🦄💜 Seattle Update 💜🦄
Our initial appointment on Tuesday went about as good as we could’ve hoped. From the doctor: “Jana can and will able to do anything that she wants throughout her life!” 😭❤️💪🙏
The doctor is over 95% positive Jana has Progressive Central Nervous System Vasculitis- which puts her in the rarest of the rare. In the Pacific Northwest they only see about 1-2 cases every 18 months (with other states even sending their cases out). With Progressive CNS Vasculitis, there really isn’t a cause, it’s basically your own body causing the inflammation in the blood vessels and once in awhile it does concentrate on a certain area (brain for Jana).
Treatment wise, there’s a protocol to follow BUT everyone is different so it’s a treat and react type treatment plan. As such, with the new treatment plan, she will be having MRI scans every 3 months and they’ll adjust treatment accordingly. The first move is to get her off the steroids as the side effects are now extremely outweighing the benefits. Secondly, she will be starting MMF (Mycophenolate Mofetil) oral treatments in the next month to suppress her immune system and keep the vasculitis at a minimum.
Jana is a candidate down the road for Revascularization Surgery, but there was no mention of an immediate need.
The doctor reassured us that, to date, Jana has received world class care from all the doctors at Marshfield Clinic and was very impressed during her review of Jana’s case. This doctor will be monitoring Jana’s case the rest of the way. In her words, “It’s my job to get you to 100 yrs. old, someone else can take it from there”.
Mom and Dad are breathing a lot easier and were nearly in tears walking out of the hospital. We are in Seattle through Saturday as they may want to run one additional test that we need to head back in for, but for us this is amazing news! 💜🦄
🙏🙏🙏 WE CANNOT THANK EVERYONE ENOUGH FOR THE LOVE AND SUPPORT 🙏🙏🙏
#JanaStrong #SeattleChildrensHospital #BetterWhenImDancing #pediatricstrokewarrior #pediatricstrokesurvivor #thankful #Family
