Well that was a long summer with many goings on, maybe too many to mention! I could probably write an entire post about each of these things, but in the interest of time, I'll try to keep it concise. And because I'm OCD organized, I'll go in chronological order. You're welcome.

First, the house. Believe it or not, we never took any good pictures and now the grass is not really green after this super dry summer, so all you get is the tiny picture we were sent when we first heard about the house. We moved in June 1st, a very hot day indeed, and the house is truly wonderful but it did not have AC. So we melted the first few days with just fans and cold showers, but otherwise it was great. My parents came up to help which was much appreciated. In true Mel fashion, we had everything unpacked and setup pretty damn quick, probably within the first week. Quick enough, the kids started begging for us to go get kittens immediately (since we'd told them we could get kittens after we were moved in and settled). So we got these adorable little munchkins. The calico is Princess Buttercup and the cream colored one was Fluffy Tuna.

Then that crazy record-breaking heat wave hit. Growing up in the middle of the desert, I saw my fair share of 110 degree days. But it hit 116 here! Not sure I'd ever been in that temperature but I hope I never have to feel that again. Ugh. Thankfully, we'd bought a portable AC to get us through until we could get a central one installed but since those only work to cool off one room, it meant we hung out a lot in our bedroom and the boys camped out on our floor for several nights. But we survived and it was actually a good experience as we are now acclimated to much warmer temperatures in the house. So even though the new furnace and AC were installed a couple weeks ago, we've barely used it.

Not long after that, the kids left for Nevada to spend the WHOLE month of July with their grandparents. They had a ton of fun and we were super grateful that our parents are all able and willing to spend so much time with their grandkids. Brian and I used the time to do a lot of hiking and some serious relation-shit (that's relationship shit) work. It was time very well-spent, especially as we celebrated 20 years together (18 married) on July 12th. That's a long time peeps, and lemme tell you, it doesn't get easier. It's totally worth it, but you gotta put in the work if you want it to be good.

Right before the kids came home, we realized the kittens had ringworm (annoying, itchy, fungal skin thing, not worms thankfully!) and they had passed it to us. We've spent the last month and a half obsessively cleaning our house, clothes, furniture, towels, sheets, you name it, we've cleaned it. We even isolated the kittens on the catio (that's a fully, cat-friendly screened in patio...this house is awesome) for most of the time to cut down on everyone's exposure. It has been a HUGE pain in the ass, even if my house is cleaner than ever. That on top of the respiratory infection, ear mites and possibly parasites they had when we first got them, I feel obligated for a friendly little PSA....don't get cats off of Craigslist unless you're prepared for all of that mess.

A few days after the kids came home, Sebastian had his first easy check-up of just an ultrasound and labs and passed with flying colors yet again. All of his check-up results have been so steady, his oncologist finally changed them to every 6 months from now on instead of every 3. I can't even find the words to express my joy and gratitude. Seriously, just wow, big, huge, yay!

It was good we had that dose of happiness, because life being what it is, always throws some fucked up shit our way. Two weeks ago, our adorable little Mr. Tuna was taken from us. He was ran over by a car, right in front of Brian and the kids. I saw the aftermath, which was poor Tuna retching, screeching, and dying. It happened so fast and was probably the most terrible thing I've ever seen in-person. The person driving didn't even slow down or anything! Brian even spoke with them the next day (it was one of our neighbors) and they insisted it couldn't have been them but since Brian saw the whole thing, he knew what car it was. We've seen that person driving by many times since then and they are always going too fast and not paying attention.

So now we're traumatized from witnessing that and losing a pet so soon and so young, he was only 4 months old. We didn't feel ready for another loss, not that you ever are really. It's been a bit over 2 years since we lost our dear Greyhound, Ginger, and it took that long to even feel ready for another pet of any kind. And getting cats, we thought, hey they can live a long time, we should get at least 10 years before we have to deal with that kind of loss again. Pshh wrong, wrong, wrong. Fuck you, universe. 

RIP Fluffy Tuna. You were the coolest cat ever and we will always miss you dearly.

But life plows on forward, clumsily and painfully at times, but constantly moving on whether we're ready for it or not. So here we are, dealing, and hoping for happier days. Which the current state of the world isn't wanting to grant us easily! I'll just keep trying to find happiness in my own little corner of the world. Which isn't too hard really with this bunch of goofs I live with.

Huge thanks to everyone who donated to the NF walk this year. So appreciate you all!

