Our Boy Is Healed.

My eyes teared up as I watched a four year old boy crying in his mama’s arms as Max played happily to the tune of the prayers of friends and family around the world. They found a brain tumour last week in the little boy; he had tubes in his noses and his arms and he was done with it all. Over it. “Everybody here is very mean mama. Everyone hurts me. I can’t stay here any more and you can’t make me. There is nothing you can do or say to make me feel better I’m going home.”

My eyes welled up as she bravely held a very articulate little boy, probably wishing she could make it all go away even more than he did, trying to find the words to explain, the courage to lend him, and the strength to keep herself going.

The next morning it was my turn. In the early hours of the morning, after a particularly challenging night when Max spiked a post-surgery fever and was up with blood tests, medication and cranky roommates for more than half of the night, I sent Jared home for a nap and let my little boy take his turn melting down.

He wailed in my arms and every trick I knew didn’t work. He just wanted to go home.

And as sad as that moment made me, my heart welled up with joy. We desire to cultivate a home that is a place of security, of peace, and of the presence of God. And in that moment, as heartbroken as I was, my heart soared because to Max, that’s what our home has become. It felt good to hear it and to know it. A parenting high in the midst of a heartbreaking challenge.

There may have been some tough moments during our time in the hospital, but for every challenge, there were a hundred blessings… at least.

Not the least of which is that our boy is healed.

I prayed God would do a miracle and I remember one moment in the wee hours of the morning, weeks ago when I couldn’t sleep, I heard Him whisper back, “What if I want to use surgery to heal him, Rebekah?”

And it appears that that is what He’s done.

The infection is gone. It was a nasty one, embedded deep and strong and resistant. The team involved were confident that this was the very best course of action.

In addition to this miracle, we saw so many moves of God’s grace along the way… the fact that Max was a near perfect patient. At each shift change the nurse would ask why he hasn’t had more pain medication and the other would say, “He’s been content so we’ve held off.” The wound care team said, “I kept expecting him to jump but he just laid there. I’ve never seen anything like it.”

No, he wasn’t perfect. He got emotional. He couldn’t sleep to the tune of emergency buzzers going off every half hour and children screaming in pain and discomfort. The bandage hurt coming off. And sometimes he just reallyreallyreally wanted apple juice.

But that’s when the grace turned up too. A nurse just who popped over with the apple juice just in time… and some tylenol. The cleaning lady who kept bubbles in her cleaning box. Surprise visits from our favourite nurses who have been seeing Max throughout this ordeal, even though it wasn’t their job to pop by. Friends arriving with treats at just the right moment.

They may seem minor. But in a Children’s Ward full of aching families, every bit of joy and hope we experienced was acknowledged with deep gratitude. There were challenges… but we were so blessed in the midst of them.

When we got a visit from the lead surgeon who has been seeing Max, we saw the wound for the first time. It was bigger than I expected… but we learned that one of the larger abscesses had popped during the procedure and the fact that he didn’t have an infection already was a surprising result. (Lord, is that You?)

We also learned that there was indeed some minor nerve damage. That would explain the slacking we had noticed on the left side of his lower lip… the one I had been hoping was the bandaid pulling his skin… I saw the look of relief on the surgical assistant’s face when she said, “I wasn’t sure the extent of the damage. I was so relieved when I heard he could eat and talk completely normally.”

Just one more moment I counted our blessings.

We were there longer than anticipated. And though we were very well taken care of, we are ALL glad to be home – in our place of refuge and peace.

Max spends most of his time asking to run outside or sing and dance inside. He is visibly relieved to be back. He melts down every now and then – we give him some pain medication and he seems to morph back into himself within around 20 minutes. I think he is still hurting more than we realise … or even more than he is willing to admit.

Playing football with daddy is just too much fun. Its a good thing the paediatric outreach nurses are doing a house visit tomorrow. Seems he popped open part of the wound during a tackle. Oops.

We’re all catching up on sleep, enjoying a relatively lazy weekend, bursting into spontaneous prayers of gratitude to God because it truly could’ve been a different result in many ways.

Thanks for so many who prayed. We are grateful for you all.

Our boy is healed.


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.

Lumps and Bumps

I got an email today with a scanned copy of a letter from a man who leads a remote village in Papua New Guinea. In broken English, he sent a request for help from our ship, listing out about 10 health problems the village are facing, the last of them being “lumps.”

