Fast forward to March 22

So Jessie has been doing ok with her visits at Children's until now. She just had her 2nd bone marrow check last Friday. Afterwards she felt a little bit of a headache which she attributed to coming off of the anesthesia. She rested Saturday and was getting ready to go back to St Mary's College of Md the next day. She was home the previous week for spring break.
Sunday she started getting a headache again. By Monday morning it was so bad when she was packing the car to leave that she had to lie down on the couch and she wasn't moving. It hurt to move, light hurt, noise hurt. At 7am I gave her Tylenol and sent her back to bed. She rated the pain a7 out of 10. At 3:30 pm I went down to her bedroom to check on her. I prepared myself as I walked down the stairs not sure what I would find. She was ok still squinting with pain but now it's a 3. I emailed the oncologist at Children's to let him know what was going on. He said if headache wasn't better by Tuesday that she should come down to be seen at the clinic.
Tuesday am we were headed downtown and spent the whole day there. She was seen by the oncology clinic as well as the eye clinic due to the fact that she is taking ATRA (high dose Vit A) and that it can cause some side effects like false tumor findings, increased inter cranial pressure and clogging of eye veins.
Due to her previous genetic history of optic disc drusen (calcium deposits on the optic nerve) it made it difficult to determine whether or not there was more swelling there then before. The CNMC Opthemologist suggested we go back for a visit to the Opthemologist that diagnosed her originally. I called to make the appt on Wed and they referred me to a Neuro Opthemologist which graciously agreed to see her the next day at noon.
Dr Katz in Bethesda examined her and long story short decided she needs an MRI to see if there is a small blood clot in her head. That's the first step. If it shows nothing then he wants to do a lumbar puncture to measure inter cranial pressure and test her spinal fluid. Jessie hates lumbar punctures because it caused her to have a severe week-long headache while she was inpatient during the summer.
She is having the MRI done now. Will update later.

6pm update: MRI - totally normal. No infection, no bleeding, no swelling, no blockages. Yeah!! Now we see how she does over the weekend.
She may need a lumbar puncture to check for increased cranial pressure. We will see how it goes. Hopefully the headaches will disappear!!