Oh yeah and school finally started. After an entire year and a half of remote learning, our children are finally back to in-person school and they are loving every minute of it! Oscar started 2nd grade at Elmonica Elementary and Sebastian started 6th grade at Five Oaks Middle School.

Well that was a little bit of information about a lot of different things so if you're interested in hearing more, just reach out to chat. We'd love to hear from you. Hope your summer was a bit smoother than ours was and that you're happy and healthy.

Hugs and Love,

 

That's right peeps, last month gave us another clear scan for Sebastian! Hell yeah! Let's just take a moment to say thank you to the universe, fate, chance, goddess, god, flying spaghetti monster, or whatever you may believe in. "Relieved" doesn't quite cover the emotion for us. Each of these check-ups is filled with pain and tears for Brian and myself, even when we're confident it will all come back clear. It's scary to have to give your kid radioactive iodine, even though they say it's "safe". It's scary to put him in a machine that emits "low-dose" radiation, but takes over 200 images, so how low-dose is that really??? It sucks big, hairy balls to have to relive the fears and doubts of last year all over again. Yeah it all sucks. So "relieved" is just too mild of a word to express how we feel each time this comes back clear. Maybe SO FUCKING ECSTATIC is better.

 

This mibg scan took another 3 freaking hours just like last time. Only this time, it wasn't because he wiggled too much, it just took that long to get everything just right. What a badass kid we have on our hands that can sit through that nonsense without any sedation or too much complaint. They give him breaks and such but still. Most adults I know don't even go through an hour long scan without some sort of drugs to take the edge off. They offer sedation but since he's done so many scans in his life without any, we never say yes to that. Seems best to reserve the hard drugs for surgeries and procedures where it's really necessary, especially for a child.

 

But still this scan makes us nervous with the radioactivity mentioned above. People with NF are advised to keep their exposure to radiation to a minimum as it appears NF may make them more susceptible to the ill effects. Whether it does or doesn't, most people with NF end up getting WAY more imaging in their lives than the average person does, so it makes sense to limit it wherever possible. We bring it up every time they want to do any type of scan that involves radiation (mibg, CT, X-ray, etc.), but are usually met with the "this is necessary" answer. I get it, I do, they don't have a better way to check his body for neuroblastoma cells. There's blood work and urine tests of course, which they also do every time. But the mibg scan is the best way to be sure.

 

Now, however, we're at a year out from surgery. So we were hoping and thinking he wouldn't have to do these every 3 months at least. But his oncologist said she would like to keep doing check-ups every 3 months, because if this had been a regular neuroblastoma tumor (as opposed to the very rare, composite pheochromocytoma with patches of neuroblastoma that it was), she says they would still be doing check-ups and imaging every 3 months. She is, thankfully, good with switching these to ultrasounds. Yay for ultrasounds! No radiation, much faster test, and way, way, WAY cheaper (as if I'm allowed to worry about money during this shit). At a year out she said she'd want another mibg, but when I brought up the radiation concern again, she listened, thankfully, like the good doctor and human that she is. She'll discuss it with the tumor board I'm sure, but said she'd be okay with just doing an MRI at a year out as long as all all his lab work and ultrasounds stay clear. Can I get another hell yeah???

 

So while we're on the topic of NF, we have registered Team Sebastian for this year's NF walk in Seattle, WA, as sadly, Portland no longer has one. Their plan is to have an in-person walk and a virtual option, so for those of you who are too far away to make it to Seattle in August, you can still join virtually. If you'd like to join our team or donate, you can do that at the link below. I'd also ask any of you who are in the sharing mood and are on social media to please share this link for us. The Children's Tumor Foundation (CTF) is an amazing organization and perfect for anyone looking for a worthy non-profit to donate to, even if they don't know us or anyone with NF.

https://join.ctf.org/TeamSebastian2021

 

Life is a bit chaotic right now as we are in between houses, so that's all I have for you today. Next post will bring you some more interesting stories from our family adventures, as well as pictures of our new house! I am seriously looking forward to the move being over and life to calm back down, and it does look like lots of clear skies ahead of us. So until next time, stay safe and healthy and enjoy this beautiful spring!

 

 

Hugs and Love,

Exactly one year ago, I was anxiously watching Sebastian sleep in his hospital bed in the Pediatric ICU after his 4 hour long surgery to remove his tumor and right adrenal gland. If you've had to experience your child having a major surgery, then I'm so sorry and you understand how miserable it is. If you haven't, I sincerely hope you never do. Seeing your kid afterwards is both a huge relief and incredibly scary, to see them when they're hooked up to a million tubes and IVs and pale as a ghost.

