Friday, February 27, 2015

She's a Fighter

Emma with Pippa, they love each other!
Lately we have been experiencing a lot of highs and lows back to back. We have been enjoying the nice weather by gardening and playing with our new family members Pippa, Birdie, and Lou Lou who are baby chicks. We have played in orchards filled with amazing flowers and we have completed many fun homeschool activities. This week of chemo also marked the half way point in Emma's first round of chemo. We do not know if this will be her only round of chemo but we do hope and pray that is the case.

We were also hit hard with viral infections. I started it early last week and it took a hold of me fast. A week and a half later it is still holding on to me. I kept praying it would spare Emma but yesterday she spiked a fever and began to show the same symptoms as myself so we had to take her to the ER. We also caught pink eye from the eye doctor's office last week and spread it from person to person, we finally got rid of that a few days ago. I feel like we just keep catching these icky bugs!
Last night in the ER

Emma is home from the ER now and resting. She is eating normally which is a great sign. I can usually tell how bad she feels by if she eats or not. Eating means she is alright. They ruled out sepsis, flu, RSV, and UTI last night and her immunity ANC numbers were high so they sent us home to fight on our own. We are checking in by phone to Oncology today and if Emma gets even a hint of a fever again I am just driving her down to Children's. If we are going to be inpatient I want it to be there.
Emma this morning

Emma's Auntie and I are working on a very cool project. Stay tuned for something magical inspired by these lyrics by ‪#‎jamiegrace‬ , Fighter.

"...she knows the name of every nurse she sees
And though she don't like the chemo
She waits it out, never losin' hope that
someday soon she'll be cancer-free.

She's a fighter, got that fire
when you thought she'd fade away
Throws a fist up, as she gets up
Feelin' stronger everyday
When she gets down on her knees, she finds the courage to believe
She's a fighter, she's a figher
Who inspires me, oohooo
She inspires me."

Thursday, February 19, 2015

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. 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!

Wednesday, February 11, 2015

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

Wednesday, February 4, 2015

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!