06/27/2025
We got an update from Rykers aunt....
Yesterday
by Jessica Jackson , Organizer
Aplastic Anemia is SOO complicated! Everyday its something new! And because its so rare, her medical team is sometimes stumped as well! They are doing there best to keep her comfortable and keeping the bad stuff away until her transplant!
With these constant hospital stays they are looking at finding a temporary housing option closer to the hospital. After last week, a scary drive in an ambulance, being TWO HOURS away is NOT ideal!
Ryker's parents work for some amazing people and have been very understanding with all the work they are missing! Your support and generosity are so much appreciated and continue to help this family!
Ryker is such a trooper and is mostly happy, loving all attention and stuff for her to occupy her time! They make sure she is always busy when she is feeling good!
T-Minus 35 days to transplant!!!!
"Note from Mom"
Ryker has periodically complained of headaches and blurry vision since her diagnosis of Aplastic Anemia back on 5/15/25. We thought they were from her platelets and red blood cells getting low. She had various vision tests/images done on Friday (5/20/25) along with an MRI and a lumbar puncture. Everything was coming back normal. We followed up with neuro ophthalmology yesterday and found our Ryker has Grade 4 (out of 5) swelling of her optic nerves, that is caused by something called IIH (Idiopathic Intercranial Hypertension). The increased pressure in her brain is putting pressure on the two main nerves that run along the sides of her head inside of her skull and goes into her eyes. Her optic nerves being swollen have caused her natural blind spot (which we all have) to be about double in size.
Right now this is treatable with medication to reduce fluid, but the longer the pressure is increased, the more of a chance that she can have permanent vision damage. They are not sure why this is happening and if it is related to the AA (I think it is) but either way we are getting it under control.
We have also gotten to knock some of her pre-transplant tests out of the way since we have been here so that's awesome! Getting closer and closer to transplant.
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