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big dip in our roller coaster of a life

cindysuetoyou's picture
cindysuetoyou
Posts: 513
Joined: Dec 2009

We have had a pretty big change in David's condition. He had multiple seizures last night....8 of them in about a 3-4 hour period. They were not clonic tonic ones but they were still very upsetting and they took a lot out of David. We went by ambulance to Salem's ER, and from there, they took David up to OSHU's NSICU (neurosciences intensive care unit). They were afraid that the seizures were going to escalate to a point that David would need to be entubated, so that's why we were in NSICU. The thought of the seizures progressing to a point where David would need to be entubated makes my blood run cold....

They did a CT in Salem and it showed disease progression, edema, and increased mass effect. Devastating news. When David talks, he is cognizant and aware, but he's not talking very much...only answering questions put to him point-blank. He's doing odd behaviors....tapping, flushing the toilet over and over and over again, taking 5 minutes to butter and rebutter and butter his toast again. I ask him why he's doing that, and he says he doesn't know. The drs don't know either. It could be from swelling, meds, tumor...or a combination of all three. I suspect the combination.....plus he is absolutely exhausted. We didn't sleep much at all last night with the seizures and the hospital trips etc.

My concern (one out of a a million worries) is that the mass effect is now great enough that they won't be able to treat David with the BBBD. They did an MRI when we got to OHSU and said that the MRI would tell them much more than the CT, and they would know more about the extent of the mass effect, the tumor growth, the swelling, and if David could have treatments or not. They told us that they would let us know the MRI results tonight. They never came and told us a thing. I think that is very ominous. And they did another ultrasound, checking for blood clots, and they never gave me the results. But they left David's chart in his room and I read it and I'm pretty sure that they found more clots.

David's eyes look clear but he looks really tired. They increased his Keppra from 3,750 to 4,000 and his Gabapentin from 600 to 1,200. They also really ramped up the dexamethasone. I don't remember the exact dosage but he was only taking 2 mg a day and now he's taking more than that....every six hours. I hope it helps with the swelling. I think the swelling is responsible for the odd behaviors. It's like the stuff he was doing when he had all that swelling after the BBBD treatment. He's not nearly that sick, though. And the NO team member that saw David was very impressed at how much better he looks and acts since the last time he saw him when David was discharged after the abscess/infection/hospital stay last month.

Well, that's where we are at. I am trying not to panic but of course I am deeply concerned and very,very worried. I am going to have a long hard night, wondering about that MRI.

Please pray for David. I am praying for everyone on this site too.

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

Cindy and David, my heart sank when I read your post. I truly know how you feel. I wish there were words that I can say that would make it better....all I can say is that I am thinking of you and David and praying that this will pass. You all have been such fighters. You must be exhausted, so when you feel up to it, please let us know how things are going.
Connie

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

This post broke my heart! Cindy you are such a strong woman and awesome Mother!! I am sending prayers your way, and wish there were words to comfort you. David is a fighter, and he has proven that over and over! You have a very special young man, and I am praying he can fight through this as well.

Please keep us informed, and know we are here when needed!!

Michelle
Mobile, Al

tmfaubus
Posts: 23
Joined: Jan 2012

It could also be the dexamethasone. When my dosage was high I was almost delusional.

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

My heart goes out to you....Im sending you a warm hug and lots of prayers your way today

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Cindy,

Sending strength and hugs to David and you.

Much love,
Leslie

cindysuetoyou's picture
cindysuetoyou
Posts: 513
Joined: Dec 2009

Thank you, connsteele, tmfaubus, Michelle, 4theloveofmysis and Leslie. I appreciate your posts and concern and prayers.

The oncology team came in this am and told us what I feared they would say....there is "significant progression" and the mass effect is now too great to risk another BBBD or even an intra-arterial chemo treatment. We are waiting to be cleared by infectious disease and neurology (for the seizures) for an IV chemo treatment. I asked Dr. N if David could have a BBBD or even an IA next month month and he hesitated and said, "Let's see how he does." I'm scared.

Dr. N also is going to start David on Avastin.

The neurology team said that they see behaviors like David's...they call them "neurological deficits" and the neurology team said it's from the tumors. David is getting "stuck" again and it's like he's fixated on things....like the bidet flush in his room's toilet. He will flush it over and over and over until I gently talk him out of leaving the bathroom. He turns the lights on and off and I don't know if he'd stop on his own. I have to distract him or gently take his hand and lead him out. He does a lot of things like that. It's absolutely heartbreaking. He is totally aware and he realizes that he's "off." He's still pretty dang sharp as far as understanding stuff and having mental acuity.

