41 Week Update

I apologize for the horrible way this post is posting in wordpress right now.  It is one jumbled mess.  I can’t figure out why.
Facebook Post 1/9/2013
I’ve had many inquiries about how my father is doing and I have been waiting for the ok from my mom to post an update. As you know he had surgery at the end of November to remove a new brain tumor. Within the 19 days from surgery to his post op MRI he has had 3 new tumors grow. Due to how quick the progression was he isn’t a candidate for most Glioblastoma treatments. As a family we have thought and prayed about where we should go from here and all agree that my father would want to stop all treatment and live the rest of his time happy and peaceful. He is in no pain and shouldn’t be. That is one blessing with this type of cancer. We aren’t getting the length of time with him that we all hoped for but are so grateful for the time we have had this past year making wonderful memories and strengthening our bond as a family. My mom has been amazing through all of this with her positive attitude and never ending love for my dad. (There truly are “happily ever afters” in this world. My parents have had one for 45 years.) Please keep my parents in your prayers. We are so thankful for the love and support we have received over the past year. Thank you.
The outpouring of love from our family and friends has been overwhelming.  This is one thing about facebook I do like.  My mom is glad she doesn’t have to keep telling this information over and over again to everyone.  She met with Hospice yesterday and they will start their visits tomorrow.  She felt really good about their meeting and got lots of information and questions answered.  I will be heading down next week to spend some time with my dad before he gets worse.  He is still up and walking around.  He still has an appetite and is eating, not a lot though.  He doesn’t talk much, but does answer my mom’s questions and will say a few short sentences here and there.  Sometimes it is like he is speaking his own language of made up words though I am told.  I haven’t talked to him for a few days since it is hard for him to remember who he is talking to on the phone and gets distracted easily.  It makes me sad.  I have really grown to enjoy our daily calls over the past 10 months.
Today I am home with my sick 5 year old.  I took some time and explained death to her and how grandpa was sick and was going to die soon.  At first she couldn’t grasp why the doctors couldn’t just go in and fix it.  That is what they do when she gets sick.  I told her that sometimes things just can’t be fixed.  Then I told her about heaven and that so many people were waiting for grandpa and they will be so happy to see him.  I reassured her that he wouldn’t be alone or scared and he would be happy to see them too.  I have been struggling with this for a few months.  How and when to tell her.  She understood it better than I thought.
If any of you out there reading this have already gone through this I would love some idea on how the next few weeks/months are going to be.  I know every situation is different.  I would just like to be aware of the all the possibilities.  I have read the web site brainhospice.com and thought it was very informative.  Very worth the time to read it. I would be very interested in your experiences too.
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3 thoughts on “41 Week Update

  1. My husband passed away on Dec. 29. The ending presented itself as him sleeping about 22 hours a day. He would seldom speak, eat very little, basically a shell of his former self. It was just heartbreaking. He then had a seizure and was put in inpatient hospice. He progressively slept 24 hours a day and stopped taking any liquid or food. I was always scared of the end but hospice kept him comfortable with Ativan and morphine. He just took a breath and didn’t take another one. He left peacefully and I was so grateful for that. I remember before he passed just looking at him and wishing with all my heart for one more lucid conversation. I wanted to hear his voice one more time and tell him some things I hadn’t. Say everything you can now before he goes wherever they go. I still spoke to him thinking and hoping he could still hear me but was just not able to respond. I hope this helps. My heart is broken for you and your family.

    Jean

  2. It is not as dramatic as it seems to be, they got meds and morphine so there is no pain. They sleep a lot. Mom was really confused the last weeks and it was hard to carry on a conversation. Suddenly she lost consciousness and it was just a matter of hours until her body gave out. I wasn’t there to witness it because I was tired and Granny had settled at her side for the night, but she explained how it was going to happen as she saw it too many times before. Some of the breaths they take are deeper than others and with one of those deep breaths comes the end, there will not be another breath. It’s quiet and peaceful.

    Thinking of you!

  3. I have cried as I have read all of your posts!! I feel like I am living in your exact shoes right now! My dad was dx with a frontal lobe gbm grade 4 tumor on October 2011. He was having difficulties expressing himself and horrific headache. He was, at the time, superintendent of a public school district where I also teach. He had an awake craniotomy a week later and went through chemo and radiation. On January 29, 2012 the school district dedicated and named the newly built administration building after my dad. He also celebrated his 65 birthday and retirement in the education business for 42 years! He gave a speech that he had written and memorized beautifully. A new tumor appeared in may, 2012 and was surgically removed. But!, you can’t continue to remove chunks of the brain without there being side effects. His speech was severely affected and lost. He is currently taking Avastin and chemo but we have seen a drastic decline in my Dads health since Thanksgiving. He has had two seizures. He sleeps a lot!! My mom says about 90% of the time. We go back for an MRI on January 17 but the oncologist suggested to my mom that treatments maybe stopped due to dads decline.
    He did come watch my 14 year olds basketball game on yesterday but it wiped him out!!!
    I will check back on your blog to check on your dad and will pray for your family. Please do the same for mine!!!

    Ashley……in Texas

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