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.

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.

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.

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

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!

"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?

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.