Reset

Sometimes in life we need to hit the reset button. Sadly the rewind button never works and there are certainly times I have wished for a fast forward. However, reset, that is button that you can use. For nearly two years we have been Emma Central. All things Emma related are handled here. We try to stop and play but mostly life is filled with appointments and hospitals. When chemo ended Emma and I were left staring at each other...what now? She would have nightmares, I would have nightmares. She would have panic attacks, I would have panic attacks. We needed a fresh start.

Any mother of two or more children under four years old will tell you the last thing they want to do is pack up those kids and go on a road trip with out their spouse. I knew the ride down would be horrible, perhaps something akin to Dante's Inferno? My need for a fresh start was stronger than my need to stay behind so I packed up the girls and hit the road. Four hours in I felt I made a horrible mistake. It was too late to turn back so onward to Los Angeles.

I am glad we went. I was able to get some time off to reconnect with my first life partner, Amber. We

Emma and Auntie Amber

have that special friendship, family connection that only comes along once in a lifetime. Sometimes it is the spouse you marry and sometimes it is your best friend and sister. We ran fast away from all five of our kids and escaped for a day. It was exactly what both of us needed.

The days with Grandma and Grandpa made me realize how tired I am at home and how much I do around here. Life is non stop in this home. It is hard without brain tumors and blindness and chemo. I will miss the grandparents and truly wish I could have packed them up in the car with us!

This coming week will be a busy one as well. Tomorrow is the deadline to submit donation information for the She's a Fighter Auction. This online auction will go to the girls for Christmas funds to make it a happy time. Future fundraising will go toward the families to help with bills and hospital related expenses. If you can donate anything this is the  form to fill out. The Auction will open for bids on Sunday and it will close with the end of September on Wednesday. If you cannot donate an item please come and buy an item to support the girls! Here is the link to the group page where the auction will take place, She's a Fighter Auctions.

Just Keep Dancing

My sister asked me what she could do to help. I sat at my cell phone with tears not knowing what to say. "I am hungry but I can't eat and I am tired but I can't sleep." Maybe it is from being strong for so long. Maybe it is all the extra life annoyances the last two weeks like the car breaking down or the transition as Daddy changes jobs. I am not sure what exactly it is but I believe it is many, many things that add up to this feeling of being "done".

I was talking to my friend the other day about our car problem. Little did I know that the day I was getting my car evaluated at CarMax she was as well. We have the same problem, chemo and numerous health related appointments put so many miles on our car so fast that the cars are breaking down. You are faced with an impossible choice of putting money you do not have into a car that will just keep eating money or try to find a way to replace the car. Sadly the cars are now worthless from the high mileage and still have a couple years of payments left. Both of our families are in the same position, we can't afford to replace the car. She said she vented to an NF support group and heard a resounding, "BEEN THERE!". It is not something you consider when dealing with our type of situation but apparently it is a common issue...and a huge one. If we do not have good and reliable transportation for our kids then we cannot get them to appointments and why waste money on a car money pit when it can be put toward the child?

This conversation gave me an idea so I am going to put it out there to the world, a chemo kid transportation charity. The charity would buy loved but still good condition cars, check for any issues, and clean it for our immune compromised kiddos. Then families would apply that either need transportation to get to chemo or had there car ran into the ground from chemo and cannot afford to replace it. People could even donate cars to the charity for a write off. So there is my idea, now someone who reads this who has money please make it happen and I will help! I even have the first family you can help, Jaxson, you get the first car!

In happier news Emma and Gracie had ballet today. It was so sweet to see them dance around and
laugh. What a brave teacher they have, a class of 3 and 4 year olds is no joke! Watching Emma today brought a little happiness to my very stressed heart. Life can be so cruel sometimes but she dances anyway. It is a sweet little lesson I am trying to teach myself, just keep dancing.

Surprised by Death

At this point in our journey I really shouldn't be surprised by death. But I am, every-single-time. When my friend Katie and I first discussed how to organize the She's a Fighter marathon running team we talked about each of us running for a specific child to make their Christmas dreams come true. I reached out to our friends and asked for referrals to parents and children who really needed a pick up, especially at Christmas. We found six little girls and moved forward with the project.

Two days ago I found out that Natalie died. She was on hospice, I should have seen it coming. I should have expected her to go home to God. Was I shocked? Yes. Maybe the chemo mom in me needs to believe that they will pull through, that this is just a bump in the road and things will turn around. Once I lose hope I lose everything.

