We Got Cabin Fever!

An Emma fly! Wings from The Dainty Warrior.

"I got cabin fever it's burning in my brain. I've got cabin fever it's driving me insane. We got cabin fever, we're flipping our bandanas" If you have never seen Muppet Treasure Island it is worth watching just for this song! Anyone with toddlers will tell you that it is hard to go anywhere but it is even harder to never go anywhere! Day three of staying home with Emma to protect her fragile immune system and allow her to get healthy is bringing us all a little cabin fever. Muppet Treasure Island "We Got Cabin Fever"

Today we are going to do some Valentine's day crafts to give to our friends next month and tomorrow we have chemo. If you are wondering about the timeline we have chemo again next Wednesday then

next Friday we leave for Hawaii. That is why we are staying home. I cannot risk Emma catching another virus before we leave and having a second family vacation in a children's hospital. I asked Make a Wish how they keep immune compromised kids safe on an airplane. I worry because the air gets recirculated and filtered but you cannot filter out a virus. We will be wearing masks but she is a three year old and pulls at it a lot. If any chemo parents have advice we would love to hear your ideas!

Last bit of housekeeping, we seem to be getting more public lately. I see this as both good and bad, but mostly good. We really focus on paying it forward so the more people who follow our story the more likely we are to inspire people to advocate for childhood cancer research, donate jammies or toys to a children's hospital, and help us give away inspirational calendars. The flip side is lately I am

getting a lot of spam. That is why all comments on the blog must be approved now and I watch the Facebook like a hawk deleting things. Sometimes I do not get to it fast enough and in that case please alert me. Also, I would like to state for the record that we DO believe in natural medicine, in fact, our family is very natural, we have a Waldorf home. We are an organic eating, essential oils using, no sugar, whole grain family. If you are selling a natural medicine or a shake or a food program and think it will cure my child's brain cancer I am sorry but you will only get a laugh from us and a polite no thank you. We did only natural for a year and in that year Emma's tumor grew and became much more serious. There is a time and place for natural medicine and we now fully believe that it goes right along side modern medicine for Emma. We do both and we feel comfortable with that choice, our doctors fully support that choice as well. I realize this makes some people uncomfortable but Emma's condition is very serious. We have not fully disclosed her diagnosis and we never will but we will tell you that is a type of tumor that if not treated aggressively will advance from treatable to a few months to live overnight. If you only get one shot to kill something throw everything at it! If you are itching for more details I wrote a blog post a few months back, "Natural Mom Confessions, I Chose Chemo".

A huge thank you to everyone who prayed for us in the hospital and a heartfelt we love you to Grandma and Grandpa, Leia, Katie, Andrea, and Sarah for going above and beyond in the hospital and arriving home. With out your help things would have been unbearable.

This Was Not A Vacation

Before the hospital

Understatement of the year so far, this was not a vacation. We left for Disneyland with high immunity numbers and a blessing from our doctor team. We had a full day here before Disney to rest from the car ride. We played with grandparents and had breakfast with friends. It was dinner when we knew something was off with Emma. I took her temperature and gave Brad the look. He just sighed, we knew we would never make it to Disneyland. An hour later we were at Children's Hospital of Orange County.

A couple hours later we were being admitted which started three days and two nights at CHOC. They ran all sorts of tests and checked vitals every two hours. The tests all came back negative and her ANC (blood count that represents immune response) kept declining. For me it was also concerning to see very labored breathing and low blood pressure. All we really knew was she was fighting something viral and had no immune system to fight it off.

Not happy :(

Daddy stayed with her in the hospital since baby sister needed mommy at night and she could not stay past 8pm. Neither of us got any sleep. On the third day her ANC numbers mysteriously quadrupled into the safe range. Who knows why, our team was baffled. They ran a few more tests then let us go home.

This was not a good start to 2015. I had so much hope starting a new year off right and on New Years Day we land in the inpatient wing...oh the irony. I'm disheartened, grumpy, and ready to throw an adult tantrum about missing my family vacation. Not cool.

Sleeping in the cot

The name of the game now is house arrest. We will be staying home with Emma until Hawaii. Hopefully this allows her numbers to go up and prevents her from catching anything new before our trip. If we do leave the house it will be in masks or for doctor visits. I said on the facebook page the other day that we could use meals this week. If anyone is willing to help with meals that would be amazing. We will be limiting visitors as well so please be understanding if you stop by and only I come out on the porch to chat. This will be hard for me this week because I tend to get cabin fever easily so please keep chatting online with us!

