Holiday Prep

Somewhere Fall happened when I wasn't looking. It is amazing how time flies by when you are not

on weekly chemo! The girls are happily decorating for Christmas and enjoying the fact that they can fully participate in festivities. Last year we were under house arrest or we were inpatient from chemo so we sat out on many things. This year Emma has already been to Disneyland, attended a birthday party, and been to church!

A few things have been happening in the background. We are waiting to find out which wish Gracie will get for her Make a Wish. She keeps asking me if we are doing it today! She is very excited. Emma got new glasses after we saw the Pediatric Neuro Ophthalmologist. It seems that her one seeing eye is getting better post chemo and we actually got to decrease her prescription! What a blessing.

Daddy and I have been running more races and working on getting healthy for this kiddos. His back is much better, he still has painful days but he is finally able to go to work and do yoga with me at night. I have seen a huge change for the better in myself. Not only do I look better but I feel better and that is a good thing because as I feel better Emma feels worse. She is really struggling with her emotions and hyperactivity. I feel so bad for her, she is so advanced she will say things like, "I am so grumpy and I don't know why!" It makes me want to cry. We are still waiting on Psych to see us at Stanford so in the mean time I have her deep breathe with me, do yoga, and apply her oils. Lately she has been asking to run with me so I am going to start taking her with me on a small loop at the

beginning of my run and drop her off to finish. If anything it will give her a good healthy outlet for all this energy!

Upcoming things: We go back to the Neuro Surgeon right before Christmas to check in and go over everything, he is the NF expert at Stanford. When we go we will be taking teddy bears from Trader Joe's to the hospital for all the kids who are stuck inpatient over Christmas. If any locals want us to drop off any new and unopened toys or jammies we can bring them for you! Next week I will be sending out the She's a Fighter Christmas boxes to Alanha, Adriana, Ariana, and Izzy. If anyone was planning on adding anything to their boxes please get it to us this week.

Normal or Not?

I spend many days pondering this question, is this "normal"? Am I seeing normal behavior from twins? Is this normal for a premature baby? Is this normal for a child who has brain tumors,NF1? Is this normal for a child who went blind at 2 years old? Is this normal for a little girl who underwent weekly chemo treatments for a year?

As parents we try not to compare. We try not to say what is normal and abnormal for a child and instead see the child on a spectrum. Ya, in a perfect world.

If I was a perfect mother I would never ask myself the normal question. But I am flawed and I ask that those questions above to myself several times a day.

For a child of her age Emma has been through so much. She has not lead an easy life. I argue with myself to give her room. But...

Life with Emma is not easy. She is easily angered and throws wild rages. She rarely sleeps and we have tried everything from essential oils to noise machines to light to no light to security objects. No matter what we try she is up several times a night. She turns on the lights, runs through the house, toilet papers my bathroom, empties an entire bottle of shampoo in her dry hair, and paints with toothpaste. I hide things and she finds them. We take turns getting up with her at night and directing her back to bed only to be met with an Emma rage at 3am. Now the whole house is awake.

I try to have her work out with me during the day and do yoga to center her but each thing I model and do with her I am met with fierce resistance.

So I spend my days asking, is this normal for a 4.5 year old? Will she grow out of it? Will it just get worse? As we wait for Stanford to get us into their Psychiatric clinic wait and pray and try to run off my frustration. I love this kid and the questions of normalcy just will not stop.

The Spirit of Giving and Receiving

The spirit of giving.

Ari of She's a Fighter turned 3!

In our home we do not tell our kids that Santa is a physical person but rather that he was a real person and embodies the spirit of giving. We use the story of St. Nicholas to teach our girls that giving is always rewarding and inspires others to do the same.

Sometimes things are given to us. This week we had an amazing and unexpected gift from a group of Mothers of Multiples. It came at a time when we were really struggling emotionally and physically from life just beating us down. Poor Daddy threw out his back and was in and out of the hospital and different doctors offices for meds and tests. He was missing work that he would not get paid to miss because it was a new job with no vacation saved up. I took that precious gift and placed it in our home safe for the end of the pay period when we run up short paying bills. That night I slept soundly knowing our needs would be met.

We also had Gracie's Make a Wish ceremony this week. I cannot think of any gift that would brighten her day more than getting to dream and wish BIG. She had so much fun talking about her favorite
things. Her three wishes were to, 1. Be Princess Sophia for a day (from Sophia the First) She said that meant going to a castle and having a tea party. 2. Seeing Cinderella's castle at Disney World. 3. To swim with Mickey Mouse and the gang on a Disney Cruise. So now we wait for the Make a Wish board to meet and pick which wishes they can grant. Typically they give the parents two options. We

will keep you posted!

Giving to others. This is something I really push in our home. We are constantly raising money for other fighters we know or sending them little cheer up gifts. Even if it is just sending the Chemo Mama some Starbucks funds, we know a little goes a long way! Each holiday season I have the girls individually give something to someone that is outside of our regular gift exchange circle. This year they have been helping me make and find special presents for the other four girls in She's a Fighter.

