Tuesday, October 28, 2014

Rainbows Ahead!

It was 3:45am when our alarm went off but it didn't matter because I was already wake. Weary from one nightmare filled night after another I was just waking from yet another dream I care not to finish. We packed up the girls in the van hours before the sun would wake to travel down to Children's Hospital for an MRI. It was our 5th MRI but easily the most important. This test would tell us if the last ten weeks of chemo were saving Emma or doing nothing. My nightmares were from the later. What if it wasn't helping? What if that tumor was still growing? What if these ten weeks of nausea, driving, appointments, ER
trips, temperature readings and fights with the scale were all for nothing? The nightmares were worse then my reality and that is saying something. We arrived at 6am, got checked in, went into testing and waited. After Emma woke up crying from the anesthesia I rocked her like a baby while we both shared some tears.

An hour later we were in the Oncology department waiting for the results. Our Cancer Coordinator, Kim, walked in with a huge smile but she is always so happy and loving so I tried not to get my hope up. I read it but I didn't believe it, the tumors are shrinking! At one point her cancerous tumor around her optic nerve, the one that caused her to go blind, was traveling toward the other eye. It was going
Take that cancer, I get rainbows!
to cause all sorts of issues with her pituitary gland and possibly make her go blind in her other eye. There was no detected space between the tumor and the orbital chasm in our last test, today there was a 1cm space! What does this all mean? It means we are winning! It means we made the right choice, it means this suffering was all for something, it means there are rainbows ahead.

So what does this look like going forward? It will mean that Emma will continue chemo as planned, it is working and saving her life so we will keep it up. Hopefully the tumor continues to shrink and we can remove it entirely at some point. The road ahead will still be filled with trials but right now we have the first sign that we are fighting a battle that we might be able to win. One that I always knew Emma could win but now I have the proof in my hands!

We also have some amazing things coming up very soon. The launch of the Cancer Can Be Project will happen next week! Also, we heard back from Make a Wish and they let Emma pick between Disney World and Hawaii. After taking the weekend to look at videos of both places Emma picked Hawaii! So in January, during Emma's break from chemo, we will all be traveling to Aulani thanks to
What are you going to do next? We are going to Disneyland!
the amazing Make a Wish foundation! Also, once our dear friends at ABC News LA found out that Emma picked Hawaii they decided to gift her their own Disneyland passes so she could do BOTH wishes! This means that instead of sitting in a Neurologist's office being told our daughter has 6 brain tumors like last Christmas we will be playing at Disneyland this Christmas! After all the darkness over the last year we are overwhelmed with gratitude for all these blessings. A huge thank you to Make a Wish and Andrea and her co-workers at ABC News LA, we can't wait to let Emma go be a kid!

Our calendar cover! Go to www.throughemmaseye.weebly.com to order next week or now to sign up a cancer warrior.

Wednesday, October 22, 2014

Family, Zoo and Appointments Too!

Emma with her sisters and cousins
Each trip to LA I am reminded about the importance of family. Not just the people with whom you share a genetic connection or marriage but the greater family you created yourself. The people that were with you through bad hair years and plaid skirts, they stood next to you when you said your wedding vows, held your hand while you birthed your first baby and are always there for you in good times and bad. Cancer made these amazing individuals even more involved in our lives. With out these loved ones we could not stand. This trip was lovely because we saw almost all of our support network.

wagon for three sisters at the zoo
Emma had a fun time playing with her grandparents, we went to the LA Zoo with her Auntie Amber and her cousins, we had playdates with friends and we had our surgical follow up at UC Irvine. We had good news from that appointment. Emma is healed from her surgery in June and cleared to get glasses. She passed her eye exam but because she only sees with one eye it strains toward the end of the day and gives her headaches. She also struggles to see in darkness and is constantly asking to turn lights on. We are hoping that by fixing even just the little correction she needs that it will help with her eye strain. So on the 4th, a year later almost to the day,
Emma with her Grandpa
Any leaf can be a wishing leaf!
we will head back to the original doctor who found our tumor and started our journey. So odd how things go full circle that way sometimes. I just got of the phone with his office filling them in on the last year. It sounds really horrible when I say it all at once. How far we have come, how much further we have to go, it is all so much...almost unbearable. But we stay strong because it is the only choice we have. I am often asked how I cope and my answer is always, "One day at a time, one appointment at a time." I rarely look forward more then just to our next appointment.

This week Emma has a chemo break so we get to decorate for Halloween and play. Next week Emma has an MRI to see if the chemo is helping her tumors.

I am shooting the last picture for the calendar this week and finalizing all the financial end of everything. I am hoping that by the first of November calendars will be available to purchase. If you have a child fighting cancer please go to Emma's website, www.throughemmaseye.weebly.com and fill out the form so we can send you a calendar. I need to get the word out about the calendar so I will be posting photos this week with ordering information for you all to share on social media. Please
Emma and her twin Gracie
help us in finding cancer kids to inspire! Also, if you have a hospital you go to for oncology you can tell me where and who your cancer coordinator is and I will make sure a box of calendars is delivered to your oncology department before the holidays. If you have a business online or brick and mortar and you are willing to sell the calendars please contact me through the blog, Facebook or website.

