Friday, January 23, 2015

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!

Friday, January 9, 2015

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.

Wednesday, January 7, 2015

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.

Sunday, January 4, 2015

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!