He was way worse after the last BBBD and he recovered from that. But I think that his problems back then were from swelling, and now they are from tumors. I asked Dr. N if he thought that (wimpy) IV chemo would even help David and he said "absolutely yes." He seemed very sure it would help. So my hope and my prayers and my longing is that the IV chemo will shrink things down enough that David will be able to tolerate another BBBD.

While I was writing this, my favorite dr from oncology came by. I went out in the hall and talked to him. He said that the MRI did not look good at all. I asked again if David could do a BBBD treatment in a month or two and he hesitated and said, "maybe." I don't think he thinks that David is going to be able to do another one. He said it's like a chess game. We didn't think we were going to win the game---we knew from the beginning that we were going to lose. We need to plan each individual move and work towards being in a stable place, but not play the game like we were going to win it. I said that it was probably a good analogy but I don't play chess. I don't mean anything by that...I just don't play chess. But....I don't want to think about playing the chess game of life for David without a "win" mentality. But what I want and what is going to happen are most likely not going to be the same thing.

David is depressed and really sad about all of this. It's hit him hard, and he didn't even hear my talk with the dr in the hall either. The expression in David's eyes....they are so sad and filled with regret and pain, and he looks deep in my eyes, like he is reading my mind, and I feel like I am dying inside. My heart and chest and stomach feel compressed, like someone is squeezing them. It's an actual physical pain. I am putting on a brave face and acting like I expect the IV chemo to help but I don't think David is buying it. I am trying to believe that it will help but it's hard to hold on to hope.

We are scheduled to have the IV chemo tomorrow and then go home. Then come back as an outpatient on Friday for the Avastin. We have to do Avastin outpatient because of insurance requirements. I hope we don't have some snag and delay in doing the chemo on the insurance end of things. I HATE our insurance company.

I'm still praying for a miracle and for David to beat this, or at least win this round. I won't quit hoping and praying until either he or I draw our last breath. And even though all of this is so bad and I don't want to do this, I don't want to be here, I don't want to know how bad David's situation is....I still trust God, no matter what the outcome is. I believe that there is more than just this life. Good thing, because right now this life sucks.

Not so positive these days, am I? I will pray and read the Bible and think on some positive things and I'll regain some hope and do better. Forgive me for venting like this. I can't say these things anywhere else. My whole family and especially David are counting on me to set a hopeful, fighting tone. If I don't, the time that we have left with David will be a terrible hard time, instead of a time where we can savor the sweetness of every moment we have with David. It's a huge responsibility. I hope I'm up to it. I have to be.

Love and blessings and peace to you all...and to me too.
Cindy---back in Portland, OR

I_Promise's picture
I_Promise
Posts: 213
Joined: Aug 2011

Your words are painful to read but I am glad you can share your life here on this site. David never deserved this; you don't deserve this. I think cancer is cruel and nonsensical. I am hoping against all odds that he takes a turn for the best.

all my love

Julia

sadinholland
Posts: 245
Joined: Apr 2011

Cindy,

I am so so sorry to hear the news about David. I can only imagine how you must feel, that's your child. You have such amazing strength. I only wish I could be as strong and courageous as you. I am glad you have this site to express yourself. Sounds like everyone counts on you to be the strong one. I am constantly thinking of you and David. I wish there was something I could do or say that would bring you a little comfort. My prayers are with David, you, and your.family.

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

My heart hurts for you and David. We are right there with you sitting there on the other side of your computer. You know that you can always vent here. I wish I knew just the right words to say, but I dont. This cancer is so unfair...Im praying for strengh for you and a miracle for David.

cdolive4
Posts: 34
Joined: Sep 2011

Oh Cindy, my heart goes out to you and David during this very challenging time. I just wanted you to remember this scripture 2 Kings 6:15-17 'they that be with us are more than they that be against us'. If you remember, Elisha was going into battle and they were surrounded by a whole host of men and chariots, and were very afraid. But Elisha prayed for them, and the Lord opened their eyes, and they saw that the mountain was full of horses and chariots of fire around them to protect them, and they were saved.
Cindy, you and David and your family, as well as each of us undergoing this terribly difficult journey ARE NOT ALONE. We are surrounded by friends and family, both seen and unseen, and the Lord has encompassed us in His arms as well - He will not, cannot leave you comfort less. This is a horrific roller coaster ride, but we are not left alone to deal with it. I pray for peace for you and your family, and for each of us who are struggling to find meaning in these challenging circumstances. I promise, you will not be left alone - the Lord loves you and He will walk with you and David through this difficult time. I pray that you will find peace and comfort while you are carrying this heavy burden. CindyO

