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.