worshippingwarrior

Chronicling the Adventures of Judah Caden Fitzpatrick

TITLE POST: What’s in a Name?

Judah in Hospital

Call me crazy, but I felt like God told me in college—long before I even knew Josh—that I would have a son named Judah. It comes from a dramatically dismal story in the Old Testament.  In Genesis, the patriarch Jacob fell in love with a girl named Rachel. After working for her father for seven years in order to earn the privilege of marrying her, he got duped into marrying her (arguably less attractive) older sister Leah. Jacob did not love Leah. God saw this and “opened her womb”. Her first three children were sons and with each one she hoped that she would win Jacob’s love. But it didn’t work. So when her fourth child turned out to be a son she decided to name him Judah, which sounds like the Hebrew word for “praise”. It was as if she finally realized what was most important in life and found rest in that. Instead of seeking Jacob’s love yet again, she decided to praise the LORD. Later in the Old Testament narrative Judah becomes one of the twelve tribes of God’s chosen people Israel. He receives a great blessing from his father (see Genesis 49) that promises victory over enemies and great authority. Judah became the tribe that led Israel into each of its battles (see II Chronicles 20 for the coolest example of this). And many years later Jesus was born into a family descended from the tribe of Judah. Revelation 5:5 refers to Jesus as the “Lion of the tribe of Judah”. Praise. Authority. Victory over enemies. Lions. It doesn’t get much “cooler” than that, right?

When we found out in November of 2011 that we were expecting, we just “knew” it was a boy. And not just any boy, but Judah. The first name was a no-brainer, but we struggled for months to come up with a middle name worthy enough to be paired with it. In a much less romantic way (okay, so we googled boy names that start with C–don’t judge!), we came across the name “Caden”. At first we just liked it because it sounded nice. Then we found a few sources that said it means “warrior” and we were sold on it. Judah Caden….a worshipping warrior. We pray that, true to his name, he is both a leader of people and a lover of the LORD. Strong and victorious, yet completely surrendered to the source of that strength—the True King. Little did we know how early the LORD would begin to bring him into that role…

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FORWARD

Today marks a year since Judah died. We don’t really care much for dates or get caught up in any particular moment. He is just as gone today as the 364 before. We miss him just as badly. Yet we can’t help but think of what we were doing this time last year…watching him take his final labored breaths and holding him for the last time, planning his funeral, wondering how we were going to carry on with such broken hearts and an empty home. Since then, God has slowly, gently, carefully begun to pick up the pieces of our broken hearts and shattered dreams. We will never be put back together the way we were. Our family will never be complete. We will always ache to have our son. But God, in His unyielding goodness and faithfulness, is making us new. He’s giving us new hope. He’s showing us glimpses of what it may look like for Him to recycle our pain.

The sweetest of gifts He’s given us this year is our little lamb, Rachel. She’s definitely her own person, but we can see her older brother’s spunky, determined spirit and that unmistakable twinkle in their eyes. She has been for our souls an unexpected balm, bringing laughter and light back to our home.

God has also opened the door for us to pursue foster parenting. We’ve taken classes and completed a home study and just found out last week that we are officially licensed to foster/adopt in the state of Ohio. We are working with an agency that specializes in taking care of medically fragile children. We’ve felt strongly that we want to use our experience navigating the healthcare system and taking care of Judah to help other children with serious medical needs.

I (Laura) have also found healing in running. I sort of started running on a whim with no real goal or purpose, but after a couple of pep talks from seasoned runner-friends I’ve decided to train for the Columbus Marathon next month (October 16). This race is particularly special because it is sponsored by and in support of Nationwide Children’s Hospital where Judah received all of his incredible medical care. Each mile is devoted to a different department of the hospital and highlights children still fighting their battles. I have volunteered to be a “Children’s Champion” which means I’m trying to fundraise for the hospital, specifically the Hematology/Oncology department. It is a real joy to me to honor Judah’s memory by raising support for others in their fight against cancer. Please check out my Children’s Champion page or send me your email address for more info: http://give.nationwidechildrens.org/site/TR/Events/General?px=1313565&pg=personal&fr_id=1060

We are still hot messes. We have our fair share of bad days. We cry and hurt and question. Fortunately, God is the same no matter what we’re feeling. He’s still good, still faithful. We can’t say it better than singer/songwriter Sara Groves, so we will leave you with her words:

Great is thy faithfulness, Lord, unto me
Morning by morning I wake up to find
The power and comfort of God’s hand in mine
Season by season I watch Him, amazed
In awe of the mystery of His perfect ways
All I have need of, His hand will provide
He’s always been faithful to me.

