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

2/4 Not much going on. David had some company pretty much all day. I think it wore him out.

2/5 I asked for everyone's understanding--David didn't want visitors today. He's really crabby and tired and still in a lot of pain. They started him on the antibiotic that would target the bacterial infection. Larry (my husband/David's dad) surprised us and came up early and had breakfast with us. David had to go to the bathroom and I kept opening the door and checking on him to make sure he was steady on his feet, didn't need help wiping, etc. He was short and crabby with me and said that what really annoyed him was that he couldn't go the the bathroom without my interrupting him every four minutes. I could have my feelings hurt but I know that he's sick of being sick. Sick of no privacy. Sick of everyone looking at his butt, being naked, having tests and shots and awakened every five minutes....

So Larry left and David took a long nap, from noon to 4:30. We were going to watch the Superbowl together. I brought Starbucks back to the room and David went to the bathroom. He was happy because they took out his IVs and he could go in the bathroom without that IV tree. He went in and I left the door open a crack and peeked and watched him sit down. It always takes a long time for him to go, so I sat down with my laptop and was writing a note to someone on CSN. I heard a funny noise and I jumped up and yanked the bathroom door open and David was on the floor of the bathroom in a full blown nightmare seizure. I cannot tell you how terrible it was to pull that bathroom door open and see him helpless on the floor thrashing and foaming and bleeding. I was beyond horrified and terrorized. I pulled the cord and a nurse asked what was wrong over an intercom. I screamed "Seizure!" The nurses and doctors came running in. They helped hold him on his side to keep his airway clear and they put a pillow under his head. I was holding his shoulder and his hip from behind to keep him on his side. He must have been seizing a while because he had a lot of blood and foam on his mouth. He was having trouble breathing again. The seizure started to abate and then ended and the doctor was asking him questions and David was answering. Then he started to turn his head to the side and I said "he's seizing again!" David started with the jerking of the head way over to one side, twitching his mouth, blinking his eyes really fast, then he started thrashing all his limbs with so much strength and foaming at the mouth. He could't breathe and he was making terrible sounds and his eyes were bulging out and his face was scarlet. They put an oxygen mask on his face but he wasn't drawing air in. The doctor called a code blue and I heard feet pounding in the hall. The seizure went on and on and I said out loud through my tears, "God! God, help him! Rescue him! Rescue me!" It was so hard to hold him on his side and the seizure would not stop. He started turning blue. A nurse ran in with a hypodermic and they had me come out of the bathroom where I had been holding his head up and the nurse took my spot and gave him a shot of Adevan (msp?) in his chest. I went out in the hall and started calling my family to come. After I called Christy and Larry, I went back outside of David's room in the hallway and I could see through the glass wall that they had taken him out of the bathroom and he was lying on the floor of his room, naked, and they were putting IVs in, calling out vitals...his heart was over 170....and they had a bag and were squeezing air into him...ventilating him? They put him on a stretcher and rushed him to ICU.

I was afraid his clots had come loose and he was having a pulmonary embolism, but the nurses said that it didn't look like an embolism. I asked if he'd had a stroke or a brain bleed and they said that it was possible and that they were taking him for a CAT as soon as they had him stabilized in ICU.

They did the CAT and no bleeding, no changes from the one done two weeks ago Monday, when he had those two seizures in his apartment.

David came out of the seizure several hours later. He was unresponsive on his left side but he could squeeze their hands on the right side. Several hours went by and then he was squeezing with both hands. The neurosurgeon said that the antibiotics that they gave David can lower the seizure threshold and they think that he had a seizure because of the antibiotic that they gave him. So needless to say, he's off that antibiotic and on another one. The infectious disease doctor feels terrible since she's the one who prescribed that antibiotic. But she was trying to treat the bacterial infection as aggressively as possible so they could clear it up and get David back on chemo. I told her that she did exactly what we had wanted her to do and that no one saw this coming. It's easy in hindsight to say that we shouldn't have used the antibiotic....but we are past that now.

