Waiting for Our Christmas Miracle

On the way to the hospital last week, I asked Jared, “What’s your guess? Surgery or no surgery?”

My guess was no surgery because last time the doctor said that if there’s no improvement, he was indeed going to do a surgery; however, he also seems to change his mind a lot based on the treatments and second opinions we’ve been getting. I always seem to get the guess wrong so even though my natural inclination was to go for “surgery,” I decided to go with the opposite and guess “no surgery.”

I was wrong… again.

Max is booked in for surgery on January 25. Unless there is marked improvement between now and then, he will be having surgery on two sites on his face and neck.

My favourite nurse knowingly looked at me and said, “Don’t worry – we have lots of treatments to minimise scarring.” (Shallow thoughts, I know, especially in light of the fact that this surgery could leave him paralysed in his face, but how did she know they were swimming through my mind? I love her. She has been my grace from the first day I turned up in the office throwing up.)

In some ways, I feel moments of fear or discouragement. In other ways, I know that we still have nearly two months for a Christmas miracle.

So as my belly grows and we await our little girl miracle in just 10 short weeks, we also continue to pray for a miracle for our happy little boy and the smile the puts a spring in our steps every day.

PS – thanks to our friend Tiffany from Red Owl Photography for the photos she took while she was visiting. If you’re in the Bend, OR area (or not… she travels a lot and I’m sure she wouldn’t mind some extra cash if she’s in your area!!), chat to her. She is a natural with kids. I’ve known her for a long time now and never known a kid who didn’t adore her. These just happened to come from a few moments hanging out in our living room.

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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...

Our Hospital Adventure Day 1

Well, day one at the hospital down and we already have one nurse joining us in PNG!! (grin)

Our pre-op consultation must’ve went well because we found ourselves with an operation yesterday!

We were really impressed with the promptness and professional approach of the paediatric surgeon. He wasn’t doing procedures that day but he rang the surgeon on call straight away, brought him down into the clinic and asked him to do whatever he could to make Max’s procedure happen that day.

It feels so affirming to have them acting so quick on our boy’s behalf!!

If we hadn’t been feeling well looked after enough, we became hospital super stars when he started asking Dr House-esque questions to find any possible source of the mystery on Max’s neck – do we have any birds? fish? cats?

Have we travelled overseas…?

Despite the fact that Max’s symptoms started before he ever set foot in a PNG village, the fact that we have been there set all the alarms off and we now have acquaintances in the infectious disease unit. Yep, we’re in an isolation room “just in case.

The good news is, we have had priority everything… AND our own room.

The bad news is, do you know how hard it is to keep a 16 month old contained in a small room where the only feature of the room (aside from the obligatory Children’s Hospital underwater mural) is a window which looks out onto kids (his favourite) playing on the awesomest outdoor play structure (his second favourite). And the fact that the only other thing you can see out the window is the picnic area… with people eating at it… which is absolutely torture for a kid who had to go 8 hours without eating or drinking thanks to an upcoming anesthetic.

With minimal language, he was able to tell us at least three different ways that he wanted to go outside (door, please? out, please? outside, please? out there, please?) At least the kid’s got manners.

He hasn’t had a major break down yet, but I feel one coming as we approach Day 2 in the isolation room.

Pray for grace, please?

Other than that (and reminding us about every 5 minutes that he wanted to eat), Max breezed through his day in the Children’s ward. His highlights are of course watching the flashing lights as he has his heart rate and temperature monitored every hour and playing with the stellar rocking horse Jared brought into his room.

We were relieved just before 3:30 when they breezed into our room and let us know that we needed to get Max ready for surgery. We headed straight in and our happy boy who was entertained by bubbles as they put him under, was equally entertaining to the nurses who were cracking up as he signed “more, please!” over and over to them.

Our prayer was that we would bring life and encouragement to those around and if Jared & I never did, Max certainly has. He’s become a bit of a rock star already.

