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Made the hard decision, but we are at peace

connsteele
Posts: 232
Joined: May 2011

We have come to the place where we are going for quality over quantity.

Over the past week and a half, David has really declined. He no longer can support his weight enough to use the walker or even to stand for very long. Also, he has very little use of his right side, which corresponds to the side where the tumor is. His speech is also a lot worse...at times, he can barely talk over a whisper and it's a struggle to get even single syllable words out. However, this morning he is talking in longer phrases.
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>At first, we and his doc thought it might be extreme fatigue caused by the Avastin infusion a week ago last Thursday (Mar 1). But now, as things keep deteriorating, he thinks it is tumor progression. Dr.C also increased his steroid dose up to 12 mg, which is suppose to help with brain swelling, but so far we have not seen an improvement.
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>We have a transport chair to use in the house, to get him from the bed to the recliner to the table, etc. We also had a ramp installed for our front steps as he is dead weight, and both my and my husband's backs are feeling the strain.
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>After David's last MRI on 2/26, we knew that things weren't going to get better (the biggest tumor had more that doubled in size in two months, and several others had increased as well.) But the doc had hope for the Avastin, that he could have at least six months or maybe more. In talking with his nurse today, Dr. C thinks it's time for Hospice. So, we have made the call and getting the paperwork started as we really need some help here. We have no family in the area and our daughter flew back to Wyoming last week.

We requested that Dr. C (his NO) remain involved with his care, especially anythig to do neurologically, and he agreed.

On one hand it seems we have given up, but on the other, no. Dr. C that if we wanted, and David feelsl up to it, David could still go for his second Avastin infusion this Thursday. And have another MRI. However, Dr. C's opinion is that nothing new will come out of it. I want to try for the another round of the Avastin. I'm glad he is remaining flexible and letting us decide on these matters.

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>Other than a mild headache in the morning, which goes away with Tylenol, David is comfortable. No seizures. He spends his time in the recliner, playing his XBox. I am thankful that he still has enough fine motor with his left hand to use the controller.
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>This disease teaches us to be grateful for the little things in life.

Connie
m/o of David, age 34
dx 1985, medulloblastoma
dx 4-13-11, AA3,
Feb 2012, progressed to AA4.

tmfaubus
Posts: 23
Joined: Jan 2012

I know exactly where you're at. My MRI at the end of January showed avastin/carboplatin was not working anymore. I don't have it in me to take anymore chemo. Weakness, loss of ability to walk, etc have all set in. I continue to rise and enjoy each day as much as possible. That's all any of us can do anyhow I guess. Best wishes, Iam glad you are at peace.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I hate to here this news, but I will keep you in my prayers.

Michelle
Mobile, AL

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Connie:

I have been trying to think about what words I could say to you, but I never did come up with the right words to comfort you. I just feel so bad that you and David and the rest of your family have been dealing with this awful, awful diease. I will say an extra prayer that you do have peace and that the rest of your time together is a blessing. I have come to realize that every moment with our family members is a blessing. Please vent to us and pray and ask God to be with you and he will. He will be right in the room with you all. I pray that you feel his prescence. God Bless you Connie and David. Thank you for all of the advice you have shared with me and Sarah.

Edna

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

You are in my thoughts and prayers!

Michelle
Mobile, Al

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I think of you and your son offen. You and I joined this site close to the same time. I come back on here almost daily to check on you all. I know this pain all to well. Still trying to pull myself out of the darkness of this world of brain cancer. My prayers are with you and your son.

sadinholland
Posts: 231
Joined: Apr 2011

Connie,

I am so sorry for you and your son David. I think of you and your son often and you are in my prayers. Stay strong and hold on.....

sadinholland
Posts: 231
Joined: Apr 2011

Connie,

I am so sorry for you and your son David. I think of you and your son often and you are in my prayers. Stay strong and hold on.....

cdolive4
Posts: 34
Joined: Sep 2011

Connie, I have been following your journey here but have been unable to comment because my husband is recovering from his recent biopsy and virus injection, but I wanted to sign in and let you know that I'm thinking of you. I have learned a ton from you and Cindysue and I'm so thankful for the grace with which you have faced this terrible journey. I think about how long you and David have been battling this disease - since he was young - nd I'm awed by your endurance. I don't have any answers for you, other than to echo the same message I left Cindysue - I know we're not left alone during these very trying times - I believe with all of my heart that we are surrounded by angels as we walk through this life - but even more so when we walk through the valley of the shadow of death.
You're in my prayers, and I hope for peace and comfort for you and your family. CindyO

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Connie,

I have been holding off on posting to you. I wanted to have something of value to say to you but I never felt like I did. I have thought about you and David every single day, multiple times every day, ever since I stood out in the early morning rain and cried as I read about your David's MRI and what the doctors had told you. My heart is broken for you. I wept for you when I read that your daughter had to go back to Wyoming. I knew how much you would miss her. My daughter lives right next door to me and I do not know how I would manage without her. She's a little thing but she is so supportive to me and to David. David loves her special....they were always close, even as little kids growing up. This is breaking her heart too.....