Cora in the Disney wing of CHOC, as close as we got to Disney

We also really need prayer, this was depressing. I told my sister yesterday that at least we were down here with help. Emma was going to be sick here or at home so I would rather have been hospitalized down here where Grandma and Grandpa could help us with Gracie. But it does feel like every time we try to do something normal we get pulled back into cancerland. It is a constant reminder that our child is sick, don't try to have fun because your kid will not be able to do it. One day we will get to Disneyland but it will be unplanned. I put the tickets in the car and next LA visit we will have one day with no plans, if everyone wakes up bright eyed then we will surprise them with Disneyland. I just can't do the let down again!

Leaving the hospital!

2015, Hope.

I am not sorry to say goodbye to 2014, in fact, if it was a person I would call him a jerk. In 2014 I watched my baby have four MRIs, each time being put under and stopping my heart with panic. In that year I held her hand before surgery, rocked her with stitches, and drove her all over the state for specialists and follow ups. I cried more tears then ever before in my life when we were told she had an aggressive cancer. We all fought depression, we all were left desperately clinging to God's promise to provide, and we all had far too many time outs to collect our emotions.

There was good to counteract the bad, the amazing church fundraiser, the car wash, and all the other little fundraisers we did online to help with medical bills and expenses. People we know and more surprisingly people we had never met offered to help with time, talents, and funds. We were approved for Make a Wish. We saw promising MRI results. We were home for Christmas.

I am very much ready to put 2014 behind us and move on to a new year. A year that we will start with family surrounding us and a trip to Disneyland. A year that will have Hawaii and birthdays. A year that I hope we will beat cancer's tushy and send it packing.

I have so much hope moving forward so I would like to name 2015 the year of HOPE. Let's all take a moment to pray that hope is what we seek and hope is what we find.

Good night 2014, hello 2015.

And That Makes a Year

Emma & Daddy last year

A year ago today I sat in a waiting room praying for my baby who was in an MRI. We didn't know what was going to happen, I only knew that her eye doctor saw something behind her eye at her appointment and whatever was responsible was pushing her eye out. I prayed not knowing what to pray for, do I pray that it is a cyst? Do I pray that it is removable surgically? Do I pray it is not cancer? Instead I prayed that God would give us strength to handle whatever it is and how ever long it takes. A year later that is still my prayer.

No one wants to be told your child has a brain tumor, no one wants to be told she actually has a total of six brain tumors and no one wants to hear the words "inoperable" but that is exactly how we spent Christmas Eve last year. The next day, Christmas day, Brad and I spoke in hushed tones about Emma trying not to project too much into the future.

A year later we have seen three more MRIs, several tests, a surgery, glasses and weekly chemotherapy. Our lives are dramatically different now. In many ways I feel stronger and in several ways I feel beat to hell.

2013 Christmas picture

Although this Christmas we were still in the hospital days before I count us blessed in many ways.
This year we have a name to fight. We know what she has, we know the survival rates, we know the drug protocol. There is freedom in knowing. If anyone reads this who is still in the testing phase and you are afraid to know the diagnosis remember me saying this, there is freedom in knowing. Not knowing causes those panics in the middle of the night, the "what if" panics. Your mind can wander to even worse conclusions then reality. It is always better to give your monster a name.

This year we were also blessed with help. Amazing people and organizations have sent Emma things to cheer her up this Christmas and help for the family. We have Disneyland to look forward to and Hawaii through the Make a Wish foundation in a month. Those things keep us going and looking forward to happier times while we sit in the Oncology department getting meds.

Yes, sometimes...no often, I wish this was not my life. That it was all a horrible nightmare and I will wake up on Christmas last year with three healthy children. That I will tell Brad this horrible dream over coffee and he will reassure me that it never happened. Not to us. But I know that is not true, this is our life. This is what we fight. Everyone has monsters, some are big, some are small, some are

Our family this year

invisible to everyone but he who fights him and some monsters win. Our monster is Cancer and we will fight and we will not give up.