The procedure went well (Jared & I coped okay too!) and our boy melted our hearts as we saw him laying limply as he was starting to stir coming out from under the general anesthetic. The moment he realised I was there, he started pulling off the oxygen mask to be in my arms. He slept there peacefully and then every few minutes would wake up, look around, and ask for whichever parent was not holding him. He must think we’re the best team ever because he was content as long as he could be held by each of us every 5 minutes or so.

When he finally came around, he downed three bottles of water, braised steak, mashed potatoes, carrots, green beans, and half a packet of ritz crackers… and then went back to playing on his rocking horse so hard that he worked his bandages off.

We’re all pretty tired. Sleeping at a hospital is never really relaxing, especially not when you have to be monitored every hour and have antibiotics intravenously every 3-6 hours.

Day 2 holds the waiting game for us. We were told to give at least 24 hours to wait for pathology results. We’re kind of hoping our rock star infectious disease risk status might bump this up earlier. From there, our consulting surgeon mentioned they would look at treatment options or perhaps removing more of the growth on Max’s neck. (They got out 4cmx5cm of puss plus some more tissue, but there is definitely more in there)

Our prayer today, is for grace for Max to stay in this room alone with us for another day, rest for all of us, and mostly that they doctors would not miss anything as they review the samples in pathology and consider our next step of action.

Thanks for praying with us, celebrating the little victories along the way, and believing for perfect shalom for our boy – nothing missing and nothing broken.

Love,

The Hoovs

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!

Praying for our Maxy Moo

What we thought started as a simple swollen gland has culminated over the past three months to today… when we found out our little boy will be having surgery on Tuesday.

We went through all of the standard procedures way back when we first noticed that little golf ball on the side of his neck… after watching it for a while and trying some home remedies, we talked to a doctor and after two rounds of antibiotics, there was still no improvement.

Blood tests were next and I can’t tell you how sad it was to hold my baby down with another nurse while they took three vials… or how happy it was to hear all was normal.

But after a series of ultrasounds monitoring this little (but kinda big) mystery bulging out of his neck, it has been determined that it is some type of abnormal cyst which needs to be removed… quickly.

Our surgery has been booked for Tuesday morning at 8:30 at Townsville General Hospital.

We’re sad. And we’re grateful.

We’ve been praying for Max to be well and were anticipating another game of hurry up and wait as we were referred to a paediatric surgeon. Although we have been assured all the time, that they are not keen to cut open little kids, all three doctors who have evaluated Max over the past few months are now quite eager to see that lump gone… and to hopefully figure out a little bit more about what it is and how deep it goes as it penetrates further than the ultrasound can see.

It was quite the miracle and clever handling of our family doctor to get Max in to the best paediatric surgeon in town… all through our public health system and at no financial burden to us. It happened in 15 minutes and she is even taking part of her scheduled holiday off to track with our little family over this journey.

Who loves doctors who are not only smart but also compassionate, tenacious and full of faith? We do.

Our job today is to learn how to prepare for pre-op and post-op. Our only indication is that we will be in hospital for 3-4 days but we are eager to confirm that and get a bit more detail.

In the mean time, although underlined with gratefulness, our emotions are sometimes reeling and our mind is tempted to ask some of those scary what ifs… When I woke up this morning at 4am after a bad dream I asked God, “This is not just an average sickness. As a mother, when am I allowed to worry?”

His quick and oh so good yet challenging response?

“Be anxious for NOTHING. But in EVERYTHING… with prayer and thanksgiving… let your requests be made known to ME.”

Okay.

Will you join us in giving thanks?

Thanks for the wisdom that God has given thus far to the doctors. Thanks that Max has been relatively well through all of this. Thanks that Jared & I have one another and so many wonderful friends and family to help us journey (it truly has bonded us in a unique way!) Thanks that the appointment came up so quickly.

And will you join us in making a request?

That Max’s health would continue to be stable leading up to this operation. That they would find everything quickly and it would be far enough away from the major blood vessels, etc, which are dangerously close at the moment. That we would have the wisdom to walk him through this in a way that meets his needs and somehow instills faith in him as well. That we would bring life and gratitude and hope to the many more doctors and nurses we are about to engage with. And that we would continue to walk in the peace that the Father is lavishing on us.