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 clich√© 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.

Sunday, September 11, 2016

Princess Gracie in Disneyland

Our Princess Gracie just got back from her Make a Wish trip. She had a blast. The first day at the
resort we decided to let her have Mommy and Daddy to herself so Emma went to her Grandparent's home for a day of Grammy pampering. We hit up the pool and the lego store and just let her be a kid. The next day we saw the new Anna and Elsa Frozen show, oh my goodness, if you have not seen it GO! It was amazing and all three girls were in awe the whole time. We did lunch with the princesses at Ariel's Grotto then Gracie and Mommy stayed at the park alone to let Gracie have full control of her day (Emma likes to tell her what to do). We hit up all the CA Adventure rides she wanted to go on and to my surprise she wanted to go on The Tower of Terror! Of course after the first drop she looked at me and said, "all done, too scary" but at that point we were in it to win it! She is such a brave girl!

My all time favorite day was Wednesday. We all went to both parks together and thanks to the Genie pass we were able to hit all the rides and shows they wanted to see in that one day. Highlights from that day were...
- Gracie driving at Autotopia, every time she hit the rails Cora would giggle and yell out, "Gracie, drive better!". We laughed the whole ride!
- Dumbo ride. We split up into two Dumbos and the girls loved flying! I loved looking back and seeing Daddy with giggly twins!
- Breakfast at Surf's Up at the Paradise Pier. The girls were so so so happy to see Stitch there!

The last day Gracie got to get all dolled up at the Bippity Boppity Boutique. She transformed into Princess Sofia and we walked around meeting all the princesses.

A huge thank you to Tricia Litts at Make a Wish for tying up loose ends for us and getting us home when we decided flying was going to be too stressful. We appreciate your quick responses and loving attitude!

Now that we are home we are hit with a harsh reality. Emma goes under the knife on Tuesday as well as an MRI. Hopefully later this week we will have the results and know if she is having a cancer relapse. If cancer is back we will discuss oral chemo (we would go to Stanford every 2 weeks) or a trial that she might qualify to try. Of course my phone broke on our first day at Disney, you cannot hear me when I talk. So if you need to get ahold of us text or call Daddy's phone, I am trying to replace my phone as quickly as possible. Please say a prayer for us, I have that horrible mother's intuition that this is the beginning of another battle.

Sunday, August 28, 2016

The Collective Beating Heart of Humanity

Helping Hearts,

I am not a "everything happens for a reason" person...I can be better described as "shit happens" and "keep calm and trust God". In this situation I felt no different. It did not feel like there was some epic, cosmic reason that our car was stolen and along with it nearly all of our nice possessions. It felt more like a "shit happens" type of situation. Who knows why it happened to us but it happened.
Matilda Jane sent us a box of pretty!

I've changed my mind.

In this situation I think God spun it around so it came back to bless us. These last three weeks have been extremely stressful. I have sobbed like a small child, yelled, lost my temper, and swallowed my pride. It was hard, but it was also healing. Many things happened in these three weeks that made me realize that there is a collective beating heart of humanity. That for the most part the world is good, car thieves are in the minority. Although I will never understand what possessed a man  to steal an aqua blue baby bus with over 100k miles on it, a car that had tons of childhood cancer awareness and info in it so clearly it was needed, a car that was obviously used heavily and well maintained...why that car? Why not one of the nicer cars on our street? I will never know why but I do know this,

Tula sent a "Beacon" carrier
- I had to surrender to the unknown. There many unknowns in this car situation. We were not sure we could buy another car, even with the insurance pay off. We knew we could never afford to replace all the items in the car, many of which were needed for hospital trips. All I knew for sure is I had to surrender.

- I had to accept help. Borrowed seats, offers to replace stolen items, purchasing a car for a price we could afford, allowing news crews to move our tight schedule around so we could tell our story and receive help. I am great at helping, not so good at accepting help. Nothing like a swift kick in the rear end to push you into having no choice but to accept help!

