(Read 1 Samuel 17 for the full story)

I was reminded of the classic David and Goliath story this past week. Though it’s a story I’ve heard dozens of times since I was a little kid in Sunday School- this week it hit me differently. I suppose it takes a Goliath in your own life to fully relate…

To quickly recap the story: 1 Samuel 17 spends a significant portion of the text describing just how big Goliath is, decked out in armor and terrifying the entire nation. No one wants to fight him (who would?). David, a mere shepherd at the time, puts his trust in God and volunteers to take him on. He believes that God will “deliver Goliath into his hands,” and points to the fact that he has already fought off lions and bears while protecting his sheep. In David’s mind, Goliath is no different. With this almost insane level of courage and faith, David goes out to face the warrior—not with armor or a sword, but with five stones and a slingshot—and ultimately takes Goliath down.

Zach and I have three main Goliath’s in our lives right now- any one of which might be considered overwhelming by themselves, but all of them hitting at once feels especially like the cruel and scary giant described in the Bible.

1. The biggest Goliath by far (and the reason we are all here reading along), is Charlotte’s brain tumor diagnosis and her subsequent treatment journey (more on that below).

2. The second, is I’m 36 weeks pregnant and about to add a baby boy to our family. Don’t mistake me- this is not a bad Goliath, but still a very big step for our family and life-changing in its own way! Also I am at that point in the pregnancy where I’m not feeling super great which is challenging with the timing of everything else going on.

3. Third, we unfortunately had to part ways with our contractor and were left with unfinished work on a home improvement project, leaving us disappointed, uneasy and needing to regroup.

   

With all of this being said, the specific giant looming especially tall this week is the start of chemotherapy for Charlotte. Tomorrow morning, Charlotte has her port surgery followed by her first chemo therapy. On one hand it’s a blessing that we are getting started with treatment so quickly (think about it- we only discovered the brain tumor on July 24th). However, in the final days leading up to her starting chemo, I have felt like a solider drafted for a war that I didn’t want to participate in. There has been a heavy, foreboding feeling of marching towards danger and that things are about to change. But like a solider, you press on towards enemy lines, because duty calls.

“Doctor fix my brain?”

I’ve had a few discussions with Charlotte about why we are going to the doctor so much. This is a tricky thing for a two-year old. I want her to have some understanding of what is going on but share it in a way that isn’t overwhelming or scary. I also have been very intentional about timing of when to share information- because too much too soon might be confusing to her- but too little might also be confusing.

With that being said, initially I wasn’t sure how much of what I was saying was getting through to her. Think about it- a two year old wouldn’t really know what a brain was because it’s not a body part they can see. However, I knew she understood what a heart was (her play doctor kit and listening to heart beat at appointments), so I first explained that just like the heart is inside of her chest, she has a brain inside of her head. I had told Charlotte the reason we were in the hospital and going to the doctors was because there was a ‘boo boo’ on her brain, and the doctors were going to fix it. I reinforced that she was brave at the doctors. She initially gave me a “mmm hmm” and that was it.

A few days ago, I woke her up in the morning and told her we had to go back to the doctor for a check-up. She looked up at me from her crib and said “Doctor fix my brain?”

Oh my heart…

Those are the moments that hurt and every instinct makes you want to cry or yell, “Nothing is wrong with you, you are perfect!” But…I took a breath, and instead assured her she was right and that I was proud of her for being a ‘big girl’ at the doctors. Her statement did affirm to me that she understood what I had previously explained, but man…I think a small piece of my heart broke off when she said those words to me.

“I Get A Button!”

In the same manner as I explained her ‘boo boo’ on her brain, I waited a bit to tackle the topic of a port. In fact, I waited until the night before her port surgery to even mention what was going on the next day. She was sitting in the bath and I told her that tomorrow we had to go back to the doctors. I explained that she is going to get a little cute button put in her chest. That button is going to have medicine for her brain and make her better. I said her button is kind of like how a snowman has buttons on his chest, but she is going to have only one. She giggled. She looked at me and said “Sticker?” I said “yes, kind of like a sticker but this button doesn’t come off and will be on for awhile.” She nodded as if everything I was saying made sense and was normal…

Later that evening when Zach walked in to tell her goodnight, she declared to him that she was going to “get a button.” We cheerfully nodded and agreed with her as if this was a good thing, but between smiles to her we looked at each other with sad eyes.

Other quick updates:

~Closing the loop on a few items from my last post~

• The full pathology did return and was “anticlimactic” to what I was expecting (neither bad nor good I suppose). It confirmed the exact diagnosis that was previously discussed in my last post: Low grade glioma. Pilocytic Astroctomia/ Pilomixoid subtype.

• Further tests clarified that Charlotte does not have a blood clotting disease (thank goodness). The team has been very thorough in testing her blood factors before her port surgery to anticipate push-back or questions from IR (Interventional Radiology) since a factor or two were testing higher. It was explained to me that at the end of the day/after all of the mixing tests, etc. that though one of her factors (I forget which number) was testing a bit high it didn’t have a meaningful impact nor indicate anything was seriously wrong. Thankfully the Hematology doctor drew me a nice diagram of PT and PTT factors (PTT was the pathway factors testing higher for Charlotte) so I had a better understanding of what they were talking about. Hematology is (as Charlotte would say), tricky!

