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Archive for the ‘Leukemia’ Category

Joshua’s Surgery This Morning

We’ve been chemo-free since late December. This morning is sort of the final stage in Joshua’s completion of his treatment as he’s having a surgical procedure to remove the port from his chest.

When Joshua was first diagnosed with leukemia, one of the first things that happened was the insertion of the port. At least 3 times a month for the last 36 months, blood has been drawn and medicine given through it. It’s attached to a ventricle in Joshua’s heart and makes the taking of blood and receiving of medicine much, much easier.

Today it’s getting taken out. And Joshua, for his part, is more nervous about this than any of the poison that’s been put into his system over the last 3 years:

“They’re going to do what to my chest?”

“With a knife?!?!?!”

Funny. But God willing, he doesn’t need it any more.

UPDATE: Joshua’s surgery took about an hour. Port is gone, and we were eating M&M pancakes by 10:30. He’s pretty jacked about his “scar.”

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End of Chemotherapy Party

Sunday we celbrated the end of Joshua’s chemotherapy. For 3 1/2 years we have eaten at Chick-fil-a at least once a week. But every time we were there, we had to tell Joshua, “I’m sorry. You can’t play in the playground. The doctors know you could get sick too easily because of the medicine you take.”

But on Sunday, that all changed. The owner of the restaurant opened up the doors on Sunday to allow us to celebrate Joshua’s last chemo pill. Alongside Joshua’s best buddies and some of the amazing people who have supported us over these 3 difficult years, we counted down Joshua’s last five pills. He swallowed them like a pro and had a piece of cake as big as his face. As you can see from the video below, he’s still coming down from the sugar high.

Wow. That’s a milestone.

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“Our Father…

It seems that those words have taken on new meaning for me in the past 3 and a half years. In those 3 years, I have done the best I could to care for my son. Through sickness and hair loss. Through crying nights and days of questions. And for much of the time, I have felt myself hanging on by a thread.

But You? You know so much better than I do what it means to watch your Boy suffer. And because You do, I believe You have poured Your grace and mercy upon us. That grace has been far more profound than just the ability to get through the day, though You have been continuously faithful for doing that.

The fact that we are still here – all of us – is a testimony to your persevering power.

But You have gone beyond giving us our daily bread. You have sat with us in quiet rooms. You have rocked with us in hard-back chairs. You have cried with us as we have seen friends leave this world and go to be with You. You have lifted us up and born us on your strong back.

Over and over again, You have proven Yourself to be abundantly, exceedingly, and wonderfully able.

I think this morning of what our son’s name means: The Lord is Salvation. And the truth of that statement is starting to seep in. You have saved, are saving, and will continue to save us. And through these troubles, amazingly, we have become more convinced of Your love in Christ – from which we will never be separated – in us.

We have believed, and yet you have helped our unbelief. I confess at times I have accused You of sleeping in the boat while the wind and the waves raged around us, but I know deep in my heart that You do not slumber or sleep. You have been ever watchful, ever mindful, and ever good.

Thank You, Father, for keeping us in faith. For prospering us and not harming us. For giving us hope and a future.

And now, will You, by Your grace, continue to uphold our family as we move forward. Help us not to forget Your faithfulness. May the remaining decades of our lives ring with the stories of Your goodness. I pray that our little boy would become convinced of Your good work in His life, and that we might faithfully be a comfort to others with the comfort we have received from You.

May it be done for the glory of Your own suffering Son who now sits victoriously, interceding for us even at this very moment.

Amen.”

**Today is the last day of intravenous chemotherapy for Joshua, 3 and a half years after his diagnosis of leukemia. After his treatment today, he will take his pills for 5 more days. The last pill is Sunday.

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And Then There Was 1…

Today is Joshua’s next to last chemo treatment, God willing, forever. Hard to believe. Really hard.

I want to think of something profound to say at this point, but I’m learning that sometimes moments speak for themselves. They don’t need commentary.

Almost done, son. Almost done.

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Leukemia Reflections – Year 3

Yesterday, October 18, marked the 3 year anniversary of our 5-year-old’s diagnosis with leukemia. On the anniversary the previous 2 years, I’ve written a series of reflections from the previous year. In case you want to read them, you can do so here:

Diagnosis Post

Year 1 Reflections

Year 2 Reflections

This year is a little different, because we are now, God willing, approximately 2 months and 3 chemo treatments away from being finished with chemotherapy. So here’s some thoughts 3 years removed from diagnosis day:

1. It’s easy to hide behind your pain. You can use cancer as an excuse for pretty much anything – poor job performance, callousness toward others, financial irresponsibility – you name it. But no good comes from hiding behind. Cowards hide.

2. I thought coming to this point in Joshua’s treatment would mean an end to fear, but we find ourselves grappling with a whole new set of fears. These are about relapse, social development, physical development, and issues later on in life. These fears, too, must be looked squarely in the eye and told the gospel.

