TIFFANI'S JOURNEY

My niece, Tiffani has been residing at the Dr. Everett Chalmers Hospital in Fredericton since April 15th with her mom at her side. A comment made by the medical staff “you’re here for the long haul!”. There is still no diagnosis, but recent bloodwork shows evidence of a gene JAK2 Positive which plays a vital role for controlling blood cell production from stem cells in the bone marrow (common symptoms are head pain/pressure and blood clotting). She has been scheduled for a bone marrow biopsy in St. John next Tuesday May 6. It’s been discussed to request a referral to the Stollery in Alberta and the neurologist also mentioned a referral to Halifax or Montreal. If the marrow biopsy determines the JAK2 mutation, medical staff can then provide the necessary medication to treat the illness. Here’s a recap of Tiffani’s journey:

• 2021, During the early stages of her pregnancy she had frequent visits to the hospital for dizziness and headaches

• 2021, December 7th her son Hudson was still born at 26 weeks (medical reports confirmed 65% of the placenta was blood clots), dizziness continued, and headaches turned into migraines, medical professionals confirmed blood thinners only needed if planned future pregnancy

• 2022, Diagnosed with Factor V (a protein involved in blood clotting), migraines continue, given pain meds and sent home

• 2023, January to August: severe migraines continue, lost all strength in left arm (prescribed pain meds and sent home), early Spring requested emergency visit with optometrist - booked until September, CT brain scans shows spot on back of neck but not to worry all is fine, MRI in June shows no issues, blurred vision turns to double vision, turns to can’s see light turns to almost blindness – now nearly 100% blind Tiffany gets an eye test done by a technician in Fredericton… results – positive, no issues even though SHE CAN’T SEE ANYTHING!! August, receives good news can see optometrist in August instead of September, immediately confirmed severe swelling around the optical nerves, additional CT scan and spinal tap done, meds provided and optometrist requested immediate visit to hospital, 3 blood clots identified (1 clot on both front and back of neck, 1 in brain), diagnosed with intercranial hypertension, 34 days in hospital and confirmed Tiffani will never get her eyesight back, at this point too much time lost and the eyesight damage cannot be reversed.

• 2024, Another CT scan revealed new blood clot and had to change to different blood thinner. Tiffani has kept strong through all this and remained manager at the Irving Greco between Centreville/Florenceville (huge thanks to the owners of this establishment for providing Tiffani the necessities to continue working without eyesight and to her fellow co-workers who support her). In a short period of time Tiffani was able to recognize voices for those who frequented the establishment and otherwise a sign and bell was provided, of course there were other staff on sight also.

• 2025, the loss of eye sight is not related to the Factor V diagnosis or “potential” JAK2 Positive diagnosis (this remains a separate medical diagnosis to be determined). Due to the head pressure, migraines, endless visits to the hospital for spinal taps, CT scans and MRI’s, Tiffani is not able to work. Krista (her mom) will never leave her side and not able to work while Tiffani remains in hospital (with no anticipated date of release).

A further update will be given after the bone marrow biopsy on Tuesday May 6, 2025.

Tiffani’s strength is one to be admired – she doesn’t complain, she’s extremely grateful to still be here today, preciously holds closely to her heart the love and support she’s getting from family, friends, co-workers, doctors, nurses. In her words, “Words can’t describe how grateful I am to still be here today and for the love and support I have had, to all my friends, family, co workers even the ones who work in a different building, all the doctors and nurses, and every single person in this community and the ones even out of province from the bottom of my heart I truly appreciate all of the love, generosity, your thoughts and prayers and all the help I’ve been given so I can re learn how to live. Words can’t describe how grateful I am to still be here today and for the love and support I have had.”.

If you’re able to contribute to Tiffani’s journey please know it’s deeply appreciated.

If e-transfer is preferred, Tiffani's email address is:

t i f f a n i t a y l o r 2 0 1 1 @ g m a i l . c o m