• Secondary insurance was approved (prayer answered). I still need to figure out the details of how this all will work but that’s a great step in the right direction especially as we dive into Charlotte’s chemotherapy.

• Charlotte had an ophthalmology appointment at Children’s Hospital which established a baseline for her vision and they will be following along every few months (we go back again in January 2027). Overall, her vision seems good for now- the hope is if the tumor shrinks it will relieve pressure on the nerves and thus stop all of the eye bobbling. The longer there is pressure on the nerves the more likely there could be damage so that is what they will be following. It’s tricky because vision tests on a two-year old are only so accurate, but overall she did well with the tests we could accomplish for her age.

  • The appointment was two hours long and by the end she was over it…so when it came time to get a close-up picture of her eye balls you should have seen me and the tech pulling out all the tricks…we bribed, we had her unicorn binki take pictures of his eye, I volunteered myself as tribute as well, and finally DannyGo songs were played to get her through the finish line.

• As an aside, Charlotte had her first dentist appointment during this timeframe (she did great by the way) but it dawned on me when filling out her medical history, that for the foreseeable future I would be marking “cancer” on her chart for even the simplest of appointments. Small things that sting.

I like to share the music that is speaking to me during this journey. In God’s tactful way, He brought me the Song of the Week: Do It Afraid (which is literally my life right now) that references none other than… David and Goliath. It caught my attention because I had already felt the pull towards that story for this post, and recall listening to the music and hearing the words “Don’t run from the giant, throw a few stones in faith…”

So here we go… hours away from facing the Goliath of chemotherapy for our precious daughter. But yet… God is calling us to move forward in faith, to trust Him, even when we don’t feel equipped for battle. He will equip us with what we need. Even if it seems like just a few measly stones. Because the truth is, David didn’t win because he had the right weapons. He won because he knew who was fighting with him.

Immediate Prayer Requests:

• Successful port surgery with minimal impact to Charlotte

• Chemotherapy is wildly successful in stopping this tumor from growing/ shrinking the tumor

• Charlotte kicks Chemotherapy’s “bum bum” (as she would say) - Praying for MINIMAL side effects for our precious girl.

• Strength, courage and wisdom for Zach and I as we walk beside her through the port surgery and chemo…Prayers we stay level-headed as we make decisions that will protect her during this journey.

• That baby brother can hang on a little longer so we can get Charlotte through the starting line of her treatment (Braxton hicks more frequent than I would like right now!)

Thank you for being here For Charlotte.

August 14th marked the two-week point where we we returned to Children’s Hospital for a follow-up with neurosurgery and oncology. While Zach, Charlotte and I drove down to Children’s Hospital (roughly 35 minute drive), I couldn’t help but think about how I would need to learn this route, the parking, and the navigation of Children’s hospital for the future…

Our first appointment was with neurosurgery. The team examined Charlotte’s incisions on her scalp from her biopsy and confirmed the healing was going well and gave us pointers for things to continue looking out for with her healing and eye movements. *Of note, neurosurgery won’t be the lead team moving forward since surgery is out of the question for her tumor, but they will be following along on the periphery and doing a check-in with Charlotte every six months or so.

After neurosurgery, we headed up to the oncology floor, which is a sobering experience when you are leading your own child there for starters and also taking a good look at the other kids in the waiting room. Some older, some younger. Some with hair, some without. Some that were energized, some that looked tired. One boy walked confidently through the double doors into the waiting room while his parents signed him in…which made me painfully aware that this young pre-teen boy confidently knew the routine by now. “How long has he been in treatment”, I wondered. On the other hand there a boisterous toddler (maybe even younger than Charlotte) running around, living his best life, oblivious to where he was and why. The parents were quiet but all smiled knowingly at one another. When you are all on the oncology floor, you don’t really need to say much more.

Oncology Overview

Let me begin by saying, this meeting with oncology was a lot to process. It was certainly a dose or reality after the last two weeks of being back to ‘normal.’ For those following along, I likely can’t answer all of your questions because we don’t have all of the information yet, but I will share what I know and and my interpretation to this point. It’s important to call-out that the full pathology (very detailed analysis) was not completed by this meeting, which left me feeling a bit uneasy. We learned that we may have 1-2 more weeks before that is completed.

I felt a bit nervous waiting for the doctor to come in the room. We got Charlotte situated with the iPad and a “Gracie’s Corner” episode so that we could really focus and pay attention to what the doctor had to say. When he finally arrived, Zach and I both appreciated that the oncology doctor was very patient and giving of his time. In no way did he make us feel rushed or uninformed (despite us taking up a good amount of his time and asking questions and clarifying statements). It was a good second impression of our leading doctor (we had met him once before during our prior hospital stay with Charlotte). From this conversation I will try to break down 1) what we know so far 2) what still needed to be determined and 3) general plan for next steps.

Diagnosis Details (so far):

So far, this tumor is being classified as a ‘low grade glioma.’ (favorable). The doctor explained to us that once a tumor is low grade it doesn’t flip to a high grade tumor (I wouldn’t have thought to ask that question, so that was good to know). He also explained that low grade gliomas are generally treatable with a good long-term survival prognosis. However there is more to just overall survival- a brain tumor can still wreck havoc on the brain/body just by where it is located (*will talk more about that below!).