I have known in my heart that my David and I are on the same road as you and your David. You are farther down that road, but we are not far behind. My tears are for both of us and for both of our Davids. I feel like my heart is being ripped out and I know you must feel the same way.

I think that sometimes I have come to grips with David's brain cancer but as I see him going downhill before my eyes, I am appalled at the level of grief I feel and how distraught I am inside. It's as fresh to me as the day he was diagnosed.

Maybe I am just a mess tonight because it's been a long day and David and I are both so tired. I do think that David's behaviors are worse when he is tired. Tonight, some of the times that I talked to him, he didn't even answer me unless I took his face in my hands and looked directly into his eyes and spoke simply. I notice now that the left side of his face is drooping like he had a small stroke. It's not real noticeable but it's definitely there. The doctors noticed it and said that's because the tumor is on his right side, and it is causing that droop. I refused to see it and said things like, "he's always had a crooked smile," and the doctors didn't say anything. I denied it because I didn't want to believe it. But I can't deny it any more.

My tears are dripping down my face and my shirt is all wet. David is asleep...or at least he is lying here with his eyes shut. I'm going to turn the lights off and cry for a long, long, long time.

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

Cindy, my heart goes out to you too. And please don't add to your burden, thinking that you must respond when you are feeling really tired and worn out (unless it helps you vent, then that's good, and vent away here!) I know that you mush be exhausted mentally and physically, and I pray that you will find a way to take care of yourself too.

It may seem a contradiction, but our going to Hospice is not a sign that we have given up. We are going to the James today for David's second Avastin infusion. We know that it is considered palliative, (and that he has majorly declined since his first infusion) but I have to try, even though both his NO and my husband think it won't make a difference. I have heard of several stories where Avastin had extended and provided some good quality of life for a time and I want to give it one more try...if we can squeeze in just a few months of good quality time, then it's worth it.

The help we are receiving through our county HOspice is incredible. It is a nonprofit and doesn't have an inpatient facility, everything is provided for the home, and I can't tell you how much help they've been, especially since we don't have family in the area to help. David is not at the point of needing inpatient anyway. And having all this help ...personal aide, PT, assigned nurse and others on call 24/7, social worker, chaplain, even a lift chair and meds and supplies are furnished at no cost to us.. helps us feel not so alone in all of this. And I do think we might have a faster response time to calls then going through our NO (who is 70 miles away in Columbus)and his answering service.

So, like I said, we are at peace with our decision. We haven't given up hope that our David still has some quality living to do and we're going to do everything we can to help it happen.

Love and prayers to you Cindy and your David. It's a rough road and like the old hymn says, I believe we'll understand it, by and by.

connie

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Love and Prayers,

You and Cindy are both inspirations to me! I follow both of your posts, and pray for you guys all the time. My heart is breaking for both of you as well as both Davids. I am fighting cancer myself, but I know how it feels to be the family member grieving the what ifs and stressing about what is to come. I lost my Mother to GBM IV when I was 7, so I was not really as knowledgeable about it at that time. Then 7 years ago, just 5 years before I was diagnosed my Best Friend was diagnosed with GBM IV in July, and lived exactly 6 months. Watching her was like having flashbacks with my Mom. My friend's was very aggressive, and they could not find anything to slow her's down. She would have surgery, and it would be back as big if not bigger than before the surgery. At least both of the Davids as well as myself have had positive help from some of the treatments that have allowed us more time, and who knows, we may have more time than even the Dr's can explain! As soon as I was diagnosed I automatically assumed it was a death sentence, but I have learned through this site, and by personal experience that I have to fight with all I have. Dr's have statistics only, and like you said even if the Avastin only gives you a little more quality time, at least it is more time! I hate to know that my family is feeling this way about me as well, but I try to stay strong for them and this site helps me with my fears. I am glad I get to go on this journey with all of you, to be here to help by listening, or have someone to listen if I need them. All of you are in my thoughts and prayers!

Michelle
Mobile, Al

stacy0611's picture
stacy0611
Posts: 14
Joined: Feb 2012

It's a hard place to find sometime, but having peace with the decisions we must make, can be very comforting. Thank you for fighting so long and so hard. You are an inspiration to all of us with Brain Cancer, both David as a patient and you as a caregiver. May you remain in peace and comfort. -- Thoughts and prayers,Stacy

Raani01
Posts: 68
Joined: Mar 2011

Connie, I am not sure how to comfort you other than I think about your pain as a mother while I fight to have my husband with me at least for one more year (he promised me he would take care of me while I get old and sick!)

NO called yesterday and said radiaton or no treatment for Jacob. Tumor has grown little bit in the monday MRI.He said if we let tumor grow, Jacob's symptoms will get worse, If we do radiation inthe hope of stabilizing the tumor, the treatment will make his symptoms worse also. And going through 4weeks of radiation will get us 2 months extra if everyhting goes as we hoping for. I am praying with our kids to God to show us the right path. As you said, My comfort is in the knowing that I do and I will do everyhting in my power. I am still looking for options. Extended family members are already talking like "why more treatment".The thought of letting the tumor grow without any treatment is breaking my heart.I am not ready to accept the reality everybody is whispering around me and I am not giving up.

