Wednesday, April 19, 2017

Our Latest Adventure: Sean's Brain Tumor.

Hi, Friends! SO. As we all know, I'm terrible at keeping up the blog sometimes. Most times... but I have a good excuse this time and I'll tell you all about it.

Chapter 1

It started early March, Sean was getting frequent headaches and would get dizzy upon standing up too quickly. Of course, my mama brain (and in this case, wife brain) was turning and I was getting nervous something was going on below the surface. Anyway, it kept happening and he got sufficiently dizzy one friday while playing softball with his league from work, which made him nervous.

The Sunday after Sean turned 33 (Happy Birthday, babe!) we were sitting in church and Sean texts me from his class that his headache has worsened and he's hot and dizzy. I texted him back that we should go to the hospital and he said "I'll just wait and sleep it off when we get home." And I tried texting him about all his symptoms and that he should be more worried. like 5 minutes passes before he texts me back and I was just waiting for some guy to come bursting into the women's class (here called Relief Society) shouting "Sister Donner! Your husband!" and I, with my things already together ready to leave, would say "Yep, I'm coming. Help him to the car." But he texted me back that he was going to leave the class. I went to get Milo from the Nursery and picked him up from around the corner and he was not looking good.

I held Milo in one arm, helped Sean be steady to the car with the other, and kept my cool the whole time. I was en route to the ER when Sean insisted we go to Urgent Care because it's cheaper. Men, right? They took him right back in Urgent Care, took his vitals, and sent him out for me to take him to the ER. Of course, as he walked out to tell me this, he looked like they just told him he has a cold. They didn't. They thought it might be a stroke.

We went to an ER, they checked us in, and eventually we were seen by a doctor and Sean had a CT Scan. I forgot to mention, Sean hadn't eaten anything that whole day besides half a gatorade I made him drink in the car, some crackers from the diaper bag, and some bites of a granola bar my mom brought for me when she came to pick up Milo, because it seemed like it was going to be a long day for us. Little did we know...

About an hour later, the CT scan came back and the doctor gave us the diagnosis. Sean had a hemangioblastoma on the bottom of the back of his brain that had developed a cyst that was pushing creating the headaches and a build-up of spinal fluid. The doctor (imagine a taller this guy) told us we had to head over to another hospital, check into their ER, and schedule a surgery for either that night or the next morning.
This is Sean talking to his Mom about how he's about to have brain surgery.
Everyone we told thought it was a joke at first. Morbid joke, guys...

Oddly enough, we were laughing about it. It was so absurd to be in church one minute and scheduling brain surgery the next. We went home, packed up a couple things, not really knowing what was going to happen next, called a couple neighbors to come give Sean a priesthood blessing, and packed a bag for Milo's stay at my parents house. Around 4:30 that night, we finally went to the next ER, checked in, and they put us in this terrifying white box room with only one folding chair to sit on.

At this point in the story, I'm going to remind you that I'm pregnant. Still. Through all of this. So I'm starving, uncomfortable, and a little bit sick. Okay, we can continue.

An hour or so after being checked into this second ER, we finally see a doctor. Sean goes through the same spiel he had with the last doctor, only this time included the bits about his having a tumor. They scheduled him for an MRI, told me where the cafeteria was, and left. I went to the cafeteria but forgot my wallet. On my way back to the ER was when it all settled and I understood what was happening. I broke down. At that point, my brother-in-law who lives in UT offered to come and bring me dinner.

I got back to the ER room, they took Sean away for the MRI, and I called my mom to tell her all the news. She got Milo to say "I love you, Mom" on the phone and, of course, I broke down again. Sean got back and, shortly after he did, the surgeon came in to talk to us. He showed us the pictures, talked us through the procedure, and reassured us that he's been doing about this same operation for 30+ years. We were in good hands. In fact, everyone who took care of us through the entire experience were extremely nice and helpful.

After that, Brady showed up with McDonalds (Sean was told he could eat until Midnight at this point) and we ate quick and then were moved up to Sean's Neurosurgery recovery room for the night. That's where I left him and walked all the way through the hospital back to the car. I broke down halfway home and detoured to Sean's cousin's house, where his wife (who is one of my best friends who I've talked about on the blog before, Kember) consoled me and listen to my sobs and offered a room, which I tried sleeping in until 2 am. I realized that just wasn't going to work for me after lots of tears, some dry-heaves, and insomnia (right? bleh.) So I snuck out and headed home.

Chapter 2

The next morning, I woke up to another of my best friends coming to walk our dog (THANK YOU, KAYLENE!). I got up, showered, sobbed some more, and headed to the hospital. Sean's surgery was scheduled as the 3rd operation of the day for this surgeon. We sat in his room forever, Kember brought me some lunch and talked for a bit, and then they wheeled him down to the OR at around 3:30 or 4. 

