Saturday, August 30, 2014

Official Initiation

The life of a chemo kid is complex. In my purse you will find an array of odd things that most people
do not carry; topical numbing cream, an orbital temperature thermometer, tegaderm tape, gummy bear bribes, and a chemo port info card. That is just the beginning and as we discovered yesterday, weekly chemo visits are not always the end to your hospital stay for the week.

Yesterday Emma was quiet, easy going and peaceful. That sounds nice to a normal parent but to me it was a huge red flag that she did not feel well. I took her temperature and it read 101.4, oh we go! For people who are new to the chemo world any fever of over 101 is considered an emergency and earns you a ticket to the nearest ER. The reason is her chemo port creates a central line, if an infection occurs in a central line then it can result in death in a very short time span. The
first sign is usually fever. She was not feeling well and spiked a fever so off we went. It was our first and most likely not our last unexpected trip.

We dropped Gracie off at a dear friend's house and prepared for a day of waiting and tests. Thankfully her tests came back no sepsis which is the deadly infection I mentioned. The only negative is we have no idea what caused her fever. We were sent home with one shot of antibiotics to prevent an infection from the ER and told to monitor her and bring her back if she spikes a fever again.

 Sadly this is the life of a chemo kid and one we hope to leave behind very soon. 

Thank you  to all our prayer warriors on our Facebook page leaving us encouraging messages yesterday and a huge thank you to Sandy, my chemo mom buddy, who helped talk me through my first crisis. We love you!

In news that is much more fun, our Trunk Keeper for our Matilda Jane clothes is hosting a party online for Emma and donating her commission to Emma! She is such a sweetheart! I know you all love Emma's clothes, she does too. This girl is quite the little fashionista. If you would like to buy some clothes for your little girl or for yourself, I wear a lot of their mama line which is very flattering, please do so this Monday and Tuesday through Leslie so little Emma get's the credit. Here is a link to the party, Emma's Matilda Jane Party or you can contact me through our Facebook page and I will get everything to Leslie.

Tuesday, August 26, 2014

A New Twist

Childhood is magical, little girls especially have this pure view on the world. It sparkles. It is full of fireflies and fairies, princesses who ride off into the sunset, castles, gnomes, and flowers as tall as a tree. To see the world through the eyes of a child is to see a story book. So is it not fitting that our calender project look childlike? The face of Cancer Can Be has morphed into a fairy tale. Emma will take our little cancer warriors on a journey all year to far away lands and bring some magic back into their world. It's about being a child and loving life for what it can be and what we hope it to be again soon.

For those who went before us, 
To those who fight at our side,
 For those who won the battle, 
To those who come along for the ride; 
We dedicate this project to you and hope it inspires you too.

Emma is wearing Persnickety's Princess Millie dress which donates money to childhood cancer families.

The Cancer Can Be Project...coming soon 

Preordering begins on September 1st to kick off Childhood Awareness Month. For every calender you buy a childhood cancer warrior will receive one free for the holidays. If you have a cancer warrior in mind please contact us on our Facebook page to get on the list. I am still working out pricing and if you would like to be a sponsor we still have a need!

Thursday, August 21, 2014

Settling In

We went into today armed for battle. I had eight hours of activites, snacks, a good friend to help for the first three hours and coffee. Of course when you are prepared then you get out in half the time...but no complaints here! We were in and out today in 4.5 hours. It was still all day since we drive for 4 hours total but it was easier to stay sane with half the visit time. A huge thank you to Tracey for playing with Gracie and Michiko for being our chemo buddy today. It is still not easy but I think we are already getting the hang of this chemo thing. The doctors said Emma is responding really well so far, her blood work is great and she is active. They think her hyperactivity is due to the chemo actually making her feel better...I think that is a little silly. Maybe it is all this extra love from all of you!

Don't forget that September is Childhood Cancer Awareness month! Together we can raise awareness and increase funding. In a couple weeks go GOLD for Emma!

Tuesday, August 19, 2014

"I can't go back to yesterday because I was a different person then." - Alice

Our first week following chemotherapy was not at all what I expected. We were told Emma would be tired and have bad nausea. Well the second was true. Tired? What is tired when you are three years old? Emma ran circles around us all week. I am not sure if it was a good thing or bad that she had so much energy. Mostly I am worried she is not slowing down enough to let her body relax and heal. It will be something we will have to discuss with her doctors on Thursday.

In other news Emma and Gracie officially began preschool this week. We did casual homeschooling lessons over the Spring and Summer with other homeschooling families but we finally began our own routine. The girls took first day of school pictures and had a little fun. The picture of them hugging
the tree was not staged, that is just who my girls are in real life. Goofy, fun loving and a ham for the camera.