The pathology findings so far are classifying this type of tumor as Pilocytic Astroctomia- which is an overall favorable prognosis. However, the subtype of Pilomyxoid was described as a slightly more aggressive version and a little more rare (not as favorable). Not exactly what we were hoping to hear regarding the subtype. The doctor also said though spreading isn’t as common in low grade gliomas, they would monitor for spreading through/into the spinal fluid (another ‘not what I wanted to hear moment’), though at this point there is no indication this tumor/cancer has spread elsewhere.

I felt a bit uneasy not having the full pathology report to rule out anything else scary about the tumor. Pathology is definitely a very nuanced science…it’s not as black and white as we think (benign vs malignant, good vs bad)….and has been described to us as a spectrum multiple times which is how I’m learning to view things with this diagnosis. So the way I’m interpreting her tumor is low grade but on the spectrum of low grade tumors, it is potentially a more aggressive version.

I’ve had to mentally wrestle with what exactly aggressive means in this context. Here is what I’m understanding (my medical friends and family can correct me later if I’m wrong!). Though the tumor itself is not an aggressive cancer, what makes it potentially aggressive even if low grade, could be elements like:

• The tumor may grow more quickly than a ‘classic’ pilocytic astrocytoma (it’s a large size for a two year old…)

• The tumor requires more immediate treatment rather than simply being observed (we all agreed to that treatment > monitoring is needed at this point)

• The tumor may have a greater tendency to recur throughout one’s life (sigh)

• The tumor has more danger to spread to the spinal fluid (yikes)

• The location itself makes management more complicated (which is the case for Charlotte- since it’s located on the optic pathway/hypothalamic region)

So even though a tumor is low-grade, in Charlotte’s case it’s medically significant given it’s already impacting her eye/optic nerve. This point takes me back to the doctor’s “real estate” comment: *Where tumors are located in the brain and how much room they take up matters. The Oncologist used a pothole analogy which offered a helpful visual and perspective: A pothole on a back-road is still a problem, but perhaps one that isn’t as impactful or could wait to be fixed. On the other hand, a pothole on a busy road/freeway would be more problematic and time sensitive to fix. That is what we are looking at for Charlotte- a pothole on a freeway. Her tumor is in a location that is problematic (optic pathway/can’t be surgically removed) so they agree that our treatment plan needs to mirror a more aggressive approach than if the pothole/tumor was in a part of the brain that wasn’t quite as ‘important.’

Treatment & Next Steps:

The treatment discussion made me feel anxious at first because I felt we were being asked to make a decision (chemotherapy or targeted therapy) on insufficient data (not having full pathology results)…however after further understanding and discussion from the doctor, we all agreed that the right course of action for Charlotte was progressing to chemotherapy. The pathology results to come would not dramatically change the treatment options, add further classification of the tumor itself. The Oncologist clarified that chemo is still the most standard first step for treating these types of tumors (not to mention the best studied/data). Additionally we could move more quickly to this step vs targeted therapy (I forget why, but I remember him saying it would be more like several months vs several weeks to get that started and we did not feel comfortable delaying). If chemo was ineffective we would still have the option to explore targeted therapies down the line.

Chemotherapy:

Chemo in this case would likely be a combination of two drugs: vincristine and carboplatin. The main side-effects the doc mentioned were:

• constipation

• temporary loss of some fine motor skills (this made me sad)

• nausea

• temporary hearing loss

• lowered immune system

(I forgot to ask about hair loss…but notable that was not in the list of core symptoms he discussed). He did say “it’s not always what you visualize/expect like in the movies” so I’m holding onto hope there.

Chemo (generally speaking) would start with 12 weeks of treatment, 1x per week. It seems like depending on the medicine being given (not sure if they administer both at once or alternate) it could last half-a day or sometimes be shorter. However he set the tone to expect 14 months of treatment in total with chemo with MRIs every 3 months or so to track progress. Again though I completely understand that MRI is the tracking tool for progress, this left a pit in my stomach because it requires Charlotte to be intubated each time and thus recover from that experience, etc. Hearing all of the numbers and timeframes projected definitely made this start to feel more daunting.

Then we got to talking about the port. Even though I had mentally prepped myself for this, the conversation still hits when you start making a plan for that as a next step for your child. I obviously understand the need for the port. Chemo would destroy Charlotte’s veins and the port avoids her being stuck with needles over and over again. However, it was yet another surgery she would go through and thinking about a port being in her skin for a long period of time is also sad…

Tentatively the port surgery is scheduled for the first week of September but it might be pushed dependent on IR’s availability, PTT results (see below for more info) and the rest of the Path.

The other stressful thing that was mentioned was once the port was implanted and chemo began, FEVERS become more serious of a matter. In a ‘normal’ situation, a parent would manage their child’s fever at home (for the most part), but now a fever equals a trip to Children’s emergency department. I am already dreading flu and cold season thinking about this and could anticipate my future stress about this. My wheels started turning about decisions with Charlotte being in daycare during chemo, my career, balancing protecting Charlotte but not living in a bubble either, etc. As you can imagine, the walls felt like they were starting to close in the more I learned about what was coming.

