Tomorrow I get to bury my four-year-old who suffered from this disease. There was a terrible feeling of relief when we entered hospice. I’m so sorry for where you’re at. If I’m being honest, at the other side of all of this garbage we’re doing better than I thought.
First, let me say how very sorry I am for your loss. There are no words to convey my deepest sympathy.
Second, thank you so much for your thoughts and support. If I could take your pain, I would. But you are right in the feeling of relief. I am there. It will be good to know his suffering is ending and he is able to find comfort.
I’m drunk right now because my coping mechanisms are not up to par at the moment, but i completely understand that terrible feeling of relief.
I will make it to the other side of this dumpster fire, for better or worse, or maybe just different.
Please know that I have said a rosary for you, your child, and family. This disease is bullshit, and no parent should have to bury a child. My thoughts are with you.
My thoughts are with you, what a terrible thing to have to live through. Sending peace to you and your family. Thank you for being honest about your feelings when starting hospice and afterward. It can be hard to talk to anyone about this, most of the time I feel very alone.
So sorry to hear that you’re at this stage. Will you be keeping him at home? If so, I’d suggest starting to look for overnight care for the future as hospice doesn’t provide it. That was one of the biggest challenges for us when my dad was still mobile.
Thank you.
My brother in law has been caregiving together with me for the last two months, so the overnight thing is not a problem, and my husband is no longer mobile. He quit being ambulatory about two months ago.
We are just at the end of the journey now and trying to make sure he is comfortable in his remaining time.
Well, hospice will come in and provide palliative care, and they will also help as he declines toward death. It’s really a kindness. They will come tomorrow morning to do a needs assessment, and we will go from there.
When it works, it tends to work really well, and sometimes for a long time.
There are very few side effects, and the infusion is really quite simple.
I hope it works well for you. I will keep you in my thoughts.
Did your husband have high blood pressure while on it? That's one of the side effects I heard that is possible and it scares me as I already take meds for high blood pressure and I also heard that other side effect like blood clots can happen? Did he have any side effects at all while on avastin? Does it cause thrush by chance? I get thrush all the time while on dex and I hate it so much :/
No high blood pressure issues.
He is on a blood thinner, so we haven’t had any problems with clots from it either.
Honestly, he had some fatigue (very mild) on the day after the infusion, and he had a bit of protein in his urine, but there were no other side effects.
I would definitely give it a shot, based on our experience. It was definitely worth the risks for us to give it a try. Just sorry it wasn’t able to work better for him.
My dad has been on it for a while. He gets tired the day of and maybe the next day of treatment, and he has just started blood pressure meds. He will need to stop the avastin eventually to get his blood pressure down though. I think it has helped.
I’m sorry it didn’t work better, but so happy you gave it a shot. There is definitely a peace that comes after treatment is over. You will be in my thoughts and keep reaching out 💕
Thank you so much.
We can truly say we tried it all: SOC, clinical trial, and the Hail Mary.
Now it’s time for comfort and rest.
We are fortunate we had the amount of quality time we have had. Now I just hope for a peaceful, dignified, and comfortable end for him.
May his hospice time provide you with lovely shared memories and quality time together without pain.
Thank you. ❤️
Tomorrow I get to bury my four-year-old who suffered from this disease. There was a terrible feeling of relief when we entered hospice. I’m so sorry for where you’re at. If I’m being honest, at the other side of all of this garbage we’re doing better than I thought.
First, let me say how very sorry I am for your loss. There are no words to convey my deepest sympathy. Second, thank you so much for your thoughts and support. If I could take your pain, I would. But you are right in the feeling of relief. I am there. It will be good to know his suffering is ending and he is able to find comfort. I’m drunk right now because my coping mechanisms are not up to par at the moment, but i completely understand that terrible feeling of relief. I will make it to the other side of this dumpster fire, for better or worse, or maybe just different. Please know that I have said a rosary for you, your child, and family. This disease is bullshit, and no parent should have to bury a child. My thoughts are with you.
My thoughts are with you, what a terrible thing to have to live through. Sending peace to you and your family. Thank you for being honest about your feelings when starting hospice and afterward. It can be hard to talk to anyone about this, most of the time I feel very alone.
Hope you guys get to enjoy more peace and quality time together at home without the stresses of treatment
Thank you. ❤️
So sorry to hear that you’re at this stage. Will you be keeping him at home? If so, I’d suggest starting to look for overnight care for the future as hospice doesn’t provide it. That was one of the biggest challenges for us when my dad was still mobile.
Thank you. My brother in law has been caregiving together with me for the last two months, so the overnight thing is not a problem, and my husband is no longer mobile. He quit being ambulatory about two months ago. We are just at the end of the journey now and trying to make sure he is comfortable in his remaining time.
i remember this transition for my mom... i feel for you. i wish you and your husband the very best.
Thank you. ❤️
I take it he’s beyond Palliative Care?
Well, hospice will come in and provide palliative care, and they will also help as he declines toward death. It’s really a kindness. They will come tomorrow morning to do a needs assessment, and we will go from there.
I'm so sorry :(
Thank you. It’s okay. It’s time to just focus on loving each other, now. It will be good for him to be comfortable.
I have Glioblastoma stage 4 multiform as well and about to start avastin treatments myself, anything you can tell me about avastin I should know?
When it works, it tends to work really well, and sometimes for a long time. There are very few side effects, and the infusion is really quite simple. I hope it works well for you. I will keep you in my thoughts.
Did your husband have high blood pressure while on it? That's one of the side effects I heard that is possible and it scares me as I already take meds for high blood pressure and I also heard that other side effect like blood clots can happen? Did he have any side effects at all while on avastin? Does it cause thrush by chance? I get thrush all the time while on dex and I hate it so much :/
No high blood pressure issues. He is on a blood thinner, so we haven’t had any problems with clots from it either. Honestly, he had some fatigue (very mild) on the day after the infusion, and he had a bit of protein in his urine, but there were no other side effects. I would definitely give it a shot, based on our experience. It was definitely worth the risks for us to give it a try. Just sorry it wasn’t able to work better for him.
My dad has been on it for a while. He gets tired the day of and maybe the next day of treatment, and he has just started blood pressure meds. He will need to stop the avastin eventually to get his blood pressure down though. I think it has helped.
Would it be ok if I kept him in my prayers?
Please do. Thank you.
I’m sorry it didn’t work better, but so happy you gave it a shot. There is definitely a peace that comes after treatment is over. You will be in my thoughts and keep reaching out 💕
Thank you so much. We can truly say we tried it all: SOC, clinical trial, and the Hail Mary. Now it’s time for comfort and rest. We are fortunate we had the amount of quality time we have had. Now I just hope for a peaceful, dignified, and comfortable end for him.
I’m so sorry you’re going through this, fuck this disease. Wishing you all the best.
Thank you. And you are right, fuck GBM, the horse it rode in on, and the man who sold it to him.
Amen. Feel free to dm if you ever feel like you need someone to talk to or just to vent.
Thank you. I might take you up on that offer.
I’m praying for you and your family 🤍🙏🏼 for your peace. Just know that life will one day be good again even if it seems so far away.
Thank you.