- I had to release the idea that I could somehow pay back everyone who helped. If I get sick and you bring me a meal then you get sick I will bring you a meal. I try to keep track of people who extend themselves for us and make sure to be there for them when their lives crumble. It is part of being a good friend, it is polite, but also it makes me uncomfortable to always accept help but not give back. This situation taught me that sometimes you cannot fully payback people who go out of their way to
Walmart replaced some stolen items
help you. The people who helped us with the car, the friends who drove that car up from LA for us on their day off, the companies who replaced their item we had purchased in the past that was stolen, the corporations that just generously gave of items, the friends who sent gifts to make us smile, and the people who called to check up on us (from the local police to our hospital social worker to friends).

I hate the cliché of "everything happens for a reason", even after this situation I still hate it. I will offer an alternative,

In each situation there is a life lesson you are meant to learn.

So here is my life lesson learned; there is a collective beating heart of humanity. When your heart breaks in life others stop to grieve with you and offer to repair, when your heart rejoices humanity gathers to celebrate with you. People from all over the country rallied to help us, we are all human, our hearts beat as one.

New to us wheels!
So here is my early morning, coffee sponsored way of saying thank you. Thank you for helping us. Thank you for praying for us. Thank you for crying with us. Thank you for reaching out to companies to tell our story, thank you for showing up with news crews to spread the word that we needed help, thank you for giving of your time and resources and finances. We are so grateful. Although I know we can never fully repay all of you we humbly add our heartbeat to yours. If you need a friend we are here.


Love to all of you,
The Heidenbergs

Wednesday, August 10, 2016

Secret Option 3?

This week I have learned that insurance companies are in a constant internal conflict with their mission and their bottom line. We buy insurance and pay monthly with the promise that if the house burns down or your spouse dies unexpectedly or your car is stolen out of your driveway that they will come to the rescue. Not so. I have paid my own car insurance for half my life, each month I cut a check to a promise that they will have my back if Hell comes knocking. This week I have decided that insurance is also Hell.

I told ABC News that I am not sure how this ends but in our situation things only get worse and not better. That has always been the case. Charities lend a hand and a fundraiser might help but at the end of the day each MRI adds to a huge bill we cannot pay screwing up our debt to income ratio making
it impossible to buy a home or get a car loan. This was not a huge issue over the last few years, we have a lovely home we rent from sweet friends which suits our purposes and I took out my car loan before Emma was ill so I was "grandfathered" into it. Then my car is stolen.

See here is the issue, if the insurance decides to cut a check for what they believe is the value of the car they will chop it up before it gets to me. They take a piece for themselves for the deductible (because apparently paying every month for 15 years did not give them enough of my money) then what I owe still on my car loan comes out and the rest goes to us. I did the math...it will not be enough unless for some reason they assess my van to be of great value (I will not hold my breath). So I will be sitting here with a check that is not enough to buy another car that I would feel safe putting my kids inside and driving three hours to Stanford in Bay Area traffic.

Let's pretend the van is recovered by police. We all know that insurance will pay the bare minimum on repairs to the car. I can tell you now that I will never feel safe in that car ever again. What if it was used in a drug deal and now people recognize it as a dealer van? What if there is stuff hidden in the car from the thief that could hurt my children? What if, what if, what if...my Mommy brain goes wild. These scenarios have been keeping me awake at night.

Option 1 is not enough money to buy another car, option 2 is a recovered van that makes my anxiety go insane.

Like I said, pretty sure this doesn't end well.

After ABC News10 aired our story we had a few new donations to our Go Fund Me, that was such a blessing and those funds are being put aside to go toward a car. A huge heartfelt thank you to every donation, every little bit makes us feel like we are not in this alone. My prayer is for secret option 3, a miracle. Pray for that please.