Look at that poor kid! Yeah that's right, that's an IV line in his NECK. It was placed there while he was under anesthesia, before they started the operation, in case his heart rate or blood pressure fluctuated too much. This way they could inject medicine into that, which would reach his heart faster and potentially save his life. Thankfully they never needed to use it. But they had to leave that in for a couple days after the surgery as well, just in case. This was a necessary precaution as adrenal surgery can be somewhat dangerous and fluctuations of this sort are pretty common, during and after surgery. It was also why he was on that insanely expensive pre-op medication, to help suppress all the extra adrenal hormones the tumor was producing. It was clearly an uncomfortable place to have a line, and Sebastian was afraid to turn his head very much. It was a huge relief that they never had to use it and when they were able to take it out!

That wasn't actually the most concerning line he had in. He also had an arterial line, which is a thin tube right in the side of the wrist, to give a constant reading of his blood pressure to monitor for any fluctuations. The problem with it was it would alarm anytime he adjusted his arm, even a tiny bit. The first time it happened I almost panicked because it showed his blood pressure was crashing. I not-so-calmly asked the nurse what was going on and she immediately fixed it and took a real blood pressure reading from the cuff that was also always on his arm (for further readings once an hour). I spent that first day constantly adjusting his arm to make the alarm shut off. Eventually we had to strap his arm to a board to make it stay in place. What a pain in the ass, and scary as shit for me the parent having alarms going off all the time.

So that was what I was doing on this day one year ago. Fearing for my child's life every time he wiggled his wrist. I'd of course noticed this anniversary creeping up the last couple of weeks. But it didn't hit me too hard until Sebastian started to bring it up the last couple of days. And then this morning around 8:30am I poked my head in his room to make sure he was on his class Zoom meeting, and he says, "Mom, like right now a year ago I was in surgery huh?!" All the emotions washed over me and all I could manage to say was "yeah buddy, you were."

As I walked away, I took a moment to gather myself before moving on with my day, but there have been a few tears every time I think much about it. Tears of happiness, joy, and gratitude that he is alive and well and cancer-free, of course. But also tears of sadness for the me of one year ago. What I wouldn't give to be able to give that me a big hug and tell her everything was going to be alright. Because that is all I wanted to hear and the one thing no one could tell me with any certainty. It was a lot of "shoulds" and "probablys" and shifty talk like that. 

I get it, there are no guarantees in life. Any of us could step off the curb at the wrong time and get ran over by a bus. Or die from the flu, COVID, or whatever other new disease we manage to create through our disgusting habits. It happens. I know. Life is short and precious. This year has been another brutal reminder of that fact. We've lost two people we knew to COVID this past year, one of Brian's uncles a few months ago. And just last week, a very close family friend of my parents. A wonderful, sweet, amazing woman that I've known my entire life. She recovered from COVID but the pneumonia came back and took her from us. Yes they were both in their 70s and had preexisting conditions, but damnit, that doesn't make their lives any less than the next healthy persons, so their deaths are still a goddamn tragedy.

Okay shitty year rant over, back to gratitude. That's what I keep reminding myself to focus on. Not all the terrible shit that's happened, and still happening, but all that I have to be thankful for, which is this boy right here.

And his amazingly healed scar.

And the rest of my beautiful family. Happy and healthy and excited to move into the house we bought! I'll tell you all the details about that once we're in it and I can share some pictures, but we don't move in until June 1st, and it wasn't listed publicly so I don't have much to share with you at the moment. It's less than 4 miles away, still in Beaverton, and in a great location. It is a similar size to our current place but has a really perfect backyard. We can't wait to get in it and start a new garden.

Sebastian's next check-up scan is April 22nd and his follow-up appointment where we will get results is the next afternoon, so I will write another post after that.

And one last piece of gratitude to mention, which is you, for your love and support. Thank you friend!

Hugs and Love,

Dearest Friends and Family,

Congratulations, we did it! We made it through the most collectively hellish year of all years in recent memory. I hope your 2021 is shaping up better than last year at least. Not that 2020 set the bar real high, but still, anything better than that will be an improvement. Ours ended exceedingly well, especially considering all the ways it could've gone wrong. And this year is looking up!

