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Below is Eloise's journey, summarized as of 2/4/2022: On October 20th, Eloise had an MRI and was diagnosed with a brain tumor. She was admitted that day to American Family Children's Hospital (AFCH) in Madison, WI and underwent surgery to remove the mass the following day. Surgery lasted in excess of 8 hours, resulting in the successful removal of the entire tumor - a gross total resection. We will always be grateful to neurosurgeon Dr James Stadler and team for their hard, patient work in the OR that day. Eloise spent a total of 6 nights in the PICU before being transferred to general pediatric care also at AFCH.
Pathology revealed the tumor to be a medulloblastoma - a brain cancer located near the brain stem. Further molecular analysis revealed the tumor to be a type known as WNT. Eloise's neurooncologist Dr Diane Puccetti determined that Eloise would be a good candidate to participate in an experimental study at St Jude's Children's Research Hospital under the renown medulloblastoma specialist, Dr Amar Gajjar. We are grateful to Dr Puccetti for facilitating Eloise's transfer of care.
Eloise was released from AFCH on Thursday November 4th (exactly 2 weeks post surgery) and was able to spend the weekend at home with family until leaving Sunday 11/7 on a flight to Memphis along with Jenn and Dave.
The first week at St Jude was the proverbial "drinking from the firehose" with wall-to-wall meetings, scans and general work-ups to begin participation in the SJMB12 study. With the considerable logistical feat of onboarding complete, Dr Gajjar established Eloise in the WNT Strata 1 treatment protocol - A relatively favorable treatment path consisting of 30 proton radiation treatments to be administered over the course of about 7-8 weeks, and followed by 4 months of chemotherapy. The SJMB12 study will consist of less radiation and chemo than what is considered to be the standard medulloblastoma treatment protocol - hence the experimental nature of the study. Since the inception of this experimental study in 2012, Dr Gajjar has experienced excellent treatment results with children in the W-1 stratum which marks Eloise's path.
Eloise received her first radiation treatment on 11/17 and continued to work with Physical, Occupational and Speech Therapists at St Jude, as well as attending St Jude school for several hours a week. Dave returned to Madison on 11/13 to be with Eloise's sister, Vivienne, and to begin working again. Jenn remained at St Jude supervising Eloise's care.
Radiation treatments were completed on Dec 30th, 2021. Eloise and Jenn were able to come home to Madison for a short reprieve. Jenn, Eloise and Jordynn (Eloise's cousin) will be driving to St Jude, leaving Saturday Feb 5th. Eloise will begin chemotherapy treatments the week of 2/7. The treatments will be in 4 monthly cycles, so they should be coming back from St Jude in mid-June. After chemo, Eloise will continue to have return visits to St Jude at regular intervals for MRI scans to monitor treatment efficacy.
Wrapping up our brief visit to St Jude, 1 year to the day of Eloise’s last chemo treatment.
The consensus is that she is doing amazing. Scans are clear, OT and PT are impressed, she even got a hug from her historically stoic and serious neurologist who told her “you’ve made me so happy today”. Another team member called this trip her victory lap.
She continues to get stronger, improving balance and coordination. She’s finishing out middle school on the honor roll and looking forward to a summer of adventures including a trip to Montana to attend a camp for teens who have had (or have) brain tumors.
Her road is not done, but the way forward is brighter than it looked a year ago. Thanks again for holding us up through it all. ❤️ Jenn
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