Update on my Dad

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  • Post
    • October 18, 2016 at 12:44 am
    snow white
    Participant

      Hi All-

      whewwwww….its been a very eventful last few days.  I am finally at home to rest.  We stay with him 24/7 at the hospital, Mom and I take turns and I had him for 2 days straight, so exhausting since he can't do anything for himself. The hospital is about 40 miles one way from my house.

      Anyway, as of this moment he is doing much better.  He is regaining his movement back!!!  Moving that left arm and hand that was almost paralyzed before surgery, still struggling with the left leg and foot.  Obviously he is still very weak, but thats ok.  He is still in the hospital and physical therapy is working with him.  He will probably be transferred by ambulance to a rehab facility tomorrow for 7-10 days depending on how he does.  So that brings up another subject.  We are 11 days out from his Gamma Knife procedure.  We had hoped to start him on NIVO this coming friday, but we are being told that once he is checked in to the rehab that we can't take him out for his infusion???  they say that he has to stay there.  This concerns me as I am very anxious for him to get started ASAP with the NIVO.  I am going to dig deeper into this tomorrow when I go back down there.

      So far thats the latest.  Feeling relieved that he is doing better 🙂

    Viewing 8 reply threads
    • Replies
        • October 18, 2016 at 2:50 am
        JoshF
        Participant

          Jennifer- so happy to hear dad is improving. I understand getting him on Nivo quickly can provide benefit. I know timing can be key but as one onc at MDA told me, it still can provide benefit…effects of gamma knife work over a period of time. I wish I was wealth of info like my dear friend Celeste…her blog has tons of info on this. I just wanted to say I was thinking of you, Dad and family and glad he's doing better. Praying his healing continues!

          Josh

          • October 18, 2016 at 2:50 am
          JoshF
          Participant

            Jennifer- so happy to hear dad is improving. I understand getting him on Nivo quickly can provide benefit. I know timing can be key but as one onc at MDA told me, it still can provide benefit…effects of gamma knife work over a period of time. I wish I was wealth of info like my dear friend Celeste…her blog has tons of info on this. I just wanted to say I was thinking of you, Dad and family and glad he's doing better. Praying his healing continues!

            Josh

            • October 18, 2016 at 2:50 am
            JoshF
            Participant

              Jennifer- so happy to hear dad is improving. I understand getting him on Nivo quickly can provide benefit. I know timing can be key but as one onc at MDA told me, it still can provide benefit…effects of gamma knife work over a period of time. I wish I was wealth of info like my dear friend Celeste…her blog has tons of info on this. I just wanted to say I was thinking of you, Dad and family and glad he's doing better. Praying his healing continues!

              Josh

                • October 18, 2016 at 2:25 pm
                snow white
                Participant

                  Thanks for the input Josh.  I have been on Celeste blog quite a bit and you are so right, it is a wealth of information.  This is all so new to us, that everything is just spinning in my head trying to make it all "come together" so to speak.  For now, we are grateful that he is doing better, I am trying not to obsess over the NIVO and when it happens.  

                  Hope you are improving 🙂

                  • October 18, 2016 at 2:25 pm
                  snow white
                  Participant

                    Thanks for the input Josh.  I have been on Celeste blog quite a bit and you are so right, it is a wealth of information.  This is all so new to us, that everything is just spinning in my head trying to make it all "come together" so to speak.  For now, we are grateful that he is doing better, I am trying not to obsess over the NIVO and when it happens.  

                    Hope you are improving 🙂

                    • October 18, 2016 at 2:25 pm
                    snow white
                    Participant

                      Thanks for the input Josh.  I have been on Celeste blog quite a bit and you are so right, it is a wealth of information.  This is all so new to us, that everything is just spinning in my head trying to make it all "come together" so to speak.  For now, we are grateful that he is doing better, I am trying not to obsess over the NIVO and when it happens.  

                      Hope you are improving 🙂

                    • October 18, 2016 at 2:50 am
                    JoshF
                    Participant

                      Jennifer- so happy to hear dad is improving. I understand getting him on Nivo quickly can provide benefit. I know timing can be key but as one onc at MDA told me, it still can provide benefit…effects of gamma knife work over a period of time. I wish I was wealth of info like my dear friend Celeste…her blog has tons of info on this. I just wanted to say I was thinking of you, Dad and family and glad he's doing better. Praying his healing continues!

                      Josh

                      • October 18, 2016 at 2:50 am
                      JoshF
                      Participant

                        Jennifer- so happy to hear dad is improving. I understand getting him on Nivo quickly can provide benefit. I know timing can be key but as one onc at MDA told me, it still can provide benefit…effects of gamma knife work over a period of time. I wish I was wealth of info like my dear friend Celeste…her blog has tons of info on this. I just wanted to say I was thinking of you, Dad and family and glad he's doing better. Praying his healing continues!

                        Josh

                        • October 18, 2016 at 2:50 am
                        JoshF
                        Participant

                          Jennifer- so happy to hear dad is improving. I understand getting him on Nivo quickly can provide benefit. I know timing can be key but as one onc at MDA told me, it still can provide benefit…effects of gamma knife work over a period of time. I wish I was wealth of info like my dear friend Celeste…her blog has tons of info on this. I just wanted to say I was thinking of you, Dad and family and glad he's doing better. Praying his healing continues!

