A typical lunch for me - sandwich, peppers, hummus - and homemade pizzas with the kids.

Homemade (healthy) baked donuts! And some little valentines “love bug” cookies that H took to school for his friends.

Blueberry muffins - I still make multiple dozens of these per week. Derrick has had a wild obsession and I’m just happy he’s eating so well.

A tray of stuffed peppers and cookies for a meal train food delivery.

Potatoes Romanoff & delish valentines steaks.

Still kickin it on the walking pad, plus a 20lb vest for as long as I can tolerate each morning when I start work. I got derailed on the fitness side of things last week by a few illnesses/flu and had to take the week off for childcare - it was a rough one - but we past it, ladies, and we movin’ on.

Bad bunny kicked ass at the Super Bowl. It was everything. I love that man.

Valentine’s Day was cute! Did some crafts and got some little gifts for the kids. B and I made some delicious steaks with potatoes and green beans after the kids went to bed. Someday we will have a fancy dinner out, but this year it didn’t feel right. Staying home was nice.

I also gave the kids the hand made blankets that I’ve been crocheting them (for like a year+). That project got massively derailed when Derrick got diagnosed and it feels so good to have them completed. They both now use them to sleep at night in their beds - I made them big so they would be twin size+ - and it makes me so happy to see them all snuggled up cozy in my blankets.

Also! I randomly went to dancing with the stars live thanks to the Ronald McDonald house. They gifted me two tickets. Not something I would have done for myself but it was a really nice night out. We need more of those in our lives.

I’m walking consistently, eating thoughtful and wholesome foods, eating at a bit of a deficit, and hydrating as much as possible. Sleep is still a little broken at night with Derrick waking and wanting me usually around 2am but it’s alright; could be much worse.

The weight chart here looks quite dramatic, but I was about 10 lbs above my original goal. Now I’m 2 lbs above original goal, but I want to work my way back down a bit lower. I figure I’ll set a new goal once I get back into the goal range I had set. Still, I’m 80+ lbs down from when Derrick was born, and that is awesome. I think 15 more lbs would be the max I’d wanna lose. I’m curious to see what my body looks like at that weight, at this age. 💪🏻

What I desperately need to do is include some strength training. I know it’s a major piece of the puzzle that’s missing and I haven’t tackled it yet. I think I’ll start actually with some Pilates — not proper strength training, but something to strengthen my core and something to mix up the routine. My SIL shared her Apple fitness+ with me and i haven’t used it yet. Why?? No good reason! I will try it out today and check back here. Accountability and all that.

Hope y’all are warming up and getting through these long winter days! Xx

We got about 20” here in the PA mountains. We hunkered down just like everyone else. Lucky we didn’t lose power, though we have a whole house generator so I’m never too concerned about that aspect. Brendan was especially thankful we recently inherited a snow blower. That thing works like a champ!

Today it’s back to somewhat normal - I’m working remotely and B was able to get to work. Slow and steady on the roads, but things are clearing up. Major highways are fine. Hoping all my tumblr friends made it through the storm. Sending warm thoughts to you all.

December brought yet another hospital remission for poor Derrick - he ended up with a central line infection. Readmitted for ~3 weeks with a discharge date of 12/23. Home just in time for Santa.

Christmas was fantastic - having the four of us home together was the best gift we could have received honestly. The kids got new beds - they are stoked and D is sleeping really well in his. It’s hard to believe he’s such a big boy now. The baby is gone. He’s learning to speak in little sentences now and says “I love you” ALL the time.

D was also readmitted for another stem cell infusion from January 8-10. Luckily for us it was a short visit. Right now we’re in an in-between zone. It’s too early to tell if the stem cells “worked” the way we need them to so for now we’re sitting tight and enjoying the time home together. Every single day is such a gift. It doesn’t ever get old for me. At least not right now.

While we’re home, we’re now going to outpatient visits for D once a week (which used to be twice a week - so that’s a big milestone). Otherwise I’m able to work remotely every day pretty much while my mother-in-law handles childcare (when it’s reliable, but that’s another topic). WFH means I’m getting in walks on the treadmill during the week. That single habit really turns my whole day around. That, and drinking as much damn coffee as I please.

Holden turned 5 this month! It’s hard to believe and awesome to watch him grow. He’s starting to read.

Last weekend I baked my absolute ass off. Pumpkin oatmeal muffins topped with chocolate chips/pecans, turkey chili mac, my kids’ favorite applesauce blueberry muffins, and baked apples (which Holden and I picked ourselves). Some weekends I cook/bake nothing. Some weekends I do everything. It’s all a balance.

We’ve finally got some good news rolling in for D.. recent chimerisms show his immune system at 98.5%/99% donor. Amazing. We need to get him to 100%, but fuck. After dropping down to high 70%s when getting readmitted in mid-August, this is big. I’m trying to balance between getting too excited and not celebrating at all. Take the W but keep my eye on the prize.

Holden is progressing with soccer. He still gets really bent out of shape when things don’t go his way but he’s focusing well, listening to coach, and becoming a better team player. It’s good for him. He seems to love it, so I hope we stick with it.

Fall weekend vibes.. 🍂 ⚽️

Sunflower festival

Ice cream date feat. pumpkin pie ice cream

Solo run (holy sore calves!)

Lunch packing season has begun

First soccer game of the season

Back to school season is upon us. Holden of course is stoked to be back at school. It’s not lost on me that I’m lucky to have a little guy who loves school. I love that he does. Before starting school, I took him to a big water park not far from us. It blew his mind and we had such a fun day together.

D-money has been recovering from a big week last week. He had 5 days of chemo, a single session of radiation, and then a stem cell boost infusion. Brendan had a hell of a time recovering from that donation but he’s on the mend now. Derricks counts were climbing but now have started to drop. We’re being told at this point not to worry - it is likely totally normal and a response to the chemo. Sitting tight. Hard not to worry.