If you missed our news segment you can see it here, ABC Story, our GoFundMe is just the one we have used for the last three years, when they cut us a check at the end of the month I will put it aside for the car, GoFundMe. If any of you are in the Bay Area or Central Valley my sweet friend is putting on a garage sale for us. Oddly enough we have been planning that for a month! It was supposed to be just extra funds to make things easier for travel to appointments and living life but now it is car fund.
A huge thank you to everyone who let us borrow car seats, is working hard to replace stolen items in the car, sending us prayer, and working hard on these fundraisers I mentioned. Right now the car seat situation is covered and it looks like the stroller might be covered as well. I will know more today. There were other items in the car not replaced; overnight bags filled with clothes and shoes, new backpacks for school, Hope's puppy kennel, Hope's puppy bed for the car, Emma's iPod (I gave her my iPod to prevent having to listen to "Let it Go" 100 times on our hospital travels!), and some of our favorite toys.
 
If you see us around town try not to talk about everything that we lost unless Emma brings it up, there were tons of tears yesterday as she recalled things that were in the car. It was heartbreaking to explain to a child so young what theft means and why bad people take things that do not belong to them. If she brings it up by all means let her talk.
 
Thank you again for all the help and support, we are so thankful!

Sunday, August 7, 2016

"Mommy, Where's Your Car?"

It was a normal Sunday morning, I was preparing breakfast and the kids were running around making requests for pancakes and berries while I sleepily made coffee.

"Mommy, where's your car?" Emma asked.
"In the driveway honey."
"It's not there."
"Yes it is."
"No...where's your car Mommy?"

I walked out from the kitchen to our living room and sure enough, a blank driveway. No way, my car was stolen!? Brad and I looked at each other in disbelief. "My car was stolen?" I knew I had seen it at 10pm the night before when I was preparing our bread dough. Now it is gone. Phone calls, police reports, insurance reports...now I sit staring at my empty driveway.

My life was in that car. Three expensive car seats, my running stroller, Hope's puppy kennel, Emma's Kindle Fire with all her downloaded Disney movies for hospital trips, my iPod...oh no my iPod! It may have been old but it was mine! I feel so violated, I feel sad, I feel like a bad country song.

In the span of one month Emma's tumors have enhanced, I was diagnosed with PTSD, I had to fire a doctor for the first time ever, Brad had his own cancer scare and a minor surgery to remove it, and now my car has been stolen along with so many of our belongings. I am beginning to take this personally.

I keep thinking we have hit rock bottom, then something else happens. At this point I am not sure it will ever get better. What to know some irony in all of this? I was supposed to teach Sunday School today, the topic I was assigned was Job. Umm ya, can't make this stuff up.

So today I will take a lesson from Job, I will continue to trust in God and that He has some sort of master plan for us. Although I have no idea what that entails (and I hope it has no more tragedy) I will trust that He cries with us.

For those of you who have asked about what happens now, I am not completely sure. Our insurance dept that handles stolen cars is only open Monday - Friday. I will call first thing tomorrow and figure out where to go from here. My hope is in the end this will somehow become a blessing for us. After all, we did hit rock bottom today...right?

Saturday, July 30, 2016

The Week Hope Came Home

It was a hot Tuesday morning, teeny puppy yelps echoed through the orchard. Her litter was in a large running area, I wondered silently to myself if I would recognize her or if the sea of fluffy amber hair would camouflage our baby. Puppies all ran up to us singing happily and begging for cuddles. Then I saw her waiting patiently in the back. I saw her and she saw me. She came forward and I picked her up. Her tail wagged with joy as she nuzzled my neck. I put her collar on her and handed to Emma. They locked eyes and instantly there was love. She was always meant to be part of our family. We knew it and she knew it. Family.


Ever since Tuesday we have we have been lost in puppy cuddles, sweet awkward play around the house, and documenting all the funny ways she falls asleep. She is not even trained yet but she is already contributing so much. She has kept Emma calm at night so she falls asleep sooner, she stays happy in her room waiting for the rest of the house to wake up while she plays with her puppy, and she has not had a tantrum out in public with Hope. If anyone ever had any doubts about the power of a dog and human relationship they should see Emma's before and after.

