Sammy's adventure in fighting childhood brain cancer, Medulloblastoma, and Posterior Fossa Syndrome. Become a warrior in Sammy's battle and follow his journey for ways you can support him and his family along the way.
Wednesday, February 22, 2017
Worth Every Moment
It's hard for me when I let life slow down, and I take moments to reflect. 127 days ago our son attended preschool. I picked him up from what was just another day. And within hours arrived at the ER where they did a CT, and found that our precious 4 year old son had a massive brain tumor in his 4th ventricle. The air was sucked out of my lungs. For a moment I froze. It took me hours to call anyone. I didn't want this news to be true. And by sharing it, it would be fact. I couldn't let the words leave my lips. By 11pm the word cancer was dropped like an unwelcomed and unexpected bomb.
I never thought this would be our life. How did we end up here? You never think it will be your child. Until it is. And you definitely never expect it to be your child.
127 days. 18 weeks. That is the time we have spent in the hospital with our son. We have watched him through every moment. Every scream, every cry, every sleepless night, every puke covered pajama change. And every pee soaked bedding change. Every needle stick, every poke, and every blood pressure reading. Every therapy session. Every smile, every laugh, every word he's spoken, and every word unspoken too. Every chemo drug, every blood draw, and every blood transfusion. Every drip of IV fluids. Every sunset and every sun rise. We have been here together. Fighting for him. Fighting together. Waiting.
Our journey is still beginning. His story is only just starting. Cancer will forever be a part of his life. It will forever stay with him. Through the scars. Through the lasting side effects. Through the damage left to hopefully save him. Through the tests for many hopeful years to come. His life will forever be altered, no matter how this leg of his journey ends. Cancer will always haunt us. It will never be a distant memory, but forever apart of our everyday lives.
Sammy has logged 127 days in this journey. And still has at least that many ahead. We are hopeful he will get to go home before the start of next school year, but nothing is guaranteed in this journey, or in life. It is still hard and overwhelming to process that this is our life, our new normal. This shouldn't be our normal. It shouldn't be anyone's normal. But yet, here we are living this life. Living it each day. Each minute. Each heartbeat. Living it for him. Fighting with him. Because I couldn't imagine a life without him in it.
Saturday, February 11, 2017
2.11.17 :: Treatment Update
So for now we just wait. Wait until we get the okay to begin the next cycle of chemotherapy. And in the meantime we keep chugging away and making amazing progress in his therapies. In the last month Sammy has begun to talk and use verbal language to communicate with us. It is hard to understand, but he is trying and he is making sounds and words. It is so sweet to hear our son say mommy and daddy again. And also to hear him say "I love you." His journey is far from over and still very frustrating for both him and those around him, but we are chugging along. Giving him as much support as possible in helping to keep those frustrations down for all parties involved. Sammy has also begun to eat again. It is slow and he is very methodical in his chewing and swallowing. But he is doing it! His quantity is not very high as he is not used to having "meals." His g-tube feeds are continuous, at 60ml/hour. Which is only about 2 tablespoons of food per hour. So even if we stop feeds he really only does a few bites of food as that is all he can handle right now. Once we are done chemotherapy the feeding therapist will work on his meal volume and get him back to eating meals again. For now it is just about relearning the skill. We will focus on what he is eating and how much down the line. Sammy has also regained a lot of his functions. He is now sitting on his own. Still needing plenty of breaks, as it is hard work. But he is getting himself up on his own and sitting for longer and longer periods. We have also started to get him up in a supported standing position and even using a supported walking contraption, which he hates. But he is starting to get weight on his feet again. Our prayer and hope is that he will walk out of the hospital on the day we are finally discharged.
Sammy is doing Sammy. Just constantly shocking and awing everyone in his path. We have good days and bad ones, which is to be expected. But he always has his Sammy smile. And each day we feel like a little bit more of our Sammy returns to us. Slowly, but surly he is recovering. His recovery is remarkable. It surprises our nurses each time one comes back to work with us after a couple weeks of not seeing him. They are always amazed at his progress and how far he has come in such a short time frame. They are always surprised at his new skills and all that he is doing from week to week. We are so blessed. And God is so good.
PRAY for Sammy's continued recovery from posterior fossa syndrome. PRAY for continued healing of his brain and for protection from cancer cell growth. PRAY for his kidney function, that they heal and begin to function at normal range again. PRAY his blood counts continue to rise, so to delay the beginning of this 4th round as little as possible. PRAY for continued protection over his little body throughout this treatment process. PRAISE that his hearing has continued to be protected. PRAISE that we are hearing his voice. PRAISE that Sammy is gaining abilities again. PRAY for Logan in this journey and that he is protected from the stress and struggles on our family. PRAY for Logan's sleep, as he is having a hard time sleeping. PRAY for Charles and I, and our marriage. That we are able to continue to carve out time for each other and support each other in the best ways possible. PRAY that we can keep open lines of communication, and that we give each other grace where needed. PRAISE that we were able to spend some much needed time together while family was in town during the last half of January. PRAISE for the support of family and friends stepping in and helping to grant us the gift of time to spend together.
PRAY for Sammy's continued recovery from posterior fossa syndrome. PRAY for continued healing of his brain and for protection from cancer cell growth. PRAY for his kidney function, that they heal and begin to function at normal range again. PRAY his blood counts continue to rise, so to delay the beginning of this 4th round as little as possible. PRAY for continued protection over his little body throughout this treatment process. PRAISE that his hearing has continued to be protected. PRAISE that we are hearing his voice. PRAISE that Sammy is gaining abilities again. PRAY for Logan in this journey and that he is protected from the stress and struggles on our family. PRAY for Logan's sleep, as he is having a hard time sleeping. PRAY for Charles and I, and our marriage. That we are able to continue to carve out time for each other and support each other in the best ways possible. PRAY that we can keep open lines of communication, and that we give each other grace where needed. PRAISE that we were able to spend some much needed time together while family was in town during the last half of January. PRAISE for the support of family and friends stepping in and helping to grant us the gift of time to spend together.
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