Elliott's Brave Battle

Our little warrior is such a trooper. He spiked a fever Friday morning and the team added in more antibiotics, but he’s been fever free now for over 48 hours and all his labs/tests look good. He’s full of energy & in his words “I wanna go home with my family.” Dr Meeker is hopeful his counts are starting to rise and so we will continue to wait and see. Thanks for all the love and support!

Today, Elliott had a life saving procedure done, and he slept through it all thanks to some Benadryl. Here’s to his stem cell birthday! 🎉

This was St Luke’s first pediatric bone marrow transplant in 3 years, so it was a big deal for everyone. Dr Meeker said it would be boring, and honestly, that’s my favorite kind of procedure. Elliott was awake shortly after and acting totally normal. Hearing them say that this stem cell re-infusion is considered a “life saving procedure” made me realize how big of a deal this really is. I’m so grateful for medicine & I’m so grateful that our team worked it out with Salt Lake to be able to do all of this here close to home.

We finished all the bathing precautions last night and he was so happy to be able to wear a diaper and PJs again after being a “naked booty boy” since Monday afternoon. The child life team hooked him up with this dinosaur set for being such a trooper through it all. He’s tolerating everything really well so far and the team is really happy. Now we wait for his counts to continue to drop, and then to slowly recover.

Today we start Elliott’s high-dose chemotherapy with stem cell rescue. ❤️

He will receive two days of chemotherapy at doses high enough to completely wipe out his bone marrow and immune system. In four days, we will give back his own stem cells that were collected in June down in Salt Lake City. Those stem cells will then work to rebuild new bone marrow, but there will be a long stretch of waiting for his blood counts to bottom out and eventually recover.

During this time, he will be isolated to his hospital room for approximately 3–4 weeks with no visitors and will become dependent on blood and platelet transfusions while his body isn’t able to make those cells on its own.

Adults typically go through one round of this treatment, and some pediatric cases receive two. But because Elliott has medulloblastoma and is too young for radiation, his protocol calls for THREE rounds. He will hopefully get about a week at home between each round, depending on how quickly his body recovers.

The first four days will come with some especially intense precautions because one of the chemotherapy medications can cause serious skin burns if it comes into contact with his skin. This means showers every 6 hours—even throughout the night—no dressing over his central line, no diapers or tight clothing, and therefore a catheter.

We start this afternoon, and I’m nervous. There’s no way around that. This is going to be incredibly hard on his little body, and the next several weeks will be a long, difficult stretch for all of us.

But this boy has shown us time and time again that he can do hard things. He’s our fighter. He doesn’t give up. And we’ll be right there with him through every single step. ❤️

Please keep Elliott in your thoughts and prayers as we begin this next—and incredibly intense—chapter of his treatment.

We ended up reviewing Elliott’s MRI results today, and they are CLEAR!! There was NO sign of cancer progression, NO inter-cranial pressure or build up of fluid, and everything was NORMAL. There was also still no sign of cancer in his spinal fluid! This means his cancer is chemo responsive, treatment has been working so far, and we can proceed with the next stage of his treatment.

We saw the ophthalmologist this afternoon too and his optic nerves are no longer swollen and look better than they looked 4 weeks ago!! His vision hasn’t changed since last week and we don’t know what caused the swelling, so we will closely monitor them… but today was the good news we didn’t know was possible after all the anxiety of the last week. Clear scans and resolution of the nerve swelling. It’s everything we could have asked for.

AND through an incredibly generous donation today, we have officially hit our fundraising goal!!! To say we are grateful for each donation, prayer, meal, text, share, showing of love, etc is the understatement of the year. We have felt held up by our community in so many ways. This journey is hard, the weight of carrying this for our baby is heavy, but we are reminded again and again that we are not alone. Thank you. A million times over. 🙏🏼

PS: the icing on the cake was watching Elliott’s pure joy when he got to eat his favorite bar at feeding therapy today. And he ate the WHOLE THING. He knew today was a day for celebration.