Jireh's Journey

12/01/2025

If you have a chance please take a moment to click the link and ask our representatives to support this legislation. I did it last night, it automatically sends notification to your district based on your address.

Time Sensitive! Tonight and tomorrow, we have a critical opportunity to help save the lives of children with cancer.

On Monday, Dec. 1, the House of Representatives is scheduled to vote on the Mikaela Naylon Give Kids a Chance Act. Your voice can make all the difference.
This legislation is named in honor of Mikaela Naylon, a brave osteosarcoma warrior who traveled to Washington D.C. to advocate for this very bill just months before she passed away. Mikaela wanted to make a difference for other children fighting cancer, and now we have the chance to help fulfill her wish.

Here's how you can help:

Please take a moment to contact your House Representative and urge them to vote YES on the Mikaela Naylon Give Kids a Chance Act. It only takes a few seconds, and your message will show Congress that we stand with children with cancer.

Click here to write to your Representative now:

https://www.congressweb.com/KVC/14/

Let's honor Mikaela's legacy and give every child a fighting chance. Let's get this bill passed!

11/25/2025

Looking up to big bubs. 🫶

11/25/2025

11/25/2025

Jireh is doing amazing. At our last visit if you recall we decided to march forward with our same dosage escalations despite our drop that landed us back in the hospital. After that visit our labs continued to be out of range and we increased chemo again. Our primary treating ONC at that visit explained to us that we had been dosing Jireh with the wrong chemo dosages the entire time. I of course went into a tail spin given how many dosing issues and miscalculations we had in the past I took the "news" pretty hard as since then I've scrutinized every dose of chemo we are giving the little man to make sure " there are no more errors", how could I have possibly "missed this"? After getting home and decompressing from the news and increasing chemo by over 70% effective immediately I started my deep dive, looking into the protocol, asking other families for dosing they were receiving across the world and come to find out that was simply not the case. We had in fact been dosing correctly the entire time so I frantically created graph charts and statistics and messaged the team that night. The next day our primary called us and jovially said I knew you were too quiet when I broke the news and you'd be circling back with additional questions so I already carved that time into my schedule today to speak with you about it. We decided to decrease the dose slightly to roughly 50% increase as my primary concern was increasing meds so quickly and how that could impact him from an immunocompromised state. We left it in his hands as that's why we elected to move forward with him as our primary and I wanted to make sure that he knew he hadn't made a mistake, he had done everything right as when he "broke" the news to us the body language spoke for itself he was also distraught. After reading over the messages I sent and data presented he agreed. He likely looked at childhood dosing charts instead of infant protocol in which you get 75m2 not 50m2 and the chemo increase proposed might land us in a more of a shock to the immune system which we wanted to avoid as doing so would also land us in a hold pattern for chemo and likely back inpatient. We went back three weeks later to test and counts were still out of range but more declined at about 50%. We increased again slightly with the knowledge we had gained and are now at the same levels he initially proposed which I'm still now somewhat kicking myself in the butt for but he reassured us that the path we took worked and was of a sound mind, we hadn't gotten dangerously low and now we know for a fact we just need to be a little bit higher. We also learned at this last lab visit we didn't need an IVIG infusion like we all suspected we would. Our primary said this is a very good sign, this is telling us that his body is starting to slowly recover and although we might need it next visit it's spacing out so instead of getting an IV placed at our January visit we can just plan to do a simple finger poke which is way less traumatic. This whole journey just feels like a scientific hypothesis rather than a clear cut path which can feel a little daunting to me who lives in an analytical world. On another note I was elected to sit on a parental advisory board for the next five years. The goal of the board is to help teach other families to advocate for care for their littles walking through it and is funded by a grant from the NIH. During this journey they will also create videos to share with families recently diagnosed and given my extensive involvement in childhood cancer forums I feel there are so many other people who would be much more versed and educated to provide feedback. I feel underqualified but also excited they are even thinking about other ways to help families and I can be a voice for "what's missing" in the US healthcare system. Funnily enough they are after two years moving to conduct focus groups and that's what I do for a living. It almost is a small sliver of giving purpose to pain for me so I'm excited and honored to have been nominated for the position. Here's to our normal guy for now. Our counts being out of therapeutic range have been hard to walk through as from a scholarly standpoint that points to a higher risk for relapse but for now we have a son whose been battling since 10 months and is now 2.5 years old and not where is supposed to be in "milestones" right now but a boy whose really "living" and soaking up the sun and those moments are ones that are NEVER taken for granted. Continued support and prayers would be that our journey continues to be "successful" and Jireh's chemo kills all the cancer cells in his body and our chapter will come to a close. Please continue holding those families we know walking alongside us who have relapsed, those who have lost their angel with wings and others who continue to fight this wretched demon for years to come.