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

I am so sorry that you got the news you were dreading to hear! I wish I could make a special trip to Oregon just to give you a hug. Like in the previous comment, Remember all of us here on this site is here for you to vent to. Keep on your strong front to your family, and find time to let it all out to us or even alone somewhere. We are all here for support and to lend an ear to when you need us. I fell asleep last night praying for everyone on this site and the heavy hearts that are on here. Cancer is an AWFUL disease, and I pray that there is a cure found soon. I will continue to pray for you and your family, and especially for your strength around your family. It is hard to feel you have to carry the burden, but you have proven time and again that you are a very strong woman! My deepest sympathy goes out to you during this time, and believe he will fight through this obstacle again.

Love and Prayers,

Michelle
Mobile, Al

Raani01
Posts: 70
Joined: Mar 2011

Cindy, I am very sad to learn what you and David are going through. I believe in the saying that we have very little control over what happen in our life, but we have so much power how to respond to it. You are such an inspiration for me to be strong and keep the fight to the end. As you know, Jacob is offered with repeated radiation as the last resort or no treatment at all. NO called with MRI result and said, there is tumor growth (which he expected), but no more blood prodcuts to worry about. Because of his bleeding issue, he won't recommend any kind of chemo. I struggled for an answer so he suggested to take a week and come up with an answer.Jacob is not really realizing what is going on.BTW,interestingly Jacob's behavior is similar to your David's like repeating the same thing and counting (NO mentioned some patients tap in this situation. Also, when I ask Jacob why he is doing like that, his response is "I am not sure").Luckily, his seizure is controlled. My family is praying to God to show us the right path for Jacob. I would like to try some alternate treatments ,if something make sense.I haven't heard any credible one yet.
Please find comfort in your faith and please know that you have many many friends caring for you, inlcuding me.
With love and prayers,
Raani

Jenny2008
Posts: 7
Joined: Sep 2011

Cindy:
I have read nearly all your posts and I am just torn up inside for you..truly. There are similarities in the journeys are boys are on; you are just a bit further down the road. I feel already how you feel and I cry so much. I sometimes wonder why I read the posts that are so painful and I think that it's akin to a strength in numbers kind of thing. It's like, "if Cindy can do this, so can I when I am faced with this" with my child. My worst fear is breaking down in front of my son...I so fear not being able to do what you are doing so well...I am in awe of you and just send strength and hope and comfort.
I no longer have horses and can totally understand how wonderful it has been for you to ride up in the mountains to recharge. I guess I am just writing to express my gratitude to you for sharing these difficult times with strangers. Yours(and David's) story is a gift to us all. Maybe all the ripples that are sent out to so many of us here in cyberspace is the ultimate lesson for us all...that we really ARE connected... If I am to believe that all things happen for a reason and for a lesson we need to learn, I believe, for me, as a woman who has needed to feel "in control", the stark realization that my son's disease and the progression of his disease is something over which I have little control may well be one of the things I need to experience.. Who can say. I have tried to help my boy by being "point man" in his treatment..just as have you..and I believe this has been just what my son has needs from me. By my reading, researching, fighting, pressing and asking questions ad more questions, it means my son can just be free to live his life and not worry like I do. I think our children are stronger than we think. Once, early on in my son's diagnosis, he said to me, "well, I'm not going to waste my life." When I lie in bed and cry for my son, it means I am not living in the present I read somewhere today that depression is living in the past and anxiety is living in the futuoe so we must live in the present..It is so hard but I think our sons do a much better job if it than we mothers do. I think that really is helping..I mention this because , though I don't know David, I just bet that he knows you are giving him the best and most loving gift that there is.
Sending hope and strength to your entire family
Jenny

falcon69
Posts: 25
Joined: Feb 2012

Dear Cindy,
I have been reading your posts ever since I became a member of this site but have never replied. I feel moved to reply to your last post as I cried when I read it. My heart goes out to you and prayers are going up for you. You are being such a great, strong mom for David as he has traveled this horribly tough road. We love our sons (and daughters) so much and want so much for them. It is so difficult to see them suffer. I totally understand your description of how you feel. Please know that Julie, in St. Louis, is praying for you and David and that God has you in His hands and turn your burden over to Him.

