It was the evening of Good Friday that we found out. Didn’t “feel” so good, but in all actuality the only vitally important perspective couldn’t be escaped. That of life and death. Of Christ. That He died in our stead to conquer death and rose again so that we could have eternal life.
Our journey began in early March when Daniel started speaking of vision troubles. Initially thinking maybe too much screen time or the need for glasses, I then grew concerned when he used the words, “seeing double.” Everything from the center to the left was seen as double. We made a more urgent eye doctor appointment. Completely missed by the screening optometrist who reassured me that it was not an internal problem, the lead ophthalmologist then came in and diagnosed Daniel with, “sixth cranial nerve palsy.” Still breathing easy with the initial lighthearted perspective about superficial eye concerns, I asked questions about things we could do, for which the doctor gravely answered that we needed to get an MRI. We really needed to get an MRI.
But the MRI appointment took forever. First, we waited a week for approval. Then, the MRI scheduling was going to be beyond two weeks more. Meanwhile, I was reading. Researching. Growing concerned. Much of the literature explained that sixth cranial nerve palsy might be seen in older people due to vascular or other health concerns, but that seeing it in the youth was an, “ominous sign of severe pathology.” The largest percentage of cases were due to neoplasms (cancer). The next was head injuries for which we knew he didn’t have. But there was that little chance, that small percentage, that it could have been from a virus. Maybe it was a virus, I hoped, while I anxiously watched Daniel without letting on my concern. We didn’t have all the information so why worry about what we didn’t know. Besides there’s always a virus, right? So, I waited and watched. Watched for symptoms.
The morning of Good Friday, Daniel woke up and threw up. I knew that could be a symptom. I had read the list many times. No one else in our house was sick (later we learned otherwise, but that is another story for which I am grateful the morning sickness did end up bringing us in) and that it was a onetime occurrence would be unusual for a virus. So, we needed to bring him in. We could no longer wait weeks for the MRI.
I thought my heart would fail me when the hospital triage nurse looked frightened as she reported his blood pressure, which was alarmingly low. They brought Daniel back right away. They started pumping him with antibiotics and I sheepishly consented, even without the bloodwork results back yet and my dislike of antibiotics. I gave permission because I wanted it to be an infection. They could fix an infection, right? So go ahead and give him antibiotics because maybe that would mean it was an infection. But then the bloodwork came back fine. Now typically fine is good. Clean bloodwork sounds good, normally, but not when I know we’ve run down the list of what this could be.
They finally got clearance to do the MRI and wheeled him back in the evening. I waited in the room while Daniel bravely mastered that machine for over an hour. While many of my brothers and sisters in Christ were reflecting upon our Lord at Good Friday church services, I was on the hospital floor begging on my knees for the Lord to, “take this cup from me.” But I am not Jesus. I don’t deserve Jesus. And God, the Father, didn’t take the cup from our Savior, so that we wouldn’t have to face the consequence of our sin.
They wheeled Daniel back to the room and we waited for the radiologist to read the results. We waited and waited. And then I saw it. It really is just like the movies. The doctor walking down the hall with two assistances on either side, solemnly shutting the door behind them as they enter the room, sitting down and stammering over the words they couldn’t quite get out. I knew. I said it for them. “It’s cancer, it’s in the brainstem, isn’t it?” “Yes”. I had thought my heart couldn’t take it, but instead it turned into a dream. Everything turned into a dream from that point forward. You can still pinch me- I’m hoping I’ll wake up.
They said they ordered an ambulance to take Daniel to Childrens Hospital Los Angeles. His father driving behind, I rode in the ambulance with Daniel while the still silent world slept, oblivious to our despair. The blackness of the night enveloped us on this long journey into darkness. That night began our two weeks stay at Children’s Hospital. The crying was pretty frequent in the beginning. It will continue to come and go with me you know. Sometimes I’ll sound strong, but I’m not quite there yet.
That Monday they repeated a more in-depth MRI as their machines are stronger and their neurologists wanted to analyze the tumor. They confirmed the findings, an inoperable “Brainstem Glioma,” and decided the best action would be a biopsy since the presentation seemed a little “atypical”. Atypical is good when dealing with a monster. Oh, I had another hope. It wasn’t a virus, but maybe “atypical” means it wasn’t really a bad cancer, right? Maybe it wasn’t even cancer at all? I held out hope again. Getting used to waiting by now, and hoping too, the biopsy would finally come the next Monday.
Strong Daniel. He was back there for that surgery for five hours. When he awoke, we could see some effects from the biopsy. But he awoke, so that was good. He lost some additional use of his left eye, mouth, side of face, and left ear. The tumor is pressing against his cranial nerves. Worse yet, it is intertwined throughout the pons/ medulla, the brain area vital to basic life functions. He slept on and off for days.
After recovering in the ICU, we were moved to one of the shared rooms on the oncology floor. I heard the baby behind the curtain receiving chemotherapy, “owie, no more, owie mommy, no more.” The mom was so strong and brave. Daniel is sleeping next to me with this unwanted life stealer in his head as the sounds of heartache overwhelm me. This surely is Hell on earth.
But I am thankful that this is the closest we will ever get. Childhood cancer reminds us that we are born with the curse of sin and we are all in need of a Savior. We will all face our Maker and we are so thankful Daniel is right with God because he trusted in Jesus for deliverance from sin. Daniel has already been saved and has the assurance of eternal life with our Lord and Savior.
After the neurosurgeon removes a biopsy fragment, the pathologist quickly analyzes to see if there is adequate material confirmed. The neurosurgeon was pleased to report that they picked up a viable sample. Me, not so much, because it means they really got tumor. The MRI scan wasn’t misleading. It was real. One more hope shot down. Ok, but one more time. Maybe it’s not a bad one, right? I guess I should have known by then. As the old adage goes, “three strikes...”
Daniel finally grew strong enough to be discharged from the hospital. That was hard. I liked staying at the hospital because then I could just feel like it was one long dream. But once we left and went out into the world, now we had to face reality. And this was our new reality-
Our life is Cancer.
And a brutal one. The pathology report came back….
There is a new opportunity to be able to bless the Orr family and that is through the Meal Train that is linked through Daniel's CaringBridge page. You can access this by going to the top of Daniel's page and tapping on the icon of the heart with the hand,which also says Ways to Help. After doing that you will be led to a page that will show Meal Train. It should give an option to push a link that says, Visit Daniel's Meal Train. This will lead you directly to the Orr's meal train and give you the current ways in which to bless them.
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