I’ve been delaying on updates as I do because I need to work through my mess of emotions before I can even form words. FIRST: it’s not cancer. Second: his bone is not that sharp, it’s just the image slide that makes it look that way.
Remember that seroma he got removed in November? About a month ago he was hurting again in his stump and once again we went to the ER in case there was an infection or who knows what. They didn’t do any imaging but did blood work and all seemed fine. Went back to prosthetist to get a new socket made since the surgery made his stump smaller and couldn’t wear his leg. Both of us just kept feeling something was amiss, pain was off and on, but we knew his 3 month scans were coming up end of January. Day after MRI we go to get results and the 🤬 seroma is back and almost the same size as before. I immediately emailed the prosthetist and told him to pause the socket making.
Saw the surgeon on Wednesday of last week and there doesn’t seem to be any reason this is happening, bodies just do things.
So, we are waiting for them to schedule surgery for him again, and they will do things a bit differently this time, maybe leave his drain in longer and other sciencey stuff. 💉
In other news, the chemo pills seem to be slowly shrinking his lung nodules, except for one thats not shrinking but also not growing so that’s 🎉
Thank you again my friends and fam for your social-distancing and long distance support, couldn’t do it without you 💝
Seroma
If I could actually draw, which I can’t, you would have a much better image of what’s going on. But I can’t, so I tried to draw from memory the MRI that they showed us, which, is horrible but I will still use it as a visual aid.
First, what the heck is a seroma?
A seroma is a collection of fluid that builds up under the surface of your skin. Seromas may develop after a surgical procedure, most often at the site of the surgical incision or where tissue was removed. The fluid, called serum, doesn’t always build up right away. The swelling and fluid may start collecting several weeks after surgery.
Several weeks! Or in Atticus’ case, several months. He’s been having some pain, especially wearing his prosthetic and then taking it off. He landed in the ER one day because the pain was so bad, and it was, of course, the weekend. X-rays showed nothing, then they sent him down to MRI and Oncology talked to OHSU surgeon, and I got a call the following Monday that this seroma has been growing, and now quite large, which is why the pain was considerably worse.
Let’s take a look:
I am not a drawing artist
Disclaimer again, not a good artist, the scale is probably all off, but it will hopefully give an idea of what’s happening, and the colours I used are used as an illustration, not actually the colours of inside his leg (I’m pretty sure bones aren’t blue!).
For some reason, because bodies just do what they want sometimes, his tissue inside (red lines = tissue) didn’t heal to itself like it should have, which created scar tissue on the inside, which created a neat little pocket for fluid to go into. I’m going to continue to use the word “fluid” so I don’t gross myself out just writing this. The surgeon could see on the scans there was scar tissue all around it (the black line), and he could drain it, but the pocket would just fill right back up again.
The surgery that will take place will drain the fluid, and then the surgeon will remove the scar tissue so it’s back to healthy tissue on the inside and hopefully this time it will heal the correct way. The surgery is scheduled for November 12, we don’t have a time yet. He will be getting a COVID test two days before, then we keep on quarantining until we get to the hospital.
He will end up needing another new socket for his prosthetic, after recently just getting a new one; but we will take that bridge when we get to it.
Speaking of COVID, the rates are going up all over the country again, and in Multnomah County. All the hospitals are pretty strict about visitors, even going to his scans and oncology appointments, where we are all the time - I still have to convince them I am actually his mother. I’ve always appreciated when my friends joined me at past surgeries - in the waiting room and bringing me snacks, but, well, COVID. So keep us in your thoughts, send good vibes, whatever your thing is, but don’t visit! It should be a day surgery anyway and hopefully, depending on what Pathology says, go home after he wakes up.
He will have a drain, so they will be training us on caring for the drain which I am really not looking forward to. One would think after almost 3 years of gross stuff I would be able to handle all this better and better, but I’m pretty sure it’s getting worse and now everything grosses me out, so that’s a fun mom side effect I wasn’t expecting!
For those of you who know where we live, you can always swing by (text him or myself first please) and wave at Atticus through the window while he heals.
There is our recent update! Remember, when you are working from home, or tired of trying to help your kids with their at-home-schooling, or they are driving you nuts…you might be sick of this pandemic, that there are children all across the globe who have been quarantining and wearing masks before COVID showed up. There are kids dying of cancer, so remember them when you are worried about your kids being behind, or can’t see their friends - there are many kids who are so sick they can’t even do online schooling, who have fallen behind in school. Parents are grieving -even if the child is still alive - it’s still a huge grieving process, and don’t even know if their child will stay alive. Be kind to service workers, wear your masks, socially distance, believe in science, and hug your healthy kids.
Hi friends. It’s been awhile. November 2018?! Well certainly a lot has happened since then and because of that, I haven’t had the inspiration, motivation, or energy to write.
I know most of you keep up with me via my social media, and my Instagram gets pushed here. But just in case you haven’t, here is the summary. Fall of 2018, we thought we were done with chemotherapy. Atticus would get scans every three months to make sure the cancer hadn’t spread. First set at 3 months was great. At six months, the cancer had returned and we were back in Cancerland again! The tumor was growing right behind his implant, in addition, it was getting all tied up with veins and nerves so when we went in for the first biopsy, they couldn’t do it because of that situation and didn’t want to rupture anything that might spread the cancer further, so they opted to do an open biopsy instead of an ultrasound guided needle biopsy.
