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.
To order Mama Bear, Baby Bear, and Daddy Bear shirts or tanks visit our Facebook, www.facebook.com/throughemmaseye

Wednesday, December 21, 2016

How to Help When you Don't Know How

It's so unfair.

Over and over in my head I hear, "It's so unfair." It is no fair that kids who have not had a chance to live their lives are fighting for their lives. Our children's cancer is not a result of a poor lifestyle choice or exposure to chemicals, no, it is only a result of a sin filled world. Again I say, not fair.

We picked up a sword to fight a new tumor just recently. We have been in and out of Stanford trying to decide on the next course of action on an inoperable brain tumor for a child who has an anaphylaxis response to the typical chemo protocol for that type of cancer. Yesterday was one of these appointments. I came home and put my feet up to check up on our friend family. One of my cancer mom friends who has been at our sides also fighting posted an update, they were also getting routine tests performed.

She relapsed.

No...I kept reading.

Three tumors...

inoperable...

months to live...NOT FAIR.

I knew this news would bring tears. Ugly tears. Before the news really sank in far I decided to ask our community to help me put together a care box for Ari's family. She is heading back to St. Jude on Tuesday for a month long inpatient chemo stay. Friends and community members all started jumping on the bandwagon to shower this family with love. This sweet Mama friend of mine often discusses with me the ins and outs of being a cancer mom. It made me reflect on help and how people think they are helping, how often there are no words so sometimes unthoughtful words escape. I know they mean well but they have no idea what our lives are like and how we feel. Here are my thoughts...

Not Helpful
"God never gives you more than you can handle."
- First off, that is not Biblical at all. Second, if that were true people would not commit suicide or need antidepressants / anxiety meds or die of a broken heart.

Helpful
"I am praying for you."

Most Appreciated
"Can I pray for you right now?"
- A genuine prayer means the world!

Not Helpful
"Why do you need to fundraise MORE?"
- Would you like to see my stack of medical bills? Do I need to explain how my sick kid is a full time job?

Helpful
"What do you need me to do?" or "What do you need?"

Most Appreciated
"Check your email, I sent you a gift card for gas / dinner / coffee."

Not Helpful
"Be strong" or "Hang in there"
- We already feel so much pressure put there by ourselves to be strong for our children.

Helpful
"I admire your strength"

Most Appreciated
"You are not alone, let me help."

Not Helpful
"I know how you feel. My step mother's, second cousin, removed by marriage had skin cancer."
- Unless you are also a cancer mom or fought cancer yourself most Momcologists find this insulting. I just try to tell myself that you are trying to relate to me but honestly it is not helpful.

Helpful
"This must be so hard on you! Do you need to talk? Or maybe a distraction?"

Most Appreciated
"I cannot imagine how you feel, can I pray with you?"

I hope you all know how much your love and kindness has meant to us. I know it is hard to know what to say or how to say it or how to help without making us feel like a charity case. I want you to know that we thank you from the bottom of our hearts for this community. The messages of hope, the help, the Christmas gifts have truly lifted our spirits in this hard time. Your extra help with Ari's box is just mind blowing! This post was meant as a window into our hearts so you can continue to love those Momcologists and be God's instruments of love in our lives. Thank you dear friends, we hope you have a Merry Christmas!

Friday, December 2, 2016

Energy Drain

The last week and a half have been Hell. I have relearned some harsh lessons and I am still reeling from the lack of empathy. I will not go into too much detail but I will say that I decided something this week, if you do not care enough about us to ask us how we are doing or check up on our cancer journey I can no longer expend energy on you. This includes family. That's it. Moving on.

