Liam was diagnosed with High Risk ALL B-Cell on 1/16/2020 (After being misdiagnosed a few months prior). Due to that, he did not go into remission after the first round of chemo like they expected, which then moved him to an “extremely high risk” category of relapse. As it stands, he will undergo treatment for the next 3 1/2 years.
We go to and from Charleston twice a week (give or take) which is over a 4 hour drive back and forth for us. Which is difficult sometimes. Also caring for Liam, I have a 5 year old, as well as a 8 month old at home who are affected by this, too. In the midst of all of this happening, I was let go from my job after being under the impression I was covered by FMLA. With everything happening with Covid, it is virtually impossible to work now without fear of risking myself getting sick and passing it to children, ESPECIALLY him. So working is just not an option now. I am a single mom as well.
On top of Liam being diagnosed with ALL, he has also developed bad neuropathy in his legs (now walks with a limp and has drop foot) we also found out he has a blood clot on his heart that cant be removed via heart cath. So he gets blood thinner injections twice a day (platelets permitting) and we hope it helps, if not, open heart surgery is not off of the table. He has also been diagnosed with osteopenia (very brittle bones) currently has a fractured foot and is in a cast now using a wheelchair.
Back in April ‘20 we were admitted for a little over 2 months because Liam developed a severe fungal infection/ double pneumonia in his lungs, during that stent in the hospital, he also developed ICU psychosis (basically out of touch with reality) Later that year we spent another 2 months admitted. After we were discharged, we had to move in with my parents because living alone with all of this going on was not an option.
Trying to get back on my feet during this has been extremely hard and tiring. We all just want some normalcy. We never want to be a burden.