Tuesday, September 9, 2014

So This Is What They Were Talking About...

It is not fair. I believe now that watching your child suffer might just be the worst thing in the entire world. Emma has now had two ER visits. Both for high fever and dehydration with other odd symptoms like having the runs and what appeared to be thrush. This visit ended the same as last time, with a doc shrugging his shoulders after several hours in the ER, "We just don't know but we know it is nothing too serious". Thanks. Not that they could do more, maybe it is a virus or a reaction to the chemo but the greater thanks, the thanks for nothing. Cancer ate Emma's life but then it became hungry for mine too. There is no way I could ever think about working again until Emma is much much better. Appointments, monitoring, last minute trips to the ER, phone consultations with oncology, paperwork (so much paperwork), dealing with bills...that is my life now. No time for anything else. Any extra time I find goes to the home, food prep, laundry, homeschooling, breaking up sibling arguments, bathing, cleaning and shopping for necessities. That is it. I know I am complaining, as I read this I am considering deleting it all and writing something less whiny. But it needs to be said and the world needs to know. It is not just the kid who suffers greatly, and she does suffer. The family suffers so much too. I can see it in pictures. I am not just tired anymore. It is an extreme fatigue that no nap or cup of coffee can ever touch. And it will not get better any time soon. So here we sit on house arrest from a compromised immune system. Where fun distractions disappear and I am left with my demons; cancer, bills, and my weakening emotional state. It is times like this I am glad I have a faith base because in this kind of darkness the only light powerful enough to shine is God's. There has to be a better way. Please, someone come up with a cure for my baby. The chemo is slowly killing us all.

Many of you have asked how Emma is doing, thank you for your kind words and inquiries. She is
okay. Any day we can be home and not in a hospital is a small victory. She is, however, acting like a kid on chemo. Tired, whiny, lethargic and sensitive to just about everything. Eating and drinking have become a battle. We have a daily battle keeping her hydrated. I have been searching for a drink that tastes good to her but she will only take a couple sips of anything I offer and ditch it. I have had to resort to bribery to get her to drink a glass of water. I did find that she will very rarely turn down yogurt so at least we have one food that is a win on a hard day.

We are making strides with the Cancer Can Be Project. Emma has a website now, www.throughemmaseye.weebly.com, for ordering a calender, nominating a cancer kid to receive a free one and becoming a sponsor. I am narrowing down the printer options and looking into shipping this week. I should have preordering up soon. If anyone is interested in offsetting the costs of giving the calenders for free to cancer warriors I am having you all pay our printer and shipping dept directly. This is not a fundraiser for Emma, it is a Pay It Forward mission. The only benefits we receive are the distraction of picture taking and the satisfaction we brought smiles to other kids in our situation.

A huge thank you to Persnickety Clothing Company for giving Emma a Princess Millie dress to wear and Livie & Luca shoes for sending Emma so many wonderful shoes to wear for our project. We are proud to support these amazing companies! They have big hearts and have shown us much love.

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