3. No man ever collapsed from the pressure of one day. It’s only when we start adding the weight of tomorrow’s worries that it gets too heavy for us to bear.

4. The Lord, I believe, has a special measure of grace reserved for days like the one 3 years ago. You wake up on one of those days not knowing that this grace has been bestowed upon you; and if you did, you might very well want to give it back. Nevertheless, God provides it before we know we need it. And in that moment when the worst happens, we cry, we yell, we moan – but we keep on going.

5. It’s possible for time to pass both slowly and quickly at the same time.

6. I believe God is interested in healing Joshua. I also believe God is interested in healing our whole family. The difference is that we knew what Joshua needed to be healed from. It was only in time that we began to see that we were also sick.

7. Things will never be the same after this. And that’s not all bad.

8. The suffering and pain of children is, in my opinion, the clearest evidence of the devastation from the fall.

9. Our second child has never known a life without cancer. Our third child (God willing) will never know a life with cancer.

10. It’s very, very difficult to be someone’s friend as they walk through pain. To do so requires an enormous emotional investment, and it doesn’t happen by accident. Only by rugged and determined perseverance do people walk the road of pain together.

11. I believe it’s important to the Lord that the last 3 years aren’t something “we put behind us.” It’s important for us to remember, to tell the story, and to help our children remember, too.

12. Understanding is neither promised nor given in whole this side of heaven. The Lord is too wise and has His fingers in too many places to grant our small minds full understanding of the “why” of what He does and allows. However, there’s a difference, I think, between understanding and perspective. And while we don’t get understanding, the little moments when we see Joshua’s cancer being redeemed in a myriad of different ways in our lives and in the lives of others, that brings us perspective.

13. If you would indulge me, I’d just say that one of the greatest reflections I’ve had over the past 3 years is that my boy is unquestionably, absolutely strong and courageous. Like his namesake. He has been stuck with a needle 4 times as much as I have in his short life. He’s lost all his hair and grown it back. He has, without complaining, taken at least 12 pills every week for the last 150 weeks. And he’s done it with a smile.

I’m so proud of my son.

[CORRECTION: I made a calendaring mistake; Joshua's spinal tap and chemo is a week from today; not today. Sorry, Jana, that you had to be standing at the appointment desk at Children's Hosptial to find that one out.]

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A Trip to the ER

We had a deja vu moment last night, and not the kind that involves Denzel Washington.

About midnight, Joshua woke up wheezing, coughing, and burning up. In leukemia world, the threshhold of fever is 100.5. If the fever goes beyond that, you have to head to the emergency room. Joshua’s was up around 102 so off we went.

The docs decided not to admit him to the hospital, so thankfully everyone is back home as I’m writing this. It was sort of jolting, since he’s been so healthy for quite a while, but also a reminder that Joshua is still undergoing chemotherapy for leukemia.

I remember the first year after Joshua was diagnosed when we were going to the ER at least twice a month. We had the routine down. But now we’re a little out of practice. Deja vu.

But we are hoping, as he goes back to the clinic this morning for another check, that everything’s on the up and up, especially since this is birthday week for the J-man.

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Dear Dr. Zieber:

t’s Wednesday again, Doc. At least every 4 weeks, on Wednesday, we’ve been coming to see you. And every 4th Wednesday you’ve been there, ready to see us. All I can say is “thanks.”

We met you almost 3 years ago under the worst of circumstances. Jana and I were sitting in a room at Vanderbilt Children’s Hospital waiting for some news about our son. The preliminary diagnosis was leukemia; we were waiting to see if that was actually the new state of our lives. And that’s when we met you. You were the one who walked right in, looked us square in the eye, and told us the God’s-honest truth: “Joshua has Acute Lymphocitic Leukemia.” No pretense; no buttering us up; no clouding the issue. That’s also when we knew we could trust you.

And we have trusted you. We’ve trusted you to be our guide over these many months, explaining to us what “dexamethasone” and “Ari-C” are and why they affect Joshua the way they do. We’ve trusted you to tell us what medication levels for him to take, when to add more and when to take some away, and what all of it means.

You were also there that day when Joshua’s blood levels were a little high, and you again looked us in the eye when you told us that his levels were high enough to indicate that he could be relapsing. And you stayed well over the end of your shift in order to speed through the testing and personally call us 2 hours later to tell us that all was well.

You have seen one of our children lose and regrow his hair. And you have seen the other of our children be born and grow into a 2-year-old. It’s not stretching the truth to say that over these past years, there is not a single person who has had a larger impact on our lives than you.

It’s time for us to say good-bye, and don’t think we’re not a little bitter about it. After all, Joshua’s not done with treatment, but you had to be all super-smart-genius-doctor and go and get a job working with children who have brain tumors halfway across the country. Next time try and do something important with your life.

