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Operation Reboot Hunter: His War Against CGD, Dinwiddie, VA (2025)

02/28/2024

I have thought many times to post and.... yeah sorry! As it crossed my mind just now, I went straight to our Smyrna monthly newsletter and copied the update from there....

Thank you all for your sweet words of encouragement and prayers! The last month has been challenging. Extremely challenging. Hunter knows the transplant failed to cure his disease. Praise the Lord for His mercies on Hunter’s heart! How a young child can hear unwanted news yet walk away smiling is a testament to God’s work. I am not sure who was shocked more, the doctors or myself, during our recent 1-year post transplant trip. Hunter and I, 3 doctors and 1 nurse filled the room to tell us that the transplant did not cure Hunter from CGD. Then… Dr. Malech told us although not a success for Hunter, they have had success transplanting patients. I cringed inside and lifted my eyes to Hunter, holding back the crocodile tears that wanted out. Hunter had a smile on his face. Why? Because he was still happy for others who the procedure did help. No words fit to express how grateful I am to witness my son’s faith keep him positive! Mindset is crucial during medical journeys. Praise God, for the strength and courage He has placed in Hunter’s heart.

02/06/2024

The last 32 hours have been a whirlwind. We went to NIH, did lots of testing today, and returned home 2 days before anticipated. Hunters good. We are good. We are exhausted! Thank you for your prayers! Update coming but for now 🥱😴

02/04/2024

Happy Birthday Brianna! 🥳🩷🎉 We have celebrated this wild girl all week long! Last year this time, she and I were struggling so much being apart, especially on her birthday. We made sure to recognize all her support through this journey. She doesn’t go far from me and constantly keeping tabs when we are apart. At times it drives me batty but I know it won’t be long before she’s too cool for mom.

We are so proud of you sweet girl! You have a kind heart, love deeply, and shine bright! No doubt you keep us on our toes. From the 4lb 11oz tiny baby to the beautiful daughter you are - may God shine through you and continue to bless your path! 🥳🩷🎉

01/30/2024

The last couple of months have been hard. Real hard!! Lab results came back days before Thanksgiving. Not good. Devastating. You never want to hear “I’m sorry…” from a doctor. Basically, considered as a graft failure. Transplant failure. Days before thanksgiving, no way we could tell him. I could barely process the news. A week or 2 goes by, more not nice news. Jason’s employer is closing the area he’s been in for over 15 years. I like surprises but definitely not that kind?! Can we return that unwanted gift?! 🙃 Our family life has become our best yet! We homeschool. The kids go with me “to work (more like craft and all things fun!!)” at church. Jason is working all days after 14 years of swing shift. We have a family life! So now what?! We decided to continue life as we have come to know. Mom’s not going back full-time. Kids aren’t going back to public school. Our family - our choice - our sacrifices! It brings us joy in the midst of many trials.

With the holidays approaching, we withheld the news to protect Hunter. He had faced plenty already in 2023. He needed to have a joyful holiday season. And he did! We were so thankful to watch him be a kid, no doctors, no needle sticks, just a kid with a huge smile!

Today, we told Hunter. I was so nervous and scared. He teared up. Said NO! Buried his head. Ask what made it happen (number dropping so low)? I was steadily reassuring him it was nothing he did. We don’t know why but we can be grateful! God has already given us the knowledge and tools to live a safe CGD life. We go back to living as we have always known - nothing new to learn. He asked, “do we have to go back there to live long time again mama?! I don’t want to go through all that!” I let him know for now Dr Malech doesn’t recommend another transplant. He was relieved. I pointed out to him, Moose got up in the chair, laid across Hunter seconds before we started our talk, and Moose wouldn’t budge. 💙 Moose is protective and constantly checking where Hunter is. Moose could sense something was up. We talked about the scripture laid on our hearts in the hospital, Joshua 1:9. Hunter was afraid during, discouraged by today’s news - God knew the scripture 12 months ago we needed to cling to this entire journey! When I tucked him in bed, I told him how strong he is and this isn’t what we wanted, but it’s God’s timing. It’s hard for us to wait, we don’t want to. God has a purpose! His journey is reaching further than we can imagine to serve His purpose! I got choked up telling him how proud I am and he is stronger than anyone I know, he’s my superhero 💙 After service Sunday, he and I will travel to NIH where he will undergo 1-2 days full of testing for the 1 year checkup. Hunters journey is not over, he’s just begun 💙

Your whole world’s in His hands
In the darkness and the trials
He’s faithful and He is true
The whole world’s in His hands

11/06/2023

That time again. Not a fun time but he understands the importance.