I can’t remember a trial or a pain
He did not recycle to bring me gain
I can’t remember one single regret
In serving God only, and trusting His hand
All I have need of, His hand will provide
He’s always been faithful to me.

This is my anthem, this is my song
The theme of the stories I’ve heard for so long
God has been faithful, He will be again
His loving compassion, it knows no end
All I have need of, His hand will provide
He’s always been faithful, He’s always been faithful
He’s always been faithful to me.

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Goodness and Mercy, Part 2

It has been nearly a year since we found out Judah’s cancer was back with a vengeance. Judah has been “gone” for nearly five months now, but we started losing him long before that. We haven’t shared much on this blog since then because it has felt nearly impossible to find words for the last year. The love, support, prayers and gifts/cards we have received have been so encouraging. Thank you. But we have also had countless dark days filled with immense pain and unbearable grief. “Miss” doesn’t seem to adequately describe how we feel–ache is the word that most readily comes to mind—we ache to have him back.

As we mentioned in a previous post, two weeks before Judah was re-diagnosed I had a vivid dream in which I heard the phrase, “Surely goodness and mercy will follow me all the days of my life” over and over again. Since that dream, our lives have looked and felt completely void of “goodness and mercy”. While we did not see it at first, His mercy has been protecting us when we have gone wayward (with our actions, decisions or thoughts) and His goodness has been protecting us when life has gone wayward (unexpected turns, disappointments, confusion, pain). It is this very “goodness and mercy” that has held us together, that keeps us from completely losing hope and promises better things on the horizon.

Speaking of better things on the horizon, God has given us an unexpected (certainly unplanned) gift…a little girl due very soon (as in, the next 24 hours). While I (Laura) could not initially comprehend why God would bring a second child to us in the midst of losing our first, I now see once again how perfect His timing is. Beauty for ashes, joy for our mourning, a garment of praise for our heaviness (Isaiah 61:3).

We will post pictures and stats on this little girl as soon as she comes.

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Seven

photo-24On February 3rd of this year, we were in the hospital with Judah. We found out that the cancer had returned to his heart. Today, exactly seven months later, Judah completed his time on this earth. God has given us great peace. We will continue to look to Him, trust Him and praise Him. We would be honored if you would join us in this once again. We will share arrangements as soon as we have them (probably later tomorrow).

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Fight!

DSC_0010As we shared a couple of weeks ago, our doctors told us that Judah’s cancer is back, too aggressive and advanced for further medical treatment. They graciously attempted to prepare us to watch our son’s life slip away in the coming weeks or months. In other words, he will never have another birthday. He’ll never learn to count or say his ABCs. He’ll never get to enjoy the house we just bought with him in mind. He’ll never grow up to marry his sweetheart Lucy. Our apartment is the place where he will breathe his last breath. This is how it is going to end.

 

 

As the gravity of our situation and its evident outcome settled in our minds, we were overcome with grief. We wept deeper than I knew humanly possible. We stared off into nowhere wondering what it all means. We lay in bed and ached, physically ached, at the idea of losing our son.

 

To use a Biblical parallel, we felt like a large army stood before us and we were outmatched and outnumbered, with no hope for anything but defeat. Any strength we thought we had in Judah’s first battle with cancer was depleted. The victory we thought we gained last year quickly turned to defeat. The last six (glorious) months in remission and normal life swiftly swept away. We felt too weak to fight and too afraid of the outcome even if we tried. We started to let that grief and worry and fear consume us. All we could hear was the doctors’ death sentence ringing in our ears and filling our hearts with unimaginable sorrow as if it were the final say. But in a way that only God can, He began to speak to us through the noise.

 

God reminded us that any time an enemy came against His people in the Old Testament (and there were many times), He gave them a specific strategy for engaging that enemy. From reducing their own army to 300 men (Judges 7) to marching around a city until its walls fell down (Joshua 5-6) to singing (you know! II Chronicles 20), God always had a plan and was always at work. It wasn’t about His people ensuring their own victory, but drawing close to their heavenly General, listening to His plan and following whatever that was. Through this reminder we realized that we are not responsible for the outcome of this new battle; we are responsible for how faithful we are to listen to what God is saying and doing and fighting how He tells us to.

 

So, now…we are not letting ourselves be consumed with sorrow. We are not grieving. We are rarely crying. We are not giving our minds over to morbid thinking. We are not ignoring the medical facts that have been presented to us, but we are also not believing that they are the final verdict. We are trying to do two things: enjoy every single day for the gift that it is AND contend for more of those days.