We also began Emma's photo shoots for her Cancer Can Be... project. We will be doing a shoot or two each weekend and finishing up in October to print in time for the holidays. If anyone has any leads on printers who would be willing to give us a deal so we can afford to give them for free to other girls with cancer that would be awesome. We are also looking for sponsors so we can help cover gifting costs. If you are interested in becoming a sponsor here are the two options we have thought of,

1. Help with the cost of giving the calendars for free to Cancer Warriors or the production costs of the project and you get a space on the inside title page for your logo and 100 character space to write something inspirational or about your company / organization.

2. Organize for us to sell the calender through your company or organization with your help in advertising the project and you get a space on the inside title page for your logo and 100 character space to write something inspirational or about your company / organization.

I will post more sneak peeks as time goes on!

Lastly there are new ways to follow our journey, Emma has her own Facebook page now and we have a Twitter @throughemmaseye 

Sunday, August 17, 2014

Cancer Can Be...

For those who went before us,
To those who fight at our side,
For those who won the battle,
To those who come along for the ride;
We dedicate this project to you and hope it inspires you too.

- Coming soon: Cancer Can Be... -

Thursday, August 14, 2014

Thrown In The Deep End

Today I was thrown into the deep end. No hand holding, no explanations. Just thrown in. I thought I was prepared. I had Emma snacks, busy activities, diapers, wipes, hand bag was full of tricks. I woke up behind because I woke up with such bad anxiety about today that I was sick and couldn't hold down water let alone food. I was told to expect the day to last 2-3 hours, laughable. When we reached hour 4 and Emma was only hooked up to IV fluids, no doctor was in sight, I was feeling faint and Cora slapped my water out of my hand drenching both of us I knew it was going to be a long day. And it was.

I finally told a nurse in passing it was our first chemo day and she took pity on me and described what to expect. One would think a Children' hospital would have someone there to help newbies!

We busted out of hospital jail at 5pm, we arrived just after 10:30am. I am beginning to realize that
with the two hour drive each way this once a week nightmare will take the entire day every single week. It suddenly occurred to me that I not only need help watching our other children but I need someone to come with me to the hospital as emotional and physical support. It is dawning on me how horrifying this situation has become and will continue to be for the next year.

In all this mess Emma did great. We had some meltdowns while accessing her port, I held her and we both cried and then Cora joined us. For the day she mostly she just played and got tangled up in her IV cords and asked if she could go home. I don't know if it is a good thing or a bad thing that she doesn't fully understand what is going on, part of me wishes I didn't know everything. I talked to the Oncologist today while we were there. It appears that her cancerous tumor has taken a temporary
break from growing but another one that we have been watching that is deeper in her brain has taken to growing in size. Hopefully the chemo will kill them both. I hate you tumors, it is time to die!

Please pray for us as we march onward and if anyone has an leads on babysitters please contact me. Emma and I will be doing her first photoshoot for her inspirational project this Saturday to lift our spirits and to put a face to the project for our sponsors.

Monday, August 11, 2014

We Will Label This A "Win"

This week of recovery was an emotional roller coaster. One thing that did not sit well with me is our conflicting diagnosis reports from UC Irvine and Boston. Irvine basically gave her a death sentence, I didn't tell you all how bad it was because I did not want to admit it to myself. We just didn't talk about it...ever. Boston came back with a less severe diagnosis of a juvenile form of the same type of cancer. They were night and day different. Well no one can ever tell me just to accept a large
Water fountains are fun, and fewer germs then parks!
discrepancy, you messed with the wrong Mommy! I was on the phone with UC Irvine right away to ask why they gave her that diagnosis. The response was that they were sure they were right but they would look at Boston's report and take a second look at her slides then get back to me. My phone rang later that day with an apology for the misdiagnosis and they believed Boston was correct. I should feel better, right? Wrong. Now I just felt angry that I had spent several weeks trying not to think about how my child was going to die a horrible death in the very near future. I was also mad that we spent a lot more money to get second and third opinions. Last I wanted to hear from UCSF before getting too excited.

I talked to our Oncologist today he said that UCSF gave Emma the less severe juvenile diagnosis. Even better he said that the tumor has not spread yet and if we begin chemo before it begins to spread then she has a 75% chance that it will stop growing or even shrink! This Thursday we will begin weekly chemo treatments of two different drugs for a period of one year. Hopefully in a year it shrinks or at least stops growing and we can move into a monitoring stage. There is still a chance she will loose sight in her other eye making her fully blind. We are hoping that her left eye holds strong and fights for it's life! We also found out today that her last MRI of her spine showed there are no evil tumors hiding from us.
Future Dr. Emma!