10/19/2025

Childhood cancer awareness month - we missed posting an update about it. If you want to know how to get involved here are some things because it should never be "over".

Give blood or plasma when you can - these can be life saving transfusions for our littles. IViG is one of the only infusions we continue to receive as the breakthrough treatment drug we took depletes them and our body is having a hard time making them back. IViG is harvested from plasma and now that this drug we took is the newest, hottest on the market I am sure more donors will be needed. You also can get paid to donate plasma. https://www.redcrossblood.org/

Support a local cancer organization. That does not mean give money - that means what about packing fun bags for kids in the hospital? You can gather a group of friends and have everyone pitch in and drop them off most likely with the group at the hospital. What an impactful way to teach children to give back. Here is an example of what Cure has in their pantry for families inpatient. https://www.amazon.com/hz/wishlist/ls/2YUYL3XILBP6P?ref_=wl_share&fbclid=IwY2xjawNhxN5leHRuA2FlbQIxMABicmlkETFYU1lEUEtNQXVjc2kxdjBrAR5CaKoei0IRBf4jlpkD6rk9reB3Pk9g4N4YvxTlWLzzTuw70ch9sLBYjY8M_A_aem_t4cHr8uC9gVVUSDJRySJqQ

Here is what we have been up to:

- Cure Childhood cancer has continued to be in our corner. In the month of September they hosted an event at the Atlanta Braves that honored those families impacted by Childhood cancer. Not only did we receive free tickets to the game but we also had a jersey and little man was able to walk the field. They continue to bless us as we walk through this journey which includes donating Christmas gifts to us last year, giving us meals three times a week while inpatient, paying for counseling services during this. I could really ramble on about this organization as not only are they focused on donating millions of dollars a year on research but they are also making sure families walking through this journey are supported financially, mentally and emotionally. Take a look at our little hero's wall on their page: https://curechildhoodcancer.org/heroes/jireh/

- CureFest 2025 - Washington, DC. We were unable to attend in person but this is a huge gathering to support Childhood cancer. Our little man attended virtually on their wall pictured below. It is heartbreaking to see how many children are really impacted by cancer. We are just one out countless families. https://www.facebook.com/CureFestUSA

- Jireh has had some complications lately which landed us inpatient again. After his last dose escalation to get counts into therapeutic range his health noticeably took a tail dive. When admitted we found out we were febrile neutropenic, IGG was shockingly low and he also had Rhino virus. We were put on a chemo hold for almost two weeks to allow his body to recover and started again at the same dosages we halted at as our treating physician feels we were seeing chemo and viral suppression and likely viral suppression being the most impactful. We are back on full oral doses from home and although he has improved we are monitoring him closer than normal. Prayers would be continued suppression of his marrow to ensure we are in therapeutic range but also finding that balance that does not push his body too hard.

As always keep the others we know who have lost their battle, those continuing to fight and those families who are in the clear but really never "done" in your thoughts.

07/22/2025

Jireh lab update! We just got all the testing back today. 🫂

Normal blood panel (CBC): this looks at the basic labs I was rambling on about in the last post with white blood cells and neutrophils. After the 7ish day mark counts came back decreased! White blood cells were decreased from 6 ish to 5 ish (need to technically be less than 3) and neutrophils were down from 4kish to 3kish ( need to technically be less than 1.5k). What this means is we are TRENDING down. Which is what we WANT, normal chemo takes effect 7-10 days out in labs so this news is very promising. We might need to tinker with doses more but we need time to tell that.

