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.