer chose us. However, we are truly blessed and that is because of all of you!

Our Fighter Campaign went really well. We raised $475 to put care baskets together for kids who are fighting illness. We have three little girls that we are hand picking items for their baskets this week. We are also going to put together a couple generic baskets that could work for different age ranges to hold on to when we hear about a new child in need. I am using some of the funds to make Emma a basket as well so the next time she is inpatient she has her own basket of love to keep her happy. If anyone hand creates anything that would be appropriate or if you would like to donate gift box items please email us at throughemmaseye@gmail.com. The plan is to build the boxes over the next couple weeks, we will take pictures of them before we send them out!

Thank you to these amazing people who fight along side us and supported the cause!
LuAnn, Quinn, Paul, Kathy, Andrea, Lauren, Abbe, Amy, James, Julie, Jennifer, Theresa, Holly and Jean!

Chemo went well yesterday...as well as can be expected after a week of sickness. Her blood count numbers are back to normal so that is sign she is finished fighting the virus. She has a residual cough but the doctor ran tests and it is nothing that needs a treatment, just an annoyance. It has created a
little extra fun for us because chemo makes her nauseated so a cough makes her throw up even more. The drive home was interesting to say the least. She is in good spirits this morning. As you can see in the St. Patrick's Day photo she was not standing still for long! Hopefully we stay out of the hospital this week, all the extra stress from last week brought my stomach ulcer back so we all need some quiet!

Thursday, March 12, 2015

Ground Rules

Those of you who know me know that before Emma got sick I did not have a cell phone. Yes, it is true, I lived with out a cell phone! I hate cell phones and the culture that surrounds those horrid devices. One of my biggest pet peeves is that people feel like they have the right to contact you anytime, anywhere, for anything. No one respects the 9am to 9pm rule, people call you from
Emma, feeling much better today!
restrooms, text while driving, and want you to answer no matter what you are doing. Dinner time and family time are interrupted. The phone goes off while you sleep. Can you tell I hate them? Except that Emma must have one. I know that so I have a pay per month plan with no contract and very little data just in case I need to email a doctor.

Why did I go on my little rant? Because it is time to tell Emma's community some ground rules. This community that built up is amazing, supportive and fabulous. We love you and 99% of you are so fantastic there are not enough words to thank you. To those people I apologize that I must write the what is below. For that last 1% I need to say the following,

- When we are hospitalized is not the time to send messages asking us to do things for you or continue family spats. Especially the later. Those can wait until we are back on our feet please. From now on messages and requests that require extra brain power or time will be addressed the week after we arrive home.

- We are not interested in buying any nutritional shakes, miracle cancer cures, etc. If you have scientific peer reviewed studies, trials, or know of speacialists we would very much like to hear about those. We are not game for doctors that are under federal investigation for patients dying with their supposed "cures" or supplements that cured cancer for random people but cannot be backed by science. Please respect this and stop trying to sell us things. We do not have any money anyway!

Again, we are so grateful for all the help that people give us. In particular; Andrea who has become like an Aunt / guardian angel to Emma, Katie who selflessly watches Gracie several times a month for appointments, our church who prays for us and helps us with medical bills, my amazing friends who chat with me online and keep me upbeat, our fellow cancer friends that remind me to keep things in perspective, Leslie for always sending Emma little extras, Kayleigh and her friends who gifted me a Tula to make it easier at appointments, Cora's due date club gals who have been amazing during this whole process and most importantly my sister Amber who is my rock (I could write a whole post on how much I love her...no several posts).

So to sum up I do hate cell phones but I have learned to love Emma's phone because it keeps us connected to all of you. So I guess you could say that you all changed my mind. And I do wish I did not have to write this blog post but this week it was really extra hard.

Tuesday, March 10, 2015

Spring Renewal

Spring came early in Farm Country. We have been switching back and forth between sunny days and Spring showers. The girls are happy to have some sun, we have been enjoying sidewalk chalk, gardening, bubble parties, and some Spring cleaning. This week we made lent gardens with our friends. It is a small bowl of dirt with a pot that you lay on its side to make a tomb of Jesus, three wooden crosses and some grass seeds. When you first make it the whole thing is barren, waiting for the resurrection of life in the dirt. Just like we planted seeds in the dirt hoping for grass to grow by Easter, God has planted seeds of hope in our hearts. We hope for the day that we are free from cancer and can fully enjoy life.

 Until then we do our best to maintain a normal day and I fiercely protect Emma's childhood. Unlike my childhood I want her to be free from financial worries, always have a parent available to her, less focus on education and more focus on creating a love of learning and being out in nature, raising animals, and traveling.

