Love Letter to You

Happy Valentines day, I got my shopping bag, what are you going to get?

I thought maybe I’d be cute

But I’m much too tired for that

Oh I could go on about how I hate this day

It’s much too silly for me to truly feel that way

With the pinks and the hearts and the flowers

Watching people remembering love

Maybe things hurt a little less 

Giving comfort to this broken mess

Anneka painted this the night we were finding out Atticus had a tumour in his leg

I remembered Irene is still in there

Perchance sad and a little lost

Some treats for the kids and some for Jade

In the kitchen I was - those treats are homemade!

I woke up thinking of you

And I felt I needed to say a few things

I gotta write it and let you know

The gratitude, I need to let it flow

The last four years have been rough

The pain unbearable and unexplainable

But you were there all along 

Holding me up, keeping me strong

Just. Keep. Swimming.

If it wasn’t for you, we wouldn’t have eaten that night

Because of you, I was able to get snacks

To stress-eat when my boy was being cut open

By my side or in spirit next to me, keeping me hopin’

You visited us when we needed you

Seated beside me in silence when there was nothing else to say

Giggling, telling me stories of the outside

For moments, my worries set aside

You put groceries and household goods on my porch

Or the gifts in the mail

Quietly without me knowing, you didn’t need praise

Helping me find my way out of this dark maze

You won’t take “fine” or “good” for an answer

Considering you know me too well

Always holding space without scrutiny

Grateful to have you in my community

You make funny jokes

Some might even call dark or inappropriate

We loved it, laughter is a great inoculation

Against all the fear and frustration

You share your art with me

A generous gifting of your heart

Art, I know it heals

I might cry again, it’s hitting me in the feels

You send me sweet texts

Let me know you’re thinking of me

Even if I don’t respond

I still like it, and you don’t despond

You make me get up 

When I feel I must quit

You remind me that I’m tenacious 

And your love is so gracious

You make sure we are cared for

Because of you, we are not homeless

My willpower, of which you remind

I've done it before, I’ll do it again in kind

Even if I only see you on my screen

You and your family make me smile

You bring me hope when I think there is none

Sometimes, we might even have some fun

Little “leg gifts” the week before his amputation

Your devotion to my family amazes me

There’s no way I could even find the words

You support me honestly in my creativity

If my ideas are too out there, you come in with objectivity

Happy Valentines Day, my people

I can’t believe I have such an amazing community

You care for us and make sure we’re okay

Because of you, I can get up almost every day

When KGW came to interview Atticus after CJ McCollum sent a video message right before his amputation. Check it out here

Is “thank you” enough?

I don’t think it is, there needs to be more

Appreciation sounds so cliche

Nevertheless, I wanted to tell you on this holiday 

*****

Happy Valentines Day, y’all!

Check out our Merch Fundraiser, and mousepads are back in stock! I also have my boutique with vintage and antique clothing, handmade, and some sustainable, still working on uploading all of those, but you can also check them out on my Depop shop. Also the “list of ways you can help” page continues to get updated.

Once again

The last I left you, was that Atticus would get another chest CT in November, so that was scheduled. I’m really glad things are digital and they schedule us for an hour or two after the scan to see the oncologist. The nodule grew again, in just one month. Oncologist said they would discuss it at the tumor board and talk to the pediatric surgeon who took his other nodule out the last time. An appointment was made to see the surgeon by video on December 28. The scheduler at the oncologist’s office had called a week or so prior and said the surgeon wanted another chest CT before our visit on the 28th, and he had the scan on the 27th. 

The next morning we had the phone visit with the surgeon, who said the nodule grew again since the November scan and we should definitely get it out. She said the normal - that someone from her team would be calling us to schedule surgery, probably early next week. 

Around 1600 on Tuesday I got a voice mail “reminding” us of our appointment the next morning at 10:30, no eating for 8 hours, the whole thing. I was VERY confused, and as much as I hate phone calling, I called and asked about the reminder call.  Yes, surgery had been scheduled for the next day, no one had called except the reminder call. I told Atticus to eat up because he’s having surgery tomorrow! It worked out that they were still on holiday break. It was a weird day - the hospital was quiet, and  because of COVID, they closed the waiting rooms and my waiting room was his pre-surgery room. I did go up and get some lunch with Wendy, who works in post-op, and I felt comforted that she would be caring for Atticus after his surgery. 

Oh hey, surprise! Atticus gets lung surgery today!

