Today is Rare Disease Day. 

This time last year, I didn't have a clue about vasculitis, any form, really.

Fast forward one year and we are almost 6 months post Granulomatosis with polyangiitis (fka Wegener's) diagnosis for our son.

We have learned so much since September 2024.

We've learned about this rare disease and the havoc it causes to a body in a matter of days.

We've read and watched so much research.

We read and listened to so many first-hand accounts (some super-scary and some super encouraging). 

We have learned what it means to rest in knowing that God is in control.

We have learned the strength of Zac's character.

We have learned to lean on others.

We have learned to trust those with wisdom in areas we know nothing about.

We have learned to speak up when something doesn't seem right.

Above all, we have learned that when nothing seems stable, our stability lies in the truth of Who God is. He does not waver. He always has been, always is and always will be.

We are so thankful for our rare-disease warrior. He does not give up. He fights continuously. Calmly and courageously.

Joshua 1:9 ESV

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

Our favorite basketball player played his last game of the season today. GPA didn't stop him. He was diagnosed the beginning of September and he played EVERY SINGLE GAME this season. He gave it his all on the court. Even on the days when he wasn't feeling 100%. He showed up and gave his team everything he had.

So proud of him and the entire team. I've known almost all of these boys for the last 3 years and it's so awesome to see them playing together. It's fun to cheer them on and see their faces when they hit the shots and make the plays. They high five each other and cheer for one another. ❤️ 

Thankful for everyone who continues to love on Zac. He had a sweet couple come up to him, after the game, and tell him they've been praying for him from the very beginning. They are the great-grandparents of another player (a friend and classmate of Zac's). Just when I think I can't be any more humbled. To know they cared enough to pray for Zac these past 5 months is so incredibly sweet. There is no family like the family of God. 🙌

God is good, all the time. All the time, GOD IS GOOD.

(And yes.... I made the sign. Happy to make them for your kid. Hit me up. 🤪) 

Today was Zac's 6th AND FINAL cytoxan infusion! 🙌 His sister got to play hookie from school and tag along to help celebrate. ❤️

For the first time, Zac struggled a lot with nausea and, lost that battle a few times. He did end the day feeling better. Thankful for our ever faithful nurse, Olivia - she is just so patient, calm and caring. We love her! 

His labs showed that his kidneys continue to stay stable with about the same levels as last month. The protein in his urine has improved so that's good. Both his nephrologist and rheumatologist felt the labs showed slow improvement and we're confident that we can take him off the steroid - an answer to prayer!

We are waiting on the nephrologist and rheumatologist to determine if he will need the large 8 hour rituximab infusion in March. For now, we will move forward with monthly labs and have monthly appts with either the rheumatologist or nephrologist. This is the "monitoring" stage. We're not in remission yet. We'll be watching for any "flares" and those are seen through labs or through Zac letting us know how he's feeling. 

Regardless he is offically done with this course of chemo!!! Because of this, today ended on a great note with Zac being cheered on by some awesome friends, loving grandparents, and nurses and staff from Rainbow Children's infusion floor and he RANG THE BELL!

Zac has been an inspiration throughout this all - keeping the nurses smiling and laughing and shining brightly for Jesus.

Thank you for all the texts and calls. For covering our family in prayer. For being the community we never knew we needed.

Ephesians 3:20-21 (ESV)

"Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen." 

I was recently interviewed regarding Zac's granulomatosis with polyangiitis (GPA). I am honored to bring more awareness to this extremely rare disease. We're less than 5 months in and still learning so much, but what we know now is eye-opening. Link to the podcast interview is here: https://open.spotify.com/episode/4R2iKhZrTAcZUW0I4SGyTc?si=rLR8oaJuShi0jnQ4-rimNA

We know that this isn't a mistake. 

We know this is a part of God's plan for Zac's life.

We have seen Zac grow in his faith and learn through all of this.

Craig and I have grown in our faith, realizing in a whole new way that "we can do hard things." 🤪

We have seen Ellie pushed beyond her comfort level, turning around to encourage and support her brother, while leaning into God.

Zac and Ellie ask some hard questions and when we can't answer, we find someone who can. 

Thankful for our support system, who have held our arms up - continuously praying for and with us, loving on us in amazingly sweet and tangible ways.

We will never be able to repay you all. But we will never forget a moment of it.