In a couple weeks Hope will be old enough to begin puppy training. After those 6 weeks of classes she will move on to more intense training. I plan to be there with Emma in tow so Hope learns she answers to an Alpha and a Beta in this family. She is already learning so fast so I have lofty dreams of her completing her training to be an official Seeing Eye Dog!

To everyone who helped us gather funds to bring her home we are so very thankful! We still need to raise as we go to pay for her training but getting her home was by far the biggest financial hurdle. Now we have just small hurdles to jump financially but more responsibility placed on us!

Here are some more pictures of the girls.

Sunday, July 24, 2016

In Pieces

I have been lacking in the blogging department lately. I fell apart. You know the people who stay calm in an emergency? The people that can give CPR and hold someone together while help arrives. The person that has a clear head in a car accident. The person that remembers to grab the important papers when the house is about to burn down? That's me. I stay calm during the fight. When the dust settles I fall apart. This fight has been so long that I have broken down a few times along the way. Things would get dark from shear exhaustion and I would dig myself back out and press on. I was doing better. I was running, I was healthy, I was happy for the first time in a long time.

Then the call came. The Oncologist said she's not worried...yet. I stood and listened to her telling me what to watch for, "side weakness, slurring, vomiting, headaches, night terrors..." Suddenly I was no longer "fit and healthy Anya" I was broken in pieces, so many pieces. She told me again not to worry as I said my good byes but all I could hear were the words spoken by our first doctor three years ago telling me the same thing. "Don't worry, it's rare, odds are she will be fine". Then growth, surgery, cancer, more surgery, chemo...it all started this way.

My mind knew that the odds are in her favor but my heart was done being disappointed. Suddenly I found myself having nightmares, flash backs, panic attacks, hopelessness, helplessness, paranoia. I am on a support group for "Momcologists" and a mother shared an info graphic on the difference between depression and PTSD. Out of 20 symptoms I had 18. I called my doctor.

Now that I have this new diagnosis and a change in medication I am starting to claw my way out of this dark hole and back into normalcy. Part of my constant worry is that I feel like I am not strong enough to do this all again. I am too broken, too defeated, too poor, too emotionally bankrupt.

I am trying to keep my eyes upward and maintain a positive outlook. I decided not to tell Emma
about her tumor enhancement and let her have a nice summer. Her service puppy, Hope, comes home on Tuesday and I know that will help both of us stay happy and light. We also have the start of a new school year and Gracie's Make a Wish in September.

As we finish out the summer we can use a lot of prayer. Emma's next scan is in September after Make a Wish. We also need help fundraising for Hope's training expenses. It will be a lengthy process.

I know this is not the most uplifting update but I have always tried to be honest with everyone who watches Emma's story. This is childhood cancer. Momcologists are all depressed and have PTSD and live paycheck to paycheck hoping for brighter times. We are all tired. I encourage you if you know a local family fighting cancer to bring them flowers or a meal or a gift card. Show them that you are still watching and praying and caring. So many of us stop hearing from people after a few months into the fight. It is too hard to fight it alone. Love them, love them all.

Monday, June 13, 2016

Momcologists: I Will Be Their Voice

How are you doing?

No one wants to hear a real answer.

Not unless she is also a Momcologist (cancer mom). She doesn't want to hear the real feelings, what is really going on, the bills you can't pay, your fears...you just keep those to yourself.

I have a lot of Momcologist friends. Once we were thrust into this world I found myself having little in common with my current group of friends. Some disappeared, some tried to help, some did not know what to say or do, only a couple stepped up in a huge way. I drifted away from most relationships and discovered solstice and comfort in the arms of other cancer moms. Over the last three years I have asked, "how are you doing?" to them and knowing I want a real answer I have heard some horrible stories. I decided it was high time to put an end to all this silence. These are stories and things that have happened to my community I have kept it all anonymous,

- Many of us end our marriages. Some stay together for the sake of the kids but lost each other somewhere in this mess. Some drifted to other arms, some fell into a bottle and never came out, and some just drifted. I hate to say that the statistic of divorce or separation among my cancer friend families is about 60%.