Chemotherapy- Goals of Treatment

As a parent your gut instinct is to get the tumor out of your daughter’s head ASAP. However, I’m coming to terms that may not be the outcome here. The doctor explained that the first goal is stabalization- meaning no further growth of the tumor. The next goal would be shrinking of the tumor and minimization of tumor activity. The doctor explained it might not shrink and disappear altogether. However, a longer term goal would something called “senescence” which he described as “tumor old age”= meaning the tumor still exists but the cells are no longer multiplying so it’s no longer a threat.

Other Notes:

• The oncologist said he noticed some odd PTT labs from Charlotte’s stay in the hospital (this has do to with blood clotting) and he wanted to run some additional tests to make sure she doesn’t have Von Willebrand Disease (Zach and I referred to it “that one guy’s name disease”)…

  • This would be unrelated to the tumor but could impact things with the port surgery. If something was off, he would then work more closely with hematology moving forward.

  • As of 8/17 a ton of her labs resulted, we are just waiting on the doc to interpret them for us! We are hoping the abnormal results were just from her hospital stay/being on other meds vs some other deep rooted complication. As I ‘joked’ with a few- if I learned that something else was wrong that might be my tipping point!

• Waiting on pathology- The oncologist said he would call us with the rest of the report and finalize details of the next steps (port/chemo as discussed) within the next 1-2 weeks.

• Charlotte’s ophthalmology appointment is coming up next week (August 27th I believe). This team will need to follow-along closely because aside from oncology working to manange this tumor, Charlotte still may need surgery on her eye or glasses in the future…to be determined. We are not sure if there has been any temporary or permanent damage to her left eye. The strabismus (eye jiggle movement) is still visible but ebbs and flows in its frequency. Charlotte is not vocalizing any head or eye pain still- which is positive.

• I asked about safety precautions with a child going through chemo and a newborn under the same roof. The oncologist said unfortunately this scenario is more common than you would think (child going through chemo and baby on the way), and mostly just requires good hand-hygiene (especially wearing gloves during diaper changes) for the 48 hours after chemo treatment since chemo can be excreted through the urine.

  • In my head I made a mental note we would definitely push back the potty training timetable for Charlotte, because introducing that would be tricky with accidents vs just diaper management during the high tide of chemo treatments.

• The Child Life Specialist (super cool guy) came in and showed us an example port and talked to us about port lotions, port shirts and some other ‘hacks’ to port care, etc.

The appointment ended with two nurses taking like 10 vials of Charlotte’s blood which was tough to watch. Charlotte as usual was a trooper and leaped into my arms as soon as it was done. It certainly enforced the need for a port for all of the future testing and just how much Charlotte was going to go through and how much we had to stay strong for her as her parents…because she was looking to us (especially mom) for comfort and strength.

A torn heart

I immediately felt drained after the appointment (I think we all felt that way). I had no energy to give updates to friends and family right away and we all went home and napped.

The best way I can describe it again is the feeling cornered and like the walls were closing in around you… In my head I was doing the ‘math’ of when Charlotte’s port and chemo would begin (early September) and how close that was to my due date (September 23rd). It also dawned on me that my maternity leave is not going to be this magical time of me having uninterrupted time to rest and snuggle my newborn…I was really going to have to balance both attending chemo treatments for Charlotte and newborn time. I already feel my heart tearing a bit knowing that I will want to be there 100% for both kids in a time where I probably can’t… Additionally the prospects of what to do with work, daycare, prepping our home for the baby, oh and actually having the baby (don’t forget about that) all were piling on top of each other. I didn’t know if I was strong enough to actually do it all…but at the end of the day I know I have to give the situation to Jesus and ask for strength from God.

And once again, the Sunday service spoke to my heart as the lesson was on Philippians 4:6-13…which reminds believers that our strength comes from God, that we should surrender anxiety to God, and as a result his ‘peace that surpasses understanding’ will guard our hearts and minds.

The pastor shared an analogy of navigating life with and without your faith is like the difference between a thermometer vs a thermostat. A thermometer simply reflects the temperature of the environment around it. Without Jesus, a person tends to reflect exactly what is going on around you (panic, chaos, stress, anxiety, fear, etc.) especially with circumstances such as ours. However, walking with Jesus is more like a thermostat- where there is regulation and monitoring and though there is some fluctuation, you are still grounded in Jesus. Though I may not feel at complete peace in the situation, I do feel grounded and overall ‘regulated’ by my faith through this journey so far. I have my moments of weakness, but God brings me back to a regulated ‘temperature’ range which keeps me functioning…because at the end of the day, I need to keep showing up for Charlotte.

Song of the week: Everyday Hallelujah

Immediate Prayer Requests:

• Continued prayers that our home renovations. This situation has evolved (I will be purposely vague for now), so pray for God to part the waters for us so we can finally have this work completed and allow us to feel settled and have more practical storage space for our growing family.

• Prayers that the rest of the pathology supports a low grade glioma and doesn’t bring forward any more aggressive traits to worry about

• Prayers that Charlotte’s blood test results ideally do not indicate she has any blood clotting disease/issues

• Prayers for timing…timing of the port, chemo treatments starting and baby’s arrival

• Prayers that Charlotte is not impacted by the negative side effects of chemo and that we will see extremely favorable results from the treatment (quick stabaliztion and shrinking)

• Prayers for the final leg of my pregnancy- I’m definitely slowing down and not feeling quite as good at a time where it’s hard not to be on my “A” Game. Prayers for health, strength, and ideally non-complicated birth.