We asked Zac what verse has been his favorite and he picked Isaiah 41:10 (ESV) :

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with My righteous right hand."

Amen and amen.

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior

Zac had his 5th of 6 Cytoxan infusions at UH Rainbow's today. Let me start by saying we KNOW how blessed we are that he's at Rainbow's. The entire staff is just beyond amazing. We had the same nurse today that we've had the last 2 times - Olivia. She is so much fun. So much laughter involved with her in the room. Zac was actually laughing DURING the IV insertion this morning. 🙌 We love her.

We realize this could have gone so many different ways when Zac first presented. We have been so incredibly blessed with so many good things in a situation that is less than ideal.

Does this chronic disease stink? Sure.

Do we pray for miraculous healing? Absolutely.

Do we see the many blessings happening every day? Yes, yes, yes (and we miss many because, well, we're human and selfish)!!! 

There are many situations that Zac should never have to be in BUT because of this, Zac has some also pretty cool experiences.

He is able to see the love and generosity of others.

He's able to put into practice choosing happiness.

He's a shining light that God is good. All the time.

OK, now for the medical update! 🙌 

His kidney function went from 31.8% on December 16th to 38% today!!!!!! 

His creatinine is at 1.48 today. For reference, it was 1.68 on Aug 31st when he first presented. 

His urine protein levels continue to drop so this is further confirmation that his kidneys are truly healing. He has shown a 50% improvement in urine protein levels from Aug 31st. 

And, Zac's favorite = he has been given permission to increase sodium allowance from 2000 MG a day to 3000 MG a day. 🎉

Still waiting to hear from the rheumatologist on the labs, but the nephrologist was happy (she's pictured with Zac). ❤️

We had a good day filled with cards, Lego (always a staple), some hangman and some rare, but oh-so-sweet Ohio sunshine.

Ellie went to school and was then loved on by her aunt and uncle. These days are her, but she continues to persevere. She's an amazing sister.

God is good, all the time. All the time, God is good.

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior 

Zac had his first basketball ball game of the season today with Medina Christian Academy.

What an amazing moment to sit and watch him play - a mere 4 months post GPA diagnosis. God is good, faithful and so very gracious. 

Zac's team did a great job putting the skills they've been taught during practice into action. They won, 57-22. Great start to their season!

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior

Christmas break is almost over - we have had a blast.

We started with Christmas cookies.. And an epic night at the Cleveland Cavs game with our friend Amy and her daughter, thanks to a gift from a friend. The kids got incredible memories and Ellie and I were spotted on TV (surprise, we had the same look and everything 🤣).

We loved spending Christmas Eve with our church family, taking time to focus on the meaning of Christmas. So thankful for the gift of Jesus. ❤️

We spent some time at the Cleveland Aquarium (Ellie's first time).

I took time to treasure all the imaginative play these last 2 weeks. I love this stage with my kids. We have played so many board and card games. We've had precious time with family & friends and friends who are like family. 

I'm thankful for our family.

I'm so thankful for the time God has given us with our children.

I'm thankful for their health.

I'm thankful that, even with Zac's diagnosis, we were able to spend the last 2 weeks at home and without doctor's appointments or any lab work.

I'm even thankful for the snow that came so that the kids could play in it (I even braved it and went sledding with them!). 🤣

We continue to monitor Zac's energy, his blood pressure and heart rate, how he's sleeping, feeling, his sodium intake and overall health from home. We are careful with exposure to sickness. It's become such a way of life that it's hard to remember NOT doing all this daily. And we've only been doing this since Sept 2024. 

God is in control. He always has been and always will be.

God is so good and gracious. He gives us more than we deserve. He blesses us beyond measure. 

Psalm 146:1-2 (ESV)

"Praise the Lord! Praise the Lord, O my soul! I will praise the Lord as long as I live; I will sing praises to my God while I have my being."

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior 

Today was Zac's monthly infusion day at @uhrainbow - it all went so smoothly and as pain-free as we could've prayed for.

We also met with his nephrologist who gave us more good news:

1) As of now, Zac no longer needs his at-home injections. 🙌

2) In the past 1.5 months urine protein levels have dropped from 4.32 to 2.35. This is GOOD!!

3) Zac's kidney function went from 30% in November to 31.8% today!

4) Zac's inflammatory markers went from 415 in October to 242 today. Again, GOOD!!