Celebrating 3 more months off chemo

Through out the last two years of giving to cancer friends we have occasionally been met with some resistance from others. Why are you helping that family? Aren't they wealthy? Now that is sad. Giving is not about NEED it is about LOVE. When we give to these other chemo and cancer families we are not asking for a W2 or passing judgment on what they chose to spend the money on. If they need food or gas and the money helps with those needs that is fine. If they money pays for Breakfast with the Characters to make a chemo princess smile that is wonderful. If it buys a pretty dress that brings a smile to the face of a child that constantly struggles with pain that is fantastic. If we only gave to those who are physically poor we would miss an amazing opportunity to reach out to those who are emotionally bankrupt. If you take anything away from this post I hope it is this, we accept gifts in LOVE and we give gifts in LOVE, no strings attached.

Now I hope that inspires you to give to others as well! This time of year Children's Hospitals are always in need of new and unopened toys for kids that are there on Christmas Eve and Christmas Day. For the last two years we were inpatient and were given a new gift. It actually made me cry both years because I saw Emma smile wide at the sight of a huge box of toys where she got to pick one. If you are local to us we are taking gifts from us and teddy bears collected from our local Trader Joes to Lucille Packard Children's Hospital at Stanford when we go see our Neuro Surgeon on Dec. 22nd. We can take anything you gather along with us. If you are not local I encourage you to find your own neighborhood Children's Hospital and drop off a toy or two, I promise that toy will get love!

Healthy Family Quest

Self care. I cannot tell you how many times loved ones have told me to "take care of myself so I can take care of the girls". Easier said than done! It is a slippery slope, the kids were up all night then awake at 4am. You stare at the half eaten toaster waffle and think, "sure, why not just have that for breakfast?". The kids are running circles around you, no time for lunch so you skip it. Baby is teething and refuses to nap so snack comes and goes with nothing of value in your tummy. At 3:00 you feel like you were run over by a truck so you reach for the coffee. Dinner is spent shoveling whatever you can into your mouth so you can get the monsters into bed. Life with three toddlers. I know it well.

Life is hard enough with three kids and then you lump in depression, severe medical issues, body conditions like PCOS and hypo glycemia and you know what you have? An overweight, unhappy Mommy Monster!

For about a year now Daddy and I have noticed that our Gracie is never full. She will eat and eat and eat until she throws up. At her last MRI we found a reason for this behavior, her hypothalamus is greatly enlarged. Combine Mommy Monster with the fact that one of my children will struggle with healthy portions and weight gain from something she cannot control and you need an overhaul. I needed to lead by example in healthy eating, proper portions, and exercise. If she grew up seeing me do it and it was all she remembered maybe she could avoid a life of weight struggles.
We went into Emma's next MRI and Daddy threw his back out, he was literally crawling to the car for me to take him to the ER. They told him he was over weight and had a herniated disk. Enough was enough. So I joined Beachbody.

Why? So many reasons. In your 20s you can "fake it to make it" with your weight and eating habits. Then 30 hits, three kids are born, and the game changes. Life doesn't stop when you have three girls in 20 months, it was hectic. Then the word no one wants to hear, CANCER. My baby had cancer. Suddenly the world spins with doctor appointments, MRI tests, drugs, surgeries, and tears...so many tears. Two years later Gracie was diagnosed with brain tumors as well. After this I couldn't handle my emotions on my own and went on antidepressants. The irony in antidepressants? You feel better emotionally but they cause you to gain weight in all the wrong areas leaving you depressed about your body. A little weight gain never bothered me before, I could just run it off. But now in my 30s, depressed, chasing three toddlers through a hospital I was unhappy about my body. It had betrayed me. First it couldn't handle the stress of cancer and now it gets fat. Body hate. I needed an outlet so I started running, pretending I was running from the cancer, the
needles, the medical debt. I loved it but I hit a wall at the 5k mark. My body would just collapse. I knew I needed to cross train and make food work for me, not against me if I wanted to get to my goal of a marathon. So I started Shakeology and joined a 21 Day Fix. After only one week I ran a 10 mile race and after two weeks I had lost 3.5" and was back in my skinny jeans. But the best part is I had energy, my crazy coffee cravings lessened, and I was happy. For the first time in two years since Emma's diagnosis I was happy.

If you want to follow along in my family's journey to being healthy you can follow me on Instagram (anyaheidenberg) or my webpage,
www.beachbodycoach.com/anyaheidenberg. I am only going to post on our blog and Facebook page ever so often so we do not annoy any of you.

Stable

The day started and ended with tears.

I stood in the kitchen, back to the entry clutching my coffee that was catching tear after tear. My husband was lying in bed unable to move from a herniated disk and I was waiting for the doctor offices to open at Stanford. The MRI on Friday seemed light years away. The last few days had been a blur of doctor visits.

Low point.