When surgery was finished, the surgeon came in to let me know it was a successful surgery, and that this scar would be smaller than the last one. They at first hoped to do it laparoscopically, but it wasn’t a possibility, so opening his ribs it was. 

At least the lung drain didn’t sound as horrifying as it did the first time.

It was weird being on the fourth floor again, kind of comforting, but also the feeling of “well, here we are again…”. Again, watching my son, no matter how big he gets, in so much pain - might as well just toss my heart in a bench vise and just start turning that handle around and around. The drain hurt, his ribs hurt, he had a hard time catching his breath, and with my heart in that vise, I wasn’t breathing really well either. 

Oh, my heart! Photoshop by Anneka

The surgical staff was in charge of him since he was there for surgery and not chemotherapy. His nurse case manager came by a few times to say hi and chat since we were there, we hadn’t seen him in a while, and he’s a bright light in the dark world of pediatric cancer. But one day, Atticus’ oncologist came in, in the middle of the day - it wasn’t morning rounds. She gave us news we were expecting - the nodule was osteosarcoma and that he is now considered… oh that awful word… relapsed. Atticus said to her “it’s just never-ending” in such a sad voice, at which point I burst into tears, and pretty much haven’t stopped this entire month. She told us she’s in contact with the doctor at OHSU Doernbecher/Knight Cancer Institute who will be doing the trial and they are setting us up with her.

Me all month, only not as cute

January 10 we went to Doernbecher and talked to this new oncologist. I was scared, but I have another friend who works there -  I told her we would be coming in, and she was on the 10th floor waiting for us when we came in!! It felt so comforting to see her and helped put me at ease. The appointment was good, hopeful while a little confusing, and a little disheartening to look forward to another year of chemotherapy. 

Atticus will be 18 this month. A time that is usually celebrating some extra freedom, a job, maybe get a car, thinking about graduation, the future, what kind of job will he get, what adventures will he get up to. Atticus wants to just be normal and get a job and feel like a regular teen. He’s missed so many years of just being able to be a kid. Instead, we are looking at another year of chemotherapy. Waiting for the trial to start, trying not to worry about the cancer spreading, did the nodule leave a little cell behind that will now rapidly reproduce? 

Meanwhile, Anneka turned 20! How did that happen?!

He got out of the hospital and got to come home on January 1, an interesting way to start 2022. January 2, it’s been four years since he was diagnosed. The last four years have been so difficult, stressful, terrifying, heartwrenching, exhausting. Just when I feel I am at the end of the little thread of the end of my rope, something else happens and our life gets put on pause again, for another year. We are grateful for this trial, and to help forward science and medicine for pediatric bone cancer.

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But guess what! I have some pretty cool news! Sometimes as creatives we create when things are rough. This is a new type of creating for me as I’m not a drawing or computer-type artist - give me some mannequins and let me play dress up!

I announce to you… our brand new MERCH FUNDRAISER! I’m so delighted that after some brainstorming and collaborating with talented people, I got to see it come true. It’s kept me busy this month, and I needed busy. So please, go check out our merch, some super cool things in there to show the world your support of Atticus! When you do receive your items, please make an unboxing video or take a pic with whatever it is you got, and tag me on Instagram! I’m so excited for you all to see our merch - and don't let the middle finger deter you - I have G-rated versions as well (especially on the kids' items!). You can also check out my boutique, which I am still working on uploading items to the site, so keep your eye out for new items, follow my sustainable style Instagram @ireneveldstrastyle to keep up on new items! 

If you can’t shop right now, it would be awesome if you shared the links on your socials, or if you already follow me, share my posts! I’m excited to see what you all get! 

Check out our merch fundraiser!

Bête Noire

As we know by now, it takes me a bit to process alone for awhile before I can give updates, even though I know people do care and would like to know things.

First, I feel like with all that has happened in the almost four years since Atticus was diagnosed, I would be better at “being like water” as my friend says, who also has a large tattoo on his arm of the phrase. Therapy, medication, I would be tremendously worse off without them, and I do know I’m growing and finding tools to cope, but sometimes I’m so overwhelmed I forget my coping skills. Sometimes, I feel I’m way worse off at being able to handle bad news, or maybe just news.

I have all of Atticus’ cancer stuff which just doesn’t go away when finished with treatment, there’s upkeep and lots of appointments and problems with his prosthetic leg and the seroma that’s causing pain. Things they don’t tell you- chemo destroys teeth so a lot of hours are spent at the dentist. It’s too much to bear at times, watching him struggle and in pain, and me being scared about “what next”, in addition to everything else in life that is just life, but that I’m not dealing with well at all.