5) We adjusted his BP meds a little and are hoping to see his BP drop. His BP is a little high because of his kidneys. We're continuing to pray for more improvement on the kidneys as we'd love to see him be able to get off the BP meds.

6) No labs until his next infusion in January 🙌

7) Spoke with his rheumatologist office and he is happy with the labs, as well. So he's dropping Zac's prednisone down from 10 MG to 7.5 MG. Slow and steady will be the name for this last bit of steroid weaning. 👍

Now, non-medically speaking:

1) Zac's art class at @mcaknights created Christmas cards and Zac brought them in to be distributed to the children at the hospital. So proud of Zac and his classmates and their hearts for the Lord and to share the hope of Jesus with others. ♥️

2) Zac's Budsie that he created during his last hospital stay in September came back!!!! Zac's drawing of @stephencurry30 is officially Stuffed Curry!!! They did an awesome job creating an exact replica of Zac's drawing and even included Zac's signature and Steph's tattoos. Sooooo sweet! It made Zac's day. So thankful for the art therapist working this with and for Zac. 

3) Ellie did an at-home school day with her aunt - a former school teacher AND who homeschooled her 2 children straight to college. I'd say she's qualified. 😉 These infusion days are Ellie so I'm a little soft on her. A little extra love for an extra concerned sister.

We're home and so thankful for everyone that prayed for Zac today. 

Psalm 107:1 ESV

"Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!"

 #granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior 

It's officially Thanksgiving break and my kids are taking full advantage 🙌 Zac is playing hard and his sister is LOVING it.

We're enjoying seeing the mess and hearing the laughter and imaginations at work.

Psalm 95:1-3 ESV

"Oh come, let us sing to the Lord; let us make a joyful noise to the rock of our salvation! Let us come into His presence with thanksgiving; let us make a joyful noise to Him with songs of praise! For the Lord is a great God, and a great King above all gods."

Shared from Mandy’s social 11/18/24…

Monthly infusion day University Hospitals Rainbow Babies & Children’s Hospital was today for Zac. He had a rough start with the IV insertion (his veins are a little tired from so many pokes) but then we were set. Labs were drawn, Cytoxan given, Mesna administered and Pentamidine nebulized (I'm making words up to make them fit in this paragraph). 🤪

Zac's nephrologist was in this morning and said his kidney function is at 30% today, per labs. This takes Zac officially out of stage IV CKD and places him at stage 3 for now. She believes we can see even more improvement. 🙌

His creatinine is down to 1.86 - when we were admitted for the first time Sept 1st, his creatinine was 1.67 so we're almost back to that number. 🥳

His blood count has improved so much that we can go down to 1x a month for the home shots (huge relief for Zac). Side note - never ask him about these because his stories about how I administer them are a product of his VERY ACTIVE IMAGINATION. None of them are true. I am gentle and kind. 

His nephrologist also put him on a "lab holiday" - no labs until we're back in December for the next infusion. Yay!!!! His veins will have a chance to recover a bit. 

Zac's rheumatologist also advised that he reviewed the labs and he's pleased with how the numbers are all trending. 

We're home and so thankful that Zac's once again responded well to the treatments. He's in great spirits - he's a continued inspiration in persevering through whatever is thrown your way. He still smiles. He still jokes. He still loves fiercely. Our Zac is still there. ❤️

Zac also attended his first ever concert with one of his favorite artists - the one and only TobyMac - Saturday night as a sweet birthday present. He had a BLAST and it's a memory he will keep with him forever. 

Psalm 9:1-2 ESV

"I will give thanks to the Lord with my whole heart; I will recount all of Your wonderful deeds. I will be glad and exult in You; I will sing praise to Your name, O Most High."

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior

We had a full week of doctor's appointments, labs and first official 6th grade basketball practice for Zac. Whew! We ended it with a family night at home where we did some canvas painting.. Of each other... It was something we've never done before and you can tell who is the artist in the family (hint: it's not me!). 😜

When it comes to the medical side, for the most part, we're moving in the right direction with Zac.

Zac is doing well, physically, and the doctor's are pleased to see that. His body has had a lot thrown at it in the past 2.5 months and he's handling it better than expected. He'll head back for his monthly infusion in a little over a week. 

However, his blood pressure is still elevated, despite the lower steroid dosage. We've added a new med to help with that.