So right now we are in ICU waiting for a room to open on a regular floor. David had an ultrasound to see how the clots are doing. We have't gotten those results back yet. I'm uptight because the hospital is full and David might have to go to a double room and they don't know if I can stay with him. I told them I would be staying if I had to stand in a corner and they said that they may not allow me to do that. I am not getting all hot and bothered and ugly because I think that David's medical team will work something out for us. They all feel terrible that we are going through so much. I look like I should be the one in ICU. My hair is sticking up from the way I slept on it in the ICU waiting area, and I have huge dark circles and bags under my bloodshot eyes. I look awful! And I could care less....

Christy stayed with me last night. She slept with me in the lobby of the ICU waiting area too. It's a bad setup because the elevators are right there, and the door to the ICU with an alarm on it is right there too. It must have awakened us 15 times last night.....

The medical team came by today to see David. The dr who called the code blue was with them. I thanked him for his prompt and efficient care and for calling a code blue and not wasting any time. I asked him how long David seized for and he said five to ten minutes...more like ten minutes. I've heard and read that a seizure longer than five minutes is considered life threatening.

Since David had those two bad seizures two weeks ago today, I'm not sure that just taking him off the antibiotics will prevent more seizures. How am I ever going to take an easy breath again in my life? How can David ever be left alone? How can we even dream of him living on his own in his apartment?

Still calling out to God....

Love and blessings,
Cindy in Salem, OR
David said he felt the seizure coming on and he sat/fell down in the bathroom on the shower's handicap chair. He said he tried to call me but I didn't hear him. He pitched forward on his face and didn't remember anything beyond that. He called me and I didn't hear him. I didn't hear him.......I can't forgive myself for not being there when he needed me.

Beckymarie
Posts: 358
Joined: Aug 2009

Cindy,
So sorry for everything you and David are going through. He has been through so much. My prayers are with David and your family.
Becky

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

They have to get these seizures under control! I am so so so so sorry Cindy! David, you, and your whole family should be able to celebrate the fact that this tumor is shrinking! Not dealing with complications after complications! I hate this disease! I will be following your posts closely. Please let us know what the neurologist team decide to do to prevent further seizures.

Love,

Julia

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

We met with the seizure doctor today. I felt like I didn't mince words and I asked hard questions. Like what are you doing to help us here? I think we need to see a different doctor. He came in our ICU room while David was under sedation today and said a bunch of stuff to us (me and Christy) and then he goes, "This is Webb, right?" Christy and I just looked at each other. Seriously? Anyway, this doctor said stuff like "you get used to seizures." What the....???? I said, "NOT ME. I'll NEVER get used to David having seizures. I don't want him to ever, ever, ever have another seizure, ever." He replied, "I guess I'm kind of casual because I've seen so many." I said, "Well, I'm not casual. And this is MY SON." (you moron) I asked him if David could die from a seizure and he said it's "conceivable." I wanted to know if I could keep a hypo of Ativan or something for emergencies, and he said no, but I could keep Versed in suppository form and I could use it if David had a seizure over five minutes long. How would I give him a suppository when he's thrashing around in a seizure? And it takes 5 to 15 minutes to work? I said David could be dead by the time it works. He agreed. I guess you can see why i think we need a second opinion. This guy is not really helping me here.

Anyway, we talked a loooong time and I asked him to pull up David's records and we went through David's whole seizure history and every Keppra dose change, and we looked at what else was going on when David had seizures. (Luckily I kept a little mini journal. I'm going to expand my note taking for that journal...it could become invaluable.) Christy picked up on a pattern. It seems like David has a seizure when he's been sick or had a nasty treatment. Like he had one 6 days after the IA chemo. He had one on 1/23 and the next day he started with the cellulitis issue. Another time he had a bad chest cold and he had a seizure then too. The seizure doctor is sure that David's e coli and bacteria infection alone could have caused a seizure. He told us that before we even noticed the pattern. And then on top of David being sick this time, he also took that antibiotic that lowered his seizure threshold.....the seizure dr said that even intense pain or an imbalance in potassium could have had triggered a seizure. When we came in on 1/23 because of those two seizures at David's apartment, David's electrolytes were off, and the dr said that could have triggered that seizure.