I know this is not a very jolly post for Christmas Eve, it is a much more sober Hallelujah. A Hallelujah that we are still here fighting and we have happy times ahead in the very near future. "And Love is not a victory march. It's a cold and it's a broken Hallelujah." Jeff Buckley

Whispers and Gossip, We Are "That" Family

You can't hear the conversation but you know they are talking about you.

"That's the one with cancer, poor baby."

Yes, that's us. "That" family.

My friend shared a blog post with me recently where a woman talked about her experience with others talking about her rather then to her in regards to her breast cancer. So much of it hit home with me. It is hard to be the person others talk about. Most of the time they mean well, the statements are of concern for our well being, asking for updates but not wanting to bother us or trying to find a way to help. Sometimes is is downright mean and hurtful gossip. We luckily, have had more of the first then the second.

Margaret Feinberg said this in her blog that really helped me, "So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift. And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that."

So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift.

And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that.
- See more at: http://margaretfeinberg.com/others-whisper-gods-truth/#sthash.IpcmbfMG.dpuf

So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift.

And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that.
- See more at: http://margaretfeinberg.com/others-whisper-gods-truth/#sthash.IpcmbfMG.dpuf

So the next time you hear the whispering, know that you can walk away. Sometimes unknowing is a gift.

And the most important whisper you’ll ever hear, the only one worth straining to hear is from your Heavenly Father who loves you, who is with you, and who is for you. And over the last year and a half since my difficult diagnosis, I’ve learned that.
- See more at: http://margaretfeinberg.com/others-whisper-gods-truth/#sthash.IpcmbfMG.dpuf

I was having a nice conversation with a very dear friend the other day. Our children were all taking a nap and we were enjoying talking about something other then pee pee in the potty and Elmo. This was one of the things we discussed. I have always been the one to take care of others. I am the one who brings meals or groceries, cleans other people's homes, donates, etc. Not because I am better than anyone else but because I feel lead to help. I am that person that insists it is okay to let me come over to help if your house is a mess but I clean before you come over. I will never expect you to feed me while I am there but I will force feed you home baked scones when you come to my house.

Last year the tables turned. We were the family that needed help. With watching Gracie for appointments, with meals, with finances, with prayer, and with functioning day to day having cancer. When the tables turned I found how hard it is to be on the other side and accept help. It feels depressing being the "charity" case. Being the family others rally to help.  It is not a happy position to be in temporarily but for a year it is a hard thing to accept.

This year I have learned to accept help and I have learned to let people see my life when it is messy. I have learned how to be specific when people ask how they can help. I have learned that the people that whisper about you behind your back 90% of the time mean well and what they say is none of my business. I have also learned that 10% of the time what is said is false and very hurtful but also none of my business.

I have learned that we cannot please everyone, we seem to be too holistic for some and too mainstream medicine for others making everyone mad but that is okay. It is okay because Emma is OUR child and we are the ones prayerfully considering her care with her team of medical professionals. I have learned that we will never be poor enough for most financial help but we will never be rich enough to pay all of Emma's bills on our own.

I have learned that although Emma is immune compromised she is a child who needs to run and play and interact with her peers. I cannot protect her from everything but I can arm her as best I can. Most of all I have learned how powerful I am, what great depths of grief I can sustain for so long and still function. The amazing, awesome, wonderful power of God that keeps me getting out of bed each day with a smile for Emma. This coming year I hope to learn how to slow down, stop with the busy, rushing around. I want to let myself be happy. If we come out of this I do not want these years lost to sadness and grief, I would like to see that we were still joyful in this time.

The blog post I mentioned is by an amazing author who I find very inspiring, here is her Facebook. This picture pretty much sums up her amazing outlook on life. She found joy in cancer and I hope to as well. Margaret Feinberg

It's Beginning to Look A Lot Like Christmas

When I picture the holidays I see Christmas cookies, and decorations, a brightly lite tree, stockings hanging waiting for Santa to arrive and family. When we cancelled the LA trip because of the weather we lost our Christmas with the family, although we will be there for New Years somehow it doesn't feel the same. I am happy and grateful that Brad and I have our own little family and our own little traditions to embrace. I filled our weekend with Christmas cheer and we have continued it into this week. We

decorated a gingerbread house, made shortbread cookies, practiced for the church Christmas pageant, went for a Santa visit and created some new ornaments for the tree.