May God's peace be with you and comfort you.

Julie
mom of Scott, 31 years old
dx grade 2 oligodendroglioma/Dec. 2011
over 80% resected Dec.23,2011/no neurological deficits
monitoring w/MRI's every 3 months

sadinholland
Posts: 245
Joined: Apr 2011

I am so sorry to hear both Davids has had such major setbacks. My thoughts and prayers continue to be with you, David and your family as well as everyone else here. I pray for strength for you as well. Just remember, it may seem that you can't bear it, but as you know God doesn't put anymore on us than we can bear. After all, who would have thought we could bear what we have thus far. Joshua 1:9 be strong and of good courage, be not afraid neither be dismayed for the Lord thy God is with you wherever you may go. I may not post too often, mainly because I don't know what to say to bring comfort to so many of the people here that are going through so much. It breaks my heart. Just know I am thinking about each and everyone here and praying for you and your families constantly.

Our next appointment is next month. I am very nervous about it. Please continue to pray for us.

cindysuetoyou's picture
cindysuetoyou
Posts: 513
Joined: Dec 2009

We are busy, busy, busy here in the hospital with PT, etc but I wanted to post an update. I am cheating and copying and pasting my update from my FB page because I don't have much time.

I am so touched by all of your guys' comments. You are all so kind to me and you are all so amazingly unselfish to take the time to care about me and pray for me and David and to write to me, even in the midst of all the things you all are facing. I feel incredibly connected to all of you. I laid in bed late Wed. night, crying and praying for you. I named each one of you and your loved ones....I'm glad I prayed but it was overwhelming to think about how much each and every one of us is facing. I feel so weak...thanking God that He is strong enough for me.

I hope I can come back on here in the next few days and respond personally. Idk if I can because I am going to have my hands full with David's care. But I sure will try.

Here's my FB post. You know me....it's a mammoth one..

CINDY>>FACEBOOK>>
Yay I get to post some positive news. David is improving! It's up and down, but right now, the ups are longer and the downs are shorter. Yesterday and the day before, I was so concerned because he had some "behaviors" going on. Repetitive, purposeless stuff....I won't go into detail but I'm sure you can understand how that makes me feel. (This was before the chemo treatment yesterday.) The different doctor teams (the neurology team for seizures, the oncology team) said that the area in the brain that is being impacted controls the ability to formulate and carry out tasks, controls critical thinking, and emotions. All those areas were obviously being affected yesterday morning and the day before....maybe days before, since we were starting to get concerned before we even came to the hospital. They were pretty bad and very disturbing. I prayed and cried off and on for hours in the dark with my pillow and blanket over my head on Wednesday night/Thursday morning.

So David did the chemo yesterday afternoon, and they sedated him a lot. But after the sedation wore off, he wasn't talking and he was not very responsive. I thought he might be better this am, but he wasn't talking. I'd ask him simple questions and he would just look at me. Sometimes he wouldn't even look at me unless I took his face in my hands and turned his face towards me. And he still couldn't answer. Dr. N and his team came by early this am and said that maybe he should stay another day, just to be safe. But as the morning progressed and PT came by and worked with David, and he had breakfast, etc., he's really improved. I told David that it was important that he used his voice and talked out loud, not to just nod or shake his head. He said, "Okay." I asked if it was hard for him to talk and he said, "Yes." He is hoarse (I don't know why) and you can tell it takes a lot of effort to talk. But as today has progressed, he's gotten better and better. He's talking more often too.I have to initiate most of the conversation and it's just one sentence here, one sentence there, but that's okay! And the best part....he's even smiled at a few of my funnies! I can't tell you how happy it makes me to see him smile! It's like a warm glow in my heart that spreads out to my stomach and chest. And he's barely doing any of the repetitive behaviors. I told one of the oncology team members who came by later this morning about David's improvements and asked if it was from the steroids (but he's been on a higher dose since we were at Salem ER) and she said possibly, but it's much more likely that it's from the chemo. I asked if it could work that fast and she said yes. So I think that's a great sign!!!!