Now that we know all this...now what? How can we prevent all this factors/triggers from happening to David? I don't know. I can't stop every variable, like colds and infections and pain.....We are going to be talking with all of the treatment teams tomorrow. David was on Keppra and Dilantin after yesterday's seizures...then today a dr from Neurology said that the teams had talked and decided to take David off Dilantin and they switched him to Gabapentin. He said that Dilantin causes problems with long term use. I said, "Like.....how long down the road?" That dr said "Around ten years." Christy and I just looked at each other....does this dude even know that David has a brain tumor? Well, who knows what might happen...and it sure would be a shame to beat the tumor and then have something go wrong because you took an anti seizure med that you didn't HAVE to take....whatever.....all of this could drive me crazy.

We are still in ICU. David doesn't really need to be here but the whole hospital is filled to capacity and ICU is the only area that they have any empty beds. I guess I don't care.....we are being very well taken care of here. There's a chance that we might have to go to a double occupancy room....I didn't think they still had those...and I don't want David and I to have to share a room, so I'm happy in ICU.

David had an ultrasound earlier today to check on the clots in his leg and the preliminary read shows that they are still stable. That's good. And that huge hole from the abscess being drained is healing well. Better than expected, considering David is compromised from chemo. So we are taking baby steps.....but I think we are going in the right direction.

Julia, I totally agree that we HAVE to get the seizures under control. Do you have any ideas or suggestions? They are not planning on keeping David on Gabapentin after we get discharged. The seizure doctors thinks we should go back to his usual dose of Keppra. They are just using Gabapentin too, to help prevent seizures from the infections etc while he is in the hospital. He is taking 3,750 mg of Keppra a day. The seizure dr said that his Keppra levels in his blood look good. Well...yay. A lot of good those good levels are doing.....he said we could increase the Keppra if we want. Or we could keep David on the Gabapentin, along with the Keppra, after we leave the hospital. I asked him what he would do if it was his son, and he said he'd stay at the Keppra dose he is at now and not do the Gabapentin.....

Does anyone have any ideas, suggestions, any similar experiences with seizures? I don't know what we should do...

David is sleeping peacefully next to me, here in ICU. I will be sleeping next to him in a recliner tonight. He looks so fragile to me....just a baby stubble of hair growing back on his head, and his skin is so white...almost translucent. I can see his veins through his skin. He has dark circles under his eyes and he has red and purple and black bruises all over his body. He's been through so much.....so much pain, so much fear....I hate it with everything in me.

Please pray for us.
Love and blessings,
Cindy
PS The vascular team said that David will have to take blood thinners for the rest of his life. Or until he is cured of cancer. Two shots in his stomach every single day. That is probably a small thing, considering the whole picture, but the shots hurt David a lot and he hates them. He was very quiet and down after he heard that bit of news.

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

You are in my thoughts and prayers, and I am sending more out your way! I wish I could give you a hug and tell you everything will be alright! I hate that you are having to go through this! Just know that we are all here for you to talk to, and you are never alone!! Please keep up updated as you are able, and stay on those Dr.'s with whatever questions you need answered.

Michelle

connsteele
Posts: 232
Joined: May 2011

I feel so awful about what you all are going through. Prayers, prayers, and more prayers are going out for you and David. It just has to get better.
, Connie

Jenny2008
Posts: 7
Joined: Sep 2011

Cindy:
I am so sorry to read this update. It breaks my heart, truly. As I read through, I wondered if I would be able to react as you have and keep my wits about me. You inspire me. I am so afraid of the future and that is just not the way to live..As much as I try to live in the present, my mind is full of "what ifs" in the future for my son. Thus far,he has been fortunate but I realize how things can turn on a dime. Please know that there are so many of"us" out here who are thinking of all of you and are inspired and given strength by the example you are giving us.
Jennifer
mom of my boy,age 39
AO 2008

Raani01
Posts: 70
Joined: Mar 2011

CIndy, David will feel better. Be strong.. I wish I know how to comfort you.. Raani

trspaw's picture
trspaw
Posts: 73
Joined: Jun 2011

Praying for David and for you.