Atticus had his scans on October 20, then we visited the oncologist on the 22nd to find out the results of the scans. Well, since this new rule, or law came in that they have to push the results in to MyChart as soon as they get them, it’s another anxiety battle as I’m googling all the words and phrases that I don’t understand which of course make me more nervous. However, I do also like that I can look over them so I can prepare my questions.

It’s not terrible news, but it’s not great either. He has osteosarcoma nodules in his lungs, he had some removed before. Most of them are so tiny that they can’t really do anything about them, and it seems the Stivarga has kept them small over the last couple of years.

But now one grew from 4x4mm to 5x6 mm, and that’s since the last scan that was done three months ago. She was going to bring it to Tumour Board which is on Tuesday mornings and find out if the surgeons would be able to palpate it at that size and if they think they would be able to remove it.

Tuesday came around, the oncologist called and said the surgeons think it’s still too small, but now he will get another scan this month, November to see if it’s still growing, how fast, and again, if they can do surgery. She spoke about maybe re-starting the Stivarga as it seemed to keep them small, but also since he had just quit, it’s not like it would have grown that much in a week. The side effects of Stivarga aren’t great. Not as bad as the horrific inpatient chemotherapies he was on, but it does impede the quality of his life.

I also asked if he was going to go in for surgery, can someone just jab the seroma with a needle and drain it while he’s under anesthesia anyway… but that’s up to different teams. She said it might still grow back, which we understand, but maybe it might give him some relief, maybe off the Stivarga it won’t grow back so fast, maybe if he keeps the compression stocking on his residual limb… maybe.

Nothing is for sure. That’s one thing life guarantees us. It’s a very, very stressful waiting game. As always, ways to help are still listed on the How To Help page if you so desire.

Until next time… Be Like Water.

Felicitate

My life is full of pain, terror, heartache. I’m scared every three months at scan time. I’m angry about these seromas that kept coming back after two surgeries, it keeps growing, no one knows why - they keep saying “let’s just wait a bit and maybe it will absorb back in your body” but it doesn’t because it’s encapsulated. He struggles to wear his prosthetic because of the pressure it causes on the seroma which causes pressure on his nerves, particularly the sciatic. When he falls down I want to explode in anger and want to scream at the top of my lungs, seeing my beautiful man-child falling, getting hurt, and becoming exceedingly frustrated.
There are jokes among friends - “Irene’s crying again” and “Irene’s scared of everything” and I feel like I’ve locked myself up in my house for four years because I just can’t even. People say “you’re inspiring” which makes me feel like I must be lying about something because hiding in my cave and crying and being scared of everything, while every cell in my body hurts, certainly doesn’t seem inspiring to me.
I wake up every morning, cry, and have to immediately put a podcast in my ears to keep the dark thoughts at bay, so they don’t trap me for the rest of the day.
They won’t do anything else with the seroma if he’s still on Stivarga, as it prevents healing, which is a suspicion of why the seromas started in the first place. Can’t even drain them because it’s another poke in the skin that can get infected.
When the oncologist told us it’s been two years, he can start getting off the Stivarga, I burst into tears - it should be happy news. Atticus, who has seen me cry over really anything was even shocked at my reaction. The oncologist said, “she’s afraid your lung nodules will grow bigger”. I was surprised, but I’m sure her experience with cancer parents has made her become a bit of a mind reader.

I want him to get better but I’m scared the cancer in his lungs will get bigger or spread if he’s off the meds. But the meds aren’t great either, and maybe in a few months, he can have another surgery to try to excise the seroma again. I don’t know. No matter what it will be, it all sucks.
I’ve seen a lot of beautiful “cancer-free” or “last chemo” cakes, but one came with the comment to celebrate the small stuff too, even if treatment isn’t over. And so, even though I’m scared, I went to buy cake mixes to make a cake, and even store-bought frosting. Days went by because I felt I couldn’t even make a cake from a box, and finally sweet Ângelena came home after school and said we are gonna make the cakes.
Not the most beautiful cakes in the world, but with Ângelena’s motivation and me standing there, the cakes were done.
Celebrating the small stuff. Even if it’s just a “for now”. Celebrating and grateful he’s still alive.

And maybe, instead of letting the darkness grip my soul, I’ll try to keep celebrating the small stuff.