On December 27, 2023 Jadier was diagnosed with Acute Lymphoblastic Leukemia and he has been receiving treatment at USA CW since his diagnosis.

Jadier finished his second phase of treatment on March 31st, he had a bone marrow aspiration on April first, which showed that he still had 0.004% cancer cells present in his bone marrow. We were devastated to say the least. At this point our medical team informed us that Jadier’s cancer seems to be resistant to traditional chemotherapy treatment. So we were presented with a few options. One would be start a medication called Blina, that would put his disease into remission, but would only be a bridge therapy for a bone marrow transplant. Or to enter Jadier into a clinical trial for Car-T cell therapy at the children’s hospital of Philadelphia (CHOP). We got all this information at once and our brains were fried! Our team recommended to apply for the clinical trial because we had nothing to lose, and everything to gain. While that process began he was on a chemo hold because his counts were low. We took the opportunity and put our thinking caps on and we started to research!!

What is Car-T cell therapy?

Car- T cell therapy is a cancer treatment in which they remove T-cells from Jadier’s blood, take them to lab, and in this lab they teach the T cells how to recognize the B-cell cancer and attacks them. Once the T-cells are ready they are given back to Jadier (like a blood transfusion). Once they are in the bone marrow the new T-Cells will begin to reprove and they kill the cancerous B-cells, and essentially curing him and he will no longer need chemotherapy. Does this mean his cancer won’t come back? We are praying hard that this is the cure for JD but his disease has proven to be quite stubborn Car-T cell therapy has been very successful for many kids that are high risk like JD. We will take it one step at a time. There’s always a possibility that his disease could come back but in Jesus name this will cure him!

He was admitted into the hospital on April 15th to receive high dose methotrexate, which he tolerated well and was able to get it out of his system quickly and was able to be discharged today.

I say all of this because we got word today that JD was accepted into the Car-T Cell clinical trial at Children’s Hospital of Philadelphia! We don’t have specific dates yet but we are among for hopefully having our first visit to Philadelphia, possibly April 30th and to collect his cells on May 1st. We are so excited and optimistic about this treatment option for Jadier!! As we plan for this journey we expect to have some travel expenses. The clinical trial does provide housing for us but does not cover travel. From Mobile to Philadelphia it’s about a 17 hour car ride ‍ or about a 5 hour plain ride. For our first visit we plan on going by plane since we will only be in Philadelphia for about 3 days. For our second stay we plan on possibly driving because we will be staying In Philadelphia for about 5 weeks after the cell therapy has been completed. Travel, food, gas, medications are all huge expenses that we will be facing in our near future. We ask that if anyone is able to support us during this journey, to please donate to the GoFundMe that we have set up for Jadier. We can’t thank everyone enough for your endless prayers, calls, messages and support. We love you guys!! #JDStrong

Update:

JD underwent CAR-T cell therapy at CHOP on 6/11 and 6/12. After receiving his infusion he was admitted into the hospital with very high fevers, chills, difficulty breathing.. he spent a few days admitted at CHOP. The doctors were prepared for these symptoms and were able to treat them. On 7/8 JD had his last bone marrow biopsy at CHOP that later on showed that his disease was undetectable, MRD was negative!! We were so relieved and rejoiced at the fact that the CAR-T cells were working and JD could finally say he was cancer free! Since returning back to Mobile on 7/9 JD has been hospitalized multiple times due to a complication from the CAR-T cells known as Hemophagocytic lymphohistiocytosis (HLH). This is a severe hyperinflammatory syndrome clinically characterized by fever, hepatosplenomegaly, organ failure, neurologic toxicities, coagulopathy, cytopenias, hyperferritinemia, and/or hypertriglyceridemia as a result of underlying pathological immune activation. Along with this JD has had very low platelet counts, severe neutropenia, and extreme fatigue. He attempted to go back to school for a few hours a day because he wants to so desperately return back to normal but exhaustion won that battle. My parents attempted to go back to work as well but again has become impossible with JD in and out of the hospital and needing someone to constantly at his care. They are also feeling very defeated because Jadier was not approved for disability through social security, after fighting with them for so long. Today 8/27 JD is at CW with antibiotics, currently still running intermittently high fevers. We don’t have a clear plan of whats ahead or what to expect. We please ask that everyone keep him in your prayers and if you are able and feel inclined to donate to our family during this difficult time we will appreciate it so greatly. We thank everyone for all of your support. #JDStrong