LDH testing: looks at cell turnover, high levels can point to leukemic activity. Numbers were WAY high. The last time this test was run was at diagnosis and was 700ish this time over 1,100 ish. Definitely shot up red flags but the sample was what's called hemolyzed which means red cells were erupting contaminating the sample before the lab got it which is a false test result. We will ask for this test again just to make sure but ask our doctors thoughts before doing so because based on other results listed below it's likely not needed. This is also a marker that's used to detect possible leukemic activity before it really shows its "true form".

PCR testing: this looks at cancer on the molecular level and in simplistic terms basically says hey even though we don't see cancer the cancer DNA is there so we know it's just a matter of time before we start actually seeing it again. This test is frequently used outside of the states for monitoring but not SOC in the states. Its come back NEGATIVE. This was the most crucial test given our wonky lab work. There's some nuances in this testing listed as disclaimers which we need to ask further questions on but not questions for pressing concern at this time.

6MP testing: which looks at how his liver is processing things. We give him this chemo everyday roughly 24 hours apart each dose. What this test told us is his body is NOT processing chemo too fast which causes counts to be wonky. To put it in simplistic terms perhaps his body is excreting it in 12 hours instead of 24, that means adding more chemo to the mix isn't going to help it's just going to make his liver work harder and perhaps we end up with liver complications because of it. This is AWESOME, counts were a little outside of range but NOT concerning enough to do anything about.

All in all the long story short from all the testing we did is that Jireh just needed more chemo to keep his counts suppressed. It was a hypothesis but as a mama I wanted to be sure that's in fact clinically what we were actually dealing with. So our action to increase chemo from the jump in the last report was the right call from what we are seeing. I still need to confirm what I'm interpreting from the PCR and the 6mp results that just came through today but I'm almost 99.999999999% positive I'm understanding it clearly. I'm so grateful for our physician who called immediately after our first set of labs resulted at 6:30pm last week knowing I was going to go haywire when I saw the LDH levels to explain it and put my mind at ease as we waited for the extra labs to result today. He's been amazing and such a needed shift of comfort from our original primary.💓 Continued prayers would be that Jireh would tolerate lab draws without them being so traumatic and for me to advocate for them to be taken the right way the first time. When we went in for these additional labs it took four pokes, after the third back up help was called and it was immediately drawn correctly from a different phlebotomist tech who according to her badge specialized in oncology. It honestly was just wretched for him and for me.

I also want to shout out to this organization who sent shoes for us. Project Outrun sends shoes once a year to families battling. Since Ji is too young to like any type of shoes outside of Cocomelon we let my oldest son Trevon customize his own shoes as although the chemo has taken a huge toll on Jireh he doesn't really "understand" it and the really big toll has been taken on his siblings that have had to really swing with all the punches and lack of care focused on them through this entire process and the missed everyday life routines that took a back burner. We are so grateful for all the organizations that take a stand by our side to continually offer little glimmers of hope despite any anxieties that remain. If you get a chance check out their story, it's one that's so inspiring. Ji ended up with his Cocomelon shoes purchased by us and Trev ended up with some super nice Nikes he only wears to his internship for physical therapy as he pursues his career interests entering his senior year in high school. 💓

And of course as I end this update please continue with your thoughts and prayers to all the families we know still fighting, those recently diagnosed and those who have lost their battle and how their parents are coping with their loss. United we stand in all journeys, it's so tough that words aren't enough to describe it and our hearts are forever intertwined. 🫶🎗️🫂✊