GOD Bless
Teresa

sadinholland
Posts: 237
Joined: Apr 2011

Words cannot express how I am feeling after reading your posts. What a blessing for David to have you as a mom. I will be praying.

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

Cindy:

Please take what I say with a grain of salt because I am not or pretend to be a neurologist. But I don't want David to have another seizure. So this is what I think:

1) find out what is the maximum dose of keppra; my sister is on 4000 per day and I remember the pharmacist saying she was "up there" but he had heard of higher. When my sis had her second seizure, we went up by 500mg. And when she said a few months later that she was feeling dizzy and would get fantom pain in her left arm, our neuro-onc offered us to go higher on the keppra and my sis decided that it was worth it. David's dose does not seem adequate.

2) My sister has valium 5mg at home ; if she feels off, like an aura, (which actually has hardly happened since we went up the keppra), she takes it. Valium, like ativan, versed, xanax is a bendoziapines. They just act quicker or slower, stay in your system longer or shorter.

3) Finally: the seizure doc said you could give him versed rectally during a seizure. More and more popular (especially in the pediatric population) is the intranasally versed. So you squirt a few drops in his nose. It might be a bit easier than the rectal route.

4) if he continues to have seizures, then he needs a second seizure medication.

I don't understand why they said that David needs to be on blood thinners for life. Why not think for the duration of the treatment + 6 months post treatment and then never again? Nothing is set in stone. I still believe that David will get better. Especially since the tumor is controlled by the chemo. These setbacks can be overcome. David is young and was an athlete last year. He built up reserves of strenght last year so that he can overcome the blood clots, the cellulitis, the seizures. This moment is why young healthy people with glioma survive.

Keep us posted,

J.

cdolive4
Posts: 34
Joined: Sep 2011

Cindy, as Julia said, I am no neurologist, but I'm leaning a lot about treating seizures through Dave's journey. His brain tumor presented with a seizure, and he has struggled with them ever since, although they have not been as intense as your David's. My Dave is on 6000 mg of Keppra a day, and is doing fine. He is also on 200 mg of Vimpat a day, and I can give him Ativan either nasally or sublingually (tablet under his tongue) if he feels a seizure coming on.
It took a lot of trial and error and an epileptologist and a sympathetic pharmacist to get to this point, but it's been working for a while. I was astonished to hear that it took them a long time (it sounded like) to bring the shot of Ativan into the bathroom when David was seizing earlier this week. I'm so sorry that you guys are going through such a hard time right now, and you are definitely in my prayers.
We are meeting with the doctors tomorrow to see what Dave's next step will be. They think his tumor is back, and are considering a clinical trial for him. There is a possibility that the mass they are seeing on the MRI is necrosis, but there's no way to know for sure. We're probably headed for some sort of surgery next week.
Please know that our hearts are drawn out to you, and that many people are thinking about and praying for you. Love, CindyO

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

Thank you, every one of you, who posted on here and helped me not to feel alone. You guys help me to be strong. Thank you, and God's sweetest blessings to you!

Cindy, thank you for thinking of me, praying for me, and for reaching out to me even with the possibility of a surgery ahead of you next week. I hope and pray that you get good news and good results from your meeting today with your doctors. I so appreciate your taking the time to write to me and share your knowledge and experiences with seizures with me, especially since you also are facing very tough times. Please, if you can, please post today and let us know how your appointment went today, and what direction you will be going in your husband Dave's treatment.

Julia, thank you for your information and your insight. I so appreciate your empathy for what I am going through with David. I still smile when I think of your earlier post and how you said that you danced when you heard about David's tumor shrinking. :) Makes me happy! I am going to ask about that nasal spray too. And thank you for thinking that treating David for his whole life with Lovenox might not be necessary.....

After I read your guys' two posts, I talked to one of the doctors about my concerns. They are planning to discharge David today......but only if I am okay with it. David, of course, wants to get the H--L out of here. I told the drs that I wanted to make sure David has been on all the new medicines for a minimum of 24 hours before we go home so we will have an idea if he is going to have some unforeseen freaky reaction. I'm really hating surprises.

