Highs and Lows

June has blown in a whirlwind of emotions. On Friday, June 1st, I had a planning meeting with the Early Intervention team and was feeling good about where Keith's post-treatment plan was heading and even had him signed up for preschool this summer. I was feeling a bit overwhelmed by everything I was supposed to be managing given the recommendations given to me recently by the speech-therapist, the physical therapist, the feeding clinic team and the oncologists. But I knew I would just have to get used to making those recommendations part of Keith's (and my) regular routine.

Friday afternoon, I left my "mom hat" behind and headed to the coast with Brent so I could set my sights on a Boston Qualifying marathon time the next morning. Funny thing was, I wasn't even registered so I had to wait until all the bibs had been claimed that night and hope for some leftovers. Luckily, there were plenty, and so at exactly 9:01 pm, I was officially entered in the Newport Marathon. And by 7 am the next morning, I was pounding the pavement towards a 3:29 finishing time. Not as fast as I had hoped, but fast enough to qualify for Boston and get me in a decent wave for registration this September. By the last 4 miles, I knew I could not have run any faster.

The race meant more to me than just qualifying for Boston again. I wasn't sure if I could train and still take care of Keith and the rest of our family the way I wanted to. I missed a few runs here and there and I didn't do a stride of speed-work but was able to focus on my family and keep training as a sidenote. That's how I wanted it to be. And somehow I was able to do that and still get a fast enough time. I was happy about that.

This race also allowed me to feel like our lives were starting to get back to a new normal now that Keith's treatments were over. It was my way of showing cancer that it can't ruin everything.  And mostly, I just wanted to get out there and run like hell for all those children like Keith who can't run right now or who never will run in this life. So, yes, I was thrilled with a BQ, but even more excited about what the race symbolized for me and for our family.

 

For an overpriced race photo that I will never purchase, click here.

Aunt Darel helped the kids make this welcome home poster for me.

As soon as Brent and I got home Saturday afternoon, we hit the ground running. We had an Elder's Quorum party with about 40 people at our house that night and I literally crashed into bed, late Saturday night.

The low part began when Brent woke me up a few hours later at 4:44 AM Sunday morning with serious concern about Keith. Keith had vomited and was now almost completely immobile and he was also non-responsive to commands. He's gaze was fixed toward his left. I immediately called our oncologist and she assumed it was a shunt malfunction and told us to call 9-1-1. As I dialed and spoke with the operator, I was completely panicked on the inside as I tried to keep it together emotionally. Luckily Brent was very collected and calm. It was extremely unnerving to see my child unresponsive and drooling. Even as the ambulance pushed 90 mph on the freeway, I've never felt like it took so long to get to the hospital. I didn't know the difference between shunt malfunction or seizure or stroke or what might or might not be permanent, but let me just say, I've never had such a feeling of complete terror wondering if this was the way Keith would be from now on or if this would just be it for him. A million terrifying scenarios streamed through my head as I sat up front, while Brent remained calm and just kept talking to Keith and asking him questions as he held Keith on a stretcher in the back of the ambulance. Brent was pretty concerned when the EMTs put an IV in Keith's arm and Keith didn't flinch or protest, but just watched, wide-eyed.

Once we got to the ER and Keith's CT scan looked normal, they ruled out a shunt malfunction and decided he was most likely having seizures. They gave him some IV medication and Keith immediately grabbed the nurse's knuckle and said, "Nice to meet ya." Happy tears streamed down our faces as he slowly started to talk again after over 3 hours of silent stares. He then asked where Aunt Darel was and pretended he was hiding from her. Relief flooded through me as I started to recognize the Keith I knew. 

Keith was transferred from the ER to the Pediatric ICU where they watched him closely for seizure activity using an EEG machine. It took a few days for the neurologist to determine the correct anti-seizure medication and dose since Keith continued to have seizures. It was very unsettling to experience Keith's seizures at first. He would just "check-out" for several minutes at a time. Now, if he were to have one at home, I wouldn't panic, but I still hope he doesn't.

 When Cole heard me say that Keith's head was wrapped like a mummy so the EEG leads would stay in place, he immediately wanted to have his own mummy head. It may seem strange, but I really am grateful for Cole and Ally's ability to keep the atmosphere light when things can sometimes be so serious and so stressful around us.

The PICU has strict visitor standards, but Keith was so excited to see Cole and Ally and Grandma Smart and Darel, eventually. Grandma and Grandpa Burnett came down Sunday but between the medication and continued seizures, Keith wasn't really himself.

After 4 long days in the PICU, we were able to bring Keith home, thankfully. It has taken a little while to adjust to the anti-seizure meds but we feel like he's starting to sleep better now and his mind seems more clear now, too. (The first several days were filled with insomnia for Keith. He was exhausted and so were we!) We again, find ourselves adjusting to a new normal. There's just never a dull moment around here. Never a moment to catch your breath, it seems. But Keith is happy, eating more and more every day and more energetic too. That gives us a lot of encouragement no matter what else comes our way.