 

DSC_9908Some of you have painted for us, worked trades, cooked meals, written encouraging words, given generously and many more have shared that they are praying for us. THANK YOU. We have been so blessed (to the point of embarrassment!) by the way people are pouring their love and support on us.

 

 

Many have asked how to help us, and this is what we ask of you: Please join us in praying that Judah’s body will be restored completely to the way God created it to be… CLEAN.

 

One of the ways we are doing this (part of the “battle strategy”) is to fast on Fridays until Easter. We want anyone who is with us in this fight to join us in some way. Draw near to the presence of God with us. Pray for healing with us. Fast with us. Fight alongside of us.

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Goodness and Mercy, Part 1

Blog pic faceI (Laura) had a sweet dream two weeks ago. I will (maybe) share the entire dream later, but the end is what I will mention now. Over and over again I heard this phrase, “Surely goodness and mercy will follow me all the days of my life.” (turns out that phrase is from the Bible, Psalm 23:6a)

We SO wish we didn’t have to write this. We don’t know how. We don’t want to. We would love to ignore it…forever. But we can’t. So, here it goes:

On Tuesday, Judah had his regularly scheduled MRI just to make sure his heart is still clean of cancer (just like three months ago). After the MRI, I was holding him in the recovery room when his cardiologist and oncologist came in. (It is unusual to see them together and directly after a scan…we were scheduled to hear the results on Friday.) As soon as they said, “You probably know why we are here,” I started crying. I didn’t need to hear the rest, but I didn’t have much of a choice: “The tumor is back, it’s bigger than it was before and it is growing around his heart in a very complex way.” We were immediately admitted to the hospital for more tests and meetings to figure out what exactly we were facing and the best way to attack it. Many treatment options were discussed: he could have another open-heart surgery to “debulk” the tumor but this time it is much larger and more complicated. He could have more chemotherapy. We can opt for radiation this time that would directly reach the tumor. Each of these options brought its own set of complications and had the same caviat: It’s only going to buy you more time with him. They did a PET scan on Wednesday to see if the cancer had spread anywhere else in his body. After that scan, our oncologist came in with more bad news: it looks like there is something in his brain. Thursday, after a brain MRI, our oncologist came in again to relay the results: there are 7-8 tumors in his brain. We could try to have the largest of the brain tumors surgically removed, but this would require 5+ hours under anesthesia that he might not wake up from because his heart function is compromised. We could opt for more chemo and try radiation on his brain, but the risks (weakening Judah/making him feel worse) far outweigh any potential benefits (more time). After discussing these options with our doctor and nurse, the final plan was clear: We are taking our boy home and we are going to enjoy him as long as we can. We aren’t going back to the hospital. No more treatments, no more scans, no more hours of not eating so he can go under dangerous sedation to see what’s going on in his body, no more nights in a crib of metal bars with endless IVs and lights and constant beeping. We are home. And that is where we plan to stay. The doctor hopes we will have 4-8 weeks of “normal” Judah before we start to notice a decline in his health (lethargy/discomfort). Whenever that time comes, we have an incredible team of nurses and doctors that will make Judah as happy, normal and comfortable as possible for as long as possible. So, there it is. Those are the medical facts.

Now I suppose we need to write about what is really going on (goodness and mercy). You know, the part we can’t see with our eyes. The story that is being written off the pages. We will. But not quite yet. We are still processing. There is more to be said. Just have patience with us. We have all of the data we need and a great support team around us, if there is anything you can do for us it is to pray.

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All Clear!!!

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We met with Judah’s cardiologist and oncologists today to discuss the results of Tuesday’s scans. They happily reported that there are NO CHANGES. Yep, that’s right: nothing new! [Insert deep sigh of relief, song of thanksgiving, shout of praise, tears of joy, a happy dance…and/or hugs and kisses!]

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Brave

Brave2Judah had his first “check-up” scans (Chest CT and cardiac MRI) today to make sure he is still in remission. It is truly hard to believe that it has been three months since his treatment ended. With three gloriously normal months of his hair coming back and zero hospital appointments, I think I’ve already begun to forget how difficult the preceding months were. Just last week I was giving Judah a ride on a wagon at our church and was trying (struggling) to steer it backwards. I had flashbacks to the countless wagon laps we made around the 12th floor of the hospital to pass the long chemo days, and I laughed and thought to myself, “How on earth did I steer those wagons backwards? And with an IV pole in my ‘spare’ hand?!”

