12/2:
In support of
Bringing Hope and Healing to Gabe
View Support Registry
Bringing Hope and Healing to Gabe
12/2:
We are back in-patient for Gabe's third cycle of chemotherapy. This stay should only be three days. Each cycle hits a bit harder, and unfortunately he's feeling pretty unwell after beginning this cycle yesterday afternoon.
Last Monday, his neurosurgeon wanted a shunt tap - where they take CSF fluid out of his VP shunt - to check on the status of the potential infection he was dealing with in early October during our more lengthy stay prior to beginning cycle three of chemo. They let the test sit to see if any bacterial cultures grow, and so far, no growth, but they will monitor it for 10 days to be certain. Good news so far! A shunt infection would've greatly impacted the course of treatment. It would've meant the removal of the VP shunt, and placing a new external drain for CSF which meant he would've had to be in-patient until a new shunt could be placed (minimum of two weeks to heal after shunt removal and drain placed), and delayed his chemotherapy. The external drain was very difficult for him, so we absolutely did not want to have to go that route again, especially since he's dealing with so much right now.
Last Wednesday, he had another MRI to monitor his tumor, as well as the inflammation in and around his brain, and his spinal column. Overall, it was very reassuring that we are heading in the right direction! The tumor is shrinking and inflammation is improving. No hydrocephalus or cerebral edema. No signs of metastasis in the brain or spine. There are issues that will continue to be monitored related to his three brain surgeries, external drain placement and removal, VP shunt placement, etc. He has blood throughout locations in his brain related to these surgeries that hopefully will be able to clear up on its own.
We meet with the radiology team in two weeks to go over the radiation aspect of his protocol. To be honest, Gabe and I are both anxious about it. We want clear answers and expectations, and I hope this appointment will put us a bit at ease going forward.
He will have another cycle of chemotherapy the week of Christmas where we will be in-patient again. Since our family exceed the visitor count, and he can't often leave his room due to being immunocompromised and the schedule that he's on for checks, chemo, fluids, etc, and very soon they will restrict visitors entirely due to the RSV season, it's been particularly difficult this holiday season to be in-patient. Our family really cherishes the traditions we have created and being together is what we want most.
We are immensely grateful that we have had good news the past week and we will continue on that path. We hope that Gabe is comfortable and is able to have fun and enjoy this holiday season in between his in-patient stays. We hope that we all will be healthy, and together as much as possible. We hope that no cultures grow from the shunt tap and that his MRIs continue to improve and the issues present will resolve. We hope that he will not require any transfusions. We hope that we can continue to provide him with the supportive care he so desperately needs and deserves. We just want to get through this chapter and help him truly heal and thrive after treatment.
We cannot express adequately enough just how appreciative we are to everyone who has supported us on this journey. Thank you for checking in, for offering support in whichever way you're able, for the continued prayers and well-wishes for Gabe and our family, and for the financial support that is allowing us to give Gabe the care he needs - it is a true gift and a relief in this very difficult time. Please keep sending all the positivity his way.
Fun Gabe Fact: He loves the movie "Elf". He wears his "Elf" shirt all the time, it is his top requested Christmas movie, and he picked out a 1000 piece "Elf" puzzle to work on during this hospital stay. Here is our sweet guy with his favorite Christmas character while out on a walk last weekend, and working on his puzzle this morning.
We are back in-patient for Gabe's third cycle of chemotherapy. This stay should only be three days. Each cycle hits a bit harder, and unfortunately he's feeling pretty unwell after beginning this cycle yesterday afternoon.
Last Monday, his neurosurgeon wanted a shunt tap - where they take CSF fluid out of his VP shunt - to check on the status of the potential infection he was dealing with in early October during our more lengthy stay prior to beginning cycle three of chemo. They let the test sit to see if any bacterial cultures grow, and so far, no growth, but they will monitor it for 10 days to be certain. Good news so far! A shunt infection would've greatly impacted the course of treatment. It would've meant the removal of the VP shunt, and placing a new external drain for CSF which meant he would've had to be in-patient until a new shunt could be placed (minimum of two weeks to heal after shunt removal and drain placed), and delayed his chemotherapy. The external drain was very difficult for him, so we absolutely did not want to have to go that route again, especially since he's dealing with so much right now.
Last Wednesday, he had another MRI to monitor his tumor, as well as the inflammation in and around his brain, and his spinal column. Overall, it was very reassuring that we are heading in the right direction! The tumor is shrinking and inflammation is improving. No hydrocephalus or cerebral edema. No signs of metastasis in the brain or spine. There are issues that will continue to be monitored related to his three brain surgeries, external drain placement and removal, VP shunt placement, etc. He has blood throughout locations in his brain related to these surgeries that hopefully will be able to clear up on its own.
We meet with the radiology team in two weeks to go over the radiation aspect of his protocol. To be honest, Gabe and I are both anxious about it. We want clear answers and expectations, and I hope this appointment will put us a bit at ease going forward.
He will have another cycle of chemotherapy the week of Christmas where we will be in-patient again. Since our family exceed the visitor count, and he can't often leave his room due to being immunocompromised and the schedule that he's on for checks, chemo, fluids, etc, and very soon they will restrict visitors entirely due to the RSV season, it's been particularly difficult this holiday season to be in-patient. Our family really cherishes the traditions we have created and being together is what we want most.
We are immensely grateful that we have had good news the past week and we will continue on that path. We hope that Gabe is comfortable and is able to have fun and enjoy this holiday season in between his in-patient stays. We hope that we all will be healthy, and together as much as possible. We hope that no cultures grow from the shunt tap and that his MRIs continue to improve and the issues present will resolve. We hope that he will not require any transfusions. We hope that we can continue to provide him with the supportive care he so desperately needs and deserves. We just want to get through this chapter and help him truly heal and thrive after treatment.
We cannot express adequately enough just how appreciative we are to everyone who has supported us on this journey. Thank you for checking in, for offering support in whichever way you're able, for the continued prayers and well-wishes for Gabe and our family, and for the financial support that is allowing us to give Gabe the care he needs - it is a true gift and a relief in this very difficult time. Please keep sending all the positivity his way.
Fun Gabe Fact: He loves the movie "Elf". He wears his "Elf" shirt all the time, it is his top requested Christmas movie, and he picked out a 1000 piece "Elf" puzzle to work on during this hospital stay. Here is our sweet guy with his favorite Christmas character while out on a walk last weekend, and working on his puzzle this morning.
Comments