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Our ordeal...sorry it's so long....

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

I don't know where to start. We've had a long, horrible rough spell and I haven''t had the heart to write about it.…..well, here's what's been going on…

Tuesday 9/27
David had a second craniotomy. They removed a lot of tumor, some radiation necrosis, and a large cyst. They didn't get all of the tumor, but they felt they reduced the "mass effect" substantially and that the surgery should give David some relief from his headaches.

Tuesday evening--David had a seizure while in the neurosurgical intensive care unit. The drs told us this is not uncommon after surgery and they did not expect him to have any more seizures.

We had about one good week after surgery, then the headaches started back up. They are bad---on a scale of one to ten, they are eights and nines.

Monday 10/10
David had an excruciating headache and was rushed by ambulance to ER. They did a CAT and they didn't see any reason for the headaches. They doped David up a lot with Dilaudid and sent him home. The headache eventually lessened but didn't go away. David decided that even though he doesn't want to do it, it's becoming necessary for him to drop out of college. He is missing too many classes because he is either in the ER or going to different specialists' appointments. This was a very hard decision and it broke my heart and it really discouraged David. He so wanted to go to college……I still can barely write about it….I am so heartbroken and sad for him. He tried so hard….

Monday 10/17
Another terrible headache, another ambulance trip to ER, another CAT which once again showed no issues. But this time the neuro-oncologist ordered an MRI. After waiting for several hours, the ER doctor stuck his head in our room and said that the MRI showed tumor progression and that the neuro-oncology team was assembling to come and talk to us. This is barely 3 weeks out from brain surgery. I started sobbing and David hugged me and tried to comfort me and said, "You don't have to be sorry for me, Mom." My heart felt like it was being ripped from my chest. We waited another hour and a half….a horrible hour and a half….and then finally one of the resident oncologists came and talked to us and said that she didn't see any significant changes. I was so relieved but David was not sure. We talked and wondered why a trained team of radiologists would say there was tumor progression…..well, we found out on Wednesday that the resident was wrong…..

Wednesday 10/19
We went in for our scheduled appointment with our neuro-oncologist…the big dog. He said there is absolutely more tumor growth. In the three weeks since David's surgery, his tumors have doubled, maybe tripled in size. Spots that looked like a grain of rice now look like nickel-sized tumors. The doctor said that "this is rapid growth." We looked at the MRI pictures with all the blazing white spots and I felt like I was dying. David didn't say anything but he was deathly white and he had an indescribable look on his face….my heart twists in my chest when I think of his expression. It's HELL…..

Anyway, we discussed treatment options. The doctor said that because of how fast it is growing, we only have a small window of time to treat it with a special protocol called the Blood Brain Barrier Disrupter (BBBD) before it gets too big. This protocol causes some slight brain swelling and if the tumor is taking up too much space, then the swelling can be deadly.

Then during this appointment….we find out that David can't get treatment because….

Reason #1 Our insurance is denying this treatment again, not on the grounds that it's a clinical, but that it doesn't have a large success rate. It doesn't always help. There's no guarantees. And the patients end up dying, just not as soon. But it's David's best chance. The denial is a political issue. We are caught in a mess regarding the Oregon Health Plan….an offshoot of Obamacare or something, I don't know. I just know that there is a treatment that has the potential to help David and he is not able to get it because of a bureaucrat behind a desk that thinks he's not worth the money and the risk. I can't go there……

Reason #2 No room in the schedule. Patients are flying in from all over the country for this treatment, with hotels and plane reservations, hospital beds saved for them….so there's no time and no space for David to be treated. I think they would make room for him though, if the insurance approved the treatment….

Reason #3 Our doctor is going out of the country on Monday and will be gone until Nov. 3rd. He's the one who pioneered this treatment and he's the only one who can do it at OHSU.

I feel totally helpless and absolutely crazed by all of this.

I guess I need to explain the 3 treatment options that we have.....if we can get insurance approval.