- We can't pay our bills. Lets just put aside the hundreds of thousands in medical debt and focus on just normal bills. We can't pay them. Why? Because when our kids got sick someone had to be a full time parent / care taker. 100% of the families I know this was the mother. We have to stay home full time so we can spend endless hours on the phone scheduling appointments, drive our kids for hours and hours to specialists that are too far from home, live in the hospital with our child so a guardian can watch their vitals and pray, homeschool our kids since they miss so much school from appointments and are immune compromised...so so so many reasons. My point is we all fell to a single income. Anyone will tell you it is really hard to raise kids on a single income, then add all the extra travel expenses and co-pays for visits or medicine and you have a recipe for disaster. Statistically 1 in 11 of us will file bankruptcy, I think that's is low because to file costs money...oh the irony!

- We are not okay. We spend hours crying alone. We put on a brave face in front of our children as the doctors describe horror then we retreat to the bathroom to throw up and scream. We lost weight, we gained weight, we developed health conditions from stress, we are on antidepressants, and anxiety medication. Many of us have had suicidal thoughts.

- We try to prepare for the worst and imagine our child's funeral. What would she wear? Would people come? What would I say in the eulogy?

- It is never over. Even if our child survives we live in constant fear of a relapse. Every fever, every bump, every rash is cause for concern. We panic at every MRI, lumbar puncture, and appointment. Life never goes back to normal. Ever.

- We are highly insulted that our children only get 4% of cancer research funding but even more enraged that no one cares.

- After 3 months, 6 months, a year...people stop caring, praying, and offering help. So many fundraisers go unattended. People look the other way. Friends and family judge you for not working.

- We lose our homes and cars in repos and foreclosures. Banks do not care if your kid has cancer.

- Some of us do not have help. Family doesn't live with us, babysitters cannot be afforded, grandparents do not go to chemo with us. We do it all alone. Sometimes pulling over in a corn field on the way home to have a panic attack.

I wanted to share this with all of you because it hurts to hear these stories from brave women that I love dearly. I will be their voice, I will speak. Why? Because I want you to pay attention the next time you see a friend who has a cancer kid. Ask her how she is doing, offer to babysit non cancer kids to give her a break, offer to pay a utility bill, stop her and pray for her right then and there, show up to her home with a pound of coffee and a bottle of wine, demand more funding for our kids, donate stuff to children's hospitals for the mothers (like leggings, coffee cards, reusable water bottles, books for her to read bed side, lotion, make up, adult coloring books...) but most of all I hope this opens your eyes to our world. Although I love these women I pray you never join us.

Thursday, June 2, 2016

the day Emma met Hope

Today we took a trip out to meet puppy Hope. She was a teeny little one week old ball of love. Her eyes were still closed. Sarah, the breeder, placed Hope in Emma's hands and we took this picture. As Auntie Andrea said, in that moment you can actually see Emma holding her future. Freedom, peace, love. All of that in her tiny little hands. Hope is so much more than a puppy. She represents a new life for Emma. Help navigating public places, comfort at night when she has her night terrors, a constant companion who will provide her friendship and love.

It means so much to her but mostly it means a lot to ME. For these last few years I have watched Emma suffer greatly. I have placed her limp body in the arms of surgeons, I have held her angry body as she goes blind slowly and does not understand what is happening, I drove her all over our state seeking the best care possible and 2nd / 3rd/ 4th opinions. So much of this has been out of my control. I could not perform the operation myself to make sure it was done right. I could not kill the tumor. I could not stop her nightmares. Most cancer moms or "Momcologists" will tell you that we feel helpless. We wish we could do more. Well now I can. I have a positive outlet for my energy. I will train this dog and it will help Emma. For once I have a real, tangible thing I can do that will have a lasting impact on my daughter.

