All the hard work in therapy is paying off -- he's crawling! We are so excited he is becoming more mobile. His arms, legs, and core are getting stronger every day. It's very hard for him, but he so anxious to do well that he keeps trying. Even when it hurts he tries. He's smart enough to let us know when he needs a short break but then heads right back to it. So proud of our Amazing Boy![...]

It's Week 5! He is tolerating his treatments well and for the most part, is in a great mood. He is laughing a lot and loves playing with his cars, building towers in order to knock them down, reading books, and popping bubbles. He sings songs when he pops them! There are still rough parts. His skin hurts from the radiation and he gets tired. Sometimes therapy doesn't go too well but even when he's cranky he works hard. All-in-all he is a super-star and every day he greets the receptionists and medical staff with lots of "how are you doing?" and "well, hi!"  [...]

Week 4 is underway!   Our Amazing Levi continues to do well.  Here he is all cozy in his favorite “warm blankets” right before waking up following another day of treatment.  He is too cute!!![...]

Levi is now halfway through his six week treatment - WOOHOO!!!

It is definitely not easy on him, but he has been doing great.  He still gets very tired after treatment and now his hair is starting to fall out again.  But thankfully, no nausea, no vomiting, and no pain!  He has been eating up a storm and enjoying rediscovering his old favorites like “Bananas?  I like bananas!”  It has been so much fun to see this, especially as it came right in time to enjoy his Birthday cake and other goodies[...]

We started week three of radiation today.  Levi is doing really well with his treatment and keeps us on our toes when he wakes up.  As soon as his eyes start to open after anesthesia (and sometimes even before!) he is requesting his clothes, mask, and to get in the stroller to go home.  He goes from totally asleep to ready to go in a matter of minutes.  And on our way out, he is sure to say “Thank you doctor!” to all of his team.  [...]

Woohoo, week 2 is done!  For the most part, Levi is doing really well.  He spends the morning in treatment which requires him to be under anesthesia.  Once he wakes up, he’s ready for some lunch.  He has been eating like a champ over the past two weeks! (although those chubby cheeks are a side effect of his steroids not his renewed love of Mac n cheese and Birthday cake).  He is pretty pooped after that and asks for long naps and an early bedtime.  He has a lot of other appointments in the afternoon to make sure we are helping him get stronger.    It is a lot of hard work for this little man!  But, as you can see, his sweet personality, big smiles and laughs are still shining through! 
He is home again for the weekend and enjoying having the family all together.  We hope all of you have a relaxed weekend as well![...]

Happy Birthday to our sweet, cuddly, funny, and Amazing Levi!   We can’t believe you’re already four years old!   You have been such a light and a joy for ALL of us since the day you were born and we are so excited to celebrate just how incredible you are today!   [...]

We hope everyone had a great Easter weekend!   The boys were certainly happy to see each other after Levi completed his first week of radiation.  Being able to come home on weekends is good for everyone!  Levi was tired but certainly found energy to help with the Easter Egg hunt, build and knock down towers, and generally be cute in every way possible.  Despite treatment, he has been able to eat more and more and we are so excited to see him enjoying Doritos and Goldfish...and even some Easter ham![...]

Levi is now through 3 days of his radiation treatment and doing great!  They have a very smooth system for him where he gets to come in and play with blocks and trucks before his treatment starts so he doesn’t mind coming in every day.  You can see above some of his favorites.  After a little bit of playtime, then it is off to sleep (anesthesia) while he gets treatment and he wakes up again by afternoon.  The treatment is pretty intense and with it comes a LOT of fatigue but he still has been in pretty good spirits even if bedtime comes much earlier than before.  We are so proud of this little guy and even though there’s a lot of treatment to go...we have a team of people ready to go for snuggles before bed to help him through.  [...]

Levi arrived early to Mayo to start on his new treatment protocol. He was a sleepy boy as they did some testing (hence, the fancy cap) to get a baseline and to monitor his progress. Everything went well and he's done for the day. A good first treatment day![...]