This turns a family's world upside down. Phoenix will require heightened vigilance to watch for key symptoms- any fever spike will require a hospitalization.
However it is their goal to do their best to keep some regularity for all of them, including a home tutor to keep Phoenix caught up with his class and for Sage and Shakti.
After Phoenix's 1st day of treatment he had incapacitating headaches for 3 days and after 8th day of treatment, Phoenix had a seizure. He had to be rushed to the ER via ambulance to find out the cause. It turns out he had an adverse reaction to one of the chemotherapy medications called PRES (Posterior Reversible Encephalopathy Syndrome). Fortunately this reaction is documented in some cases and there is a treatment protocol. This reaction causes swelling in the back of the brain that causes headache, vomiting and seizure, vision changes. It is fully reversible and they will monitor his condition with imaging. As a result of this reaction and the seizure, he will need to be monitored at home 24/7. Richard and Rebecca have been educated in seizure safety, monitoring as well as dispensing of rescue medication for prolonged seizures.
Richard and Rebecca have been told that the first 3 months of treatment are generally the most intense. That they can expect hospital visits in between their twice a week clinic days to get blood or platelet transfusions or for fevers or dehydration. Some weeks Phoenix will have chemotherapy four days in a row. This is going to effect their capacity to maintain a regular work schedule.
They need your help. If you are able to give, we are collecting funds to support them:
- Caretaking for Phoenix where he will need someone 24/7, as well as needing 2 people for 3 days following chemo every week.
-Medical Bills including ambulance fees
-Loss of income due to hospital stays and caretaking
We are grateful for any and all support. If you would like to share this campaign with friends, please share the link. Thank you!
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- Abir Roy
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