In the midst of radiation…

Things are going alright with radiation – there are some minor side effects which are immediate, like a darkening of the skin where he gets radiated (hey, people PAY for that normally), and throwing up sometimes. His appetite is going down, and this morning he actually had to have his treatment cancelled for the day and get platelets instead – radiation messes with your body. Treatment should resume in the morning or on Thursday, with an extra day or two tacked on the end to make up.

We’re going ahead with the 3F8 treatment (I’m pretty sure we always were, I was just trying to stress the severity of it and the difficulty of the decisions we keep getting handed…) which will start roughly 3 weeks after the radiation is finished. We will have 5-6 treatments most likely, which are a week in the hospital (well, 4-6 days), then 3 weeks home. Once that’s over we’re pretty much done with intense treatment.

The numbers for neuroblastoma are encouraging and discouraging at the same time. They are continually on the rise, although current survival rates without future “events” (read: getting cancer again, whether neuroblastoma or a secondary cancer like leukemia – which can be CAUSED by the treatment for neuroblastoma) is 55-60%.

This obviously still gives us a cup more full than empty, but it can be a number that wears on you. Leukemia (firsthand, not as a secondary cancer) has a 96% survival rate without event, for instance. It’s a strange struggle, the thoughts and faith involved with this. On one hand, my faith in God to heal and protect my sons is stronger than ever – but my definition of it is changing. People often say to me – God always heals! Which I believe – but I also know that it’s not always the way you or I picture it. Robyn and I know that full well after the last 9 months. We have gained and lost more since October than in our entire lives. I find it hard to imagine how Abraham made the decision to obey God when he asked him to give Issac to Him. There’s a smallness you feel in these moments. Despite any talent, achievement, knowledge, dollar, or connection I may have – the lives of my family and children are not in my hands. Robyn’s and mine tears and prayer may translate to an eternal life for our sons, but it doesn’t guarantee this one. It’s a deep realization – hard to feel, but rings true. I know in my heart the former is the obvious greater than… but whew, that’s some chewy thought.

If you want to get a sense of God’s hugeness and our smallness, read Job 38-41. It’s an intense depiction of the vastness of God and our inability to even comprehend the fullness of His plans for us. God lays out an awesome description of Himself for pages and pages, telling Job he cannot begin to grasp the reason for some things, and this doesn’t negate God’s unchanging character and continuing promises. Talk about instilling awe.

Here’s a bit of it:
34″Can you lift up your voice to the clouds,
So that an (abundance of water will cover you?
35″Can you send forth lightnings that they may go
And say to you, ‘Here we are’?
36″Who has put wisdom in the innermost being
Or given understanding to the mind?
37″Who can count the clouds by wisdom,
Or tip the water jars of the heavens,
38When the dust hardens into a mass
And the clods stick together?
39″Can you hunt the prey for the lion,
Or satisfy the appetite of the young lions,
40When they crouch in their dens
And lie in wait in their lair?
41″Who prepares for the raven its nourishment
When its young cry to God
And wander about without food?

That’s just some of the literally chapters of it. My point being this – faith in God is not being sure He will grant wishes. Faith in God is being confident in who He is. Understanding the promises given from Him to us. We forget sometimes in order for God to deliver Daniel from the lions, Daniel had to be in a pit of lions. 😉 In order for God to save ALL His sons and daughters, He had to lose His ONLY son.

Charley and Ezra are both doing very well – each is responding to treatments better than doctors expected, and the future looks good for both of them. Robyn is at All Children’s right now spending some time with Charley, and she just texted me he is completely off his vapotherm (a strong oxygen source), and is down to very minimal basic oxygen being given to him. He should be 100% breathing without support soon. He is learning to eat and tearing through milk like a [insert something that tears through milk very fast]. We’re tired still, and we will be for a while. Our faith is becoming much less based on what God /does/ for us, and much heavier on who He /is/.

to 3F8, or not to 3F8…

This morning Ezra started his radiation therapy. The first of 20 early morning radiation sessions under anesthesia went alright – he puked up all his bottle the minute he finished it once we were home, but was able to hold down oatmeal. It’s going to be a long month…

