the day Emma met Hope

Today we took a trip out to meet puppy Hope. She was a teeny little one week old ball of love. Her eyes were still closed. Sarah, the breeder, placed Hope in Emma's hands and we took this picture. As Auntie Andrea said, in that moment you can actually see Emma holding her future. Freedom, peace, love. All of that in her tiny little hands. Hope is so much more than a puppy. She represents a new life for Emma. Help navigating public places, comfort at night when she has her night terrors, a constant companion who will provide her friendship and love.

It means so much to her but mostly it means a lot to ME. For these last few years I have watched Emma suffer greatly. I have placed her limp body in the arms of surgeons, I have held her angry body as she goes blind slowly and does not understand what is happening, I drove her all over our state seeking the best care possible and 2nd / 3rd/ 4th opinions. So much of this has been out of my control. I could not perform the operation myself to make sure it was done right. I could not kill the tumor. I could not stop her nightmares. Most cancer moms or "Momcologists" will tell you that we feel helpless. We wish we could do more. Well now I can. I have a positive outlet for my energy. I will train this dog and it will help Emma. For once I have a real, tangible thing I can do that will have a lasting impact on my daughter.

Hope is named for what she is, she is hope to us. She represents all the hope I have for Emma in being a peaceful, mobile, and self sufficient adult. Thank you from the bottom of my heart for helping us provide this for Emma. It means so much!

Ways you can help:
- Prayer, this will take a ton of time and energy!
- Connect us with trainers
- Fundraise with us! We have a LuLaRoe party next weekend, info on our other blog post.
- Pass down dog / puppy things. If anyone has gently used doggy things we will happily take them for Hope!

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 throughemmaseye@gmail.com and I can add

Kaleigh and her cutie, Jenny.

you using your email. https://www.facebook.com/events/1189661174399590/ 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!

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 months...you 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.

Gracie

Sometimes I feel like my life is a passenger in a car that drives terribly in traffic, stop...go...stop...go. We live three months at a time not knowing if we will get tossed back into surgery and chemo. Last week we had an MRI for Gracie and yesterday we went back to her brain surgeon to discuss her results. He feels that she is still stable. We have three areas of concern we are watching, she has a shadow on her brain stem that may or may not be a tumor but right now it is not picking up enough contrast to be a huge concern. Her C1 vertebrae is still pinching her brain stem but there is enough spinal fluid getting to her brain that we do not need to surgically intervene. Last concern is her hypothalamus and optic chiasm, her right side is greatly enlarged compared to her left. It is causing hormonal issues and we are unsure if there is a tumor hiding in there making it appear large.

For now her team wants to just continue monitoring and put her in endocrinology for the hormone issues and physical therapy for her other issues. Since there are no local pediatric physical therapists we will be going to Stanford once a month and then I will be doing the exercises with her at home instead of going once a week. I am thankful she is able to avoid surgery and chemo but I must admit I was hoping for one or two issues to self resolve. It is so hard to live in this constant state of anxiety, unsure of what the future holds. If  our little warriors have taught me anything it is to enjoy the day you have today and never look too far ahead.

Thank you for all your continued prayers for Gracie. Emma is next up, on March 9th she has a minor surgery and an MRI of her head, spine, and pelvis. We are slightly concerned she might have a new tumor in her pelvis. It will be a very long day, starting in the OR and ending in the Imaging room.

On a positive note, Gracie's Make a Wish should be happening soon. We are still waiting to hear back on which wish they will grant and the time frame. I am hoping we can do it sometime late Spring before school gets out. That is a perk of homeschooling, we can vacation in the off season!

To a New Year

Like soldiers returning home from war we watched each other, unsure of how to react to the holidays. How do you celebrate Christmas with out doctor appointments, MRIs and chemo vomit? I will be honest, it was weird and I made it up as I went along! We established our own family traditions. One of the things I love to do is limit gifts from Mom and Dad to four categories, 1. Something you want, 2. Something you need, 3. Something to give, 4. Something to read. The girls had so much fun opening presents under the tree, they all had a hard time taking turns!

Although we were without family on the holiday we had fun doing our own thing. We opened

presents, got dressed for church, came home and cooked a fancy meal of smoked turkey, and played board games. The day seemed to come and go so fast. I am just so thankful to have a "normal" Christmas. I hope they do not remember the last two years when they are grown up.

The rest of the holiday season we have been busy doing our end of the year declutter getting the house ready for Spring and the flower beds ready for seeds. Hopefully there will be another crop of veggies and chicks for us to enjoy this year.

At the end of each year I reflect on what happened and what I would like to do differently in the next year. I think about everything from how to change our homeschool lessons to how to organize my pantry and all the way to fitness goals. This year I plan to do more field trips now that the girl's health is more stable. Emma has decided that running is super cool and wants to do a race with me so I am searching for kid runs she can do with me and have her start her own race medal wall of inspiration. She certainly has the energy and stamina to be a runner! I have four half marathons between January and June that I will be running then summer is a break to have my sister's wedding!