Best news first, Sebastian had his last check-up of the year right before Christmas, this time just an MRI and some lab work, but all was blissfully clear! He will need another check-up in April, around a year after his surgery. This will need to be another full-body mibg scan. For those who didn't hear about the last one he had in September (which was also thankfully clear) it took about 3 hours! Ugh! He's such a trooper, I can't imagine being in one of those machines for that long. It was a new technician so it was already going slower than the first he'd had, and then Sebastian wiggled a bit too much and they had to re-do a whole section, so that dragged the test time out significantly longer than we were expecting. But worth it to hear that it didn't find any neuroblastoma cells, so he is still cancer-free! Assuming his next check-up is also clear, then we'll be able to go to check-ups every 6 months instead of every 3, alternating between MRIs and the full-body scans.

Next good news, is that we were lucky enough to have our parents come and visit us over the holidays. First my parents came for Oscar's birthday (Dec. 22nd) and Christmas and then the week after that Brian's parents came for New Years and my birthday (Jan. 1st). The boys didn't enjoy me making them quarantine before that, but it was worth it to get to see their grandparents and to not have to worry about getting anyone sick. Thankfully everyone stayed well and we all had a wonderful visit. It was so comforting to get to see family after such a hard year, it really meant a lot to all of us to have that time together.

Another bit of news is that we are house hunting. After almost 10 years since we had to short-sell our condo in Reno, we are finally feeling recovered enough from that experience to attempt to buy again. Of course our timing isn't wonderful, yet again, because the housing market is stupid expensive and competitive here in Beaverton where we're looking, but since interest rates are so amazingly low, we figure it is worth a try. So happy thoughts for the right house to come our way soon!

And lastly, we are still off of social media and enjoying that. So that means if you want to stay in touch with us, you'll have to do it the old fashioned ways: email, text, phone, or if the world allows, in-person! Let us know if you don't have any contact information for us and we will be sure to send some your way.

Oscar made that for me out of his legos at Christmas. It really got me. So I wanted to share it with you. I love you. Thank you for being here and reading these words and for sending your love and support to us through this past, very difficult year. 

P.S. If you've signed up for the email newsletter and have not received any emails from us, please check your Spam folder!

Hugs and Love,

Well it's been over 6 months since I wrote a blog post. I'm guessing most of you follow either Brian or me on social media and you've probably seen all the updates in that time, so I'll keep it brief. The short story is that Sebastian's surgery back in April to remove the tumor and his entire right adrenal gland was a huge success and he is doing very well. The pathology report showed the tumor to be a "composite pheochromocytoma" because it had patches of neuroblastoma, which is malignant. This is an extremely rare type of tumor, so rare his oncologist had never seen one like it and had to reach out to specialists out-of-state for second opinions and data. Since there are so few cases of this, they don't know with any certainty what to expect. So keeping a close eye on Sebastian with regular scans and lab work will be necessary for the foreseeable future. Thankfully, so far everything has been clear.

 

We are all hoping the worst is over and are of course extremely grateful that everything worked out and he is healthy and doing great. I am still a bit traumatized by the experience. Sebastian does not appear to be thankfully. So far, this kid is far more resilient that I have ever felt in my life. Which is amazing and wonderful. But since I have struggled with moving through the experience, I've been keeping my life pretty low-key and as stress-free as possible. Not an easy feat in this hellish year, but I've been doing my best. In some ways, it's easier to do now than ever as I have all the excuses I could ever need to stay home as much as possible. It's been nice in a way, for an introvert like myself.

I have been trying to be patient and give myself the time I need to grieve for my shattered reality that is forever gone, which is the main reason for no posts here. Since my poor brain has been wrapped mostly around Sebastian for months, and I wasn't feeling emotionally stable enough to write about the whole experience, I chose to just not write, or even sing with Brian, at all. There was no motivation to write on other topics, and obviously there have been plenty of other things to write about in that time, but I couldn't muster up any creative energy. The events of this year, both globally, locally, and here at home, have left me in a very weird place. My empathy is at an all-time high so trying to follow the news or stay up on current events leaves me shattered. So I stopped reading the news, following politics, or using social media. I've found this to be incredibly helpful to my mental health. I intend to continue staying off social media for the foreseeable future. I don't have the emotional room to digest everyone else's political opinions right now. It's hard enough to sort out my own and do the necessary research so I can finish voting.