Hope is named for what she is, she is hope to us. She represents all the hope I have for Emma in being a peaceful, mobile, and self sufficient adult. Thank you from the bottom of my heart for helping us provide this for Emma. It means so much!

Ways you can help:
- Prayer, this will take a ton of time and energy!
- Connect us with trainers
- Fundraise with us! We have a LuLaRoe party next weekend, info on our other blog post.
- Pass down dog / puppy things. If anyone has gently used doggy things we will happily take them for Hope!

Sunday, May 29, 2016

Hope for Emma

Many of you have followed us for nearly two years, you have prayed with us, cried for us, and helped us in so many ways. We love you all so much! For those of you who are new here is a quick synapsis of Emma's story,

Emma was diagnosed with Neurofibromatosis at the young age of 2, it made her go blind about six months later. Around the same time as she went blind she was diagnosed with cancer. She is now a cancer survivor at age 5 but for her it will be a lifetime battle. We go back to Stanford every three months for MRI scans and to meet with a team of 5 specialists. With NF1 once you have a tumor go bad on you it begins a war of keeping other pre-tumors from doing the same.

She is experiencing a whole host of PSTD like symptoms and even the Stanford child Psychiatrist is unable to give her a specific diagnosis or medication because she has "too many risk factors." We have already tried all the natural ideas from herbs to essential oils to special needs help like sound machines.

We would like to get her a Therapy Dog to help keep her calm at night and in public / hospital which seem to be our two biggest issues. Since she is blind we will work toward a Guide Dog for the Blind after we obtain Therapy Dog status. We believe growing up with this type of assistance will help Emma to assimilate naturally into the adult world and give her the most chance at accessibility. Sadly other do not see things the same way and Emma is too young to apply for a Guide Dog. We looked into a Therapy Dog instead and had sticker shock! Price tags of $15k-40k and 2-3 year wait lists.


Cute LuLaRoe clothes
The best thing for all of us is to take on the heavy lifting ourselves. We already have a breeder who is letting us have pick of the litter and meets the strict breeding requirements for Guide Dogs. I will do all the training with the help of local dog trainers who will come to our home to work with us. 

From my research I am expecting the puppy and training to cost a minimum of $5k. Our friend Kaleigh Clark set up a LuLaRoe fundraiser, the organization will match what we can raise so it will greatly help us while providing cute clothes for you and your little girls! Here is the link to the event. If it does not work for you just shoot me an email at throughemmaseye@gmail.com and I can add
Kaleigh and her cutie, Jenny.
you using your email. https://www.facebook.com/events/1189661174399590/ You can also visit Kaleigh's page, LuLaRoe Kaleigh Clark Facebook. For those of you in the Central Valley we will be having a pop up boutique party at our home on June 11th in the afternoon.


I have had a couple of you amazing Emma warriors ask for a Go Fund Me link, I decided not to use them this time around because they take a significant cut of your contributions and I have a feeling it will be very difficult to raise enough money. We need every cent! Instead we are going to use our She's A Fighter page and Paypal so everything is safe and secure for those of you giving but also 100% of the funds go to Emma's puppy.

Here is the best part, Emma named the puppy Hope.

You can use this image to help spread the word!

Saturday, May 14, 2016

Greener Pastures?

Emma & Gracie on their birthday
I have not been on here writing much lately, it is not because I do not have anything to say...quite the opposite. I feel like I have to much to say and it is all mixed up in my brain. So here goes this crazy mess of an update.

Recently I joined an online support group of mothers of chemo and cancer kids. I wish I had joined years ago. The support there is amazing and although we celebrate and grieve with each other it is overall a good place to be. I joined a subgroup called "The Aftermath", we are all families post cancer who are trying to survive. It is a great place for me to ask post-chemo questions and get advice that does not have a medical or political agenda but at the same time it is super depressing.