Please surround us with prayer next week for the MRI, in an ideal world we would see the tumor shrinking. I want to kill that horrible beast forever and ever and let my child live a normal life. Die cancer die! It will be a hard day, time consuming and anxiety filled. Please remember to send us those thoughts and prayers on the 30th.

A huge thank you to the owners of Fitness Factor in Arcadia, Kevin and Maggie! They did a carwash for Emma to help pay some of her medical bills but more importantly they follow Emma's journey and surround us in love. We were so happy we got to stop in to see you all!

Monday, October 13, 2014

Hair and There

Emma had a blast at the beauty salon! She loved all the attention from the ladies there and sat nice and still for her cut. We were very happy to discover that instead of cutting off the curl which is what we expected would occur, her hair cut then curled down and covered her sparse areas! We were able to take her form 6-8" to 2-3" with an end result that looked both normal and adorable. You can only tell that she lost half her hair when it is wet. She is pretty upset that she lost the ablility to have piggy tails and french braids but I traded her those hairstyles for new headbands and hats. We can only hope and pray that this is where it ends with the hair loss but if more falls out we will deal with it in a hip, classy way.

This weekend we traveled to the nearby farm and pumpkin patch for a little fun. All three girls had a wonderful time running through hay mazes, petting goats and picking pumpkins. I love those days when we feel like a normal family and forget about cancer.

This Friday we are heading down to LA for a post surgical follow up, an in depth eye exam and a fitting for glasses. We can only do glasses if Emma still has enough sight to make it worth while. Sadly nerve damage is not something you can correct with spectacles so if Emma loses her sight it is gone forever or until the medical community finds a way to repair the nerve. While we are there it looks like ABC News will do a story on Emma! We are still working out the details but hopefully you will see our cutie pie on the news next week! We also worked in a trip to the LA Zoo with our Auntie and Uncle and brunch with family. It will be busy but it should be fun!

By the end of the week I should have all the Cancer Can Be photoshoots finished and we will move forward with printing! Some of you have asked how you can help, right now the immediate need is help with printing costs. We worked out a deal with Costco where they are giving us a $1 off each calendar and I can pick them up locally to save on shipping costs. If you feel so lead you can send us a Costco gift card that we can use to help pay for the printing. I am still working out how to get accounts set up so you all can buy a calendar with out it getting mixed up in our finances but not so involved that I have to start a nonprofit. It is a lot of red tape! The last thing we want is it to look like to the IRS is that we made a bunch of money and they start investigating us! It is hard working keeping everything above board.

Friday, October 10, 2014

Surrender to the Unknown

I know it is just hair. I am very aware of the fact that hair grows back. But it is not about the hair you see, it is about my reality day to day. On Thursday my kid has cancer, I watch her get poked with needles, I follow her around with an IV and sick bucket, I have a huge bag filled with medicines and
games and a list of things that make no sense unless you have done chemotherapy. (zip lock bags, can anyone guess why? Because you can zip it up after getting sick in the car so the rest of the ride you are not trying to pull over to find a trash can or smelling it). Thursdays are hard, they are draining, they are the worst day of the week. Friday-Wednesday I can pretend Emma is a normal kid. Sure I avoid crowds and have that odd list of things in my diaper bag along with medicine and a list of her doctor info but for the most part we are normal and I try really hard to keep it that way. I can pretend that she is not sick. I can pretend my life and hers did not get a whole lot harder with the C-word thrown in. Normal.

A bald head. Not normal. A constant reminder that she is sick, not normal. Again, these are MY issues. Emma is fine. I deal with these issues on my own, crying in private and only saying positive things about her appearence when she is around. My pretend world is crumbling and I am not sure what to do. So I cried, a lot then brushed off the tears and made Emma her first hair appointment. If
we are going to lose our hair then we are going to be stylish and look as normal as possible. None of this sparse hair or patchy looks, we are going to rock this thing. Today we are cutting her hair in a short, cute style. Maybe a pixie cut. Hopefully her hair remains sparse and we can keep rocking a short do. If not then Daddy will be buzz cut buddies with our girl. She got to pick out a couple hats and headbands to match her stylish outfits too.

While I am here I would like to comment on the Brittany Maynard situation.

Dear Brittany,
I will not preach to you, although we have a faith base I will leave God out of this and instead appeal to logic only.
My daughter has a form of the same brain tumor you are fighting. It is a juvenile, less aggressive form but along the same family. We were given a horrible diagnosis just like you. My three year old was told she had months to live. Possible a year with surgery and chemo treatments. They were wrong. We had the two top specialists revaluate her biopsy tissue and it came back as the juvenile form. My point is, doctors do not always get it right and they "practice" for a reason.
What would I tell my daughter if she was older? If her diagnosis was worse like yours? I would tell her to fight. Why fight a losing battle? Because as a mother, taking care of my sick child has made me a better person, less self involved and more faithful. I have learned to live one day at a time and I am learning not to worry about small things. Cancer puts life into perspective. Brittany, your life may be cut short but it will touch so many people. Your life will make them better in their lives. It will enrich, it will inspire, it will be worth living. Even when you are fully dependant on others your life has meaning. Those people will learn amazing life lessons that they would never learn if you quietly disappear. As a mother of a cancer child I ask to you reconsider what your suicide means to my daughter. What is that message you are sending to her? You are telling her that she is a burden to me and her life means nothing. How sad. The opposite is true, she is my everything and her life is doing amazing things for the world.
Brittany, choose to fight, choose to believe, and surrender to the unknown.
Anya - Emma's Mommy 

Wednesday, October 8, 2014

Persnickety, We Love You!