One is conventional IV chemo….done on an outpatient basis. Just a regular IV drip. We don't want to do this one. David's tumors do not have the gene deletions and are more resistant to chemo, and his tumors are too aggressive--he needs more than conventional chemo.

Another option is intra-arterial chemo. An incision is made in the groin and a wire is threaded up thru the groin, all the way up to the aorta, as close to the brain as possible. Then a catheter is threaded up that wire and chemo is shot up that catheter. The chemo is delivered in 15 minutes but the procedure is a mini operation and takes about 4 hours. It requires a 3 day (minimum) hospital stay. The doctor says this delivery method amplifies the effect of the chemo by 10x.

The final option, the one that we really want, is the blood brain barrier disrupter. It's the same procedure as above, except a drug called mannitol is injected before the chemo, and it causes the cells lining the inside of the vessels leading to the brain to shrink and that allows the chemo to pass thru the blood brain barrier. This procedure is done thru both legs, on two consecutive days. I trequires a minimum 4 day hospital visit. This delivery method amplifies the effect of the chemo by 100x.

So our insurance denied the intra-aterial chemo too, not just the BBBD. But our doctor pulled off a miracle by calling the insurance company and he got them to rescind their denial for the intra-arterial chemo. The very next day, they made room and admitted David and did the intra-arterial chemo. They said that this will hopefully "cool things down" enough that David's tumor will not get too big for the BBBD treatment next month, if we can get insurance approval. Our doctor says he doesn't want to push too many buttons right now with the insurance company, but when he gets back in the country on 11/3, he will start working on getting the insurance company to allow us to do the BBBD for the next chemo treatment in 4 weeks. I do not know how I am going to survive the next 4 weeks, wondering if David will be approved for treatments. And he will have to get approval for any treatment before each and every treatment. And they want him to do these treatments for a year. I don't know how I am ever going to be able to deal with this kind of stress for a full year…..I guess I do not have a choice…..and if it's this hard for me, what must it be like for David?

David tolerated the intra-arterial chemo pretty well, except he was extremely nauseated and threw up for hours after the procedure until they finally sedated him into almost unconsciousness. He was in the hospital 3 days and I never left his side except to shower once and to use the bathroom.

Saturday 10/22
David came home from the hospital after the intra-arterial chemo. He was weak and tired and nauseated but so glad to be home.

Wednesday 10/26
David had a headache but tried to hold off on going to ER. I was in Salem (an hour away) at Wal-Mart with my daughter Christy and her two kids, and I got a text message from David that didn't make sense except I saw the word "seizure" and "ER." I immediately called him and he answered but he couldn't really talk and he didn't make sense. He sounded like he had had a stroke. We literally ran like crazy maniacs out of Walmart, dropped the kids off with Christy's husband, and drove to the ER in Portland, going over 90 mph the whole way.

David had walked to Starbucks for breakfast, and when he was outside leaving the store, he felt a seizure coming on. He tried to stay on his feet, but he fell against the wall and scraped up his face. Then he went totally down and totally seized. Before he lost consciousness, he said that people were running to him, people were stopping their cars and running to help him, putting blankets and their jackets under his head and under his body and over him….it makes me so, so very emotional. So many wonderful, kind, caring, total strangers in this world….I weep when I think about it.

When we got to the hospital, he kept asking about a Starbucks bag. We found it on a shelf in his ER room. It had a Portland Starbucks mug in it and a gift card. David managed to tell me that he had bought that for me right before he seized, because he knew I had wanted one and it was the last cup left. You could see on the outside of the bag the splash marks where he had spilled his coffee from the seizure. I will cherish that cup for the rest of my life. It is irreplaceable to me.