I also said that I want to go over the seizure situation and treatments in more detail. I said that I didn't feel good about not staying on the second seizure medicine. (Gabapentin). The neurology team told me that they agreed with me and that they plan on keeping David on Gapapentin for at least the next two weeks, or until the bacterial infection is cleared up. I think that was their plan before I even said anything. I feel a little better since I heard that bit of news.

The consensus among the doctors--the medicine team and especially the doctors on the neurology team--is that the 3,750 mg of Keppra was working because David didn't have a seizure from Oct. 26 to Jan. 23. They all think that the 1/23 seizure was triggered from the start of the cellulitis infection, and the one on 2/5 was from the infection and the antibiotics--the infection being a bigger factor than the antibiotic. They feel that once this infection is resolved, 3,750 mg will again be a sufficient dose. They told me that anti seizure medicines themselves are not "benign" drugs and that they wanted to keep David at this dose if at all possible. Unfortunately the only way we will know if it's enough is if David seizes again. That makes my blood run cold.....I guess it's going to come down to whether I trust them or not.....very scary for me. I want to see if they will increase the Keppra or add (or stay on) Gabapentin after the next BBBD. I don't know if you can just randomly add and stop taking anti seizure meds. I'm sure you need to taper off....I don't see a point in tapering off the Gabapentin if David is going to have a BBBD immediately after recovering from the bacterial infection. If a BBBD could trigger a seizure, surely he should stay on it?

David slept a lot yesterday. Probably from a combination of the new long term pain medicine that they started to give him, and from having those seizures, and from the added Gabapentin. The doctors said that any increase in seizure medicines will have even more of a sedating effect.

This hospital is fantastic. The support that they are providing is so helpful to me. They have a case manager who is setting up all the home care stuff. It looks like I will be able to take David to our local hospital in Salem every day for the IV antibiotic infusion and one of the two daily dressing changes. That way they can see if I am changing the dressing correctly and make sure that it is healing. We will go in every day for two weeks. They could have gotten a home care nurse for us but I feel like it would be better for David to go out and have it done instead of keeping him at home like an invalid. We will make a daily event of it....we will get a Starbucks and a newspaper, go to the barn and feed my horse, maybe do a little visiting with friends while we are out---we will take Christy and her kids with us--easy to do since she lives right next door to me......I can't tell you how my heart longs to do these little daily excursions......

Julia, I asked Dr. Neuwelt (our big dog NO) about the lifelong Lovenex...and he said the EXACT same thing you said....he said that he would think that we would revisit using Lovenox (or any blood thinner) 6 months "post operative." Oh, that gave David a little glimmer of hope to hold onto! And do you know what else he said in that context? He said...."For life? That's a long time...." He used the words "long time" in the context of David's life! This from the doctor we used to call Dr. Negativity because of how frequently he made comments about the 3 to 5 year prognosis. I think Dr. N thinks that the BBBD may help David a lot. This is the first glimmer of hope I've had about being able to beat the tumor since we first found out about David's recurrence in July. Funny to think that the first hopeful feelings came out during this nightmare time we've had recently.....

The plan is for David to go home with me and recover from the bacterial infection...it should take about 2 weeks. In 2 weeks, they want to do another BBBD even if the clots are still there, even if David's wound from the abscess surgery is still not closed...and they don't expect it to be closed. They will not do another BBBD if the bacterial infection isn't totally gone. I want David to do another BBBD but at the same time, I feel physically weak at the thought of it. My legs get rubbery and my hands and knees start shaking. I tell myself, "one day at a time, one day at a time..."

What a roller coaster of a ride......thanking God that even when we go down, down, down...we are still continuing to go up sometimes too.....

Love and blessings to you, my dear friends.
Cindy in Portland/Salem, OR

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

Dear Cindy,

Yes, one day at a time, Love. Unfortunately, now is a time where everything is "hitting the fan" all at once. I hope you and David can find a way for a little "peace" each day. That can come from personal choice. I have known people who have found 10 minutes, even in the hospital, with music, videos, meditation, or anything that just quiets the mind and environment to make it relaxing for just a little bit (my choice is music). That little bit can be very recharging!

Cancer is stressful even in the best of situations. I hope you can find a little peace and we will pray that David feels better!

Stacy

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