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

Early May.

Turns out - while I was trying not to think about what reese would possibly look like when she was older, while she was sitting a hospital bed years ago, she would end up looking just like herself only slightly (slightly) bigger. lol.

Only now, almost 4 years after we had to pull so many of her teeth because of chemo, reese is getting a front tooth in.

I almost cannot handle it. When she talks, that little white nub peeks out and I get all weak in the knees thinking of how long it has been since I have seen a tooth in that vampire smile.

Age 7 is old. Like, it isn't a baby or a toddler. It isn't a preschooler or someone entering school and beginning a journey.. it's a kid. A kid who is going to be in 2nd grade. A kid who is trying to manage learning and social skills, learning math and choosing things to do during recess. A kid who is just happy to get a front tooth.

Reese's favorite things on earth are going to dinner (pizza or mexican) and hanging with her family. We were going to do a party, but she wanted OTB and bowling with the fam and so thats what we shall do.

She sleeps with me any time EJ is out of town. She sneaks you by saying "can we have cuddle time?" and of course you say yes, but she means IN YOUR BED TONIGHT WITH YOU RIGHT ON TOP OF YOU?! and still... the answer is yes ;)

She writes/draws/colors all the time. She wants very badly to be better at sounding out words to write them and so thats what we work on at home. She likes to write people notes or make books for Foxy.

Foxy is still her BFF. That being said, watching her with her girlfriends at school is such a treat. They are all so silly and fun and Reese is just so happy to have little jokes with everyone.

Reese also has a "family" with Foxy. She will say "wanna be in my family? because in Foxy's family, you never have to do dishes or laundry and you can drink wine and take a nap" (sounds amazing, right? lol). She tells us all the fun things her family does (that family also has troublesome "little boys" that don't even deserve names hahaha). Her imagination is just so fantastic. I could listen to the stories she tells for hours.

...and sometimes I do when she wakes up and wants to chat when I am heading to bed haha.

Her favorite colors are orange and pink. She wants to play soccer again in the fall if possible. She is going to join brownies with her friends. She likes wearing joggers with pockets best. All 3 of her laylees/blankies are different and she can tell which is which by feeling them between her fingers.

When she gets riled up about something she "can't calm down!!" because she's such an emotional soul. Her happiness all of life is paralleled to how she can get her feelings hurt, too. I will gladly take the cuddle after, though.

She doesn't wear her boot much anymore. She seems to have learned to pick her foot up more so when she is running - not that the rubber doesn't get caught and trip her sometimes, but we will see. She is having so much fun wearing different types of shoes and thats a small milestone, too.

I am desperately counting down to the end of the school year for my elementary kiddos. It.Is.Time.

I don't want to make anyone's lunch anymore (even though at this point, it is just Reese's, usually - and then M and C's 2 days a week). I don't want to wake up at 6am anymore. I don't want to sit in a parking lot waiting for kids anymore. I want it to be summer where we wake up, leisurely eat, go to the gym and then swim. I want to come home and eat lunch and take naps and then go to dance. Then I want to stay up late and do it all over again.

The rest of the year, in the next 2-3 weeks, we have field day, school talent show, more dance company try outs, picture day for recital, then all of the recital things - including recital memorial day weekend.

To see Aidan as Annie, and then the rest of the brood throughout the show in like 10 other dances (lol), is going to be damn magic. They have all worked so hard and to see it come to life is just going to be such a proud moment as a mom.

STAAR testing is done, GT classes are done next week, all the things are done except for actual school, though. Which is making me want to crawl into a hole lol

I am going to go think about how this baby here, turned into that big girl. Right before my eyes.

Dear Reese,

I love you. I love you every second of the day. You teach me patience and kindness and how to love in any sort of situation. Thank you for being you, for teaching everyone around you that life is something to treasure and to make every day a happy one. Thank you for saying "today is beautiful out!" or reminding me that the sun feels nice. I will never get sick of seeing your face when I pick you up from school - and you jog over to throw a paper in my face and see my pride in your most even basic work. I will never not want to have cuddle time in my bed. I will never be sick of waking up to your sweet voice asking if I "had a good sleep?" or if you can go wake Foxy up. I would keep you home from school everyday just to hang out, if I could (honestly, I would do that with all your sisters, but alas). Thank you for all the years of that gummy vampire smile - and thank you for the years to come with those goofy front teeth. I love you.

Love, Mommy.

the end of "ish".

December 2014, I felt the weight of the world, again, when we were told that Reese needed to be back on chemo. We had been off babyPOG for like 7-8 months, taken her port out, and finally gotten into the groove of being "normal" again. I knew, though, going into the December 2014 MRI that something was wrong. I saw things that I, after finding out we'd get a new port and start vinblastine,  never saw again. Signs that gave me grace to just needing to know that I was right, even if it was not the news anyone wants to hear.

