Losing the War

Today we learned that despite the many battles that Keith has won over the last year and a half, our sweet little boy will ultimately lose his war with cancer. The news is crushing. We continue to believe in and hope for a miracle in his final hour, while simultaneously praying for the strength and understanding to accept the will of God, even if it’s not our own.

About a week and a half ago, Keith began having some problems with his right eye.  Darc and I noticed that the pupil was slightly dilated and unresponsive to light.  We also noticed that the range of motion in his eye appeared to be limited and that his eyelid was starting to droop a little.  We knew that all of these eye functions were controlled by the same cranial nerve and we were nervous about what it meant.  We hoped that it was related to his recent change in anti-seizure medicines, but after his Neurologist told us that a change in medicines was unlikely to have this effect, we called his Oncologist.  His Oncologist instructed us to take him to the ER, which we did, on Monday, August 13^th.   In the ER, they did a Quick Brain MRI, which is designed to show any emergency issues in the brain (hemorrhage, fluid buildup, aneurysm, etc.).  The Quick Brain MRI didn’t show any emergency issues and even though it’s not intended to show tissue or other detail of the brain, there were some things they were seeing on it that had them concerned.  They let us go home from the ER on Monday night, but scheduled an immediate, full MRI of the brain and spine on Wednesday, August 15^th.

We got the results back on Thursday, August 16^th.  Though we’re not trained in reading the Radiologist reports, we’ve read enough to know that this one was really bad.  The cancer was diffuse throughout his brain and spine.  The term they use to describe it is leptomeningeal carcinomatosis, which basically means that the cancer has formed a sheet over the coverings of his brain and spine.  It’s a significantly worse outcome than if he just had a single, recurrent solid tumor mass.  In addition to the diffuse covering, he now had significant masses that were compressing various points along his spinal cord.  We were devastated.

We were in frequent communication with his Oncologists at Doernbecher and they scheduled an appointment for us to come in on Wednesday, August 22.  His primary oncologist was out of town until then and they wanted a couple of days to come to a consensus on what, if any, treatment to consider for him.  We had plans to go to Yakima to see the Grandparents this week, so we left Friday and came up.

Up until this last weekend, besides his poor eye and the near-daily vomiting, Keith was otherwise doing really well.  He was still active, happy and playful, scooting around all over the house, playing “pigs and wolves” and talking about Scooby Doo. 

Things changed very quickly for him over the weekend.  Starting on Saturday, he became much less talkative and more lethargic.  He became physically limited, almost overnight, unable to scoot around on the floor or sit up unassisted.  Both of his eyes now have a pronounced droop.  Neurologically, he would stop talking altogether, at times, and was increasingly unresponsive and disconnected when he was awake.  He experienced more seizures.  We could not believe how quickly he was deteriorating before our eyes. Fortunately, despite his condition, he does not seem to be in any kind of physical pain, which we are very grateful for.

We met with his Oncologist, Dr. Nazemi, this morning at Doernbecher. After looking at his MRI scans in detail with her team and with the Neurosurgeon, she confirmed our fear that there is really nothing more to do for him at this point besides keep him comfortable and happy.  After reading the report last Thursday and seeing his rapid decline since then, we suspected that would be the case.  The cancer is widespread and aggressive.  Her team was very surprised by how quickly it had reached its current state, especially given the encouraging test results we received in July. 

Though impossible to predict, she suspected that Keith’s time on earth is limited to just a few more weeks.  We have never felt the kind of shock, disbelief, and crushing grief that we’ve experienced over the last week.  The thought of a life without him seems simply unbearable.

Up until now, we have been constantly reassuring Cole that his brother was going to get better.  Cole prays every day to “please bless Keith, that he can get better so that he can run and play with me again.”  After this report though, we sat down with Cole and tried to explain to him that Keith probably isn’t going to get better and that at some point he may fall asleep and not wake up and will then go to live with Jesus.  Cole is a very astute little kid and we didn’t want him confused about why Mom and Dad and others are so sad about Keith.  He didn’t ask a lot of questions right now, but we wanted him to know that we would answer anything he wanted to know at any time.  Thankfully, he has not seemed to internalize it yet and remains his happy and playful self.  He and Ally have been so therapeutic to us through all of this. 

Darc and I came back to Portland on Tuesday night in preparation for his appointment on Wednesday morning. We left Cole and Ally with the Grandparents.  Being back at our home, in a familiar environment, seemed to perk Keith up a little bit.  He was more talkative and much more himself and we relished in having his sweet personality all to ourselves for an evening at home, undistracted by anything else.  After his appointment this morning, we came back to Yakima and he’s continued to have a pretty good day, especially relative to Monday and Tuesday.  He’s been more talkative, alert, and awake today.  Even though he can’t move himself, he’s wanted Darc to carry him around and play “pigs and wolves” while Aunt Darel chases them.  It’s been wonderful to see him having a little fun. 