My friends call me SuperMom because I do it all. Alone. No family near by to lend a helping hand or do a grocery run. Just me and a husband who normally works long hours but is now out of commission and a dear friend who helps way more than she should. Amber comes when she can but 99% of the time I do these appts alone with at least two of our three children. The thing is, I do not feel like SuperMom. I feel like an empty shell of the human I used to be. At times I gain some of who I am back. In down times of meds or when Daddy has a holiday off. As I ran the 10 mile Serena SF run across the Golden Gate Bridge two weeks ago I saw a glimpse of her. The woman I want to be. The woman that aggravates an old ballet injury in her hip on the second mile climbing up what can only be described as a "baby mountain" but says, "I will finish what I started." Then she crosses the finish line.

The day started in tears with me wondering who I am and if I can handle all of this mess. After a few hours my calls were returned. Clear scans...stable...made the right choice. "I am sorry, what? Can you repeat that?" Then the Oncologist said something that will ring in my head forever, "You are stable. You made the right choice to pull her off of Vinblastine." Tears.

The day ended in tears but this time happy tears. I was right. I had been right all along. She was stable now. I could breathe.

This is not the end. Emma will still be monitored every three months for the foreseeable future. There may be more meds and there most definitely will be more surgeries (next one in three months on her blind eye) but for now we are free. Free to enjoy the holidays with no meds. Free to train for my marathon and go to Disneyland and be a normal family. Freedom means so much.

This week was rough. It taught me some valuable lessons. First, that I am capable of pushing beyond my limit. Second, that some people will never come to help no matter how bad things get. I need to

let that go if I want any type of relationship with them. Third, being a single mom SUCKS. Hats off to Amber who does it alone (but not for much longer! Congrats on the engagement!)

What is next for us? Well Daddy is off work for a week with no pay. Awesome, right? I am trying to host shows and sell things to make up the difference so I can still pay bills AND get Christmas presents. If anyone wants to order Matilda Jane for the blanket promo please do through us so my girls can get some goodies for Christmas! I will be starting a new home business this week as well to try to make some income from home. I know what you are thinking, "Does she have the time for that?" No, no I do not but do I have a choice? No. I am going to just do something for income I am already doing anyway so I will be a Beachbody Coach. If anyone is interested please contact me for info, if I can do it with all my craziness you can too! Last, and the most fun, we will be throwing Emma another No More Chemo party but this time she has requested Anna and Elsa themed. We will only have a couple friends over and all handmade since we are low on funds but I am Pinteresting away with Emma to come up with something fun!

Before I sign off a HUGE thank you for all your prayers and thoughtful messages of concern during this time. It means so much. I know you do not see this side of it but it usually makes me tear up and smile that someone cares so much. We love all of you and are so thankful you are on this journey with us!

Break the Silence

All mothers, especially mothers who stay at home and homeschool, have "those" days. The days where you find yourself thinking, "I love you but I sure do not like you right now." or "why are my kids being jerks?" Guilt sets in right away for even thinking those things. The children I prayed for through all those years of infertility. The children I fight for daily to have a better childhood then I had and two loving parents who are present in their lives. These precious gifts from God.

Then Emma steals her baby sister's cracker and hides it in her shirt lying to my face. Do not tell me there is no such thing as original sin!

Life with three little girls is hard. Add in PTSD from chemo trauma / surgeries, NF related behavioral issues, and the fact that there are TWO of them and you have yourself a really good party. Lately this party gets started between 2 and 4am. Emma wakes up and begins to wake the entire home by turning on lights, yelling "good morning", and demanding pancakes. Try explaining to a four year old with trauma that 2am is not the time to party and you will feel like you are hitting your head against a brick wall.

Brad and I have noticed that these hard days are happening more and more. The home dynamic is becoming nonfunctional. The girl's have an NF specialist at Stanford that says these issues will only get worse and not better so we are getting the girls into behavioral intervention.

Why am I sharing this? These past few weeks I have felt so alone. An island of suffering with no one who understands. I think there may be more of you out there with NF kids facing similar issues but embarrassment prevents you from speaking out. To be honest, I am embarrassed too. I have one very well behaved child, I can take her anywhere and she will sit and play and be sweet. My twins on the other hand, you need the patience of a saint! I am sharing because I hope to connect with some other NF parents or adults and pick your brain for ideas to help the girls and our family. Please break the silence.

2 years

2 years ago at the pumpkin patch

Two years. Half of Emma's sweet and short life. This week marks two years since we first discovered Emma's issue with her eye. It was a normal day, we took the girls to a local pumpkin patch and I was taking pictures like usual. When we got home Brad mentioned that one of Emma's eyes was drifting off in a few of the pictures. He was right. I made an appointment with the pediatric optometrist expecting to come out with eye patches and a possible surgery date to correct crossed eyes. Instead we left with strict orders to report for an MRI. He saw a tumor. That is when everything changed.

I am not the same person I was two years ago. I morphed into some kind of superhuman that runs on coffee and prayer. I know weird acronyms like ANC, I know what size needle Emma's port takes and how to access it properly, I now huff as I fill out "health history" reports on paperwork for Vacation Bible School and new doctors. I carry hand sanitizer. I live appointment to appointment. In downtime I still hold my breath and pray for no more bad news. Pills, pills everywhere. Mostly for Emma but now some for me. The person who took pride in diet change and essential oils to help nearly anything now takes daily medication for conditions related to stress. Your heart can only take so much, this I know to be true because now I take medication for my heart.

