A Good Week

Felix 10 weeks

Felix has been doing pretty dang good this week.

All of his test results and the numbers on his monitors have been positive. CMV counts are down, lymphocyte counts are up, his temperature is down, his oxygen saturation is up, his heart rate and breathing are down, etc.

But more importantly, he’s looking and behaving healthier.

His mucousy cough — that he’s had since he was a week old — is completely gone. His breathing is so improved that he’s been taken off of oxygen, which he’s been on since he was admitted at the hospital eight weeks ago. No more prongs in his nose! He’s got more energy to cry and complain, and when he does, his voice is strong and piercing rather than weak and raspy. He’s got energy to kick his arms and legs and even drink from a bottle a little here and there. He loves to be held and to look around. And he’s starting to smile.

The enzyme injections are working. They are helping his body to build up lymphocytes so that he can fight off infection.

We’re becoming cautiously optimistic. If things continue to go well, we might be able to take him home in a month or so. We want to start working on feeding him orally again, and we’re starting occupational therapy to encourage his development (he’s lagging a bit due to chronic hospitalization. All the doctors tell me not to worry.)

When we get good news our doctors dance and chatter and jump around. Ben and I smile quietly and hold hands. I can’t let myself get too excited. We still have a long, scary, risky road ahead of us.

This is not even close to the end of treatment. Enzyme replacement is buying us time. It is typically only effective for a year or two. Ultimately, he still needs to go through gene therapy (which is what we’re gunning for) or a bone marrow transplant as a long-term solution. They’re both risky procedures with uncertain outcomes. And both require him to remain in isolation for at least six months (possibly two years) afterwards as he recovers. And we don’t even have a spot for gene therapy.

But some nights I go to bed and don’t feel sick with worry. That’s something.

Conversations about (Felix’s) Life and Death

Felix 8 weeks

Last week was a rough one.

Felix developed a fever one night, which always gets the pediatric team scrambling. He underwent a series of tests (AGAIN) until it was discovered that Felix has CMV (cytomegalovirus).

CMV is an incredibly common and widespread type of herpes virus that almost all of us have in our bodies without even knowing it. Once you have it, it’s there for life. It’s pretty harmless in normal, healthy people, but can be devastating to immune-compromised individuals – it is one of the leading causes of death among SCID babies.

The infectious diseases doctors leading Felix’s care took us to the Quiet Room to deliver the news. “This is a game-changer,” they told us. We had to prepare for the possibility of losing Felix in the next week or two. If the CMV attacked any of his organs he would have almost no chance of recovery. Long-term treatment (i.e. gene therapy or bone marrow transplant) was suddenly much riskier.

The doctors immediately began to treat Felix with intense intravenous antiviral medicine to combat the virus. On top of everything else he’s already getting.

Our doctors arranged a meeting for us with a nurse practitioner who deals with end-of-life care. We discussed the steps we would take if Felix suddenly started to deteriorate and he reached a point where recovery was unlikely – we determined at which point we would stop active care and start palliative care.

These are exhausting conversations to have.

It’s been over a week since his fever, though, and he has not deteriorated. In fact, he has improved quite significantly. His temperature is down, he has more energy, and he’s starting to gain weight again.

Whereas our doctor had initially been losing sleep, thinking we’d all but lost him, she is now feeling very hopeful that we managed to start treatment in time and he has a chance of making it to gene therapy in reasonable health after all. If treatment is successful, the CMV would cease to be a threat to his life. (This is possibly years down the road, though.)

All of this does mean Felix will have to keep getting IV treatment for the long haul, so he’ll be getting a PICC line inserted this week (rather than constant scalp IV’s). This is both bad and good: it’s a sign that he’s much more ill and vulnerable than we’d already thought; but it will be much better for him than those lousy, delicate IV’s.

So our week was an emotional tug-of-war between hope and grief. Maybe he’ll be okay. Maybe we’ll be saying goodbye to him before this year is over. I’m trying to be at peace with either possibility. Either way, he’s enveloped in love.

And Ben is pretty sure Felix smiled at him for the first time last night. That’s something to hang onto.

(Update: since I wrote this a few days ago, Felix has only continued to improve. His blood CMV counts have been reduced by half in a matter of days. The enzyme injections seem to be working as well — his lymphocyte counts are almost at normal levels [lymphocytes are the infection-fighting cells he can’t make on his own]. His lungs are clearing up, he’s more alert and interactive, and he’s even starting to suck again — something I was afraid he’d never do again. Thank you so much for your constant prayers!)

Q: When is it Appropriate to Share Your Faith?

A: When they ask.

The other day I experienced THE WORST, most inappropriate example of proselytizing I have ever witnessed. (Evangelical pun not intended.)

I was sitting in a hospital waiting room, weeping over some bad news about my ill infant son, when someone I love decided to bring up the long and narrow path versus the short and wide path, and the importance of choosing the right one.

It kind of blows my mind that any human being would need to be told that this was the wrong moment to preach at another human being, but apparently it’s not that obvious to everyone in the world.

Knowing that Ben and I are Bible-believing, church-attending Christians ourselves, you might be surprised to learn just how often we are actually “witnessed” to. For being the wrong kind of Christian. For attending the wrong kind of church. For reading the wrong translation of the Bible. I swear to you, it is a fairly common occurrence. If you are not a person of faith, you might be surprised to find that you are not the only one who gets preached at. And still always jarring and slightly bewildering every time it happens.

Sometimes it comes from a stranger at the door in the middle of a busy afternoon. Sometimes it’s from a loved one during a carpool to an event.

The one thing all of these wildly terrible acts of “witnessing” have in common is problematic timing. That and a lack of respect for our own spiritual experiences and beliefs.

The thing is, Ben and I love talking theology. We appreciate having our beliefs questioned and tested in respectful dialogue. We enjoy being exposed to different ways of thinking. We would genuinely love to hear your perspective on religious matters.

But there is a time and a place for that stuff. And if you’re wondering when that time is, I’ll make it easy for you: I’ll initiate the conversation. I’ll ask you about your beliefs. (And tip number two: It’s NOT when I’m grieving my sick baby’s diagnosis.)

If you’re someone who is passionate about sharing your faith (and that’s awesome if you are – I’m so glad you’ve experienced such love and hope in your faith that you want to share it with others!) I think this is a good rule of thumb to live by: Share your faith (verbally) when someone asks about it.

(I’ve written about this subject before, from when I used to be a really active and vocal witness for Christ.)

Otherwise, please stick to sharing your faith by your actions and attitude.

“Lighthouses don’t go running all over an island looking for boats to save."

Show them the love of Jesus through your generosity and kindness. Be helpful. Volunteer. Listen. Smile. Hug when appropriate.

Show them the power of the cross by your courage. Stand up against meanness and injustice. Defend the weak and helpless.

And when someone inevitably asks you why you do the things you do, go ahead and tell them. The timing will be right, and they’ll actually be able to hear what you’re saying.

Instead of wanting to punch you in the ovaries.

**(Updated to clarify: I’m mostly referring to questions of salvation. By all means, if you feel you have words of comfort from your faith that are appropriate to the situation, consider sharing them. But please don’t try converting anyone during a sensitive time.)**