When he is awake and feels like talking, he has been so affectionate to Darc and me over the last week.  Movement for him is a struggle, but he’ll say, “Hey Dad…I want to give you a kiss.”  Then he’ll reach out and grab my face and pull me into him to give me the sweetest kiss on the cheek.  In his weak, but angelic voice, he’ll say, “Hey Mom…I love you” over and over again.  He seems to have a very special gift in knowing when you need him the most.  Even in his weakest state, he continues to uplift, inspire and reassure us and we will savor every remaining second we have left with him in this life.

Despite our sadness, we continue to feel the tangible love of a perfect God.  Our faith in Him is not dependent on outcomes.  Up until now, we have focused on having the faith necessary to see Keith healed from his disease.  But, we are learning that faith also means having the faith necessary to be accepting of a will that is so different from our own.

Ch-Ch-Ch-Changes

We've had a few good changes around here in the last week.

First, Ally turned 3 years old. I'm pretty certain she's 3 going on 13. She's smart and sassy and has developed what I have coined an "Ally-tude" but we are still crazy about her. She's also thoughtful and loving and full of fun. I love how she can sword-fight with the best of them while wearing her princess dress or how she can climb every bit as good as Cole but still wants to take care of her baby doll. She wanted a "Pink party" for her birthday. Everything has to be pink these days...

Aunt Darel made her cake which was a pretty impressive zebra cake she found on Pinterest with pink frosting. Ally loved it! This is evidenced by all the licked places on the top of the cake BEFORE the party.

 Ally was absolutely spoiled by EVERYONE. Grandparents, Great-Grandparents, Aunts and Uncles and the Eckhardts. It was pretty entertaining watching her open presents. She was so excited and just kept jumping from one to the next saying, "Oh my! Oh my!" I don't even know where she got that expression.
And yes, she is wearing her winter princess pajamas in 85 degree weather. There are some things I am just too tired to fight about these days. I've officially lost the pajama war. At least Ally wears clothes most of the time and certainly a lot more than Cole.

 Ally got lots of fun girly stuff, including the lipgloss that is gobbed on her face in this pic.

 And her Pretty, Pretty Princess game was a big hit. Although it was difficult to tell who was having more fun playing--her or Aunt Darel.



The day before Ally's birthday, Aunt Emily was gracious enough to cut my hair for Locks of Love. She did an incredible job! She cut 10 inches and I don't miss any of it. Brent on the other hand will need some intense psycho-therapy to deal with the loss. Just kidding.

And one of the greatest changes of our entire year has been saying goodbye to Ally's pacifier, affectionately known as her "nuki". I'm completely embarrassed that she's had one for so long but given everything going on, I wasn't prepared to deal with the consequences of her missing it. ie: less sleep and more whining.
It has turned out to be very easy because we gave her complete control of the entire process. For months we've been preparing her for sending her nuki's away on balloons after her birthday because "3 year olds don't have nukis". (I got the balloon idea from a dear family friend. Thanks, Patti!)
Ally talked about it a lot but I wasn't sure if it would be that easy to execute. I was going to do it the day after her birthday so she could sleep that night but in the middle of her party she told me it was time to send away her nuki's on her pink balloons so we quickly tied them all to the balloon bouquet and before we hardly got any pics she had let them all go. I was pretty nervous because it all happened so fast but she has done great. She hasn't asked for them once. It takes her longer to fall asleep but that's about it. It feels awesome to be free of that thing and we love seeing her entire face all of the time!

 Saying goodbye and watching the balloons carry her nukis far, far away.

This "Nuki Nuki" video has been a hit at our house with the kids, once again, thanks to the influence of Aunt Darel. The only thing more annoying than this video is having a child addicted to a Nuki! Thankfully, we are rid of both!

