Charlie’s Fight

It’s going to be a long post!

Charlie Update: August 4th, 2023

We had to be awake and on the road by 5:00 am for Washington DC. Charlie got platelets and then headed into dental surgery. The surgery went well. Charlie had 7 teeth pulled, 3 fillings, 2 silver caps, and teeth cleaning with fluoride. He has only really been able to eat soft foods or stuff that kinda turn soft. He hasn’t complained to much of any pain but it is uncomfortable for him. While he was in surgery, I had an appointment with the Bone Marrow Transplant team to finish up my physical exam, mental health exam, family history/medical history, and also a crap ton of blood work so if this trial is his miracle, everything on my end will be done and nothing will stop the process. The nurses ended up blowing out 4 of my veins trying to retrieve enough blood for these 18 vials. My poor arms and hand is bruised terrible but they got enough blood. I passed the physical and mental health exam so just waiting on lab work to confirm I am healthy enough to be his donor. I was informed a week prior to transplant, I will have to give myself 2 different injections daily to increase my stem cells for collection. Whatever is needed to save my boy, this momma is going to do. We were exhausted by the time we got home.

Charlie Update: August 5th, 2023

Charlie woke up wanting to spend some of his money in his wallet. So he got his meds, got dressed, and headed out on the town with dad. They went to a few yard sales where charlie got himself some good deals, spent some money at Walmart on new gel blaster guns, and spent the morning making memories with dad. He is so proud of the electric guitar he found for $10 lol. Aside from his mouth being a little sore and swollen, you wouldn’t believe the dental work he had done because he doesn’t let it stop him. This kid has so much strength and will power to keep going, he is incredible.

Charlie Update: August 6th, 2023

Charlie slept maybe 3 hours and was awake around 2:00 in the morning with mouth pain and some asthma issues. A good breathing treatment, an ice pack, and several hours later, he fell back asleep. While Dante had a visit with his biological, Charlie went fishing with Brandi Brannon for the day. This let me get his room rearranged, reorganized, and house cleaned. My OCD is now content lol. He loves spending the day with her catching bass and other fishies. Charlie would fish all year long if we let him. We had dinner from Golden Corral with sis in law Sandy Campbell. We haven’t been able to really do that for a good while since Charlie’s diagnosis. It’s always good to spend time with family. Ended the night with baths and medicine.

Charlie Update: August 7th, 2023

We had to be awake and on the road by 8:00 am for follow up appointment in Fairfax, VA. Today is day 1 of Charlie starting round 3 of chemo to keep his cancer at bay until he can get his reprogrammed T Cells infused back into his body. He is on 2 different intense chemo drugs. The oral chemo (Venetoclax) is given for 28 days at 350 mg nightly. The liquid chemo is (azacitadine) given through his picc line and 97 mg. We do have to travel to the infusion center in Fairfax daily for them to give his azacitadine chemo through his line and also give him premeds to help with the nausea and vomiting. His ANC today is 700, his platelets are 15, and his HGB is 8.1. He is scheduled for platelet transfusion tomorrow while he is there for his chemo infusion. His nurse will also come to the house tomorrow evening to change his caps and dressing on his picc line. both boys got washed up and are fast asleep. This momma is getting them back on a school schedule routine now so it’s not a struggle next week for school.

We are all taking it one day at a time and doing the best we can during this difficult time in our lives. I am so proud of all my kids, husband, and myself for still maintaining our strength, fighting like hell together as one unit, keeping appointment schedules straight between 3 hospitals in 3 states, and just appreciating each day we wake up together. We have truly learned what it means to never take life for granted and to be grateful for what we have each day.

Being a parent, you never expect to hear your child has cancer. Let alone hear that the chances of us burying our boy is tremendously higher than him surviving, it is just life shattering. I feel like the air is just being sucked right out of me, I’m hardly sleeping much checking on him all the time, and my heart is just slowly breaking more each day that passes. I’m so damn scared to lose my son and now that we started round 3, it terrifies the hell out of me. Doctor said his little body could only handle 2-3 rounds of chemo before his organs start to fail and this 3rd round will make 1 out of those 2-3 rounds. I worry everyday if this clinical trial is going to be a success and be his miracle. I stay positive and strong all day long but boy when everyone is asleep, I break down and can’t contain the tears. This is the hardest damn thing to go through and I can’t even imagine what’s running through Charlie’s mind that he just doesn’t talk about. He’s so brave

#12charliestrong #hisfightismyfight #bonemarrowtransplant #leukemiaawareness #FUCancer

Hi , my name is Tracy i am fundraising for my 9 year old nephew Charlie who just last tuesday was diagnosed with Leukemia and also Myelodysplastic Syndromes . Charlie’s mom my sister Stacy and her husband Scott will be out of work until further notice they unfortunately pay all medical expenses out of pocket with bills going to be piling up the commutes back and forth my sister could really use any help she can get , she is one that doesn’t like to ask for help so that’s why my family is doing it for her. My sister is an amazing hard working mom of 3 she will literally give the shirt off her back for anyone and now it’s time we do the same for her . Charlie on Friday will be admitted back into Ivona Childrens Hospital where he will remain for the next 6-9 months undergoing very intense chemo treatments , the leukemia is in his blood . This little boy has been so brave and strong since we found out last week he was very sick . He told his parents and doctors i am going to get through this so i can ring that bell and get out of here . he does not want to be in the hospital lol . As his aunt i couldn’t be more proud of him . his fight is our fight even if you can’t donate please send positive vibes and prayers to our sweet charlie and our family . we appreciate and love you all thank you so much.

UPDATE MAY 17TH 2023

charlie had his 2 wire picc line put in last week then he was released again from the hospital awaiting a full treatment plan . so he got to spend time with family and enjoy a few days of fresh air , but now today this morning they have to be back at Inova Children's hospital for another bag of blood and also platelets . he will be admitted this time for a really long road ahead of him because he will start his chemo and at some point the bone marrow donor . please y’all it’s really about to get hard on my nephew because he’s undergoing really intense treatments due to the leukemia being and growing fast in every bone in his body and also his blood . he needs all the love and support he can get to help him through this as well as my sister brother in law and family . charlie is going to fight like hell an prove these doctors wrong as far as his survival being a 50/50 chance . he’s going to ring that bell an walk out that hospital healthier than ever before . these next 9 months are going to be extremely hard for everyone my sisters bills still piling up the commutes back an forth food etc with my sister being out of work and scott only being able to go back to work a few days a week they could really use all the help they can get . please if you can donate that would be amazing if not share the go fund me and the biggest thing of all please pray for my nephew . i love you so much stink now is the time to fight like hell and give it your all kiddo , your fight is our fight we got this babe .

#teamcharlie #charliestrong #FYOUCANCER #YourFightIsOurFight