Hard

There aren’t enough words or time to describe how hard it is to see my daughter going through cancer. But I’ll share a bit. It’s almost 8:00pm, and we got here a bit after 8 this morning.

We’re in the hospital today for the beginning of her 2nd cycle of chemotherapy. She did these same chemo meds 3 weeks ago for the first time. They made her sick then. It’s happening again.

Last time she told people “I barfed more in 1 day than I have in my whole life.” She was right, she did. And, that kept up most of the week. We had anti-nausea medicine that helped, but figuring out how often to give it was hard.

So, there was a plan today for an additional medicine that she can start taking each night to help with that. Unfortunately, the vomitting came this evening before the time for that new medicine. So, she got something else, and it knocked her out. (In case you’re wondering- yes, they already gave her some anti-nausea meds at the beginning of the day – they start with that.)

Seeing her curled up with her glasses on because that med kicked in so fast is tough. Yet, I’m so glad she’s getting some rest.

For a while earlier today we were in “The Zone” I was watching her play video games, talk to the staff, and play fetch with the service dog. While we were there it was almost possible to not think about the fact that in a lot of ways she is fighting for her life. If you’ve ever wondered if providing and funding those special places in hospitals is important, we’d say it is. It really, really is.

But, seeing her lose all the Cheetos she proudly bought herself with coins some dear friends gave her into one of the green hospital barf bags, there’s no denying this is happening. There’s no forgetting she’s asking “will I survive?”

So often people ask how is she, or how are we, and we don’t have an answer. It changes by the moment. There are some really great moments, but even in those there is knowledge that the hard ones may be coming back around at any time.

Having to give (or have a friend give) her a shot at home is hard. Having to take other pills, when she can’t yet swallow pills, is hard. Figuring out how much of the medicine to help counteract the constipation caused by the chemo to give her is hard Watching her hair fall out is hard. Having to take her for a covid test before procedures and admissions is hard. Trying to navigate life with an immunocompromised kiddo is hard, it feels like the pandemic makes it harder.

She didn’t want to come to the hospital this week for her lab work. She didn’t want to come today for chemo. But, she wants to live, so she summons up her courage and does it.

I hate this for her. I hate it for us.

I am thankful for all the staff here who had been so kind to us. They’ve explained things, they’ve gotten things we’ve needed, they’ve cleaned up messes, they’ve served. I think it’s impossible to overstate the good that the Child Life staff, the volunteers, and the medical professionals have done. They’re helping us navigate a really tough thing.

Oh, one more thing… It really stinks to not know what questions to ask! Last time they told us to check in with admitting at 8am, and then her chemo was done at 2:30 and rescue meds were done at 10:30. Today we got here about the samec time, but it wasn’t scheduled to start till 2. So, even the parts we think we know what to expect, we don’t. Had we asked yesterday at our pre admit appointment about the timing for today we would have had a better idea what to expect today and not been surprised when the schedule felt totally different.

This is the beginning of cycle 2. The whole plan has 8 cycles for a total of 24 weeks. That’s 20 more weeks after this one. Five more months. Then, follow-up testing and scans. They’ll continue to watch and test for 10 years to check if she is one of the kids that gets more cancer from her cancer treatment. Yep, leukemia can be a side effect. Crazy, huh? 10 years of wondering, being reminded of it all, and paying co-pays. This is a long road.

So, how are we? Confused, tired, frustrated, thankful, hopeful, and much more.

Donating blood

Plan to donate this Sunday!!! Donations will benefit Joanna Estes. Schedule an appointment at: https://www.yourbloodinstitute.org/donor/schedules/drive_schedule/342793

I’m working up my courage to donate blood for the first time this weekend.

The first time I heard about donating blood was when there was a blood drive advertised at my high school. I know it may be hard to believe now, but way back then I didn’t weigh enough to donate.

Then I traveled to some countries that made me ineligible. Then I survived a traumatic event that made me ineligible.

Then I had to have lots of blood tests, those were a bit traumatic, too

So the thought of donating blood is very complicated for me.

But, now my daughter is battling cancer. Her doctor told us to expect her to need some blood transfusions during her 24 weeks of treatment.

I don’t want to go get a needle stuck in me, I just don’t. Not only because I’m dreading the discomfort, but I’m also dreading the thoughts of all those previous complicating things, and the fact that I’m giving because my kiddo has cancer. But, she doesn’t want to undergo all the tests and needle pokes and surgeries that she has, or the needle pokes, tests, and treatments to come. She doesn’t want to lose her hair or be throwing up. But she is.

