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Please, God, help me be strong until the end

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

I cry so much. My heart is so broken all the time. All these years (3 1/2 of them) I fought so hard and I amazed everyone I knew with my strength, with my fight fight fight, believe we could win attitude. Now I'm just so weak that I can't talk to anyone without crying. I go in David's room every two hours and change his position and when I come out, I break down and cry. Every time. He's so helpless, so weak. But he still has clarity in his eyes. He recognizes us and his eyes follow us around the room. He never talks, never nods, never acknowledges what we say. But he did have a look of interest in his eyes when we told him that his sister got her first iPhone. How he loved his iPhone.....

I thought that things might get better, or at least stabilize, when David tested negative for c-diff. But the diarrhea didn't stop. The wounds from the diarrhea continued to get worse. I called hospice in desperation...why was David's food shooting back out of him? They thought maybe he has "dumping syndrome." I was so upset that they hadn't told me that tube fed people sometimes cannot tolerate tube feeding unless it is done really, really slowly, not with bolus feedings. So we switched to gravity bags. That allowed the food to trickle in super slowly. But the diarrhea still didn't stop. In the middle of the night, when I couldn't sleep, I remembered that when we were in the hospital, the palliative care doctor had told me that a feeding tube might not solve the issue we have with David not swallowing. She said a feeding tube is not a magical fix. She said that some people just do not tolerate tube feeding. So the next morning I called her and we had a long talk. She told me that when the end draws near, people stop eating. Their metabolism changes and they start burning muscle instead of what they are eating. That's why hospice always measures "wasting" to see if that metabolic shift has begun. The palliative care dr said that there's no way to stop that change, and it won't matter how many calories I pump into David. In fact, I am making it way harder on him. If he could talk or communicate or if he had any control, he would just stop eating. But since he's totally immobile, totally helpless, and he can't talk or even shake or nod his head, I have been pumping food in his stomach, making him bloated and uncomfortable and causing that diarrhea. And she explained that when you go without food, after a few days, the body has a natural response---a sense of euphoria. It's the body's way of making dying easier. But I am circumventing this for David by feeding him.

This has caused such an incredible conflict in my heart. I have always been absolutely adamant that I would not stand by and watch David starve to death. But if forcing food on him makes his death harder, am I doing the right thing? Is it right to force food on him and try to make him live a few weeks longer in such a miserable, terrible state? I don't know.....for now, we are holding food and only giving him water and his medicines. Trying to let his gut recover and settle down. After about five days, we are going to try to give him tiny increments of food and see if he can tolerate formula given gradually with the gravity feeding bags.

David's status is worsening daily. His cousin who is a caregiver said that he has drastically gone downhill in just the last week. She is usually so optimistic that when she says that, I sit up and take notice. I think that it has contributed to my constant tears. It's hard for me to keep time frames straight. A day seems so long, and it seems like months ago that we were in the hospital but it's only been a few weeks.

I want to thank all of you who posted on my last thread. Thank you so much for making me feel like I am not alone. I am so grateful for your understanding and your support. Your notes mean so much to me.

Love and blessings, always,
Cindy

dasspears
Posts: 233
Joined: Feb 2009

Hi Cindy:

My sister-in-law passed away June 24th after being diagnosed with GBM in Nov 2011. My brother-in-law was at the same crossroad you are now. He is a doctor and he chose not to do a feeding tube because he knew that would delay the dying process. In her final days, Mary was in that euphoric state - she was calm and she was ready. My BIl described it as peaceful. I hope this helps some - you, David and your family are in my thoughts.