I should add that even though David does/was doing repetitive stuff, when he talks, he has total clarity and understanding. For example, the PT gal said to him, "What do you think about all the drama with the Blazers?" He replied, "Well, I think you stated it correctly---it's drama." And I said to him, "Thank you for letting me use your headphones. They are the most incredible, amazing ones I've ever had on my head." And he said, "Yeah---and you had them on backwards, by the way." And he smiled at me. He's sharp and has great mental clarity. I love him so much!!!! (It's true--I did have them on backward lol!)

Neurology came by and they said that they think they have the seizures under control...for now. But they said that David could seize at any time. They are totally unpredictable. Isn't that a lousy thing to have to think about? I hate it! And they said that with what is going on with David, he is highly likely to continue to have seizures, but we should not panic. Well, I don't panic, but I HATE them and I don't think I will ever get over the fear and dread and loathing and dismay and grief I feel when David has even a small one. I'm SO FRUSTRATED that I can't do anything or make the doctors do anything to make them stop. Just stop!!!! Am I just supposed to come to a place where "I accept what I cannot change"? I am not doing well with it at all in regards to seizures.

If we hadn't gone through that nightmare time with the 2nd BBBD in December, I'd be really crazy with worry right now. But David recovered from that treatment and those horrible aftereffects, so I totally believe that he can recover again. And he is NOWHERE NEAR as bad this time as he was that other time. (Forgive my lousy grammar!)

So it looks like we are on track to come home today, sometime later this afternoon or evening. David has another substantial recovery period ahead of him---he can't get up or walk unaided and he will need someone with him 24/7---but we can work that out. I think once he gets home, he will improve more rapidly. David's attitude is so wonderful...he's not cranky or mean or anything even remotely like that, even with the high steroid dose. And he is working so hard to do everything he can to recover. You can easily see how hard it is for him to talk. And it takes so much effort to get out of bed and stand....he shakes so hard that I can feel it through the bed when I lean my hand on it. Everything he does...walking to the bathroom, pulling paper towels out, washing his hands, lifting a fork to his mouth....it's all super hard work for him. I cannot imagine what it's like for him. He is really, truly my hero. When we get home, I am going to pour myself even more into doing anything we can to help him get better.

Thank you again for following David's ever-evolving situation and for reading my mammoth posts. Once again, I want to thank you all so much for your prayers and support and FB notes. It means so much to all of us. I read them to David too. Please keep praying because we have a huge battle ahead of us. We really need for this chemo to knock the tumors back--we need to gain a lot of lost ground.

Love and blessings,
Cindy

Thank you, too, my CSN friends. I love and appreciate you all very, very much. You guys understand like no one else....I am so grateful...

Love and blessings,
Cindy

Girl2010
Posts: 26
Joined: Jan 2011

My heart aches for you, but I cannot tell you what an amazing, strong mother you are. It's easy to see where David gets his positive attitude. At my brothers funeral our biggest topic was my brothers attitude- he never said why me.. Isn't it amazing that these people like your son a d my brother have such a positive attitude... Praying for you, and your son... And your husband and your daughters too!

cindysuetoyou's picture
cindysuetoyou
Posts: 513
Joined: Dec 2009

Thank you, girl2010. I think of you and your brother often. He had so much going against him with his rare genetic condition that made treatments not effective...and I remember your writing that the drs were still going to treat him because he was upset that they were not going to give him anything more.....your brother and my son---such fighters. If this battle could be won by sheer willpower and a positive fighting attitude....then they both would be cancer free. But it's not enough...

My heart is so heavy. So many people hurting and suffering...so many of them so young, with their whole lives ahead of them....I cry a lot these days.

Thank you for your thoughts and prayers. I hope that you and your family are able to heal and go forward in life.

Love and blessings,
Cindy

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

I am so glad to hear that David is improving! I got a kick out of the headphones you had in backwards! Loved to hear that!

Prayers,

Michelle
Mobile, Al

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

Hi Cindy-

I just want to let you know that I have been thinking of you and David. We have been including you both in our nightly prayers. I just want to tell you how much I admire your strength as a Mother. The love and strength you display is amazing. There is no greater pain then seeing your own child suffer. I wish I could find the words to say how I feel but I just can't. You are doing a great job of helping others by sharing your thoughts and it is very healthy for you too. I wish I had comforting words, but I am at a loss. I will continue to pray. I pray that God gives you peace during this time and eases David's suffering.
Love, Edna

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