POST TREATMENT: DAY 2

Wow wow wow! It’s been quite a day. I don’t even know where to begin! But I guess my mind wanders back to the very first phone conversation James had with our doctor at St. Jude. He laid out the entire treatment plan… radiation, chemo, and maintenance chemo. It all seemed so daunting! So overwhelming! And the end seemed so far away! All during treatment we thought briefly about the end, but mostly we tried to stay focused on each cycle and each day in order to keep our sanity. But, step by step we have reached the end and I want to shout from the rooftops that Caleb is still NO EVIDENCE OF DISEASE!!!! Today was his official post treatment MRI and Lumbar Puncture and everything was clear!!! And the icing on the cake is Caleb finally got to have his “No More Chemo” party!!!

But here is a little more about how the day unfolded… we were up EARLY! Caleb had to have a clearance visit to make sure he was good to go for his MRI and that appointment was at 6:30am. We then played for a while in the playroom. Caleb is so good on scan mornings because he knows he can’t eat. And for anyone who knows Caleb, he has a snack in his hand every 5 seconds. But on these days he just knows he can’t and he really doesn’t even ask. We just played and tried to keep busy until they called him back for his appointment.

I went back into the MRI induction room with him, while daddy went off to do a little work. Caleb was very calm and just watched his iPad until it was time to go to sleep. I think he may have been a little nervous this time, as he got pretty quiet as the time came closer and more doctors and nurses came in the room. But I promised him I would tell him when it was “sleepy time.” So when they were ready I gave him a huge hug and talked to him about all the snacks I would bring him in the recovery room until he was completely asleep.

Waiting for the phone call that he is in recovery is always a little nerve racking. I know they take amazing care of him when he’s under anesthesia, but my heart doesn’t rest easy until I get that phone call that he did great and is in the recovery room. Today that wait was about 2.5 hours. The MRI they do is very detailed, and then immediately following that they do the lumbar puncture while he’s still asleep. So all in all it’s a long time under anesthesia.

As usual Caleb woke up in the recovery room HUNGRY! He first asked for chocolate chip cookies and orange juice. This was followed by white cheddar popcorn, candy, and oranges. The nurses just love him and say he wakes up so sweet compared to some patients they see. I guess anesthesia makes some people angry. But not Caleb, he’s sweet as long as you have snacks HA HA!

We walked back to Tri-Delta to rest for about an hour before we had to go to our Clinic appointment. Our Clinic appointment is when we knew we would be getting the results. The hour before we walked back over to St. Jude was when I started getting really nervous. Even though you tell yourself everything is going to be ok, your mind wanders into all sorts of crazy scenarios. But Caleb helps keep us calm by making us laugh and just being himself. He has no idea the gravity of things sometimes, so he just carries on like normal. It really is a blessing because I don’t want him to have to worry.

They called Caleb’s name, and it was time for our appointment. I swear my legs went numb walking back to the room. Our nurse practitioner came in and told us everything was clear! His MRI and his CSF (cerebrospinal fluid)!!!!! We all cheered! So, that meant one thing… time for his NO MORE CHEMO PARTY! For St. Jude kids this is a huge milestone. All during treatment families dream about this day and our day was FINALLY here! Our group of doctors and nurses that have worked so hard for the past year and a half to keep Caleb healthy all came in to sing him the No More Chemo Song. It felt totally surreal that it was finally happening. All the details of the treatment plan laid out in that first phone call… every round of radiation, chemo, and maintenance chemo is complete! Here are some pics and video of the moment… at the end you’ll notice Caleb throwing confetti at his doctors. Caleb sometimes gets nervous with large groups of people, so I thought it would be fun for him to bring his own confetti to throw at the doctors too. He was so excited to do this! I think the doctors were surprised too and Caleb thought it was hilarious! We even threw confetti at each other tonight in our hotel room ha ha!

This is our AMAZING team of our doctor and nurses that have helped us along the way! We owe everything to them, and as they were congratulating us we were congratulating them. This milestone is due to their hard work and dedication to a cancer that doesn’t often see celebrations like this. It was a memorable moment for everyone!

And here is the video of the whole celebration!!!!

After the group celebration, our doctor took us into a consult room to show us the scans of his brain and spine. We had a lengthy conversation with him about what treatment will look like going forward, what we can expect, and any typical issues Caleb might face because of the treatment.  We will be coming up every 12 weeks for a while so St. Jude will be monitoring all of this very closely. We also talked about port removal and when that would happen. Ultimately that will be up to us and will depend on when Caleb can handle a regular IV instead of having a port. Right now the port makes things easy, but also puts him at risk for infection. There are extra precautions we have to take with Caleb when he has his port. So on our next trip up we may try a peripheral IV and see how he does.

The last thing we discussed with his doctor was this huge milestone. His words really meant a lot, as he congratulated our family on making it through the last 18 months. He said he can’t imagine all the things that we have been through. He spoke about the statistics of AT/RT and told us Caleb was one of his patients that he felt had the most promising outcome. From the location of the tumor to his age at diagnosis, he has had everything going for him. He said only a handful of his patients come to him with such good odds. The future is not guaranteed, and there is still a 20% chance of relapse within the next 2 years, but if anyone has a chance of beating this it’s Caleb! Our doctor’s sincere words meant more than he will ever know. We have always liked and respected our doctor for his honestly. He has never made false promises and always gives it to us straight. To see him so excited for us, and so proud of Caleb meant so much.

Here is a look at his current scans compared to his scans at diagnosis way back in August 2018!

To celebrate this amazing day we let Caleb pick ANYTHING he wanted for dinner. He asked for breakfast for dinner, so we decided to go to IHOP. When we walked in we couldn’t believe that they have new cereal pancakes… literally 2 of Caleb’s favorite things put together into one meal. So he had a pancake topped with Captain Crunch and frosting, along with bacon, sausage, and scrambled eggs. He was in breakfast heaven! As we went to leave and asked for our check, our server told us that a man over there had paid for our meal. We said what man? And he pointed to a booth on the other row. Caleb walked over to him and said Thank You! He said it was his pleasure and we told him that we were celebrating Caleb’s End of Chemo! I am so grateful there are kind humans left in the world. This really made our night. He didn’t even know how special today was and then it was topped off by an act of kindness. My heart is full in so many ways!

So, wow, there it is! A day we have dreamed about for so long. I will never take for granted that we reached the end of treatment. We know so many others who do not get to experience what we did today, and who never get to celebrate the end of treatment. We continue to fundraise and give back to St. Jude all we can so their research can make sure that more kids are able to reach this milestone like Caleb did today. And I will never stop thanking God for each day with Caleb. From the very beginning He has been guiding us to make all the right decisions for Caleb. He led us here. He has orchestrated us meeting people who are meant to be in our lives, and who have changed our lives, that we would have never met in any other way. Mostly I am grateful for this perspective on life that I wouldn’t have any other way. Each day is a gift. We don’t know what the future holds but we can celebrate today and each little victory along the way and make the most of every second we have with one another.

We can’t wait to get home to Tyler tomorrow because we miss him so much! Caleb did call him tonight to give him the good news, and he picked a special toy out for him to bring back. I can’t wait to celebrate together tomorrow as a family!