It Takes a Village

Emma's auction is now open, Auction link. This process has been so healing for me. When it comes to the internet I am typically a very private person. Before Emma's diagnosis I had thirty Facebook friends, by choice! Now I've opened my virtual life to a new set of amazing people and I feel so blessed. This auction has given our family so much love from selfless donations to generous bids. I am so glad my friend Arielle convinced me to jump.

The auction runs until Friday the 30th and I'm posting new items all week. Make sure to check in on your bids and keep an eye out for new goodies.

In Emma news, she has an MRI on Friday to determine the extent of the surgery needed. The risks of putting a child this age under are high and I'm usually filled with fear and anxiety for days before.

The last two times I did the embarrassing mom cry. I know the nurses are used to it but it makes me feel so helpless to break down in front of them at the MRI room. Please keep our Emma in your prayers this week and please add me, I'm going to need it!

Something Magical

Crisis brings out the best in a handful of angelic people but others disappear. Through Emma's fight I have watched friends, strangers and even family look away. I can see it in their eyes; the pity, the fear of it happening to their child and even the apathy. As hard as it has been to have this happen it has left room for something magical. Strangers, friends and family have come forward in amazing ways to help us.

I have seen more Godly acts in the last few months then in my entire life. Friends, family and strangers coming along side us to offer a helping hand. This donation was one of them. I contacted several companies sharing Emma's story and her auction. Most went ignored. This company responded to me right away and offered not just kind words but this amazing donation.

This is a company I watch online because we love their work and like to save up to buy an amazing

piece but also because they do giveaways on their page. After I contacted them about Emma I was scrolling through their news feed and learned that just a few weeks ago they did another amazing act for a hurting family. Here is the News Story

Companies that are kindhearted and selfless like this one deserve all our love and support. Please take time to like them on Facebook, Facebook. And visit their site, Elves and Angels Their work is as beautiful as their hearts!

We also had our church offer to make a payment toward Emma's medical bills. That selfless act sparked a charity at the hospital to take notice of us and we are now filling out the paperwork to receive their aid for Emma's MRI bills. It's been a battle and it will continue when we receive her surgery bills from UC Irvine but this is a huge step in the right direction!

To those who look away or disappear, I don't blame you. I know my kid makes you uncomfortable. She makes you fear something terrible could happen to your own child and perhaps this sad idea makes you depressed. Honestly, sometimes I secretly wish I could disappear from my own life for even 10 minutes or it turns out this all just a horrible nightmare and I will wake up. But it's not possible so we march onward hoping that beautiful people like the ones I mentioned will continue to make us smile.

Don't forget Emma's Auction starts on the 25th, we still have time to accept donations and make sure to come and bid on that beautiful kitchen! Auction

Mother's Day

Trying to coordinate three doctors at the same time for one appointment is a nightmare! If you haven't guessed yet our Care Council fell through yesterday. We are trying again next week. I will update everyone after it happens, if it happens!

There have been a few of you asking for the links to Emma's Go Fund Me account and auction set up by our friend Arielle. Here are the links, Emma's Go Fund Me and Emma's Auction

As we approach Mothers Day I reflect back to the very first time I held my babies. They were in the NICU with several machines and feeding tubes hooked up to their tiny three and four pound frames. A nurse asked me if I wanted to hold one, I sat down in a glider and she handed me the smallest baby I had ever held in my life. This little creature looked up at me, we locked eyes and suddenly she had my heart. I looked up at Brad and he snapped this picture.

That teeny little love is our Emma. Before holding her I was very concerned I wasn't strong enough for NICU multiples. After this moment I remember clearly saying to Brad "we can do this". I still say that today, we can do this. Emma was the first baby to make me a mother, it has never been easy but it has been rewarding. Being Emma and Gracie's mother has been my toughest job with the worst hours but I'd volunteer to do it all over again. So thank you to my three little loves, Emma, Gracie and Cora for making me a Mama and filling our home with love.

Happy Birthday Emma!

Miss Emma turned three this week along with her twin sister Gracie. We had a fun filled week to celebrate life and break up the constant in and out of doctor appointments. We had a fun party today with our friend Eli who also shared a May 1st birthday. Now before you start praising me for the amazing party I have to say, I had help. A lot of help! Eli's mommy, Katie, and I teamed up to throw one epic party and let me tell you, it was so much fun!

We also had a week of random acts of kindness. It began with a sweet lady who ran up to us in a Trader Joes. She had read about Emma's story online and offered us her prayers and a bouquet of flowers. We were so touched. We also had a huge donation of diapers and hospital snacks from our electric company. Yes, you read

that correctly, our electric company! TID was so moved by our battle that they gathered things to help and delivered them last night. I have never been so moved by a random act of kindness. We don't even know these people and they do this for us. It was beautiful. To TID, you all are amazing, wonderful people. Thank you from the bottom of our hearts.

Next up on the agenda is a care conference with all of Emma's doctors on Wednesday and another MRI on the 30th. We are moving to a new home on 24th, anyone who can help pack up the week before, help on the day of or cleaning on the week after that would be a huge blessing! We also have an auction coming up to help off set Emma's mounting medical bills. It is organized by our friend Arielle. She is gathering hand made goodies and placing them in an auction on the 25th - 31st. If you can donate an item please comment on the auction event page and we will get in touch with you. It is a public event so please share it and attend! Emma's Auction

Over the Hills and Through the Fields to a Third Option We Go...