This time in the hospital, David didn't recover very fast. He could barely talk from the aftereffects of the seizure, but he said to me and Christy that he needed encouragement. He said that he wasn't going to make it to thirty, and what was the point in continuing to fight so hard when he just kept losing ground. He said he wondered if it was worth it to just live a few months longer like this….he never has talked like this before and it stunned me. I looked at his sister Christy---my baby, the person I'm the closest to on this Earth, who I also love with all of my heart….she was sitting at his head but back out of his field of vision, and her face was all twisted up and tears were pouring out of her eyes and down her face. I felt like I was dying and that I didn't have the strength to face this, but I held David's hand and I spoke in a calm, thoughtful tone of voice, and I told him that I can see why he'd feel that way, but that we needed to go back to one day at a time….that when he had his first surgery and radiation, it was rough, but things got so much better and that he needed to give this chemo a chance and that it could work and he could have more better days. He just laid there with his eyes closed and I don't know if I helped.

They came and did a bunch of tests, including an MRI. And finally a little good news. The MRI was stable…no changes from the previous one done a week ago when he got the intra-arterial chemo. We were so afraid that it was going to show even more growth…..

They finally got all the tests results back and they were all ok, so they let him go home. I think we got back to his apartment around 11 pm.

Today (10/28) the oncologist's office called me. I had asked if our favorite MRI reader could read the MRI that was done when we were in the ER, and let me know what he thought. He read it and agreed that it was stable…in fact, he felt that there was a slight reduction in the mass effect…that there had been some overall shrinkage. I AM THANKING GOD FOR THIS BIT OF GOOD NEWS. We really needed it. I asked if they think the chemo could have worked that fast and caused shrinkage, and they said absolutely yes. Oh, thank you, God!!!!

David had a pretty good day yesterday. His dad (my husband) went up to Portland and spend the evening with him. They got gourmet burgers and watched the World Series together. David had another good day today…no headache, and he walked a few miles, going to Starbucks, the bank, the pharmacy, and the grocery store. He was encouraged, but with some reservation, by the good report about the MRI. I think he's thinking…"let's wait and see….."

So…that's where we are today. I feel about 15 years older. But I am encouraged by hearing about some shrinkage and that David went two days without a headache and that he had two good days. Just taking it one day at a time….

Thank you to all of you who are thinking of us and praying for us. And thank you for reading this epic post. I really don't know how to do short posts….

Love and blessings, peace, comfort, and healing to you all….
Cindy in Salem, OR

Posts: 232
Joined: May 2011

I have been wondering how your son has been doing. This site is becoming like my virtual family, fellows-in-arms so to speak, who are joined together in a terrible battle.

I feel a strong connection to what you are going through: Not only is my son (age 34, dx inoperable AA3 on 4-13-11) also named David, I too have had to experience the same heartbreak of watching my son's world crumble when had to give up the live he had created in Virginia to move back home with us in Ohio.

Don't feel bad about your long posts. Reading your experiences provides more information about what may lie ahead for us.

For now, our David is stable, but he is not as mobile as yours. Our David has to use a walker and has limited fine motor and speech problems.

I will continue to uphold you all in my thoughts and prayers. Like all of those with brain tumors, our sons are amazing warriors, and no matter the outcome, their courage and inner strength will get them through whatever lies ahead.

palmyrafan's picture
Posts: 396
Joined: Mar 2011

That is wonderful news about David being able to get out and get around. He has been in my daily prayers and I'm glad that he has been able to enjoy some family time. It is also great news that there has been a bit of shrinkage of the mass. Praise the Lord!

Hang in there sweetheart! Let's hope and pray that David continues to improve and that the MRI and other tests are positive as well.


alutiiqmom's picture
Posts: 256
Joined: Jun 2011

Hi Cindy:

I am sending you all good thoughts and blessings for you and David and his sister. You sound like a pillar of strength. I am glad that you can be positive for David when it gets so rough for him. Keep pushing Mama. Pray and pray when it gets so hard. God Bless you all. I am very sorry for David's struggles and your pain.