We rushed home from Los Angeles to the Bay Area because Gracie's MRI was moved from Thursday to Tuesday. Emma had been screaming in pain on car rides at waking out of a sound sleep at night so I called her team at Stanford. They all agreed it was very worrisome and put us on an MRI cancellation list to be seen as soon as possible. We got home, I organized a hospital bag, slept for 6 hours then packed Gracie and Cora up in the car and headed to Stanford. Literally as I am walking
Gracie waking up from her MRI
back to Post Op Recovery I get a call that they want Emma in the OR at 6am the next day. A comedy of errors...Emma was 3.5 hours of Bay Area traffic away from me at Katie's house. So we finished up with Gracie and packed up the car to drive home to Emma. I unpacked and repacked the hospital bag, slept for 5 hours, and left at 3am with Emma and Cora to go back to Stanford.

Yesterday I was home and looked around...a mess of half packed and half unpacked on my floor. Laundry. Dishes. Empty fridge. Suddenly I was very mad. The trauma of the week flooded me in one swift motion while I drank my second cup of coffee staring blankly at a dirty sink of dishes. I was mad that people who should care and should ask say nothing. I was mad that I had spent 19 hours out of the last 36 in the car in traffic. I was mad that I do not have a maid or a nanny or a grandma to come help with this mess. I let the anger get the better of me and spent most of my day cleaning and pouting but mostly just hating my life.

The nurse let Emma push the buttons
I think after all that processing and pouting I have finally figured out that I need to be more aware of where I spend my energy. People stepped up in a big way this week, friends sent Starbucks cards and one dropped off dinner. Women I have never met in person helped buy Christmas gifts for the girls and prayed with me and sent love. Those are the people I want to cherish and expend energy on, not the ones who drain.

Last thing I will say is this, if you are reading this and wondering if I am talking about you it is not too late. Pick up the phone, ask to speak to Emma and Gracie and ask them how they are feeling. Send a "get well card". Email us. Anything. To everyone who helped in anyway thank you, from the bottom of my heart, thank you. Kindness and generosity kept me going this week.

Saturday, November 12, 2016

Sarcastic Christmas

Getting suited up
 Two blog posts sit in my "archieve" folder...too raw to share. I have been on a roller coaster of emotions with Emma, highs of watching her fearlessly climb a rock wall and lows of making more doctor appointments near Christmas. If you have ever had it really really hard you will understand how this time of year burns. Carols seem sarcastic, "...have yourself a Merry little Christmas..." and all you hear is sarcasm. "I'll be home for Christmas..." and all you can think is "please God let us be home for Christmas." No one promises that life will be easy but few expect it to be this hard.

Since this summer I have been in crisis mode. Ever since I saw an empty space where my baby bus should be parked I have been battling severe depression. You know it is bad when antidepressants do not touch the darkness inside. My doctor and
No fear!
I tried to play around with different medications and dosages to give me some relief but instead I ended up with debilitating migraines and chest viral infection after viral infection. Too sick to run. I keep putting on a brave face, there was one day we went on a hike with our friends and I threw up in the creepy trail potty then kept going not cluing the kids on the fact that my anxiety was crippling.

I am part of a large international support group for mothers with cancer kids. I asked this week for others to tell me if they feel this way, the empty shell of a once great human being. Yes, yes they understood. Many of them suffer in silence just like I have for months. Only two close friends and my husband know how bad I have truly been lately. Our hospital social worker checks in on us every
few weeks and she asked me how I am doing emotionally since the new tumor. I told her that somehow it caught me off guard. When I really stop to think about it I think in order for me to move on with our lives a year ago I told myself we won and to go live life. Looking back I still think that was the right thing to do...but now I seem to be in some state of shock about the new tumor.

As hard as things are there are positive things to come along side. Although it is heartbreaking that Emma is fighting again that made her eligible to be granted a Christmas wish from a charity at our hospital. If all goes according to plan she will have a beautiful dollhouse come Christmas morning. I am so thankful for charities like these. There is the cliché of "money can't buy happiness" but when you are fighting cancer, money or little gifts of joy certainly help! We cannot buy our way out of brain tumors but we can play with a pretty dollhouse to distract us and we can play "cancer babies" to process our emotions. To the people who say that money cannot buy happiness I want you to look at the face of a cancer fighting baby who just got the one toy they wanted. Pure happiness in the middle of a horrible fight.

