What DO you do when life throws you a curve ball? I guess that depends on you. Looking back at 2020, it seems like our family did everything we could to throw it right back.

I haven't posted in a while. I hadn't forgotten, it's just that each time I sat down to write something, it didn't feel like the time to do it. I didn't want to force something out that didn't come out on it's own. But it feels right, now.

2020 was a hell of a year, for all of us, for everybody. I hope you made it through okay, I hope you found your way to cope. Things were quite different for our family to start the year, and we responded by changing things even more. I think we subconsciously made some big changes to give us something else to think about besides Landon's diagnosis. And I think it worked. Things are different around here...

 Soon after we came home from BCH, we were hit with a major bout of the "Life is short, live it" mentality. We had always talked about getting a camper and travelling during the summers, but it was one of those things that was going to happen at some indefinite time in the future. We realized it was time to do it. So before February was over, we did. Enjoy some pictures of our many trips this summer.

To keep spirits high and the smiles coming, in April we began to search for a dog. Soon after, we adopted Luna! She's a beagle mix, originally found in TN with a two-week old broken right rear leg that had already started healing crooked. While you can see the results of the injury, you'd never know by her energy or speed. She's 1 year old now, and she's a good girl! She loves being in our family, and we love her too.

Even though taking a steroid for about a week of each cycle makes Landon hungry often, it still wasn't enough to keep enough weight on. We avoided getting an NG tube until it was pretty much unavoidable. It wasn't fun managing it, but it was worth it in the end...Landon gained 10 lbs in a couple months and looked and felt much better. Then one day, after sneezing 4 times in quick succession, it was out! That turned out to be timely, seeing as how it was due to be removed soon after anyway.

This was a tough decision for us. As we had all year, we were erring on the side of caution when it came to Landon's health, given his immunocompromised state. We were going to defer school for one year. Two things changed our minds. First, his oncologists assured us that it was okay for Landon to go the school, even with Covid lurking about. Secondly, we were driving someplace one day in August, and out of the blue Landon said something that started with "I'm excited that when I go to school...". I don't even remember what he said after that point, Amy and I were already looking at each other, realizing we were about to change our minds.

He loves school and he's doing really well. Also, it's seems much better than him staying at home all day, not socializing, and consuming media all day. It's not a perfect situation for many reasons, but we are making it work. You can tell he loves it, just look at his school picture. :-)

As if everything that was already going on wasn't enough, we decided it was time to move on from our first house. This...was all-consuming for the entirety of the fall to the new year. Preparing a house that wasn't quite ready to be sold just yet, purging and packing, while finding a new place and getting everything there and unpacked, right before Christmas? Recommended for anybody who wants to be incredibly busy while not being able to think about much else! 👍👍    ⭐⭐⭐⭐⭐  

We love our new place. Luke keeps randomly saying "I like our new house". Probably most importantly for the kids, they gained a pool, as well as the ability to play more safely in the front yard...we live near the end of a dead end street with a turnabout at the end.

I would be remiss if I didn't drop a huge thank you to everybody who helped get us here. Sometimes it takes a village...this time it took people from many villages to make it happen. Thank you all!

As you could see from some of the previous pictures on the site, Landon lost his hair as part of the chemotherapy. It's been slowly coming back throughout the year, to the point when he finally needed a haircut. We told him that he could choose whatever kind of haircut he wanted because he had to go without it for so long...not thinking about or expecting the kind of answer we might get. :-)

With that, I give you...Landon's blue mohawk!

Looking back at this year, I'm glad we were living in the moments and not looking for the larger perspective. We weren't seeing how he looked as a kid in remission, we were seeing our sons growing up, and living our lives. We saw things as we wanted to, while managing how things were. 

​I think it's worked pretty well so far. :-)
​ 

Hello everybody!

I took a bit of an unintentional break from updates. It probably has a lot to do with going from sitting around in the hospital to return to, well, real life I guess. There was a lot of time to be concerned about just one thing in December. Now, besides the ongoing chemo, there is work, all things associated with owning a house, family, etc. I'm not saying it is overwhelming, it's just life. Life fills the time up quick. Then, it was March. March 5th, actually...3 months after the original diagnosis, incidentally.