Peace to you.
Debra

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Cindy,
You have the right to cry, watching your child suffer is so heartwrenching, you need some relief from the pain in your heart. I have been with many family members and a few friends who were where David is now. Yes, it does seem cruel to withold nourishment from David, but just think how you feel when you are ill and don't want to eat or drink, now multiply that by 100. My friend Charlotte, said, " Food was what caused her to suffer physically, didn't make any difference if it
was solids or liquids." David knows you are taking excellent care, and making choices that he could no longer make on his own. He does love you and your family for all the care and loving support he is getting, even though he can not express it.
Cindy, have you got people who can relieve you for a few hours each day- you need a break
to regroup and be there for David and your family. Have you been taking your walks or ridden your horse lately- you could go for a ride, and then tell David all about what the outdoors was like. Patients worry more about the caregivers than themselves. It sure would be nice, if the day we are born that we came with an owners manual- to guide us through life.
Please know that the lord never gives us more than we can handle. Prayers for you and your family for strength and courage to meet each new day.

(((HUGS)))

Carol

here4lfe
Posts: 294
Joined: Jan 2010

This is the hardest, but most precious expression of Love.

Best

Noellesmom
Posts: 1297
Joined: Aug 2010

Cindy, I cannot imagine how hard this is for you. Even reading your words is painful.

Praying for an easy, sweet release for David when the time comes.

ketziah35
Posts: 1147
Joined: Jun 2010

To say I am sorry doesn't seem enough. I do not know you nor have I exchanged greetings on the boards, but I offer you my sincerest prayers for strength for you, your son and your family.

God bless.

Ketz

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

Cyber hugs and prayers.

sadinholland
Posts: 229
Joined: Apr 2011

Cindy,

This is so heartbreaking. Continue to pray for strength and guidance. Ask God to give you the answers on what should be the next step in Davids care and ask Him for strength to follow through whatever the answer may be. You are going through a very difficult time and difficult decisions have to be made. I was listening to Joel Olsteen and he said sometimes we pray and we feel that God isn't answering our prayers but during this time God is making us stronger and He wants us to understand that He is making us stronger when we go through trails and tribulations. It helps us to become higher and all that God wants us to be. He stated as we grow and allow God to mold us, the seeds of greatness will flourish. He talked about how we pray and pray and it just seems like the more we pray the more things don't go as we feel they should. But he said we are being tested. It is during those times that God wants us to grow and deal with whatever comes our way. And when we pass His test, we will receive the victor's crown of life. I know you are a believer, lean on the Lord during this very difficult time. I can imagine that you feel like you can't hold on much longer but God will see you through. Let your loved ones see how much you are hurting so they can comfort you in the way you need to be comforted. You don't have to try to be strong in front of everyone. We here on this board will continue to be here for you and we are there for you in spirit. God bless you Cindy. I pray for healing, peace and strength for you and your family.

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

Cindy please know that we are all praying for you and David. I pray that he has a peaceful passing, and that God will give you the peace that you have done everything possible. You are a fighter! You helped him fight one of the hardest fights ever. He knows that you are doing everything in your power for him. Again, you are such a strong, wonderful, loving Mother to a very wonderful young man. You were both blessed to have each other, even if it seems only for a short time. My heart is breaking for you, and you are in my thoughts and prayers constantly!

Love,

Michelle
Mobile, Al

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

The PEG tube is a very personal decision. I know that I or my sister would decline having a PEG unless it meant it was temporary. If I could not have chemotherapy anymore (or any other treatment specifically for brain cancer) then I would concentrate on making my life pain free. I guess I know too much and I see too many complications associated with aggressive treatment during the end of life.

Nothing can prepare us for what you are going through. It is horrendous disease. I wish the David that you described so many times was still with us. I wanted his scans to improve. I wanted him to beat this. I think of him every day. I am crushed and so desperately sad for you and him.

I will be with you until the end.

