10.27.16

Another day of small improvements for Sammy and definitely a busy day. He had visits from OT, PT and speech/feeding therapist today. The feeding therapist did some apple juice today, but is concerned about his swallowing. She will continue to come back, but will be more focused on oral stimulation instead of working on getting him to swallow. As he is coughing and worried about agitating him with all the extra coughing. PT and OT came in together. They were working on getting him to track with his eyes more. He is not focusing well and his eyes are pretty much always crossed currently. They worked with some bells and used a few other objects to grab his attention to follow with his eyes. They also brought us a chair for Sammy to sit in as one of his positions through out the day. They would like him up more, but he slouches down and this chair will help keep him in a good position. They sat him at the edge of the bed again as well. So working towards getting him out of bed and moving around some. Still limited because of the vent draining fluid from his brain.

Neurology seems pleased with how he is doing. They will be keeping him on an anti-seizure medication for a while just as a precautionary since he was showing some minor seizure behavior. They will want a follow-up MRI as well just to make sure the brain swelling has decreased the way it is supposed to and that there is nothing else causing the limited function in his limbs, which is mostly in his left arm currently. His other limbs are doing better. He is moving around both legs a ton, but his arms are not moving around much, if at all.

Sammy still has an elevated pulse and they are not totally sure what is causing it, but can be a number of things. He did not have any more fevers today, thankfully. But is still on medications for a possible infection until they get the results back from the draws they did yesterday. He also had an ultrasound today of his liver. It is showing larger than normal, but no news about what they will be doing for that, if anything at all. The other thing done today was they moved his feeding tube from being an ND to a NG. So before it was going past the stomach, now they pulled it back into his stomach.

We still have not had a visit from oncology yet about the pathology results, so hoping for a visit tomorrow. However, the results did come back yesterday. But we will not know the full extent or a treatment plan until we see the oncologist that will be handling Sammy’s case. The tumor came back as Medulloblastoma. It is the best outcome of the possibilities that were presented to us. This is good news for him. It is a rare brain tumor, but is more common than the other alternatives. Medulloblastoma from our googling makes up about 2% of all brain tumors, and about 15% of pediatric brain tumors. The recovery rate can be good depending on the risk and stage diagnosed, which we do not have currently. We most likely will not have that information until after he has a spinal tap done sometime next week. That will help determine if the cancer cells have spread. So for now we have a name, a preliminary diagnosis. It is no longer a ghost, but something concrete. Medulloblastoma. And I would be lying if I said I was not terrified of the road ahead. All we can do is trust. We have no idea where this road will take us or what his future holds, all we can do is trust that there is a greater plan. One we know nothing about. For now , we have been prepared for the likelihood of both radiation and chemotherapy treatments.  To expect at least year. But nothing is really known. As we know more, we will share more. So for now we continue to wait, with our main focus still being Sammy’s recovery from his brain surgery. We can do nothing about the next step until he is recovered from this first step.

PRAY for continued healing and improvements as Sammy’s brain and body recovers from surgery. PRAY he does not feel anxious about all the new things around him and all the things ahead. At this point we have no clue what he is processing or how much he is really grasping of any of this. PRAY that he continues to take baby steps in his recovery, especially in regaining his speech and mobility in all his limbs. PRAY that the cancer has not spread and that his risk is low. PRAY our Sammy continues to shine through the fog, little by little. PRAY for little brother, Logan, as he continues to fight his this virus, so that we can spend time as a family again. PRAY for our hearts to stay calm and be lead to the land of “what ifs”, especially as we await answers and our questions grow with the news of his preliminary diagnosis. PRAY we are able to surround Sammy with a spirit of calm and peace. PRAY Sammy always feels he is safe and loved, never scared, afraid or anxious. PRAY for all the staff that are surrounding Sammy regularly and that they have clear thought in the treatment of Sammy and nothing is overlooked. We have been blessed with a wonderful staff that seems to deeply care for Sammy as a patient. PRAY for rest, for all of us. That we each feel refreshed and rested at the start of each new day.