Monday, April 27, 2015

First of many....

Elijah had his first outpatient eye exam this past week. I decided to bring Emma with me since her birthday is coming up and it would give us a chance to spend some time together, as well as allow her to see Children's Hospital (CHLA).

Emma, Elijah and I set out on Wednesday afternoon. We would be staying at the Ronald McDonald house since we did not have an exact time for the eye exam on Thursday.

Wednesday afternoon the hospital called to say that we were first in the line up since Elijah is the youngest patient.  I was to wake him at 4am for his last feeding, and we needed to check in at pre-op by 6am.

We stopped at BJ's Restaurant for a yummy dinner:
And then arrived at 7:45pm to check-in (you have to check in by 8pm!!).

We got checked in and settled, and got to bed by about 9:30pm.

Just after midnight, we were awakened by a LOUD noise accompanied by flashing BRIGHT lights.  The fire alarm!  We rushed to get shoes on, I grabbed Elijah, and out to the street we went.

Fortunately, it was a false alarm. Out in the street, I saw a woman and her daughter that I had met previously in the hematology/oncology department. The 14 year old girl has a reoccurrence of brain cancer. She is a sweet young lady who seemed to really enjoy Emma. 

We finally got back to the room and got everyone settled in. Soon it was time for me to feed Elijah, and then time for us to get up for the day. Emma, Elijah and I headed out and walked into the hospital just after 5:30am.

After Elijah was checked in, we were told that his exam wouldn't actually begin until 8:30am. I told Emma that you do a lot of waiting at the hospital.

They finally took Elijah back and Emma and I looked at the food magazines I had purchased just for the trip. We had Cliff bar snacks as well, since we didn't have any breakfast.  

Dr. Kim came in and said that Elijah's left eye looked great!!!! No tumors!!!!!
They had a hard time getting enough blood for the genetic testing-but hopefully it was enough. The genetic testing will determine his exam schedule. If the test is positive, he will have these exams (considered outpatient surgery, so the copays add up FAST!) every 4-6 weeks until he is 3 years old.
If the genetic test is negative, I believe his exams will be every 4-6 weeks for the first year, then they will slow down.

After recovery...
...we decided it was time to eat! We found a great little place in walking distance and enjoyed an amazing breakfast:

We are so thankful for the good news from Elijah's first exam-the first of many. :)

Monday, April 13, 2015

The Dark of Night

I feel like I've done pretty well staying away from the what-if's... I try to discipline my mind and stick to what is true and in front of me.

But Tuesday night, the night Ezra was admitted at CHLA, was a dark night. We were pretty exhausted. I had already been running around with all kinds of appointments, and all I had to go on was:
Ezra's lymph nodes were REALLY swollen
He didn't have a high fever of any kind, or a sore throat at all (which would normally be present with a bacterial OR a viral infection)
His lumps didn't hurt and weren't tender
We hadn't been around cats or any other animals for that matter
No one else in our home was showing any symptoms of sickness
Six days of antibiotics had made no difference

It probably didn't help that at the emergency room check in station, they asked, "So why is he here?" 
And as I turned to show them his neck they all said in shock, "Oh!"
And then, the nurse brought in a nursing student and said, "Is it okay if she comes and feels his lymph nodes? We don't really see this very often...."

And, I know I am not a radiologist, but I saw the CT scan pictures and all I could see was his neck and then two or three white masses...with no one to interpret for me.

So, as I finally laid my head down on the pillow that night, the temptation came. "What if I have two kids with cancer?  Is that even possible??"

I literally had to sit there and tell myself: you can NOT diagnose lymphoma with a CT scan.  I know this. I read this. So, those white spots cannot automatically mean anything super bad....

It's funny how things seem more scary in the night. That night was the hardest moment so far. That was definitely an "I can't do this moment."  But. There are some times, some moments, when all you can do is hang on. You can't fathom what is on the other side of it all, and you don't even know if you'll make it to the other side. But you hang on.

I had been hanging on. But that night, the Lord reminded me that even when I am empty, and I don't think I can hang on for one more second....
Well. Even then, He is hanging on to me.

"Weeping may endure for a night, But joy comes in the morning." (Psalms 30:5 NKJV)

Ezra, by the way, is doing much better and on his way back to his "usual" self.;-)

Evelyn Hope....

Dear Evelyn,
     Happy birthday, my sweet girl! My, how you have turned the whole house upside down with your sweet and your spice.  You are talking SO much.  Today, we celebrated your birthday with:
Homemade (ish) donuts
Fun at the zoo:
And dinner at Grandma and Grandpa's:

     At two years old, you speak in mostly sentences....although I don't always catch every word. 
     You are pretty vocal about your likes and dislikes. 
     You love books already, and you even love looking at your "Bible."  You prefer to "hold hand" when we pray, even at dinner time.
     Your name, Evelyn Hope, means "long-awaited hope." We waited for you, for quite some time (especially Emma-it took her 10 years to get a sister!). There is so, so much joy in having another girl in our home. But I think this year, your name is more meaningful than ever. There is a hope that is truer and greater than any we will ever know on this earth. It is the hope of heaven, of being with our Savior, face to face with the Father, fullness of joy, healing of hurts and hearts and bodies and more death, no more cancer, no more crying.  Oh is my prayer that you would know this hope, and that you would cling to it. I pray that you would know the Rescuer who created you, and that your joy would find it's completeness in Him. Dance, laugh, and sing baby girl....and do it all as one who knows the Hope she has no matter what hard things come.  Our Hope is sure, and it is worth the wait.
Love always,

