That feeling.

I wanted to write a 5 year post dx blog last week. Then I didn't. Then I wanted to for sure do it this wkend. Then I didn't. And so I am trying to sit down now and finally put words with the way I feel. It is interesting bc I feel both removed and also covered in the same sort of feelings.

5 years ago seems like a lifetime. When I think about the things that we've done since then, where we've been, who I have known, who I have lost, who I have kept, and who I have gotten rid of... the places we've been - the vacations and road trips. The time we have spent at soccer or dance or girl scouts...

...I *almost* forget about the years that we lived in the hospital. The once a month stint of days pumping chemo into my 2, 3, 4 year old. The 2 weeks after that when Reese inevitably got a fever with a zero ANC and had to stay in the hospital for a few more days. The passing around of children between me, EJ, my parents, friends so we could get to where we needed to be without leaving Reese ever alone.

I almost forget about the bad coffee inpatient, the fear of eating the hospital sushi, the runs down to the cafeteria at 10pm while R slept so I could finally eat for the day. I almost forget about how I would watch Everybody Loves Raymond, then Friends, then King of Queens on TV every night that I spent Children's because it was my timeline of how late it was while I watched Reese finally close her eyes after a stressful day.

I almost forget about her encephalitis while I was 38 weeks pregnant with corbin - or her sepsis a few months later.

I almost forget about Reese not walking. At all. The years she didn't walk. The amazing granny walker that she finally used to get everywhere as opposed to scooting that I still have in my garage is some of my favorite times in our journey. Bald Reese, puff head Reese, spike hair Reese, bob hair Reese, and now she needs regular haircuts.

Now we wake up and take meds, get ready for school, and send her off for a day on her own with the most amazing teachers around. She goes to parties with her friends, she does her homework, she takes care of her sisters... but she prefers to still sleep with me. She still fits on my chest in my arm nook the exact same way that it did when I would rub my face on her hairless scalp. She gets bigger, but apparently that space does, too.

I don't know if I really have anything poignant to say except that I haven't blogged first day of school pics, didn't write about our trip for our 10 year anniversary to vegas, haven't put down all of the amazing photos of daily life that I usually do and it makes me feel sort of stressed inside. I have to get better at that again. Kids getting older seems to be the goal when you're in the thick of toddlerhood for so many at one time - but older kids brings so many more time consuming events. I have been really trying to savor the hour (lol) at night that I get alone-ish. I am trying to let go, catch up on tv, drink some wine and chat with friends...

Regardless, I will catch up on those things I have put into a folder to post eventually. Corbin is home from school because she hasn't been feeling well, Miller was home last week for the same germs. Aidan has a broken wrist and thinks she broke the thumb that is already in a cast, but I tried to wrap it last night and apparently made it hurt worse. Sawyer lost her mind this morning because I had the wrong fruit bars for breakfast. Reese was mad bc the rest of the kids wouldn't wake up quickly enough and she had been coloring at the kitchen table since about 5:45am.

5 years ago, I was hoping to see today with Reese. I was praying that I'd have a fight over her hair and whether or not she needed a jacket. My next 5 years will be full of different types of worry, but for now her meds are working well and so, like I usually do, I will relish in that feeling and wait 2 more months for the next scans.

Reese's FB page: www.facebook.com/gingerfight
Instagram: www.instagram.com/theskelteseven

another year passes.

In 2012 we went to scare on the square.

I was excited that all the girls were dressed in their super hero costumes, but reese was still so sick. She had been to the ER, they said she had UTIs, I was not very content in that answer, but I am not a doctor, so I guess I was wrong. She slept all the time. I barely got her awake to put on her costume. Her right arm ("bad arm") had been not working for months. Doctors sort of gave us lame answers - like saying she broke it (even had an x-ray!) and putting it in a cast. Maybe radial nerve? Maybe should get an MRI? but she had been throwing up so much that we could never get her sedated. I find it ridiculous that none of these things added up for any medical professional, but it wasn't in our time - it was in someone else's hands.