After that MRI, though, things never felt as heavy going into each scan. We spent each one watching her tumor change, but not necessarily *bad*, but just different. Small growth here, shrinkage there. It was stable "ish" and I was totally okay with that. She isn't symptomatic day to day so just hanging out in this zone was fine by us. The thing about scans is that you have to compare to previous scans further back than the last one - and they compared to the October 2015 scan yesterday. Basically we are done with vinblastine. I knew already, though, that it was coming. I braced myself for yesterday's change and was almost excited about our new path when I left. I didn't want to hear 15% growth in the past year (which is relative, I guess, until I have actual images to show you), but we worked really hard 2012-2014 to get to where we were when we started vinblastine - and I definitely would not want to lose ground on it now.

Summer 2015, we did the FoundationOne genetic profiling on pieces of Reese's tumor from 2012 surgeries. That's when we found out that her tumor cells have the BRAF v600e mutation. There are specific inhibitors for that mutation and one of them is called Dabrafenib. It is a pill 2x a day. There's no taking Reese out of school for chemo, no labs every week. There really aren't a lot of side effects that I have read while being an internet oncologist (lol) - and the side effects that do exist are totally manageable. As I told the doctors, we've been practicing swallowing pills for months for this change. I just didn't know when we'd actually need the talent. 

Having a plan in place stopped me from having tears, forbade me from even feeling sorry for myself. We are 4 years into Reese's journey, but I am decades from the emotions that I used to feel most of the time. There's so much more action in my thoughts than there is sadness or fear. I can't quite explain to you where a mom of a brain tumor child's mind goes when things are quiet or when a scan or treatment plan is up in the air. It's morbid, really. Have you ever thought to yourself "what would she wear if she died?" or "would I sleep with her foxy if she wasn't here anymore?" and those thoughts compound every fear and sadness that exists when you're waiting for what's next. It isn't as if I don't think about those things in the depths of my nighttime heart or that I don't feel sick waiting for results, but it is a different beast when you can conceptualize what your child will do next. 

Today I will have excitement for things to come with this drug that is matched to her specific tumor. And with plans come more plans... and just in case plans. and years later plans. and safety net plans. But for me, soon, we will live pill to pill, scan to scan and I pray that the weight that I have shed, on my shoulders for so long, continues to feel lighter and lighter. There are amazing results out there for this drug and I hope to see Reese among those statistics. 

IG: www.instagram.com/theskelteseven

soccer.

The first practice was cold. I ran back to the car to find some earmuffs, but by the time I got back to the field, Reese had already boycotted the rest of the training for a cozy chair with a blanket and a friend. 

In days prior to her first soccer practice, I had to find shin guards and shoes that fit w her boot shoved inside. She argued about which pair she liked and then argued about wearing her boot at all. 

Soccer.

A right of passage for all kids in north texas, it seems, and one that I didn't know Reese would be able to experience. 

She hugged her friends, made new ones, and told me how she really only wants to play in games, not practice (lol). 

When Saturday at 1pm came around and her first game was in session, my heart felt like it was going to burst. She had her bright green jersey, matching unicorn soccer socks, hair in a legit ponytail. 

I watched as her friends would cheer her on, sometimes pausing to get the hair out of Reese's face with a gentle touch. I see how unconditionally caring children are - and how much they care about their friend, Reesey. I hope one day I can show her through stories and photos how absolutely loved she is. 

things I always say.

She is so small at night time. 

During the day, Reese is a solid 44lbs. The scale at the hospital says 20kg and that is exactly what she feels like. Being only about 39" tall (that's 1%ile, finally), means she often feels as if you're picking up a bowling ball or what I would assume slinging a sack of potatoes would be like.

But at night, her entire face fits in my hand. She can lay on top of me and fall asleep and it feels like nothing. If she sneaks down into our bed, she curls into a tiny ball that seems to match the exact space between my shoulders and hips as I wrap my arms around her.

My face doesn't fit in her tiny hand, though. She cups my face when I talk to her when we're cuddling and the proportions of child and mother are so skewed.

Her MRI is next Tuesday. I have mixed feelings, as being home with the kids all holiday break gave me time to worry about things that aren't necessarily there. More time spent at home means more opportunities to watch her run or open and close bad arm.

She tells me everything from school, now, so "oh, I tripped on a chair holding a bucket" doesn't make me think she's a silly girl who couldn't see because of the bucket, but drives me into a sort of spiral of nervousness.

But, either way, I have a plan. By I, I mean we, by we I mean her doctors. So, tuesday will either make us stay the course or veer towards something else.

I have spent days simply writing this post and I don't know why. I don't know if it's because I am beating the same drum that I always do - and can't think of another way to write it? Or if I just don't want to deal with my own emotions right now? Sigh.