You never think it will be your child. It seems too horrific to imagine that your child would look like those St. Jude's posters. Then one day when you are holding a chunk of hair in your hands that came

Last year sleeping off chemo

off her head the horror of it all sinks in. Your life has changed.

You long for the day when it will be over and you fight as if there is a finish line. But the sad reality is it is never over. Emma is on her first break in 2 years from doctor visits, we start again in a couple weeks. Has this felt like a break? No. When you are strong because it is your only option your body and soul is worn down to the point that when you get a break all that happens is you realize how horrible it all was and have an emotional breakdown. I have said in both a teasing way and a truthful way that I might need a stay in the "loony bin". Honestly, if these three didn't need me so much I would have checked myself in a long time ago.

Two years. My life has been turned upside down for two years. It is all Emma remembers and that makes me so sad. She tells everyone, the person at Target, the lady in line at Trader Joe's, "I have a port but I don't go to the doctor anymore." For now...what if this all starts again? I shudder to think if Emma and I have to go round 2.

This week

The reality is Emma and I will never be the same. We walk this earth with both physical and emotional scars but I try to see that as making us more beautiful. Just like a war veteran has a story to go with each scar we do as well. We have a story and it is epic and it is ever ending.

This week I was building a Pinterest board for Gracie's Make a Wish. She has lower verbal skills then Emma so I thought a visual display of her favorite things would be helpful to the wish granters. We came across a quote in our search, "Even miracles take a little time." The Fairy Godmother said that. I believe that it is true. God is working in our lives and even His miracles take time. Until then I run on coffee and prayer.

Karma

I have said for years that I did not believe in Karma. Can you blame me? No mother of a child filled with brain tumors wants to think somehow that was put on her for something she did in the past. How horrible. However, today I was chatting with another mom who is in this battle and said that I do believe in a smaller form of Karma. The kind that if I invest time and energy and resources into this extended family of childhood cancer and tumors that it will come back to me. Not always in the way that you expect but it is always just what you need. Some how we survive and I truly believe it is because of our Faith in God and our help from kind people.

Katie and I daydreamed up this plan to run the Disney marathon for a group of girls. That morphed into a conversation about how terrible the holidays are for families going through chemo and hospital appointments back to back. For two years our holidays have been taken over by brain tumors. It sucks. It is not a normal Christmas at all and it comes and goes but leaves this feeling of being "robbed". Last year I tried really hard to have a good Christmas for the girls. I started making and finding presents months ahead of time and set up fun activities for the whole month of December. We did have fun but we were alone. No family at all. That stinks.

Well not this year for our six girls. This year we designed an online auction to raise funds for these girls to have a happy Christmas, whatever that means. If it means toys that the family could not regularly afford because of high medical bills then it is toys. If it means a family outing that would normally have to wait for funds then it is that outing. If it is flying family out to the hospital to spend the holidays together, even if it is as a hospital, then it is for flights.

I am so happy to help these other girls! You may have noticed that both of our twins were in the auction, I did that for a reason. Gracie has her own set of tumors and challenges that earned her a special Christmas but I also wanted a little funds to let the girls play St. Nick to other kids. Emma, Gracie, Cora & I will be buying gifts or necessities for other friends that we could not get in the auction. If you know of a child who needs Christmas cheer, maybe he is inpatient in the hospital, maybe she just lost all her hair from chemo, or maybe you know another family with multiple sick children like ours. We want to hear about them!

Thank you for everyone that donated, played admin, and won items. It was certainly our smoothest auction, everyone paid on time and we had very little drama! Let's hope that continues as we get all these items mailed out!

Reset

Sometimes in life we need to hit the reset button. Sadly the rewind button never works and there are certainly times I have wished for a fast forward. However, reset, that is button that you can use. For nearly two years we have been Emma Central. All things Emma related are handled here. We try to stop and play but mostly life is filled with appointments and hospitals. When chemo ended Emma and I were left staring at each other...what now? She would have nightmares, I would have nightmares. She would have panic attacks, I would have panic attacks. We needed a fresh start.

Any mother of two or more children under four years old will tell you the last thing they want to do is pack up those kids and go on a road trip with out their spouse. I knew the ride down would be horrible, perhaps something akin to Dante's Inferno? My need for a fresh start was stronger than my need to stay behind so I packed up the girls and hit the road. Four hours in I felt I made a horrible mistake. It was too late to turn back so onward to Los Angeles.

I am glad we went. I was able to get some time off to reconnect with my first life partner, Amber. We

Emma and Auntie Amber

have that special friendship, family connection that only comes along once in a lifetime. Sometimes it is the spouse you marry and sometimes it is your best friend and sister. We ran fast away from all five of our kids and escaped for a day. It was exactly what both of us needed.

The days with Grandma and Grandpa made me realize how tired I am at home and how much I do around here. Life is non stop in this home. It is hard without brain tumors and blindness and chemo. I will miss the grandparents and truly wish I could have packed them up in the car with us!