Specific prayer requests, please pray that Emma's left eye continues to fight, that she responds as best as she can to the chemo treatments and that healing would come over her little body and kill of that c-word forever and ever!

I have to say, there is just something about Emma. She captivates people. I have been contacted by several people we do not know well to say that Emma just spoke to them and they feel compelled to follow her story. Ever since she was born I have felt that that I joined her life, her mission and I am just along for the ride. This teeny tiny preemie child has a very specific purpose to her life. I can just feel it. I can't wait to see what she does, look out world! Along those lines I felt led to do a inspirational project with Emma since she already inspires so many others. We will be taking formal photos and creating a calender called Cancer Can Be... each month is a positive message. Cancer can be many horrible, terrible things but the face of cancer can be so many wonderful things. We hope to get companies and organizations to endorse the project so we can afford to give it away for free to little girls fighting childhood cancer in time for Christmas. If you are interested in contributing or sponsoring please contact us here or on her Facebook page There will be spaces for company logos and childhood cancer related events like charity walks and I will release more details as they arrive!

Finally a huge thank you to our church community. They have fed us spiritually and literally by filling up our freezer with after chemo meals. More then that they gave generously of their time, talents and finances at our benefit dinner. Our hearts are over flowing with gratitude. We cannot thank you all enough. God Bless you all!

We will put that in the "Win

Wednesday, August 6, 2014

"I Got A Boo Boo On My Chest"

The road to recovery will be a long one but we are determined to get there one day. Someday,
someday, I will look back and say "we did it". Yesterday was just another step in the right direction.

We arrived early for the first MRI of the day. We are watching her tumor behind her eye to see what it did after the surgery, depending on how it responded it could be nicer or more aggressive chemotherapy. We were also checking for more tumors down her spine. Of course the MRI machine decided to sleep in so we waited for about two and a half hours. Thank God for Auntie Amber! She helped keep both Emma and Cora entertained for the wait. While she was in the test we traveled over to the OR to do Emma's check in paperwork so she could seamlessly travel from the MRI to the OR with out coming out of her anesthesia.

The surgery went well with out any complications. The doctor placed her port slightly lower then most doctors so her scar is lower and the tube has more room just in case she gets an infection in the tube and it needs to be replaced. As a mother I am glad that the port is lower so it does not rub on tank top straps, I was worried that she would complain about discomfort with rubbing and it has been over 100 degrees in our town this summer. Also I am glad that her scar is lower so it is easy to cover later if she does not want to explain to people. She did a great job. She came out of surgery much less tramatized then last time. I think it was a combination of it being her second surgery this summer so she knows what to expect, we talked a lot about it and had the chemo port doll for a week, and this was a less invasive surgery. So far she is doing well with her recovery. As I write this she is sitting on the couch watching a movie and applying her boo boo oils to herself. She is doing well but so far my
issue is keeping her perfectly healthy sisters away from her, she just wants to cuddle and be left alone but try telling that to your twin and younger sister! They keep pestering her, poor kid.

We were unable to start chemo yesterday because we do not have the second and third diagnosis opinons from Boston and UCSF yet. We are unwilling to begin treatment until we know exactly what we are dealing with, no matter what it is cancer but we want to know specifically what type. So far UC Irvine and Boston have very conflicting theories which does not sit well with us. Hopefully UCSF can provide some insight.

So that is where we stand, chemo port is in place and this week we will lay low and heal. Next week we will begin chemo and pray that is all goes better then we expect. Thank you for all your love and prayers over the last couple days. We greatly appreciate everything. All the lovely busy activities you gave to the girls, soft blankets, hats, robes, freezer is all amazing!! If I can just make one teeny PSA, we are now in a constant battle of infection. Yesterday our world completely changed. Please, please stay away from us if you are sick or even if you have been around someone who has been sick. Even if you are trying to help us with something, please do not bring any known germs. Also, loved ones who live near us: please do not touch Emma. She is very prone to infections now and any temperature over 101 we have been instructed to bring her straight back to oncology. We can't even go to the ER unless it is a breathing or heart issue because the risk of coming out with something worse is very high. Lastly, please do not touch the rest us with your hands. No shaking hands unless you sanitize right before (and we can see you do it). If you are healthy we fully welcome hugs! Ironically those are much more hygienic! I know it will be hard for all of us but we have to protect Emma. If any of you are wondering why we homeschool all the girls it might make more sense to you now. We will be trying to kindly remind each of you so if we with hold a hand shake or ask you not to touch Emma please do not be offended.

I have a fun project I am working on with Emma, a small hint is it involves pretty dresses and inspiring other childhood cancer girls. More details to come!!