So, I’ll do my best to pull it together and go over to the blood drive and sit in the chair and do this one small thing to help her. I’ll try to show her that some things are hard for adults, too, and that because we love her and want her well we do our best to breathe and smile, and maybe cry, and do it anyway.

If you’re near Edmond this Sunday, please consider donating too. Donations made at this drive will benefit Joanna. Schedule an appointment at: https://www.yourbloodinstitute.org/donor/schedules/drive_schedule/342793

If you’re not able to do it this time, there is an ongoing need and OBI has lots of times and places to accept donations. You can even still give for credit for Joanna, you just need to let them know that’s what you want to do when you donate.

Thirty-Four

34. From 1986-2020 is 34 years. From 1952-1986 is 34 years. 34 is the number of years that have passed since my mother took her life. 34 is how many years she had lived (well, 3 days shy of 34 years).

Most years as December 7th rolls around some of us in my family, including me, find ourselves thinking about mom and some of the ways that her choice has affected our lives. Over the years I’ve done the math, thinking about “now I’m as old as she was” or “now she’s been gone longer than I knew her” or some other variation of a way you can think about a number of years passing.

December 7th is also the birthday of one of my good friends from high school. If she hadn’t passed away from cancer almost 8 years ago she’d be turning 46 today. Knowing that today was a reminder of sadness for many who knew her was a reminder that anniversaries can be important. Both the happy ones, and the sad ones. They can remind us to take time to reflect, to remember good times, lessons learned, fun moments.

As I saw a social media post this morning from her husband reminiscing about her, tears came to my eyes. My sweet daughter noticed and asked why I was crying. I told her that it’s a sad day for my friend because his wife would be celebrating a birthday today, but she died awhile back. And, that it’s the day my mom, her grandma died. And I’m sad she’s missing out on knowing one of her grandmas. So we hugged and she said “I’m sorry”, I thanked her and said “I am too.”

So today, I paused school for my daughter and we played. She was super excited to open up a kit to make a hydraulic can crusher and make it. We spent all morning assembling it, learning about it, and crushing cans. After squirting water across the kitchen we moved the operation outside. We hung out in the nice weather on the back porch, relaxing and experimenting. We walked around the backyard and enjoyed checking out the grass we planted earlier in the fall, and soaking in the sun and checking out the smells of damp leaves. She doesn’t necessarily know why it was such a different day than our normal day. But, I do.

She loved experimenting and seeing the cans flatten. I loved watching her have fun. It was great knowing that instead of giving in to sadness I could take advantage of the time and simply enjoy the day. When she asked for a 2nd stick of cheese, I was glad to be able to say yes.

When she wanted to eat lunch in the living room and watch silly Elf on the Shelf videos on Netflix, I said yes, even to re-watching one, knowing that those goofy shows give her joy. It was cool to be able to make her a fun plate of yummy food for lunch. I was glad to be able to enjoy the simple moments together.

As we’ve been working on a Girl Scout Journey called “World Girls It’s Your Story -Tell it!” we’ve been talking about looking for clues in stories and finding ways to improve things. Finding ways to make the world a better place. So, for me, today that looked like saying yes to things that would bring joy to my daughter and soaking up her happiness as we snuggled on the couch. Instead of focusing on the very real sadness that comes from suicide of a loved one, I focused on having simple fun with my girl.

If you’ve read this long, I hope you’ll know that suicide is a bad choice. There are people around you who will miss you. Even when things are really tough, hanging in and seeking help is WAY better for those who know you than you giving in to the lie that ending it will make things better. It won’t. The effects on those you leave behind can last for years, or generations.

So Many Lessons!

Joanna (and Morgan and I) just finished up the last part of her Brownie Think Like a Programmer Journey!

At one of her first Girl Scout meetings 3 years ago the girls voted on which journey to do first. While she didn’t even know what a journey was, when she heard “programmer” in the title of one, it won her vote! Any chance she gets to do something like her daddy she takes, and this seemed like a great opportunity for that. Her choice didn’t win; doing an “ant picnic outside” caught the attention of more of the girls, so they started on a citizen scientist project. That first year, as a Daisy she didn’t get the chance to do any programming badges.

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  Think Like a Programmer Badge

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  Take Action Badge
  

That all changed last year! As a Brownie, she again had the chance to vote on a journey and in her new troop there were other girls interested in programming, too, so it won! Out of the six choices, they decided they wanted to work on the Think Like a Programmer Journey. I had the honor of trying to lead 5 Brownies through the journey. Talk about a learning experience! My 2nd graders were all at different levels of reading and writing. They were busy girls, some of them made it to all our meetings, some of them didn’t. And, then, the pandemic hit and our meetings had to pause (well before we finished our journey). Over the spring and summer Joanna was the only one still able to work on the journey. So we worked through the rest of the material together.