Sometimes people come into your lives and enrich your journey beyond what you thought possible. Even more special is what Emma and I have experienced in the last few months, teams of people! Companies have come forward to cheer Emma up, provide donations for her Cancer Can Be project and provide prayer. Elves and Angels, Livie & Luca shoes and Persnickety Clothing Company have gone above and beyond for our Cancer warrior.
Well they did it again! I was casually looking through my Facebook newsfeed when I found this blog post, http://www.persnicketyclothing.com/blog/2014/10/hello-emma-she-fights-like-a-girl-proud-of-it-and-so-are-we/
This company is constantly helping childhood cancer families.  The dress that Emma is wearing on
her blog page is the Princess Millie dress. It was designed by a Cancer warrior and the company donates all the sale profits to The Millie's Princess Foundation which helps childhood cancer families with expenses. A couple weeks ago you may have saw us post asking for help with a girl named Phoebe, that was all Persnickety! They see a need and jump in to help. We are proud to wear their clothes and promote their Princess Millie dress!

Tuesday, October 7, 2014

Make a Wish Picture Story

Yesterday our family traveled to Sacramento to have Emma make her wish. We arrived a few hours early to play in the historic down town area. We went out to lunch, saw ships and trains, said hello to ponies pulling carriages, visited a one room school house and walked around all the old buildings. It was a fun break from our everyday routine.

The Make a Wish palace was an interesting experience. They have the child watch a video on how to make a wish then they have four stations. I want to be, I want to meet, I want to have, and I want to go. They tried to get those out of Emma but she was very tired from not taking a nap so we had to help her.

We came up with,
1. I want to be a fashionista and dress up
2. I want to meet Lilo and Stitch
3. I want to have a new fancy bedroom
4. I want to go to Hawaii to meet Lilo and Stitch

They narrow that down to three wishes so they had Emma rank them in order of importance. The wish granters saw a pattern with Emma loving Lilo and Stitch so they transformed the meet wish to include Disneyland.

1. I want to go to Hawaii to meet Lilo and Stitch
2. I want a new fancy bedroom
3. I want to go to Disneyland to meet Lilo and Stitch

We will hear from Make a Wish in about two weeks with which wish they chose to grant and a time frame of when it will happen. Then a week before the wish comes true they hold a party for Emma and give her the itinerary. A huge thank you to Erica and Kim, our Make a Wish volunteers!

Friday, October 3, 2014

But She is Still Smiling

Today took a chemo turn. I had a pumpkin patch play date with two other families planned at a local farm. We were going to take pictures and play and have a fun morning. We got up, had breakfast and got dressed. As I was getting Cora, our youngest dressed Emma asked for a barf bag. This happens every Friday but she has never actually thrown up on a Friday morning. Usually if she makes it through the night we are good for the day. I went to get her one anyway. When I returned to the living room Emma yelled, "Too late." and she was right. Poor baby tossed her cookies. So there goes the playdate. We all got into comfy clothes and put a movie on, now we are on house arrest for fever watch.

See that is the thing about chemo, it is impossible to truly settle into a routine. She is usually sluggish but okay on Fridays, except for the two weeks when she had a virus and we ended up in the ER on Friday. But typically Friday is an okay day, just a slower day. Emma was sad we had to cancel but happy she got a movie day. She is wearing a smile on the couch right now watching Lilo & Stitch. I figure we will cuddle, paint nails and bake today. Hopefully she will be sick just that one time today.

As of yesterday Emma is two months into a 12 month chemo program. Later this month she is getting an MRI to see if the tumor is responding to the treatment. We are also going back to UC Irvine for a post op follow up and to get Emma a specialized eye exam to determine how much sight she has left. As of now Emma is legally blind but has a good amount of sight left in one eye, it is our mission to preserve that sight. To
Emma made me "coffee"
help her she may be fitted for glasses so her good eye does not strain from doing all the work. I think Miss Emma will be so cute in glasses and I am sure she will have fun picking out a pair, it will just be getting her to wear them and not take them off all the time that will be the hard part! I will also have to track down a pair that looks similar but has clear glass for her twin Gracie. I can already predict that Gracie will want to match.

Emma's calendar project is going well. We only have a couple more photo shoots and then we will be ready for printing!

I wanted to write a quick thank you to everyone who has sent us little pick ups lately. Getting fun mail really cheers us all up and we are so very grateful that you continue to remember us and lift us up! As this goes on some of it will become routine and get easier but in many ways it will become harder. It is all of you
at our side that makes it possible to continue. Also a huge thank you to everyone who went gold with us for the month of September. Thank you so much, we love you!!