Please pray for a chimerism of 10 or above!! The waiting game begins but we know our Heavenly Father knows Hunters story 💙

10/28/2023

As you may have anticipated, the last test results came back down slightly from before. He has now fallen to 6%. What does that mean? For now, we keep operating as we have. Jason and I cannot get caught up in the million "what if's" for our sanity. We know God is in control and thats best medicine we can ask for. Another testing kit arrived on our door step this week to be completed in the upcoming weeks. While this is not the news we wanted... Our son is alive! Our son is mentally and physically healthy! Our son is enjoying life! We are blessed 💙

09/26/2023

Hello friends! We are so very grateful for each of you! Your sweet text and reaching out over the last few weeks helps us more than you can imagine. We are stuck in a waiting cycle constantly. Imagine putting your life on Hold - for months. Yeah, even living smack in the midst of it, it's still hard. Last Monday, we took this bag with 1 single tube to the lab. This single tube has such an impact on our lives. As always, Hunter jumped up in the chair, chatting with his lab buddy, all while this small tube was filled with his precious blood. Carefully packaged back up, with extra padding, and mailed back to NIH. We waited until the confirmation the following day, which was good news, the tube made it intact and safely to NIH. A sigh of relief. Now for the longggg wait. We are 7 days into waiting and still waiting. I tell myself maybe Friday - it's a mental game at this point. We've been through this too many times - we can mentally exhaust ourselves or we can mentally seek joy in our lives. Personally, positivity is the route I desire. Some say they don't know how one can possibly stay positive. It's simple - in God we trust! God intimately knit our bodies in our mothers womb. God placed me in this journey long before either of my boys were a thought in my mind. God deemed us capable of handling the care and concerns of Trevor and Hunter's lives. While I do not feel worthy of either our sweet boys, God knew their struggles, their triumphs, and He blessed our lives with them. I do not understand the many why's, I am not meant to, and I'm okay with that. God entrusted us with loving and raising our boys, His children. We will hear results soon enough, He already knows the results. He knows the results to the entire journey. We must take it day by day, resting in His love, and trusting His plan. Yesterdays is gone - don't get caught up in what could have been, tomorrow is not here yet - don't get anxious and fearful of things beyond your control, remember to truly live in the moment - loving and living with those you love!!

p.s. we will post the updated results once we have time to digest and share with our families.

08/02/2023

An update on Hunter:

We talk with NIH. While it wasn’t what we wanted to hear; it was. Yeah it’s that complicated. They tested him the Monday (6/26) he started the campath shots - chimerism was 8%. When we went last week, the chimerism was 8% - stable. The DHR was also stable. Per protocol/transplant team, it’s considered a graph failure - failed transplant. Per Dr. Malech considering more than just the #, it’s considered a win against CGD. Do you see how confused we are?! Although I have confidence in both teams, transplant and CGD, my trust is in Malech. The DHR is stable is what he is basing his result on. DHR is THE test to diagnose CGD. If Malech is looking at the DHR and saying transplant is successful, let’s keep moving forward on the after transplant rules, worrying about another transplant is off the radar - for now. We will travel back to NIH for bloodwork and CT next week. If both test remain stable or improved - it’s a positive outlook. Hopefully you join in seeing the light in this. While we could easily say “under the magic number 10” and fall into the negative, ugliness trying its best to grab ahold to our emotions. This a is miracle! This is God’s miracle - defying the threshold number of 10 - yet CGD is not in control!

08/02/2023

11 years, 7 hours, and 14 minutes 💙

A part of our hearts stop beating that exact minute along with Trevor 💙 A loss you never recover from. A loss your brain can’t fathom. A loss detrimental to your existence. 💙 By God’s grace, our lungs fill one breath at a time and our hearts lean on Him to continue beating to face another minute, another second without our precious baby boy! 💙

07/19/2023

Thank you for all the prayers! We made it back home yesterday. Not the news we’d hoped for but until we get 2 test back we can’t say transplant failed. They do have us back to all the CGD meds and rules.
We are at the mercy of the 2 test: chimerism tells us % his cells vs donor; DHR is used to diagnose CGD. Until we have those results we can’t move forward either way. But they were talking steps of gene therapy or traditional transplant. By Gods grace I held myself together in front of Hunter. We left the conversation in that room. We aren’t there yet. He hasn’t been negative so I will take that as a win for now. Results are expected next week.

