Ace, Warrior of Acute Myeloid Leukemia, was nominated into our project by his grandmother and leagal guardian. Shortly after, I would receive a message his cancer has returned after being in remission. Ace's painting left our studio today, tears flooded watching the mail-truck leave knowing there's a child who will receive this gift and might know, even for a moment, how special he is to so many people. W
WARNING- YOU WILL CRY- I haven't stopped. Grandmothers are critical to a child's life; this relationship, here, is so beautiful.
Our relationship with Lisa started out like many others;
Lisa wrote: Are you accepting any nominations for fighter. If so I would love to nominate my grandson who was diagnosed with AML acute myeloid leukemia last March 2019. After chemo, radiation, and a bone marrow transplant his is in remission.
I didn't care about the nomination form, I wanted to celebrate with Lisa and Ace; of course we will paint for him! Soon after, I would learn about his journey through diagnosis and treatment. '
Here is Ace's story, told by his legal guardian and grandmother, Lisa. Your heart will ache. But, you will learn about the powerful love between a grandmother and her grandson. Lisa, you are an incredible person and a beautiful mother to Ace. You've stolen our hearts and we are so lucky to have the ability to paint for Ace.
March 28, 2019 I took ace to the ER because he was not eating, complaining of his legs hurting, saying he was tired all the time. He would play for 5 minutes then want to take a nap and this was day three of this.
His great grandmother and two Cousins has come over the day before and he didn’t play much with them. He mostly wanted my mom to hold him every now and then he would get up and go to the swing but it was almost like it wore him out just to walk ten steps. Anyway we talked to his mom who was also there and decided that is he wasn’t any better we would bring him to the doctors in the morning.
That morning the doctors office didn’t have an appointment for two weeks so we decided to bring him to the hospital. His mom stayed with his two sister who were 4 months and 1.4 years old at the time. He had nosebleeds for about two weeks; unsure how long the other symptoms were happening because he was at his dad's prior to this. I took him to the hospital in Mccomb, Mississippi.
Once we were in the Emergency Room they drew labs right away and what seemed like only a few minutes later the doctor came in to inform me that within five minutes the ambulance would be here to take Ace To the hospital in Jackson, Mississippi because Ace was very sick and needed blood transfusions. Now my head was spinning, I called my husband who worked two minutes from the hospital and then my daughter who was at home with the two small girls the ambulance was there as my husband walked in the room.
We were scared, didn’t have any answers only that Ace was very sick and now trying to figure out how to get his mom to the hospital as I had her truck. We knew she wanted to be there and needed to be there so my husband went home picked her and the girls up and drive the 3.5 hours to Jackson. Meanwhile Ace and I are in the ambulance on the way to the hospital without knowing what was wrong and as scared as I was I knew I had to keep it together for him.
We made the Ride to Jackson fun by looking out the back and talking about all the vehicles we saw. Ace was not sure of this adventure but he was in my arms and I promise him it all would be ok.
Once we arrived in Jackson we were placed in a room and they place an IV. When they admitted us in a room right away I just knew something was really wrong. This was not fun and very scary for Ace. Never having to have an IV at 4, this was not a good experience. So they drew labs after labs and doctors came in to inform me we had to wait for his mom to arrive. His mom, sisters, aunt, and grandpa arrived and they started the blood transfusion he needed lots of blood over the next few months.
The doctor pulled his mom in the room and told her Ace had leukemia.
At this time he wasn’t sure what type but that he was very sick and he would be admitted. I stayed with ace that night and the next morning his mom came back and the did the bone marrow aspiration to see what we were dealing with. This started on a Thursday by Saturday Ace was not doing well at all and we were all dealing with the AML diagnosis that was just given to us that morning. His dad had came from Kansas to be there also. Sunday we were offered a chance to go to st Jude’s research hospital and we were told this was Aces best chance to beat this.
We arrived at st.judes April 2 and by April 3 ace was on life support where he stayed until April 12. On April 10 Ace flatlined and CPR was done as well as the Defibrillator. This was so scary and I will never forget this day. So much has happens since and one day I will be able to get through the whole story.
After many chemo treatments, he had a fungal infection in his lungs. They had to treat the infection and stop the chemo. That was end of May. In June the lung infection was cleared up and they did a bone marrow aspiration to see what the leukemia was doing. It showed a decrease in the amount of leukemia but not enough to receive the bone marrow transplant he needed.
Two weeks later they tested again and there was another decrease and it was enough to get the transplant if the team would accept him! They quickly decided to go ahead with the transplant! The next few weeks were hectic with many appointments to get ready for the upcoming transplant .We will be closely monitored by his medical team for the next five years then once a year.
Ace was getting a half match transplant from his dad and was admitted on August 3 to being the radiation and Extensive chemo to get his body ready . The chemo was harsh he lost his hair again, he slept a lot more . It was hard to see him like this.
On August 14, 2019 he received his transplant one week later we were in ICU for Complications he had breathing issues and GVHD of the gut. Three days later we were back on the Bone Marrow Transplant floor and we left 15 days after his transplant, just in time for his 5th birthday which was celebrated by both sets of grandparents!
I am happy to say on day 30, after transplant, he was officially in remission and remains so. Ace is now a 5 year old that loves life, dinosaurs, monster trucks, play dough, drawing, sonic the hedgehog and attends school at st Jude’s research hospital.
His grandfather and I have relocated to Southaven Mississippi to be closer to st Jude’s. So that he can live a somewhat normal life.
I cried seeing the painting you made for him, it makes the statement of how this is a chapter/the cancer journey, and not the whole story, the wishes coming out of the story ...no words can express the joy this painting means and how well it tells his message. I don’t even have words to thank you enough I honestly don’t know of anything he needs right now other than prayers. I appreciate so much all you do for all these kids.
Lisa Bennett Langley
Warrior of AML
The Day is on one side, the night on the other; a stack of books open to dandelion whisps; in the corner the three crosses of Jesus' death. A verty powerful message of love and faith is represented
A grandmother has eniugh love to be enough love