• Prayers that we are approved for Medicaid secondary insurance to help cover Charlotte’s medical expenses (currently applying)

Thank you for being here For Charlotte.

“Those who wait for the Lord shall renew their strength” (Isaiah 40:31)

It’s been a week since Charlotte had her biopsy procedure that captured tissue from her brain tumor which sits somewhere behind her left eye. As mentioned in my last post, we are currently in a two-week waiting period until the results from the biopsy are processed (targeted August 14 to receive and review results). These results will confirm a lot more about the tumor itself and next steps for treatment. Deep breaths…

Maybe disjointed, but below are various reflections over the past week that I wanted to chronicle.

Exhaustion

“Come to me all you who are weary and burdened, and I will give you rest.” (Matthew 11:28)

I remember saying to Zach, “I am not sure if I’m just pregnancy tired or stressed tired.” We concluded probably both. The days after returning from the hospital consisted of napping and laying low around the house. The emotional and physical toll of the prior week had finally settled in, and as a result, our energy levels were running on empty. Charlotte- who is habitually a 2-hour napper, was taking 3.5 hour naps each day (plus sleeping through each and every night). Even though she was happy to be home and acting ‘normal,’ I knew her little body needed the extra rest from the hospital ordeal. In short- we were all exhausted.

I was also feeling a little sad because my side of the family had a vacation scheduled the week we left the hospital. It’s not frequent that we can all get together given our geographic spread, so we try to get together on a vacation once a year. However, the reality of the timing was not feasible with our return from the hospital; especially for Charlotte, who was recovering from her biopsy and hospital stay in general.

Charlotte had about two days of head-swelling after her biopsy. I remember just staring at her head/face and thinking that something looked off, only to realize Zach had been wondering the same thing. I finally verbalized it and confirmed it was not our imagination but actual swelling. Luckily that did not last long, and we shifted our focus to monitoring her stitch/incision where the needle entered her skull to retrieve the coveted tissue sample.

Despite feeling drained, I do believe that God was/is slowly restoring our minds and bodies during this timeframe. The extra sleep was undeniably needed and spending more time as a family at home felt healing in a way. As much as I didn’t want to wait two weeks for results, I am now, in a way, grateful for the time. These two weeks give us a respite from one stressful period (discovery/diagnosis) to another (biopsy results and treatment plan) and resume a sense of ‘normal’- even if temporary.

“What’s the reason for your appointment?”

The day after we returned home from the hospital I was determined to get all of the necessary appointments scheduled for Charlotte. In particular, I had to make an ophthalmology appointment for her within 30 days (which required getting an OB appointment rescheduled- prayer answered there!). I was making progress and handling the calls well until I was hit with this question from the ophthalmology scheduler: “And what’s the reason for your appointment?” I froze. I instantly felt my throat close and the tears breach the surface of my eyes. All I could muster was an awkward silence and then eventually choke out “sorry” followed by another pause. Thankfully the scheduler had enough emotional intelligence to stay completely quiet until I was ready to talk. I sat there quiet; fighting back emotion, until I could finally get the words out. “My daughter was recently diagnosed with a brain tumor, and it’s impacting her optic nerve so I need to schedule this appointment so that her eyes can be monitored.” The scheduler instantly jumped in with her sympathies and prayers, which I appreciated her couth.

In general, I consider myself a collected individual, especially in front of others. This moment however, caught me off guard, and taught me that there are going to be moments where I am brought from being ‘okay’ to ‘not okay’ in an instant. When I thought about why I got so emotional over this question- I realized that was the first time I had actually verbalized it… “my daughter has a brain tumor.” Writing it in a text was one thing, but saying those words out loud for the first time made me more emotional than I had anticipated.

First Sunday Back

I have to testify about our first Sunday back, because it was really special how God worked through this service. In anticipation for going back to church, I knew the first Sunday back would be emotional. We have a wonderful church family and a ton of prayer warriors which is amazing, but I wasn’t sure how I was going to handle all of the attention from our concerned church family. I think it’s our human nature to hide in the midst of hardship, but again Zach and I agreed it was best to be present at church. Also, it was Charlotte’s first Sunday moving out of the nursery and into the ‘big kid room’ for Sunday school now that she had hit her two-year old birthday. So, as a mom I was naturally nervous for the transition to go smoothly for her, especially given all of the upheaval recently.

Thankfully, her transition to the ‘big kid’ room went flawlessly. It made my heart happy seeing her handle it so well and adjust to the older kids. When we picked her up at the end of service, she was happily playing with the toy doctor kit of all things... She was not afraid or traumatized in the least- doctor Charlotte was confidently checking my heart beat and even gave me a few shots. :)

Rewinding to the adult service (after dropping Charlotte off downstairs), Zach and I got settled in our seats and I was feeling overall ‘in control’ of my emotions. However that only lasted about five minutes, because the very next song that came on - I kid you not- was In Jesus Name (God of Possible)- the very song I had posted a week before and felt a strong connection to regarding Charlotte’s situation. The praise singer prefaced the song with a personal story about how God had miraculously healed her dad after a car accident and how she saw God move through the healing process. The power of the song and the moment (and really the Holy Spirit) just hit me like a brick wall and I covered my face with my hand and the tears came…Zach put his arm around me.