07/16/2025

We go in tomorrow for extra labs and as I write this my nerves are on overdrive. Our monthly labs have been outside of therapeutic range shortly after our undiagnosed seizure in April. What this means is our white blood cell count is above 6 (when it should be suppressed and under 3) and our absolute neutrophil count has been greater than 6,000 ( when it should be between 500-1,500). If you know me then you know I'm not the one to sit back and wait. Our protocol calls for chemo dose increases, to get back to the levels we should be within, after two wonky labs like we have under our belt at this point. The goal of our current treatment regime is to keep these levels that are high suppressed so having high labs for over two months is a big question mark ❓. This can be for a variety of different reasons, it could be that his body is acting "normal now" and over producing to get to normal levels, it could be the chemo is not getting absorbed properly, it could be he's fighting some unknown infection and it could be that we are experiencing relapse. It's all a guessing game at this point but what we do know for a fact is what we are seeing is not OK and something has to be done to suppress his counts which is what the chemo is supposed to be doing but it's not. In full mama gear I declined the Oncologists proposed plan which was waiting another month to increase dosages until August which would put us at over 3 months of wonky labs if they didn't correct, we increased dosages immediately on one of our chemo drugs last Wednesday after getting the results. After pushing we are going for labs tomorrow to see how that has impacted his counts and if we are back in a therapeutic range like we should be. Normal incubation time for our chemo dose to go into effect is 7-10 days. I've also tacked on several additional tests at my request to find out "what is happening". The additional tests advocated for should be able to determine if we are dealing with his body processing too fast the chemo now or if we are dealing with relapse on a molecular level. The molecular level testing looks at how the cancer is formed and when we were diagnosed there was what was called blasts in his labs. That basically just means cancer cells. We aren't seeing blasts in his labs which is a positive sign but that doesn't mean cancer couldn't still be at play. By the time you see blasts in the blood from the labs it's basically "full blown cancer again" which is why the additional testing we are requesting is actually looking on a molecular level outside of the "blasts" more like trying to play hide and seek with the actual DNA of his cancer before it actually becomes blasts AKA cancer. This is significant in treatment because if you "catch it early" then getting back to no cancer again is much "easier" opposed to waiting for it to show "blasts" in a basic blood draw is a more reactive than a proactive approach as then you are dealing with a serious "infestation". The downside to increasing chemo is it can cause us to become neutropenic. What that means is we can't fight the normal viruses and colds, we have to get admitted to the hospital in a controlled environment. We are at a crossroads right now to get to the bottom of it and I would ask for your support and strength to the medical degree possible to guide not only us as we push for additional testing and labs to get answers but also our primary oncologist to guide us back down to the levels we need to be seeing and find a healthy balance of it. We are supposed to be travelling for some time in the next coming weeks so adding this additional layer of medical complexity at this time is less than ideal as that might mean plans get interrupted but more importantly having to seek care at a hospital out of state. Keep little man in your thoughts as we play the waiting game and advocacy for additional labs and testing and for all the other families walking this fine line as well as our families who are continuing to cope during their lost battle. 🎗️🫶🫂💓

06/27/2025

Yesterday we lost a young warrior. Her name is Nina and her mom has been pivotal in keeping me sane during this journey. She started a group chat on social media that connected people from Australia, Canada, Europe, the islands to the States so we could all compare notes on our kids care and to support us walking through it. She's a connector, she's an influencer, she marched on with her daughter's diagnosis unafraid just to connect for a meaning and a purpose. That purpose was to give Nina the best care she possibly could muster. They relocated from Florida to St. Jude to give Nina the best possible outcome and have gone through hurricanes that decimated their prior home. Gave up their jobs for Nina for a cure. I know I have written before about keeping others in your thoughts and prayers and it's always been without a face, without a name just blanket families but she's always been one. She's always been one that silently went nameless. But she's not nameless she's Nina. She's a beautiful soul that has lost her battle. We are grieving right along side her with every tear, questioning why and holding her family so tight and we hope you all will do the same.