Downtown, I know now, that people saw her eyes act strangely, then, but didn't know how to tell me. It doesn't matter, of course, because when EJ saw her eye float later, they went to the ER... again... to finally get a CT scan.

Thus began the worst days of my life.

Everyone stepped up: friends, family, strangers. We were instantly surrounded by doctors and nurses and sanitizer and fear, but also by love and prayers and warmth from all over the world.

When we got there, she was actively dying in a way... as she had been for days. Her heart rate was somewhere in the 30's and 40's. She was barely responsive. The fluid in her brain was so much, but even that day she would have times of totally "okay", so as a parent it seemed insane to think it was so bad inside.

...but now we are 4 years later.

She had to get another haircut the other day bc it was getting so long and needed to be evened out. This year, the girls were "decades" and we went to scare on the square to dance the night away with our very best friends.

We are oddly in a same type of waiting space as we have been before. Only, this time, instead of wondering what we are working with, if she will need more surgery, asking naive questions about chemo, checking to see if her body will handle her own pituitary functions... we are just waiting on a new medicine to be (hopefully!) approved while we go to dance, have dress up days at school, laugh at the dinner table, cuddle at nighttime.

4 years is a lifetime. I look back on what we've done in 4 years and am so grateful to have so many friends be by our side along the way. Here's to many more halloweens filled with dancing and laughter and love.

another stable day.

It took longer to say hi to me this time at clinic after the MRI. This, likely has nothing to do with me and more to do with being busy with, ya know, other people. But it sort of made our hearts palpitate a bit more.

I called EJ and he felt like he needed to leave the office for a bit - which is weird bc he never gets anxious about MRIs. Or, rather, he doesn't tell me that he is. So, this sort of sent me in a nervous spiral until finally they came in and said the sweetest word of STABLE.

Now, our stable is sort of different than other stables, maybe?

Reese's tumor moves all of the time. Sometimes smaller one way, and bigger another. And then the next month will be opposite. Sometimes it will shrink and then fill back in. Sometimes it won't. We look at similar slices every month so we can get see what actually is moving and decide if we want to stay on vinblastine or not. But again, we do.  (don't judge size by my terrible outlining down below).

But you can see that generally its not a huge difference - and that we can push time on vinblastine even longer - which is essentially the point for now. 

If you remember what her tumor looked like when we first came to the hospital halloween 2012 and also december 2014 when we started this regimen - this is still good. 

I get a lot of questions about "well what will you do next?"and that answer is the inhibitor(s) that are used for her BRAF mutation (v600e for my fellow momcologists). That is a daily pill for something like 2 years, assuming that it continues to do it's job for that long. 

Next MRI is in 3 months - which is forever away, of course, but when July hits, I will feel as if we were just here. 

Follow daily on instagram. and always comment or email w any questions. 

about others.

My [friend's] kid just got diagnosed with a brain tumor....

I sadly, so terribly unfortunately, get that message about 1x a month. Can their friend message me? Anything I can say to them? What should they do? More often than that, I get messages that their friend's children were diagnosed with another form of cancer and they want to know what to bring to the hospital.

These messages are never a bother. They are so welcomed. I consider the fact that they came to me such a compliment of sorts. It isn't a compliment that I necessarily want to receive, as I wish I knew nothing of the subject, but it is one that I take, anyway. The people who message trust me enough with their hearts and emotions to invite me in to their private lives.

I say a lot of the same things to friend's of the one dx. I list PJs and blankets. I say to bring them food or give them a visa GC. I remind them to DO things instead of ASK what they need - a maid, a child pick up, a hug. But it is when they add me to a message with their friend - or when I finally say "hi" to a new mother whose world has been thrown upside-down, that I can see who I was. I can see how far I have come in many ways - and also how time does not change things.

I notice so quickly how these mothers adapt. Three years ago, I was that mother who felt as if they were in some sort of cage where no one could see them; no one could understand. Everyone just looked in with this face of "oh. oh dear." Tears in their eyes from absolutely sympathy and love, but they were still on the outside. I had a few people around that understood and really that is all that I needed - someone to say "yes. I know." And now I am that person. The blessing of it all is watching how they grow and change. Scared mothers who then throw medical dialogue around, as if it is their native language. They list of procedures and talk about medicines like a nurse studying for a test, but they are moms like me.