We spoke with Dr. Wynn, one of our oncologists at St Joseph’s this morning about 3F8, the treatment option we’ve been mentioning throughout this adventure. If you’re interested in reading about it – you should check out this article: Here’s some interesting info from that doc:

“A person’s immune system makes antibodies to attack germs such as bacteria or viruses, but it will not attack neuroblastoma because the tumor is part of our own bodies. An antibody that attaches to neuroblastoma can be made in a laboratory and then given intravenously to a patient. This antibody will circulate in the bloodstream until it finds and attaches to a neuroblastoma cell. And then the patient’s own immune system will attack and kill that neuroblastoma cell…

When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient’s own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient’s immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them. The treatment is effective even when a patient’s immune system has been weakened by chemotherapy treatments because chemotherapy does not affect the part of the immune system that responds to 3F8 antibodies. Over time, as the body’s immune system becomes stronger, 3F8 treatments may help the body learn to fight tumors on its own.

Pain is the main side effect. All patients have pain. The second most common side effect is rash (hives with itching), which is an allergic reaction. Pain can lead to a fast pulse (rapid heart rate) and sometimes causes high blood pressure for a short period. Less-common side effects include fever, vomiting, and diarrhea.”

The treatment is very hard on a kid. It’d be five separate 4-5 day inpatient (admitted to the hospital) sessions, the first of which would begin 10-14 days from today. We’re most likely going to do the treatment, but it is a hard decision. Patients who get 3F8 are 20% less likely to have their neuroblastoma recur, which is a very large number in the high-risk stage 4 cases like Ezra is. But 3F8 is also painful, dangerous, and has hard side effects which can occur (short term, not long). These include anaphylactic shock, extremely low blood pressure, and a few others. It’s a few days shorter than the transplant was, and spread out which is easier on a schedule, but it’s a harder treatment.

Basically – though we’re nearing a sunrise in the evening of this ordeal, the warmth is still only a promise, not a reality. We’re like Rocky – he has a strong belief tomorrow he’ll be the victor and able to relax with Adrian, but he also knows he’s going to get the crap beat out of him tonight. That’s how we feel.

We continue to find rest in our faith and know God will work all this together for good. We know He’s holding the situation secure and we know this will be a memory – and not a constant – sometime here in the future. We used the slight break we had when we came home from stem cell transplant to grab some much needed “normal life,” and it’s a little hard remembering now it’s not the norm yet – there’s still rough patches ahead.


We met with the radiologist today to get the next part of Ezra’s treatment scheduled.

Radiation should be starting at 42 days after transplant – which is today. So we’re going in tomorrow to get him measured and start the radiation. It’s very precise positioning – it is multiple direct rays which hit specific areas in Ezra’s body (where the tumor was removed). Since the tumor was so close to the spine, Ezra will have to get anesthesia for every treatment of radiation. Oh – and it’ll be twenty sessions. Which start at 7am, Monday – Friday. So a month from now we should be finished with radiation. And i was jussssst starting to get into being home…

Because he needs anesthesia each time, the appointments will be longer than for an adult. Adults go in, sit down, and head out to work after. Its extremely important the patient is super still, so kids wind up having 4 hour appointments instead – get anesthesia, get radiation, spend an hour or two waking up from it.

He normally wakes up at 930 or 10am, so he’ll be a bit whiny during the day from the lack of sleep – hopefully the sedation will give him some rest. He cant have breakfast until after every appointment, since you cant eat before getting anasthesia.

Waking up at 530 for the next month!

After the radiation, the drs wait 2-4 weeks then do scans, and THOSE scans will determine if he’s announced in remission or not. We’re hoping that will be before Ezra’s birthday on August 31st – which may or may not happen. It won’t be long after if not though. The next step would be 3F8, a new(er) treatment called a monoclonal antibody which will significantly lessen his chance of relapse. We’re not sure on the treatment schedule on that, but it looks like 6 treatments which are a few days each. That will be the last of his major treatment.

Charley is doing awesome – rocking along, needing less and less oxygen, and weighs 8 pounds 12 oz now!!!! Everything is looking good now so he’ll prob be home in the next 4-6 weeks. Gonna have two kids home soon!