Each year around Spring time I clean out our closets and home from clutter we built up over the winter. I also clean out our garden and yard weeding out all the plants that grew during the months of cold and frost. It is not only literal, it is emotional as well. We focus on cleaning out our bad thoughts, worries and the lack of trust in God's plan that built up over the months of darkness. This Spring I
hope to clear out my depression about our situation. I know I put on a smile and what most of you see is a happy Emma and a smiling mother. That is us, that is real. But when she goes to sleep I look like Frodo bringing the ring to Mordor, clutching my coffee with white knuckles, brushing back my unshowered hair, and shedding a few silent tears for my poor baby who suffers everyday. I cannot stop my feelings of sorrow but I can prevent the dark cloud I feel follows me everywhere I go. So off to counseling and the family doctor I went a few months ago and now as Spring comes into bloom I finally feel a rainbow spreading across the sky. I urge our fellow warriors friends not to ignore the dark cloud, you can feel better. Get help. I am so glad I did.

Emma had a chemo day yesterday, we scheduled her next MRI scan for the end of April to see if the new protocol is as effective as her old one. I know it sounds funny but on this chemo she has been doing really well...and that worries me. I have a nagging voice in my head saying that chemo she does this well on cannot be effective against her aggressive cancer. I hope I am wrong. I hope all our natural remedies at home have helped ease side effects and it is still killing our nasty cancer. I hope. Her blood counts were elevated which is a concern because it could mean her body is getting ready to be sick. Typically in cancer patients their bodies will try to fight something as soon as it gets hit but because they are immune compromised the counts elevate then crash. It is that crash that causes us to become inpatient because she cannot fight infections on her own. Please pray that she stays healthy and out of the hospital!

Last little note, we are so grateful for everyone's help and prayer over the last year. It means the world to us! Emma's fundraising reserves are running low and will be empty soon because we are paying out medical bills that insurance did not cover. We are also funding Emma necessities such as glasses, co-pays, prescriptions, and gas money to and from the hospital. If anyone is looking for a way to help us we could really use gas cards, new busy work for trips, and food for chemo days / hospital stays.  We have one more week to help with our Fighter Campaign. Please consider helping us help others as well! http://www.booster.com/throughemmaseye

Tuesday, March 3, 2015

Fighter Campaign

 Someday we will be free but until then we smile and dance through the pain. 
Designed by Rooted and Restored

Emma and I find a lot of happiness in helping others. It makes facing our lot in life easier to know that we can help someone else in a similar situation. Lately our friends have hit hard times. We have cancer friends who are constantly inpatient or facing cancer so rare that no one has treatments. We have friends who have been hospitalized for kidney failure and battle blood tests and hospitalization just like we do. Sadly, we also have friends who go home to God through illness or accident. The old saying, "When it rains it pours" has been true for us the last two months. so much illness, so much tragedy.

The original picture of Emma in the Naomi dress in an almond blossom orchard.

I cannot just sit and watch but how do you help someone who is drowning when you are right next to them drowning as well? So Emma and I came up with the Fighter campaign. We are selling prints and shirts that Emma's Aunt Amber designed from a picture of Emma wearing Well Dressed Wolf's Naomi dress. We are taking the profits from the sales and making custom care baskets for other kids we hear of facing challenges. So far we think the baskets will contain busy work like crafts and toys, jammies, favorite character pieces like princesses or super heroes, dress up stuff, and snacks. For Mom and Dad we will add gas cards, Starbucks cards and if possible arrange for meals to be delivered to their home or hospital.

Find this print at Rooted and Restored on Etsy
Along with purchasing our awesome shirts in toddler, ladies or unisex adult and our prints you can also donate items for the baskets and send them to our PO Box.  
Emma Heidenberg
c/o Brad Heidenberg
PO Box 576283
Modesto, CA 95357

Please make sure that anything you send is new and sealed because most of these kids are immune compromised. Most of the kids like characters such as Doc Mc Stuffins, Princess Sophia, Disney princesses, Elmo, Mickey and Minnie Mouse, comic superheroes and Cars characters. The kids tend to wear sizes 2t-4t if you decide to donate jammies or shirts. Slightly bigger or smaller is fine but most of the kids we come across are ages 18m to 5 years.

Please help spread the word, the shirt campaign ends March 15th.

Emma update: She is better since the ER visit and yesterday at chemo had no signs of illness anymore so we are officially over our viral bug! On the way home yesterday a semi truck lost a bolt and it crashed into our windshield. We are all okay thanks to the protection of God but shaken up and need to deal with fixing the car now with money we do not have. We would appreciate prayer moving forward.