Inspirational Girl

Emma's project, Cancer Can Be, won her the Matilda Jane Inspirational Girl award! She got to pick a dress from their new line and then they surprised us by sending two more tops, a pair of pants and a sweater with scarf for me! It really made our day!

Emma is adjusting to her new chemo, the side effects we experienced at the switch are slowly getting less noticeable. Overall I think it was a good change. Her hair feels thicker and I cannot tell if it is wishful thinking or true but it seems to be growing! She has less nausea too. I have noticed she tires easily and needs to "rest" after activities like gardening or playing with her sisters. Her thyroid tests came back normal which should be a good thing but instead that might point to nerve damage from the chemo. She is complaining less about her legs hurting and being cold but it still worries me. Applying Frankincense to her several times a day seems to be helping.

This week was interesting because I got sick. This house does not have time for Mama to be down! I caught some weird viral thing, my doctor said it is not flu but it is viral and just to ride it out. We stayed home yesterday for me to rest and I woke up today with no voice but feeling more like myself. Now I am praying Emma does not catch it from me, her immunity numbers are good right now but she does get sickies easily.

The last thing I want to address is something that was brought to my attention this week. My best friend had a horrible thing happen, someone stole a picture of her daughter from her blog and claimed it was their child that died. They set up a GoFundMe account and were posting all over social media asking for help. This issue is still being addressed by the police and proper authorities. It made me nervous that someone could do something like this with Emma. I wanted to publicly state that the only fundraiser we have going right now for Emma is her gofundme that has been set up since May. http://www.gofundme.com/8f91r8 If anyone sees any other fundraising attempt with Emma's picture or information please notify us right away. If we do any other fundraisers they will be announced here on the blog and on her Facebook page. We really want to protect Emma's public figure status and your charity by insuring it goes toward helping Emma and nothing else!

Good For The Soul

I believe with my full heart that gardening and farming are good for your soul. There is something so fulfilling about weeding out garden beds, planting seeds then nursing them into food that your family consumes with pleasure. It feels so human, so right. I think it goes back to humanity's time in the Garden of Eden. Somehow I feel closer to God. It also helps that we get a good does of vitamin D from the sunshine, many giggles as we get our hands dirty, and smiles from neighbors or mail man as they walk by. The last week or so the girls and I have been weeding out from the winter and preparing our food garden but also our front flower beds for Spring. This was the first year that Emma really showed an interest. She begs to go out to our little farm every morning and loves to go to the garden store with me to pick pretty flowers to plant. Lately everything must be purple so if you see all purple flowers and Emma constantly wearing purple clothes that is just par for the course! Everything, and I mean everything, must be purple!

We finished week 2 of the new chemo protocol. I am noticing that Emma is experiencing a pins and needles sensation in her legs but my biggest concern is she has a very hard time regulating her body temperature now. When she runs around she gets hot and has a hard time cooling down on her own, I have to take layers off and put cool wet cloths on her. When she gets cold she just cannot get warm, even with blankets and layers. We are running tests to determine if this is a side effect of the treatment or if she has developed an issue like an under active thyroid.

Emma's new glasses arrived, I will give you all one guess as to who picked them! She loves them so that is all that matters. We finally gave up looking for her original purple pair, she lost them just before Hawaii and they have never been found. I hope they turn up but while we look we have a very cute pair to help us see better!

Emma in her Zoobug Daisy glasses

Back Down to Earth

Since returning from Hawaii I feel like a person who had a near death experience and saw heaven
only to be taken back down to earth. It was a hard, cold return back to reality. All of us are still adjusting to normal life again but trying to keep happy Aloha feelings in our hearts with Hawaiian music and our fun Hawaiian bedroom theme. This week our photos from Sweet Delight Photography arrived. They are so beautiful and make us so happy!