Because of where the new cancer was located and the fact the cancer came back so soon, the option was pretty much amputation. Atticus handled it quite well, in fact being just like “yes, lets get this leg off me”. And so it was.
He also went through more inpatient chemotherapy at Randall Children’s Hospital. I was just thinking shortly before we found this new cancer about how much I missed our nurses. Well, we got to see them again. This treatment was easier on him that the chemo cocktail in 2018, as he didn’t lose as much weight and not continually sick. I mean no chemo is rainbows and butterflies, but compared to 2018 chemo, this was better.
Atticus dealt with phantom pain, regular nerve and muscle pain from getting a limb lopped off, in addition to the chemo, he was pretty miserable.
He had a surgery for some small pieces of osteosarcoma in his lung that they had been keeping an eye on, but at the time were too small to remove. They hoped the chemo would shrink them but they stayed the same (which is better than getting bigger!). He also had tissue start growing around his port, so they had to remove that as well, and now just doing blood draws from his arm.
Chemo ended late summer and he started getting ready for his prosthetic. This was a pretty confusing time for us, I mean, we’ve never shopped for a leg before! Maybe I will tell that story another time, but at least he has his leg now!
We are now back into the part where he gets every three month scans, as those of us in the cancer community call “scanxiety”. It’s usually about a week for us with all of them and follow ups. He just got all his scans the beginning of January 2020 and he was mostly clear. He still has lung nodules, again, very small, they just have to keep an eye on them.
He is currently taking Stivarga, a chemotherapy pill. He hasn’t lost his hair with this one, which is nice, as his beautiful head of hair has just grown back! The chemotherapy pill does still have side affects that aren’t enjoyable and they had to find the right dosage for him, but again, still way better than being in the hospital and the infusions! Hopefully the Stivarga will kill any remaining cancer cells in his body so nothing will start growing in there.
And here we are now, already February 2020. He is a sophomore in high school and working hard. Going to physical therapy and monthly oncology check ups and three month scans. Through this last year and more, I’ve learned that there will be no going back to “normal”. There might be a new normal, but there’s no “yay, we are back to normal and lets get on with life before cancer showed up”. Cancer destroys families, mental health, friendships, bodies, and minds. There is still grief to deal with, and a future to look at, although with trepidation.
There are days when I feel like I can’t do this any more. Not one more minute. But as Kimmy Schmidt says:
You can do anything for ten seconds! And then do it again.
And we did. Sometimes ten seconds at a time, sometimes an hour at a time, sometimes even a day at a time. But it’s all slow, and painful, and heartbreaking. I frequently wonder how long this dark cloud will follow us, and maybe it will until the end, and maybe we just need to accept this is our life now. It is what it is. And here we are, still alive. Maybe not at our best or what we think should be our best, but alive. Ten seconds at a time.
Perspicacity
Happy Cyber Monday!
I hope you all had a lovely holiday weekend, whether you celebrate Thanksgiving or not! The kids all got to see and visit relatives - Atticus’s first trip out of town since his diagnosis. I worked on rearranging the house, cleaning, enjoying silence and some much needed alone time, but I was also able to catch up with a couple of good friends.
Are you a Black Friday shopper? Is it a tradition for you to go or not go? Do you like going with friends or alone?
Well… either way, if you shopped on Friday or didn’t yet…Let me introduce you to… drum roll…
ARTSY ANNEKA
I mean, you know, she already existed, as did her website, but she refreshed it, added new art and garments. In our cancer education at the beginning of Atticus’ treatment, there was a whole section on siblings and how much they struggle through all of this as well.
The night we went to the ER, Anneka called a couple of friends over for comfort as the only thing they knew was that I was upset and we didn’t really know anything. So she painted this:
Anneka looked up the different colors of ribbons that go with different cancers. Yellow is the color for bone cancer so there is a lot of yellow in there, but she added some others as well. You can purchase “Cancer’s Flowers” here.
After Atticus was diagnosed with actual bone cancer, and the rough weeks leading up to it, she painted this:
In one night, our little family’s life was shattered as we knew it. At the beginning I looked at this like all of the beautiful things are coming apart, breaking to pieces. Now, I look at it as a painting of hope, of putting things back together - even more beautiful than before. She is not selling the original, but you can purchase prints of “Shattered” here.
This past June, Anneka made a cape for her project for Modified Style. She embroidered it, hand beaded it, and it was her favourite project she has done so far. Happily, the auction for it went so well she was inspired to make more!
Anneka had a booth at the Portland Village Craft fair this year to sell her art and embroidery and capes, and she had a great time.
Jayla was Anneka’s fabulous model for her dress, belt and cape!
Anneka at craft fair!
Anneka also offers custom capes so if you are interested in that be sure to contact her.
Here are a few of her designs, she made all of these from recycled or vintage fabrics, sewed them together and embroidered them with her own designs.
All of these capes are lined, one size fits most, and you can purchase these beautiful, one of a kind, handmade capes right here.
Thanks for supporting my super cool kid in her artsy endeavors! Art heals, art saves lives.