J.

sadinholland
Posts: 229
Joined: Apr 2011

You know Cindy when my husband was first diagonsed with his Anaplastic Oliodendroglioma grade 3,just as David had, I searched all over the internet for answers. Then I came across your post about your son. Immediately I was hooked on your post about your son. You gave me knowledge and insignt on this dreadful type of cancer. You gave me hope, you gave me understanding and compassion for all I was going through. You always had such kind words to say to EVERYONE here, such support you ALWAYS gave to everyone. You were so caring to us and always commented with care. You allowed us in your world with your son, sharing your joy, your pain, and all at the same time teaching us about what this cancer is. You have truly been an inspiration to me. You have helped me in my dealings with my husband in so many ways you, I am sure, aren't aware of. Thank you Cindy. You are not only a blessing to your son, you have been a blessing to me as well. Your post were there with encouraging words right when I needed them. God bless you!

cdolive4
Posts: 34
Joined: Sep 2011

Cindy,

I'm so grateful that you are still sharing your very sacred journey with David in such a personal, powerful way, which takes great courage but blesses countless lives. I try to check for your posts as often as possible, and I think of both of you many times every day. The difficulty of this road literally takes my breath away, and I'm thankful that we support one another during these overwhelming times.
You are in my heart, and I will hold you close forever - I promise. This has been a difficult summer for us as well - we have had 7 funerals (including my husband Dave's) this summer amongst our family and friends. 2 of the funerals have been for young adult children of friends I have known for 25 years - at times, the magnified pain seems too much to bear. I'm just grateful that I'm not alone in this - I know that God is with us, even when He feels far away, and I'm thankful for friends and family who are loving enough to walk the path with us for a time.
Sometimes, though, there are wonderful things which happen which help us remember that there is still joy in the world - and I'm thankful for those reminders. One of the most joyful of all possible events happened to me today - I became a grandmother. Our son and his wife had their baby, a little boy named Samuel David, at 4:24 this morning. The whole family is doing well, and we spent the day cuddling him, while he looked around at this world and listened to his parent's voices.
This day was especially tender because it marks 3 months since my Dave crossed the veil and continued his journey back to God. But now, rather than only remembering the sad events of 3 months ago, our family's lives have been transformed and we have rejoiced together. I'm confident that Dave was saying goodbye to Sam in heaven as we were saying hello to him on the earth.
My heart aches for you and for each of us as we struggle with these changes in our lives, and I don't have any magical answers which will take away your pain, but I do know that "weeping may endure for a night, but joy cometh in the morning. Feel free to borrow some of our joy as you serve David - we truly are in this together, and it's a blessing to be able to share both joy and sorrow. Wishing you love and peace, CindyO

Raani01
Posts: 68
Joined: Mar 2011

As I read through your post, memories of those last days of my husband keep com**** to me.At the end, I was struggling little bit about whether I should consider Feeding tube. It was an easy decision because he was sleeping all the time when he stopped eating.I would have insisted on if I felt he was alert as Davis is now. Cindy, you are such a caring mother and belive that what ever you are doing is what God wanted you to do. HE will make you to do the right thing. It is time for you to resist the feeling of what you wanted and always seek what David would want. That is what makes me comfortable today,after 2 months of jacob's passing. Sometimes I feel like I should have done something differnt and my boys will remind me we did what dad wanted (During the last year, Jacob lost interest in most of the things and didn't want to do any family activities. He just wanted to sit and relax and I was careful not to force him). Well, I miss him so much, but find comfort in knowing I did everything with good intention and lots of love. I can tell you, you will be comforted later for the pain you are going through now.
Withlove,
Raani

connsteele
Posts: 232
Joined: May 2011

My heart goes out to you and David, because we have been there. We also faced the dilemma of whether to start tube feeding our son. This was about two weeks before he passed, when swallowing became a problem. I asked our hospice nurse about tube feeding and she said that Hospice does not support that for end of life care. It was hard...the idea our son would spend his last days hungry was anguishing. But looking back, I think it was the best. I think he just wanted to rest undisturbed. He was peaceful during that time which is comforting. You have given 110% to caring for your David, and he is fortunate to have had such a devoted caretaker. Don't feel you are weak because you cry. Tears are the healing waters for those who are broken and weary.