Posts: 248
Joined: Apr 2011


I never feel like you have long post. Your post are very imformative and written with love and concern for your son. I am so concerned about your son and YOU and am glad you share with us here on this board. It is good for us to know what is going on with others in case our loved ones have the same thing happen to them. I can only imagine how you feel because while reading your post, I couldn't control my emotions. It is good news that the chemo is working. As you always say, hold on to the good that you hear and try to to worry too much about the negative parts of it. It is in God's hands. I pray for strength for you David and your whole family. I pray for healing, understanding, and for the insurance to approve whatever is necessary to make David better. We have to continue to trust in God and believe that no matter how things may seem, God has his hands in it and it's going to be alright!! Keep your head up and stay strong! God Bless!!

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

Im glad the MRI was stable. Im praying for David. Dont worry about the posts, we feel your love for David...

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Thank you, all of you, for responding to my lengthy post and for being so kind and supportive to me. I am so grateful for this site and for people like you who can totally relate to what David and I are going through. Thank you for being there and for taking the time to comment on my post.

I promise this will be a short post! I just wanted to let you guys know that David is doing much better. He has had four good days in a row. No more seizures, only a few random, manageable (with oxycodone) headaches, and a few little spells of nausea that anti-nausea medicine took care of. His doctor says that day 7 to day 10 after the chemo treatment will be his hardest days, and that's where he is right now. So I feel encouraged that this chemo may be more tolerable for him than I expected. He's fighting a nasty chest cold that I worry about going into pneumonia, but he felt good enough to go the movies with a group of friends tonight. Our lives are a crazy roller coaster of emotions....I never know what each day will hold. But today I am not complaining.....I am very, very grateful. I am thanking God for this good stretch, and I am daring to hope that we may be on the road to some better times....that this chemo is going to help and buy David some more time. I'm afraid that I come across as pitiful...but I am just so grateful for each and every good day, and I will take whatever I can get.

David and his friends went and saw a movie called "50/50." I love David's friends and they have been so good and supportive, but I wanted to kick them in the rear really hard for suggesting this movie. I read the reviews and I couldn't believe they were going to see it. It's a comedy/drama about a guy about David's age with cancer and all the heartache he goes through. He ends up having surgery and it saves his life. A different ending than the one the doctors predict for David. I warned David that I didn't think it was a good choice but he thought he could handle it. Afterwards he said it wasn't that funny, but he could relate to the heartless way the doctor told the guy that he had cancer. David also said that he felt kind of emotional a few times but that he was okay. I for one will never see that movie. That's the last thing I need. I'd probably make a scene in the theatre---bawling my head off or something. I only watch "America's Funniest Home Videos" or "Golden Girls." I used to watch "Law and Order" but I can't stand anything that has anything sad in it....

I'd better quit now before this ends up being another mammoth post...

Thank you again--and love and blessings to you!

Posts: 248
Joined: Apr 2011

So glad to hear he is feeling better and had some good days. I pray there are more of them to come. I had several people suggest that movie to us as well. I feel the same way you do. I couldn't quite understand why they would even think my husband and I would want to see it???????? It's good he's getting out and doing things with his friends. My husband does things with us, even when he's really tired and doesn't feel like it. He said it's better for him.

We all are dealing with the same thing, brain cancer. You are right, we can all relate to how you are feeling. That's the crazy thing about this cancer, you could be totally fine and suddenly, everything can change for the worse. I try not to think about what's ahead but I can't help it. I get so scared thinking about it. I am enjoying my husband now and thankful that things are going so well. But you just can't help but think that the more time that passes the less time he might have of those good days, especially when you have doctors reminding you of the prognosis.

My heart goes out to you and David. Being a mother of 2, I can't imagine having to deal with this with one of my chlidren. Stay strong in your faith and hang in there!!!!

I_Promise's picture
Posts: 218
Joined: Aug 2011

Dear Cindy,

How I wish that you did not have to suffer so much! You description of the events are so vivid, I feel like I am in HELL with you in the hospital. It is insane that not only we have to fight this monster we also have to fight the bureaucracy. I am relieved that the growth of the tumors are halted. Please keep us informed.