So I am going to ask all of you to do something for me. Give directly to a Children's Hospital this holiday. Give gifts of toys and gift cards and money for the hospital to give to the charities that put on parties for us when we are inpatient. Here are some tips for you from Emma and myself,
- New and unopened only. These poor loves are immune compromised and hospitals have a strict rule that the toys need to be new and unopened. Some hospitals will not allow stuffed animals.
- If your kids want it our kids want it. If you are at a loss of what to buy for the kids just ask your kids
2 years ago, MRI where Emma was gifted a toy
or grandkids or nieces and nephews what toys are cool right now. Toys that are always a HUGE hit are lego sets, doll sets, movies, art supplies (no paint), small toys like Shopkins or My Little Ponys, and of course hot toys like Hatchimals and the new NES.
- These donations are tax deductible, just contact your local hospital for their specific rules and receipts.
- Gift cards that are very helpful for cancer families are Starbucks (most Children's Hospitals have a Starbucks in them somewhere), gas cards for traveling, local chain restaurants for times the family is stuck at the hospital and sick of hospital food they can get take out, and this time of year any large chain store like Target or Walmart with a note to buy the child a present they have been wanting. If you do the last one make sure you can order online since some parents are literally stuck at the hospital.
**If you are local to Los Angeles or the Bay Area or the Central Valley you can arrange to meet up with us and we will hand deliver the gifts to Lucille Packard on one of our many visits. Depending on the gift it will go to Oncology or the outpatient clinic (those are MRI kids or check up kids who are not immune compromised so they can have stuffed animals). When we do this we will take pictures!

Last favor to ask, involve your own children. Teach them to love others, be grateful for good health, and give with open hearts. Lastly, share pictures with us to keep our hearts full and happy as we continue to fight.
Emma, inpatient. She was given toys to cheer her up!

Saturday, October 29, 2016

RIP Professor Heidenberg

Do you ever find yourself surrounded by people yet feeling alone? Not the normal alone. That I thoroughly enjoy. I love seeing a movie by myself or sit quietly in a Starbucks sipping my coffee with a good book. That is not the alone I am talking about. I mean the alone where you feel like no one truly understands how hard your life is, how difficult it is just to be you. There are days I wish I could run away and start over, like a kid who dreams of "running away to join the circus". It is a dream that you know will never come true because as a Mom your kids are your life, you cannot just start over.

Ever since I saw that new tumor on the MRI scan I have been struggling in a new way. For the last three years my prayer has been that Emma will get better, that she will beat cancer, that we will move from 3 month monitoring to 6 months to 9 months to 12 months, that life would balance out to some type of new normal. When I saw that tumor I realized that this dream was a pipe dream. We continue to fight. I looked up at our sweet Oncologist with tears in my eyes and asked, "It will never be over, will it?" she looked back at me with tears in her own eyes, "No, no it is not."

You see unlike most cancer kids ours has a genetic mutation that causes her to grow tumors all the time. Her body does not recognize that tumors are bad and stop them on its own like most people. For nearly all NF people this is not a huge deal. It means plastic surgery to remove cosmetic tumors or sometimes invasive surgery to remove tumors that cause issues but they are benign and not a huge deal. Emma is the rare kid that had a one of those tumors go cancerous...and at 2 years old. So already she was set up for a lifetime of cancerous tumors. I naively believed these last three years that if we could remove part of it and hit it with chemo the battle would be over, and it was...for a year.

I called my sister from the parking lot to tell her the news, I felt numb, I remember telling her, "this is my life now". I used to be a University Professor and left the house in heels. I used to travel once or twice a year with my husband. I used to have good credit and no debt. Never again. My life is now "Emma's Mom". It is appointments and tests and medication and MRIs and specialists. It is homeschooling and therapy appointments. It is drowning in medical bills and pay check to pay check. I will never be able to go back to work or own a home or travel again.