This coming week will be a busy one as well. Tomorrow is the deadline to submit donation information for the She's a Fighter Auction. This online auction will go to the girls for Christmas funds to make it a happy time. Future fundraising will go toward the families to help with bills and hospital related expenses. If you can donate anything this is the  form to fill out. The Auction will open for bids on Sunday and it will close with the end of September on Wednesday. If you cannot donate an item please come and buy an item to support the girls! Here is the link to the group page where the auction will take place, She's a Fighter Auctions.

Just Keep Dancing

My sister asked me what she could do to help. I sat at my cell phone with tears not knowing what to say. "I am hungry but I can't eat and I am tired but I can't sleep." Maybe it is from being strong for so long. Maybe it is all the extra life annoyances the last two weeks like the car breaking down or the transition as Daddy changes jobs. I am not sure what exactly it is but I believe it is many, many things that add up to this feeling of being "done".

I was talking to my friend the other day about our car problem. Little did I know that the day I was getting my car evaluated at CarMax she was as well. We have the same problem, chemo and numerous health related appointments put so many miles on our car so fast that the cars are breaking down. You are faced with an impossible choice of putting money you do not have into a car that will just keep eating money or try to find a way to replace the car. Sadly the cars are now worthless from the high mileage and still have a couple years of payments left. Both of our families are in the same position, we can't afford to replace the car. She said she vented to an NF support group and heard a resounding, "BEEN THERE!". It is not something you consider when dealing with our type of situation but apparently it is a common issue...and a huge one. If we do not have good and reliable transportation for our kids then we cannot get them to appointments and why waste money on a car money pit when it can be put toward the child?

This conversation gave me an idea so I am going to put it out there to the world, a chemo kid transportation charity. The charity would buy loved but still good condition cars, check for any issues, and clean it for our immune compromised kiddos. Then families would apply that either need transportation to get to chemo or had there car ran into the ground from chemo and cannot afford to replace it. People could even donate cars to the charity for a write off. So there is my idea, now someone who reads this who has money please make it happen and I will help! I even have the first family you can help, Jaxson, you get the first car!

In happier news Emma and Gracie had ballet today. It was so sweet to see them dance around and
laugh. What a brave teacher they have, a class of 3 and 4 year olds is no joke! Watching Emma today brought a little happiness to my very stressed heart. Life can be so cruel sometimes but she dances anyway. It is a sweet little lesson I am trying to teach myself, just keep dancing.

Surprised by Death

At this point in our journey I really shouldn't be surprised by death. But I am, every-single-time. When my friend Katie and I first discussed how to organize the She's a Fighter marathon running team we talked about each of us running for a specific child to make their Christmas dreams come true. I reached out to our friends and asked for referrals to parents and children who really needed a pick up, especially at Christmas. We found six little girls and moved forward with the project.

Two days ago I found out that Natalie died. She was on hospice, I should have seen it coming. I should have expected her to go home to God. Was I shocked? Yes. Maybe the chemo mom in me needs to believe that they will pull through, that this is just a bump in the road and things will turn around. Once I lose hope I lose everything.

I was in line at the drive thru Starbucks on my way to a co-op homeschool class with the kids. I

checked my facebook messages to make sure that the other Mama did not message me needing anything. Instead I found a message from Jenna, Natalie passed this morning. I sat in my car with tears running down my face, the girls in the backseat asking me what was wrong and why I was crying. I couldn't even bring myself to say it. That day was Emma's No More Chemo party. We were celebrating a huge milestone for her. One year of weekly chemo down and a three month break, we had happiness for the first time in a long time. I decided not to tell her until the next day.

I pulled up to the window and reached for my coffee with red puffy eyes and a tear stained face, "Are you okay Ma'am?" she asked. "No, I am not okay. But thank you." I knew Emma would take it hard, another friend we prayed for was gone. So much death for a 4 year old to experience. I cried the whole way to class then put on my game face for lessons and the party. The next day I told Emma and we held each other crying then released a balloon to heaven for Natalie.

Chemo might end, you could even win your battle with Cancer. Do you ever win the war? No. Once Cancer finds you life changes. Some of it is good; you live more in the moment, small things that would have created anxiety before are laughed off because you have bigger fish to fry. Somehow you develop a superhuman ability to withstand enormous amounts of pain and sadness and heartbreak. The negatives are too long to list. The tests, the needles, the tears, the bad news, the doctors who do not give a damn, the doctors that care too much, the waiting rooms, the unplanned ER visits, the inpatient stays, the hospital bag in the back of your car, the toll it takes on your own health, the damage you do to your other children from absence, the long list of medications you have to write every time you get a form for your child. That ends and you think life will begin again. Instead you are faced with nightmares, flashbacks, and fear of the future. A future with a child who is blind, needs extreme monitoring for the rest of her life, a child who will never know motherhood from her womb, will never know a life outside the glass walls for more than three months at a time, a life always living in fear that it could return to the hospital.

