From Dave and Chrissie:
Thank you to all who have so generously contributed to helping our family since Henry's diagnosis of metastatic medulloblastoma. It means so much that
Henry successfully completed 30 rounds of radiation to his brain and spine, with a boost to his tumor bed, or the location of where to originating tumor was removed from. He also underwent weekly chemotherapy during his radiation regimen.
Upon completion of radiation, Henry was given a one month break so that his body could rest and recuperate. However, about two weeks into this break, he lost the ability to walk. His leg motor function weakened severely with no real warning. Henry was admitted back to Goryeb Children's Hospital for observation and his scheduled follow up MRI of his brain and spine was moved up and done. It was seen that the cancer in the brain and spine is much improved, however there was an area of enhancement in the spine that would account for the leg motor function issue. The cause is unknown. The MRI was repeated three weeks later and the scans were sent to Memorial Sloan Kettering for additional consultation. It is currently believed to be spinal cord damage from the cancer and the recovery of the nerves is unknown.
At the moment Henry is confined to a wheelchair but he receives physical therapy every day and continues to get stronger so that he can do more.
Henry is about to start his second of six chemotherapy in patient cycles at Goryeb. We hope that he tolerates the medicine as well as he did last month. He should complete his chemotherapy treatment in November if his MRIs continue to show a reduction in cancer.
Henry's need for tube feeding is still very strong. Without the prescribed steroid, he doesn't have the desire or appetite for food. Therefore, it is essential that he get the caloric intake and hydration necessary for him to stay as healthy as possible. This requires Chrissie to be here around the clock to continue to care for him. With feedings at home, hydration through the tube, and inconsistent bowel functions, it is essential that Chrissie remain home and not return to work.
Henry has a very long road ahead. He will undergo a lengthy dental procedure later this month to repair several teeth damaged from chemo and radiation. His physical therapy is ongoing and equipment is starting to be needed for his every day living. The goal is to get Henry cured of cancer. Next goal is to get Henry's legs stronger and see how much nerve function can be returned. The latter we will have to be patient for. As the old saying goes, "Slow and steady wins the race."
Our twin sons, Charlie and Joe will begin their second year of college at the end of the summer. We are beyond proud of how they both managed to complete their first year of college successfully, especially given how Henry received his diagnosis just days before they returned to school to begin second semester. The boys have been by Henry's side every free moment they have and they wouldn't have it any other way. But we want them to know that their future AWAITS!! College is a path they need to remain focused on and continue to strive to do their best.
Our family remains so incredible humbled by the support that everyone continues to give us. We know that this life we are living is not one we would have every thought we would be waking up to every day, but we are walking through it together, the five of us. Having the support of friends, family, community, and so many others who are touched by Our Boy Henry is just the most amazing gift. Our very deep thanks.
Dave and Chrissie Aulenbach