07/16/2023

Happy Sunday morning!! I hope you have a phenomenal church family, even a small group to support you on a deeper level as you do life together, that you lean on in times of uncertainty. I could say our trip to NIH this week is a 1 day visit - we drive up tomorrow, a hotel overnight stay, then Tuesday is bloodwork and a CT scan then we return home. While yes this is 100% true, the magnitude of this visit has no words to illustrate the importance.

The detailed view of this visit:
1- CT scan - they are rechecking the fungi lung spots. Last time the spots reduced enough to remove 1 anti-fungal drug. Have the spots remained unchanged? decreased more (great!)? increased in size?

2- DHR test. This is the test preformed to diagnose CGD. Will his test show his neutrophils are responsive (no CGD)? or will they remain unchanged (CGD in control)?

3- Chimerism. Test measuring the percentage of donor cells in his body. Last check, he was at 15. The threshold is 10 - must maintain above 10 for the donor cells to be "in control" of his immune system.

HUGE, huge testing!! Results will dictate how we move forward. I would love to be able to say - the transplant was successful the day we returned home the end of April but.... that's not how the process works. The body takes at least a year to stabilize itself enough for transplant daily life rules can be behind you and transplant was successful. We are at the 6 month mark - July 18th to be exact. We could find we are still in the positive this week, that the shots a few backs worked to stabalize his graft or even better- increased! Or the opposite could be found - his graft has continued to lessen and the transplant be deemed unsuccessful - didn't work - which would leave the question of do we put him through traditional transplant with chemo?! understsanding this does not guarntee a successful transplant. Another CGD patient who underwent traditional transplant while we were there for Hunter's is in the same boat as us right now, that family also elected to give the shots a chance. So see CGD is fierce and extremely difficult to cure. In both boys, their CGD cells have steadily increased, diminishing the healthy donor cells.

Jason and I have lived a medical dictated life for 11 years now. We do our best to stay positive and seek positive results, yet we have experienced both worlds -good and bad- so we know for the protection of our hearts, our minds, our life - we can't be ignorant to the medical efforts being unsuccessful. The lows of our past have come with great pain in so many ways. If you run into us the next two weeks and we seem distant, quiet, withdrawn - it's not you, it's not directed towards you, it's how our past has lead us to how we handle these big factors today. Give us time, give us grace, give us space. Don't take it personal. We are living life the best we can, we are united and highly dependent upon each other. People say hardships of losing a child, facing medical diagnoses - most couples tend to stray from each other. I can understand that, I have witnessed that, but thank you Lord for pushing us closer! We will face the upcoming days, weeks - one step at a time, choosing to seek positivity, and celebrating the joys of everyday life! 💙

07/02/2023

Happy Sunday everyone! I pray you attended Sunday school and service this morning at your church home! Refueling on Sunday gives me the ability to face anything this world has to throw at me over the next 7 days. This morning was a bit stressful for my germaphobia but I kept that to myself. We have always watched out for bacterial and fungal organisms but now… For now viral infections are the most detrimental to his health. He’s a kid. You know kids are walking germ factories! 🦠 We agreed he could attend Sunday school- mask required and if anyone were to have the sniffles he had to leave. Thankfully we have amazing parents who keep their germ factories at home to recoup and not share the wealth of green - 🦠 snot 🤧 that is 🤣

What’s next?! He and I will return to NIH in 2-3 weeks for repeat bloodwork and CT scan. If you’re wondering, I have not looked in the portal still ☺️ I’m doing what I need to keep the little bit of sanity I have left intact. My instincts tell me when it does result, the Dr’s will contact us. Until then, we will continue to enjoy each day to the fullest, living the best life for the 4 of us 💙

06/30/2023

Pre-meds given! Last shot soon, 1-2hrs observation, then home bound!!! 🎉🎉

06/30/2023

✅ 4 shots down

✅ CT - Looks good! His lung nodules have decreased enough to stop the secondary anti-fungal! Daily meds reduced by 1 👋💊🎉

✅ blood work came back great!

🟢 1 shot to go 🎉🎉

Dr. Kang stopped by to see Hunter. She is pleased with everything. Since the nausea has been only that once – if tomorrows shot is on time, probably can leave tomorrow evening or we can wait until Saturday morning if we prefer. All based around traffic - NoVA + holiday traffic 😳

💙 I have not ask about the chimerism and they have not mentioned anything either. It’s possible it may not be back, they don’t hold back info - -especially of that importance. But - I decided I will not stalk the portal – constantly looking because that just ups my anxiety and makes a the black cloud over me and my attitude, consuming all of me. No amount of worrying will change the results. 💙

Frankly, I’m dang proud of myself! I have no temptation to look in the portal. Self-control is a struggle especially when my emotions are intertwined - and we are talking about my child’s life. As I was processing this in my head, all I can say is Thank You Savior for loving me! We are to read scripture, to be studious and diligent. It’s imperative if you want to live a positive and joyful life! You have 2 choices: you pick up your Bible and attend church or you don’t. We have tons of gray areas today but God has made the most important question you must ask yourself plain and simple: will you or will you not follow Christ? There’s no middle ground. If you find yourself in the middle, let’s talk! I’m serious - reach out to me!