I've been home with Landon for about 2 weeks now. He is through what was the last toughest part of his chemo...if all goes to plan, it gets easier from here. He had 4 intrathecal chemo injections (spinal taps) over 2 weeks in the last phase. Now they are spaced 9 weeks apart for a while, and then 18 weeks apart. Our trips to the Jimmy Fund Clinic are on most Fridays...at the beginning of each 3-week cycle, and also separate 2-week cycles for chemo that can only be administered at the clinic. They can overlap, giving us a break from the drive up to Boston.

Landon has been adjusting well. His strength and good spirits have rebounded pretty well and continue to improve. He has had playdates, been to the playground and library, been a mini-mall rat, and gone on errands with us often. We are still wary about some places with a lot of little kid contact (our local trampoline park, for instance), but that will come with time.

Our tentative timeline for returning to daycare full-time is still March 30th. It might seem a little early, but we are actually encouraged by his doctors to get him back to school. They have found that a return to developmentally appropriate activities supercedes the risk of getting sick during therapy. Once the Jimmy Fund Clinic sends down their school liaison to perform a puppet show to prep the kids for Landon's return, we hope to ease him into it with some half-day visits. So, we are close to  almost-normal again.

Things are alright. :-) 

I have some other things I've been meaning to post, so be on the lookout for some more updates!

...and we're back.

​We've been home 14 days and it's been a transition for sure. There are a lot of cogs that need to mesh to make for some normalcy. We've had to put all the pieces back in place that were separated the last month. Nothing we can't handle thus far but it takes a little time, and a little more time to handle it isn't surprising. Finally though, the family is back together under one roof.  

Where does that leave Landon?

To start, he is considered to be in remission. This is great news! But, it doesn't change much besides our location in relation to the chemotherapy that he will continue to receive for the next 2 years or so. 

Landon is on a fairly strict two year plan. Every drug and procedure has been laid out for us over those two years, in cycles. After the first three months or so, the length of each cycle will usually be 3 weeks. Some of the chemotherapy will be given at home, some by a visiting nurse, and some has to be given at the Jimmy Fund Clinic in Boston. These will be mostly be outpatient visits, with the exception of a weeklong inpatient visit back at BCH soon. In general, the first week of a cycle includes a set of chemo drugs; the first week into the second week the drugs do their jobs; and the third week his body recovers. His blood counts will vary obviously, reaching the lowest point the second week and recovering the third week. He will be more susceptible to getting sick and will feel really lethargic during the middle of each cycle, depending on the drugs he is receiving in that cycle.

There are also conditions that, when met, means Landon will be admitted as an inpatient back at Boston Children's Hospital. I'm not going to go over all of them right now, but they are basically indicators that he may be getting sick as a result of a virus or bacteria. For instance, if he has a fever of 100.4 twice in an hour, or 101.4 at all, we have to call the doctors and ask them what they want us to do. Depending on where he is in a chemo cycle, he will have to be admitted to the hospital until they are sure he is well again. This is because his body won't be very effective in fighting the sickness on it's own. This also means we are not supposed to ever give him tylenol to fight a fever. Doing this will inadvertently mask how sick he may be. If the temperature conditions are met, we will call and ask what they want us to do. If he is mid-cycle, he will probably be admitted. If he is near the end of a cycle and his recent neutrophil counts were good, they may just tell us to give him tylenol and monitor the situation. To be clear, being admitted back to BCH in these situations means that they are monitoring him in case they need to step in as back up for his immune system, it does not mean that the leukemia has returned. Blood cultures, lumbar punctures, and bone marrow biopsies are in place throughout the treatment to check for that.

Landon is doing pretty well the last few days. I will add to the "Landon's Journey" page in a few days with an update about it, but I will say that he's moving around a lot more and has been feeling much more cheerful. We are "getting our boy back" as we were told we would. It's good to be back in a routine and we are ready to move on through and come out the other side.

The weekend doctor just stopped by for rounds. He brought up that it's Day 16 out of the projected 32 days since diagnosis until discharge, so we are halfway there.  I'm sure it was meant to be comforting, but my feeling was more "Man, only halfway??"