One unique part of journeys in Girl Scouts is the “take action project”. These are a chance for the girls to take some of their new skills and pass them on in a way that is sustaining and serves others in some way. As we’ve all had to do more things online, creating videos has become a popular way to do a project that can educate others and in that way be ongoing.

When it came time to choose a take action project Joanna thought making a video would be fun. Of course, none of us in the house have experience doing that with any of the software we have now. But, I said “sure!” and we jumped in.

She decided making a “how-to” video of making a sit-upon would be a good idea. Her troop worked through the Girl Scout Way badge together, and several of them made sit-upons as part of that. There are lots of versions of sit-upons out there today. In case you’re wondering, it’s basically a cushion you make to have something to sit on outside in case it’s wet or dirty. Newer ones are sometimes made out of buckets that the girls decorate and then attach a cushion to the lid.

My girl was drawn to the classic version described in the badge packet, so that’s what she made. We had a tablecloth we’d found at a garage sale and been saving just for this. We’d also been saving newspapers to use for the stuffing. And, we always have some type of yarn around the house.

So we each made one, and actually enjoyed using them when we did some sidewalk chalk art. Seeing the variety of ones out there she thought it would be fun to share how she made hers.

It seemed like a great way to take the “think like a programmer” ideas she’d been learning and put those into practice in a way that could help others looking to carry on the sit-upon tradition. She created an outline of shots for her video and gathered her supplies and we started filming. Tonight we finished putting it all together! She loves how it turned out.

In case you’re wondering what this craft has to do with programming, here’s how she’d explain it: The instructions (or steps) are the algorithm, there are variables in choosing the type of material, design of the material, what type of stitch to use, what to use for the stitches, what to use for the stuffing, and what size to make it. Also, the idea of a loop comes into play when you think about making the stitches all the way around the material.

There are lots of parts that the perfectionist in me would do differently if we were starting over. We learned a lot through this process. But, this is her project, not mine. It’s our first video to create. And, this is 2020! So, we’re proud to help her finish up her take action project and share her video.

Here’s the link to it if you’d like to take a look: https://youtu.be/Fi6YOOSw9nQ

I want to change that

I think all parents wonder about their children’s education. Are they learning? Are they learning enough? Are they learning the right things?

And, while I can’t answer all those questions I can say that I believe our 8 year-old is definitely learning some important things. Like most 2nd graders her spelling, capitalization, and spacing may need some work. But, her understanding of current events (that have been “current” for way too many generations) and her desire for change are right on.

Handwriting will likely be improved with practice and age. I can’t even imagine what will come next as her concern for others and genuine desire to help are nurtured and encouraged for the years to come.

Watching her create this was SO cool!

As part of a virtual Girl Scout event called “Lift Your Voice: A Juneteenth Celebration” sponsored by the Girl Scouts of Eastern Massachusetts the girls were encouraged to create an artistic expression about something they’ve learned or want to say.

She got busy right away. First she drew the peace symbol heart with “Freedom for all!”. Next came the 2 people with the “Black Lives Matter” sign -they’re going to a march. This was followed by the house with the sign in the yard that says “Black Lives Matter”.

Then she added the words “I’m sorry that you’re hurting right now. I want to change that! So please tell me how I can help”

I think that many of us want to reach out to friends, but just aren’t sure what to say. So, we stay silent. I know that there have been times I’ve seen reports of police brutality and thought that my friends were likely feeling extra vulnerable and hurt and scared, but I didn’t reach out. I didn’t know what to say or how to say it, so I said nothing. As I’ve reflected I think that silence can be painful to my friends. So, I love that my child summed it up: “I’m sorry that you’re hurting right now. I want to change that. So please tell me how I can help”.

Tears of pride/joy came to my eyes as I watched her create her piece.

In addition to seeing her pour her heart into her art, it was fun to watch her be excited about material they shared that wasn’t new to her. We’ve spent some time this week trying to educate ourselves about Juneteenth.

 

Earlier in the program she got really excited when they presented a reading of Floyd Cooper’s book “Juneteenth for Mazie” because we’d read it earlier this week.

I’m so thankful that even with the pandemic we’re able to get great resources from our public library.  They’ve done a great job making it possible for us to put items on hold and pick them up in the parking lot. This was 1 of 2 books I picked for us to read about Juneteenth. It was a great introduction.