I was in line at the drive thru Starbucks on my way to a co-op homeschool class with the kids. I

checked my facebook messages to make sure that the other Mama did not message me needing anything. Instead I found a message from Jenna, Natalie passed this morning. I sat in my car with tears running down my face, the girls in the backseat asking me what was wrong and why I was crying. I couldn't even bring myself to say it. That day was Emma's No More Chemo party. We were celebrating a huge milestone for her. One year of weekly chemo down and a three month break, we had happiness for the first time in a long time. I decided not to tell her until the next day.

I pulled up to the window and reached for my coffee with red puffy eyes and a tear stained face, "Are you okay Ma'am?" she asked. "No, I am not okay. But thank you." I knew Emma would take it hard, another friend we prayed for was gone. So much death for a 4 year old to experience. I cried the whole way to class then put on my game face for lessons and the party. The next day I told Emma and we held each other crying then released a balloon to heaven for Natalie.

Chemo might end, you could even win your battle with Cancer. Do you ever win the war? No. Once Cancer finds you life changes. Some of it is good; you live more in the moment, small things that would have created anxiety before are laughed off because you have bigger fish to fry. Somehow you develop a superhuman ability to withstand enormous amounts of pain and sadness and heartbreak. The negatives are too long to list. The tests, the needles, the tears, the bad news, the doctors who do not give a damn, the doctors that care too much, the waiting rooms, the unplanned ER visits, the inpatient stays, the hospital bag in the back of your car, the toll it takes on your own health, the damage you do to your other children from absence, the long list of medications you have to write every time you get a form for your child. That ends and you think life will begin again. Instead you are faced with nightmares, flashbacks, and fear of the future. A future with a child who is blind, needs extreme monitoring for the rest of her life, a child who will never know motherhood from her womb, will never know a life outside the glass walls for more than three months at a time, a life always living in fear that it could return to the hospital.

You might leave the hospital but the stories follow you home. Friends that are still stuck in that world. Children who die. Parents who struggle to keep their mental sanity at a time when most people would ask to be committed to the looney bin. You are at home but somehow you still "live" at the hospital.

I know this is a long and rambling post, that I do not have a clear point, that you may be somewhat confused why I am sharing this information. I share because I want the world to know that THIS is our life. This is how we live. It could get better, it could change. We need a cure, we need better medicine, we need more specialists with options better than chemo. We need more funding. What we need is people like you to care. Today it is our war but tomorrow you could join us. Share on your social media, be mad that Natalie passed away so soon, ask for more funding. #showyourgold

#showyourgold

Emma and I are doing better, both of us are still struggling with nightmares, panic attacks, etc. but now that it has a name it is easier to fight. This week we have been stuck in our tiny home with no car, the baby bus has kicked the bucket yet again. Cabin fever anyone? I have been doing extra involved homeschool lessons to keep us all sane.

We got her No More Chemo pictures back yesterday from the photographer. They are so amazing I started to cry! This is the same photographer that took Emma's before chemo pictures. I am astounded by how much she has grown this year and how healthy she looks being just one month out of chemo treatments. When you are in the fight you do not realize truly how bad it looks, once you can step back it is pretty shocking.

Does childhood cancer make you uncomfortable? It should. Before Emma was diagnosed I used to intentionally leave the movie theater during St. Jude's commercials ...it was too horrible to imagine. Then I was forced to live it. Be stronger than me, take a stand NOW. Look at these children and do something. Spread awareness and demand more funding. These kids deserve a childhood.

We might be done with chemo for now but our war is far from won. Emma will need heavy monitoring every three months by a team of 5 specialists until puberty. She will be on and off medication during that time and most likely there will be more brain surgeries. Although her prognosis has improved it will be hard to maintain a sense of normalcy during these years.

As most of you know Gracie also has tumors. Unlike Emma she has NF spots in both of her eyes. She will also need active monitoring to make sure those spots do not steal her eyesight like they did to Emma.

Between the two girls we will spend a lot of time at Stanford for testing, monitoring, surgeries, and medicine. Thankfully we have assembled an All Star team over there and I can rest easy knowing the girls are receiving cutting edge care. I just wish there were more options.

Fight for a cure. Right now it is Emma fighting, it is our war, but cancer does not care who you are. Let's stop it before it steals more childhoods. Go gold on your social media, if you have any contacts with media outlets get them involved, share as much as you can. These kids only get 4% of cancer funding. 4% is not enough. We stand behind St. Baldwicks as a reliable source for research funding. If you feel led to get involved please visit their possibilities for donations and fundraising. For those of you who are also ProLife you can rest easy knowing that their research funding does not use human stem cells.