Like most kids his age, Landon loves his blankie. But, his blankie had seen better days.
At some point in September or October, Landon received a package in the mail. He was surprised and happy to find a super comfy blue blanket, just his size...small enough to carry around but big enough to cover him when he was sleeping. It was also made of the blankie stuff he loves...wooly on one side, and soft and fleecy on the other. He brings his blankie everywhere, a well-worn bastion of solace and safety. Recently though, it developed a rip along the seams, not surprising because the blankie is always with him. He asked us to replace it with the same one...he was pretty disappointed when I told him it wasn't something we could just buy because it wasn't sold in stores. But that doesn't mean we couldn't try to track one down. 🤔
After a little searching, some communication, and kind people, something came in the mail again today...the same exact blankie that Landon received the first time! Yay! We are all so thankful for the people and organizations that work so hard to bring smiles to our faces, especially when they are sometimes harder to come by. 😊
The blanket was the result of a collaboration between The Leukemia & Lymphoma Society and Subaru Loves To Care. Together, they distribute thousands of blankets and arts and crafts kits yearly to patients around the country. I decided to take a shot in the dark and look for a contact that might be able to help. Pretty quickly I found Courtney Rinaldi, the Patient & Community Outreach Manager with the Leukemia & Lymphoma Society. I sent her an email and a picture of Landon with his blanket. She was happy to help and immediately started the search. She was able to track down the exact same blanket in just a few days, which was a challenge given that there is more than one blanket design. The day after she let us know that it was being mailed to us, we received it...the exact same blanket that Landon adores. We really appreciate the love and kindness sent our way. Kids like Landon need people like her and organizations like the Leukemia & Lymphoma Society and Subaru Loves To Care to make their world a better place.
Most Fridays are "Clinic Days", when Landon is expected to be at the Jimmy Fund Clinic at Dana Farber. Many of those days start as soon as the JFC opens at 8:45 am. We live about 75 minutes south of Boston...without traffic. As you may have heard, Boston:traffic as peas:carrots. On the days we have to be there super early, we often take advantage of the Boston House.
Not far from the clinic, the Boston House is a place to stay for anybody from anywhere that is receiving care at Dana Farber Boston Children's Cancer and Blood Disorders facilities. It is a non-profit, operating from donations from the public. Patients are welcome to stay as long as they are receiving treatment at Dana Farber. Families can donate but it is not required.
To Landon, it's a really big house with lots of rooms where we sleep overnight sometimes to avoid the traffic, and that nice people have put food in the kitchen for us to eat. He loves the playroom, but we honestly haven't been there long enough for Landon to fully enjoy the basement playroom yet.
To us, it's an amazing, comfortable, quiet, and well-kept place funded by good-hearted, loving people. It's a nice convenience to avoid traffic and make our lives a little easier. However, we are the exception I believe...many families that stay there are from out of state or even out of country. They are afforded a place to comfortably stay, stocked with food and books and games and parking and love, within walking distance to Dana Farber to receive the best care in the world. Every time we walk in the front door, it warms my heart that places like this exist for people that need it more than most.
Back again, but with more smiles this time. 😊😄😊😄
Landon is back at BCH again, but don't worry! This time it's a scheduled visit, just part of his treatment. He is taking medicine for a few days that needs to monitored by doctors, and that can't be done at home.
This time around, we know what to expect and are better prepared. There have been more visits to the play room, lots of excited talk about family, friends, toys and summer, as well as a much more positive vibe in the air. He may have less hair this time around, but Landon's attitude is "No hair, don't care!"
Being at home again this month took a little adjustment, but we seem to be back in the swing of things there as well. Slowly and surely, and when blood counts allow, we've had some fun with visitors and even ventured out of the house, too. We are looking forward to spring, when treatment backs off a bit and warmer weather moves in!
Daddy did see the elf Buddy when he was home a couple of weeks ago!
Before Landon could even get in the house, Buddy was waiting with a surprise for Landon. He wanted to make sure Landon had a great homecoming, sending him around the house with a map to the rest of his gifts. He also made sure our hands were clean, too!
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.