 

We also enjoyed listening to a recording of “Lift Every Voice and Sing“. Though the version shared in the Girl Scout activity was different than the one we’d heard earlier, she recognized it. We’d heard it earlier today when I checked out some resources a good friend shared. If you’re looking for some more good information about Juneteenth, here’s a good page from the National Museum of African American History & Culture.  Taking time to listen to others and learn from their experiences has been so good lately.

I know that there is SO much I don’t know about this issue. But I hope that I’m humble and open, and that I continue to learn.

We’re planning to participate in the Black Lives Matter Children’s March for Justice this weekend. She was so excited when I told her about it. She started making a sign right away and thinking about what she would bring with her. Though we’ve been social distancing and keeping to ourselves for 3 months due to the pandemic, we’re coming out of our quarantine for this. We’ve decided that some things are so important they just need to be done. We’ll wear our masks and do our best to sanitize our hands and be healthy, but we want to stand up for what’s right, even in these days of staying home.

So, while I’m horrified and heartbroken over the violence, the hurt, the tragedy that has befallen our black brothers and sisters, I’m hopeful for change. Wouldn’t it be great if in our lifetime the tragedy of racism and the way it’s manifested here would change so much that it could become history, something all our kids and grandkids could read about instead of experience?

Learning from games

Something cool happened this morning.

While reading “What Color is My World?” My 2nd grader recognized one of the inventions. As we read about Dr. Valerie L Thomas and the illusion transmitter, she said “illusion transmitter, illusion transmitter, I know that! It’s in Ms. Monopoly!

Game card and page in book, both about Dr. Valerie Thomas

She excitedly ran over to the game and searched through the cards until she found the right one.

Seeing her make those connections and be excited about learning is SO fun! That morning we spent playing Ms. Monopoly was not only fun, but educational, and is helping her build a foundation of information about some great scientists. I had already been thinking it could be fun to select some of those inventions and inventors to learn more about, and then it happened, without any special planning.

I’m so thankful for our local library, it’s continuing to provide us some great resources. Right now “our” branch is closed for renovations but we can still place books on hold and pick them up from a temporary location. It’s great!

This last minute Christmas buy has turned out to be a good one. I’m looking forward to learning more as we continue to play.

32 1/2 hours on the road

I’m so thankful for my supportive husband! Expressions of love can look pretty different for different folks. Some of us feel loved when we get pretty flowers, others know they’re loved when things around the house are fixed or taken care of, some like to be taken out to fancy dinners, some appreciate a listening ear, others see never having to go the gas station as an expression of love. The list of ways to express and/or feel loved can go on and on.

For me recently, it was my man’s willingness to spend his extra time off, and his birthday driving over 700 miles each way to go to a 4 hour event. While you may google our trip from Edmond to Indiana and see that it’s expected to be about 11 hours and 735 miles, we knew from experience it would likely be 14-16 hours and at least one overnight stop on the way. In spite of that, on Friday morning he readily agreed to a day-of decision to leave that evening in order to be at a “Cookout for Life” on Sunday organized by my teenage cousin.

In late July when I started seeing posts on Facebook about his event I thought it’d be cool to go. But, the reality of finding vacation time from work and also taking time off school made me think it just wasn’t going to work out to be there for it. But, 2 days before the event when I saw this post with a video clip of him and his mom talking about on the local news in Indy I felt the need to go. So, I interrupted Morgan’s breakfast to confirm that Monday was going to be a work holiday, and told him I thought we should go for the event. He said “ok” -those 2 letters spoke SO much love. Though he doesn’t mind driving, finding out just hours before hitting the road that he’d be taking such a long a round trip wouldn’t be at the top of his list of ways to spend a holiday weekend. But, as always, loving me was at the top, so he was willing to make the trip.

We did it! It was great. And, it was long!!! We left about 4:00 Friday and spent the first hour at the service department reattaching something that had come loose on the bottom of the car. It was a bit after 11 when we got to our hotel room that night. Then, after breakfast in the hotel we got on the road Saturday morning at 9:15am and arrived at my Dad’s at 9:10 (which was 10:10 in our home time zone). Yep, even if we take out the hour we spent getting the car fixed, and subtract out the hotel time, we spent 19 hours on the road getting there!! Coming home went much quicker, 13 1/2 hours all in one day.

It was Dad’s idea not to tell other family members we were coming, we just showed up at the cookout with no notice. The first people I saw when we walked in were my Uncle Paul and Aunt Sandy. It was great to see their surprised, happy smiles to see us. That fun feeling kept happening as we encountered the rest of the family. It was GREAT.