Aidan has her first dance competition of the season this wkend - and her first solo ever. She makes me so proud - even when she wades between hating everything I do and crying that she needs her mommy. Sawyer is rockin' school so much and my heart swells for how much she has grown this year. Miller spends all day doing what she does - being herself and not caring what that means to the rest of the world. She dances in public, wears what she wants... which reminds me of a tiny sawyer and that makes me excited and nervous for the future years. Corbin talks all of the time with adds "me too!!" to anything the other kids are doing. She copies what they say, makes them laugh, and is my daily bff.

There are other things I just want to write down, I guess - like how reese asks me "did you has a good sleep?" when she wakes up in the morning, or that her favorite breakfast food is sugar free popsicles. Or how when we go to chemo, she doesn't even need me around and tells the nurse "you tell my mommy to stop talking?" when I tried to update her on what we're doing.

I am having to remind myself to live in the moment, recently, instead of for bed time. After bed time, I have immediate daily regret and vow to slow down the next day. Some days I succeed. Some days I go up after they are sleeping and curl into someone's bed in hopes they thought the day was better than I did... and that they maybe wake up and see that I am always there.

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.

lightening up.

The weight of it all does not get lighter. As we approach 3 years from dx, sometimes the weight can feel heavier. I think at the road we've been on, chemo that worked, the ones that didn't, the in-patient stays, the ER runs; and you think that there must be the light at the end of the tunnel sometime, right? but I can't see it.

It isn't as if I am a skeptic. I am not. I have great faith that Reese will be healed one day and that this can be our path - but I am also a realist. "low grade" gliomas tend to need... care, for a long time. That may mean on and off chemo for all of childhood. It may mean surgeries or radiation. It may mean times of stability and then back on and off more meds. It is hard to sit, 3 years in, and think that the possibility of this being that much longer is there.

Perspective changes after this long, though. A 99 "fever" that I used to hoard reese home for - I send her to school with. I remember that bad moods are what 5 year olds have and that it isn't the tumor changing her. I hold in my heart that she can be sick like other kids - a sinus infection is just that. Praise the boogers that come so I can settle my thoughts into allergies and not tumor. My scanxiety is different. I know that I can't change the results with my worry and fear, so I am more easily able to tuck those feelings into my pocket and just pray to hear the words of stability.

There's jealousy in the cancer world. No one wants to talk about it, but there is. There are parents jealous of Reese. Wishing they had more options available... or that there were options at all. There are parents jealous of statistics - looking at those children who have an over 90% remission/NED rate and think "I wish that was us". I am jealous of long term stability off first protocol, obviously. I am jealous of people who can cheer at the end of chemo knowing that it is highly likely that this leg of their journey is over. All of this evolves over time, those feelings, that you don't even know existed until you have a little twinge of jealousy when someone says "two years stable!!" or "NED scans!" or even when someone says their diagnosis in their first post on a page. Welcome to our world, I am jealous of you. I read once on a blog of a mother whose child had DIPG that she was jealous of the bald kids at their hospital... because that meant they were doing chemo, which had the hope and promise of possibility - and that's all she wanted. I think about how reese advances in school and goes to dance and plays with her sisters and re-learned to walk, even... I try to keep it in perspective, but we are all human. We fail and remembering to hold that perspective in our minds at every moment. Those jealous feelings are a sneak attack on my heart.

EJ took the girls to school today. I sent her off, another day, to be loved on by literally dozens of people. To wave to her friends in the halls, hug those who need it, learn and expand on her kindergarten knowledge, and laugh with them all. Last night, in the car, all of a sudden reese was laughing in her seat. When I asked her what was up, she just said "oh I'm finking of sumpin funny from school today". Her own little secrets with her little friends. I made my heart soar.

There's so much emotion on the timehop app this time of year. Her bad arm, her fall that didn't get a CT, and october brings ER trips and vomiting. Sometimes I want to yell "oh geez, you were so stupid" at my phone as I read my status updates blaming soft signs on other things, but I didn't know. No one did. I wade through it all until I get to halloween time to where she could barely lift her head and, finally, revel in an answer.

Things get easier and harder at the same time. You become a pro at things, like weekly chemo that seems like no big deal, like answering questions about side effects or what options are likely next for other people based on your own personal research or endocrine issues that you may or may not have. But you can never be a pro about letting yourself not go there. The what if's, the what's next, the whens. You worry about doing more or less than you already are - should I cut out more sugar? should we rub oils on her? should I clean with these supplies? the list goes on as you learn more information. You have to wade through the claims, the facts, the trials, and just... feel at peace in the end with whatever you choose. That is a heavy piece of weight.

I may not stress about fevers. I may not worry about counts. I may not think about the bad things all the time, like I used to. I may have come to realize that this is a part of our lives forever. But that doesn't mean the weight is lighter. I am able to remove some weight, shift other pieces to put different things on, and so forth. I am able to let other people hold some of the weight for a few minutes, to give myself a break,  but in reality, it just sort of means that I learned to carry it in a more productive manner... that I put it in a wrap, so to speak, so I have the rest of me free to continue life. My hands are free to love on my babies, my heart is free to dream.

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...