Sleeping in our beds tonight, the first part of the journey is over.
It's been a busy few days for the Guile family. Christmas was a little more complicated this year. That's okay though, we made the best of it!
Landon's cousins and our family friend Jose came to visit on Christmas Eve, bringing some joy and some presents. It was nice to see everybody moving around...we spend a lot of time just sitting around up here. Then Landon was up bright and early Christmas morning to see what gifts he received from Santa. He's been so brave and strong that everything that was on his Christmas list was under the tree! I think there might be even more waiting for him at home...daddy swears he saw our elf Buddy run down the hallway the other night, and it looked like he was carrying a MAP. I think there might be some fun in store for him when he gets home. Grammy came up to visit on Christmas as well, bringing some yummy food for Christmas dinner.
Landon's brother, Luke, had a fun Christmas too. He hasn't been able to come to the hospital because he's been sick with bronchiolitis, so he couldn't stay with us on Christmas Eve. He spent Christmas with his cousins and Grammy instead. He keeps asking for Landon to come home, looks like he can't wait to see his brother!
Now a bit of pretty good, really great, Christmas wish news...we are going home early!!
Landon has been progressing incredibly well. One of the best indicators of initial recovery is called ANC (Absolute Neutrophil Count). Neutrophils are the white blood cells that fight germs, and without them our bodies cannot fight off even the common cold. The doctors like to see at least 500 for an ANC. Landon was at 0 when he got here. Today...490! As a result of this, our predicted discharge date of January 6th has been moved to Monday, December 30th - one week earlier than we expected. There are still two procedures he has to undergo before we leave (lumbar puncture today, placement of port on Monday), but the appointments are set and home is on the horizon!
Our lead doctor attributed Landon's speedy progress to how Amy and I handled everything that was thrown at us this month. But it wasn't just us...Amy told him that we handled it so well due to the loads of love and support around us. This couldn't be more true. We could concentrate on providing for Landon because the other aspects of our lives were lifted off of our shoulders. Work responsibilities, keeping our "house" in order, making sure Luke was cared for when we couldn't be there, day care, Christmas stuff, the constant stream of cards and gifts from friends, family and strangers; the list could go on and on. It wasn't just us who helped make this happen. So...
...Happy Holidays, and thank you all for making it so much better for us, we couldn't have done it without you.
Landon and Luke attend day care at the Kids Ink Day Care facilities in Dartmouth. From the beginning of all of this, everybody there has been incredibly supportive. From owners to staff to kids, they have been sending their love and can't wait to see him again. They've sent some fun things for Landon to do, gave us a Christmas tree for our room so Santa can leave presents under it, and arranged for his schoolwork to be picked up weekly so he can keep up with it here. They have offered outside babysitting and we have already started talking about Landon's eventual return to the Blue Room. Ms. Jenn, Ms. Courtney and Ms. Angela are all about making sure Landon has a great transition back when he's ready. We are grateful to have such an amazing group of friends and teachers at Kids Ink and he can't wait to see them all again. He misses all of you and thanks you for everything!
...or just big softies?? Off the ice, just big teddy bears really.
Patrice Bergeron, Chris Wagner, and Anders Bjork stopped by today! They were super nice, dressed for the holidays, and ragged on each other, all while vying for smiles from Landon...who honestly just wanted to build his new Mousetrap game already! 🤷 We all had the same experience of never actually playing Mousetrap growing up...either nobody's parents wanted to put it together for them or we could never play because pieces were always missing, haha. Landon got his Bergeron jersey signed, too!
When you're stuck in your room and under restrictions because of a weakened immune system, it can be harder to keep your spirits up. But when a good friend shows up, that can all change quick! It was a nice Sunday afternoon for Landon and Noah.
Good news as well...most of those restrictions have been dropped as of today, until further notice. Landon can venture out of the room later and check out the playroom, yay!
Friday was a tough day that included fasting, anesthesia, and a procedure. Our little man wanted to eat all morning but wasn't allowed, then his tummy didn't really want him to eat in the afternoon. This was especially frustrating for Landon because Mema and Uncle Sean were up to visit, and brought up his favorite home-cooked food from the NY family...spaghetti and meatballs.
Then he woke up this morning.
L - "I'm hungry. I can't wait for more of Mema's meatballs".
Me - "I'll ask her to make more for you so you can eat them up in a day or two. Would you like eggs and bacon for breakfast?"
L - "No. I can't wait for those meatballs."
Me - "Spaghetti and meatballs aren't breakfast food silly! You want some for breakfast? "
L - "<shakes head happily in approval>"
He hasn't stopped eating since and has resorted to food service spaghetti and meatballs once we ran out (sacrilege!). So get on it, Mema! We need some homemade Italian meatballs up in here, we are fresh out! 🍝🍝🍝 Please and thank you, of course.
Landon wasn't feeling so well yesterday morning, until the clowns came to town. :-) It took a little work (and plenty of passing gas jokes, whatever works ¯\_(ツ)_/¯ ), but they got a few smiles and even a giggle or two. The Laughter League at Boston Children's do great things. And maybe they can teach daddy how to juggle better. 🤔
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Landon got a message today right before bed from one of his best buddies, and I'm sure it got the biggest smile of the day, just what he needed to end the day.
Noah asked his mommy how to spell Landon's name, and when mommy checked out why, she found his name spelled out on his bedroom door. :-) Best buds! Thanks, Noah!
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I was sitting here trying to figure out how to start the first entry when Nurse Lindsay came in to administer one of the countless meds Landon has to take. He made a face that suggested he would much rather just spit it back out, but he took it like champ.
"You are a different breed of 4-year old, that's for sure", said Nurse Lindsay. Most kids his age, she said, put up a huge fuss or refuse it outright.
She just steered the ship for me. Is there no end to the amazing work the nurses and doctors here can do?
And that's the thing about all of this. Yep, he has leukemia. But we can make that seem secondary, make it temporary. Landon has been doing it since he's been here. We told him what's going on and that his bravery will help him through it, even when what's about to happen will be scary or hurt. We let him know what's coming, and he just deals. He just deals. I can't even stand it. This feels like the worst thing to ever happen ever and he deals with it.
It's like a perpetual sunshower. The dark clouds are always around if you look for them...sometimes they'll find you, in that unavoidable way that impending inclement weather will do. The sun is always shining somewhere too, and it keeps finding him. He knows that it's around because we all keep showing it to him. And we intend to keep it that way.
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