The next song came along with the invitation to go to the alter for prayer. Zach I went up to the alter to pray for Charlotte. We didn’t even need to say a word about what our prayer request was- we were instantly surrounded by people laying hands on us and praying for us and Charlotte. It was a very special moment and we just felt overwhelmed by the support and prayer of those around us.

Additionally, the head pastor lifted up Charlotte in prayer to the congregation and the sermon itself was about healing…

Overall, it was really special how God moved through the music, sermon and people in that church for our first Sunday back. It was confirmation to me that we made the right choice (going to church is typically the right choice!) by being there and just reassurance about the situation.

All I can advise is, if you don’t have one…go find yourself a good church and get plugged in so you can build a church family.

Mercy & Grace

For it is by grace you have been saved, through faith- and this is not from yourselves, it is the gift of God- not by works, so that no one can boast.” (Ephesians 2:8-9)

We have been blessed in many ways by people showing support to our family during this season. There is one in particular I wanted to touch on (though please know, I could write posts every day about all of the generosity, support and kindness from everyone around us!)

Specifically, upon our return from the hospital there were a few financial situations that felt especially impactful (I am going to speak in generalities since we want to keep specifics private). First, we had some unexpected financial support gifted to us and second, we had a financial burden (debt) lifted.

When you are on the receiving end of someone giving you money or eliminating a debt, it is very humbling because it feels so undeserved. It’s not a paycheck you earned or a bill you personally paid off. It is nothing you did or accomplished. It can feel almost uncomfortable at first because you feel ashamed you couldn’t do it all by yourself. It is essentially a gift of mercy and grace- and reminded me of God’s ultimate grace and mercy for us.

Grace is when God gives us what we don’t deserve.

Mercy is when God doesn’t give us what we do deserve.

These demonstrations of grace and mercy towards our family regarding finances helped me refocus on the bigger picture of God’s grace and mercy (His love and forgiveness and promise of salvation) despite not being able to earn it or deserve it. It’s overwhelming in the best way possible.

Anyway…these are just some self-reflections I have had since leaving the hospital.

Now for some precious photos of Charlotte to brighten everyone’s day:

What’s Next

Mainly, we wait.

But, in the waiting we are:

• Feeling our emotions, but not letting them consume us.

• Trying to remain calm and keep fear out as much as possible. (Song of the week- “No Fear”)

• Praying, reading, writing, and reflecting more. We still make time for fun, TV and other things of course; but at least for me- the writing has especially felt cathartic.

• Going back to normal life (working, house chores, etc.)

• Embracing family time.

Our prayer requests remain the same as I posted previously. Thank you prayer warriors/brigade/army!

I’ll be in touch after we receive the results.

Thank you for being here For Charlotte.

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The Why

Thank you for being here. To clarify my intentions for this space, I have no interest in influencer life, so please know that this online journal is first (and selfishly) here to give me a space to process this evolving situation. Secondly, it can be a space to provide updates to those who are following along and praying for Charlotte. Lastly, and most importantly, my conviction is that this journal can serve as a testament to God’s faithfulness and our trust in His plan for our family. I refuse to hide in fear and sadness- because that is exactly what the enemy would want. Instead, I am determined to share not just medical updates, but what God is revealing to us through this journey. “What the enemy meant for evil, God will use for good (Genesis 50:20).” It is not easy writing a story in which I don’t know the ending, but I will do my best.

So in short- this space is for me, for you, for His Kingdom.

But at the core, it is For Charlotte.

The Backstory

I will spare you our whole life story, but felt there were some key details that were helpful in leading up to the diagnosis that changed our lives.

May 2026- Charlotte’s left eye started to drift outwards (lazy eye), so we quickly got into the pediatric eye doctor and started patching her eye for 1-hour per day as instructed and would report back for a follow-up in November 2026. This is fairly common in kids, so we were not overly stressed, but were diligent in following the treatment plan in hopes we would see some improvement or at least keep it at bay.

Mid-July 2026- We noticed that Charlotte’s left eye (same one that was drifting) started to do some up and down movements (almost a jiggle). I called the pediatric eye doctor and requested an earlier appointment given the change in her eye movement, and they moved my appointment to early August. That felt better but in the back of my mind I felt an uneasiness about this new development.

Around this time, Charlotte ended up with a small case of pink eye and a weird GI Bug that spanned two weeks, so our focus shifted to managing those symptoms for a bit. Her odd eye movements grew steadily more noticeable.

July 17th- Charlotte turned two! I add this detail here because it was such a joyful day/weekend celebrating this vibrant girl…it was truly the antithesis of what would come exactly one week later.

July 23rd (Morning)- Charlotte had her 2-year check-up. I showed the pediatrician her eye movements and explained this had been going on for two weeks and asked her if this was something I should be more worried about and if I should try to get her seen quicker than the August appointment. The pediatrician said she would call the office on my behalf and get Charlotte seen sooner. She got us an appointment the very next day (I’ll be forever grateful for this), on July 24th. The “threat level” at this point was more of “this could be something that requires surgery or glasses, so the sooner she can be seen the better.”

July 23rd (Evening)- Our Bible Study started a new study on the book of James, and in particular we studied verses 1-4: “Consider it pure joy, my brothers and sisters, whenever you face trails of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”

Little did we know that we were on the doorstep of the biggest trial we had yet to face…

July 24th

My 34th birthday.