Hugs and prayers for peace.
Connie
Mother of David
2/28/77-4/14/12

Tubbs
Posts: 51
Joined: Jul 2009

I am going through some of this with my wife now. She officially started hospice care on Sunday. Her oncologist recommended NOT giving her the feeding tube and I'm grateful that he wasn't insistant. She has a tumor on her brain stem which makes it hard for her to swallow, but she has small bites through the day. We've discovered she likes orange juice so she has that and small pieces of watermelon to start the day.

The hospice nurse came over today and said her vitals are good. I asked how long she thinks my wife has to live and she couldn't give an answer since she is still eating and drinking. Not much, but she's still somewhat capable of eating.

Now I'm worried that we put her on hospice care too early, but I'm sure most people second guess this. My wife is so miserable, and learned today that the radiation we hoped would help has not done much for her.

I hate to lose her, but I also hate seeing her live like this: dependent on others, unable to go to the bathroom by herself, bath herself and feed herself. It's really no way to live.

My prayer is that she goes painlessly and somewhat quickly, so her sadness and pride are taken care of in short order.

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Tubbs,

Hospice was there from my friend, Charlotte ate right up to the day she took her last breath. Her signs were limbs turning blue and feeling cold. Charlotte's breathing became totally labored when trying to rest, but fine when up. She also would sit-up and walk to bathroom under her own will power. She was one strong and determined woman. Hospice has no way of nowing how long each person lives, but they do no the signs of life fading. My prayers are for you to have the strength and courage to be there until the end, and that your wife remains pain free and responsive.

Take Care and God Bless!

Carol

connsteele
Posts: 232
Joined: May 2011

Tubbs...I too hope that your wife's last few days/weeks are peaceful. Our son was in hospice for a month. I've known others who had hospice for 6 months. I've read that the average length of time on hospice is just several days. That's too bad because hospice can free up the burden of caregiving and provide more time to spend just being with the patient. From what you've said, I think you made the right decision to go with hospice now.

I am so sorry for what you and your wife are going through. Peace and blessings,
Connie
Mother of David
dx medulloblastoma 1985, age 8
26 years remission
dx AA3 April 2011
Passed away 4/14/2012
Age 35

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Cindy and David,

Thinking of you all today. Hope you are having a comfortable and peaceful day! Prayers are being offered for strength, courage and comfort.

(((HUGS)))

Carol

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

Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

Thank you again, everyone, for your posts. I am so grateful.
Love and blessings, always,
Cindy

mom_in_CT
Posts: 19
Joined: Jun 2011

Cindy:

I wish that I had something to say to comfort you. I am so sorry for the nightmare that David, you, and your family is going through. I have been reading your posts since you first started, as well as David's blog. He is an amazing young man and you are an even more amazing mom. I feel like you and David are friends that I have known for a long time. I live on the east coast but wish that I could be there to help you if even in some small way.

My daughter is also 29 and has the same type of tumor as David. She had a second recurrence in January and has been on Avastin and Lomustine since then. So far things have been stable, but I am terrified to say the least.

With love,

debbie

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I continue to pray for your family. I'm glad to hear that the family is rallying around. This is a time when family is very important. Fay

ketziah35
Posts: 1147
Joined: Jun 2010

I am sending prayers your way!

Ketz

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

You and David are always in my thoughts and prayers. I too wish that I lived closer so that I could help in anyway possible. All of you on here seem like family, and I cry with you when I read your posts. This is an awful disease, but in the end if we don't beat it we will be in the best place ever! I would want my family to be as persistent as you have been even if it ever gets to where I am unable to respond or make my own decisions. I admire you for all the decisions you have made that you felt were right. Never second guess yourself because I know you are doing all of this out of a Mother's Love for her Son! God Bless you with peace and comfort through this time.

