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.
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I'm Landon's daddy. I'm super amazed at how strong and brave he is, and you should be too!