                          Josh

                          • October 18, 2016 at 1:34 pm
                          cancersnewnormal
                          Participant

                            So happy to hear he is improving! AND that you managed to get home for some rest.  : )  Is his oncologist comfortable with giving him the infusion prior to him checking in at a rehab facility? And does he have to remain there for the full 7-10 days? Hopefully a week or week and a half longer will not make much difference, if he has to delay the start of Nivo. From what I have read of other folks on the forum here, it seems as though responders began to notice tumor disappearance at around 6-8 weeks…. so after the second infusion. It's such a delicate balance between how fast the tumors in his head will crop up again… IF at all… and not treating too soon and making the edema of his already gamma treated tumors worse, causing yet more trouble with his physical abilities. I'm not sure there really is a "better or worse" answer in this case. It's so individual. Are they doing another MRI before releasing him to rehab? Is it possible to send him home and have a nurse or PT come in once per day or every other day? It sounds as though you and your mom are doing a great job taking care of him even while at the hospital! Is there a reason the docs prefer a move to rehab, versus home…. or is it mom who is concerned about the amount of work and possible emergency concerns? 

                            UGH… the roller coaster ride! It sounds like you're on an upswing though… sooooo… one chain click at a time! Take those little celebrations and run with them!  : )

                            • October 18, 2016 at 1:34 pm
                            cancersnewnormal
                            Participant

                              So happy to hear he is improving! AND that you managed to get home for some rest.  : )  Is his oncologist comfortable with giving him the infusion prior to him checking in at a rehab facility? And does he have to remain there for the full 7-10 days? Hopefully a week or week and a half longer will not make much difference, if he has to delay the start of Nivo. From what I have read of other folks on the forum here, it seems as though responders began to notice tumor disappearance at around 6-8 weeks…. so after the second infusion. It's such a delicate balance between how fast the tumors in his head will crop up again… IF at all… and not treating too soon and making the edema of his already gamma treated tumors worse, causing yet more trouble with his physical abilities. I'm not sure there really is a "better or worse" answer in this case. It's so individual. Are they doing another MRI before releasing him to rehab? Is it possible to send him home and have a nurse or PT come in once per day or every other day? It sounds as though you and your mom are doing a great job taking care of him even while at the hospital! Is there a reason the docs prefer a move to rehab, versus home…. or is it mom who is concerned about the amount of work and possible emergency concerns? 

                              UGH… the roller coaster ride! It sounds like you're on an upswing though… sooooo… one chain click at a time! Take those little celebrations and run with them!  : )

                              • October 18, 2016 at 1:34 pm
                              cancersnewnormal
                              Participant

                                So happy to hear he is improving! AND that you managed to get home for some rest.  : )  Is his oncologist comfortable with giving him the infusion prior to him checking in at a rehab facility? And does he have to remain there for the full 7-10 days? Hopefully a week or week and a half longer will not make much difference, if he has to delay the start of Nivo. From what I have read of other folks on the forum here, it seems as though responders began to notice tumor disappearance at around 6-8 weeks…. so after the second infusion. It's such a delicate balance between how fast the tumors in his head will crop up again… IF at all… and not treating too soon and making the edema of his already gamma treated tumors worse, causing yet more trouble with his physical abilities. I'm not sure there really is a "better or worse" answer in this case. It's so individual. Are they doing another MRI before releasing him to rehab? Is it possible to send him home and have a nurse or PT come in once per day or every other day? It sounds as though you and your mom are doing a great job taking care of him even while at the hospital! Is there a reason the docs prefer a move to rehab, versus home…. or is it mom who is concerned about the amount of work and possible emergency concerns? 

                                UGH… the roller coaster ride! It sounds like you're on an upswing though… sooooo… one chain click at a time! Take those little celebrations and run with them!  : )

                                  • October 18, 2016 at 2:33 pm
                                  snow white
                                  Participant

                                    Niki, those are all fantastic questions.  I will definitely be finding out some answers today.  My mom is obsessed with being close to the hospital.  I would prefer that he was home or at least closer to home.  It would be so much easier to help if they weren't 40 miles away.  But, I have tried to push this point, to no avail.  We have our motor home parked 10 minutes from the Hospital, so that has been somewhat helpful, although we (husband, myself and daughter) have to take care of animals and our business that we run from home.  

                                    I am headed down there this morning and will be digging for more answers.  Thank you as always for your much needed input, I really appreciate it 🙂

                                    • October 18, 2016 at 2:33 pm
                                    snow white
                                    Participant

                                      Niki, those are all fantastic questions.  I will definitely be finding out some answers today.  My mom is obsessed with being close to the hospital.  I would prefer that he was home or at least closer to home.  It would be so much easier to help if they weren't 40 miles away.  But, I have tried to push this point, to no avail.  We have our motor home parked 10 minutes from the Hospital, so that has been somewhat helpful, although we (husband, myself and daughter) have to take care of animals and our business that we run from home.  

                                      I am headed down there this morning and will be digging for more answers.  Thank you as always for your much needed input, I really appreciate it 🙂

                                      • October 18, 2016 at 2:33 pm
                                      snow white
                                      Participant

                                        Niki, those are all fantastic questions.  I will definitely be finding out some answers today.  My mom is obsessed with being close to the hospital.  I would prefer that he was home or at least closer to home.  It would be so much easier to help if they weren't 40 miles away.  But, I have tried to push this point, to no avail.  We have our motor home parked 10 minutes from the Hospital, so that has been somewhat helpful, although we (husband, myself and daughter) have to take care of animals and our business that we run from home.  

                                        I am headed down there this morning and will be digging for more answers.  Thank you as always for your much needed input, I really appreciate it 🙂

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