The plan was for Zach (my husband) and I to drive separately but both attend the eye appointment and then he would take Charlotte back home and I would go into the office (home and work were opposite directions) and then we would go out to dinner for my birthday later that evening. Looking back, God’s hand was in this from the beginnings, because Zach and I rarely went to doctor appointments together but Zach and I were truly in this together from the beginning…

The eye exam resulted in some uneasiness- the doctor was concerned that her eye movements (strabismus) warranted more testing and described the up and down movement as irregular (side to side might be more expected while patching but the fact that it was up and down and happening without the patch was not normal). She explained that Charlotte would likely need an MRI, but since those require full sedation for little kids they take roughly 6-weeks to get scheduled. None of us were comfortable waiting that long, so she advised we head to Children’s hospital ER and see if they could do some testing (CT or “quick” MRI) to get some answers sooner. We agreed, drove back to the house to grab a few things (knowing it might be a long day), consolidated into one car, and headed down to Children’s hospital. I remember on my drive to the house I called my mom to give her an update and had verbalized “I really hope it’s not cancer.” As any mom would, she reassured me that was unlikely. Something as scary as cancer felt like such a long-off possibility at this point, especially considering Charlotte’s behavior and health was otherwise perfectly normal.

The Hospital Stay (July 24th through July 29th)

Emergency Department

We entered through the Emergency Department and answered all of the background questions about our family history and Charlotte’s health history- “No she does not have developmental delays (in fact, quite the opposite!). No, she has not complained of head or eye pain. No, she does not have any balance issues.” All we had to offer was her irregular left eye movement over the last two weeks, which they could all easily observe. We moved to a CT head exam fairly quickly into the visit.

The crazy part was I actually got the CT results through the MyUPMC app before the docs returned to the room. I’ll never forget opening that test result and reading “Large suprasellar/hypothalamic mass measuring up to 4.8 cm…” I didn’t cry or scream or fall down; I looked up seriously at Zach and said “something came up on her CT.” Charlotte was in the bed playing beside us. We read the description and looked at each other, knowing that this was not good. It felt almost out of body. The team soon returned and delivered the news we had just read; they described it as a “lesion” and that a CT couldn't give details about what it was specifically or what it consisted of, etc. They determined that we should be admitted and that a detailed MRI of the brain and spine (the one that required full sedation) would be conducted. We were then transported to the PICU. I remember feeling emotional as we moved to the PICU; the severity of the news and Charlotte being wheeled into an ICU setting was starting to sink in and feel scary.

PICU

The rest of the day was honestly just awful. Charlotte had to fast the remainder of the day to prep for going under (it was heartbreaking when she kept asking for snacks and we had to say no). She was intubated around 9pm (only then did I eat a small turkey sandwich, because we didn’t want to eat in front of her all day when she wasn’t allowed). After intubation the nurses and respiratory therapy and physicians worked on her for several hours to ensure she was “comfy” before allowing her to go to the MRI (which finally happened around 2am). It was very stressful. We slept maybe an hour while she was getting her MRI and then she was wheeled back in around 4:30am where she remained intubated for a bit while they all confirmed they had the images they needed. She was finally extubated groggily asked for “mama” and “corn” (her unicorn pacifier).

The neurosurgeon/doc arrived with an empathetic but serious tone of voice and pulled up the MRI images for us to see. He cut to the chase pretty quickly and shared this was a brain tumor. I remember at one point asking “does that mean cancer” and he paused and said “yes- a tumor in the brain would be considered cancer.” Zach put his arm around me and we choked back tears. The doctor did explain that he believed based upon the location and images that this was a slow growing grade-one tumor and reinforced that the hospital had an amazing specialist in child brain tumors who would be back Monday (it was Saturday) to help us through next steps.

The next few hours were a blur. We really didn’t allow ourselves to break down fully because Charlotte was awake and we were trying to comfort her and keep things light for her. Eventually I sent the dreaded text to our close friends and family updating them of the situation. I personally could not make any phone calls because verbalizing it felt impossible. We decided to have Zach go home to grab more clothes and items for us since we knew we would be staying until at least Monday. I remember sitting alone in the PICU, holding sleeping Charlotte for those few hours trying to hold back tears, feeling the tightness in my chest and heart, with all of the terrible thoughts, fears, and guilt rushing through my mind. As a mom, I had felt like I failed. I should have brought her in sooner. Should have paid more attention. I also could not fathom losing her…life without Charlotte felt impossible.

And then my whirling mind eventually settled to one verse in Psalm 23, “Though I walk through the valley of the shadow of death, I will fear no evil.” And I just prayed and repeated that Psalm over and over again and I slowly felt strength flooding to me and my state of mind shifted from the darkest fear of losing Charlotte to how to stand beside her and help her beat this...

We were next moved out of the PICU and onto 6A Neuro. Before we were transferred, the PICU nurse, Emily, laid hands on me and Charlotte and prayed for us. It was a beautiful gift and one I’ll cherish.