Anonymous user (not verified)

Cindy, I'm grateful to have you provide an update for us. I have been absent from the board because of some family events, but I have checked as often as I could for an update on David. I'm sorry that things have been so rough for you lately, but am grateful that things look stable for now. Thank you for sharing your journey and for the support you give everyone - it makes a huge difference. Peace and blessings to you and your family as well - CindyO

Posts: 14
Joined: Oct 2011

I just returned on Board, as I traveled to visit my sister, whose husband has ALS.
Anyways, I learn so much from your words, you're so informing, and knowledgeble, and this will all help me with John in a month, for his return to surgery.
I pray that you all are given the continued strength, and sense of purpose, ( David continuing to live life,-keep going for coffee, and get out in the fresh air, and you and daughter getting out, when you can. The temporary distractions do help,as it would seem so much easier to flop, and fold, and tune out. It just demonstrates your perseverance.
Know you ALL are in my prayers. Keep writing long, and keep us all educated a bit more!

Posts: 6
Joined: Nov 2011

Hi Cindy,

It is so so nice to read it at the end that things are getting better. The mass has reduced is such a relieving news.
Your story tells us all the importance of valuing each and every moment we are here on the earth and live it one moment at a time, fully.

Thank you and lots of love

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Today (11/3/11) David had a scheduled appointment with a seizure specialist. We saw him for the first time a week before David had his second craniotomy. At that time, he said that he wouldn't adjust David's Keppra level until after surgery.

At the first appointment, he spent about 20 minutes (at least) reading David's chart out loud to himself while we sat and waited. David was like, "Couldn't he have gone over my records and familiarized himself with my case before we came in?" I said that we needed to cut him some slack because he fit us into his schedule and probably didn't have time to do that. Well, today it was the same thing all over again. I mean...he started back from April 2009 and read the whole record to us in a monotone. And he made some simple mistakes....like he said he saw us on August 21...I corrected him. It was SEPTEMBER 21. Then he said, "And you are a 21 year old male." No, David is 28. You saw him on the 21st. >sigh< That kind of stuff does not inspire confidence in David. Then he talked about the latest MRI not looking good and I had to say the last one looked good...the one before was not good. Those comments stress David out and that makes me very unhappy. That's pretty much how the whole visit went. At the end, the dr said that David could increase his Keppra dosage now, or wait until the next seizure. Well, I thought that David should up the dose now, but he opted to wait. He hates the way Keppra makes him feel. He's taking 3,500 mg a day. The highest he would go would probably be 4,000. Scary to me....the seizure dr was encouraging though...he said that as the chemo shrinks the tumor, the seizures could very likely stop. That would be wonderful. I also liked that he said "as the chemo shrinks the tumor," not "if." But he's just the seizure doctor...tumors are not his specialty so he doesn't really know. But I'm glad he said it anyway.

So this doctor did all the neurological tests and I even noticed a few things. One was really odd to me. When David stuck his tongue out, he stuck it out a little to the right initially, then he straightened it. The doctor said that it's a definite "soft deficit." And he said that there was something about his eyes, the way they tracked to the side. A nyg....something. I will ask our neuro-oncologist because I don't know if I trust this doctor's evaluation about David's eyes. Some of these tests seem pretty subjective to me. We've had doctors in ER say they observe something, and then another doctor, the same day, saying that they didn't see it. But the tongue thing...I could see it. And David's sweet smile is definitely a little lopsided. David didn't say anything about these signs. They upset me a lot because this is really the first time that we've seen deficits that seem to be permanent. I kept my countenance impassive but it took a lot of effort.

On the other hand, some test he did on David's foot was "much improved." The seizure dr said that when he did that same test before David had the surgery and the chemo, he thought to himself, "This boy needs to have surgery IMMEDIATELY." I had no idea. I am glad that whatever was wrong appears to be better now.