As I read that, I swallowed a lump in my own throat.

I can picture the lumps. Strange growths like the man who had a tumour so big in his mouth it has started leaking through his cheek… for the past several years.

Giant, infectious lumps like this little girl’s

Lumps and bumps that never get diagnosed… and often claim lives.

And to me, its that extra bit of sad right now because my own baby has a little lump… that still isn’t gone.

I’m so grateful to live in a country where we have had adequate health care. And not just adequate, but nurses that remember him between visits and treat us like rock stars. Surgeons who spend an unlimited amount of time answering our questions. Doctors who come in just to listen because they’re all a little puzzled about what’s been going on…

It tells me they aren’t just doing their job but they actually care about our little boy.

We’ve followed up on Max’s surgery and they’re not happy with the way his wound has healed… or about the new lumps that have emerged. That said, its not bad enough to warrant surgery yet… and they are over trying antibiotics.

So we wait and we watch and we pray.

And while we’re okay (I mean, you can’t argue with the fact that he’s an adorable almost-18-month-old who runs around giggling and cracking us up for the better part of every day), we don’t like it. We want to know he’s healthy and forget about the scary words the doctors mention as possibilities.

So while we wait… and watch… and pray… we continue on with our life. And for us, continuing on means doing our best to help other peoples’ lumps go away… Recruiting doctors and nurses, fundraising, renovating ships, writing newspaper articles, planning strategically for the future…

Because just a couple of hours away is another mother, making dinner over an open fire outside her hut, who is not only wondering what that lump is on her little boy’s neck… but also knowing that she may never find out… and may face the very real possibility that he won’t be okay.

We believed our little Max would bring life to many… and he inspires us every day to do our best to do the same.

Post-Surgery Pathology Report

I realise that between my update on our hospital stay regarding Max’s initial release after surgery and theΒ update after our recent visit with his surgeon, that I left out one small update… the results of his first surgery!

Forgive me, I’ve been a bit… busy… as of late.

I’m slipping in a pre-dated post for anyone who is curiously scrolling through old posts because I keep getting emails asking about it! πŸ™‚

The 4cm x 5cm mass that was taken out of Max’s neck tested positive for staph infection.

While staph is quite common, it is a bit of a wonder as to how it got there since he never had a cut on his neck. We were quite pleased to hear the surgeon say (at the time) that this is literally the best possible outcome under the circumstances. When we learned that an internal staph infection that gets into the blood can be quite deadly, we were very relieved it had been removed.

Max still has several lumps, which they hope will diminish with antibiotics. The surgeon will continue monitoring Max’s progress next month…

They are actually still testing for some other things that take longer (often months) to culture. If any of them come back positive, we are assured that the Australian Government is probably more concerned than we are and we will get a phone call asking us to rush him to hospital immediately. (Hooray for more isolation room and doctors who are dressed like astronauts!)

Thanks for praying for our boy! πŸ™‚

And Just Like That… Our Hospital Adventure is Over… for now.

Wednesday morning, the nurses told us to be ready to stay another day or two at the hospital. Lab results would take at least the rest of the day and we would be in isolation… still.

We packed toys and crayons and colouring books, ready to make the most of our time in the isolation room.

And that’s why we were so surprised with the nurse came in around 10am and told us we would be discharged soon!

The initial lab results came back negative for some of the scary infectious diseases they were concerned about from our visit to PNG and the rest of the results would take 2-3 days… so… we could wait at home!

We were stoked. We got Max’s drain taken out, his cannula taken out, and all kinds of exciting stuff and happily came home.

He has been an absolute little bundle of joy and energy.

We are wondering whether all of the puss that was surrounding the cyst was causing him a lot more pain than he had communicated because while he has always been an energetic kid, he just seems that bit more happy.

Or maybe, like his mom and dad, he’s just feeling a bit lighter on his feet with gratefulness…

Next week we will meet with the consulting paediatric surgeon again, discuss the remainder of the pathology findings, and decide whether to take out the remainder of the growth.

We’re quite hopeful and secure that this will probably be the end, but at the same time – as we mentioned in our last prayer requests, feel very stirred by God to pray that they do not miss anything important during the pathology or upcoming exams. We definitely want this to be over for good.

We have felt so absolutely loved and carried and supported through this entire process. Thank you to so many who have gone above and beyond in prayer or practically to care for our family. We certainly are grateful!!

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!! πŸ™‚

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