Update:

On Sept 16 I got a call from my mom around 3am that woke me out of my sleep. I answered in a panic and my mom hysterically told me that my little brother had gotten worse overnight and that the doctors had decided that he would have to be intubated, sedated and put on dialysis. I was extremely confused at everything she was saying because just a few hours before that I was texting him! The night before, the doctors had made the decision to start chemo to kill off his car-t cells. His car-t cells were causing his immune system to go into overdrive and all of his inflammatory markers were extremely elevated. The car-t cells were causing more harm than good. When this decision was made his urine output was already on the lower side. His body had already been retain fluids for a day or so. He was already on bipap because his lungs were filling with fluid and he was having a hard time breathing. After midnight they placed a catheter in for a more accurate measurement. This was so so so painful for him. After that his status only got worse. His nose wouldn’t stop bleeding, so they couldn’t keep the bipap machine on, his O2 was dropping and that’s when the decision was made. They placed the dialysis line in his neck and they placed another central line in his femoral, on top of his port and the 2 IVs he already had. After I got my mom’s call I never went back to sleep. I went into my living room and I prayed and prayed. I got ready for work and while I was at work I got another call from my mom that sent me into a spiral. Hearing her say “they’re doing everything they can to save his life” crushed my already broken heart into a million more pieces. His blood pressure was dangerously low. He was on multiple pressors, on the vent and on dialysis. My sweet work family understood that the only place I need to be at that moment was with my family. Rene and our sponsor, our angles from above were able to get my older brother and I plane tickets to Philly for that same day. I rushed home, quickly put a bag together and hit the road to Pensacola. We unfortunately missed our flight but caught that 5 o clock flight to Washington DC and then from there took a flight to Philly. We arrived to Philly around midnight. We went straight to the hospital after we landed. NOTHING could’ve ever prepared my brother and I for what we saw when we walked into that ICU room. Our little brother, connected to more machines than we had ever seen, fighting for his life. It had now been 24 hours since he had been put to sleep. After I got myself together I said “heyyy pookie” to let him know that I was there next to him. He instantly tried to move his head to find my voice. My heart jumped for joy. I could see a tear rolling down his cheek. The next day there had been some improvement in his status but not much. In the late afternoon he started to wake up and move his arms around. He signaled for his phone and started typing out messages! We couldn’t believe that he was doing that! He was able to communicate with us and the doctors and nurses that way. As the days progressed he started getting better by the grace of god. My brother and I were able to be with him for a few days and back home we came. After we left he was extubated. His kidneys were still trying to catch up so it took some time before the dialysis machine was disconnected. Little by little more and more things were being discontinued. He’s been out of the PICU for a few days now, he’s up and walking on his own, getting stronger and stronger by the day. He’s always been VERY involved in his care, so naturally, he asked the doctors exactly what happened that night. That night, a month ago, Jadier’s lungs, liver and kidneys failed. God as the miracle worker that he is, spared his life. He was in that ICU room while all those doctors and nurses worked to save his life. We are full of gratitude for this blessing. Jadier has a long life ahead of him. It’s been full of challenges but he is truly the strongest person I know. As for what is the next step for Jadier in his journey, we don’t know. He will have a bone marrow aspiration next Tuesday. This is to check is there’s any disease. Now that the car-t cells are gone there’s a possibility that it may come back but we rebuke that in the name of the lord and we pray that his body will continue to be free of any disease. We thank each and everyone that took the time to pray for him and our family, that made a donation, that called and messaged to checked in on us. We are so grateful. We are hopeful that by the end of the month my parents and Jadier will be back home, in Jesus name ❤️

#JDStrong

Update:

On Oct 25, my parents and JD were finally able to come home! They are so glad to be home!! JD labs have been holding steady thankfully! We don’t have the bone marrow results yet that were done in Philly but we are praying for good news. We thank everyone for all of the support that has been shown to our family and to JD!!

#JDStrong