Friday, December 22, 2017

My Emotional Wall

It all started Christmas Eve four years ago. The day our lives changed forever. Over these years I have built a solid wall that protects me emotionally. You see, I am that person. The one who cries at a song or a movie or a video of a soldier coming home. I am the one who cries with you at the funeral and sits next to your broken heart mirroring the action in my own heart. I have always felt deeply. The day that I had to leave Emma in the OR for brain surgery I knew my time with open emotional spending had come to an end. Although it is a blessing to wear your heart openly you cannot go into war without armour. So I built a wall and inside my fortress I could protect myself...until the wall springs a leak.
Our car was PACKED!

Yesterday we were at Stanford for appointments and our annual toy donation. In the days leading up to that day I knew that bad news was coming from Jenna about Ari. She is rarely silent and in our world I know that silence after a scan means you had bad news and you are either processing or trying to find the next step. We don't share right away because that begins the flood of text messages and Facebook Messenger alerts with well meaning people asking too many questions. Questions you cannot answer, answers you do not want to give. Sometimes we do not want to talk. So when Jenna stopped talking I started building. Up goes the wall higher and higher preparing for battle.

We dropped off the toys with a team of amazing social workers. Their smiles and gasps of awe in the amount of toys was heartwarming. It was our largest donation in these three years we have made it our mission to bring cheer to our fellow warriors. I left the hospital with
Our largest donation to date!
an empty car and prepared for the long hours of Bay Area traffic. About four hours later I was finally home and poured myself a glass of wine. Since I rarely drink I have no tolerance. When the first tear fell I realized that the wine broke down my wall as I was surrounded by a flood of emotions. Suddenly I was sobbing and could not stop.

We walk hand in hand with death. Emma and I have sent several balloons into heaven to our friends who left before us. We have books on hand to read to her about death, we have coping mechanisms, we have greiving down to a science. But what do you do when it hits too close to home? When it is someone you have talked to and shared deep thoughts and feelings and opened up to about the darkest moments? So much of cancer is dumb luck. You lost the genetic lottery. Out of millions of people cancer picked you and your family. No amount of clean eating or prayer could have saved you, it was just dumb luck. Sometimes I think I must be the most unlucky person ever. There is another level to our grief, on the surface we grieve the unfairness and horror and loss that surrounds the early death of a child and friend. Under the surface we grieve that it could have been us. We know that it could have easily been our turn and that someday it might be us. That scares the shit out of me.

Many of you have turned to me asking what to do, what to say. You think I have the answers. I don't. I have never watched my child die slowly from cancer. I am lost too. I can only tell you what I know from those who have gone before me; give the family space and offer solid support (examples are meals, gas cards, and monetary donations) do not bother them with questions but instead ask people who know them for an address and just deliver it. Make sure meals are able to be frozen. Do not ask questions, do not bring God into it (offering prayer is fine), do not tell them what you think will save them (Cancer moms are the most fierce researching team you will ever encounter), and do not under any circumstances ever, ever, EVER tell them to pull the plug. Jenna said yesterday that a friend who lost her child to the same cancer told her not to mourn her while she was still alive. Let's let Ari live and do not treat her like she is already gone.

Jenna if you read this please know we will do anything to help that is within our capacity.

For now my plan is to get myself together so I can be strong for Jenna and offer support. If I hear of any specific needs I will pass them along. Thank you so much to everyone who has helped us help Ari, you truly are the best community of Emma supporters! We love you all.

Saturday, November 25, 2017

Is that ELLEN?

Thanksgivng day

Those should be a happy time but for us Christmas brings up memories of Emma's first MRI and diagnosis. Even if I am happy, even if we are home and not inpatient I struggle emotionally.

Before we left for Thanksgiving Brad and I took our youngest out for a muffin while her sisters went to school and the packing of the car commenced (5 people and luggage in a tiny hatchback is a little bit like a real life game of Tetrus). My phone buzzed mid coffee sip and I see that Through Emma's Eye has a message on Facebook. The message had a link to Ellen Nation and a note that we were featured on the page. I honestly did not know what to make of it, part of me became very excited about meeting Ellen since I have watched her on TV since I was a kid and she was still in the closet. The other part of me asked, Is that Ellen? The real Ellen, not a fan page or a fake page but the real Ellen?