No one would argue that steering a wagon backwards or having their child go through chemo is difficult. Many have asked us, “How did you do it?!” We have been praised and encouraged over and over again by people saying things like “you guys have so much faith/courage” and “I just can’t imagine it”. We have struggled with how to respond to these questions and comments with gratitude and humility. A couple of months ago we found words for our answer (thanks to Bethel Music/Amanda Cook/”You make me Brave”):

I stand before You now
The greatness of Your renown
I have heard of the majesty and wonder of You
King of Heaven, in humility, I bow

As Your love, in wave after wave
Crashes over me, crashes over me
For You are for us
You are not against us
Champion of Heaven
You made a way for all to enter in

I have heard You calling my name
I have heard the song of love that You sing
So I will let You draw me out beyond the shore
Into Your grace
Into Your grace

You make me brave
You make me brave
You call me out beyond the shore into the waves
No fear can hinder now the love that made a way
No fear can hinder now the promises You made

As hard as our situation seems, it is ultimately the work of God in us that makes us brave enough to face these (and any) difficult circumstances. He is making us braver and braver with every scan, every surgery, every doctor’s appointment. We are being trained to shed fear and charge in to the waves with confidence that His grace will be there waiting on us—to fill the voids where our strength wavers. I’d be lying if I said I haven’t felt at least a tiny bit of fear or apprehension about the results of today’s scans (which the doctors will share with us later this week), but we are praying that His love will continue to make us brave.

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By the Numbers

One open-heart surgery.

Two-lumen Broviac (central IV line).

Twenty-two weeks.

Seven cycles of chemotherapy.

Three cardiac MRIs, audiograms, chest CTs, echocardiograms, kidney screenings and PET scan.

Thirty-six in-patient days in the hospital.

Seventy oncology nurses.

Thirty oncology personal care assistants.

244 blood pressure checks, and at least three times that number in attempts.

47520 milliliters of sodium chloride (IV fluids while in chemo).

308 Heparin flushes (in/for Broviac).

30 dressing changes.

Five blood transfusions.

(At least) 106 prayer grams and encouraging cards (and counting!).

$729,094.53 charged to our insurance company.

We are done. Really done. This reality is starting to sink in and we are loving every minute. We wouldn’t be here without your prayers and support. THANK YOU!

 Before After

Here is a picture of Judah the night before he had his central line (Broviac/port thing) removed three weeks ago and a picture of him two days after it was removed.

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End of Cycle 7!

end of cycle 7Judah completed Cycle 7 of chemotherapy nearly two weeks ago. His post-chemo scans (PET, Cardiac MRI, Chest CT) were conducted last week. The results? ALL CLEAR! [This is where you can say “Hallelujah…thank you, Jesus!”]

As we walked out of the hospital two Thursdays ago (hopefully for the last in-patient stay!), a nurse asked us, “What are you going to do now?” To this question I feel like I have a thousand answers. The shortest answer is: Shop for a teeny pair of swim shorts! The longer answer reads something like this…

After many difficult conversations with our doctors and wise loved ones and each other and the LORD, we have decided not to go through with any radiation or additional treatment for Judah. That’s right: we’re done! No more lab draws or blood transfusions or excessive bruising or interrupted, sleepless nights. We are finished with treatment.

As aggressively as they wanted to treat Judah’s tumor in order to be sure it would not recur, our doctors ultimately felt the negative effects of radiation outweighed its benefits. They call it the “wait and watch” strategy, meaning regular scans with the hope that no cancer recurs in his heart or develops elsewhere in his body. While waiting was not the first choice of any of our doctors because (in their minds) it is highly likely that the tumor will reappear, they finally decided this was the best decision for him. We, too, struggled greatly with whether or not to expose him to radiation, but that one phrase lingers in our minds.

“Wait and watch!” Of course! How could we forget?! We received these instructions months ago for the circumstances we find ourselves in today, allllllllll the way back at the beginning of this blog/journey in the II Chronicles 20 passage (Standing Still). It’s right there in verse 17 (NLT), “But you will not even need to fight. Take your positions; then stand still and watch the LORD’s victory. He is with you, O people of Judah and Jerusalem. Do not be afraid or discouraged. Go out against them tomorrow, for the LORD is with you!”  Did you catch it?! “Take your position; then stand still and watch the LORD’s victory…”

This next chapter of life will test our faith maybe more than the previous. Not that open-heart surgery and seven cycles of chemo were easy, but in some ways they required less faith than “doing nothing” (waiting and watching). We must remain steadfast in our trust in the LORD, and continuously depend on Him alone to bring victory.

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Judah at the Beach

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