In case you have identified the best doctor in the world for your child, try to get yourself into his/her patient’s system by getting their second opinions at an early stage. In case you will need such a connection in the future, processes will be MUCH faster and easier when you already have a patient identification number with all the medical information already in their system.
If you travel abroad, use your time to meet with leading doctors face to face and establish your network for future needs.
Always think forward and prepare for future needs: in case there will be an escalation down the road, this will save your child precious time, save you the need to go through bureaucracy and will allow a direct channel of communication with the best doctor for your child.
The child is radioactive after the infusion so you cannot be with him for about one week. If you have a little child that doesn’t know how to keep himself busy (playing by himself or using an iPad for example) and you are about to do an MIBG therapy, teach him how to do so. It will help pass the time during the week long isolation from his parents.
If your child has recently been diagnosed with cancer, you must accept the fact that your life will never be the same. What you are about to go through is a new, unfamiliar, long and emotional experience. Difficult as it is, you must get over the initial shock and start to take action. Keep your thinking positive at all times and begin to prepare for the uncharted waters you are about to sail through. Now is the time to draft family and friends: it’s no time to be shy and they want to help. Let them! Assign tasks which will help you focus on your child’s most important needs and prepare the ground for the tough experiences ahead.
You must know that with cancer it is impossible to foresee what will happen at any given day, at any given moment. You must be available as parents first and foremost to see to the needs of your child, both medical and psychological. You must be prepared to be active participants with the medical staff on all medical procedures and treatments. All the other minor things, leave to friends and family.
Here are seven steps that parents should consider as a starting point:
- Choose a spokesperson: A close friend or family member who will be the main contact between you and the rest of your friendship/family circle. This spokesperson will accept all the phone calls of people wanting to know what is new and how is your child doing, and will coordinate visitors traffic. For example, when a friend wants to come and visit you but is not sure what to bring on a visit, what food if any is needed, when is a good time to visit etc. Keep in mind that your communication to your world does not end with you sharing the cancer diagnosis, in fact you will find many concerned people attempting to communicate, which may burden you more. Start a Facebook page where you can share updates and photos and where your friends and family can comment and show their support.
- Learn about the disease: It is incumbent upon you to research and study everything you can about the disease your child has and the treatments offered. This is the most challenging yet most important advice you will get. As parents we may never know as much as the doctors, but we must know enough to ask the right questions and understand the answers, in order to negotiate the best treatment for our child.
- Appoint someone to do research about your child’s specific illness. See where the experts are and what they recommend as treatment (the internet is a great resource). Use those experts for second opinions, as consultants, and see if the treatments your doctors recommend are aligned with those of your consultants. If not, understand what the differences are and WHY are there differences. Keep in mind that with juvenile cancer often time is critical. Since it could be that the best treatment will be available away from home, you must look for it immediately or as soon as possible after the initial diagnosis.
- GET A SECOND OPINION! ALWAYS!Â ALWAYS! Send biopsy to an independent third party for a second opinion. Make sure that the opinion is not just on the original diagnosis but on the protocol of the recommended treatment as well. A second opinion is crucial in order to (1) prevent your child from getting treatment for the wrong type of cancer, (2) avoid losing valuable time if you are on the wrong track, and (3) tailor the best treatment to your child’s specific condition, as different children may respond differently to the same treatment. Remember:Â Any good Oncologist would welcome second and third opinions. Additionally,Â You should always keep a full medical file of your child.
- Take charge of the discussions with the doctors and stay engaged and invovled with the medical staff (doctos and nurses). This will allow you better communication with the staff and sometimes you may actually prevent mistakes such as dis-communications or misunderstandings between the doctors and the nurses. You are your child’s gatekeeper.
- Contact your Insurance: Appoint someone to be the point man for the insurance company, to find out what is covered and what is not. Find out how much they will cover for treatment that involves travel etc. What’s the procedure for new and experimental treatments as well as other needs that may arise during treatment? Keep in mind that right now, at an early stage of your journey, that might not necessarily seem relevant but you should be prepared if later it becomes so. Insurance companies are generally huge bureaucracies and travel for cancer treatment brings out the most bureaucratic in these companies. This is a classic example of something you can hand off to a friend or relative to do, so that you can focus on caring for your child.
- Chores: The last thing you should be thinking of is shopping, cooking, laundry, cleaning etc. However, your sick child should have healthy food available and a clean environment to live in, especially when his/her immune system is weakend. Your friends and family can be a great resource for you to utilize for these things. Ask a family member to filter your mail and take care of your bills during this time so you won’t find yourself suddenly disconnected from the grid. Utilize them, so that your small daily issues do not become big issues.
It’s a long journey. Stay strong. Stay positive. Do your best. Be proactive.