"Once you were alienated from God and were enemies in your minds because of your evil behavior. But now he has reconciled you by Christ’s physical body through death to present you holy in his sight, without blemish and free from accusation— if you continue in your faith, established and firm, and do not move from the hope held out in the gospel..."(Colossians 1:21-23 NIV)

Friday, April 10, 2015

Busy Days: Easter, Ezra, and an Update on Elijah

"It was a great responsibility taking care of so many ducklings, and it kept them very busy." 
-a favorite quote of mine by Robert McCloskey

Easter was wonderful. We read "Amon's Adventure" (a great resource to read in preparation for Easter; a cousin of the Jotham's Journey Christmas series), we did our Passover Seder (although I'm quite sure that our version isn't exactly authentic.....), and had a wonderful lunch with family.

Tuesday....we were admitted to Children's Hospital in LA for the second time in three weeks. This time, it was for Ezra.  When people ask why, we say "swollen and infected lymph nodes."  A picture is worth more than words here-we aren't talking the swollen glands when you're sick type of deal:

We had already taken Ezra to the pediatrician and he had been on antibiotics for...five days. They referred him to an ENT (Ear, Nose, Throat specialist) who switched his antibiotic and ordered a CT scan. The ENT said if was doing poorly, to bring him in.
I had outpatient appointments scheduled for Elijah at CHLA on Tuesday and Wednesday and was scheduled to stay at the Ronald McDonald house.  I left early Tuesday morning and headed down. By the time I pulled into the parking garage, I had a text from Ambree saying that Ezra had a fever of 101.1 and was just laying on the couch.
(He had been having low grade fevers each day, but not all day, and never had he broken 101. Since this was the sixth day of fever, it was higher, and he was on antibiotics....) Ben and I decided we needed to bring him in. And, since I was already at CHLA, we really felt it would be the best place for him if he needed special care.

Now, they didn't say this....but look at the pictures. I think everyone figured we needed to rule out lymphoma. The swollen nodes were not responding to antibiotics, and the low grade persistent fever was troubling as well.  Ben brought Ezra and we checked in at the ER. And then waited. A lot. 

We ended up waiting in the same chairs we had waited in outside Elijah's MRI. The same chairs where they told us about his tumor.

Anyhow. Ben was going to grab good for us, but when we checked with the nurses station they told us that Ezra would be next and that they didn't want him to eat.

Bottom line....after two nights in the hospital, they are not entirely sure what's going on. Ezra has tested negative for strep and mono.  However, a later test showed up positive for mono. (Which is a virus!). However, they still have him on some pretty strong antibiotics.
The CT Scan didn't show any abscesses, so that is good. (It did show one of his lymph nodes to be 5cm!! That's big!!)
So basically, he is to continue on the antibiotics and we will check back on him in 10 days to see if any of the swelling has gone down in his lymph nodes. 
Now, at this point, I would probably still have been pretty concerned about Ezra and the possibility of Lymphoma. However, the night before we were discharged, Ben (who had gone home Wednesday to be with the kids and go to work) texted me a picture of Emma, who felt like her neck was swelling a bit. On one side. And it was! Now, it didn't look like Ezra's! But it was enough to make me think virus-since before this, no one else had been sick. Emma doesn't really have any other symptoms...
And Ezra is behaving pretty close to normal.
So for now....we are excited to be home and thankful for Ezra feeling pretty well. We will keep our eyes on him....but we usually do. ;-p

And ELIJAH!!! He saw Dr. Kim, who said the healing of his eye is going well. He has a silicone implant in his socket, and will be fit for a prosthetic eye in about a month.
As he was literally walking out the door of the exam room, he popped his head back in and said, "I JUST got the pathology report back. Give me a minute."
This is totally an answer to prayer, as we were really hoping to have the pathology report back. AND. It was favorable!!! Meaning, the cancer cells were contained in the eye that was removed and he DOES NOT NEED CHEMO!!!!!! YAY!!!!!!

Luckily, Ben was there Wednesday morning so that I could take Elijah to his other appointment. Blood draw. Then we met with the hematology/oncology doctor.  I almost could have just thought that something traumatic happened to Elijah's eye....except that the follow-up visits to this department remind me that it is cancer we were/are dealing with.
Because of Elijah's age and the rapid growth of the tumor, his eye is at much higher risk for developing tumors. He will have exams every 4-6 weeks to make sure no tumors develop.
The genetic testing won't come back for two months. It will tell us if he is "at risk" for other cancers. If he does have the gene, he has a 50% chance of passing retinoblastoma on to his offspring. (So we are praying he doesn't!!!)

It has been some busy days.
We are SO thankful to be home, with ALL of our little people. Lots of appointments ahead. But we will just take one day at a time. :-)

Thank you all SO much for praying!!!  

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)