This break from Emma's chemo treatments has been good timing. The weather became very stormy and our four hour round trip drive to the hospital may not have been possible! The Central Valley is not structured for heavy rain...or rain at all! If we get an inch of rain everything floods. I get nervous driving around here in the rain because drivers here do not know how to navigate in water. We lived for a long time in a place that got regular rain so I am used to it, these drivers are not! I cannot tell you how many cars I have witnessed sliding along the freeway out of control or stalled. Our next chemo visit next Monday so until then we are playing around and getting ready for Christmas day.

I have more holiday fun up my sleeve for this week but tomorrow we will take a break from it to mail out our Cancer Can Be calendars which we picked up today! I am so happy that we can share this project with our Cancer Warriors at Children's! If you have a childhood cancer fighter it is not too late to send him or her a calendar. In fact, we will send them out until January 31st. You can contact us through the blog, her Facebook or our email.

But We Wear A Smile

I teased my husband yesterday that the city slogan for Modesto should be changed from "Water, Wealth, Contentment, Health." to "Modesto - You Are Here Because You Have To Be." All joking aside the Central Valley has a few things going for it, the culture is very Christian and loving, big cities are driving distance, and the weather is mild. Until this week. The perfect, predictable weather of the Central Valley and LA area is about to get crazy. Weather forecasters have predicted moderate weather for Monday - Wednesday, possible rain on Thursday but on Friday they urge you to build and ark and gather two of every animal. Flash back several months to our friends at ABC News asking us if they could send us to Disneyland this holiday season. We found a small two week pocket of time where Emma would be allowed to travel before the tickets expire. I turned to Brad and said, "Are we tempting fate trying to go to Disney in December?" We both laughed and said, "No, it is LA!". Flash forward again, RAIN, big rain. On the day we plan to go to Disneyland. Sigh...there is nothing we can do to change the weather besides a funky rain dance to try to bring it on early so we are packing rain coats and umbrellas. We are just going to go and try to last as long as possible.

This week Emma did not have chemo but she did have to go to the hospital for a check in. Her numbers were good and she was cleared to travel for Disneyland. We were also told that during RSV season Cora (her younger sister) will not be allowed in the clinic. RSV season lasts about 2-3 months and Cora is a very clingy breastfeeding baby. She is the type of child to scream if I leave her and make herself throw up. Even if I found someone to watch her near the clinic I would still need to leave Emma to go nurse Cora and when I leave I have to have a legal guardian with permission to treat with Emma. This was a huge problem. I called a meeting with the manager of the clinic and our social worker to try to figure out a solution. The manager was trying to brainstorm for me and asked, "Don't you have any family members who do not have young children who can come help you on chemo days?" I broke down

crying. It was not her fault, it was my lack of family. It touched a nerve. "No, just me. Sometimes my husband but he is out of sick and vacation days." I could see the pity in her face. I knew she felt bad, she was just the messenger.

When you look around a chemo clinic you will see a child with a pair of adults typically. Usually a grandparent, sometimes a second parent or an aunt / uncle. Rarely do parents go alone with their child and even more rare is what I do, I go with two children each week. It is not the path I chose but it is my reality, I make do each week trying to just take care of one day at a time. This RSV thing threw a wrench in my system. After a long talk and some tears I left to talk to my husband at his work. His boss was very loving and totally understood our dilemma. She is allowing Brad to leave for a half day once a week to help with Emma's chemo but those hours need to be made up elsewhere which means even longer days for Daddy. Most days he is gone before breakfast and home after the girls have had dinner. I hate to think how much longer his day will become.

I am sharing this with everyone because chemo moms wear a smile. I had a friend say recently, "But you always seem so upbeat and positive!" When you see us we are distracting our children with bubbles and songs. We carry everything on us to make it easy to give medications, do temperature checks, and paperwork for emergency trips to the ER. But we are human, we hurt, we put the kids to bed and throw tantrums in an empty room yelling to God, "WHY?". Most days I feel on the verge of a nervous breakdown. Cancer broke my heart and God is slowly putting the pieces back together. Being a chemo parent is so much harder then the other roles I have played as a NICU parent, twin mom, and mother of three kids under two years old. This sucks. I feel so alone most days, even when surrounded by church and friends. Being a chemo mom is lonely. For at least the next couple months I will not wear the chemo day burden by myself and I will have my husband at my side.