Over the last couple days I have watched votes roll in and I get more and more excited at the idea that Emma might get to meet Ellen. In the background I still hear the voice in my head reminding me that things like this do not really happen to us. Although we have experienced an amazing Make a Wish trip to Aulani and an outpouring of love from all of you as fans we are not the type of family to "go viral" or gain the attention of a celebrity as awesome as Ellen. No, we are more the type of family who has the car stolen out of the driveway leaving even the local news reporters shaking their heads at how stuff like that could happen to a cancer fighting family. No, we are "that" family. The family that barely makes all the ducks stay in a row and gains the respect of onlookers that we have not going completely bonkers by now with all the craziness.

I jokingly said to my best friend that I would pee my pants if I got to meet Ellen, it would be amazing and I hope it happens (the meeting, not the public embarrassment) because if cancer has taught me anything it is to always have hope. However, I know it is likely that life will continue as normal and that means the holidays are here and the holidays are hard for me.

At Christmas I grieve the past and the Christmas Eve that changed my life forever so each Christmas Emma and I give back to the hospital to distract my broken heart. The first year we brought just presents from our girls as donations to the children's hosptial. The next year we asked friends and family to join us, the next year we reached out to the community and rolled up with several wagons full of toys making the Social Workers at Lucille Packard drop their jaws in awe. This year we plan to go BIG. Emma and I dropped off donations boxes at Central Valley Play & Grow off Roseburg in Modesto. We got their school to coordinate with us and placed a donation box in each classroom. We had an amazing local business reach out to us and ask if they could gather toys as well. My goal this year is to have so many blessings that it cannot fit in my car on one trip. I want to flood that hospital and see these amazing fighters smile. I want to see that sigh of relief in the fellow Momcologist's face that her baby is happy for even one minute. I selfishly want to mend my own broken heart with helping others.

How can you help? If you are local then you can pop by one of the two locations I mentioned and drop off your toys. If you are not local you can email us for an address then online shop for toys and have them mailed to us to deliver (great idea for those of you who Cyber Monday shop). Lastly you can donate to our Paypal and Emma and I will go on a shopping trip to buy things that the hospital specifically asked for (lego sets, crayloa art supplies, and playdough) then we will share pictures of us shopping for you on her page. I will post all the information below along with a flyer you can download and share to get the word out.

Email us at
Paypal donate to and put "toy drive" in the comments

Thursday, May 11, 2017

Cancer Will Break Your Heart

Cancer Will Break Your Heart...literally.

When Emma was diagnosed I was a healthy person. I had no need for a doctor's office and I was rarely sick. Now 3.5 years later I am dealing with a heart condition. You see, cancer literally broke my heart. All these years of anxiety and stress have put a toll on my heart and I have developed a condition where my heart quite simply stops beating.

Thump thump...thump thump---------------THUMP

It is scary and it hurts sometimes and I am fearful that if I cannot limit anxiety it will become an even larger problem. It is weird to think my heart stops beating several times a day, that alone gives me anxiety, which makes my heart worse, so I get more anxiety...see the problem?

Recently in a twin support group I am on a mother discovered one of her young twins has a rare and aggressive cancer. Watching her go through the process of diagnosis, treatment options, port surgery, trying to line up doc appointments so you only have to do one long trip, and childcare for her other kids has put me in a state of reflection. All the times I was given life expectancy, drug reactions, long term side effect risks came rushing back to me.

About two weeks ago I was called dramatic. Someone literally no longer wanted to be my friend because my life is too dramatic. That is not rare. Typically friends just disappear in cancer. They cannot handle seeing sick babies or they were too self centered before cancer so when I stopped reaching out they just faded into the background. In these years of fighting friends have come and friends have gone. Now I watch one of my friends start to lose people she loves. For some reason watching it happen to someone else it hurts just as much as when it happened to me. I tell her the same thing I told myself; that not everyone is strong, that people leave because they can (and we cannot), that some people are just jerks but inside my inner b-word is telling them not to let the door hit them on the way out.