David had a pretty decent week. A few headaches and some nausea, some gusher nosebleeds, but nothing major. And no more seizures since that one at Starbucks last week. His bloodwork today showed that his platelets are pretty low, though. They should be 180 to 400 and they are at 83. They don't like to see the platelets this low after only one chemo treatment, and they told David if he feels lightheaded, he should not assume it will pass. He needs to sit down immediately. And he needs to be careful if he handles anything sharp, like if he cuts veggies or whatever, because if he cuts himself, it's not going to clot and stop bleeding. I wonder if they will want to do a platelet transfusion or infusion or whatever they call it.

I'm trying to focus on how much better David is doing but I am having a hard time. I don't know what is wrong with me....maybe I'm on overload. I'm not sleeping at night and when I get up in the morning, I cry a lot. Earlier this week I was working on a simple timeline for David's seizures etc. and I was reading his records from OHSU. I have a copy of all of the notes from every visit, MRI, surgery, etc. I read the notes from the day they had us come in to OHSU in 2009 to give us the diagnosis that David had AO and had 3 to 5 years to live. They wrote the first impression: "Patient is a slim 25 year old male, in excellent health, outgoing, bright, cheerful, friendly." I read that and thought about that day...how brave David was, believing the best, hopeful, CHEERFUL...my poor baby, not having any idea that they were going to tell him....I can't even type it. The day that they told us was the worst day of my entire life. I feel like it was yesterday. I just threw myself down on my bed and wept so hard, for a long time. I never really got over that feeling this whole week. My poor husband and my family don't know what to say or do to help me. There really isn't any help...except from God. I've been praying for peace and strength. I feel really weak.

Anyway, Christy and I went to that appt. with David today and then got some lunch and we had a nice afternoon together. It's only 10:00 here in Oregon but I'm going to go to bed and maybe I'll sleep the whole night. I'm fighting not to have to take sleeping pills but I may need to relent.

I'm sorry to go on with my whiney little pity party. I know that a lot of you have much worse issues to deal with. I also know, though, that you know how I feel. What a nightmare we are all living....

Love, blessings, peace to all of you....and to me too....
Cindy in Salem, OR
PS three more things:
1) The seizure dr says that being a young healthy male, David's body metabolizes the Keppra fast and that's why he had that last seizure. Not because the tumor was bigger or anything like that.
2) David said wryly to me that he went to "Seizure Central" Starbucks. Amazing to me that he could joke about it. They gave him his food and coffee for free and told him how glad they all were to see him and that he's okay.
3) Sorry this is so long again!!!!!!

Posts: 248
Joined: Apr 2011

Oh Cindy it breaks my heart to read your post, what you and your very young son are going through. I really wish there was something I could say or do to make it all go away for you and your family. You are right about the tumor and the doc saing WHEN instead of if, that means they feel sure the chemo will work for David. My husband has never had a seizure. I am sure it is very scary. Even though the doc took up your time reading over David's records, at least you know he read them and familiarized himself with his case BEFORE he mad a decision as to what David should do. I too would have been annoyed with the errors, especially since he had all the info right there in front of him! Definately not a cofidence builder.

I don't understand the tongue and eye issues?????? Is this from the last surgery or because of the seizure? David is dealing with so much right now, as well as you. Of course you are crying and losing sleep. Here my husband is doing fine right now and I can't sleep because I am constantly worried about what MIGHT happen. The more time that passes, the more frightened I get. His doc constantly reminds us of the lifespan thing!!!! After reading your post, I feel so bad about MY worrying!!!! I have no right! You and David are going through so much right now, I pray for continued strength for you both and for a healing for David. Take care of yourself Cindy. If you have to take something for sleep, take it. You have to take care of yourself.

Love and blessing to you and your family as well

Posts: 55
Joined: Apr 2010

You are such an inspiring person, a wonderful mother and I will send good thoughts and prayers for your son David.
Salem is where my grandparents used to live, I visited in 94 and it was very nice. Please keep us updated when you can and get some rest!

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