Carson is an amazing little boy. He is sweet as can be, the best little brother and an absolute blessing of a son. He is the most loving, kind, optimistic, happy little soul there is.
We were brought to Beaumont Royal Oak by ambulance from Beaumont Urgent Care the night of August 11th. A week prior I had brought Carson into his pediatrician addressing concern for how easily he was suddenly bruising, his yellow/pale tone to his skin that seemed to come overnight, and his sudden clumsiness (he was falling down a lot, running into walls, slipping, etc) Our pediatrician immediately dismissed my concerns and told me “He’s just an active little boy! If the bruising was accompanied by a rash then it would be cause for concern” and she sent us home. Days later, while changing him into his pajamas, my husband found small red dots (petechiae) on his inner thighs. We immediately put him in the car, and headed to urgent care to get his labs done…everything that night was a blur. When urgent care called for the ambulance my heart didn’t just sink, it fell completely out of me. As I was trying so hard to fight back tears and throwing up in the ER of Beaumont Royal Oak….my sweet baby was telling me “Mama? Mama smile! Please, it’s okay, look… see? I’m okay! it will all be okay mama. Please mama, please smile.”
On August 12th 2023, just weeks after we celebrated his 4th birthday, our beautiful baby boy was diagnosed with ALL Cell B Leukemia. Our entire world shattered.
We were told based off of the genetics of the cancer cells, Carson being under ten years old, the amount of cancer cells present in his lab work, and no cancer being detected in his spinal fluid, that Carson was considered “standard/low risk” a day later his port was put in and chemotherapy/phase 1 of treatment began. On day 29 of phase 1, the last day of the phase, bone marrow was taken and sent off to John Hopkins. In every 10,000 cells, the test from John Hopkins needs to detect less than .01 cancer cells. Our baby woke up from surgery, and we went home…eager for a break of all the at home meds and all of the chemotherapy, worried sick and anxious about his results. Days later our wonderful oncologist called us (we LOVE her. Without her I do not know how I personally would function. Not only is she an amazing, genius doctor, but she is a loving, supportive, optimistic, wonderful person as well) she called to let us know that our hospitals FLOW test came back “negative” for any residual cancer cells. This is always known as a good indication that the John Hopkins test (John Hopkins is able to magnify the results the highest possible) will come back clear. It was the most amazing news. We felt like we could finally breathe. The next day, she called again. The John Hopkins test came back showing exactly .01 cancer cells in every 10,000 cells. Our baby tested right on the cusp. Our oncologist told us this has never happened before…kids either test above .01 or below it. She reached out to her oncology team, and her colleagues and decided to be safe…she was moving Carson from “standard/low risk” to “high risk” treatment. This meant that phase 2 would have additional chemotherapies added into it and it would also be 4 weeks longer than standard treatment. It also meant that phase 3 treatment would be done in patient admitted into the hospital every ten days for 2-4 days for a period of 58 days. Again, our hearts shattered.
Right when phase 2 started, Carson spiked a fever and we had to bring him into the hospital. It turned out to be a bacterial infection, very dangerous. Thank God it cleared without any bacteria entering around his heart valves. Only 4 weeks later, we brought him in again for another high fever…it was another bacterial infection. This time PICU was involved as he had an extremely high heart rate and his fever would not break. The labs taken grew the same bacteria on them as the first bacterial infection and our team knew right away that it meant his port was infected. It had to come out. The next day his port was removed, and a pic line was put in his arm so that we could continue treatments. Again, thank God there was no bacteria that entered anywhere by his heart valves. Until his port site healed, we had to flush his pic line daily- the first ten days home we needed to continue antibiotics through his line (same as bacterial infection #1) and everyday after we had to flush it to prevent any possible clotting of the line. Throughout all of this, Carson also developed an allergic reaction to one of the chemotherapies used throughout the phases of treatment. It is not uncommon to develop a reaction to this chemo during the second or third time it is administered, so the kids are always pretreated prior to the chemo starting and then monitored an hour afterwards in clinic before going home. It was Carsons third time receiving this chemo when the reaction started 15 minutes in. It resulted in an epipen and staying in the hospital overnight to be monitored. Now, when this chemo is used in therapy- it is replaced with a chemo in the same family, that does the exact same thing but the only way for it to be administered is by shots into his thigh muscles. This has to be done in clinic so he can be pretreated and monitored afterwards, one bag of the chemo he had the reaction to, is equivalent to six shots. The shots are extremely hard on Carson, he has to go through being accessed each time so that he can be pretreated, the shots burn, it’s just horrible. When his port site healed after phase 2, a new port was put in, and his bone marrow was re taken and sent off to John Hopkins for a repeat test. Although our oncologist constantly re assured me with Carson’s first results being as low as they could be to be detectable by John Hopkins- that she was confident he would have tested in remission even after only completing part 1 of phase 2, we were still worried and anxious as can be. The amazing news came the day before Thanksgiving, our baby was officially IN REMISSION. The best news we ever had.
Carson and I spent the month of December and into January, in and out of the hospital for 2-4 days at a time. Every ten days, give or take a day or two (depending on how quickly he cleared the prior stay) heading back to the hospital. Every other stay we went down to short stay for a lumbar puncture of chemo first, then getting into a room hooking up the quick runs of the other chemos and then having high dose 24 hour chemo run through him.
Throughout all of the throwing up and all of the pain, he still remained happy and positive. Our team would come into our room everyday, even while Carson was throwing up he would be telling them jokes to try and make them laugh, heaving into a pal, wiping his little face and telling the rest of the joke. Leaving the hospital after our fourth and final in patient stay, was filled with joy. We had a giant clap out done for us, lots of bubbles, lots of tears and tons of joy. After phase 3, Carson officially competed the portion of “high risk” treatment…phase 4, phase 5 and maintenance now mirror “standard treatment”.
Throughout this all, Carson has remained so happy and positive. We are now in phase 4..one of the hardest phases, and it has not been easy. We started phase 4 off with the shots right away, and a chemotherapy that made him very sick..and is now also causing his hair to fall out. He held onto his hair for so long, but now the daily, bold reminder of this nightmare is present. We are counting down the days until this phase is over and we are able to move into the last of the 5 phases. After phase 5, we will head into maintance for the remainder of 2.5 years. Carson’s body will finally be able to fully heal, he won’t have any restrictions. His life will be back. We will have to go to clinic here and there for lab work and chemo through his port off and on..but nowhere near as intense as the 5 phases of treatment are. He will also be on daily oral chemo at home accompanied by other meds on and off. Again, nowhere near the nightmare we have been going through. He will heal, and he will have the life he deserves back.
Thank you all for reading Carson’s story and for the love and support. It means the world to us. We are so grateful for each and every one of you.
Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick's Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