One thing I think will be incredibly cathartic is to get back to my creative endeavors of writing and music. So I've signed myself up for NaNoWriMo this year and am hoping I'll be able to write a short story about this year's experiences. I have no idea how well or not this will go, but I figure it is worth a try. Maybe something decent will come out of it and I'll be able to share the story with whoever is interested in reading it. And hopefully I'll start singing with Brian again soon.

So since I won't be on social media, please stay in touch in other ways. If you have my contact info, text or email me. Sign up here for our email list. I will still write updates about Sebastian on this blog and through the email newsletter. For the time being, he still needs check-ups every 3 months so that's about as often as you'll get anything from the newsletter so you don't have to worry about it being too many emails. I care deeply about you and hope that you and your family are staying safe and healthy. Thanks for being here and I hope to connect with you soon.

Hugs and Love,

We are very excited to share a new cover song with you. It's called Eyes to the Sky by Joseph. After listening to it, you might get why we chose this song. It seems apt, given the current state of things. We wanted to help cheer everyone up, at least a little. Every time I hear it, it lifts me up, reminds me not to let myself drown in my own despair. Even when, especially when, things feel overwhelming. Like now. Many people are overwhelmed by all the goings on. I can't say I'm unaffected by it all, I'm too empathetic to not be bothered by suffering, whether it's one person or thousands. But I'm still much more concerned with Sebastian than anything else. I don't have the emotional or physical energy to get overly engrossed in the rest of the world right now. I don't even care if that sounds selfish because I know it's OK. This is one of those moments in life that I am allowed to be selfish.

I'm trying to be here, in this moment. To lean into this pain and not run away from it. To learn from it and let the experience strengthen me. But fuck, it's hard. It's a lot easier to push it away and try to not think about it. To be angry at the universe/fate/god/what-the-fuck-ever, for bringing this shit into existence. I am not religious nor do I believe in any traditional idea of god. I almost wish I did because then at least I would have someone to blame, somewhere to direct my anger. But I don't. There is no god to blame, no devil, no boogeyman. There's just life and death, joy and suffering, light and dark. There's always an opposite trying to balance out everything. So no matter how upset I feel over the injustice of it all, I remember that there is hope and love in the world as well.

So when I listen to or sing this song, I think of lifting myself up. Of lifting you up. Of helping you and me rid ourselves of our despair and instead turn to hope and love. To embrace this life for all it is and all it's trying to teach us, especially in the worst moments. What I am learning from this experience is a reminder that while I don't have faith in any god, I do have faith in people. I have a strong belief in the inextricable power of human connection. You could call that connection "god" if you want to, but to me, it's nothing more or less than love. All my belief and faith comes from the love all the wonderful people in life have shown me, especially recently. Through your kind words, thoughts, prayers, and energy. Through your willingness to help. Through your ability to listen or read this or hug me while I cry.

I also have faith in all the doctors and nurses...that they are and will continue to do their damn best for Sebastian. I have faith that no matter what happens, Sebastian will continue to live a full and happy life. That NF will never bring us something we can't handle, because we have all of these wonderful people in our lives willing to help us through. We really are all in this together, even when we're alone.

From the deepest part of my heart to yours, thank you.

Hugs and Love,

In the past 6 weeks, Sebastian has seen a geneticist, 2 dietitians, oncologist, cardiologist, surgeon, and nephrologist (twice). He's had an x-ray, ultrasound, MRI, EKG, echo-cardiogram, and multiple lab tests. He even had to have a baby tooth removed at the dentist. (Because everything goes wrong at the same time of course.) He did a 24-hour blood pressure test that he was not a fan of, and who can blame him! We took his blood pressure and logged it everyday for over a week to give his doctor the data she needed.

Aside from taking his blood pressure, we thought we'd get a break from talking to doctors and worrying about this while we were on vacation last week. Before we left, we'd even heard that the insurance had approved his medication already so I thought we were in the clear. But I was wrong. About halfway through the trip, we got a call from the specialty pharmacy that was filling the prescription saying that the month's quantity the doctor had ordered would cost us $4,900....after insurance. We tried not to panic, but holy fucking shit dude! Goodbye savings account was my first thought. They tried to call around to find a foundation or assistance program that would help us cover it but were unable to find anything. Turns out the doctors always request more than they need when they have to get prior approval from the insurance for a specialty medication like that. So thankfully the doctor lowered the quantity to what we actually needed, bringing our cost down to the bargain price of about $1,100! Better than what it was but still... I've had many moments of why the fuck do we still live in America?!

