When we first learned that Pierce may have cancer, we were shocked and didn’t know quite what to do. Naturally, we immediately put our faith and trust into people we never met before. Eventually, we had to stop and question if they were best equipped to deal with the type of illness facing our child.
However, the first thing you can do after a verified diagnosis is to arm yourself with as much information as possible about that particular diagnosis and the prognoses associated with the different staging. For us, Pierce being diagnosed with Neuroblastoma (NB) meant that he had a relatively rare, but deadly form of solid tumor cancer.
We also began to search the internet to find that several centers of excellence in the country focused in NB specifically because of its high relapse rate and interesting genetics and behavior. So we sought out the best, most well equipped center for treating NB and that is what lead us to Memorial Sloan Kettering Cancer Center, who have a team of doctors that focus exclusively on NB. Generally at diagnosis, people will gravitate to a regional center that can offer the best course of treatment and perhaps go a little further if the case is particularly difficult or a rare subset of cancer.
In beginning this journey, you will have a lot of questions; here is a list of things to do to begin the process of understanding so that you can help provide the best care possible:
- Again, learn as much as you can about your child’s diagnosis.
- Seek out the experts in the field to treat the particular type of cancer your child is facing.
- Don’t be afraid to go to different hospitals for different disciplines (Surgery, Radiation, Chemotherapy).
- Ask questions no matter how silly or unrelated they may seem.
- Don’t try to do everything yourself, ask for help from those that offer. You will be amazed at the generosity of friends and even more by strangers
- Make a binder to hold all of your child’s medial information, these records belong to you and the hospital can provide them, some parents create spreadsheets to track all forms of treatment, procedures, medicines and test data.
- Take a deep breath; this will be a long battle. However, know that there are more and more promising results each day.
- Never, never, never give up.