We've been here long enough now for the impact of it all to have sunk in. We have a much fuller picture of what the next few months will look like, including family/friend/work support, day care, and our home as Boston Children's-satellite-hospital-room. I've said it before and I'll say it again...given the circumstances, we are in a good place and we owe it to being surrounded with the very best of people in our lives. It's not going to be pleasant, but it could be worse.

There are a lot of experiences we didn't even think to expect, and I'm sure more are coming. I've started a "Things They Don't Tell You or You Don't Expect" entry that I don't know that I'll ever publish. Maybe it's best to find things out along the way instead of knowing what's coming and worrying about it ahead of time, especially when there isn't much you can do about them. I will say this though...for us anyway, the hardest part has been the effects that steroids have on an already stressful situation for Landon. Our mildly introverted little man is constantly being checked on by a steady stream of C.A.'s, nurses, doctors, social workers, liaisons, etc. Vitals have to be checked three times a night, waking him from sound sleep often. He undergoes anesthesia twice a week for spinal taps. Physical side effects have been minimal thus far, thankfully. As a result of all of it, sometimes he'd rather be alone than have the company of family and friends that come to see him. Who could blame him? The steroid, however, exacerbates this. Little things, little annoyances, become the biggest things and he just can't help it. We have accepted that this is part of it, this is typical, this is "classic behavior" for this cycle. But it can be tough to experience. It can be like he's a different kid. They tell us we will "get our boy back" when we get home, we just wouldn't mind him back now. You know, this smiley guy below. :-)

"An ambulance ride? What...is...happening?" 

This is where I found myself Tuesday night, looking down at him laying on the gurney, Landon looking as shell-shocked as I felt. It's alright, I said to him. Cool ambulance, right? It's alright, I said. I mostly believed it.

It had been a long 3 weeks or so. Landon was sick on and off, mostly on, the entire time. A couple of visits to the pediatrician, a couple of visits to Urgent Care, antibiotics, hives, tylenol, benadryl, persistent cough, pneumonia but maybe-not-we-can't-really-tell, prednisolone. Where was his energy? Where was his color?

After a blood test and X-ray was ordered and given, we went home. But not for long.

Another blood test was needed. The machine might have made a mistake when it analyzed the draw. We were told to go the ER right away. This...was disconcerting. Also, getting blood drawn again angered me a little. I absolutely hated watching him go through it the first time. Now twice in a day? 

The new tests confirmed it. Red blood cell counts low. White blood cell counts really low. Neutrophils, the wbc that works as the first line of defense against bacteria, zero. None.

Amy and I had just enough time to run home separately and grab some things. We were going for a ride.

By the time we were out of one ER, into another at Boston Children's Hospital, and into a private room, it was 3:00 am. That's a long time to be awake for anybody, even worse for a 4 year old. He was tired. He was drained. But, he was still patient. He was as tolerant as he could be. He was being so brave.

It was a whirlwind couple of days after that. I couldn't even tell you how many times blood was drawn, fevers were addressed, IVs were set or reset, and questions were asked. Questions, without answers. Lots of "We don't know yet", and "It could be this it, it could be that". Maybe viral. Parvovirus?  Nope. Fifth Disease? Nope. Mono? Nope. 

And on the list, it sat there, not crossed off yet. Leukemia. 

And so it was, on Thursday. A bone marrow biopsy was taken from his hip, under anesthesia. We had our first visit to a "consult room" soon after. It may as well be called the "bad news" room, a cramped and confined space for private conversations where most of the time they tell you things you don't want to hear. The bone marrow was really hard, packed with extra cells. It was getting harder for the doctors to hide what they already suspected. She wanted to be 99.99999% sure before she could say for sure. In our hearts, Amy and I knew that meant she was already 99% sure. 

​It was official a couple of hours later. 

There is a lot of support here. We've gotten plenty of advice, loads of resources, and lots of love to go around. We were encouraged to keep a journal, and I think this is going to be that, for me at least. It's only been a few days, but I am constantly amazed at how strong Landon has been so far. He's only 4 years old for heaven's sake, he shouldn't have to deal with this. We will all be brave together.​

                                     (Leave Comments by Clicking on Blog Title)