So before you tell me I should check GoodRx or some patient assistance program or order it from Canada, let me tell you, I already tried all that! GoodRx does not work for specialty pharmacies. Regular pharmacies do not even carry specialty drugs, I called several to make sure, and the ones I called had never even heard of the drug. I Googled around for quite awhile trying to find patient assistance programs and all the ones I found are either only for certain drugs, common ones of course, and/or they have income guidelines that we do not qualify for.

I did my research on ordering from Canada and what I found out is that it's not actually legal to do that. Those online pharmacies you find that say they are in Canada are quite possibly a scam. Anyone can put up a website and say they're based somewhere, that doesn't make it true. Most of these places are being sourced from many different countries so there is absolutely no guarantee that what you order is what you get. They are not requiring a prescription which was my first giant red flag that it may not be safe. It'd be one thing to test out this theory on my own body, but I am not gambling with my kid's! Plus this isn't like taking some basic medicine. This shit is an alpha blocker that seems to be only for this specific scenario as it blocks the extra adrenal hormones that the tumor is producing. It is quite dangerous for anyone that does not have a hormone-producing adrenal tumor. As far as we've been told, this is the ONLY way to keep him safe during surgery since operating on an adrenal tumor can cause surges of adrenaline, making his blood pressure and heart rate dangerously high. Back in the day, people used to die when surgeons tried to remove adrenal tumors because they didn't know how to prevent this. Now, thankfully, they do but it's not with your everyday prescription.

Just what you want to give your kid...

On top of the cost, is the awesome side effects. We are to expect him to suffer from:

• Congestion
• Fast heart rate
• Low blood pressure
• Dizziness, especially when standing up
• Drowsiness, feeling tired
• Decreased appetite

So in other words, he's going to feel like shit. And we actually want him to feel some of this because it will show us that his body is responding to the meds, which he needs to do before he can safely undergo surgery. To counteract some of the symptoms, and for additional safety, he has to drink a MINIMUM of 83 ounces of fluid a day and increase his sodium intake quite a bit. This is to help raise his blood pressure since it is currently normal. Do you keep track of how much water your kids drink? Because our estimate is that normally he was only drinking maybe a 1/3 of that. The doctor warned us this was coming so we have been working on increasing it and are currently at maybe half of that. Thankfully we still have another week before he has to start the meds.

The schedule the nephrologist created has us slowly increasing his meds for 2 weeks before surgery, which is scheduled for April 7th. We will take his blood pressure and heart rate everyday while he's on the meds and we'll take him in for at least 2 check-ups during that time and be in close communication with her about any symptoms. If he ends up with too many issues, she will change how much or fast we increase the meds. The damn pills only came in one sized dosage so it's a little tricky. Fingers crossed his body can handle this without too much discomfort. He will be admitted the night before surgery so that they can load him up with extra fluids to help that blood pressure stay stable. After surgery he will have to be in ICU for at least 24 hours so that they can closely monitor his blood pressure and heart rate. His body will need a bit of time to adjust to suddenly not having the crazy high amounts of adrenal hormones that the tumor is producing. He'll also need to adjust to only having 1 adrenal gland since the surgeon thinks she will need to remove the entire thing since the tumor appears to have taken it over (it is over 2 inches in diameter so pretty big for such a little kid).

While we were in Maui, we saw and heard very little about COVID-19, so it was a little bizarre to come home to a world in chaos. Schools, rec centers, libraries, and many small businesses are closed. And now the school closures have been extended until the end of April! While I'm totally struggling with how to handle homeschooling my children while working full-time from home, I'm also very grateful that Sebastian will not have to go to school while on this medication and that he won't miss any school from the surgery. He should be all healed up by the time school is open again.

While the world is freaking out about toilet paper and bleach wipes, I'm on a whole different level of worry and freaking out. I haven't given COVID much of my energy, it's all going to my little boy. I'm giving the universe all that energy, good thoughts, and positive thinking that his surgeon and the necessary hospital equipment will be available for him come April 7th. That his body can handle the not-fun medication. That we can get him to drink enough fluid. That the surgery goes smooth and safe and 100% successful. And that the surgery and that first day in ICU does not scare me into an early grave. That he recovers quick and without too much pain. That this is the worst thing his NF ever throws our way. Maybe that's too much wishful thinking, but I'm wishing it anyways.