I Hate Buts…

We had a great meeting with our new infectious disease doctor, and yes it feels kind of cool to be able to say we have an infectious disease doctor. I mean, as long as we have to be in a situation like this, might as well feel like we’ve been in the presence of Dr. House, right!?

He was again a wonderful doctor and we were really grateful that he took ample time to answer all of our questions, affirm our parenting, and do his best to empower us to make good decisions.

Our favourite comment he made was that Atypical TB always goes away on its own.

Umm… HELLO!? Why didn’t anyone tell us that earlier!? I guess its because our “Dr. House” happened to be on holiday when we were asked to see him a few weeks ago.

Unfortunately, this was also followed by a but… (I hate buts…) okay, several buts…

  • It may take an indefinite amount of time (possibly into his teenage years…)
  • It may continue to grow & multiply (to the size of a baseball…)
  • And it may start oozing (to drain and heal…)
Everything else we knew he reaffirmed…
  • Surgery is the best treatment option. (Our surgeon wants to avoid that as long as we can do to the risk of paralysis in his face)
  • Antibiotics are really harsh (And he would prefer Max doesn’t continue longer than this month as it is really dangerous for the liver)
So what does this all mean?
  • Max continues to be monitored monthly to determine whether the lumps are growing or multiplying. (The good news is while they haven’t shrunken at all, they don’t appear to be growing or multiplying anymore!)
  • We continue to pray that God heals our little man and a potential paralyzing surgery is not necessary and act on the wisdom He gives us to help him fight this infection.

Happy, Happy, Happy!

That’s what this little man kept saying today as we walked the trails to one of our area’s more secluded beaches.

“Happy! Happy! Happy!”

I smiled and all I could think was, “Me too, kid; me too.”

We’ve had lots of happy news lately. It was the first weekend that I was able to do a full clean on the house (a top to bottom clean and on my own) since getting so sick. I turned a significant corner at the 16 week mark and though I was still puffing a bit on our short hike to a secluded beach today, my fitness is coming back faster than I thought it would after laying flat for so long.

More importantly, we got happy news from Max’s surgeon. We left the hospital with tears on our cheeks after being told we would almost certainly be returning for surgery three weeks ago, but as we prayed we began to think that God is up to something else… something miraculous, maybe?

And so it was last Tuesday that while our favourite nurses teased that maybe we were optimistic parents thinking that perhaps those lumps were getting smaller, the surgeon himself wondered if it was a possibility they were starting to break down. The past week and a half Max has been symptom-free on the meds, so he suggested we keep going for a couple of months and see what happens. He also asked us to meet with the infectious disease doctor who is overseeing Max’s case to confirm, but we are feeling confident that something has changed… that a miracle is happening.

And while we don’t love going to the hospital every week for checkups, we are excited that on Tuesday we will not only be visiting the infectious disease unit; we’ll also get to see our new little baby too! A few more days and I’ll be half way through this pregnancy, and we can barely wait to see if this is the little girl we’ve been suspecting or another precious little boy.

Oh, and in case you wondered, in the midst of our craziness, we’re still doing our work with YWAM. And we’re still loving it. And we’re still seeing lives changed. Stories to come! Good ones.

Happy, Happy, Happy Ones!

We Have A Diagnosis.

We have a diagnosis for Max. What an answer to prayer.

We noticed the new lump on his jaw line growing consistently after our last appointment and happened to be at the hospital so we stopped in to the paediatric clinics. The nurses noticed significant growth as well and booked him in to see the surgeon asap.

On our way into see him last week, Max pointed to his neck and asked, “Ne!? Ne!?” Yes, Max, we’re here to look at your neck… again.

This time, however, instead of pokes, prods, a kind smile and out the door, we got our answer; and while it was one of the scary words we were sort of dreading… hearing them wasn’t as bad as I thought it’d be.

Atypical tuberculosis.

No one suited up in infectious disease rocket suits this time because Atypical TB is not contagious from person to person like the “standard” sort of TB you hear about in prisons or developing nations. Its found in many places and comes from dirt, contaminated water, and certain bird poo… mmm… yummy.

You know how some moms freak out if their kid accidentally eats a bit of dirt? Apparently I should’ve been that mom because that’s probably what happened. Max just happens to be one of the 1 in xxxx number of kids who got the raw end of that deal.

You’re welcome to all our mom and dad friends out there for taking the statistical bullet! 😉 I’m well aware the next time we see your child drop an apple slice on the ground we have lost all authority to say, “Just let him eat it.”

During our long morning at the hospital, we learned that surgery is the best way to get rid of this TB because it is notoriously resistant to drugs.

We also learned that the infection has spread through several glands already (its normally in just 1 or 2) and as we all know, is continuing to grow. The problem is, they seem to be all lined up perfectly right along this long, u-shaped nerve that happens to control the right side of his mouth and the lower right side of his face. The surgeon told us in no uncertain terms that we need to get rid of the infection but that he is not confident he will be able to do it without damaging that nerve, leaving our son paralyzed forever.

We opted to have a go with some really aggressive antibiotics. We were warned they could take quite a toll on his little body, but now several days in, he has only had some sluggishness, fever and diarrhoea – all within the “normal” range of his body growing accustomed to the drugs and closely monitored by our favourite paediatric nurses. Another answer to prayer.

Our hope is obviously that the infection recedes quickly. Our surgeon has warned us that he will most likely recommend surgery if there is not marked improvement in three weeks, as the risk of it spreading and causing more damage is too high.

I won’t lie. Even though we know other parents face much more difficult circumstances, the thought of surgery and potential paralysis was very, very confronting for us. At the same time, as we deal with those emotions before the Lord, He has been so gracious and kind to us, reminding us that it does not matter what Max looks like or what physical abilities or disabilities he may have – his destiny and purpose and value in life remains the same.

He has also reminded us that His heart is that none of us have sickness or suffering. I wonder if sometimes we see it so much junk in this world that we forget its not His ultimate plan or our ultimate future.

All along, God has spoken to us not to worry. As others have begun to pray for us and with us, this seems to be main theme.

And you know what?

We feel wise, aware, sad, grateful, disappointed, compassionate, and so many other things… but we are genuinely not worried. That whole peace that passes all understanding thing really is amazing.

Will you join us in praying for our boy? That his body would continue to accept the drugs well, that the infectious lumps would dissipate completely and that he would be healed and well? Would you pray that we continue to have peace and also the wisdom to know how to care for Max under these unusual circumstances?

And will you thank Jesus with us? For bringing this issue to light? For a surgeon who has speculated this is what it was all along and has made Max a priority as a result? For the kind community that surrounds us and reminds us of truth?

We have a LOT to be grateful for and one sweet little man to care for.

Sweet boy fighting off his fever and just couldn't keep those eyes open...

A Short Update…

Well, it seems there’s been a miscommunication with our doctor and the hospital and Max’s appointment on Tuesday will be a pre-op consultation with the paediatric surgeon at the hospital and we don’t have a surgery date yet.

The good news is, this means that there is still a small possibility that there many a less-evasive option available to us, which we would LOVE.

Just so you know how to pray!! 🙂

We are feeling the love for our boy… thanks so much for standing with our family!