Why is it depressing? These are all survivors, right? It is depressing because I am realizing that the post-chemo life is not as green of a pasture as I imagined. All these years we were pushing to get to this point. The point when we just monitor the girls and pray that we do not relapse. I thought that just because we were not going to chemo weekly I would have more of a "normal" life back. The pain and heartache would lesson. In many ways that was correct. In some ways it was not. I am realizing that this fight is never, ever over. I had someone close to the family say to me, "Do you still need to fundraise? She is a survivor now so how many expenses do you still have?" When I got past my hurt I had a great comeback...sadly I was already home and had no one to tell it to! Isn't that always the case? So here it is, my answer.

- We still owe thousands for her chemo. Although we have done several fundraisers to pay those bills down we still have some balances that are huge.

- Every three months BOTH girls see a team of 5 specialists from Stanford and get a list of tests including an MRI. Each time we drive there we spend about $100 on gas and copays and it takes at least 6 hours out of my personal workday since I work from home and cannot work while driving. Even though it is every three months the girls cannot always be seen on the same day and specialists only work on specific days so we typically get 4-6 weeks of down time between rounds of appointments and each girl needs to go there 3-5 times depending on which appointments they will allow me to but up to each other in one day. Just to give you an idea, an MRI alone after insurance is $6k. We get two MRIs every three months...you do the math.

So here I am with this new support group of amazing women and it dawns on me, my life will never be "normal". We have a slim to none chance of fulfilling our dream to own a home in the next couple decades because our debt to income ratio is off the charts. I have yet to find a "start over" program that will allow us to start again at ground zero and try to keep up from here on out. Even if I did expenses are so high I am unsure it would help much. Drowning.

The only thing I can do is pray for better times, keep treading water, and try not to think too far into the future. Maybe someday things will look better.

The other thing I wanted to bring up is Emma's therapy dog. After tons of research we discovered that they typically have a 2-3 year waiting list and cost $15k and up. Clearly that is not helpful. I have her on a few waiting lists to get a "k9 buddy" which is a guide dog drop out but those waits are crazy long as well. After weighing pros and cons of each way to do this we decided the best course for our family is to do this ourselves. We are going to obtain a puppy that meets the strict breeding rules for a guide dog. We found a local trainer and we will start with the process of an emotional support dog right away. Those certificates are easier to obtain compared to others. Once the pup has that under her belt we will start the very long and rigorous process of training her to be a seeing eye dog for Emma. Most of you know she is legally blind. Although she functions very very well (most people do not know she is blind) her team is unsure if her sight will stay as she ages. We feel like it would be best for her to grow up with a seeing eye dog so it is totally normal to her and she functions as high as possible.

To make this dream happen for Emma we have a sweet friend, Kaleigh, who will do a LuLaRoe fundraiser for us. The initial costs for the puppy and beginning training and first shots etc will be about $2k. So that is our goal. The breeder we are talking to has a litter of Goldendoodles being born in the next week or two, we are hoping to pick from that litter and bring the baby home mid-summer. If you would like to help with this gift for Emma we would love to have any help offered.

Friday, February 5, 2016

Gracie

Sometimes I feel like my life is a passenger in a car that drives terribly in traffic, stop...go...stop...go. We live three months at a time not knowing if we will get tossed back into surgery and chemo. Last week we had an MRI for Gracie and yesterday we went back to her brain surgeon to discuss her results. He feels that she is still stable. We have three areas of concern we are watching, she has a shadow on her brain stem that may or may not be a tumor but right now it is not picking up enough contrast to be a huge concern. Her C1 vertebrae is still pinching her brain stem but there is enough spinal fluid getting to her brain that we do not need to surgically intervene. Last concern is her hypothalamus and optic chiasm, her right side is greatly enlarged compared to her left. It is causing hormonal issues and we are unsure if there is a tumor hiding in there making it appear large.