Zac's kidneys are still needing prayer. We're at a point where we aren't sure if Zac is plateauing or if we'll see the numbers trend down (improve). Please help us pray that we'd see some major improvement within the next month.

We're so thankful for the medical team at @uhrainbow working together to help Zac heal - we know they are all a blessing straight from the Lord.

We're thankful for so many folks that are praying with and for us.

We're thankful for our family time. 

We're praying we see continued improvement in labs.

We're praying for miraculous healing in his kidneys. 

We're praying God is glorified through all of this.

We're praying that we continue to turn all our worries over to Him.

Matthew 6:34 ESV

“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble."

It's been a few since I posted an update - we've been settling into our new normal and it's been bittersweet. We've seen Zac go back to playing and being as close to his "old self" as he's been since this all started. BUT we've seen how this disease really affects him when it comes to energy. He just doesn't have it like he used to. He can't play from sunup to sundown anymore. He has to stop and rest. That is an adjustment for me to see. This boy has NEVER stopped until his eyes closed in sleep. 😜 But what a blessing that this is the only "side effect" we're seeing. It's not even a "bad" one. We knew that, sooner or later, our high energy kid would settle down.

We have been tapering down, slowly, on his steroids and are at the halfway mark. We've seen no side effects from that, other than seeing his moods level off and his hangry moods decrease. 🙌 So all good things.

It's an essentially harder week as he has 4 appointments, in 5 days, with 4 different doctors. 2 are "normal" exams (optometrist and orthodontist), but it involves us getting them up to speed on Zac's new diagnosis and all the treatment that goes with it. He'll also meet with his rheumatologist and nephrologist. Throw in a set of labs and it's a little daunting for him.

Through all of this, we see Zac continue to smile and laugh. He plays, runs, wrestles and does all the things boys his age do. He CAN do it, so he does. Does he get tired a little quicker? Sure. But that doesn't mean he can't do them.

He ended the 1st qtr of school well. He's caught up (did he turn in assignments late? Yup.... Because, well, he's a 6th grade boy) and he's working so his schoolwork. He finished the quarter with an amazing GPA to go along with his GPA diagnosis 🤪

He's hanging with friends and he's ending every evening with his Bible next to him on the bed. I love him. I wouldn't change any minute or any decision made in my life to avoid this. 💕 God's plan is the best and I rest in Him.

God is so good, God is so good. He's so good to me. 💕

Ok - so I know I've put Zac's official diagnosis on here, previously, but I've never really discussed WHAT it is. So I'm going to give you a condensed version, but you can view the longer version here: https://www.vasculitisfoundation.org/education/vasculitis-types/granulomatosis-with-polyangiitis/

WHAT IS GPA?

Granulomatosis with polyangiitis (GPA) is a form of vasculitis—a family of rare disorders characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues. Formerly called Wegener’s granulomatosis, GPA typically affects the sinuses, lungs, and kidneys but can involve any organs. GPA can worsen rapidly, so early diagnosis and treatment are essential to prevent organ damage or failure.

GPA is a potentially serious but treatable disease. Glucocorticoids such as prednisone are used in combination with other medications that suppress the immune system to control inflammation. Even with effective treatment, relapse can occur, so ongoing medical follow-up is usually necessary.

Because GPA often goes unrecognized, researchers believe it is underdiagnosed, making it difficult to accurately determine its frequency.

Serious complications may occur including bleeding and scarring of the lungs, kidney damage or failure, heart disease, hearing loss, skin ulcers, deep vein thrombosis (blood clot), permanent nerve damage from neuropathy, or damage to the bridge of the nose from weakened cartilage.

STATISTICS:

12-14 cases per million, worldwide in ADULTS

Any onset age, but most frequently ages 40-65

Number of US cases unknown

1-2 cases per million in children

More common in Caucasians

CAUSES:

The cause of GPA is not yet fully understood. Vasculitis is classified as an autoimmune disorder—a disease that occurs when the body’s natural defense system mistakenly attacks healthy tissue. Abnormal function of white blood cells (neutrophils) is thought to be involved in the disease.

Researchers believe an infection may contribute to the onset of GPA, but it is unlikely that an infection alone can explain this complex disorder. Environmental and genetic factors may play a role as well. Research is ongoing, but so far, no specific infectious, genetic, or environmental factor has been conclusively associated with GPA.

