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. :-)
12/22/2019 11:41:30 pm
With every post, I keep searching for the “right” words. All I keep coming up with is we ache for you, we love you all, and though we aren’t next door you are always in our thoughts and we are by your side in spirit. Sending hugs, strength and love to you all, and extra healing energy to the little man. 💖
12/23/2019 07:25:24 am
My heart aches for you but you will get thru you have such love coming your way, an immense prayers . Make a list of all the things you will do together when you get past this. Steroids suck but it's part of his treatment your lovely boy will come back to you Hang in there All the people who love you guys will add to your faith. Kids are super heros !! K
12/23/2019 10:02:52 am
One of the worst parts of this situation is not seeing the smiles that Landon always had on his face. It breaks my heart! The good news is, this cycle will be over and I know once Landon gets home, he will eventually get back to his normal, healthy smiling self. Once he is back in his own house again, he will be so relieved and relaxed. Then the next cycle/chapter will come and you will all get through it again, and then again and again until your lives are back to normal. It's going to take a while, but with all the prayers and everyone's help, it IS going to happen! You and Amy are doing a great job in keeping things together and running smoothly. Keep up the good work, I'm proud of both of you and so proud of Landon for being such a strong little boy!
12/23/2019 11:49:14 am
Being 4 is tough enough trying to "understand" all that is going on. Being the parent and not having complete control over what is being done to your child - rips my heart. You really have to go along with what the doctors are telling you needs to be done. You can question it but ultimately you have to go along with their decisions. Frustrating ...
12/30/2019 11:41:57 pm
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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!