You might leave the hospital but the stories follow you home. Friends that are still stuck in that world. Children who die. Parents who struggle to keep their mental sanity at a time when most people would ask to be committed to the looney bin. You are at home but somehow you still "live" at the hospital.

I know this is a long and rambling post, that I do not have a clear point, that you may be somewhat confused why I am sharing this information. I share because I want the world to know that THIS is our life. This is how we live. It could get better, it could change. We need a cure, we need better medicine, we need more specialists with options better than chemo. We need more funding. What we need is people like you to care. Today it is our war but tomorrow you could join us. Share on your social media, be mad that Natalie passed away so soon, ask for more funding. #showyourgold

#showyourgold

Emma and I are doing better, both of us are still struggling with nightmares, panic attacks, etc. but now that it has a name it is easier to fight. This week we have been stuck in our tiny home with no car, the baby bus has kicked the bucket yet again. Cabin fever anyone? I have been doing extra involved homeschool lessons to keep us all sane.

We got her No More Chemo pictures back yesterday from the photographer. They are so amazing I started to cry! This is the same photographer that took Emma's before chemo pictures. I am astounded by how much she has grown this year and how healthy she looks being just one month out of chemo treatments. When you are in the fight you do not realize truly how bad it looks, once you can step back it is pretty shocking.

Does childhood cancer make you uncomfortable? It should. Before Emma was diagnosed I used to intentionally leave the movie theater during St. Jude's commercials ...it was too horrible to imagine. Then I was forced to live it. Be stronger than me, take a stand NOW. Look at these children and do something. Spread awareness and demand more funding. These kids deserve a childhood.

We might be done with chemo for now but our war is far from won. Emma will need heavy monitoring every three months by a team of 5 specialists until puberty. She will be on and off medication during that time and most likely there will be more brain surgeries. Although her prognosis has improved it will be hard to maintain a sense of normalcy during these years.

As most of you know Gracie also has tumors. Unlike Emma she has NF spots in both of her eyes. She will also need active monitoring to make sure those spots do not steal her eyesight like they did to Emma.

Between the two girls we will spend a lot of time at Stanford for testing, monitoring, surgeries, and medicine. Thankfully we have assembled an All Star team over there and I can rest easy knowing the girls are receiving cutting edge care. I just wish there were more options.

Fight for a cure. Right now it is Emma fighting, it is our war, but cancer does not care who you are. Let's stop it before it steals more childhoods. Go gold on your social media, if you have any contacts with media outlets get them involved, share as much as you can. These kids only get 4% of cancer funding. 4% is not enough. We stand behind St. Baldwicks as a reliable source for research funding. If you feel led to get involved please visit their possibilities for donations and fundraising. For those of you who are also ProLife you can rest easy knowing that their research funding does not use human stem cells.

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.

Lessons from Chemo

These last 18 months have been a roller coaster, mostly free falls but some highs. This week I was stuck at home (quite literally) and had some time to reflect. Here are the lessons chemo has taught me,

Chemo port surgery

- You are stronger then you can ever imagine. 
Each time our situation became worse I can clearly remember turning to my wonderful husband and saying something like, "If Emma ends up having cancer you are going to have to check me into a mental health facility." I was not joking. Then I got the call that it was cancer, cried for a few hours and put on my big girl face to fight this dragon. Each free fall it was the same, I thought there was no way I could handle more but more happened and each time I kept living.

- There comes a time when you must admit your faults and limits. 
Most people do not know this but when we were in Hawaii I was in a great deal of pain most of the time. I had extreme stomach pain and felt "off". The day we got back I went to my doctor and discovered that all this stress caused bleeding ulcers, vertigo, depression, and a heart condition. I was faced with the choice of medication or developing life altering conditions. I swallowed my pride and went to the pharmacy. Best choice I ever made.

- You realize that somehow ends will meet. 
We have been close...too close to ends not meeting at the end of the month. Somehow we always make it. I budget tighter, friends start a meal train, people do fundraisers on our behalf, random

First hair cut, half lost to chemo

packages and checks arrive unannounced with notes of well wishes. Are we still drowning in medical debt? You bet! However, we always have gas to get to appointments, a full fridge, clothes to wear, toys to play with, and love from friends and family to keep us going. It took this entire 18 months for me to realize that God will provide, He always does, and to let go.

- Always challenge, always get a second opinion, never lose hope.
 Doctors really now how to stop your heart and give you a panic attack...and they are not always right! A couple weeks ago an Oncologist told my husband to stop questioning, stop getting second opinions, and just trust in the team they have at the hospital. If I had listened Gracie would have had brain surgery by now and possibly chemo when neither are necessary, that should scare you. It frightens me to pieces. If I did not cart her off to Standford and it all ended up being overkill I could never forgive myself. I say do the opposite of what that Oncologist said, always question, always get a second opinion, only trust when you run out of options.

- Some people just do not care. 
No, it is true. Some people do not care if you have two sick kids, if one is immune compromised and must stay at home, if you had to force yourself out of bed that day knowing it was going to be a horrible chemo filled day. They just do not care. You cannot make them care. I have been baffled by people using a phrase like, "Well we all have lives out of this but..." No. No. No. They just do not get

Our friend Sophie before she passed

it. You also do not need to have them in your life. Just move along.

