Sunday, May 29, 2016

Hope for Emma

Many of you have followed us for nearly two years, you have prayed with us, cried for us, and helped us in so many ways. We love you all so much! For those of you who are new here is a quick synapsis of Emma's story,

Emma was diagnosed with Neurofibromatosis at the young age of 2, it made her go blind about six months later. Around the same time as she went blind she was diagnosed with cancer. She is now a cancer survivor at age 5 but for her it will be a lifetime battle. We go back to Stanford every three months for MRI scans and to meet with a team of 5 specialists. With NF1 once you have a tumor go bad on you it begins a war of keeping other pre-tumors from doing the same.

She is experiencing a whole host of PSTD like symptoms and even the Stanford child Psychiatrist is unable to give her a specific diagnosis or medication because she has "too many risk factors." We have already tried all the natural ideas from herbs to essential oils to special needs help like sound machines.

We would like to get her a Therapy Dog to help keep her calm at night and in public / hospital which seem to be our two biggest issues. Since she is blind we will work toward a Guide Dog for the Blind after we obtain Therapy Dog status. We believe growing up with this type of assistance will help Emma to assimilate naturally into the adult world and give her the most chance at accessibility. Sadly other do not see things the same way and Emma is too young to apply for a Guide Dog. We looked into a Therapy Dog instead and had sticker shock! Price tags of $15k-40k and 2-3 year wait lists.

Cute LuLaRoe clothes
The best thing for all of us is to take on the heavy lifting ourselves. We already have a breeder who is letting us have pick of the litter and meets the strict breeding requirements for Guide Dogs. I will do all the training with the help of local dog trainers who will come to our home to work with us. 

From my research I am expecting the puppy and training to cost a minimum of $5k. Our friend Kaleigh Clark set up a LuLaRoe fundraiser, the organization will match what we can raise so it will greatly help us while providing cute clothes for you and your little girls! Here is the link to the event. If it does not work for you just shoot me an email at and I can add
Kaleigh and her cutie, Jenny.
you using your email. You can also visit Kaleigh's page, LuLaRoe Kaleigh Clark Facebook. For those of you in the Central Valley we will be having a pop up boutique party at our home on June 11th in the afternoon.

I have had a couple of you amazing Emma warriors ask for a Go Fund Me link, I decided not to use them this time around because they take a significant cut of your contributions and I have a feeling it will be very difficult to raise enough money. We need every cent! Instead we are going to use our She's A Fighter page and Paypal so everything is safe and secure for those of you giving but also 100% of the funds go to Emma's puppy.

Here is the best part, Emma named the puppy Hope.

You can use this image to help spread the word!

Saturday, May 14, 2016

Greener Pastures?

Emma & Gracie on their birthday
I have not been on here writing much lately, it is not because I do not have anything to say...quite the opposite. I feel like I have to much to say and it is all mixed up in my brain. So here goes this crazy mess of an update.

Recently I joined an online support group of mothers of chemo and cancer kids. I wish I had joined years ago. The support there is amazing and although we celebrate and grieve with each other it is overall a good place to be. I joined a subgroup called "The Aftermath", we are all families post cancer who are trying to survive. It is a great place for me to ask post-chemo questions and get advice that does not have a medical or political agenda but at the same time it is super depressing.

Why is it depressing? These are all survivors, right? It is depressing because I am realizing that the post-chemo life is not as green of a pasture as I imagined. All these years we were pushing to get to this point. The point when we just monitor the girls and pray that we do not relapse. I thought that just because we were not going to chemo weekly I would have more of a "normal" life back. The pain and heartache would lesson. In many ways that was correct. In some ways it was not. I am realizing that this fight is never, ever over. I had someone close to the family say to me, "Do you still need to fundraise? She is a survivor now so how many expenses do you still have?" When I got past my hurt I had a great comeback...sadly I was already home and had no one to tell it to! Isn't that always the case? So here it is, my answer.

- We still owe thousands for her chemo. Although we have done several fundraisers to pay those bills down we still have some balances that are huge.

- Every three months BOTH girls see a team of 5 specialists from Stanford and get a list of tests including an MRI. Each time we drive there we spend about $100 on gas and copays and it takes at least 6 hours out of my personal workday since I work from home and cannot work while driving. Even though it is every three months the girls cannot always be seen on the same day and specialists only work on specific days so we typically get 4-6 weeks of down time between rounds of appointments and each girl needs to go there 3-5 times depending on which appointments they will allow me to but up to each other in one day. Just to give you an idea, an MRI alone after insurance is $6k. We get two MRIs every three do the math.

So here I am with this new support group of amazing women and it dawns on me, my life will never be "normal". We have a slim to none chance of fulfilling our dream to own a home in the next couple decades because our debt to income ratio is off the charts. I have yet to find a "start over" program that will allow us to start again at ground zero and try to keep up from here on out. Even if I did expenses are so high I am unsure it would help much. Drowning.

The only thing I can do is pray for better times, keep treading water, and try not to think too far into the future. Maybe someday things will look better.

The other thing I wanted to bring up is Emma's therapy dog. After tons of research we discovered that they typically have a 2-3 year waiting list and cost $15k and up. Clearly that is not helpful. I have her on a few waiting lists to get a "k9 buddy" which is a guide dog drop out but those waits are crazy long as well. After weighing pros and cons of each way to do this we decided the best course for our family is to do this ourselves. We are going to obtain a puppy that meets the strict breeding rules for a guide dog. We found a local trainer and we will start with the process of an emotional support dog right away. Those certificates are easier to obtain compared to others. Once the pup has that under her belt we will start the very long and rigorous process of training her to be a seeing eye dog for Emma. Most of you know she is legally blind. Although she functions very very well (most people do not know she is blind) her team is unsure if her sight will stay as she ages. We feel like it would be best for her to grow up with a seeing eye dog so it is totally normal to her and she functions as high as possible.

To make this dream happen for Emma we have a sweet friend, Kaleigh, who will do a LuLaRoe fundraiser for us. The initial costs for the puppy and beginning training and first shots etc will be about $2k. So that is our goal. The breeder we are talking to has a litter of Goldendoodles being born in the next week or two, we are hoping to pick from that litter and bring the baby home mid-summer. If you would like to help with this gift for Emma we would love to have any help offered.