Why? Because it is people like us that will get your back. We are the ones who understand the value of a hot meal when you are too sick to cook. We are the ones who know that a random and unexpected gas card in the mail can bring a traveling medical family to tears. We are the ones who offer to take your healthy children while you go to the doctor's office or recover from surgery. We hope you never experience those trials but when or if you do you will be sad you lost a friend like us. Your loss. To my new Momcologist friend, hear me when I say it is THEIR loss. Hold your head high.

So here is my PSA for all of you healthy or stable people out there. If you cannot handle our "drama" then just leave. If you are brave enough to tell us in a nice card that it is too hard to watch but you wish the best that helps. What not to do is tell that person to their face that they are too dramatic. At first it hurts and then we get pissed because we did not choose this life.

If you can stick it out then just a simple text on a random day to let us know you care or a well timed card like planning for it to come on the day after chemo. Bring them a meal, send a gas card, offer to watch her healthy kids. At the end of the day she is the one you want in your circle. Have her back now and she will have your back later. After all, are we not one large collective beating heart of humanity? Love on her or let her go.

As for my heart, right now it is broken but I have faith it with time it will heal. It just means it is MY time. Time to focus on Mommy. Now that the girls are both stable I have put them in an amazing school, I went back to work, and I have lined up self care like going to the gym. My heart will knit itself back together and let go of the horror and pain and anxiety of the last several years but it will happen slowly. In the meantime listen to this amazing song, it sums up what cancer families feel and helps give you a glimpse into our thoughts...sometimes we need to just crawl into the fetal position and cry. You Don't Know

Saturday, January 7, 2017

Love Is An Open Door

Emma's new medication is a long journey, I thought it was time to fill you all in. Emma has debilitating PTSD and ADHD as well as ODD (yes that is many letters). We have been experimenting with several medications since her chemo days about 18 months ago. In that time we have tried four different medications to help with her anxiety, night time panic attacks, and focusing in school. Each had it's side effect that was less than desirable; some caused migraines, most made her even more hyper, and my all time favorite was one that made her talk so fast and for so long (5 hours nonstop) that she hyperventilated.

I packed her up to go back to her doctor to discuss what else we could try after a horrible PTSD meltdown in Target's Pharmacy about her medications and he mentioned that the only thing left to try was an adult antidepressant. I was less than impressed. This poor child has been through enough and I was not about to subject her to addictive adult strength anti-depressants. I expressed my concerns and he had them as well so he gave me a physician's recommendation for CBD. He told me he has only suggested it a handful of times to his patients but it would be a better alternative for Emma.

I began to research children's CBD oils and came across Jayden's Journey. I had heard of them before through documentaries and word of mouth through Stanford, our chiropractor, and documentary films on the cancer industry. I walked in and immediately I had someone helping me figure out how to help Emma. It was about two days before I saw a difference; she was calm, she was kind, she was compliant, when it normally took her 3-4 hours to fall asleep at night now she was out happily in 10 minutes, she was not waking in terror at night, and teaching her in homeschool was more pleasant. I saw a huge difference, a light switch reaction. Suddenly I was kicking myself for fighting this answer for three years. I knew it might work, other cancer kids were successful, but somehow I had to exhaust every single mainstream option before trying this controversial treatment.

Why am I sharing now? Because I want to save other families from struggling as I did. I wish I had just been open minded years back. Now I know better, I know that this works and I know that Emma is happier than I have seen her in a long time. This week we ran out of our supply while trying to fundraise to buy more of the $200 a month oil. Overnight she reverted back to "Before Emma". She was weepy and angry and waking up at night screaming in pain. Again I felt the Mom Guilt. It was my fault she ran out. However, I did learn through default that this is the answer because stopping just for one day she flipped the switch again.

I know I am asking for help to keep her on this medication. I realize that some people feel strongly against any CBD etc. If that is you please know that I am not asking for you to financially support this new medication. If you are morally against CBD that is your stance and I respect it. I am not, however, opening this up for debate. Emma has been through Hell and this helps her, she is happy and kind and has a chance at some type of normalcy on this treatment. Any negativity will not be answered, we respect you and we hope you respect us in return. If you are interested in learning more I highly suggest looking up Jayden's Juice. It is a great product.

Thank you again for caring so deeply for Emma and our family.
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