My heart is absolutely shattered. Just, broken. Mostly it’s aching for my kids. We had to explain to Holden why mommy and Derrick didn’t come home last night, after we had told him that we were all now home together (unless of course Derrick got sick again). I didn’t think that ‘unless’ would come so soon.

The path forward is heavy, dark, uncertain, and bound to be extremely difficult. More chemo, radiation, stem cells. It’ll be hard on poor Derrick and his tiny body. The doctor who has led us this far thinks he can do it, but it’ll be hard on him. We cried together while she told me about the plan she and the larger team here are creating. She told me of another little girl in a similar situation who is now 7 years out from her diagnosis and doing well.

We’re home!!!

My goodness, it’s been a whirlwind. I haven’t updated in FAR too long.

Derrick had his stem cell transplant on June 10th. Recovery was as heartwrenching and as difficult as anticipated but he’s an absolute champ. The procedure went really well overall and we’re now at day transplant +65. 🤯 He celebrated his 2nd birthday in the hospital and we got the best birthday gift we could have hoped for: the next day we finally were cleared to come home. For what will hopefully be the last time. It’s been since December 17th. So many months of inpatient treatment. It goes without saying that it’s been a monumental adjustment coming home with all of his medications, keeping up with the 2x/week outpatient clinic visits, trying to get back to some normal semblance of a work schedule, and give Holden the attention he needs and deserves. All in all, it’s all good. As long as we’re all home together, everything else will work out.

Holden did 4 weeks of nature summer camp this year and he loved it. I’m glad we signed him up. Hard to believe it’s just a few weeks from the beginning of his school year?? He’s going to the same Montessori school as last year, so it should be a comfortable enough start for him. We absolutely love the school and teachers. The entire community.

I’m getting my workouts going again, after such a long hiatus. I’ve not had any real personal autonomy, let alone the freedom to decide when to workout or have any real routine for myself. Getting back to that feels good, even if it’s baby steps. I quietly celebrated a year of sobriety from alcohol at the end of July. That mirror selfie is me, 365 days without alcohol. It’s been beneficial for me in every way.

I’ve grown closer to my core group of girls and have found their support invaluable especially with all the heartbreak and challenges presented to me this year. One of Derrick’s nurses has now become a close friend as well. I’m finding the blessings everywhere - turns out you just need to be open to them and it’s not hard at all to spot them.

In July, a local motorcycle club hosted a poker run for Derrick’s benefit. I’ve never been honored like that and it was absolutely wild. Mind bending. The amount of support and charity that has been offered to us has been nothing short of incredible. Local shops, restaurants, groups like the motorcycle club… we just got wind of two more events that want to include Derrick which will be happening in the fall. We couldn’t be more blessed with community support. It’s the exact reason we moved here and yet still I could never have expected it.

We’re good. We’re anxious and overanalyzing practically everything that Derrick does, probably just as we should be at this point. I’m being assured that’s normal and will wear off with time. But, we’re good. We’re happy to be home together. So ridiculously happy. It’s been hard on us all, but ultimately we all appreciate each other so much more now.

And because I couldn’t cram them into my last post, you get another post dedicated to my great obsession.

Birds.

From top to bottom…

Red bellied woodpecker

Northern rough-winged swallows

Great blue heron

Common yellowthroat

Common grackle

We’ve been living it up over here! We’ve been home for several weeks and have been trying to enjoy it - spending time outside, grilling, playing. B and I have still been working 2ish days a week each. Somehow both our employers are still super understanding and are okay with that. It’s what we can manage for now.

Being home with both the kids for Mother’s Day wasn’t something I was anticipating but it was beyond wonderful. We had a nice, normal day as a family. We hit the farmers market, lunch, and ice cream, and then spend the afternoon playing in the yard and grilling for dinner. Perfect. B and I even got to go out to dinner just the two of us the night before. We checked out this authentic Mexican restaurant and inn. It was incredible. Best churros of my life. Oh, and I taught myself how to do embroidery? I made that little thing for my mom in whatever down time I’ve managed to find. It was really fun & relaxing. I think I’m gonna try and make something for Holden to hang in his room.

Last night I ran a 5k with my niece — she is a part of an organization called Girls on the Run and they trained for a 5k which took place last night. She was going to run it with my brother, but he’s been having a health situation also, and couldn’t do it. I was so excited she asked me to go. We got rained on, and we got muddy, and it was amazing.

Tomorrow brings a new chapter in Derrick’s treatment: radiation. B and I painstakingly considered every single option, from no radiation to whole brain radiation. We considered two opinions from both our primary care team and a team at MSKCC, a very highly renowned cancer center in Manhattan. After a lot of discussion, thoughtful consideration, and many tears, we landed on a decision. So Derrick will be getting two weeks of targeted photon radiation to his inner auditory canal — this approach should minimize chance of relapse from the one remaining mass in his auditory canal while sparing him from some likely devastating cognitive side effects that radiation to his brain would bring.

Radiation over the next two weeks will be once a day from Monday - Friday. We will have to drive to the hospital every morning (2 hours each way) and he will go under anesthesia every morning. We considered staying at the Ronald McDonald house during our outpatient radiation treatment but with sleep being so precious, it will probably be best for Derrick and us to sleep in our own beds. We will see. Keeping fingers crossed that we’ve made the right call and that he won’t have awful side effects. It’s low dose. But it’s radiation. Scary.

After the 2 weeks of radiation, we will go back to the hospital for inpatient admitting on/around June 2 for transplant prep. Actual transplant day will be June 9 or 10. It’s going to be a long journey, and probably a difficult one, but it’s his best shot at long term health and remission. There’s nothing we won’t do for this little guy.