Seeking international medical care for a child with retinoblastoma is complex and expensive.
Family life may be ravaged by the experience. Many families delay care while seeking alternatives to recommended eye removal surgery.
Sadly too often the outcome is not what parents hoped for because of poor planning, limited communication and erratic follow up care..
Important questions must be put to the doctors and those helping you gain visas, travel and housing. You must be able to make decisions based on full knowledge of the financial, time and emotional commitments of international care.
You must also answer your own difficult questions to ensure your child has the best opportunity for life-saving care, and to protect the well-being of your entire family.
We hope the following will help you have clear conversations with all those involved in your search for your child’s best care.
Questions to Ask the Doctors
- What are the different treatment options for my child?
- What chance of saving sight / life do these treatment offer?
- What is your recommended treatment plan?
- How soon should we begin treatment?
- What is the total cost of this treatment?
- Does this include doctor’s fees?
- How long should we expect to be in the country?
- What is your plan for short, medium and long term follow up?
- Can you work with local doctors so my child is followed up at home?
- We can’t afford the treatment you are offering. Can you work with our doctors here to help our child get the treatment locally?
- We don’t know any good doctors locally. Can you help us find one?
Questions to ask about the doctor’s expertise in retinoblastoma.
Use the following “Ask the Doctor” pages for important questions about specific treatments.
Passports and Visas
- Do I need a visa for the destination country? If so, what type?
- Do I need to apply for a transit visa if passing through X country en route to the destination?
- How long will the process take to grant the passports / visas?
- Can I get same-day or expedited passports for me and my child?
- Can I get expedited visas for me and my child?
- What is the cost of the passport / visa for me and my child?
- Is there an additional levy for expedited documents?
- Where do I need to go to apply for the passport / visas?
- Do I need to take my child when applying for her passport / visa?
- What documents do I need to apply for the passport / visa?
- What are the specific photographic requirements?
Transport
- What are the costs of round-trip air travel?
- What is the cost of booking seats on an open return ticket?
- Does the airline have a “compassionate rate”?
- If the airline has a donated flights program, how does it work?
- How soon can I secure donated flights?
- Can a mission flight organisation help?
- What is the application process for a mission flight?
- Do I need medical referral for a mission flight?
Accommodation
- Is there family housing near the hospital?
- How much does an overnight stay cost?
- What are the application and waiting list procedures?
- Do local hotels have patient rates?
- What are the short- and long-term rates at local hotels?
- What is the cost of renting an apartment month-by-month?
- Is there an expatriate community that can help us?
Questions to Ask Yourself
- Can we afford this treatment, and all the other costs?
- How will the financial burden of international care impact our family?
- How will the long separation during treatment affect our family?
- If we go ahead with this treatment, can we afford follow up care?
- Do the doctors have a realistic follow up plan for our child?
- Will we be delaying treatment while we find the necessary funds?
- How much risk does this delay pose to our child’s life?
- Is life-saving treatment available in our country?
- Is pursuing treatment internationally worth the risk to our child’s life if life-saving treatment is available locally?
- If the worst happens and our child dies because we did not follow locally advised treatment, how will we cope as a family?