Back to today… I won today kicking fear, anxiety, worrying - weakness - out because of scripture. Joshua 1:9 Philippians 4:6 Isaiah 41:10 Psalm 55:12 Applying scripture to every day life, and more so when emotions are at a peak, will give you the strength and courage to overcome the weakness wearing you down. And that “win” is a mighty win! It’s a powerful victory!! It makes you want to go back and read more, study more because living a life in the light is thrilling, it’s exciting, it’s breathtaking! Thank you Lord!❤️

06/28/2023

✅ 3 shots down

✅ CT complete

🟢 2 shots to go

🟢 blood draw tomorrow morning

💙 Counting down the moments until we return to dirt roads, green fields, country air, laid-back country living, a wild redhead, and our hardworking hubs/dad - All things we are blessed with living on Spring Place farm!

06/28/2023

Well all was well with Day 2 of the shot until 9:40pm….. 😔

Nausea. Oh how I have not missed you at all. I spent the last hour cleaning up vomit, wiping down the room, changing bed linens, using my hair leave in conditioner as air fresher. His eating was a bit better today. He got bored this evening so taking meds was a full on mental game. He had 7 down and 1/2 pill to go. The half pill got him and up came everything since 5pm. Now he's passed out and I'm wide awake. I'm going to lay here close my eyes and talk to the One who knows all my feelings right now and He doesn't mom shame me for my frustration - no one enjoys cleaning vomit, no one enjoys attempting to reason with a child who's so anxious bc does this mean an IV? Does this mean retaking all the meds?! Son I don't know those answers, slow down and 1 thing at a time starting with you calming yourself down! I kept my composure for Hunters sake. But I will repeat what I said at Bible study last week, "I can control what comes out my mouth (majority of the time) but I can't turn off the thoughts in my brain." Doesn't make me a bad mom; makes me the fleshly (not sure that's a word but I'm rolling with it) sinful human I am. Praise God for loving me despite all my flaws and failures.

06/27/2023

Day 1 ✅ 4 to go. Today has been long, hurry up and wait, exhausting. But... pre-medicated then 30min later got his first shot... none of the horrific side effects (fever, rigors, nausea, vomiting) he experienced during transplant. They did draw another chimerism this morning but that will take at least 48hrs to result. A follow up CT scheduled for Wed afternoon to check the nodules in his lungs again.

He’s in good spirits! You know the typical question marathon from nurses and Drs. Then the Dr ask him if he had any questions, “Just 1 - what are the rules when we leave?! VBS is in 2 weeks and VBS decorating is next week. My friends and I love helping decorate.” He may have lots going on but he’s more concerned about being home to attend VBS! 💙 Love that’s where his heart is focused 🥰

06/25/2023

Transplant life is one where you don’t make any plans except from the next moment you’re standing in. As we wrapped our minds around the next step, I caught myself wondering what if he drops below 10 before we go?! But I quickly refused to allow my thoughts to spiral down that dark path. Glad I wasted very little time there because Thursday a call from NIH changed our plans. They want us to be there Monday, June 26?! A week earlier than originally scheduled. Okay! I sat there on the phone listening to the information and was thanking God for answering the lingering concern. Trust! When we let go of control and hand over our vulnerable selves to Christ - it is then we can have peace and know He will always protect and provide for us!

Tomorrow we will join our church family for Sunday school and worship before heading north for our week stay. Being in the house of our Lord getting refueled for a long week ahead will give us the strength and motivation to face all the challenges ahead. Please pray for a smooth week for Hunter and the regimen will stabilize or increase the donor cells in his little body 💙 The step beyond that is a long and hard one but we choose to focus on this week, one day at a time 💙

Operation Reboot Hunter: His War Against CGD

02/28/2024

02/06/2024

02/04/2024

01/30/2024

11/06/2023

10/28/2023

09/26/2023

08/02/2023

08/02/2023

07/19/2023

07/16/2023

07/02/2023

06/30/2023

06/30/2023

06/28/2023

06/28/2023

06/27/2023

06/25/2023

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