For now her team wants to just continue monitoring and put her in endocrinology for the hormone issues and physical therapy for her other issues. Since there are no local pediatric physical therapists we will be going to Stanford once a month and then I will be doing the exercises with her at home instead of going once a week. I am thankful she is able to avoid surgery and chemo but I must admit I was hoping for one or two issues to self resolve. It is so hard to live in this constant state of anxiety, unsure of what the future holds. If  our little warriors have taught me anything it is to enjoy the day you have today and never look too far ahead.

Thank you for all your continued prayers for Gracie. Emma is next up, on March 9th she has a minor surgery and an MRI of her head, spine, and pelvis. We are slightly concerned she might have a new tumor in her pelvis. It will be a very long day, starting in the OR and ending in the Imaging room.

On a positive note, Gracie's Make a Wish should be happening soon. We are still waiting to hear back on which wish they will grant and the time frame. I am hoping we can do it sometime late Spring before school gets out. That is a perk of homeschooling, we can vacation in the off season!

Sunday, January 3, 2016

To a New Year

Like soldiers returning home from war we watched each other, unsure of how to react to the holidays. How do you celebrate Christmas with out doctor appointments, MRIs and chemo vomit? I will be honest, it was weird and I made it up as I went along! We established our own family traditions. One of the things I love to do is limit gifts from Mom and Dad to four categories, 1. Something you want, 2. Something you need, 3. Something to give, 4. Something to read. The girls had so much fun opening presents under the tree, they all had a hard time taking turns!

Although we were without family on the holiday we had fun doing our own thing. We opened
presents, got dressed for church, came home and cooked a fancy meal of smoked turkey, and played board games. The day seemed to come and go so fast. I am just so thankful to have a "normal" Christmas. I hope they do not remember the last two years when they are grown up.

The rest of the holiday season we have been busy doing our end of the year declutter getting the house ready for Spring and the flower beds ready for seeds. Hopefully there will be another crop of veggies and chicks for us to enjoy this year.

At the end of each year I reflect on what happened and what I would like to do differently in the next year. I think about everything from how to change our homeschool lessons to how to organize my pantry and all the way to fitness goals. This year I plan to do more field trips now that the girl's health is more stable. Emma has decided that running is super cool and wants to do a race with me so I am searching for kid runs she can do with me and have her start her own race medal wall of inspiration. She certainly has the energy and stamina to be a runner! I have four half marathons between January and June that I will be running then summer is a break to have my sister's wedding!

As far as the girls health this year goes we have a few big things coming up. Right before Valentines Day Emma will have another MRI and while she is under she will have a minor eye surgery on her blind eye. It is not tracking well with her seeing eye so this surgery will help her appear more "normal". The effects only last so long so she will have it redone in about two years. This time we are ordering a full body MRI. For the last month or so she has been complaining of leg pain. It is to the point where she limps around and falls to the floor crying. I am beginning to suspect that she might have some tumor growth in her leg. It is common for NF patients to grow tumors in their legs and arms along the nerve pathways. I pray that it is nothing serious and if it is that we can remove it surgically. Sadly it is the leg she has already had a surgery on as an infant. She will have some awesome war wound stories for that leg when she is older!


CHOC inpatient last New Year's
Gracie is doing fine, her last MRI was stable and she goes for her next one in about a month unless they bump it back. We are still watching the spot near her brain stem and praying she stays out of the OR. We are still searching for a physical therapist who is an hour or less away for PT. If anyone knows of a pediatric PT or one who is willing to see a child in the Central Valley please contact us, I am getting no where!

This New Year I must admit I was a little afraid. Last year we were hit SO hard that I felt frightened to plan or celebrate at all. Thank God we made it through with minimal issues. It all feels like yesterday we were praying she would make it out of CHOC but she was so very sick.

As we move into the New Year please continue to pray for the girls. The horrible thing about NF related brain tumors and cancer is you are never considered NED (no evidence of disease), you fight your entire life to keep the tumors from killing you. You have good years and bad years and fear in-between. I am trying my best not to live in fear of the next wave of bad and enjoy the normalcy we have at the moment. I must admit, however, I fear for our future and pray that a cure for NF is found soon.