No notification my son's case was accepted?

Hello,

I have lots of questions.

Backstory: My 14yo son was being seen at Rush University in Chicago where we live (Chicagoland area) for benign soft tissue tumors in the knee area, of vascular malformation origin. Those caused him horrible pain starting at the age of 7 and it took a while to get an accurate diagnosis which was around the end of 2020, for the longest time I was told he had hip inflammation, or possibly juvenile arthritis

He was quickly sent to Rush for treatment, to quickly rule out cancer, thanks god it was benign. He saw 2 doctors over the past 5 years, an orthopedic/oncologist surgeon and a interventional radiologist. One tumor was removed surgically (ortho surgeon) in December 2020, it was in the thigh area so "easy" to get. The other was treated through intervention radiology in December 2022 (he had relief for a year until that other one started to act up) but hasn't been removed because it is in the intra muscular/knee area. But no more pain no more need to stack ibuprofen so he could walk (the morning waking up usually would be when pain came) we thought we were done. Condition been stable according to latest MRI in April this year.

Unfortunately, despite what we thought, the tumor wasn't done with him. As he is growing in height like weeds, the remaining tumor is moving with his legs growing and since his previous procedure 2 and a half years ago he has lost range of movement, about 20 degrees and Rush doesn't recommend anything else because it could make things worse. Basically "wait and see" because doing anything could make it worse due to location... great

So because i am a mom who would do anything for her son, i reached out to Mayo Rochester at the end of may.

I just learned he was accepted. But it's been almost a month since i had the original intake call and never got any news back since then, i went the day after the call to get the MRI images sent out. I had to call to follow up and just today because i called my son was placed on the 6-9months waitlist (which is fine for us we aren't in a hurry and we ve been dealiny with that for years already). Is that normal or did i mess up somewhere? Why did i have to call for him to be placed on waitlist while he had been approved it's not automatic? My understanding is that he was accepted at the vascular malformation center, which makes sense because this is the root of the soft tissue tumors (veinous malformation not vascular which was rooted out by radiologist interventionist at Rush through an angiogram), how was that decided vs say orthopedics? During intake I wasn't sure where I thought he should be seen, that's not for me to decide.

Also long shot: he was accepted, does that mean they are confident from his record they got that they can help him where Rush couldn't/wouldn't anymore?? Sure they aren't wasting their or our time having the same info his previous care team has if it meant they stand with their original opinion?

I am going to get a call in 6-9 months to be scheduled right? How can I know if I have a patient portal yet?