We traveled across the state of California to UC Irvine hoping for a third option. So far the options Children's are,

1. Weekly chemotherapy with two drugs using a box that is surgically implanted under the skin so you have direct access to a vein. This treatment would continue for a year. About half of the children who undergo chemo for this type of tumor receive a second or third round because once you stop treatment the tumor begins to grow again. In order to get the tumor to stop growing you have to stop healthy cell growth as well. We are worried about what that would do to a three year old. There are also permanent damages to consider to her kidneys and liver.

2. Surgically remove the largest tumor that is wrapped around her eye. She would lose her eye and the surgery is risky (as in, she easily could die on the table from hitting an important artery).

So here is the update from today. We met with Dr. Tao of the Herbert a Eye Institute through UC Irvine. He is a doctor of Ophthalmic Plastic & Reconstructive Surgery and Oculofacial Cosmetic Surgery. He has experience removing these tumors and feels like he might be able to give us a third option, debulk the tumor without going too deep so she can keep the eye for now. This will reduce pressure which is causing her daily headaches and dizzy spells. Odds are she will need a second surgery where she

loses the eye in a year or two but it is short term fix for now. Other good reason for this option is we can test the tumor tissue to insure that it is not cancerous. Although it is rare for an NF1 tumor to be cancerous it will give us peace of mind to rule that out. 

Bad news is Emma is blind in one eye now. She can still sense light from dark but that's about it. Now we fight to keep her other eye and reduce the deformity that is increasing. I'll mourn that later but for now I am trying to focus on preventing total blindness. 

Next steps: we are taking Dr. Tao's recommendations back to Children's for a care council. Emma will have another MRI at the end of May, we will take that MRI back down to UC Irvine and if the tumor grows again we will move into surgery. If it is stable then we will give her a little more time. 

Moving forward we will need everyone's help and prayers. Any help with the next couple appointments would be wonderful. Also, our friend Arielle set up an auction to help us raise funds to help pay for Emma's medical bills which are quickly mounting. If you have anything that you can donate to the auction please comment on the blog and I will connect you with Arielle. We are also moving into a less expensive home to free up finds around the same time as all these appointments. We need help packing and moving. So, many ways to get involved! We thank you all for the help you have already given, the prayers and the kind words. Our friends and family have made this nightmare bearable. 

Looking for a Third Option

After Emma's last appointment we put up the "bat signal" for someone, anyone to help us. It's amazing how God works in wondrous ways. About ten years ago I had a friend in college with the

same major. We bonded through our classes and after graduating we kept in touch via Facebook. She read my blog on Emma and told me she works at UC Irvine now for a team that specializes in neuro ophthamology and orbital surgery...how convenient!

She arranged a consult for Emma on Monday when we will be in LA visiting family and after a few short phone calls the MRI results are faxed over and we are all set to see if someone else can give us a third option.

Here is my thinking, maybe, just maybe we can do a less invasive surgery to remove just part of the tumor so her eye can sit properly and the pressure is relieved. It might not be possible but that is what we are going to find out. If given the option
I would rather do a couple smaller surgeries as needed then chemotherapy or a big surgery where she loses an eye. If Emma follows the NF1 pattern her tumor will continue to grow at random times and increments until the age of six. For some reason at six years old these tumors tend to shrink on their own. I've never wished for time to pass quickly but this will be the longest three years of my life!

Marching forward we are hoping and praying for some answers or at least more options. Please keep us in your prayers as we travel down to LA and meet with this new doctor.

False Hope and a Grim Choice

Yesterday, honestly, it was a bad visit. The Neurologist told us last month that the tumor had no significant growth but it did grow. We spent a month in a sense of false hope. Emma's tumor grew 1mm on one side and 2mm on the other side. Although to his credit that is not "significant growth" it was growth in a short timespan of three months.

Here is one huge problem, Emma has a very rare condition. She has a NF1 optic nerve, stage one glioma that is causing prosthesis, meaning is is causing her eye to come out of the socket. Her tumor is wrapped around her optic nerve in a spiral like manner making it inoperable with out losing the eye. Her condition is rare, her type of tumor is rare, the fact that it is causing prothesis is rare and that it spirals around the nerve is rare. She is such a unique case that no one knows what to do with her.

Emma's doctors are revisiting the idea of chemotherapy but we have huge concerns about that treatment. I have mentioned our concerns before but here are some of the main reasons. In other cases it does not shrink the tumor and as soon as treatment stops the tumor grows again. Half of these cases must undergo a second round of chemotherapy. The bottom line is it is not proven effective. There is no cure, there is no treatment. Medicine is not comfortable with that fact so they want to push us into a treatment just to try something, anything. But this mother needs a better reason to pull the trigger other then, "it's the standard model of care". Sorry docs but I'm a pain in the ass. I will be requiring second and third options from other doctors outside your practice. I will be reading studies, researching what other countries do and (gasp) alternative medicine. If in the end chemo is the best option then of course I will jump on board. Never let it be said that this mother blindly follows doctors orders with out doing her research. Luckily our Genetics doctor is a mother herself and understands my stance. She is backing my choice to research more.

We decided to have a conference with all of Emma's doctors at the same time so we can ask all of the questions. Present there will be a Neurosurgeon, Oncologist, General pediatric doctor and Genetics Specialist. While we wait for that appointment to be set up I'm going to get another opinion from a new doctor and contact the Children's Tumor Foundation to see if they have any cases similar to Emma and what they did in that case.

As it stands right now Emma's outcomes are grim unless I can find something. We are not, thank God, worried about mortality but this is still a very difficult "stuck between a rock and a hard place" situation. I wish Emma was old enough to decide for herself. I wish I wasn't already so tired and emotionally spent but most of all I wish for a better option. If anyone reads this and can help us please contact me.

That's all for now, forgive me if I take a few days to respond to messages