I have had one minute conversations with people who had a question about chemo or a test. I have talked to people for hours just about nurses or hospitals or "what would you do?" All of this goes both ways, as we need each other.

...But I also have spoken with mothers into the darkness of late nights about their child, only to, months later, pray into a puddle of tears as their child takes their final breath. I am so grateful that they let me into their lives for that tiny sliver of time - and even more grateful when they let me continue to stay in it with them.

I talk to friends of those mothers, who just want to understand. Sometimes they come asking medical questions that I try to answer as best as I can. Sometimes they feel desperate to help them - and the only thing I can do is say to love them. That is often the hardest thing to explain.

All of this reminds me how much our journey is about others. We are not in a cage, alone, we are part of a community where we all need someone, all on different levels. I may go into scans or chemo differently than I did winter 2012, but that does not let me forget how it felt. Those feelings never go away. I don't mesh with everyone perfectly, as we are not all on the same road. Sometimes when people post things on pages, I don't understand those feelings at all. Some people are angrier, some are more hostile, some are off treatment to likely never look back. But they all have "people", too.

I was taught, early on, through other mothers' kindness and love, that it is important to take our own struggle and turn it into strength for someone else. 

Thank you for letting me be that person for some of your loved ones - even if just for a moment of time. Because no matter how much time goes by, I will never forget this face days before diagnosis. I will never forget the fear I felt not knowing what was going on with my child. I will never forget crying until I fell asleep in the ICU. I hope I never forget. Those feelings are what propel me to try harder when I feel as if I am on empty, appreciate the tantrums as well as the smiles, and enjoy every day - even the terrible ones that I superficially want to end.

(3 years ago, yesterday)

facebook.
instagram.

sunlight. FDOS 2015.

"We can choose our mood..."

That was the theme at church last week. Before school started, we talked about no matter what life throws at you, you can feel all the feelings, but the general "mood" that your life stays in, is chosen by YOU.

I have felt this was true for a long time. It is very easy to be unhappy, in my opinion. It is easy to find the things in life that are terrible or stressful. There are storm clouds all around - negative people, situations that you feel as if you can't dig out of - but choosing to live in that storm is something I never have wanted to do.

...I wanted to find the sunshine. 

For the past (almost) 3 years, we have searched for a ray of hope filled light in every situation. It is hard work, honestly. It would be easier to sit around and cry about it. I could cry about everything that has happened to Reese, everything she has to go through. I could live angrily, thinking about my other children who have to watch their sister be the center of attention sometimes. I could feel sorry for myself, for EJ, for having to witness it all. Poor us, I guess.

We choose not to live in those moods. 

We cry, we fight, we are stressed, we worry and sometimes feel hopeless. But we made the unconscious decision a long time ago to realize that every day has sun and hope and that our season of life doesn't get to be sad.

I said before that Reese going to kindergarten is such a momentous occasion for me, in my own tired and worried head. I spent a lot of time on the internet googling statistics that mean absolutely nothing and looking at pictures of a kid who I couldn't see how she'd be when she was 5. But I can see her now... thriving.

The first day of school was awesome. The girls ALL came home happy. They told me stories of old and new friends, their favorite moments, excited about things that will be happening this year. I smiled the entire entire car ride as they chattered on about the wonderful events and promising things to come. After school, Reese had chemo - which is her new schedule - monday afternoons. This is the only time that fits 1. not missing school and 2. not being late to someone's dance class.

I have those moments where I am reminded that our actual season of life is a pretty bad hand, but there are so many amazing things that come from it - every day is a good one. One look into my kids' eyes and I realize that Reese isn't crying about what she goes through, the other girls aren't angry that sometimes Reese has things that we have to do - even if we all don't want to. I don't look at EJ and see him feeling sorry for himself - he and I are so proud of what we've become... the people we've made, the sunlight we see, and the mood we lead our family towards.

Another day down and "every part was my favorite part" from the girls. Nothing should ruin these happy days...