It is only Wednesday but it feels like the week should be over already! Daddy took Emma to her chemo appointment on Monday giving her sisters and I a much needed break. Then yesterday we had an exhausting experience I would like to share. Emma and her sisters were in the "Monster Hour" time of the day, that point at the end of a day when kids go nuts with energy but it is too late to throw them outside in the backyard. She was running around the house playing tickle monster with her sisters for about half an hour then came up to me and said her tummy hurt. This has happened before, ever since starting chemo if she runs around she get nauseated. So I bundled her up on the couch with a blanket, her lovey and some apple juice and told her to relax for a little. I went to check on her 15 minutes later and she was warm to the touch, I got the thermometer and sure enough she was running hot. Daddy came home and we continued to monitor. Her fever slowly climbed but she remained happy and ate dinner with seconds and thirds. Then she got so high that she was borderline to take her to the ER based on Oncology protocol. We had to make a choice. The ER is a frightening place for an immune compromised child right now. The local hospital posted on their Facebook the other day that they are receiving 400 cases of the flu a day! Plus the Measles made it's way into our area. We decided that if she was hot from over doing it with play the fever would come down, if she was sick then the fever would climb. A friend of ours who recently passed away from cancer told us that when he was on chemo he had a hard time regulating his body temperature. If he went outside on a hot day to garden he would get a fever and have to take a cold shower to come down. Only monitoring would tell which one. I grabbed my essential oils, Frankincense, Balance and Serenity. Oils that would center her but not create a false "cold" in her body. Every 15 minutes I took her temperature and rubbed Frankincense with Balance down her spine and Serenity on her feet and legs. After 90 minutes she was back to her warm range that she usually sits in the day after chemo. We put her to bed diffusing the same oils and continued to sneak in to monitor her, by morning she was a normal 98.6 and begging for Mickey Mouse waffles! It amazes me how powerful these oils are and I am so grateful that our careful thinking and essential oils kept Emma out of the ER last night. (Side note: If Emma had been lethargic or clearly over the

Emma with her surf board craft

danger zone with her temperature we would have taken her in right away.)

So what is on the agenda for the rest of the week? Warm weather brought on gardening season so we are going to continue planting for Spring today. The girls have their own child sized tools to help me plant our rainbow carrots, bell peppers, raspberries and flowers. We also have some baking lessons and painting to do!

Today is World Cancer Day, share publicly to create awareness and policy change!

Heidenberg Ohana in Hawaii - Make a Wish

"You cannot stop the waves but you can learn to surf" It was this Hawaiian proverb we chose to print on our Make a Wish shirts and have as our theme for the trip. I will admit that at one point in that very long plane ride there with three littles bouncing off the cabin walls I thought to myself that we must be crazy to do this but then we got off the plane. Fresh clean air, leias, the Aloha greeting...this family was made for island living!

The people were amazing, the resort was nothing short of heaven, the food was delicious and the

views were breath taking. As amazing as our surroundings were on this trip I could not take my eyes off the three smiling faces of our children, especially Emma. This last year was rough and it just seemed to get worse and worse. There were many many tears but on this trip all I saw was smiles and all I heard were giggles. Pool time, beach time, character meetings, luau...they loved it all. Honestly, I have never had this much fun in my entire life. It even topped our honeymoon and vacations we took before children.

We planned each day only a few hours in advance reading the children and what they wanted to do. We managed to pack in a spa day for Emma, she had her nails and make up done. Also a day in the beach cabana, a night at a luau and lots of time in the splash zone. Disney may have it's faults and anyone that knows me well has heard my rant on Disney princesses and why they are not allowed in our home. However, this resort they did right. Everything was easy with kids. The pools were all slanted like a beach instead of a stair entry so it made it easy for us to sit in the shallow end and play. The girls loved the splash zone and we did too because there was only a few inches of water on the ground so we could actually relax and let the girls have fun with out worrying too much about them getting in over their heads.