6A

Sunday came and sudo peace settled over us- no medical procedures were happening and very few specialists were onsite, so we took the opportunity to get Charlotte out and about to cheer her up (took her on a wagon ride to the garden and ‘toy room’ as she affectionally called it, gave her a bath, etc.) and we also had some family visitors which lightened the mood for her. Though I initially felt impatient- like this was a wasted day- again God was working in the timing. It gave us time together-in an odd way- as a family, and provided time for Charlotte to recover from the MRI before heading into another procedure (biopsy)

Monday arrived and we finally met the esteemed pediatric brain tumor specialist and he reinforced what the neurosurgeon had told us previously, but added that he believed this was an “optic nerve glioma” which is a slow growing, grade-one tumor (I used a lot of chatgpt to breakdown terminology we were hearing so I could understand!). However, he emphasized that a biopsy would confirm what exactly the tumor was (some tumors can mimic others). He shared that though all tumors in children are rare, this particular type (if it was truly an optic nerve glioma) is one he sees monthly at the hospital (how crazy is that!?) and thus there is better known treatment for it. He made it clear that surgically removing the tumor was not an option for this type of tumor; it would do way more harm than good and specifically could cause permanent damage to vision and potentially other brain structures if surgery was attempted. He explained that a needle biopsy would be the recommended next step and could happen tomorrow (Tuesday). We were grateful this could occur so quickly for Charlotte and felt some peace about what he had shared with us and felt it was a prayer answered that we could get Charlotte a biopsy the next day.

A doctor from oncology also stopped by to discuss that after the biopsy we would be scheduling the follow-up with his team to review the results in two weeks. He assured us that this tumor was not a result of anything we did and also that the treatment plan would have been the same whether we brought Charlotte in 6th months ago or now. He explained this type of tumor forms at random- like if someone is copying a book by hand and misses writing one word, then that one small error could lead to a compounding effect (I.e. mass of cells, I.e. tumor). That gave me some peace hearing his explanation. However it was surreal even talking to oncology and processing that chemo was likely in Charlotte’s future. I remember being awake for an hour that night just feeling sad at the thought of her losing her hair and being sick and just visualizing all of the things you think of with kids that have cancer.

However I found peace after flipping to a song that I have always loved, In Jesus Name, and played it on repeat through these new lens of directing the powerful message to Charlotte (please listen to it if you haven’t!). I also felt compelled to share this lyric video to Facebook. I wasn’t quite ready to share Charlotte’s whole situation yet on social media, but I shared the lyric video link with the single comment “For Charlotte.” God placed this all in my heart; perhaps the early stirrings of what this journal would become.

OR

Tuesday was biopsy day. Even though Charlotte was the second case of the day (another prayer answered), it was still a super long day. Zach and I spent hours in the OR waiting room praying over Charlotte and killing time trying to lighten the mood. The interesting part was the procedure itself was only about 20 minutes but due to the fact that it was performed by a robot, there was a ton of preparation and calibration required. Eventually, we were alerted that everything had gone well and she was ready to see us. It was rough for her coming out of the general anesthesia. She was crying for ‘mommy’ and all I could do was hold her little sweaty body and try to comfort her as she cried. She screamed when Zach and the nurses took her to the post biopsy CT scan ( I wasn’t allowed in there because I am pregnant). Once she was back in my arms, I just transported her myself by carrying her back to 6A where she finally settled. Zach and then I sat on the playmate with her and fed her the biggest meal of her life while she happily watched Ms. Rachel (this was her comfort show during the hospital stay). As much as we were itching to go home, we agreed with the decision to keep us one last night to ensure Charlotte was stable and had good pain management post-procedure. We spent the last night on 6A and were as promised, discharged in the morning to go home.

Home

We were so relieved to come home, but even after coming home the totality of what we had just experienced definitely hit us. We were beyond exhausted and emotionally drained. The strength and steadiness we felt at the hospital melted a bit the first night home. After Charlotte had gone to bed, Zach and I just held each other and let ourselves feel sad about the situation. We agreed that Charlotte didn’t deserve any of this but that we trusted God’s plan for her life and testimony. We reflected on how she was already changing our hearts and priorities as her parents and were in awe of how many people were praying for her and impacted by her situation.

A Collective Thank You

During all of this- Zach and I felt overwhelmed by the amount of people from all walks of our lives who reached out to offer their love and support. Above all, we felt covered by prayer and sensed Charlotte’s prayer army growing daily (As my sister put it, “there are people in 10 states praying for Charlotte!). This helped us remain calm and feel a sense of peace despite the circumstance.

For those who messaged/texted, brought food, sent gift cards, purchased gifts for Charlotte, mowed our grass, ran errands, checked on the house, cared for Louie (our dog), covered work in our absence…thank you. In case I missed individually acknowledging you, please know Zach and I are so grateful.

What’s Next

In regards to this journal space: I can’t promise what cadence or depth future posts will be; but I will share when I can and feel convicted to do so. Until next time, here are some specific prayer requests we would ask of Charlotte’s prayer army:

Immediate Prayer Requests:

• God’s miraculous healing of the brain tumor above all

• Charlotte’s healing and rest after her hospital stay and biopsy

• Biopsy results will be aligned with what doctors are predicting and that there is a known and optimistic treatment plan

• The swift removal of a separate burden in our lives- house/garage renovations. We do not want this stressor to take focus away from Charlotte.

• Strength and wisdom for Zach and I through these next two weeks waiting for the results and resuming ‘normal’ life until then.

• Hedge of protection over my pregnancy and strength for me managing Charlotte’s medical needs and my own.

Thank you for being here For Charlotte.

Thanks for reading For Charlotte! Subscribe for free to receive new posts and support my work.