05/07/2025

Well it seems we are at monthly check-ins with our loved ones now which is a good place to be in. 🫂 Our journey continues marching on and as fate would have it, as I did not knock on wood the day after our last post, we rushed to the ER for complications. It's just a subtle reminder we are still walking through daily chemo treatment and things can change at the drop of a dime despite the great strides. Little man woke up more groggy than normal and as I proceeded to pull him out of bed he was completely limp. His eyes were starring off in a daze, his head covered in sweat and I couldn't "snap him out of it". I took his temperature which was two degrees below baseline. After frantic calls to our emergency on call line at our treating hospital unanswered I called 911 who seemed to advise we go straight down to our treating hospital despite the 45 minute drive as they might not be able to support him at our local hospital and we would have to be medically transported there after triage at our local hospital anyways. They felt his condition was stable based on my reporting and it was the quickest path to care. Unfortunately we have no clinical diagnosis of the freak incident but what seems to be the general consensus after looking at his blood panels that had more than doubled from the day prior and went back to baseline the next day, my description of his state and his slow recovery back to baseline that day, his EEG and MRI was that he had what's called a stress induced seizure. The MRI and EEG did not indicate a seizure and nothing came back from the EEG to suspect he's at risk for a future one which is why we left with no actual answers. In our overnight stint I talked to someone I hadn't met before which was our on call physician AKA medical angel for the night and he was quite transparent he was not an ONC. His job was solely to make sure patients were stable overnight. His words of wisdom were "tomorrow you'll have these tests done to get to the root of what happened and I want to be transparent you might not get any answers. For a parent I can understand how scary that might be but what you need to walk away focusing on is everything that has been answered and eliminated." His chemo dose that night was also overlooked and not double signed as needed for it to be administered so I brought it down to the hospital and forgot our at home syringes so when I spoke to him I was at a breakdown point. This is something that's happened before and for a family walking through it, it's so frustrating the red tape that exists of "hospital politics". The concern was his white blood cell count. In the hospital the day prior he was a low 2 and when we went to the ER that day it was a 6 which is beyond alarming and one of Jireh's signs upon leukemia diagnosis was a high white blood cell count so my mind was racing. The symptoms he was experiencing could have been indicative of what's called a central nervous system relapse which basically means the leukemia has spread to the brain and that's why we were seeing white blood cells almost triple from the day prior and neurologic issues that he was facing that morning. After talking with our on call physician that night he reassured me not only to not focus on what's not found the next day but also fully heartedly related to me as a mom and my fear of "missing a chemo dose" with what was going on given hospital red tape and just needing the syringes to take care of our boy as that chemo suppresses his white blood cell counts. Our treatment regimen is VERY strict and he must receive the same dose within an hour each day so five hours out on top of what we were already facing and knowing families who have relapsed this way before my mental state was needless to say beyond unsettled. We ended up finding syringes to dose in our room within 15 minutes and the amount of peace such a small thing gave me as a mom was God sent. We have moved back his dosage of chemo slowly each day by an hour and are now giving it with a snack when he gets home from daycare and then he has dinner after that. The chemo he takes daily it is common to have two side effects one being nausea and the other being low blood sugars. We were given the freedom of choice to choose dosing times when entering this stage and chose to dose at night in hopes he wouldn't feel sick and not eat during the day. They suspect his blood sugars got too low overnight which in turn caused the stress related seizure that next morning. I didn't even realize you could have a seizure without mouth foaming and involuntary body jerking but apparently that's a thing. 🤷The neurologist did say they saw "spots in the back of his brain" during the MRI but said that was "normal" for kids who have undergone so many chemo injections to treat the brain from leukemia. When we spoke to the rounding oncologist that day he said it was very abnormal to have spots but then also very normal in our treatment path. When we followed up with our primary in clinic for our last chemo injection into the spine that goes to the brain he said that he'd have to look into these lesions found more and talk to us about those in greater length at our next visit at the end of the month. Unfortunately after that injection we hadn't even made it out of the hospital cafeteria before Jireh started vomiting from his mouth and his nose. Luckily we were in a place surrounded by medical professionals and had a respiratory therapist eating lunch that saw the distress. They advised us to go back to clinic to tell them what happened. Clinic turned us away as we had been "discharged" and told us to call the on call number or take him to the emergency room wing. As a parent this goes back to the hospital beurocracy that can just be suffocating as a parent just trying to care for their little. 😔We spoke to the oncall clinic in the hospital lobby who confirmed since he had not been premedicated with the anti nausea med and based on the respiratory therapist who "evaluated" him during her lunch that he was stable enough to go home and administer the nausea meds there and to come back should the condition worsen to the emergency room. One day all of these hospital bureaucracy systems I hope to make an impact with based on how many of these we have faced in our journey and how stress inducing these are to the mental state of parents walking through this just trying to care for their littles walking through it. One day, when we are done with our journey I hope to be able to spend time giving back in these ways. 🫶For now Jireh is stable again, no freak seizures since then. He's still loving daycare and we are currently trying to find a new provider as our current one is retiring at the end of May. We hope to NEVER have an EEG again, it was so traumatic with a 45 minute placement of probes that pulled off as easily as they were put on. Prayers would be welcomed as our fight is not over just different. We need a fantastic in home provider who hits all the "boxes" to keep little man safe and our household running as we continue treatment, for seizures to be the one and only in hopes that just changing our dosing time does the trick, the lesions found on his brain to not be significant in long term complications which are unfortunately common and for Mr. Jireh to continue to be in remission as the first two years are the most crucial in treatment for us. Thanks for your continued support and continue to uplift the other families we know walking through this challenging battle and all that it entails. 💓