OUTLOOK:

There is no cure for GPA at this time, but early diagnosis and effective treatment can bring the disease into remission, and many patients can lead full, productive lives. Left untreated, GPA can lead to potentially life-threatening organ damage or failure. Even with treatment, many patients will experience periods of relapse, so ongoing medical care is important.

If you're still with me, now listen to a few of the amazing ways God has provided:

- Zac presented with "nasal congestion and a runny nose" mid-late August.

- When we took him to the ER on August 31st (due to lethargy, loss of appetite and brown, foamy urine), he was immediately sent to University Hospitals Rainbow Babies & Children’s Hospital where the most amazing nephrologist was assigned his case and she put GPA at the top of her list (WHAT?).

- When Zac had his kidney biopsy on September 2nd, it revealed that the GPA had only been active for MAYBE 1-2 weeks. This disease was BRAND NEW. Zac had symptoms that were fresh AND he was accurately diagnosed in what I feel was record time.

- Zac's kidneys are the only organs affected by the GPA thus far - his eyes, lungs, throat, nose and brain have all been cleared for any GPA activity.

- We live in an area where we have a pediatric nephrologist, pediatric rheumatologist and pediatric immunologist available who know how to properly treat GPA. That's not the case everywhere in the US.

- When we had to head back for a 10 day emergency stay, which started in the PICU, the first face we saw when we got to our room was the doctor who did Zac's kidney biopsy - seeing that familiar face in an unfamiliar floor was a blessing straight from the Lord. It was a scary day but, again, God provided a bit of peace.

- Every hospital stay provided us with a private room - as we were loved HEAVILY with family and friends coming and going, this was a huge blessing. I can't imagine what a burden we may have been to a roommate. 🤪

- Every infusion, injection and medication that Zac has had? His body hasn't had any major adverse reactions. 🙌

- Our family and friends and our church family, First Medina, have been such a source of strength for us. If you aren't plugged into a local church and you live by us, come to church with me this week! See for yourself how amazing the body of Christ is. The way they keep loving us, supporting us and praying for us through all this has been beyond words. If you don't live near me and think you're doing just fine without regularly attending church, you don't know what you're missing. God created us for community - find yourself a Bible-loving church and get plugged in. DO IT! 🥳

              - If you don't know Jesus personally, seek Him. There is absolutely nothing in the world like a personal relationship with the Savior of the world. I would not be here right now, if it weren't for Him. The past 2 months have not been what we had planned BUT He has provided strength, peace, rest and joy every single day and it's ONLY because of Jesus. I'm happy to talk with you about Him!

- Zac attends a school, Medina Christian Academy, who has been so supportive of him doing what he needs to do to get healthy AND supported him academically. We have had families throughout the entire school (from elementary through high school - some families we don't even know) flood us with prayer and support. What other school would ever do this? If you're looking for a private Christian school for your kids, check them out. ❤️

- Zac has shown tremendous character throughout all of this. It can't be easy on him to have his carefree childhood thrown to the side. He now has a lifetime of doctors and labs ahead of him. Yet, he has shown that his trust is in God. He's been a source of encouragement to me - to see his faith walked out has been a blessing. He's back to school and even gearing up for his first ever basketball season with school. He is PUMPED and ready! 

God continues to provide for us - His blessings can't even be counted here. The above list is absolutely miniscule in how He has blessed us. The peace I've had from the very first minute in the ER to this current moment is beyond measure & comprehension. I've had unexplainable joy throughout this new chapter of our life. The overwhelming continuous thought I've had is "Zac is God's. God's plan for Zac is PERFECT". None of this is a mistake. There is a good plan here for God's glory. 

This was read this past Sunday by our worship leader and it brought tears to my eyes - I look forward to this promise written in the Bible - Earth is our temporary home and a time is coming when there will be no more pain, no more sickness. 🙌 This also has special meaning as the book of Revelation is Zac's favorite book in the Bible. ❤️

Revelation 21:1-5

"Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be His people, and God Himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." And He who was seated on the throne said, “Behold, I am making all things new.” Also He said, “Write this down, for these words are trustworthy and true.”

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior #TrustJesus

1st outpatient chemo infusion is complete. Zac did great - a Lego set complete, some homework completed and some singing to music on the way home. 🙌

There are many things to be thankful for (not in order):

1) Jobs that give us both the freedom to be with Zac on these days. 