Kember came back and stayed with me in the waiting room for Sean's surgery. My parents eventually came down with my sister and Milo to wait for a little bit. Sean's surgery, once he was finally being operated on, took maybe an hour and a half. At around 6, the surgeon came out and told me all was successful and he was certain they got it all and that it wasn't cancer. A huge relief, that I strangely wasn't even actually worried about ever. 

He was awake and responding well, so I went up to the ICU with him and sat in the waiting room for about 15 minutes while they situated him. The whole way up the elevator, Sean was just talking about how "so pissed off" he was. It was adorable. Even the nurses thought so. They said he was the nicest pissed off person they ever. I stayed with him for about 2 more hours while he drifted in and out of sleep, called his mom, and cried some more being upset I had to leave him. (PS, the accomodations for spouses in under-construction hospitals is less than par.) Eventually, I did leave because I was getting hungry and he was just being [adorably] pissed off. 

I went home and Kaylene came over to talk and listen to me vent. And give me a nice shoulder rub. (I have good friends:) ). I eventually went to bed and the next morning, Sean was still in the ICU. They had requested a room for him back on the recovery floor, but it wouldn't be open until later that day (they initially thought till the next night, but we luckily got to move around 2 or 3 pm.) My parents came down in the morning and we had lunch and then Milo saw Sean for the first time since Sunday. 

It was heartbreaking. Sean wanted to give him a huge hug and talk to him, but there was no way for this to happen. Milo ran around the room for a bit, and I held him up to see Sean as long as I could. This was one of the hardest parts of the whole thing. 

About a half hour after Milo and I got there with my parents, a room opened up and we said goodbye to them and we got ready for the move upstairs. Once we got situated, Sean's coworker Todd came by with a huge gift and some treats for Sean. He had pooled money at work and bought Sean a Millennium Falcon Lego set. (Over the first week we were home, he would gradually put this together which helped work his neck muscles that were cut during the surgery and keep him busy when he was awake. 

Chapter 3

We were in the hospital until that Thursday. Sean started off walking with the physical therapist and they deemed him strong enough to walk with only me on the first day back, which was great improvement. Most of the days, we just sat in his room. He'd take naps, I'd play on my phone or color pictures (the company he works for sent an AMAZING gift basket with lots of food gift cards, some snacks, some coloring books and markers, and a toy for Milo. 

We had some family visit and Sean's coworkers from his last job who he still keeps in contact with. One of the days (I forget which, they all kind of run together), Sean's brother Brady and his family brought Milo down for dinner. It was really nice to see Milo again. We were missing him like crazy, especially because he was teething hardcore and obviously struggling to understand why we weren't there for him. He cuddled on Sean and ate some apple and cheese, but was mostly content just sitting there with him. Eventually, they had to leave and I took him to the front door and it was awful to leave him. 

Like I said, all the days sort of ran together and then Thursday came and Sean was finally discharged at about 4 and we went home. I dropped him off, got him situated, and then my parents brought Milo home and stayed with them while I ran and got Sean's prescriptions filled and for dinner. The first few days home with Milo and Sean were difficult. Milo was at the tail end of teething, and was just hitting a big "terrible two" phase, and Sean was still too weak to really do much (although he tried and I had to tell him to sit down more than once). 

I set up an event for Sean for whoever wanted to send him things to do while he was at home (because I knew he'd go crazy without a project) and we got a fantastic response! A bunch of Sean's family and friends sent him things and he was just busy enough for the whole time he was still off work. We went out to eat to test Sean's strength (and to use those gift cards) and went to Sean's work for lunch one time. Sean was back to work on a shortened schedule after about a week at home (like I said, he's not one for resting). 

We have had a lot of friends bring over dinner and/or watch Milo for a spell and we are SUPREMELY GRATEFUL for everyone who has helped out in any way. Dealing with brain surgery, pregnancy, and a crabby toddler was rough for the first little while and we are so grateful for all the lovely people we have in our lives. THANK YOU!! 

Sean's staples came out the second Friday after we got back. He has a lot more movement in his neck since the staples were removed and he's back to driving, which is nice. He needs to take a nap every day still and he eats a lot (the brain needs a lot of calories to recover) and we still take it kind of slow (we as in I'm still pregnant, ya'll). We're still planning on all the things we have planned for this year, and we're back to a regular routine, which I love. 

Thanks again to everyone! He has a followup in a couple weeks and an MRI after that and I'll do my best to update facebook/instagram if anything else happens. YOU GUYS ROCK!
Also, If you made it to the end of this, Here's an award for you.


Love, Ellen