Skylar's Medical Journey

This page has been started as a way to share with friends and family about a new and frightening medical odyssey Skylar and our family is going through. It is so detailed and so all-consuming for us that we can't possibly tell everyone individually. We will continue to send updates through this page and appreciate everyone's love and prayers as we move through all of this. Right now, we are not sharing publicly, thank you.

In early January, Skylar noticed her left ankle was puffy and swollen. She did not complain of any pain and hadn't noticed it before then. We thought maybe it was sprained or injured even though she didn't have pain. We took her to urgent care where they took X-rays and noticed nothing of significance. They confirmed it wasn't broken and thought it was most likely a ganglion cyst. They offered to order an ultrasound and we agreed. Ten days later, we had that done. The next day the results suggested cancer, unofficially. We were shocked, scared, panicked, and were referred to pediatric oncology at U of M, Mott Children's Hospital, in Ann Arbor for further investigation of the mass. Before that appointment came around, we saw Skylar's pediatrician. She ordered blood work and an MRI of Skylar's ankle in the meantime. Both came back normal. If it was cancer, we hoped everything was caught early and were planning on waiting for our appointment at U of M for next steps. If it wasn't cancer, we were hopeful the mass could just be a ganglion cyst after all.

On January 31, 2023, we had the oncology appointment. At this time cancer was not diagnosed yet. After looking at it visually, understanding that the bloodwork and MRI were normal, they felt this mass was a vascular malformation, not cancer, and did not feel a biopsy could be done in clinic because vascular malformations have a high bleeding risk. They referred us to a vascular malformation surgeon and scheduled a surgery date to be performed April 6th. So, from January 31st to April 6th, we thought we were dealing with just a non-life threatening vascular malformation.

During this time, Skylar continued with school. We went on spring break to Tennessee where we had a great time and tried to carry on with normal daily life. On April 6th, Skylar was prepped for surgery to treat the vascular malformation. This was supposed to be about a 2.5 hour surgery, however, we were called back to speak with the surgeon after an hour. He indicated when he went to inject dye into the mass to perform the treatment, rather than it disseminating throughout the vasculature, it pooled in one spot inside the mass. This was concerning, so he performed a biopsy and chose not to perform the vascular treatment.

Four days after the surgery, we received the biopsy report through Skylar's health portal. It indicated the biopsy was strongly positive for CD99 which is most consistent with Ewing sarcoma. So far, what we know, is that this is considered a small round blue cell rare cancer. A soft-tissue cancer.

On April 13th, our whirlwind of testing started. These were done to help determine a treatment plan. Skylar had an echocardiogram which will be used as a baseline test prior to treatment. Periodically, she will have this test again to measure the strength of her heart against the treatment. She also had a chest CT and a Tumor PET/CT scan. We quickly received the echo and chest CT reads. The CT showed two small nodules in the right lung, middle lobe. We do not know at this time if these are concerning, as they did not show up in the PET/CT scan. We pray they are a non-issue. The PET/CT findings indicated a "soft tissue mass with intense tracer accumulation consistent with neoplasm" at the left ankle.

On April 14th, Skylar was seen by the orthopedic oncology surgeon at the Rogel Cancer Center of U of M in Ann Arbor. He would be involved if surgery is needed. This doctor sat down with us and explained that we are waiting on the results of an additional biopsy that was done along with the original biopsy. This one would determine if leukemia is present. This is the first time a doctor sat down with us and explained everything all one big nutshell. It was a lot to take in. We are still processing.

As of today, we know Skylar has two surgeries scheduled for Monday - bone marrow biopsy and a port placement. Tuesday, we will meet with oncology to assess all the tests and determine the exact treatment plan moving forward. We know this is not a one and done situation. We are looking at possibly months to years of treatment and, at this time, truly don't know what it all entails. We should know everything on Tuesday.

We are trying to stay calm but emotions are running high. We want to stay organized and have started a binder with tests, appointments, results, and discs. It is filling up fast. Skylar is currently in no pain and, of course, is very nervous. She's taking it in stride as best she can, all things considered. We are all just staying positive and taking it day by day.

We will be traveling to U of M several times per week and are already doing overnights in a hotel near the hospital, weekly. If you would like to donate, it would be so appreciated. We have a long road ahead and anticipate a lot of hospitalizations and overnights in Ann Arbor.

Thank you all.