Brave Mom

On my wrist is a bracelet with two words stamped on it, "Brave Mom". Not because I am already brave, sometimes I am, but more because it reminds me of what I want to be. Am I strong? Yes. But often in this cancer battle I wonder if I am strong enough? How much can I endure before I crack?

This week started with an MRI. The scans show a tiny bit of decreasing in tumor size but it is so small that it is in the zone of error. So this means the chemo could be doing nothing. That was a hard pill to swallow.

The next day we were gathering gifts to bring to Sophie. Then I got a text from her mother, Sophie already went home to God. We missed our window, she was gone. I got this news while Emma was taking a nap. When she woke up and asked to go see Sophie I told her through tears, "No sweetie, Sophie went home to God in heaven." She knew this must be sad because tears were rolling down my face. "Can I take her the balloons in heaven?" Then I really started to cry and told her no, that Sophie was gone. So we symbolically went outside and release the balloon we were going to bring to her that day into "heaven" and said goodbye.

Over the days to come I was on the phone asking for referrals for the next steps. One doctor I talked to said one line that has haunted me this whole week. We were talking about addiction and how I am worried Emma will become addicted to anti anxiety meds if we treat her with them now. He said that since the tumor will kill her anyway so are we really worried about her

Emma and Sophie

becoming addicted? Part of me knows he was right. But 99% of me screamed out in horror. No, no, no, we treat her as if she will live a long and happy life. My child does not have an expiration date.

It was a week of horrible, terrible experiences that no mother should endure and all in the same week. Yesterday I went into our bedroom to get something for Cora and fell to the floor in great heaving sobs. Uncontrolled rage and sadness poured out of me so violently that I shook. Naturally the girls came looking for me after 10 minutes and we all ended up on the floor in a giant hug. Emma wanted to know why I was so sad. All I could come up with is, "My heart hurts" she offered me a hug and a band aid. I must admit, they helped. Today I woke up from a night of terrible dreams looked down at the bracelet my friend Sarah gave me month ago that reads "Brave Mom." Good God, I hope so.

Release

Her favorite color was purple, she loved playing with her sisters, kites were awesome, penguins were funny, she sipped coffee with sweet cream. She touched our hearts lives there forever. Now sweet Sophie rests pain free in the arms of Jesus.

Unimpressed

It was a hop from one appointment to the other kind of day. We had the amazing Auntie Amber with us to help distract the children and keep everyone calm. She even came home with us to help through the night. Our friend Michiko dropped everything to bring us lunch! We feel blessed at this outpouring of love!

Yesterday was a little bit of a let down, we left our MRI with a general feeling of being unimpressed. I have yet to see the official pathology report but the preliminary readings show no significant decreasing.

Here is the short version of what is going on; we have been doing weekly chemo since August, the first protocol was working and we saw significant decreasing in tumor size in October. Emma developed a life threatening allergy to that medication so we switched to a new chemo in January. From October to yesterday her MRI shows no significant decreasing. To say I am unimpressed is an understatement. We are thankful it did not grow or spread or take her seeing eye. However, weekly chemo with no breaks should be doing more then just stability and it could mean that it is having no effect at all since her type of tumor goes through periods of great growth and periods of nongrowth. We had nongrowth on no meds at all! 

Next steps? I am gathering Emma's GIANT box of medical files and taking her to other doctors who can look at her case and tell us if we are on the right track or if there is a better option. Until then we

will stay in our current treatment and add cannabis oil once I get a doctor to prescribe it for her. We have two fundraisers coming up to offset the costs of travel and new doctor appointments, one in Modesto and one online. More on that later.

Please try not to ask us what this means for the future, that is too frightening to talk about right now. For now Emma is stable, she is here, she is fighting, she is smiling. That is enough for now.
Love from our Ohana to all of you, thank you for following us on this journey.

Walk By Faith

"I will walk by faith even when I cannot see." We certainly feel like we cannot see. There are so many things going on right now and I feel so out of control. I was just telling Brad that I have taken on so many projects for other people but I do it because it helps to fix other peoples problems since I cannot fix any of ours right now.

Emma is having a hard time. I think being brave for so long finally caught up to her and she is now a big ball of anxiety. We no longer have good days, we just have a good hour or two in a day if we are lucky. Each day it gets more intense. Her chemo symptoms intensify and her anxiety builds. Last night we reached a breaking point, lately she has been so anxious to sleep that she has accidents in

bed but last night she actually made herself throw up twice. We are seeing the child psychologist tomorrow and I am hoping we can come up with something to help her. It is really hard on her but it is also making life miserable for her sisters since everything now revolves around Emma's moods.

Emma's main Oncologist is pushing to extend her weekly chemo treatments with no breaks for an extra 6 months. He is a huge "follow protocol" person and I have never seen him think out of the box or search for alternatives. When I brought up alternative treatments last week he flat out told me he will not consider them until all our chemo options fail. Nice. He wants to do this regardless of her next two MRI results. I find this unacceptable considering the nightmare we live on chemo and now I am scrambling to find another hospital driving distance where I can switch Emma's care to at the one year mark in August. So far LA looks like the only somewhat local option and that is not possible weekly since it is 6 hours+ away. I am looking into San Francisco options. For anyone who can give us leads the facility has to be pediatric and have knowledge of NF1 related cancers for us to be able to legally move her. To say this is frustrating is an understatement.

On top of all this we have a financial nightmare coming in just a few weeks. Our living expenses are increasing dramatically and there is nothing we can do about it. I am organizing a community garage sale here in Modesto the 4th weekend in May and an online auction in end of June. I am hoping that these two events will buy us a few months at the new living expense rate until we can move to a new job with better pay. If anyone local can help with the garage sale or anyone has anything to donate for the online auction please contact us. The online auction items can be pretty much anything!