- As hard as it is to watch other children fight and lose to cancer you NEED to connect.
Tears, oh the tears and heartbreak. Few things are as tragic as watching a a child suffer. The first few months at chemo I tried to go with my head down, do not make eye contact, I have enough to deal with, do not see the bald children. I was alone. So alone. Then I reached out to a Chemo Mom and felt normal for the first time in this whole journey. Someone understood. When asked how I am doing and I say, "not great" they know what I mean. We all need that connection to people who understand. It will not be easy, children will die, but you need that relationship.

Make a Wish

- It is not all bad.
90% of the time life sucks. But sometimes we get a normal day, a Disney trip, a Make a Wish journey. When you get those days they mean so much more then they did before cancer. You soak it up like rain on a desert. It is heaven. 

On Our Feet

Somehow we always land on our feet. Lord knows we have had some close calls but somehow we always get by just barely. My dear husband and I have been through more in our eleven years together then most couples experience in an entire marriage. Through it all our grip on each other only tightens, "Love will keep us alive." It was our song as high school sweet hearts but now more then ever it rings true.

Sometimes I see divine timing in such a clear way that I acutally laugh. Today was that day. This weekend Brad and I spent a lot of time taking care of his car situation. He was driving a car that was unsafe and unable to transport the children so we fixed that issue. For one whole day we had two cars that could drive the kids to appointments. One, glorious, day. Today I pulled into Brad's work to drop off Gracie and take Emma to chemo. I stopped the van and transferred Gracie from one car seat to the other, gave Brad a hug, tossed Emma a snack and turned the key. Nothing. I tried again. Nothing. Awesome.

Brad and I quickly transferred Emma and Cora to his car and jump started the van praying it would make it home with him and Gracie inside. If not we had local friends on speed dial to come to the rescue. I drove along the road I drive so often contemplating the timing in all of this mess. On our first opportunity to use Brad's fixed car to transport the kids that is exactly what was needed on that day. What a testimate to God's provision for our family!

Emma's immunity numbers were low today so she is under house arrest for awhile. I am really nervous that Brad will take off tomorrow in our only working car and then Emma will need to go to the doctor but I am stranded here at home. Car mechanics seriously need to make house calls! Please say a prayer that I can figure out how to get my van fixed this week without taking Emma out of the home...it seems an impossible task.

On an unrelated note our friends at Fitness Factor that did the car wash for Emma last year are doing one for Gracie this Saturday from 9:30-1. It is the gym on First Ave in Arcadia. A huge thank you to Kevin for organizing this for us, what a blessing! LA friends please make sure to stop by! I will give more details this week. Fitness Factor Facebook

Pride and Oncologist

"Pride cometh before a fall." Words spoken so often they are now a cliche. Why? They are true. We have been met with great and fierceful resistance by our Oncologist specifically but also by our Genetics doctor on referrals and second opinions. We were told outright last week to stop getting second opinions and trust the team they have assembled at Childrens.

The girls at Stanford

At Childrens they had Gracie as a risk for quadriplegic, brain tumor, cancerous death. The terms DIPG were tossed out along with suggestions that chemo might be in her future. We were told of brain surgeries that would remove bone that were necessary and needed to happen as soon as possible. So soon in fact that the Oncologist did not want us to leave the hospital with out talking to the surgeon on the day of the MRI.

They should know by now that I am a well educated, well informed, well connected mother. That I never do anything with out a second opinion, that I am not vague, that I will fight for my child. You do not tell me no. So I packed up the car and took my babies to the best doctor on the west coast.

Guess what. He was wrong. Gracie does not need to be rushed into surgery. She can wait and have another MRI in three months to see if there is improvement or not. She does not have a DIPG or brain tumors. She does have the same optic nerve tumors as Emma and other issues requiring therapies and tests and monitoring but she will not die or become a quadraplegic. The sky is not falling.

The American Girl store trip before appt

What if I had trusted in their team? What if I did blindly follow? Gracie would be undergoing an unneccesary and risky brain surgery. Not cool. Makes you wonder if there have been any other mistakes? Ya, us too. Stanford will be going through Emma's records and test results with a fine toothed comb. I want answers and I want them from the best.

You can bet that there will be a conversation at chemo this Monday and perhaps more.

Moving forward there will be more doctor appointments for Gracie. First to a very specialized eye doctor at Stanford to evaluate her optic nerve tumors, we are hoping she will not go blind like Emma. While we are there he will see Emma as well. Second, Gracie will begin several different therapies. Our hope is that her issues will become unnoticeable. Emma is also starting Occupational Therapy for her prematurity issues. The drive to Stanford is brutal. It took over four hours for us to get home. It will be really rough to cart the kids back and forth often but it is the best thing for the girls so it is what we will do.

To sum it up our trip to Standford was fruitful. It gave us hope, something I felt I lost several months back. For the first time in two years I feel like I have a chance of seeing all three of my children to survive to adulthood, that makes me cry happy tears. The war is not won but we have gained ground. You are going down cancer dragon. If God is with us, who can be against us?