So, why in the world did I want to spend what we thought would be about 30 hours on the road for a 4 hour event? You see, some things are worth celebrating, some things are worth standing up for, they’re worth saying “this is significant, and we should be talking about it.” So, though I’d love to use our travel time over a “real” holiday like Christmas or Thanksgiving where we’d have several days in town to visit instead of just one, I was drawn to show up and stand with my teenage cousin and the rest of our family who have survived multiple suicides of loved ones in order to illustrate and say that life is important, mental health is important, and talking about suicide can make a difference.

It wasn’t easy to tell my toddler daughter that she only had one grandma because my mother died. And, now that she’s a bit older, it’s not easy to tell her what suicide is, and even harder to tell her that people I’ve loved (and who would have loved her) have done it. But, it’s important for her to know that when people make that horrible choice it has lasting impact. Maybe if we talk about it with the young ones, if we tell them how valuable each human is, if we remind them that the tough things really will get better eventually, if we make sure they know that there is help available, maybe if we keep doing that, fewer of us will have to deal with the often ongoing pain that follows burying a loved one who choose this horrific path.

Maybe participating in events like the “Out of the Darkness Walk” will remind people they’re not alone, and it will help us be more able to remember that we deal with physical health all the time -we don’t generally ignore broken bones or cuts that continue to bleed, and so, we also need to deal with mental health. Just because it may be harder to see doesn’t mean it’s any less real. Just because we haven’t done well in the past doesn’t mean we can’t do better in the future.

The most recent update I’ve seen has Elijah sharing that the event raised $8,600 to split between the two organizations. While that amount is great, I’m thankful for the attention that was brought to this tough topic. I’m thankful he got people talking about the importance of mental health. I’m encouraged that this can be an ongoing conversation, and that we’ll learn to do a better job of loving and supporting each other. And, that as more and more people become aware and willing to share, we’ll realize in those dark moments that we aren’t alone, that our pain isn’t unique, and that it is possible to carry on, and in doing so a brighter day will come.

So, yes we spent 32 1/2 hours in the car to attend a 4 hour event (and we weren’t even there all 4 hours!) But really, we spent those 32 1/2 hours on the road for something so much bigger than a fundraising cookout. It was our way of honoring our family, of standing together and saying depression and mental health struggles are real, and they are treatable. Hard times don’t have to have permanent solutions. There are many other options besides suicide, and we’re here to let you know that doing something else is way better!

Seeing my young cousin stand up so eloquently for something so tough and important gives me great hope for the future. It reminds me that each of us can have a positive impact -some in big ways like this cookout, and more in smaller ways that are possible for each of us. I’m hopeful that opening this conversation in our family and so many others who were present that day, and who hear about it later, may reduce the number of people who have to struggle with finding a way to deal with the tragic loss of life to suicide.

Christmas to me

This year the holidays have felt a little out of whack.

We’ve been listening to a song “That’s Christmas to Me” quite a bit this year (it’s on a Pentatonix CD my kiddo loves) and when Joanna asked me “what’s Christmas to you?” I answered spending time with family, visiting, playing games, eating together.

And, while that is absolutely true it ends up there is a bit more that makes it feel like Christmas to me.

I knew that the traditional chocolate fudge Morgan makes was a big part of the holiday, but just figured out the homemade Nestle Toll House chocolate chip cookies are a big part of it too 🙂 I skipped those earlier this year because they can’t eat them due to the gluten.

But, with my dad driving over for a visit I made a batch, along with a new gluten free batch that turned out ok. There is just something special about these cookies for me.

And, to top it off, we’re getting snow today! So, it’s after December 25th, but we have cookies on the table, ham in the oven and the ingredients for fudge in the pantry. Now, it’s feeling like Christmas!

The Lord is 1

I noticed our kiddo writing during church service today and decided to take a picture. It was neat to see her so focused on something during communion time.

Shortly after my picture taking moment she stopped and asked me to read it. Then she added a bit more and a signature.

In case you need help deciphering the unassisted 1st grade spelling:

“I love God
He is kind to me
He loves me
He created me.
He is my Lord
The Lord is 1.
by Joanna”

In the tough moments of parenthood, I want to remember this sweet seven year old sitting calmly and writing, without prompting, her own psalm. Awesome!

Best part of the day

I am so thankful I get to witness these moments!

We’re reading “Missy Piggle Wiggle and the Won’t Walk the Dog Cure”.

It’s book 2 in the series and tonight’s section has Joanna giggling quite frequently.

All 3 of us look forward to getting to read Missy each night, and it’s disappointing when we run out of time and don’t get to read it.

It’s pretty cool to see how much Joanna remembers from the previous reading. There are times she knows more than I do about what has already happened to the characters 🙂