Choosing Hope

The last month has been one crazy ride of emotions for our family. Currently, we are in the Pediatric Intensive Care Unit at Doernbecher Children's Hospital while Keith recovers from a brain biopsy performed earlier today. I've avoided blogging about everything because I'm either in denial or hopeful that what we've been told for the last month is not true. I choose to call it hope rather than denial because it just sounds better, doesn't it? My Dad told me weeks ago that hope can be a very powerful thing. My inner mantra since that conversation has been, "I choose hope. I choose hope. I choose hope."

Ever since Keith's hospital stay for his seizures, we were told that there were some abnormal findings on his MRI. Abnormal as in, recurrent disease. As in, his cancer is back.
For Keith's type of cancer, this is devastating news. There is no treatment path for a cure for a medulloblastoma relapse. The survival statistics are grim. Brent and I just couldn't believe what they were telling us. They performed another MRI one week later to see if the seizures were causing some of the abnormalities, but again we were told the abnormalities were still there and had actually gotten worse in one week and now they were seeing some spots in his spine. (He has had two spinal taps since then which both came back negative. Good news.)
After the second MRI this month, we had the most heart-breaking conversation of our lives with our oncologist. She basically reviewed some studies that we could consider for treatment that could give Keith at best, some quality-of-life time left, but little else as far as a cure. She also said she would respect our decision to do nothing and just enjoy what time we had left which would be measured in months, not years. She cried with us.
Obviously, this news was shocking. We felt blindsided. Keith has progressed all month with his appetite, his mobility and his energy. Clinically, he is showing basically no signs of recurrent cancer. It just didn't make sense. So, we decided to get a second opinion and again, the tumor board told us that what they are seeing is most likely a relapse. We begged them to consider any other options as to what they might be seeing and they agreed to a biopsy before we considered any treatment options. Since then, we have officially switched Keith's cancer care to Doernbecher which we feel is the best decision for him right now. We have been very happy with the treatment he received over the last 16 months but recognize that this is a new phase, a phase where we need to be connected with the best and newest treatment options around the country and feel good about the decision to move. It has been hardest on me. I made friends with every single one of Keith's nurses. The nurses in the Clinic, in Day Treatment and on the Floor. I know about their kids and their hobbies. We've laughed and we've cried together. In addition, I just miss feeling comfortable and knowing where everything is! Being in a new place has me all turned around but again, we feel it is the best decision. Keith's new oncologist is a Harvard-trained, Brain-tumor specialist and she's awesome. If I were 100 times smarter, I think she might consider being my friend.
I've been nervous to go public with this information because I feel like if I do, I'm admitting that Keith could really be experiencing a relapse and we feel so hopeful that it's not true so why make a big deal out of something that could be nothing, right? But the fact of the matter is that two separate brain tumor boards have come to the same conclusion and there was enough material to easily biopsy. So something is in there that shouldn't be, we are just hoping and praying it can be explained by something else. Anything else besides cancer. So, call us crazy, but we are still hopeful. (He also has a decent size incision running vertically in front of his right ear, which would be difficult to explain to people, so I figured I better just explain everything.)
The pathology results from the biopsy should be back by Thursday or Friday and I promise to update when we know something. After spending the entire month in inner turmoil, we can hardly stand the wait to get accurate information about what we are dealing with.
Either way, I can honestly say that we feel peaceful tonight. The hard part for us has been deciphering whether we feel peaceful because we are going to get what we want and the biopsy will be negative or if we feel peaceful because we are about to be supported and strengthened through difficult months ahead. Even more difficult than any we've already experienced. 5 weeks ago we thought we had put all this behind us. Again, we are learning how quickly our lives can change.
Along with change, we have also seen miracles happen in Keith's treatment so far and we know there is no limit to the miracles the Lord can perform in our lives. We also recognize that sometimes the miracle is receiving our deepest desires, and other times the miracle is the ability to endure the unimaginable and accept the Lord's will which might be different from our own.

This is Keith prior to surgery this morning. He was so happy and sweet, as usual. Even though we woke him up to take him to the hospital, he never asked questions or complained. He played happily in the waiting room even though we ended up waiting for 3 hours. He was very hungry and thirsty and it was so hard to deny him food when we've been encouraging it so much lately! He is a Superhero in every sense. Tonight he even said, "Thank you" to the nurse when she removed his catheter. What 4 year old says that?!


We took a special trip to Great Wolf Lodge with some of Brent's siblings and their families and his parents. Keith has been begging to go back ever since last year but because of his immune system we really couldn't go. When we got the bad news a few weeks ago, we needed to get away with some of our favorite people and we knew where we were headed. I wanted to capture every moment so I took lots of pictures and had a hard time not including most of them.



Cousin Jade in the arcade.



Julie, Hunter, Jade, Brent and Keith enjoying some arcade time.

Jade loving the slide. She was one brave little lady even on the big slides!

Caden and Clint

Cohen trying to soak his cousins.

Grandma and Keith.

Jade being silly.

Aunt Annie and Fisher loving the water.

Caden squirting anyone he can!

Caden waving hello.

Grandma hanging out with Keith, Ally and Fisher.

Ally getting in some good soaks.

Enjoying some family time in our "cabin".

Grandpa taking Cole and Ally to dinner.

We had a few other happenings this month that I will attempt to catch up on this week. One thing I cannot skip is Brent and I celebrating our 11th wedding anniversary. It was just a quick dinner, but a night out is very hard to come by these days. We savored every second and got a chance to actually converse uninterrupted. I felt grateful to be reminded how much we enjoy being together even when conversation is a little heavy for our taste. Somehow, we've managed to keep our sense of humor which has been a lifesaver for us both.

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.

Tannifer's Wedding

Tanner and Jenny were married May 19 and we were so excited to be part of their day. They looked (and are) so happy to finally be together. We LOVE Jenny and will really miss her help. She has been a huge part of getting us through the last year. If I write any more about Jenny I will cry, so just enjoy the pictures.

Love these Eckhardt's.

Isn't she stunning? She looked absolutely amazing.

The weekend before the wedding, my sister, Syd and I threw Jenny a bridal shower. It was seriously awesome. I can say that because I didn't do anything. It was all Sydney. For pics, click here.

*Thanks to Chuck Branen for all the photos!