I could go on and on about how much we loved everything but this blog post would turn into a novel! Instead I will just tell you Emma's favorites. Emma loved meeting up with her Mouse friends Mickey and Minnie. One of the days we found Stitch! She made space goo with him. She loved that the pancakes and waffles were Mickey faces, now I have to find a Mouse waffle iron! Funny enough she hated the sand. This little princess does not like to get "dirty" and apparently sand counts as dirt...who knew?! She was okay with us carrying her to the water and she loved sitting on this floating board they had in the water with her Daddy.

The Heidenberg Ohana would like to extend Mahalo to Make a Wish from the bottom of our hearts. This vacation was just what we needed. One day, hopefully soon in the next couple years, we hope to go back! Until then the spirit of Aloha lives in our hearts. I am trying to figure out a way to be involved with Make a Wish and help other families have an amazing trip like we did, every cancer warrior should have a wonderful time like our Emma! Thank you to all the staff at Aulani that made things easier for the family and special for Emma. Every single person was so sweet and caring and attentive.

Here are some highlights!

Just Breathe

Your kid can't breathe. Thankfully these moments do not happen to a parent often because when they do I think we age 10 years. When we began chemo the doctors explained that one of Emma's drugs can develop an allergy in about half of the children. She went months with no reaction so sadly our guard was down. It started with red circles around her eyes. Then she started coughing...but she always coughs during chemo because she gets some nausea but the tummy meds prevent her tossing her cookies. So she coughs. But this cough sounded off. Then in seconds her entire body burst out this terrible red patchy rash and she began to itch. She was having trouble breathing. Everything went in slow motion. The nurse rushing in, the doctor checking vitals the other nurse pushing meds in her mediport and me holding her hand. The medication worked fast, in a minute she was breathing normally and in about ten minutes her rash stopped itching. It took about an hour for the redness to go away.

Emma's main doctor who does her "road map" (a plan of medications with a timeline and dosage) is out of the country for another two weeks. He is only reachable by email. The doctor we saw yesterday told me that in these cases they typically pretreat, meaning, they continue to give her the chemo but give her the meds for an allergic reaction first...does this sound crazy to anyone else? I know I did not go to medical school but giving a child a medication that we KNOW causes a severe

Once she was stable, it was much worse!

allergic reaction just seems like playing with fire. I told the entire team that under no circumstances whatsoever are they to ever, ever, ever give her that medication ever again. Ever. We decided to give her a break from chemo next week and just do lab work to make sure she is healthy enough for Hawaii then when we get back we will have a team meeting about where to go from here.

For today and perhaps the next day or two we will be watching her for another allergic reaction because she got about 1/3 of her chemo before we stopped. It is still in her system. They sent me home with medication in case she gets a flair up. Needless to say I will not be doing much relaxing or sleeping until I know she is safe for good.

Long day. Just breathe.

We Got Cabin Fever!

An Emma fly! Wings from The Dainty Warrior.

"I got cabin fever it's burning in my brain. I've got cabin fever it's driving me insane. We got cabin fever, we're flipping our bandanas" If you have never seen Muppet Treasure Island it is worth watching just for this song! Anyone with toddlers will tell you that it is hard to go anywhere but it is even harder to never go anywhere! Day three of staying home with Emma to protect her fragile immune system and allow her to get healthy is bringing us all a little cabin fever. Muppet Treasure Island "We Got Cabin Fever"

Today we are going to do some Valentine's day crafts to give to our friends next month and tomorrow we have chemo. If you are wondering about the timeline we have chemo again next Wednesday then

next Friday we leave for Hawaii. That is why we are staying home. I cannot risk Emma catching another virus before we leave and having a second family vacation in a children's hospital. I asked Make a Wish how they keep immune compromised kids safe on an airplane. I worry because the air gets recirculated and filtered but you cannot filter out a virus. We will be wearing masks but she is a three year old and pulls at it a lot. If any chemo parents have advice we would love to hear your ideas!