Michelle
Mobile, Al
DX: 10/20/09 AA3

sadinholland
Posts: 229
Joined: Apr 2011

Remember the Serenity Prayer. Not a day goes by that I don't think of you and David. God Bless! I am praying for you guys....

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

Hi Cindy:

I think of you and your son David all of the time. You are a wonderful, loving Mother. Whatever you chose to do for David will be the right one for him at the right time. My heart is hurting for you. I will be praying for your family's peace and for David's as well. God Bless you all Cindy.

Love, Edna

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I am sending you lots of love. Thank you for sharing. I always check if there are any news. You have done an amazing job of taking care of David. He could not be more love and more taken care of.

J.

cdolive4
Posts: 34
Joined: Sep 2011

Cindy,

Thank you for keeping us updated, especially when you have so many things to do right now. I just wanted you to know that you have impacted and are impacting many people's lives for good, as you love and serve David so fiercely and faithfully. I think each of us longs to be loved like that - so completely and totally, and you are such a good example of someone who loves with your whole heart - it's a blessing to each of us to be able to share in that love to a small degree.

I think of you and David constantly, and my heart aches for you - I wish we could be there to help you, but I'm thankful that your family is there for you as well. Sending much love and virtual hugs during this extremely tender time for you. CindyO

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

You are am amazing mother... Im so glad your family is there for you. You have been so supportive for so many of us on here. Thank you. I wish there was something that I could do for you. Prayers for you.
Brenda

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

You are an amazing mother... Im so glad your family is there for you. You have been so supportive for so many of us on here. Thank you. I wish there was something that I could do for you. Prayers for you.
Brenda

Cliff21060
Posts: 2
Joined: Dec 2012

You sound like a strong lady my prayers go out to you.

akellyd
Posts: 2
Joined: Feb 2011

Hi Cindy,
In googling this great world web about the type of tumor I was just diagnosed with I popped up with many listings of your replies. I am so sorry to hear about your sons passing. Oddly enough it sounds like we were on a very similar timeline. I was first diagnosed with a PXA tumor that had a successful resection in June of 2009 and didn't have one blip of change up until a routine MRI this November where regrowth of an anaplastic oligodendroglioma was discovered. I had had no symptoms the second time, and went into surgery expecting that it was the same thing I think. Don't really think I expected this sudden downfall of Grade III, or oddly enough that this could be fatal in a few years. Pretty sick of hearing doctors tell me they "Hope treatment is curative"
Apparently the two tumors are somehow related, I believe 'sister tumors' is how my oncologist described it. It was not expected anything would regrow, or even suggested after the first successful surgery that a different tumor could pop up. I had my second surgery a week ago and they think they got it all, and now all the appointments are piling up as radiation is planned and we wait for deletion status and so forth to hear whether or not chemo will be included. Had David had a different type of tumor prior to this one?
Guess I just wanted to say thank you for sharing your sons story on the web. Certainly touching and I wish it could have ended differently. If you could pass along any resources that might be helpful for me I would be appreciative, I am working with the neuro team at Kaiser in Redwood City, CA but have been trying to find as much research as possible on the stuff.
Feel free to e-mail me at Lexidavella@yahoo.com, would love to get a little more in depth if you are available (fully understand if you aren't)

Thanks,
Lexi

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

Hi, Lexi.

I would be happy to do anything or tell you about any resources that might possibly help you. I would feel glad if something we had experienced could be a help to you or to anyone who is battling brain cancer. Please feel free to ask me any questions that you want.

David only had anaplastic oligodendrogliomas. The first time, they said they removed 100% of all the visible tumor but they made it clear that there were microscopic cells left that had the potential to develop into tumors. David's MRIs were clear for two years, and then in July 2011 he had two grand mal seizures and that's when they found "disease progression." They removed approx 90% of the second (anaplastic oligodendroglioma) tumor.

