Sunday, April 12, 2015

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,

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