2) Friends that give Ellie a fun option for these days (before and after school) so that she has fun, mixed in with school.

3) An IV insertion so amazing that Zac didn't even feel it. 🙌

4) A beautiful sunny day.

5) Our constant prayer warriors, praying faithfully with us.

6) Zac's body handling these drugs without adverse reactions thus far.

7) Coming home afterwards.

I could keep going, but honestly, I'm just thankful. So thankful. God is good, gracious and faithful. He continues to provide for us - He is all we need.

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior

Zac had a good nephrology appt today, 10/16/2024 - we can begin lowering his prednisone by 10 MG per week, beginning tomorrow 🙌 we've officially entered maintenance mode (not remission, but we're no longer in fight mode, basically). We went over a lot of numbers from when he was first admitted/diagnosed, to his worst numbers, to his current numbers. It was great to see how God has worked and we're super thankful for the medical team God's given us. They're doing amazing work in how they're managing Zac's care. 💕

He has his next cytoxan and pentamidine infusions on Monday, Oct 21st. It's an 8 hr appt, so a long day. Tuesday will probably be a little rough but prayerfully not.

Zac's doing great - he's in school, playing with friends, playing with his sister and our dog. Life is as "normal" as it can be for him and we love to see him laugh and joke. I'm enjoying seeing him play and be energetic. 

Again, so thankful for all the ways the Lord has shown us He is sovereign. We continue to rest in Him. 

We celebrated going a whole week without seeing the inside of the hospital!! It's the longest we've gone since August 31st. 🙌💃🎉

Ice cream for all, including the dog (who couldn't be bothered to even GLANCE at the camera).

We will celebrate it all. Every single blessing. God is great and greatly to be praised.

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior

Had a nephrology appt today and it was all good news!!! ❤️ ❤️

Zac's numbers are all going in the right direction and we are THRILLED. We will continue to monitor numbers with weekly lab draws, monthly infusions and daily meds.

He got the ok to ONLY watch his sodium and stop monitoring his potassium and phosphates. 🙌

We have a bit of PTSD with doctors the last few weeks so today's appt was so exciting. Such good news!!!

Zac went to school today in between the visit and was happy to be back with his classmates. It's a good day, folks.

Isaiah 55:12 ESV

 “For you shall go out in joy and be led forth in peace; the mountains and the hills before you shall break forth into singing, and all the trees of the field shall clap their hands."

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior 

Time to GET LOUD!!!! Zac's creatinine continues to drop. This is a GREAT thing. Praise the Lord!!! 🙌🙌🙌

He had labs done this morning and we got the good news this afternoon - it's Wednesday and a good day for good news!!

Zac headed off to youth group tonight and will head to school tomorrow. Pray for him as he gets back into the rhythm of schoolwork. He has been in school for only 13 days this school year. He will feel behind and a bit lost, I'm sure. Pray for him to give himself grace, for the Lord to give him the wisdom he needs as he works hard to catch up, and for patience for himself, his classmates and his teachers as he heads back.

He's excited to get back to "normal". That will include all the frustration 6th grade schoolwork brings 🤪

God is good, y'all - He is so very good. All the time.

#wegenersgranulomatosis #granulomatosiswithpolyangiitis #wegenerswarrior

One of the biggest struggles since we've been home has been FOOD. Zac has a never-ending appetite but a very restrictive food plan. We hit Meijer tonight and combed the aisles for some affordable, yet viable, options. Zac looked over food labels as well, taking responsibility for what was a good option and what wasn't. We left with a son who is actually excited about his food. 

Of course, he chose the tortilla chips to snack on the second we got home. 😂 It's the little things for him. He's missed tortilla chips. Now to find him some homemade salsa that's low sodium! 🙌

Another win was that he ate broccoli with his dinner - a veggie!!!! And he ate a full serving of it. 💃

At this stage, we take every little win. We celebrate them.

