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!