Journal entry by Linda Minkoff —
Hi Everyone, we want to give you all an update on Miles and his health. To start, he is feeling GREAT! He has excelled in his development and is crawling, standing (while holding onto something), clapping and he is communicating more than ever. He is pretty much on track with peers his age. He has a new found love for cars and trucks and absolutely adores his sister.
Miles still has issues with his swallowing. He has been diagnosed with Pharyngeal Dysphagia , which is a type of swallowing disorder. Miles' swallowing difficulties consist of aspiration with thin liquids. When Miles swallows milk or water he consistently intakes the liquids to his lungs instead of going to his stomach. He has had an NG tube (a tube that is in his nose and drops down his esophagus directly to his stomach) since he was diagnosed with cancer back in November. We have seen GI doctors as well as ENT doctors, speech therapists, occupational therapists and feeding specialists. It has been determined that with some OT/SP therapy, growth and time this issue should resolve on its own. Miles will have surgery on May 17th to have a G tube placed directly to his stomach so that we can remove the NG tube. NG tubes are a short term solution to feeding difficulties. The G tube will be a safer and better fit for Miles' lifestyle as he is very mobile and pulls out the NG tube at least 3 times a week. He also needs to relearn how to swallow and that can be difficult to do when there is a tube in his throat. The G tube is port that will be with him for an undetermined amount of time. As parents it makes us sad that Miles cannot drink from a cup, but it is good to know that there are solutions to help him while he relearns how to swallow. Any positive thoughts and prayers for Miles on May 17th for his surgery are always welcomed! Most importantly, his GI doctor and dietician said that he should be feeling well enough to have a cupcake on his 1st birthday on May 19th :)
Cancer Update:
On May 25th Miles will get his first sets of scans since completing chemotherapy and being declared NED (No Evidence of Disease). He will be put under general anesthesia for the 9th time while he gets an MRI of his chest and spinal cord. His oncology team is looking for no change in the size of the tumor. Though his tumor shrank by at least 75-90% since being treated with chemotherapy, it is still there. It is considered benign. But, again, it is still inside his body. There is a 15% chance of reoccurrence and we are experiencing "scanxiety".
Miles has shown no symptoms of his tumor awakening and becoming cancerous again. However, every day when he wakes up we cannot help but look him over, check his face, his eyes, his body for anything abnormal. When Miles takes a longer nap we worry that he is fatigued (a symptom of neuroblastoma). When he doesn't eat a large amount for dinner we worry that he is losing his appetite (a symptom of neuroblastoma). This is still all so fresh and new to us. Miles' 3 months of chemotherapy ended in January and that feels like a lifetime ago, but as his parents we have so many emotions that are still with us. These emotions will most likely stay with us for the rest of our lives.
Miles is really starting show his personality and his likes/dislikes. He loves dogs and will actually laugh out loud watching Banjo play in the backyard. He loves his toy trucks and cars and can play with them by himself for quite some time. His favorite food is salmon and would eat it at every meal if he could. He does not like getting his diaper changed or when you take a toy car away from him. Overall, Miles is thriving and has such a zest for life. He shows us this by waking up every day around 5am ready to play, talk and eat. We wish we had the energy that he has in the morning!
We will update you all when we get the results of his scans. We have so much hope that everything will come back as "unchanged". Much love to you all.
- Adam and Linda
Miles still has issues with his swallowing. He has been diagnosed with Pharyngeal Dysphagia , which is a type of swallowing disorder. Miles' swallowing difficulties consist of aspiration with thin liquids. When Miles swallows milk or water he consistently intakes the liquids to his lungs instead of going to his stomach. He has had an NG tube (a tube that is in his nose and drops down his esophagus directly to his stomach) since he was diagnosed with cancer back in November. We have seen GI doctors as well as ENT doctors, speech therapists, occupational therapists and feeding specialists. It has been determined that with some OT/SP therapy, growth and time this issue should resolve on its own. Miles will have surgery on May 17th to have a G tube placed directly to his stomach so that we can remove the NG tube. NG tubes are a short term solution to feeding difficulties. The G tube will be a safer and better fit for Miles' lifestyle as he is very mobile and pulls out the NG tube at least 3 times a week. He also needs to relearn how to swallow and that can be difficult to do when there is a tube in his throat. The G tube is port that will be with him for an undetermined amount of time. As parents it makes us sad that Miles cannot drink from a cup, but it is good to know that there are solutions to help him while he relearns how to swallow. Any positive thoughts and prayers for Miles on May 17th for his surgery are always welcomed! Most importantly, his GI doctor and dietician said that he should be feeling well enough to have a cupcake on his 1st birthday on May 19th :)
Cancer Update:
On May 25th Miles will get his first sets of scans since completing chemotherapy and being declared NED (No Evidence of Disease). He will be put under general anesthesia for the 9th time while he gets an MRI of his chest and spinal cord. His oncology team is looking for no change in the size of the tumor. Though his tumor shrank by at least 75-90% since being treated with chemotherapy, it is still there. It is considered benign. But, again, it is still inside his body. There is a 15% chance of reoccurrence and we are experiencing "scanxiety".
Miles has shown no symptoms of his tumor awakening and becoming cancerous again. However, every day when he wakes up we cannot help but look him over, check his face, his eyes, his body for anything abnormal. When Miles takes a longer nap we worry that he is fatigued (a symptom of neuroblastoma). When he doesn't eat a large amount for dinner we worry that he is losing his appetite (a symptom of neuroblastoma). This is still all so fresh and new to us. Miles' 3 months of chemotherapy ended in January and that feels like a lifetime ago, but as his parents we have so many emotions that are still with us. These emotions will most likely stay with us for the rest of our lives.
Miles is really starting show his personality and his likes/dislikes. He loves dogs and will actually laugh out loud watching Banjo play in the backyard. He loves his toy trucks and cars and can play with them by himself for quite some time. His favorite food is salmon and would eat it at every meal if he could. He does not like getting his diaper changed or when you take a toy car away from him. Overall, Miles is thriving and has such a zest for life. He shows us this by waking up every day around 5am ready to play, talk and eat. We wish we had the energy that he has in the morning!
We will update you all when we get the results of his scans. We have so much hope that everything will come back as "unchanged". Much love to you all.
- Adam and Linda
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