It’s been about a month since the last update, and five weeks since Olivia began her new medication as part of her treatment plan.

Returning home from St. Jude brought a mix of emotions: excitement to be back in a familiar place, but also a sense of anxiety leaving behind the incredible care she had been receiving. The first couple of weeks were filled with ups and downs, with each day’s mood often reflecting how Olivia was feeling. Some days brought real joy — with less vomiting, more energy, and improved head control — while others were difficult, watching her continue to battle the symptoms of her condition.

As time at home went on, the good days began to outnumber the hard ones. Olivia not only experienced relief from many of her symptoms, but she also began hitting developmental milestones at an incredible pace. She started pulling herself to stand, walking with assistance or while pushing a stroller, and babbling more than ever — learning new words nearly every day. Her family even put together a list of more than 20 milestones and improvements to share with the St. Jude team at her first follow-up.

That follow-up took place on May 22nd and 23rd. Olivia underwent a full battery of tests — including eye exams, cardiac screening, blood work, and urine samples — to assess how her body is handling the medication. A brain MRI was not done during this visit, as those are typically scheduled 6–8 weeks into treatment. Given her clinical progress, there was so much hope and optimism heading into the visit.

Most of the test results were encouraging. However, there were a few unexpected findings in her bloodwork: Olivia was moderately anemic, and her creatine kinase (CK) levels were six times higher than normal. This was alarming at first, but her oncology team reassured the family that these side effects are not uncommon for children on this specific medication. They explained that if the drug is indeed working to shrink the tumor, these are considered manageable side effects — a tradeoff in the bigger picture of her treatment.

Leaving St. Jude after the visit brought mixed emotions: gratitude that many of her original symptoms were improving, but also concern about these new developments.

Back at home, Olivia has continued to do well overall. There have been a few days that caused worry — especially when she seemed overly tired or unsteady while standing, something she had been doing more confidently just weeks prior. Still, as more days pass, she seems to be regaining strength again. Her care team recently ran another round of labs, and the family is now awaiting those results. If her levels remain stable, her treatment can continue as planned. If not, a dose adjustment may be needed.

Her next appointment at St. Jude is scheduled for June 22nd, and this visit will include the long-awaited MRI to evaluate whether the tumor has responded to the targeted therapy.

Please join Olivia’s family in praying for clear signs of tumor reduction and continued healing — that this medication is doing exactly what it was designed to do.

“Let us hold unswervingly to the hope we profess, for He who promised is faithful.”
— Hebrews 10:23