Wednesday, April 01, 2015

The Whirlwind, The Fire, and the Still, Small Voice: Elijah's Story

Sometimes life goes at a pace such as though you feel you can barely keep up!
In the 8 weeks of Elijah's life, they suspected a heart murmur (which turned out to be normal!), my tooth infection returned and I had to have oral surgery, and Caleb knocked out his front (adult, permanent) tooth.  Between all the appointments, we were all just sort of hanging on one day at a time....

I remember when Elijah was 2 weeks old, standing in a room with his pediatrician, telling him, "He doesn't seem to be making eye contact. He isn't tracking even small movements..." The pediatrician assured me that this was normal for his age. And it may be. But it didn't seem normal for our kids.  It was then that we began to be mildly concerned that Elijah couldn't see.

When Elijah was about 3-4 weeks old, Ben noticed that at a certain angle of light, it seemed as if he could look into Elijah's eye.  He thought it was pretty cool! In the next couple of weeks, the kids and I noticed it as well, and we seemed to be able to notice it more frequently.  I began to research everything I could, but wasn't coming up with much. I did, however, see an interesting article about how pictures of your child with flash photography can warn you of some very dangerous conditions. So, just before his 7th week of life, I took pictures of Elijah with flash. Immediately, we saw that while his left eye showed "red eye" (which means that the retina was reflecting light unobstructed), the right eye was not.

We made an appointment with our pediatrician, and they squeezed us in with a doctor we hadn't seen before. It was about a five minute appointment-as soon as I reported the flash photography findings, she said she would be referring us to an opthalmologist.  They gave me a card for a place in Ventura-they would get us in in a few weeks. There was a definite sense of urgency so I pushed for him to be seen sooner. The best they could do was a week out, but the receptionist almost casually mentioned, "We don't actually have a pediatric opthalmologist....just an opthalmologist who sees kids. She is only in once a week."  I made the appointment, but got to work that evening looking up all pediatric opthalmologists within a 100 mile radius who were providers for our insurance. When Children's Hospital L.A. came up, I knew it was the right place. They even had a vision center!! I started the process of getting a referral and an appointment.

At this point, I realized that my research wasn't leading me anywhere. I thought, "Maybe the way I'm describing things is not how other people would describe them?" I kept reading things about "the glow."  These articles would reference mainly two causes of a whitish-yellow appearance to the eye. One was Coat's Disease (a rare situation in which leaking blood vessels cause the retina to detach), and a very rare childhood cancer called Retinoblastoma.

We were scheduled for an appointment at Children's Hospital, and now we just needed to wait. :) During that week, we felt that the situation was getting worse, fairly quickly. Thursday evening of Elijah's 7th week of life, the flash photography pictures now showed one eye reflecting red, and one eye showing whitish-yellow. This looked more like the "glow" I had read about. I also noticed what seemed to be some "bulging" of that right eye-as if there was more pressure there.
(I realize this is not a flattering picture of Elijah-but it was the best I got with the flash and the "glow").

On the way to our homeschool co-op on Friday, I let my mind drift on the drive down. Should I push for Elijah to be seen? What if this was really serious??
Almost instantly, the Lord brought to mind a familiar passage:

            "Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me..."
                                      Psalm 23:4

Clearly, the still small voice of the Lord cautioned me: Do NOT go down any dark valleys that I have not called you to. IF I call you to walk down a dark valley, I will go with you. But if you walk down valleys of worry and fear, I am not there because I have not led you there!

Quickly, I was able to just worship and rest, and enjoy our day at co-op, although I did ask for prayer. And my prayer request was quite clear, although it didn't really make sense at the time: Please pray that Ben and I will have wisdom to make decisions on Elijah's behalf.
(This is what we were seeing in Elijah's eye. It was like we could see into it. But it wasn't like this all the time. It was only in certain light or angles. This is in the ER with his pupils dilated)

Before I headed home, Ben and I had a brief exchange about possibly taking Elijah down to Children's Hospital Emergency Room.  We decided to think about it.  As I drove home, the Lord literally played out in my mind the coming events. I knew we would head down to Children's. I knew my mom was going to come and watch the kids, and then Ambree would come and relieve her and stay with the kids. I knew I needed to come home and pack a bag.  As I came home, I called the Vision Center at Children's, and they confirmed that I should bring him in. And then, it was literally as if I just walked in the steps that were already laid out for me. Call Ben. Pack a bag. Call my mom. Call Ambree. Feed the baby. And GO!

We were quickly seen at the ER, and told we were being admitted to the hospital. Looking back, there were a lot of clues, but we had not been given a diagnosis of any kind....
They told us that Dr. Kim would be doing an eye exam on Elijah the next day (google revealed that Dr. Kim is the Director of the Retinoblastoma program at CHLA). They also said we would be staying on the 4th floor....Oncology (They told us it didn't mean he had cancer).

Saturday, they got Elijah in for an MRI, with an eye exam (both under general anesthesia) to follow.  During the MRI, Ben and I sat outside the room waiting, and then saw Dr. Kim go in. After about 15 minutes he came out and introduced himself.

As he sat down, he said the words we knew, but hoped were not, coming.
This is cancer. (Retinoblastoma)
There is a tumor.
It is very large.
It will be confirmed during the exam, but you should be prepared that we may need to remove his eye.

Deep breaths. Trying to process all that quickly. Elijah came out of anesthesia, and we went back to the room only to head straight to pre-op for his eye exam. They took him in and about 40 minutes later the doctor came out.
They rate tumors from Stage A to Stage E. (E being that the tumor was taking up at least 1/2 of the eye). Elijah's tumor was taking up 2/3 of his right eye.  He did not have any vision in the eye. The doctor said that even two more weeks and the cancer would have spread. But we have a shot to cure him, by taking out the eye.
Within 2 hours of first hearing that this was a tumor, his eye is out.
I broke down in tears....I told Ben, "I don't doubt our decision. I don't doubt God's goodness! But it's still just so sad..."
(He is still so absolutely adorable!!!)

So. Now, we wait. We appreciate your prayers in the days ahead. Here are some specific requests:
Elijah will have genetic testing to determine if the mutation which allowed tumors to grow in his eye are present elsewhere in his body. (We pray it isn't!!!)
Elijah's eye was sent to pathology-this will determine if he needs chemo. (We pray he doesn't!!!)
Elijah's left eye will be watched closely to make sure no tumors develop. (We pray they don't! We are praying for a healthy left eye that will have vision)

And our greatest that we, as a family, would walk worthy of the calling we have received. That Christ would be glorified.

Oh Lord, may we fix our eyes on what is unseen....because that is what is eternal and lasting.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18 NIV)


Anonymous said...

So sorry for this difficult time you are going through. My heart hurts for you guys. May your faith be a powerful witness to all who know you and to those you meet along this journey. Praying for God's love and peace to cover you and Ben, and the whole family. I know God will guide your every step and give you wisdom for each decision. Love you. --Susan Harrell

Anonymous said...

Praying for your beautiful little boy. I also live in the Ventura area, and my family is very familiar with CHLA. My 21 month old has a lot of medical problems and has spent several months down there. She continues to see many of her specialists at CHLA about once a month. God bless you and your family, especially little Elijah.