04/10/2025

Jireh update. 🫶We ended up with the flu and little man got pretty sick but we stayed out of the hospital and continued to treat like a normal boy. We went to the hospital today to undergo our normal lab visits and everything continues to be *picture perfect* with our blood labs. We are so blessed. Our oncologist is AMAZING and reassured me that even though we are not "out of the woods" and will never really be (I'm adding that) that my research was right that most infants relapse within a year of diagnosis and passing that mark is a great milestone. He encouraged us to continue the transition to "real boy status" and even referred to taking off his oncologist hat and using a pediatrician one instead several times during our appointment. Tears of joy only those walking through it could really understand the weight of this sentiment. 😭 I so appreciate the candidness of our oncologist, his bedside manner and in looking back it's really what I needed mentally as we march on with our journey. We are cleared to take normal vitamins, which were frowned upon until now as supplements aren't regulated. We were tickled pink that one of our favorite nurses was working inpatient today during our visit. She came and spread her light and love and hugs as well as kisses for little Jireh through her mask. We have been waiting to see her ever since our last release and she was finally working today! It was such a refresher to the soul, we love her so much and have sincerely missed her. 💓 We have attempted to give Jireh a luxurious bath since he no longer has his line with Cocomelon shampoo, Bluey bath wash, all the sq**rt toys and bath tub colors and he'll have none of that nonsense. 😂We celebrated our big two year old birthday, with FRIENDS! Yes Jireh has friends now, not just adults who love him with masks and it was a glorious day watching him engage and interact with the connections he's made at his in-home daycare. Last year I was so scared we wouldn't even make that. 🫶 We have finally stopped nursing. It's been two long years and nursing is one of the only things I felt like I could "control" in this journey giving him antibodies through it. He's a toddler now and we have officially transitioned out of it although he still does his Chewbacca nursing call from time to time. We also went on a respite weekend retreat with the whole family. This was a big milestone for us as it's our first vacation since diagnosis on 2/5/24. I am still scared to shell out money for a vacation booking with the unknowns that linger on but this was our first step into learning how to live again. It was an all inclusive trip up to Jasper, GA all expenses paid with other cancer families that Lighthouse Family Retreat sponsors. They also have week long get aways we were encouraged to attend and I look forward to that next year perhaps. Young Life hosted the retreat and my goals were to connect and relax and I'm pleased to say mission accomplished! CURE Childhood Cancer also had their yearly Quiet Heroes Event. This is a day that is put on just to love on Mama's walking through this storm. It was a glorious day. I went last year, drug from the hospital, and this year it was so much more impactful because I could really soak in the amount of energy, time and love that was put into this event just to make me feel not alone, pampered and connected albeit from TOTAL strangers. Cure continues to be such an integral part of our journey and I can't wait to be in the space to truly give back in the ways that they have done for me. Thanks for continuing to support us and please continue to pray for those still in treatment battling for their happy ending, those angels whose families will never be whole here on earth as well as the others who are learning to live life finally. Now time for the photo dump for catch up!