So not a happy post...all of this has been going on in the background of our lives for a while now but I try to stay positive if possible on our blog and page. I avoid complaining but right now I do feel like whining about our situation. I think sometimes the only nice thing you have to say is we are here, we are still fighting, we have a God who loves us. Amen.

Side note: A few of you have messaged us asking what Emma would like for her birthday coming up on May 1st. She loves getting mail so cards are great! She loves stickers, unicorns, Stitch, Minnie Mouse, Doc McStuffins, her favorite color is purple, anything that is wearing glasses, she is really into that Crayola Color Wonder paper, and lately she has been very into imaginative play so playing baby or doctor or puppy. If you need our address just shoot us an email, throughemmaseye@gmail.com

Easter

Happy Easter! Our girls just arrived home from Easter service and are taking a post egg hunt nap so I have time to update everyone on this week. Today we went to our church for Easter breakfast, a children's service and an egg hunt. It was the first year I saw all three girls really into the egg hunt but they did not quite get the idea. All three would find an egg,
open it, empty the contents into the grass then laugh and move on to the next egg. They left a trail of bracelets, candy and bouncy balls in their wake. It was cute to watch.

This week had highs and lows. As we near Emma's next MRI the chemo increases, along with that comes an increase in symptoms. We have more headaches, fevers, aches, numbness and just general feelings of ick. It puts Emma in a bad mood to feel so rotten and in turn that puts her sisters in a bad mood because she does not want to play and we have to stay home to allow her to rest. We had a fever scare this week and nearly took her to the ER, luckily the oils kept

her low and some rest did the trick which saved us a trip and tons of tests.We have chemo again tomorrow so sadly the cycle starts all over again. I will soak up the last few hours of happy Emma for today to get me through tomorrow.

Yesterday we hand delivered the first Fighter box to Miss Sophie. Cancer and essential oil use brought her mother and I together. We connected on many levels and lead similar home lives for our children. We just get each other. Chemo moms have a deep understanding of each other that no one

else, no matter how good their intentions, could understand. How it only gets worse and not better, how each day we are more tired then the day before, how we put on a brave face for our kids and cry ourselves to sleep when they are not looking, how each night that we do get sleep is filled with nightmares. You can just BE with each other, a look says it all, a single line gets your point across. It is a very deep connection. We crave these connections because so many people do not understand and our souls cry out to be heard. But these relationships come at a cost. When their children hurt, you hurt. When their children go home to God, you grieve. There were no words that I could say to

Sophie's mother, nothing to make her feel at peace or bring happiness. So we sat together and just talked about anything. Emma sat next to Sophie and held her hand, I saw them look at each other and my heart broke a little. It is all just so unfair. We need a cure. I am glad that we had a chance to bring the Fighter box, I actually saw a Sophie smile at one point and her sister Melanie was giving a busy box as well. Thank you for supporting the Fighter campaign, I am so glad we were able to bring a little sunshine. To Sophie we say to keep fighting the good fight and to #staysophiestrong

It was Easter vacation last year that we spent in LA with our family. Emma was still undiagnosed and her eye was causing pain everyday. We were lost and with out a name to fight. This year we are seven months into chemo fighting the cancer dragon but I consider us more blessed then the year before. This year we have made progress, we are beating that cancer dragon as best we can and living what life we have to the fullest. I hope that by next Easter I can say we are in recovery. Easter blessings to all of you out there in Emma's support network, may you feel God's love today.

A Week Of Busy!

Emma sends you Holy Week blessings!

Some weeks are not outright bad weeks but I still feel like we never have a chance to breathe! This week has been that way. Emma had a rough day at chemo on Monday. Her father and I try to give her twin sister special Mommy and Daddy days every once in a while to make up for the fact that she gets dropped off at other homes on chemo days every week. This week Daddy had Monday off from work for his birthday so he offered to take Emma so I could have a Gracie day. It was supposed to be a quiet chemo day, no surprises. Then I got a terrifying text from Daddy, Emma's port was not drawing blood. This could mean many things but ultimately we had two courses of action, try to thin her blood and try again or surgery to replace the port's tube. Gracie and I rushed home to be on the phone with Daddy and pack an inpatient bag for Emma just in case. Luckily two doses of meds and a whole other access of her port did the trick. It made for a very long day for both Emma and Daddy,

they got home long after bed time. After that appointment Emma kept fighting hives, I have no idea what is causing them but poor baby has been getting hives off and on for days.

We were also working on Fighter boxes this week. The goodies are arriving slowly and in several boxes, I have no idea why we got one order in dozens of boxes over a week when it was all from one place ordered at the same time. Seems like a waste of resources to me! Emma had fun putting the boxes together and picking last minute items with me to make them extra sweet.

To make our week even more interesting Emma had a dentist appointment. It was her first

appointment since chemo started and we were really nervous! We were warned when chemo started that it does terrible damage to teeth and many kids get cavities often. I held my breath during the exam hoping that I did not have to traumatize poor Emma with something else! We were very happy to find out that she has no cavities! She does have three spots with flaky enamel so they are prone to staining and will need extra brushing.

This week Daddy and I were also brainstorming ways to make financial ends meet. Next month two main expenses are increasing dramatically resulting in $500 more a month. We will also have many more appointments then usual for Emma the summer because she is starting behavioral therapy and getting end of chemo round 1 testing done. I cannot work because taking care of Emma is a full time job. We are thinking about doing another fundraiser to help with living expenses and offset costs in May sometime. If anyone has any ideas we would really appreciate the help. It cannot be a sell from home type of thing since I do not have the time and we cannot expose Emma to other people. I am considering another Facebook auction like we did last year with craft items etc.

Thank you for all your continued help and prayer, we are so grateful to have so many loved ones rooting for us!