I know this sounds like a Pity Party...in many ways it is. I am mourning the loss of the life I once had, the life I thought I would get back. I know now that I have to find a way to be happy in this new life. I need to find a new normal. I need to be grateful that she is still alive and fighting. For right now I am not there yet. I am sad and feeling alone. My friends, although amazing, have no idea what it is like to have a death sentence to the life you fought so hard to build. Only cancer mothers can understand but even then their kids may win their battle and their lives can resume. They can go back to work and their kids get to have a childhood again. Not us.

Before you all comment on how grateful I need to be etc etc let me just say I will get over this, it is a process. I need to be sad and mourn my loss then bury it and move on with this new life I have been dealt. That time will come but it is not now. Right now I am allow to feel the feels.

Monday, October 24, 2016

New Tumor, Denial, and the Fears that Haunt Me.


Sometimes I am absent from blogging because I am too busy, sometimes I am fighting logistical nightmares like technology, and sometimes I have nothing to say just yet. This absence was all three.

I had created a bubble. It was pleasant. It was a bubble where Emma was a cancer survivor and Gracie was only monitored every few months. After I saw her new tumor on the MRI then promptly cried in the arms of my Oncologist I went to my "happy place" - sorry you have reached a Mommy that is not in service, please hang up and try again. We didn't talk about it. Not with Emma, not with each other, not much at all. Then I went to drop Emma off at school and her sweet Principal asked about her new results. I gave her my brave face and rehearsed response I give out readily to people who ask. She dug deeper, then deeper (out of concern for us of course). I heard myself say to her, "We knew three years ago when we found her first cancerous tumor that this is not a fix it game, this is a extend her life as long as possible and make her comfortable." Suddenly I burst into tears. It caught up to me. What I have feared for three years is happening. This is not something I can cure or cut out surgically or give her medicine to maintain. This is something that will haunt us and taunt us. It will give us a year of quiet then come back thrusting us back into chemo and surgery. Then one day it might win...or the treatments will kill us. Now that's depressing.

With NF children doctors follow a protocol. Before jumping into treatment or surgery they want to see the tumor,
1. Grow by 25% from one scan to another
2. Impede functions (eye sight, mobility, etc)
This new tumor is about the size of a pea and deep in the middle of the right side of her brain. It would be very very difficult to remove surgically but it might be possible to biopsy if we have to at some point. Her team is positive it is the same cancer we fought before.

This time Emma is older, more aware. She is asking me about her mortality, if this will kill her, if she will need more surgery, more chemo, more needles. In the spirit of positivity and not projecting too far into the future I just told her that we might have to fight again but we will win and left it at that.

This time I am afraid. I fear that I am too broken to be strong for her. I fear that the treatments will hurt her, make her lose her hair again, and put us back in the ER every week with an unknown fever. I fear the long commute to Stanford in Bay Area traffic. I fear finances will not be available because we are depleted from our last fight. I am frightened that I am alone with out family here locally to help me and that I have over used our friends who do help. I fear the strain this will put on my marriage, we survived one battle but will we survive another?

I feel like when I try to process this news I open up a can of worms. Problems spilling out everywhere. So I just do not think about it. I keep living like we are healthy. Then the hospital calls me to remind me about an appointment I forgot we had (because I wasn't looking) or a sweet friend asks about the girls, or I get a moment alone and suddenly tears are uncontrollable and I feel that I might die from sadness.

I am going to do something I have not done in awhile...I am going to ask for specific help.
- Prayer and lots of it.
- Keep the coffee coming.
- If you can watch the kids (and my kids know you well) please offer to take the twin who is not going to an appt on days we go to Stanford.
- If you live in the Bay Area and you are willing to let us crash at your place if we are too tired to drive home or need to wait out traffic can you please message us your address?
- If we go back on chemo it will be around the holidays so any help getting things set up for Christmas way before that happens is great.
- Lastly understand there are some days I just can't talk about Emma's medical stuff. Just brining it up sends me into anxiety and panic and sadness. It is best to just let me bring it up, then you know for sure I can talk about it.