Grace, By God

How do you keep going?

I am not sure. It does feel like some cosmically cruel joke that horrible situations like ours do not kill you. No, you must keep living and fight on. As much as I want to curl up into a ball and both cry and throw up at the same time tiny voices echo down the hall, "Mommy, I want to get up now." Time for breakfast. "What are we doing today?" Oh right, we need to do stuff...life goes on. I tell myself that I have the girls now, that they are happy and laughing and alive. That I must live. So I do. Each time life gets a little worse I try to find a new normal. I fiercely protect these girls and their childhoods, they will not be forced to grow up too soon, they will have fun and there will be laughter.

Why does lighting strike twice in the same family? No idea, you tell me. Seems like our quota for shitty things to happen has been filled...

I cannot bring myself to type out what we are dealing with for Gracie. It is on the Facebook page. I will say that we are heading to Stanford this Thursday to see the West Coast specialist for brain stem surgery. I will have more information after talking to him.

Thank you to everyone rallying around us, we need it now more than ever. The meals, the housecleaning, the fruit baskets...it all helps us live day to day. Right now I am having a hard time doing normal things like cooking and cleaning. My time is consumed with appointments, talking to different specialists on the phone, and trying to create normal days for the kids. It helps to have others to step in, if you message us and I do not get back to you right away just hang on, sometimes I get caught up with docs.

Yesterday was hard all around, it was not a good day to pick a fight with us or challenge...but that is exactly what Emma's Oncologist did. You messed with the wrong Mommy. Yesterday was not the day to lecture Brad. The fact that you said that we should not be getting second opinions on Emma's treatment or Gracie's surgery is mind boggling. The fact that you told him that Emma's surgery was a bad choice and wasted time is unfathomable. The fact that you told him that we need to blindly trust the team you have is negligent. You were wrong too, as you were saying these things to Brad I was with Gracie in Neurosurgery who told me that contact contacting the doctor at Stanford was not only the right choice but she would follow through on the referral herself. Then she called him right then and there to work us in this week. You are not special, I get second opinions from all doctors for my children before subjecting them to chemo or surgery, that is being a good parent. The rant you gave was unprofessional and uncalled for, are you really so confident in yourself that you believe you know better than anyone else in the country? Really? To say I am mad is an understatement. Consider yourself removed from the team as soon as I line up a new doctor. I needed to have that said because I know other parents read this blog who have sick kids. Do not let a doctor bully you. Follow your motherly instincts and do what you feel is best for your child. Be the Mommy Bear.

Gracie is a miracle since birth, she has overcome so much already. We named her Grace because she was alive only by the Grace of God. We still believe this to be true. I stand by Grace and Grace is by God. Amen.

Sister Like Sister

Another time my mother's intuition was correct when I truly wished I was wrong. The Oncologist opened the door, I could tell by his usually expressionless face that this was not good news. I felt the blood drain from my face. I tried to listen to the laundry list of issues he expressed and starred at the MRI results but all I could see is he was visibly shaken. The man we refer to as C3PO because he is usually inexpressive, unemotional, and robotic became at a loss for words and scattered. About a half hour later I locked myself into the Oncology one stall restroom to cry where no one could see me. Not fair does not begin to describe it all.

I do not have all the answers yet, Oncology and Radiology did not have all the answers and are sending us out to Neurosurgery as soon as possible. We were supposed to see them today but the main surgeon was called into the OR and we were unable to see her before she left. After her consult I should have more answers but here is the run down from today,

- Yes, Gracie has an issue that developed from her issues around her birth. We are being referred to the Reginal Center for more testing. We will not share this diagnosis publically and ask that you treat her normally. It is a mild case.

- Gracie has the same optic nerve tumors as Emma in BOTH eyes but much smaller. We do not know if they have become cancerous or if they are NF related and noncancerous, we will be seeing her normal eye doctor to compare eye exams from her exam in January then taking her to a pediatric opthamologist for further testing. If anyone has a contact locally or in the Bay Area please let us know.

- Gracie will be having brain surgery very soon. This is the part that we do not have many answers yet. It may or may not be related to her NF issues but she has an issue that requires immediate attention.

So like I said, all bad news today. I feel overwhelmed and at a loss for words. Many of you have asked how to help...I really do not know. I do know that I will be very busy with more appointments and phone consultations so any help with meals or kid play, busy work is great. If anyone has connections on doctors that may be able to help please let us know. We are willing to travel if needed but local or LA area is preferred since that is where we have help. Positive distraction is great too. Honestly I do not want to talk about this much so if I bring it up we can chat but otherwise please just distract me. Let's talk about positive Bible verses, God's provision, kid's clothes, homeschooling, holiday plans, gardening, anything but cancer and brain tumors. Last, please do not ask me what this means for the future...I don't know and I can't think about it. I have to live in the now.

I will update when I have more info. Gracie did great today, she charmed all the nurses! A huge thank you to Katie for watching Emma today and making us dinner!