I think about you all the time,
Take care Connie,
Raani

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Raini

You and your family are in my prayers!

Michelle
Mobile, Al

connsteele
Posts: 232
Joined: May 2011

Raani, I know what you mean about not being ready to accept stopping all treatment...it makes you feel like you are letting go too soon... that somehow you are shirking your duty as a caregiver.

I feel that way too. David had his second Avastin today, which was something we wanted. His NO felt that it wouldn't make a difference but if we wanted to go ahead, that was fine. His NO also said that if we wanted, he would add Irinotecan to this second infusion but he didn't think that it would make a difference. So, we said no because Irinotecan can cause severe diaherra. I don't want to take that chance because if that were to happen, it would negatively impact David's quality of life (he can't use the bathroom on his own).

His NO was ready to completely handover his care to the Hospice doctor, but only if we wanted. I'm not ready for that because I don't want to give up on the Avastin yet. Before I can completely accept the idea of stopping all treatment, I want to get one more MRI, which I have requested, along with an appointment with the NO, for Mar. 26. I figure that if the Avastin is going to do anything, it should be evident by then. The nurse said a lot of patients want a final MRI before going to Hospice, even if the NO thinks it's not necessary, that it gives one a sense of closure.

As for your situation, it's a tough call. Have you and Jacob ever discussed about what kind of measures he would want to endure, and for how long? Do you have a sense as to what he would want? That has to be hard to determine when you have family members putting pressure on you to stop treatment all together.

All I can say is, what does your heart and your gut tell you? Is there unfinished business that having another two months would resolve, even if those months are poor quality? Or, when it's all said and done, and you lose Jacob, which scenario will cause the greatest regret?

These are tough questions. Is there someone you (and only you, not with other family members,since you are the one bearing the major responsibility) can talk to? A pastor? Our county Hospice has a free chaplaincy service...one does not have to be in Hospice to talk with one. Does your county offer a similar service?

And last of all, have you sought a second opinion? I understand that some places, like MD Anderson or Duke will give you a second opinion over the phone, once they've received medical records by fax and CDs of his latest scans. You could start by going to their websites for a main number, and go from there.

All the best to you and Jacob. You too are in my thoughts and prayers.
Hugs, Connie

connsteele
Posts: 232
Joined: May 2011

Raani, I know what you mean about not being ready to accept stopping all treatment...it makes you feel like you are letting go too soon... that somehow you are shirking your duty as a caregiver.

I feel that way too. David had his second Avastin today, which was something we wanted. His NO felt that it wouldn't make a difference but if we wanted to go ahead, that was fine. His NO also said that if we wanted, he would add Irinotecan to this second infusion but he didn't think that it would make a difference. So, we said no because Irinotecan can cause severe diaherra. I don't want to take that chance because if that were to happen, it would negatively impact David's quality of life (he can't use the bathroom on his own).

His NO was ready to completely handover his care to the Hospice doctor, but only if we wanted. I'm not ready for that because I don't want to give up on the Avastin yet. Before I can completely accept the idea of stopping all treatment, I want to get one more MRI, which I have requested, along with an appointment with the NO, for Mar. 26. I figure that if the Avastin is going to do anything, it should be evident by then. The nurse said a lot of patients want a final MRI before going to Hospice, even if the NO thinks it's not necessary, that it gives one a sense of closure.

As for your situation, it's a tough call. Have you and Jacob ever discussed about what kind of measures he would want to endure, and for how long? Do you have a sense as to what he would want? That has to be hard to determine when you have family members putting pressure on you to stop treatment all together.

All I can say is, what does your heart and your gut tell you? Is there unfinished business that having another two months would resolve, even if those months are poor quality? Or, when it's all said and done, and you lose Jacob, which scenario will cause the greatest regret?

These are tough questions. Is there someone you (and only you, not with other family members,since you are the one bearing the major responsibility) can talk to? A pastor? Our county Hospice has a free chaplaincy service...one does not have to be in Hospice to talk with one. Does your county offer a similar service?

And last of all, have you sought a second opinion? I understand that some places, like MD Anderson or Duke will give you a second opinion over the phone, once they've received medical records by fax and CDs of his latest scans. You could start by going to their websites for a main number, and go from there.

All the best to you and Jacob. You too are in my thoughts and prayers.
Hugs, Connie

Raani01
Posts: 68
Joined: Mar 2011

Connie,I wanted to let you know my thanks for taking time to write me. Eventhough all is so hard to accept, I see you are trying to help me, especially when you yourself are going through the hardest time for your David. I have decided to just pray and let couple of days go by ,believing in God,who will help me make the right decision in some way (still looking for alternate ways!).
Praying to keep you stron and in peace,
Raani

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