Broken

Emma started ballet this week

In so many ways I feel broken. Not just me, everything around me. A year of weekly chemo took it's toll by breaking everything. Broken.

In the most literal sense things are broken. The biggest issue is our baby bus. Driving an extra 5 hours every week, sometimes twice a week, put mileage on it. A lot of mileage. We are now looking at nearly 100,000 on this van. I jokingly say it is possessed but sometimes I wonder if we really should have our church pray over this car. Doors open and close on their own. I shut all the windows and lock the car only to return to it after a 20 minute Target trip with one sliding door open or two windows rolled down. My neighbor comes over to warn me a door is open, I am doing the dishes and the alarm goes off by itself. At a red light the sliding door opens, anyone want a ride? About every other month we are putting money into it to keep it going, it is all adding up fast. I was already mad at this car, no livid. Then yesterday my drivers side window broke in the down position in 106 degree heat. Nice. Chemo killed my car.

In a less literal sense I feel broken. A shell of the woman I once was. I find myself walking around as if in a fog, stuck somewhere between sleep and awake. My chest feels heavy, my stomach turns, my eyes cry freely and constantly. Broken.

I dream about packing up the girls and taking a few days at the Grandparents to recover. Then I remember the car issues, I don't think it would make it. Stupid car.

This week we had a visit to the NF specialist on the west coast. We discussed the girls future. I knew we would not escape ADD or ADHD since nearly all NF kids have those disorders but somehow having the doctor confirm that they have it hit hard. With all these appointments to keep we decided to homeschool the girls full time. Luckily my Masters is in Special Education so I can tailor their lessons to their needs. The doctor said Emma is ahead cognitively and doing really well with her education despite the last year.

We also discussed Emma's new issues. These panic attacks she has been having are not good. The doctor thinks she has PTSD, after some research I believe I do as well. How do I help Emma when I am broken too? She has always been such an empathetic little love, I try so hard to keep my own feelings calm to keep her calm. But my brain is freaking out, now she is too. Broken.

The one hope I have is that God heals the broken. I trust that He will put our pieces back together in His time. Until then I pray hard and hold on to the hope that one day I will feel peace again. Today I ask for your prayers. We have been fighting so hard and for so long that we need some help to build back up again. Please pray for peace and comfort for Emma and myself.

Freedom

Freedom. I feel like we are Prisoners of War finally released from our bondage. A year ago our future looked bleak. I imagined what it would be like to plan Emma's funeral. There were days I would grab her and sink to the floor sobbing at just the thought that I could not rip the tumors out of her brain myself. Now we have a future, I can make plans for her, for us. Freedom.

This week in the most literal sense Emma is going through a detox and slowly her body is returning to normal. Her hair is growing rapidly, her nerve pain in her feet happens fewer times in a day, and her chemo rage tantrums are happening less and less. Of course Emma was one of the rare children that becomes hyper from chemo treatments. She was bouncing off the walls after hospital trips and now she falls asleep easier and actually takes a nap in the afternoon.

She is detoxing in other ways as well. For so long her health was the center of the family dynamic, now she is closer to being a "normal child" then she has been in her recent memory. I see her trying to make sense of it all, I am too.

Now that we are off chemo it is inevitable that other issues will come fill the giant void that it once consumed. I find myself sitting in shock that she is legally blind. Of course I knew she was blind and needed glasses to see out of her only seeing eye but now that I have a clear head I am realizing my child is blind. She may never drive a car or do well at sports that need depth perception. Of course Emma can and will do anything she sets her mind to do. That is one determined girl. I am realizing it is time to research things to help children with low vision.  Although my MA is in Special Education I had only two classes on the blind. My focus was the Deaf and Hard of Hearing...anyone seeing the irony here?

Emma goes to the surgeon on Thursday. We will be monitoring her main tumor for more debulking surgeries to prevent it from causing issues like seizures. She will also see the Neuro Pediatric Opthalmologist to check her eye health and get a more accurate prescription.

Gracie also gets a break from Stanford tests and medicines but she will begin a party of different therapies as soon as I can find specialists that are not two hours or more away! She needs to get into Occupation Therapy, Speech Therapy, and Physical Therapy. Of course we live in an area where all those doctors do not take children.

This week was our first full week of homeschool and we took "no more chemo" pictures with the

same photographer who did our "before chemo" pictures last year. Next week Emma and Gracie start ballet! It has been a life long dream of mine to have a tiny dancer and I cannot wait to watch them twirl. For me it is a sign of normalcy, I can sign Emma up for a class with her peers. That makes my heart happy.