Last bit of housekeeping, we seem to be getting more public lately. I see this as both good and bad, but mostly good. We really focus on paying it forward so the more people who follow our story the more likely we are to inspire people to advocate for childhood cancer research, donate jammies or toys to a children's hospital, and help us give away inspirational calendars. The flip side is lately I am

getting a lot of spam. That is why all comments on the blog must be approved now and I watch the Facebook like a hawk deleting things. Sometimes I do not get to it fast enough and in that case please alert me. Also, I would like to state for the record that we DO believe in natural medicine, in fact, our family is very natural, we have a Waldorf home. We are an organic eating, essential oils using, no sugar, whole grain family. If you are selling a natural medicine or a shake or a food program and think it will cure my child's brain cancer I am sorry but you will only get a laugh from us and a polite no thank you. We did only natural for a year and in that year Emma's tumor grew and became much more serious. There is a time and place for natural medicine and we now fully believe that it goes right along side modern medicine for Emma. We do both and we feel comfortable with that choice, our doctors fully support that choice as well. I realize this makes some people uncomfortable but Emma's condition is very serious. We have not fully disclosed her diagnosis and we never will but we will tell you that is a type of tumor that if not treated aggressively will advance from treatable to a few months to live overnight. If you only get one shot to kill something throw everything at it! If you are itching for more details I wrote a blog post a few months back, "Natural Mom Confessions, I Chose Chemo".

A huge thank you to everyone who prayed for us in the hospital and a heartfelt we love you to Grandma and Grandpa, Leia, Katie, Andrea, and Sarah for going above and beyond in the hospital and arriving home. With out your help things would have been unbearable.

This Was Not A Vacation

Before the hospital

Understatement of the year so far, this was not a vacation. We left for Disneyland with high immunity numbers and a blessing from our doctor team. We had a full day here before Disney to rest from the car ride. We played with grandparents and had breakfast with friends. It was dinner when we knew something was off with Emma. I took her temperature and gave Brad the look. He just sighed, we knew we would never make it to Disneyland. An hour later we were at Children's Hospital of Orange County.

A couple hours later we were being admitted which started three days and two nights at CHOC. They ran all sorts of tests and checked vitals every two hours. The tests all came back negative and her ANC (blood count that represents immune response) kept declining. For me it was also concerning to see very labored breathing and low blood pressure. All we really knew was she was fighting something viral and had no immune system to fight it off.

Not happy :(

Daddy stayed with her in the hospital since baby sister needed mommy at night and she could not stay past 8pm. Neither of us got any sleep. On the third day her ANC numbers mysteriously quadrupled into the safe range. Who knows why, our team was baffled. They ran a few more tests then let us go home.

This was not a good start to 2015. I had so much hope starting a new year off right and on New Years Day we land in the inpatient wing...oh the irony. I'm disheartened, grumpy, and ready to throw an adult tantrum about missing my family vacation. Not cool.

Sleeping in the cot

The name of the game now is house arrest. We will be staying home with Emma until Hawaii. Hopefully this allows her numbers to go up and prevents her from catching anything new before our trip. If we do leave the house it will be in masks or for doctor visits. I said on the facebook page the other day that we could use meals this week. If anyone is willing to help with meals that would be amazing. We will be limiting visitors as well so please be understanding if you stop by and only I come out on the porch to chat. This will be hard for me this week because I tend to get cabin fever easily so please keep chatting online with us!

Cora in the Disney wing of CHOC, as close as we got to Disney

We also really need prayer, this was depressing. I told my sister yesterday that at least we were down here with help. Emma was going to be sick here or at home so I would rather have been hospitalized down here where Grandma and Grandpa could help us with Gracie. But it does feel like every time we try to do something normal we get pulled back into cancerland. It is a constant reminder that our child is sick, don't try to have fun because your kid will not be able to do it. One day we will get to Disneyland but it will be unplanned. I put the tickets in the car and next LA visit we will have one day with no plans, if everyone wakes up bright eyed then we will surprise them with Disneyland. I just can't do the let down again!

Leaving the hospital!