How to manage » Parents what to expect
As a parent of a child who has gone through the ordeal of Retinoblastoma there are certain things that I wanted to outline which may help you in coping and dealing with Retinoblastoma.
Fear has no place in this fight against retinoblastoma
You may have to see many unpleasant and heart wrenching things during this fight with retinoblastoma, some of them include; poking of needle into the vein of you child to deliver chemotherapy, handing over your kid to doctors for lazer therapy or examination under anesthesia and then waiting for you kid to wake up from anesthesia, and radiation therapy. The underlying emphasis is that every time your emotions will be tested and your resolve to fight against retinoblastoma hence it's important not to feel fear or have it showing on your face which will result in your child panicking as it increases his or her trauma.
Gather as much information on retinoblastoma
The first week is the hardest when you try to gather as much information and try to grasp as much as possible about retinoblastoma, you have to figure out a routine and appointments for ophthalmologist and take his / her advice as a guidance map towards fighting back against retinoblastoma.
Get a Second Doctor's Opinion
It is imperative that you take a second opinion of another ophthalmologist specializing in retinoblastoma supported by relevant diagnostic tests. Both the doctors should concur positively confirming retinoblastoma before starting any of the treatment options.
Manage the mental health of your family
The immediate issue is taking care of the mental health of your spouse who is distraught with dealing with such pain and coming to terms with the disease. As for the kid the just make sure he or she has as much fun as possible during doctor visits, make sure you fill up on their favorites sweets, chocolates, popcorn, ice cream basically anything that makes them happy after dealing with doctor which will be a traumatic experience for the child.
Keep your child happy
Once diagnosed and the treatment starts it's very important to keep your child happy and the family atmosphere light for the child as possible during the treatment, make it a game for the child. For every chemotherapy or examination under anesthesia that is completed treat the child with a toy, outing, lunch or do something what they love with them, anything to keep them happy like this tumor is nothing, day with doctor should end with lot of fun.
Few essential logistics
Inform about the condition of your child to the office and co-workers so that they understand why you need to take days off during chemotherapy and trips to the hospital. Adequate medical insurance is very important as this kind of treatment can be a burden on the pocket, it ensures that you have adequate resources to fight the disease head on. Its a long battle with medical follow up ranging between 2 years to 5 years, so keep your spirits high and prepare for the battle against this cancer & with God's grace you shall be victorious.