Glioblastoma Survivor Update – Focal Seizures and Family Time – Typical Glioblastoma Experiences

For those of you who are facebook friends, you have seen a lot of what will be in this post.  When things happen, it is just so much easier for me to pick up my phone and notify everyone in one quick facebook post and then get right back to giving Mike or the kids my undivided attention that they deserve.  I also want to include the reallifeness of those posts here for others going through the same thing.  Glioblastoma is a roller coaster!

Monday morning started pretty calm.  We had taken Kenzie to the park Sunday but Mike didn’t feel like staying long, so we told her we would take her again Monday after school.  Mike wasn’t feeling well and asked if he could just stay home in bed when I had to pick her up, so I left him sleeping and picked her up.  Of course, she remembered the park, so I told her we would have to make a quick stop at the park and get back home to Daddy.  She understood.  Thanks to having Dropcam’s set up at the house, I felt comfortable watching him from the app on my phone and stopping at the park.

When we got home from the park I woke Mike up and he wasn’t feeling great.  It really was obvious at about 3:30 that he felt way off, so I had him sit in Kenzie’s bed while she colored so that I could have my eyes on both of them at the same time.  She said she was going to draw a picture to make him happy.

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He was having focal or partial seizures.  His right hand and leg have been going numb for a couple of months and it has happened more and more often.  Then his right hand would occasionally feel foreign.  The latest is that his leg muscles would tighten and contract.  This also started to happen more and more often and started to last longer.  On Monday, the leg contractions lasted for about an hour and seemed to progress into his whole body tensing up every minute or so.  Two days prior, he had them last 30 minutes.  Each time this happens, I give him an Ativan which hopefully stops seizure activity, or at least eases his anxiety about what is happening.  On Monday, he was looking to me to do something, so after an hour of muscle contractions, I drove him to the ER.  Once there, a blood test showed dangerously levels of potassium in his blood.  After about 6 hours in the ER he was admitted and given insulin, calcium, and several other things to treat the high potassium.  It was probably a blessing that we went and found that out.  High potassium can cause heart related  death is what the doctor told me.  So that was treated right away and by morning the bloodwork came back at a safe level.

October 13th 10:00pm  “I brought Mike to the ER for seizure like activity about 5 hours ago. That episode subsided on it’s own but bloodwork discovered dangerously high potassium so he is being admitted for treatment of that. The doctor had some rough to hear statements regarding Mikes terminal illness and the fact that there is no cure. He’s probably the most honest any doctor has been. We all know the stats but it often goes unspoken. His point was to find out exactly what we were expecting as far as level of treatment. I was clear that although chemo is no longer the best choice for Mike, we will fight for every moment of life that we can as long as he is still having good moments. He still is having awesome days. We came to the ER because of just one scary hour. The rest of the day was great. We still want to treat what we can and are not ready for hospice. If there is any question as to why….just look at this moment that happened earlier today, just about an hour before leaving for the ER. He doesn’t remember why we are at the hospital, but otherwise he is feeling great.”

October 14th, 11:03am:  “It has been an uneventful hospital stay so far. Bloodwork this morning shows that his potassium was lowered successfully after the treatment. They did an EEG this morning although they don’t expect to learn anything from it. A neurologist is supposed to come in. Really we are just ready to go home and don’t expect to learn anything new. Like last nights doctor said, he has extensive brain damage and these things will happen. We just have to learn to navigate this seizure stuff and whatever else comes our way. He doesn’t remember why he is here and just wants to go home. I went over the initial Glioblastoma diagnosis and prognosis with Mike again. He still says he’s going to beat this. Gotta love his perseverance and determination. He didn’t remember what I said for long and continues to ask why we are here and what’s going on. Keep the prayers coming. I don’t feel equipped for any of this, but we have gotten this far, we will continue taking one day at a time. That approach is working so far.”

October 14th, 6:00pm:  “Looks like he’s not being discharged tonight. They just started an IV of another seizure medication. (1000mg Dilantin) He’s been in a bad mood all day about not understanding why he’s here, no matter how many times I tell him. I was hoping they would just give him a new seizure pill and send him home…apparently it’s not that simple. It’s been a rough day. I hope this new medication means we won’t have to deal with focal seizures anymore. I wish he didn’t have to be here aggravated in a small room laying in a hospital bed. I keep thinking maybe we shouldn’t have come to the ER…but his muscles were contracting for about an hour accompanied by confusion and he was worried and looking to me to do something. All I could do was bring him. I guess there is no easy button for this either way.”

October 15th, 9:00 am: “Mike was restless all night. Between him pushing buttons, trying to get up, trying to knock over his beeping IV pole, asking where we were, pulling at his wires and lines, he had me jumping out of my chair 3-5 times per hour. He’s going to laugh at all the mischief he was causing when he’s more alert to understand. I dosed off at about 3am and I woke up to him falling onto the bed because he tried to get up. Rough night. So pray that his strength and coordination is enough for us to go home smoothly. We both miss the kids so much and want to be home with them. We are happy to be going home today!! Along with the 3000mg of Keppra that he has been on, he will start with a dose 300mg of Dilantin daily. He received 1000mg last night in his IV. Hoping for some rest for both of us.”

October 17th: “Feeling blessed. Mike has been resting. He is much more peaceful at home. He’s unsteady and has slept most of the time since we have been home from the hospital. The first thing he asks when he wakes up is where the kids are. I love seeing him cherish them on a whole new level. Yesterday Kenzie had a school fundraiser so we went for an hour with Mike in the wheelchair then he went right back to bed after. He woke up for about an hour as I was getting Kenzie to bed so Cameron made him a bowl of cereal and then Kayla sat with him for awhile.”

Since being home, I do notice he is more unsteady and tired.  Overall he is doing well.  I can’t help but see the positive.  He’s here and we are enjoying what we can.  Kenzie had a fundraiser for school at Chuck E Cheese the evening after he was discharged from the hospital, so I ventured out with Mike and the wheelchair for the first time in a public place.  He can walk, but he is unsteady and he agreed that he’d be more comfortable with the wheelchair, especially if it happened to be crowded and chaotic.  (Which is wasn’t, we went early getting there at 3:30 to beat the evening crowd just in case)


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