July

I don't know where to start so I'll just quickly cover July as best as I can. The day after we found out about Keith's negative biopsy results we felt such relief and joy. I tried to process it all that next morning during my run and my spirits couldn't even be dampened by the bird that unleashed it's Friday night buffet on my bare thigh. I laughed to myself and used some nearby pine-needles to scrape off the load of sticky refuse and felt so grateful to just keep on running and enjoy the moment of relief from a heavy burden we had felt for several weeks.
It was liberating to cancel our original plans to start chemo again. We had already selected a clinical trial and we had a start date of July 17. When that date came and went, it was pretty humbling to recognize what we didn't have to watch Keith suffer through. With this perspective, it has helped with the challenges of the last 6 weeks.
Keith continued to have seizures in the first part of July and we didn't like the side-effects of his original anti-seizure medication, so we are in the process of switching medications. This takes several weeks because you have to slowly introduce a new one and slowly taper the old one. Meanwhile, it has caused Keith's sleep to be all over the place, mostly in a state of not sleeping but very tired. It's been difficult to see his progress slow to almost nothing because he's so tired all the time. He has missed several Physical Therapy appointments and all of his summer preschool because he simply cannot function in this ever-changing sleep/awake cycle. Needless to say, it has been exhausting for Brent and I as well as our parents and our siblings who have helped out this summer. My sister, Darel, has spent most of her summer at our house before she goes back to BYU next week. She has been a lifesaver! I think she's ready to go back to college where she will actually sleep more than she has all summer. I hope I haven't scared her from motherhood forever. The two of us had grand plans for getting the kids out and about this summer and we've done our very best but it just hasn't gone as planned. Sometimes one of us would just take Cole and Ally out but most of the time, we would try to get Keith out too, even if it was for a limited time.

A few really exciting things for Keith has been watching his hair come in so nicely and watching him chunk up a bit. It's amazing how much healthier he looks with a few inches of hair on his head and a few pounds on his cute little bod.

We also made a trip up to Yakima in July while Brent traveled. In addition to these pics, Syd and Nick made a video that can be found here.

Thankfully, Keith's seizures have stopped. So, the medication is doing its job. He still continues to be nauseous as he vomits once or twice daily. We are told that whatever it is in his brain is causing the seizures and the nausea. So, while we are so very grateful the biopsy came back negative, it's still difficult to see such extreme side-effects from something that is "unknown." Knowing what we would be going through right now if it was cancer, helps us be patient and keep the situation in perspective.
One other really neat thing for us has been getting to know Keith's personality better this summer. It may seem strange, but after him spending the last year and a half so sick, he didn't really have a lot of chances to be feeling well enough to show his personality other than the "sick Keith" which is still an amazing little person. But it's been fun to watch him be such a friendly little guy verses the kid who cried anytime someone in the clinic looked at him for fear of what was coming next. Now, whenever we are in the clinic, he waves to everyone that walks by and often says, "What's your name?" "My name is Keif." He will then ask you if you like rocky road ice cream or if you like Smarties candy. Or he might tell you that he went to the "big Ice Age movie". He's very repetitive and just so darn sweet. He tells Brent and I, "I love you" over a dozen times every day. He'll say, "Hey Dad! I wub you." It melts us every time. His favorite game right now is playing "Pigs and Wolves". He hides behind a door and the other person pretends to be the Big Bad Wolf and huff and puff and blow down the door. He plays this 24 hours a day and night! I try to be patient when he wants to play at 2, 3 and 4 in the same morning!!! He's just too sweet. You cannot tell him no when he wants to play "pigs and wolves". I might have to take it up with Grandpa Burnett who started this game in the first place...! He loves it and it gets him moving so I really can't complain. Anything that makes him happy, makes us really happy. I've never known such a sweet and innocent person. He is truly "without guile" and angelic in every sense of the word.

Live in the moment

Tears of relief have replaced tears of anguish tonight after many long days of waiting. We finally have some news. Very good news. The biopsy shows no cancer cells. The pathologist was pushed to look more closely when no initial cells were found and still found no trace of cancer. The neurosurgeon is confident in his sample. The sample is negative for fungus and they have already ruled out infection. So, what is it? Nobody knows. But we will take an "I don't know" over "cancer" any day.
Our oncologist is truly amazed. (She said so several times in our conversation.) She was sure they would find cancer and was feeling like she had almost made a mistake in ordering the biopsy because we lost precious treatment time.
Personally, I give credit to Brent for pushing for the biopsy. All along he just kept saying there had to be another explanation. While I was hopeful, I wasn't as confident. How grateful we are for divine guidance in wanting to be sure before pushing ahead with treatment. We both felt that despite what two separate boards of experts were telling us, we just had to know for sure.
Of course we feel an immense amount of relief but with a bit of reservation. The tumor board will continue to watch this closely over the next few months. An MRI is scheduled for 8 weeks. But for now, we are following Keith's lead and living in the moment. This is the best moment we've felt in a long time and it is filled with happiness and gratitude of the deepest kind.
I wish this was more eloquent and I could elaborate more, but we are celebrating tonight and I must get back to the party.

***Keith, by the way, is home and recovering. He's been feeling pretty crummy this week but perked up significantly today.  We can't stop squeezing him and just thinking about all the time we still get to spend with him. I know I'm biased but he truly is one amazing little soul with clearly more to do here on this earth.  I'm humbled to know him, much less be his mom.

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.