God doesn't forget us, even in these seemingly small mundane moments. I see Him helping, guiding and providing every day. He is faithful, in big and small moments. Thankful for the peace He continues to give us and for the joy He provides every day. He is so very good. ❤️

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior

Zac has been enjoying being at home. He's loving his panda costume (huge @dudeperfect fan, so he used some birthday money to score this!) and even tried to get Maizy involved but she's not a fan 🤣

He had his yearly "well child" visit today and she asked how life was, other than the last month. Even Zac was like "Um, perfectly fine." Basically, granulomatosis with polyangiitis (formerly Wegener's) has consumed our life for the last 30 days. If it wasn't for that, we'd be the most boring people ever. 🤪

Our biggest hurdle right now is Zac's food - he's on a low sodium, low potassium, low phosphate food plan (I will not call this a diet). As he's a typical 11 year old, he wants all the things a typical kid wants - pizza, French fries, Mac n cheese, chips, granola bars, goldfish, corn dogs, etc... All things that are NOT good for his food plan. Because we're being gentle to his kidneys and he has high blood pressure, we can't do high protein either.

Add in his steroid dosage and you've got an absolutely ravenous 11 year old boy who's having a hard time finding foods that not only does he WANT to eat, but that will actually fill him up and stay within the guidelines. 🤦‍♀️ BUT we're determined to do this. We're not the first and we won't be the last to do this food plan!

Zac has labs on Wednesday morning and a nephrology appt Thursday. All just routine (we're on a continuous "routine" for checkups and labs) for Zac. He's sad about more pokes.

But this is all to get the GPA into remission.

Zac's brave, strong and keeping a positive attitude about it all. ❤️ So thankful for the hard years we've already put in discipling him and that he's digging into the Word with daily devotions - turning to God and keeping his focus on the One who loves him more than anyone else. 🙌

#granulomatosiswithpolyangiitis #wegenersgranulomatosis #wegenerswarrior 

Zac is home!!! He and his family are surrounded by the most amazing family and friends…near and far!!! Thank you for your continued prayers and for all donations!!! Forever grateful!!

Plasmapheresis started late today, which meant his Rituximab didn't start until about 6:30 PM (mainly because of timing of meds given before the plasmapheresis and meds that needed to be given before the Rituximab - there needed to be a set amount of time between the two so we had to wait. Thankful for a nurse who paid close attention to those details and made sure everything was done safely 🙌).

The Rituximab will run until about 1:30 AM. They'll watch for any adverse reactions throughout the night and then, as long as all is well, we will be discharged first thing in the morning. 🎉

I'd like to take a minute and say I'm so thankful for the staff here at @uhrainbow. The PICU staff was amazing last week for the 3 days we were with them and the floor 5 nurses have gone above and beyond for the 7 straight days we've been with them. I have seen them advocate for my son on their own. I've advocated for him, and they are always willing to do what they can to make sure I'm happy with the care being provided and that Zac is comfortable and as happy as possible here.

The doctors? They never rush when speaking with us. They take their time to explain everything. They'll even stay and chat for a few to make us feel like we're not just another $$ on their rotation. They've popped by to just check in, not to consult, but to see how Zac's doing and have a purely social visit.

I'm so thankful the Lord brought Zac to @uhrainbow. We appreciate the entire medical team, the hospitality staff and everyone we've met. From the front desk greeters, to the cafeteria workers to the gift shop folks to the people that keep our room clean - we appreciate their smiles and helpfulness. They were able to bring joy to an unplanned hospital stay.

God uses everyone. You never know how you are affecting someone else's day. A simple smile, a sweet greeting, a job done cheerfully? All of this makes a difference, especially when someone is going through a THING.

Matthew 5:16 ESV

"In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven."

Today is a long day for Zac - he has his 5th and final plasmapheresis this morning (prayerfully this morning 😜) which takes about 2 hrs total, followed by his 7 hr rituximab infusion. They will then observe him for a few hrs afterwards for any adverse reactions.

Pray for a smooth day and that both treatments go well with no adverse side effects. Pray for Zac to have strength for today. Pray for these treatments to do what they need to do in his body. Pray for healing.

Pray that we continue to be a light for Jesus to everyone that crosses our path.

He is a good and gracious King. I am so thankful for all the ways He has held us up, sustained us, encouraged us and blessed us this past month. May His name be praised forever and ever. 🙌

Psalm 28:7 ESV

"The Lord is my strength and my shield; in Him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to Him."

Psalm 73:26 ESV

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever. "

Psalm 59:16 ESV

"But I will sing of Your strength; I will sing aloud of Your steadfast love in the morning. For You have been to me a fortress and a refuge in the day of my distress." 

1 Chronicles 16:11 ESV

"Seek the Lord and His strength; seek His presence continually!"