Sebas Update

Last week, our family flew back to Stanford Children's Hospital in CA for Sebas’ next round of cancer scans and follow up appointments. We got the results and, unfortunately, they are not what we had hoped. There is a new nodule that has surfaced in his lung. At this time, it is too small to surgically remove so our only option is to closely monitor it and see what it does. They re-reviewed his last scan from October and they did locate this nodule but it was very small. They don’t know what it is but the concerning thing is that it appears to have grown since then.

To speak truthfully, we are very scared and heartbroken. But we are trying to focus as much as we can on the positive, which is that the 3 lung nodules that they have been monitoring were stable and have not grown in 9 months.

While at Stanford, Sebas also had a follow-up hearing test. One of the chemotherapy drugs that he received over his ten rounds of chemo is well known for its ototoxicity that can lead to hearing loss. This is something we have had to closely monitor over the past two years and will need to continue to monitor as he grows older. When tested at the higher frequencies there does seem to be some hearing loss. However, we are grateful to share that his hearing function in the most commonly tested frequencies was normal and he does not need additional support at this time.

Also, the MRI of his hand did not show any signs of cancer. Our focus and prayers are that this new nodule will not continue to grow and will ultimately prove to be something else entirely. 

We are also grateful that Sebas had a very smooth experience with his scans, anesthesia, and appointments. The days leading up to a scan can be pretty tense for him but this time he seemed more at ease. And unlike last time, he didn't need to be admitted, which we are also so thankful for.

We consider this community so integral to our journey and so we wanted to share this news with you as soon as we could. We are not yet sure when Sebas’ next round of scans will be, but we will keep you all posted. As we wait for his next scan we are focusing our efforts and energy on the research work we are spearheading.

For those of you reading this and who follow our journey, we want to thank you for all the ways you have held and supported our family during these difficult moments.  Please continue to keep him, and all of us, in your thoughts and prayers and we ask that you hold our baby in light.