Several weeks ago Joanna told me she’d like a calendar to keep track of all her appointments. We printed one for her, she aded a few things, and felt like she had a better view of what’s coming up.
I took some time today to look back at the whirlwind of appointments so far. This is week 8 -it was 8 weeks ago yesterday that we first noticed the lump.
So, here are some stats: (it’s possible I’ve miscounted -it has been a very full, emotional 8 weeks)
She has had 18 appointments. Some of those involved multiple tests or procedures happening at the same time, I just counted them as 1 thing.
10 locations. Some of those were different doctors in the same hospital -different days, different elevators, I counted them as their own thing, because though it may be the same building it’s all very different.
3 visits to the Operating Room. (I don’t even know how many people worked on her in there, I keep seeing new names on billing statements)
3 Covid tests
1 overnight in the hospital
12 bags of popcorn handed out surgery day. Those are only the people that came into her room to ask questions. There were at least 4 more people that interacted with us that didn’t get or take a bag. And, there were others in the OR that we never saw.
No wonder my girl wanted a calendar. This has been A LOT! And, in some ways, it’s really just been the beginning.
One of the cool things that’s happened for Joanna in her journey with cancer is that a friend here sent her a box from Luke’s Fast Breaks. This organization makes shirts that snap all around so that kids can wear them when they’re at the hospital for treatment. So, instead of a traditional hospital gown you can have a cool shirt that will still allow access to your port for chemotherapy, or for whatever other things you may need. In addition to 3 shirts, there was a pair of grippy socks in there. Joanna loved them! They fit well.
Her first 2 surgery days she wore the ones the hospital provides. Those are fine, but they’re not very fitted. These from Luke’s Fast Breaks fit more like normal socks. She really liked them when they arrived and she tried them on at the house.
So, we took them with us for her big surgery day. She changed into them before going back to the OR. She had them on in her room for the night…until she stepped in some vomit. Unfortunately, the wet socks had to be set aside to be cleaned later.
We only have the 1 pair, so she swapped in the hospital socks at this point. It was great to have that option! But, now that I’ve seen some more “good” pairs of grippy socks would be helpful I did some searching and found 2 kinds for her to try. One of them is being returned, but this one she likes.
If you happen to be in the market for grippy socks, you may want to check them out. Or, if you’re looking for a way to send her a little helpful cheer, these are something she can use and will enjoy.
Today my sweet girl told me she saw a story on the news about a girl that had a lemonade stand to raise money for her cancer treatment. Then she asked “Mama, will I have to sell lemonade?”
I told her that treatment does cost a lot of money, but that is not a part she needs to worry about, in fact, not even think about. That she gets to focus on other things and not think about the money at all.
But, man, that is hard. She’s already dreading her next pre-surgery covid test -it’ll be # 3 for her. She’s finding it hard to know what’s ok and not ok to do with a port in her chest. She’s thinking about hair loss. She’s glad for fun things at the hospital, but nervous about surgery. She’s wondering if it’ll come back once it’s gone. She’s wondering where it came from and how to prevent it. To add concern about $$ to that list is just heartbreaking.
The fact that it is a real concern for me and her dad, well that’s hard too. But it should never even be on her radar.
I know many of us are wondering how to help Joanna as we navigate her cancer diagnosis. And, I don’t have great answers for that right now. As she’s facing another trip to the hospital for an MRI this morning, wishing it wasn’t happening today, I thought I’d share one idea.
Mail. She loves sending encouraging mail to people. One example: last year when the Girl Scout robotics day camp that she had earned through her hard work selling cookies was cancelled due to covid she cried. Then she got out some cards and drew a picture and wrote a short note to encourage each member in her troop. She knew that one way to lift her spirits was to encourage someone else.
Checking the mailbox has always been fun for her -even when the only things in there are junk mail.
When we talked about sharing the news of her “lump”. She wasn’t sure at first that she wanted people she didn’t know to know about her cancer. It was a bit overwhelming to think that someone living in another state that she’s never met would know about something so big happening to her. As we talked through that she decided it was ok for her loved ones to share her news.
We’re so glad she did! Not only does this allow her to have a giant team of people praying for and about her and her treatment, it has allowed people to encourage her through the mailbox. The picture above was yesterday, she was shocked by how full of love our mailbox was.
So, I wanted to let you all know that we appreciate you and that if you’re wondering if sending a card or note or picture makes a difference, the answer is yes, it does. It adds a great bright spot to what could be a really dark feeling day. Whether it’s Joanna or someone else on your mind, I hope we’ll all think about taking a few minutes to send someone a little cheer this week.
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.
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.
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.
Over the last few months Joanna and I tried something new to us. It was a way to learn a new skill, help someone, and earn a fun patch for her Brownie vest!
I saw a post about sewing pillowcase dresses for Africa and thought that could be fun. So, I checked out their website and discovered that they would even send a package of materials to use to make the dress. It worked! I emailed them and we received a package with material for 2 dresses and an envelope to use to send them back once they were done.
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?
Another great find at the library! Earlier this week we were having a bit of a rough time so we stopped to read a story.
I had no idea how perfect “Ruby Finds a Worry” would be for us. I think it would be great anytime, but especially in this time of uncertainty with the coronavirus causing lots of changes.
In the story, Ruby has a worry and she does “the worst thing you can do with a worry” and worries about the worry and keeps it to herself, so it grows and grows. By the end she finds that sharing worries is the way to go. I’ll let you find a copy for yourself to get the details.
Our 2nd grader was so inspired by the story that she wanted to make a Ruby. She checked our fabric stash and found a perfect solid brown to be the doll, then created the eyes and mouth. She sewed them all together to create Ruby. Next she drew a pattern and made a dress! She finished Ruby up with braids and puffs.
One dress wasn’t enough, she then created leggings and leg warmers. The leggings were made from a piece of a pair of leggings she outgrew years ago, along with a shirt. The leg warmers were a pair of socks that she also has outgrown.
Next she turned a Girl Scout cookie case into a wardrobe (we’ve been reading “The Lion, the Witch, and the Wardrobe” so that was on her mind.) Once the wardrobe was finished she created hangers -with pipe cleaners, yarn, and sticks from the yard! Now that she has a wardrobe she’s hoping for 7 outfits, one for each day!
The wardrobe with the hangers and 1st dress and leggings.
It’s so cool to see her learn about handling worries, and then use her creativity to kind of re-create the story. It is pretty amazing to watch what can happen when a kid has time, freedom, and access to some resources.