Many parents are placed in an unimaginable situation where they have to figure out how to cope with finding out their child is seriously ill. In many instances, you cope because you will have no other option but to cope, you do the best you can for your child. Sometimes you cope well, and other times not so well. Give yourself permission to know you will take a few missteps along the way. Use your support team to keep you going and ask them to remind you to take a break. Again, self-care will keep you strong and better able to cope. What is good for you is best for your child as well. The better you cope, the better it is for your child and family.
Take each moment as it comes. As treatment evolves, your life and plans have to evolve too. This can be extremely hard for people that are planners by nature. The reality of treatment is hard. You will not be able to plan far into the future so try to let this go. Having tentative plans is great! Having plans set in stone likely will not work well, and can set you up for additional disappointment.
Osteosarcoma treatment is all consuming, but many families (and/or caregivers) have financial and insurance obligations that require them to work. Discussing options with the social worker at the hospital, your boss, human resources, etc. can often help in determining what options exist for you and your spouse. This is another example of how learning to share information that you might normally consider personal or private can help. Your boss and co-workers will only understand the demands placed on you if you share your experience with them. For your own health and relationships, having balanced conversations is also necessary. Share your cancer fight when appropriate, but also be sure to continue to have conversations that don’t revolve around cancer. With understanding comes compassion. Discussion of how to use vacation time, FMLA (family medical leave act), non-paid leave, etc. will allow you to understand your options. Relying on family and close friends can help alleviate the demands of treatment allowing you to work. Someone, other than you, may be able to spend time with your patient or take him/her to appointments while you go to work. Someone can sit with your child, so you can go to his/her sibling’s ball game or celebrate some special occasion with them. Balance is difficult but important.
A common quote is, “Hard times reveal true friends.” Unfortunately, many people find that some of the people they expect would be there in tough times, are strangely absent. That can be terribly disappointing but does not necessarily negate them as being a friend. Remember you had no understanding of what life with osteo was like before your patient was diagnosed, your family and friends don’t either. Some people will be absent because they don’t understand and not necessarily because they don’t care. Some people will disappoint us not because they intended to, but because despite their best efforts they fell short of what we needed or expected. People doing their best are doing their best. We can avoid becoming bitter if we accept what is and enjoy what is offered instead of focusing on what is absent. The other side of the coin is you will likely find there are unexpected people who show up that you didn’t foresee!
Often our personal team, families, and friends, feel so terribly powerless and want to do anything to help. Some ways they may be able to help are:
• Organize a blood or platelet drive (receiving blood products is usually necessary at some point during treatment)
• Organizing a meal train for the family (be sure to give guidance about restrictions based on tastes or items not allowed when neutropenic)
• Giving gift cards for meals, gas or household supplies
• Taking siblings on a special day
• Sit with the child while caregiver has time for self-healing through a massage or some other favorite activity or can go to work or spend time with another family member
• Small gifts from an Amazon registry
• Lawn care or house cleaning
• Pet care
• Contributing to osteosarcoma-specific research in your patient’s name
MIB Agents set out to help families and children who are coping with osteosarcoma. The MIB Ambassador Agents program connects patients and caregivers to osteosarcoma survivors. Ambassador Agents are dedicated to providing support and hope. As individuals who have walked the osteosarcoma path, they are here to understand and hear you, you are not alone. A cancer diagnosis is an isolating experience for both the patient and their family. Suddenly, you no longer share the same everyday occurrences as your friends, peers, co-workers and extended family. You are trying to navigate your way through unknown territory without Google Maps and you feel isolated. MIB is here to make it better. To learn more about the Ambassador Agents program, view our programs.
*No two osteosarcoma patients are the same, therefore there is no substitute for the expert care of your medical team. This is not meant to replace the guidance of your oncology team. It is meant to share resources, information and support.