I am still not in a position to share publically what happened with Emma. So many of you wonderful friends and family members have asked gently what occurred. I wish I could talk about it, soon, just not yet. Just for now let's be happy that we are free from chemo.

Who Am I?

Emma and I are having an identity crisis.

For so long I was "Emma's Mom" and "Chemo Mom". For so long Emma was sick and immune compromised and pumped full of medicines. Now both of us are staring at each other asking the same question, "who am I?"

I am great in a crisis. If you are ever in a state of emergency I am your gal. I have a clear head, I get the job done, I focus on the task at hand. I go into a primal survival mode. It is when it is over that I need to be watched. I fall apart. It hits me all at once, the horror, the loss, the pain. It is when it is all over that I cry the ugly tears. The tears that leave you with puffy eyes and a drenched pillow. I have suffered this last year slowly, like some torture that ends in a painful death. I was holding it all in for so long I became numb then it would all hit me at once and I would find myself in a full blown panic attack. Stomach ulcers, migraines, heart conditions...all products of my survival mode. Then it all ended, we go off meds, Emma will be okay. Instead of relief the grieving begins.

So I go back to before cancer, before surgeries, before doctor appointments. Who was I then? I remember baking, I remember being very focused on wholesome eating and organic as much as possible, I remember sewing, and trips to the river. I remember that doctors were only visited once a year and dentist twice a year. I remember teaching Sign Language and classes on essential oils. I remember making all my own lotions and soaps from scratch. I remember having time to cloth diaper our babies, line dry our clothes, and make freezer meals.

I miss her. Happy Anya. The woman who made plans for the future and imagined all three amazing girls growing up happy and healthy. I miss being happy.

How do I find her again? I will never be the same, these couple years left huge scars. Moving forward I will not be so pleasantly naïve. I will not be so carefree.

Emma asks everyday if we will go to the doctor. She asks about specific nurses she bonded with and friends we made at the hospital. Every time we go to Target she cries that she does not want new medicine if I push the cart too close to the pharmacy. At Stanford we had to do an in and out blood draw to check her immunity and run some hormone tests. I explained that she was not getting medicine and it was just a blood draw. She flipped out. It took three of us nearly an hour to get her blood work done. Nurses who walked by the room must have thought we were doing something horrific to her. She cried, I cried. I think I even saw a nurse tear up. In the mornings when I change her shirt she asks about her mediport, does she still need it? Don't touch it Mommy. Why doesn't Gracie have a port? Is it still a part of her story? Emma will never be the same.

I miss her. Healthy Emma. The Emma that didn't ask about trips to the doctor or medicine. The Emma that didn't have surgery scars or ports. The Emma that had long never cut deep brown curls instead of this post chemo frizz. The Emma that could play freely without a mask or asking for hand sanitizer. The Emma that believed and trusted me when I told her no medicine today.

How do I find her again? How do I stop myself from cringing every time she touches a door knob or cart handle? How do I explain she will not need to go to the hospital all the time anymore? How do I help her adjust the level of attention in the household. For so long the home revolved around her, now the power pours smoothly out across the surface of five individuals and not just her.

So here we stand, mother and daughter. Our battle won and a new war in front of us. This time we know that this war can be fought. This time we know we will survive. Our scars make us beautiful but they changed who we are. Now we wait for God to tell us what is next. I have to believe that these scars were put here for a reason and our pain was not in vain.

So I ask dear God, who am I?

When Your Child Survives

I should feel happy.

I should feel joy.

Instead I feel anger.

Resentment.

Frustration.

Guilt.

Fear mongering led me here. Lies lay the foundation. Depression closed the curtains. 

It is dark where I sit.  I mourn the loss of my own life the last two years. I miss my good health. I miss being happy. I miss being able to make plans for the future.

Today Stanford handed me back my life and Emma's. For one brief moment relief washed over me. My baby was going to LIVE. She was not going to die a horrible death from a cancerous brain tumor taking over her functions. Live. It would be a life of monitoring and surgeries and medications but it was going to be a life. The relief washed over me and was quickly replaced by anger.

I felt the Mama Bear ROAR inside of me.

Emma was not miraculously healed, she was accurately diagnosed and now had a treatment plan appropriate for that diagnosis.

What if I fought harder when the doctors refused to do my referrals? What if I pushed Stanford harder to accept the referral from our family doctor? What if I said "screw the insurance" and carted her off to Stanford at the very beginning when our insurance refused to cover the facility? Did I push hard enough?

Tears.