I don't think it's really common to develop another type of tumor but I have read of it happening several times here on csn. And I read on one of David's last MRIs that they found mixed tumor type cells...oligoastocytoma or possibly GBM. It was near the end and I did not want to see the MRI and I didn't even fully read the MRI report. I just couldn't bear to read that his tumors had progressed and had possibly changed to an even more dangerous form.

I will share a few things from our experience (our little pool-"puddle"--of wisdom) that you may already know....I hope it will help.

It's good that you were able to have two surgeries and have the tumor removed. The more they can get out, the better.

Radiation was hard---it made David very tired and weak--but he recovered and afterwards, you would never have even guessed that he'd been sick for even a day. He also took Temodar during radiation and afterwards. Temodar made David terribly constipated, tired, and he had "chemo brain"--short term memory loss mostly--but it was manageable. He took Ritalin when he took Temodar and it helped him to remember and keep focused. He worked part time for Apple, went to college (university level) lived alone, worked out at the gym, rode his mountain bike, played basketball, golfed, and hung out with friends and family. In short, went back to his regular life. He tired easier, but in the overall scope of things, not a big deal at all. This was after radiation and while he was doing Temodar. During radiation, he lived with us and he took it easy...he didn't do much for the last two weeks of radiation and for several weeks after radiation.

We sought out two more opinions after the original diagnosis and treatment plan. Our oncologist had said that he recommended chemo and radiation because David did not have the gene deletions. The second doctor said to do just radiation or just temodar in case of a recurrence. If we only used one treatment, we could use the other one if/when David had a recurrence. The third opinion agreed with the first doctor. David had said from day one that he wanted to fight as hard and as aggressively as possible, right from the start, so he did both treatments. I felt it was the right choice. I think it gave him two cancer-free, good years.

Here are two websites that can help you find clinical trials:

http://www.clinicaltrials.gov

http://www.cancer.gov/clinicaltrials/search

We went to NIH (National Institutes of Health) in Maryland. The clinical that David tried did not help him. But NIH was wonderful. They are super organized and have everything all together. They paid for all of our flights and got subsidized hotel rates for us. They arranged for bus and taxi transportation and even gave us each a $15 a day food allowance. I so wish that their clinical trial would have bought more time for David but it was not to be, I guess.

Our doctor at Oregon Health Sciences University pioneered a treatment protocol called the "Blood Brain Barrier Program." I think it's a little controversial. Our insurance would not approve it...they said it was a clinical. Finally after we had been to NIH and came back, Medicare agreed to the BBB. The treatment was too much for David...the side effects were brutal...but it drastically reduced the tumor mass. You can see the before and after pictures of his MRIs in my "expressions area here on csn. David had to discontinue the BBB because he developed blood clots, abcesses, blood infections, e-coli, heart block, and had several severe seizures. He never regained enough ground to tolerate another BBB treatment. He only had two. I just met a woman at a cancer support group who did the BBB 17 years ago for a tumor on her pineal gland and on her spine. She was able to do all 12 treatments. (one year's worth) She hasn't had any brain tumors since. However, she said she now has colon cancer from the radiation that they did on her spine. But she looks good, is living independently, and has only a few other after-effects from her battle with the pineal tumor. I would be thrilled beyond words if David had done as well.

Our oncologist at OHSU is Dr. Edward Neuwelt and the protocol is called the Blood Brain Barrier Program. Here's their website:

http://www.ohsu.edu/xd/research/centers-institutes/neurology/blood-brain-barrier//

I hope that these few notes may give you a couple more options to explore. Please let me know if you have any questions. I'd love to be of any help that I can be.

You may want to start a new thread here on csn and ask about clinical trials and treatment protocols that others have used for anaplastic oligodendrogliomas. Having a thread that is dedicated to asking for help with trails and protocols may provide some ideas from other posters on csn.

Please keep us updated on your treatment and progress. I especially would like to know about whether or not you have the deletions, and how radiation goes for you.

Love and blessings and healing to you,
Cindy in Salem, OR

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