Karma

I have said for years that I did not believe in Karma. Can you blame me? No mother of a child filled with brain tumors wants to think somehow that was put on her for something she did in the past. How horrible. However, today I was chatting with another mom who is in this battle and said that I do believe in a smaller form of Karma. The kind that if I invest time and energy and resources into this extended family of childhood cancer and tumors that it will come back to me. Not always in the way that you expect but it is always just what you need. Some how we survive and I truly believe it is because of our Faith in God and our help from kind people.

Katie and I daydreamed up this plan to run the Disney marathon for a group of girls. That morphed into a conversation about how terrible the holidays are for families going through chemo and hospital appointments back to back. For two years our holidays have been taken over by brain tumors. It sucks. It is not a normal Christmas at all and it comes and goes but leaves this feeling of being "robbed". Last year I tried really hard to have a good Christmas for the girls. I started making and finding presents months ahead of time and set up fun activities for the whole month of December. We did have fun but we were alone. No family at all. That stinks.

Well not this year for our six girls. This year we designed an online auction to raise funds for these girls to have a happy Christmas, whatever that means. If it means toys that the family could not regularly afford because of high medical bills then it is toys. If it means a family outing that would normally have to wait for funds then it is that outing. If it is flying family out to the hospital to spend the holidays together, even if it is as a hospital, then it is for flights.

I am so happy to help these other girls! You may have noticed that both of our twins were in the auction, I did that for a reason. Gracie has her own set of tumors and challenges that earned her a special Christmas but I also wanted a little funds to let the girls play St. Nick to other kids. Emma, Gracie, Cora & I will be buying gifts or necessities for other friends that we could not get in the auction. If you know of a child who needs Christmas cheer, maybe he is inpatient in the hospital, maybe she just lost all her hair from chemo, or maybe you know another family with multiple sick children like ours. We want to hear about them!

Thank you for everyone that donated, played admin, and won items. It was certainly our smoothest auction, everyone paid on time and we had very little drama! Let's hope that continues as we get all these items mailed out!

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.

Broken

Emma started ballet this week

In so many ways I feel broken. Not just me, everything around me. A year of weekly chemo took it's toll by breaking everything. Broken.

In the most literal sense things are broken. The biggest issue is our baby bus. Driving an extra 5 hours every week, sometimes twice a week, put mileage on it. A lot of mileage. We are now looking at nearly 100,000 on this van. I jokingly say it is possessed but sometimes I wonder if we really should have our church pray over this car. Doors open and close on their own. I shut all the windows and lock the car only to return to it after a 20 minute Target trip with one sliding door open or two windows rolled down. My neighbor comes over to warn me a door is open, I am doing the dishes and the alarm goes off by itself. At a red light the sliding door opens, anyone want a ride? About every other month we are putting money into it to keep it going, it is all adding up fast. I was already mad at this car, no livid. Then yesterday my drivers side window broke in the down position in 106 degree heat. Nice. Chemo killed my car.

In a less literal sense I feel broken. A shell of the woman I once was. I find myself walking around as if in a fog, stuck somewhere between sleep and awake. My chest feels heavy, my stomach turns, my eyes cry freely and constantly. Broken.

I dream about packing up the girls and taking a few days at the Grandparents to recover. Then I remember the car issues, I don't think it would make it. Stupid car.

This week we had a visit to the NF specialist on the west coast. We discussed the girls future. I knew we would not escape ADD or ADHD since nearly all NF kids have those disorders but somehow having the doctor confirm that they have it hit hard. With all these appointments to keep we decided to homeschool the girls full time. Luckily my Masters is in Special Education so I can tailor their lessons to their needs. The doctor said Emma is ahead cognitively and doing really well with her education despite the last year.

We also discussed Emma's new issues. These panic attacks she has been having are not good. The doctor thinks she has PTSD, after some research I believe I do as well. How do I help Emma when I am broken too? She has always been such an empathetic little love, I try so hard to keep my own feelings calm to keep her calm. But my brain is freaking out, now she is too. Broken.

The one hope I have is that God heals the broken. I trust that He will put our pieces back together in His time. Until then I pray hard and hold on to the hope that one day I will feel peace again. Today I ask for your prayers. We have been fighting so hard and for so long that we need some help to build back up again. Please pray for peace and comfort for Emma and myself.

Freedom

Freedom. I feel like we are Prisoners of War finally released from our bondage. A year ago our future looked bleak. I imagined what it would be like to plan Emma's funeral. There were days I would grab her and sink to the floor sobbing at just the thought that I could not rip the tumors out of her brain myself. Now we have a future, I can make plans for her, for us. Freedom.

This week in the most literal sense Emma is going through a detox and slowly her body is returning to normal. Her hair is growing rapidly, her nerve pain in her feet happens fewer times in a day, and her chemo rage tantrums are happening less and less. Of course Emma was one of the rare children that becomes hyper from chemo treatments. She was bouncing off the walls after hospital trips and now she falls asleep easier and actually takes a nap in the afternoon.

She is detoxing in other ways as well. For so long her health was the center of the family dynamic, now she is closer to being a "normal child" then she has been in her recent memory. I see her trying to make sense of it all, I am too.

Now that we are off chemo it is inevitable that other issues will come fill the giant void that it once consumed. I find myself sitting in shock that she is legally blind. Of course I knew she was blind and needed glasses to see out of her only seeing eye but now that I have a clear head I am realizing my child is blind. She may never drive a car or do well at sports that need depth perception. Of course Emma can and will do anything she sets her mind to do. That is one determined girl. I am realizing it is time to research things to help children with low vision.  Although my MA is in Special Education I had only two classes on the blind. My focus was the Deaf and Hard of Hearing...anyone seeing the irony here?

Emma goes to the surgeon on Thursday. We will be monitoring her main tumor for more debulking surgeries to prevent it from causing issues like seizures. She will also see the Neuro Pediatric Opthalmologist to check her eye health and get a more accurate prescription.

Gracie also gets a break from Stanford tests and medicines but she will begin a party of different therapies as soon as I can find specialists that are not two hours or more away! She needs to get into Occupation Therapy, Speech Therapy, and Physical Therapy. Of course we live in an area where all those doctors do not take children.

This week was our first full week of homeschool and we took "no more chemo" pictures with the

same photographer who did our "before chemo" pictures last year. Next week Emma and Gracie start ballet! It has been a life long dream of mine to have a tiny dancer and I cannot wait to watch them twirl. For me it is a sign of normalcy, I can sign Emma up for a class with her peers. That makes my heart happy.

I am still not in a position to share publically what happened with Emma. So many of you wonderful friends and family members have asked gently what occurred. I wish I could talk about it, soon, just not yet. Just for now let's be happy that we are free from chemo.