My newsfeed displays bald heads, "in memory of" pictures, and parents begging for prayer. Guilt. Why do they have to continue to fight and we are now free? I should be happy.

Last year my kid had cancer. This year she will not. This year I will not have nightmares of her funeral. This year will not be filled with chemo tantrums, needles, handfuls of hair on our pillow case.

We are free. Why can't I be happy?

Take Back My Life!

NO MORE CHEMO!

There are many details to this story, some of which I will not share until I have sought advice. However, I can tell you that we are out of chemo for now! Standford has two options for Emma, the tumor board will discuss her case Monday and decide then contact us Tuesday with the plan. All medical decisions are made by a consensus of several doctors. Makes sense to me! That makes it impossible for one doctor to push an agenda.

Her MRI from Tuesday showed no tumor growth (good) but also no positive effects from the chemo at all, in fact, her tumor has some enhancement. Clearly the chemo is not working. Humm...what have I been saying for months?

Best Case Senario: Emma will get three months off all meds and have another MRI to determine what her tumor does on no medication. It is possible that it will not grow at all.

Worst Case Scenario: Standford has a three trials open to NF1 pediatric patients that Emma is qualified to join. The one that the new oncology guru would like to pursue is a nonchemo drug that is given at home in pill form twice a day. We would go in to clinic once a month for a check up and blood draw. It will not effect her immunity, make her lose her hair, or any of the other nasty things that chemo did to us. The only side effect seems to be some leg swelling. A much better alternative to chemo!

So as you can see even worst case is a much better quality of life for Emma and for us all! I finally feel like I can take a seat, trust a team, and go along for the ride. Oh and a huge thank you to Standford for recognizing that hospitals are a tiring and scary place to be. From free valet parking to free Starbucks coffee in the Oncology waiting room, to running on time, to a kid friendly things everywhere, this place rocks. Let's just say they had interactive touch screens and a huge train (HUGE) for the kids to play with while they wait. They also have separate well and sick waiting rooms!

So the future, what does it hold? Well GOOD NEWS, Emma will not die from this! She will need meds and tests and monitoring and possibly more surgery but she will not die. In fact, she has been downgraded! Her type of tumor tends to continue growing until puberty so we have many years ahead of maintaining a proper size. If it grows too much it can make her blind in her only seeing eye or cause hormone issues. Next she visits the surgeon to monitor her for possible debulking and the pediatric neuro ophthalmologist to do an in-depth eye exam. So at least two more appointments this month even if we get a break from meds.

I am still in shock...no more chemo looming over our lives? No more ER trips or tossing our cookies? So what will life look like out side the glass? Ballet lessons, Sunday School, Homeschool, spontaneous day trips to the beach, ice cream, laughter, happiness. Time to reclaim our childhood. Time to lick our wounds and heal from this emotional Hell. Time to create some change in the medical practice that left us in the lurch. Time to run, run free. Time to raise money for other kids who need our help. Time to LIVE.

Like I said before, I will get more details later. For now this is what I can share and it is finally some good news for us all!

The wind of freedom blows

 Die Luft der Freiheit weht

 The wind of freedom blows

We carted both girls off to Standford to find answers. Today we got some answers but mostly more appointments for Emma. These day everything is a liability risk so they need to see Emma in person in the Neuro Oncology department and get her in another MRI before telling us the treatment plan. The good news is they accepted our case and Emma is now officially a Standford girl!

Next steps, this week I will be organizing several appointments. First they want Emma to do an end

1 year of chemo

of chemo MRI there and after see the Neuro Oncologist. After the results are analyzed from the MRI we will go back to Dr. Edwards, the Neuro Surgeon for another consult on her brain tumors. She also needs to see their Neuro Ophthalmologist and Endocrinologist. Many many new appointments for her and many more miles to pack onto the baby bus (our mini van).

Like I said, not many answers now. Thank you so much for all the prayer and supportive messages and care packages. A special thank you to Fitness Factor, Jared and Joy, Beth and her coworkers, Jennifer, Kimberly and her husband, Nicole and her girls, Katie, and our church family. We really feel the love, I wish I had more to tell all of you. I can say we are in excellent hands at Standford and the future already looks a little more bright for our Emma.

We are trying to refocus positive energy on helping others. In September, to honor Childhood Cancer Awareness Month, we will be having another auction on the She's a Fighter page. The purpose is to raise money for 6 little girls that Emma's running team is supporting this Christmas. If you can donate an item or help in anyway please contact us. These little girls need a happy Christmas to look forward to during these chemo filled days.