Doc, it’s an incredibly re-orienting thing to know that you are powerless to help your own child. I guess we all are, but sometimes you become so acutely aware of it. In that moment, it’s strange to look at someone you don’t even know and, in a sense, hand his well-being over to her. Though it’s a little trite to say, it needs to nonetheless be expressed. Thank you for what you have meant for our family. And though you might not put it this way yourself, thank you for being the instrument of the Lord in our lives.

Forever Your Grateful Friends -

Michael, Jana, Joshua, and Andi

**Dr. Sarah Zieber is finishing her fellowship at Vanderbilt Children’s Hospital and moving on to continue her career, specializing in the treatment of children with brain tumors in Colorado.

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After a night in the ER and half a day in the hospital, I had a chance to cool off. And I knew that I had some things to be sorry for. Most specifically, I felt as though my attitude had called the wisdom of God into question.

Isn’t that what we do when we complain? We assume that we have a better idea of how the world should be run. That we are wiser than the Lord. That our plans are better than His.

Where would we be if we ran the world?

So the best way I knew how, I prayed with Jana and repented of my arrogance and anger and tried as best I could to express our choice to try and trust the wisdom of God.

It’s certainly not the first time that’s happened. But most often, we just move forward in faith, trusting that there is some purpose and reason behind those circumstances. We put one foot in front of the other and never see what that purpose is – we just trust that it’s there. That something meaningful is happening behind the scenes. It’s rare you get a glimpse inside.

Meanwhile, the doctors told us that we were likely to be released soon and be able to go back to our vacation. It was great news, and we attributed it to all the people praying for us back home. And then God cracked the door.

We were sitting in the playroom at the hospital and we struck up a conversation with a great family. They’re from the Detriot area, have 4 kids, and were at the beach on their family vacation. Their youngest son started acting strangely, and they found themselves at the Orlando Children’s Hospital in the middle of their vacation too.

That’s when their two year old was diagnosed with leukemia.

On their vacation.

With three siblings still at the beach, unaware of what was truly afflicting their younger brother.

Can you imagine? Strange city, strange people, strange disease – and yet here we were, randomly, in the same room.

They were able to ask questions and get honest answers about the treatment and most importantly, see Joshua, a kid also diagnosed when he was 2, bouncing around with a full head of hair, acting like any normal kid.

It was as if God had flipped the switch on Joshua’s counts and divinely appointed this moment.

And then we were released, able to go and do everything we wanted to on the trip, after 36 hours in the hospital.

It was incredibly humbling, and another reminder that we are loved by a busy God. He’s a God constantly working and moving in ways we cannot understand and fathom, working for the good of all who love Him. He does right.He does what is best.

By the way, when we got home, Joshua went to the clinic at Vanderbilt. His counts had returned within the span of a few days to being normal.

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In the world of leukemia, when a kid gets a fever, it disrupts life. And the fever threshold is 100.5. Beyond that, we have to go to the emergency room because something’s going on. And even a normal infection might potentially be concerning because of a depressed immune system due to chemotherapy.

Before our Make A Wish trip to Florida, it had been over 5 months since we went to the emergency room. And leading up to that trip, we enlisted everyone we knew to pray for us, that we would be able to stay healthy for the duration of our time down south.

We got to Florida on a Thursday. We went to the Magic Kingdom on Friday. Then we went to Animal Kingdom on Saturday. The plan was to go to Sea World on Sunday, and we were excited – especially Joshua. He’d been to Sea World before in San Antonio, and he loved it, so he was particularly jacked.

Late on Saturday night, a couple of hours after Joshua had gone to bed, we heard him coughing. Didn’t think too much about it, just went in to check on him. And what we found was gut-wrenching.

Joshua was sitting up in his bed, clutching his new Mickey Mouse to his chest, covering up his mouth so that his coughs would be quiet. His face was red from crying. And all he said was, “Can we still go to Sea World?”

He knew he was sick, and the thermometer proved it. 102.7. So we jumped in the car and headed to downtown Orlando to the children’s hospital. Even though by the time we got there Joshua was singing songs and feeling fine, his temperature was still up, his counts proved to be low. Lower than they had been in months, meaning that the docs at the ER checked us into a room upstairs.

No Sea World.

And I’m not going to lie – my emotional state went from sadness to anger pretty quickly. I said some things to the Lord I’m not proud of:

“Why now? What are you doing? Can’t we get a break?”

“Woud is really disrupt the eternal plan of the universe for this little boy to get to go to Sea World?”

“I’m sick of learning things. I’m tired of my life being an object lesson. I want a week off.”

And so we settled into our small room, wondering if that was the end of our vacation, with a disappointed little boy and a really, really angry dad. But the Lord? Well, He was busy, and as always seems to happen, had something else in store…

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Back to Vacation

Great news – we’re back at the Give Kids the World village. And Joshua has been sleeping off his hospital stay for the past 2 hours. but we’re clear, ready to start the vacation again.

And we’re going to stay an extra day just to stick it to leukemia.
Tomorrow, we go to Sea World. And we’re pretty thankful for it.
Thanks, friends. More soon…

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