I have had this list in mind for a few weeks, for some reason. Top Ten List of Tips for families facing relapse. Here ya go. It's just my thoughts, so take it with a grain of salt.
1. Statistics. Relapse statistics aren't good. Don't put too much weight in them though. Stats are based on yesterday's research. Doctors and researchers are working all over the world on this disease. They could roll out the silver bullet tomorrow. It's our job to try to keep our kid on the face of the planet until they figure it out. Who knows, some one might just win a Nobel Prize for medicine for cracking the code. Don't let the numbers get you down. No one has a crystal ball.
2. Reach out to other Docs. No matter where you are diagnosed, it is likely that relapsed NB will require some collaboration between treatment centers. The truth is no one center has all treatment options. You can shoot an email to an NB expert in a matter of minutes. Most of the time they get right back to you. Many families feel better after they reach out to Dr. Maris and team at CHOP, Dr. Kusher and Team at MSKCC and/or Dr. Sholler and team at Grand Rapids Michigan. These centers see a lot of kids facing relapse. They are rich in experience and options.
3. Let your family and friends support you. Say yes to delivered meals, child care, etc. To friends and family members: Try to never say "let me know if you need anything". Rather, try to offer one example of how you are personally motivated to help that grounds your offer in reality. For example, let me know if I can get Sophie to dance lessons. Let me know if I can send dinner to the hospital once a week while you are inpatient. Let me know if I can organize an airlines miles drive, or a meal delivery.
4. Research organizational support. A lot of families want to do it all alone. The reality is that relapse can be a long haul. Sometimes incomes are limited as it can be difficult for both parents to work in this setting. Relapse treatment can hit 20K each year in out of pocket expenses, especially with travel for treatement! Special organizations were set up to support families in this rough situation and keep them afloat. Talk to your social worker, look into CAN Coroporate Angel Network, National Children's Cancer Society, Ronald McDonald House, Sparrow Clubs, Alex's Lemonade Stand, etc. These organizations can be sustaining.
5. Re-evaluate your relationship with your Oncologist. This is a touchy subject, and one we usually avoid with a ten foot pole. But, you might find that there are subtle philosophical differences between you and your oncologist when you are facing relapse as opposed to front line therapy. All we can say is listen to your gut level instinct. Is your doctor on the same page? Is every cell in your body telling you to get a second opinion? Are you compelled to stay the course? It is important that your actions align with your instincts here.
6. This is our child. We sometimes feel that people may question a move we make or a treatment decision here or there. But, at the end of the day, this is our boy. We believe that God gave this baby to us specifically to do OUR best job with him. To us, that means we have to use every resource, every intuition, and even throw the occasionall fit, to see that he gets what he needs in his extreme circumstances. The way we see it, as his parents, it takes every gift and resource we have to get him through this. We feel obliged, honored, and responsible to do just that.
7. Don't fall asleep at the switch. Relapse can be a long, tiring process, lots of time last minute decisions are made and plans are worked out on the fly. No one will understand the current plan for your child better than you. You will have to advocate, advocate and advocate some more to keep hospitals on schedule and on the same page. Don't be shy. Mistakes and delays can be tragic.
8. Pace yourself, this is a marathon not a sprint.
9. Get informed. You can get valuable information by joining the ACOR N'Blast List Serve, and through the Children's Neuroblastoma Cancer Foundation. We recommend attending the Parent and Caregivers annual conference in Chicago at least one time, especially after frontline therapy prior to any relapse. It is an amazing resource.
10. Have a Top Five list. Have at least a cursory knowledge of treatment options available. Have about 5 therapies in mind you can talk to your doctor about. Things can change on a moment's notice. We find it empowering to have a short list of alternatives. Even if we found out we had to change up therapies tomorrow, we wouldn't feel like we were falling off a cliff.
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.