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!!!  

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