Chemo started yesterday as planned.   This means that Levi will get chemo for the next 7 days, followed by stem cell transplant on the 18th.   He was understandably not thrilled about going back to the hospital, but was happy to wear his new monster boots.   The highlight of his day was being able to use those boots to kick the soccer ball with some of his “doctors”, which is how he refers to anyone outside of his family that comes into his room.  Hoping for more monster boot soccer today![...]

Well...change of plans.  Levi’s treatment has been delayed two days because of insurance (don’t even get us started...).   But, it turned out to be great news as Levi and Owen had a very important zoom meeting this evening - with Santa!  Yes, even old St Nicolas is practicing social distancing this year and he made their day!   Levi, of course, asked his very favorite question of all “What’s your favorite color?” and asked for “Santa” for Christmas.   🤔. Owen was thrilled that Santa answered “red” because he could then tell Santa how all of their favorite colors are related since Blue plus Red equals purple!  He certainly had more specific gifts in mind for Christmas then his little brother.  And, seeing as he has been a fabulous big brother and kid in general, we’re pretty sure he’s on the Nice list.   Radar on the other hand, well, we wouldn’t be surprised either way.[...]

Levi has continued to make so many strides in his recovery.  We just love seeing his smile and hearing his laugh and thought you would too.   Another big milestone this week was that he took a drink of milk and had taken a few bites of food!   He has carefully selected from his favorites...chicken nuggets, donuts, and a pop tart!  Luckily he’s not on a weight loss plan...[...]

Levi is through with his testing this week.   His MRI showed that he has had a good response to treatment.  Remember that he not only had the brain tumor but it had spread to cover his brain and spinal cord - called leptomeningeal disease.  This is some of the hardest type of cancer to treat.   On his latest MRI, this has gotten much better.  The leptomeningeal disease is now gone from his brain (doesn’t it look so good?!) and decreased over the spine.   Woohoo!   Even though it isn’t gone, we are thrilled to see it has decreased.  This means Levi will now move on to the next stage of treatment.   However, as he is on a research protocol, we are still waiting to find out exactly what this next step looks like.  He will be getting more chemo - now called consolidation - followed by stem cell transplant.   The research study means that we are waiting to find out how many times he has to repeat this.  Either way, we are all just hoping it continues to crush the cancer, but that the side effects are manageable for our little, but Amazing Levi![...]

This little meatball is tired after all the testing! We are still waiting on the results of the MRI and a few other things, but his hearing and vision test went well.[...]

It’s been a great weekend at home, full of games, laughter, and snuggles.  Now, Levi has a big week ahead as he gets closer to the next steps of treatment.  As he has been doing so well and making so many improvements, it can be easy to overlook the side effects that can occur.  Since he is so young his brain is still in ultra development mode, which means his treatments can impact all of the things his brain controls including physical movements, hearing, vision, and learning ability.  This week he will undergo testing to see what impact it may have already have and help the doctors continue to find the balance between helping him and avoiding these effects - not always easy in the treatment of cancer!  He will start the week with neurocognitive testing tomorrow morning.  He’s such a smart cookie so we are hoping to get good results tomorrow!  He will then have full hearing and vision testing which means he will have to go under anesthesia again.  At the same time, he will have a full MRI of his brain and spine.  This is really important to tell us if the cancer has responded to the treatment he has gotten so far.  Then, finally he will have his feeding tube replaced.   [...]

Levi has been in a great mood and surprised us all last night when he decided to show off and sit up by himself for story time without any support.   What a strong (and super adorable!) little man!   [...]

Looking at this photo of Levi from one year ago compared to today – it’s amazing to think of how things have changed and what “Thankful” means to us now.  When Levi was born, he stole our hearts right away and we knew that there wasn’t anything we wouldn’t do for him.  Never did we imagine though, that there would be a day that we would feel like we couldn’t do anything…that even our everything might not be enough.   For us, that day came on June 14th.   But luckily, we did not have to do this alone.  Thanksgiving holds extra meaning to us this year as Levi is home, he has the same loving and sweet personality now despite everything he has had to endure.  We are thankful that somehow we managed to keep our heads above water.   We recognize that it is because we have been joined on this journey by so many others to help us, to encourage us, and to lift us up when we have needed it the most, that we are able to say today we are THANKFUL.[...]

To stay up with the times, Levi has happily started using his tablet for his own version of remote learning while at home.  Owen too has adjusted to school at home, although both boys prefer “recess” and have been getting in a lot of soccer, play fighting , and every other game Owen’s mind can make up (there are so many!).   [...]

One day home, the smiles are back and he's showing off his fancy footwork. 

Levi, Owen, and Radar make a great team! Score one for team Levi![...]