Sorry for the delay, but we have been waiting like everyone else that has been praying and supporting us.

While Nickys scan does not show recurrence of ependymoma, we aren't sure how to feel right now.  We were told that from one angle that the radial changes looked improved and the T2 angle they actually looked a bit worse. The shunt is working properly and the ventricles have improved greatly, the spine edema shows slight improvement which was to expected with the shunt and can over time clear up. As for the main issue, these radial changes are concerning to our Jude Team - we discussed HBOT  ( hyper baric oxygen therapy ) treatments to reverse these changes - the problem with HBOT if these changes are any type of secondary issue - it could make things worse fast. If not it would automatically help the brains swelling.

So, the really confusing part is we have a non-symptomatic child for all the possible issues. While typing this my second team from Boston called to reassure me that they do not believe this cancer, but radial changes and that their board will be reviewing it on Wednesday as well. He didn't seem fond of the idea of a biopsy and said that they see these changes happen even this far out. Its amazing speaking to the worlds best and they differ in opinion. Nonetheless - I sure liked his answer best. He said sometimes these changes take time to heal and sometimes a steroid is beneficial and sometimes avastin ( that is an oral chemo - typically combined with HBOT) He said with him not having symptoms he wouldn't recommend anything at this point. Just to watch him closely.

So while the best doctors once again are watching our Nickybear closely - please pray for us all right now - the intial report from U of M was terrifying, but then we all need to remember that they have never seen Nickys brain and can't properly evaluate him likewise. So we are going to remain hopefully that this will still somehow, some way resolve itself without any surgical intervention.

I will update you once all our doctors have met with their teams and we have a solid path of action that shoulf be late Wednesday evening. I am not sure why this scan made me jump into panic mode and I sent out 5 Teams our MRI on Friday, but then again - I had a feeling they all needed to be following him on this scan and it allows them to communicate and agree on their choices moving forward.

To our family and friends,  I know you are texting and calling and showing us love and support - please keep the prayers coming and please have patience with us returning your messages and calls and texts until we post again... know that we love you and your messages mean so much to us when this type of stress is just part of this journey. Thank you for always being there for us...


Be with all our doctors across the country as they meet and go over our sons scans - let them come to a consensus for our little guy - let these radial changes heal and heal now! We have faith in you - please Lord watch over our son!


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