Tuesday, June 30, 2015

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.

Wednesday, June 24, 2015

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!

Saturday, June 20, 2015


I might be one of the only people ever who is constantly shocked by the death of childhood cancer warriors. Call it optimism, call it survival...call it denial but I always believe they will pull through. I have visions of these children beating cancer and becoming doctors who find a cure, lawyers who fight for more funding and protect the kids, nurses who know from experience how to care for the sick, writers who inspire others, and parents who know how to help a child in pain. I see them go to prom, graduate from high school, and traveling the world. I envision that this time of medicine, hospitals, and pain as only a tiny part of their life story.

Then I get the call, the Facebook message, the status change. She's gone, in the arms of Jesus, out of pain. We have so many phrases to avoid the word we do not want to say...dead. Cancer took her. I try to remind myself that these lives, although shortened by cancer, had a huge impact. That they inspired, that they loved, that they raised awareness and funding to find a cure. I tell myself that she is with our Creator and resting. I tell myself this but it does not ease the pain. She's gone, cancer took her.

Now I glance at my cancer fighter and tears well up again. The reality that this can and most likely will happen to her someday. I cannot bare the thought. Cancer is not for the faint of heart.

Today a sweet friend of ours left us. She was an inspiration, a ball of sunshine. She would post cute little comments on Emma's page and her smile lit up Facebook. Her mother is gentle and kind, always willing to give advice and prayer. When I saw that she passed away I was totally caught off guard. I knew she was sick but somehow I thought she would pull through. I thought this most certainly was not the end. But the end came.

Cancer never gets easier. I feel like we are constantly sprinting up a steep hill. Even if we beat this I will always wonder if it will return.

This week Gracie has her MRI to determine if she has cancer, another brain related issue, or both. Amanda's death today makes it even harder to march into the halls of Children's tomorrow. Please God, spare Gracie. On Wednesday join us in prayer for her at 11am pst and please say a prayer for Amanda's family today.

Tuesday, June 9, 2015

Rainbows in the Storm

Lately I have been on a quest to create joy and normalcy in our chaotic lives. It is not easy to maintain a sense of normalcy when you have a kid with cancer. Life revolves around doctor appointments, sick days, well days, grumpy days, bad immunity numbers...You have to just go with the flow. I want to be happy, or at least I want to try. I started running and that helped a lot. I started sewing and that helped even more. I threw myself into the garden and creating an Outdoor School for the girls for this summer and that helped a little more. Sometimes when you cannot change the cards you are dealt you just need to reshuffle them and create a new order. So far our new order is making a happier Mommy and energetic kids.

This weekend Emma's auction wrapped up. I went into it hoping to do as well as Arielle and I did last year but honestly my expectations were low. I fully anticipated a flop. Not because we were not prepared, not because we did not have an awesome admin team...just because lately that seems to be the theme. Flop. Well it didn't! In the middle of our storm rainbows appeared everywhere. When the sun refused to shine dozens of women rushed to bring their own sun to us and the result was rainbows, so many rainbows.

Although the amazing amount of money we raised cannot buy Emma's way out of her cancer or chemo treatments it can pay for gas, food, living expense increases, babysitting so Mommy can catch a break, busy work for long car rides / hospital days and peace of mind for Mommy and Daddy that if a bill falls through the large insurance coverage cracks we have the funds to cover it. To give you an idea, last year we raised $1k and that was seriously impressive considering Arielle did almost the entire thing by herself! (she is a rock star). This year we did much better! What an immense blessing! When I told Emma that we had all this help now our little giver asked if we could get a present for her friend. What a pure heart! The answer was, "Yes! Of course we can!" What is the present? In three months from now we will run a similar auction for another warrior who needs help. So stay tuned for round two and if you know a child fighting a chronic illness in need of financial help let us know!

To the admin ladies, I cannot thank you enough for your time and energy in this auction. It would not have been possible to run this solely on the brain power I have left! It means so much to us that you took time to brainstorm, work the page, contact donors, organize addresses and so much more. We love you!

To all the donors, our hearts are full of the love you shared by you offering your handmade goods and treasures. We are so greateful for your giving hearts!

To the bidders, this helps us more than you may ever know. A part of the financial burden is lifted and for the first time in a long time I feel like I can breathe!

Wednesday, June 3, 2015

But if not...

Darkness closes in, all consuming, all surrounding darkness. I will fully admit it has been rough lately. To have one sick child is a nightmare, to have a second...well, there are no words to describe the despair. About a month ago my friend sent me an audio book to listen to on the way to chemo. Each week I popped a CD in and listened to an inspirational cancer survivor tell me how she found Joy even in the midst of cancer. Through her journey I have learned what Emma must be feeling some days but cannot communicate it to me in any way other than a whimper. She accurately describes the dark feelings, the loneliness, the pain, the sorrow. Things she says hit home for me in so many ways.

On Monday she was talking about a story we are all familiar with from VBS or Sunday school. Shadrach, Meshach, and Abednego. They failed to submit to the king's demand to worship him and instead clung to God's promise to protect. They were thrown into a firey furance to die a horrible death. Instead God met them in the furnace and saved them. God came to the rescue. They went into this death march saying, God can save us. But if not...

But if not? God can save you from death and danger but if not...then what? You praise Him still. The thing about those three brave men is they were saved, from death. However, they were not saved from a life of working for a mad man who once tried to kill them all. No, they will live out a life on the edge always wondering what will set him off again. They were saved by the miraculous hand of God but it did not solve all their problems. Yes, God could save us but if not we will still praise Him and cling to His promise to protect and provide.

This week as I pondered "But if not" I set out to do an online auction for Emma. A month ago when I was planning it with a group of an amazing women we hoped to repeat how well we did last year. We wanted to give Emma as much support as possible in her account to pay for all the expenses that pile up. Then Gracie got news that she was entering the battle field. Suddenly my need for this auction to do well multiplied. God heard our cry for help. The auction is still open for a couple days and we already tripled what we did last year. The blessing of these funds means so much more than anyone can imagine. It means we will not have to worry as much and we can focus instead on Emma and Gracie's health. If you have not had a chance to visit the auction yet please do, so rarely do we get a chance to witness God's provision in such a tangible way. It is truly a miracle. She's a Fighter