As far as the girls health this year goes we have a few big things coming up. Right before Valentines Day Emma will have another MRI and while she is under she will have a minor eye surgery on her blind eye. It is not tracking well with her seeing eye so this surgery will help her appear more "normal". The effects only last so long so she will have it redone in about two years. This time we are ordering a full body MRI. For the last month or so she has been complaining of leg pain. It is to the point where she limps around and falls to the floor crying. I am beginning to suspect that she might have some tumor growth in her leg. It is common for NF patients to grow tumors in their legs and arms along the nerve pathways. I pray that it is nothing serious and if it is that we can remove it surgically. Sadly it is the leg she has already had a surgery on as an infant. She will have some awesome war wound stories for that leg when she is older!



CHOC inpatient last New Year's

Gracie is doing fine, her last MRI was stable and she goes for her next one in about a month unless they bump it back. We are still watching the spot near her brain stem and praying she stays out of the OR. We are still searching for a physical therapist who is an hour or less away for PT. If anyone knows of a pediatric PT or one who is willing to see a child in the Central Valley please contact us, I am getting no where!

This New Year I must admit I was a little afraid. Last year we were hit SO hard that I felt frightened to plan or celebrate at all. Thank God we made it through with minimal issues. It all feels like yesterday we were praying she would make it out of CHOC but she was so very sick.

As we move into the New Year please continue to pray for the girls. The horrible thing about NF related brain tumors and cancer is you are never considered NED (no evidence of disease), you fight your entire life to keep the tumors from killing you. You have good years and bad years and fear in-between. I am trying my best not to live in fear of the next wave of bad and enjoy the normalcy we have at the moment. I must admit, however, I fear for our future and pray that a cure for NF is found soon.

Holiday Prep

Somewhere Fall happened when I wasn't looking. It is amazing how time flies by when you are not

on weekly chemo! The girls are happily decorating for Christmas and enjoying the fact that they can fully participate in festivities. Last year we were under house arrest or we were inpatient from chemo so we sat out on many things. This year Emma has already been to Disneyland, attended a birthday party, and been to church!

A few things have been happening in the background. We are waiting to find out which wish Gracie will get for her Make a Wish. She keeps asking me if we are doing it today! She is very excited. Emma got new glasses after we saw the Pediatric Neuro Ophthalmologist. It seems that her one seeing eye is getting better post chemo and we actually got to decrease her prescription! What a blessing.

Daddy and I have been running more races and working on getting healthy for this kiddos. His back is much better, he still has painful days but he is finally able to go to work and do yoga with me at night. I have seen a huge change for the better in myself. Not only do I look better but I feel better and that is a good thing because as I feel better Emma feels worse. She is really struggling with her emotions and hyperactivity. I feel so bad for her, she is so advanced she will say things like, "I am so grumpy and I don't know why!" It makes me want to cry. We are still waiting on Psych to see us at Stanford so in the mean time I have her deep breathe with me, do yoga, and apply her oils. Lately she has been asking to run with me so I am going to start taking her with me on a small loop at the

beginning of my run and drop her off to finish. If anything it will give her a good healthy outlet for all this energy!

Upcoming things: We go back to the Neuro Surgeon right before Christmas to check in and go over everything, he is the NF expert at Stanford. When we go we will be taking teddy bears from Trader Joe's to the hospital for all the kids who are stuck inpatient over Christmas. If any locals want us to drop off any new and unopened toys or jammies we can bring them for you! Next week I will be sending out the She's a Fighter Christmas boxes to Alanha, Adriana, Ariana, and Izzy. If anyone was planning on adding anything to their boxes please get it to us this week.

Normal or Not?

I spend many days pondering this question, is this "normal"? Am I seeing normal behavior from twins? Is this normal for a premature baby? Is this normal for a child who has brain tumors,NF1? Is this normal for a child who went blind at 2 years old? Is this normal for a little girl who underwent weekly chemo treatments for a year?

As parents we try not to compare. We try not to say what is normal and abnormal for a child and instead see the child on a spectrum. Ya, in a perfect world.

If I was a perfect mother I would never ask myself the normal question. But I am flawed and I ask that those questions above to myself several times a day.

For a child of her age Emma has been through so much. She has not lead an easy life. I argue with myself to give her room. But...

Life with Emma is not easy. She is easily angered and throws wild rages. She rarely sleeps and we have tried everything from essential oils to noise machines to light to no light to security objects. No matter what we try she is up several times a night. She turns on the lights, runs through the house, toilet papers my bathroom, empties an entire bottle of shampoo in her dry hair, and paints with toothpaste. I hide things and she finds them. We take turns getting up with her at night and directing her back to bed only to be met with an Emma rage at 3am. Now the whole house is awake.

I try to have her work out with me during the day and do yoga to center her but each thing I model and do with her I am met with fierce resistance.

So I spend my days asking, is this normal for a 4.5 year old? Will she grow out of it? Will it just get worse? As we wait for Stanford to get us into their Psychiatric clinic wait and pray and try to run off my frustration. I love this kid and the questions of normalcy just will not stop.