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This is Kayden Samyn he's a seven year old little boy from Linn county Ks. He is currently fighting Leukemia. He is the bravest kid we know

Kayden's Story…His Mother's Perspective

This is Kayden and he just turned 7 in July. He lives in a small community in SE Kansas and has three older sisters - Jessica, Alyssa, and Kelsie; three older brothers - Freddie, Ethan and Miles; and one younger - Landyn. My name is Karri and I am Kayden's mother and Dale is his dad. Kayden is a very good natured, loving, and caring little boy. He enjoys all the things a 7 year old boy normally does, but his favorite pastime is anything sports! And that is where this story begins. Kayden played soccer (his favorite) this past spring; towards the end of soccer season, he came down with a cold so I kept him out of his early morning soccer match the next day, however, he “just had to play” in the afternoon match, so I checked his temp and off we went to Paola. He played well but I felt he was more winded than usual and took him to the doctor; he was put on an antibiotic and recovered shortly. Nothing out of the ordinary! Soccer ended and he finished the season as competitively as ever. Next stop, T-ball! He was so excited to play as he was unable to the previous year due to a broken collar bone. Practice started and he was very energetic and excited. He loved his teammates; he loved his coaches; all was good. A few games into the season, towards the third week of June, I noticed he seemed more tired than normal during practices and the games. He just didn’t have the “drive” or motivation that he normally does; I also noticed that his neck looked a little swollen;thicker than usual but he said he felt fine. No sore throat, no pain; only difference was a slight weight gain which seemed “normal” considering he was out of school and eating/snacking more often. I decided, however, to be safe rather than sorry to take him in to his doctor just to be sure. Blood work was taken which all came back normal and we were going to monitor the swollen nodes for a couple of weeks and watch for any other symptoms; fever, headaches, etc. If the gland issue didn’t resolve itself within a couple of weeks we needed to consider seeing an ENT. I was a little worried, but Kayden’s blood work looked normal so everything was probably “OK”. A couple of weeks later, the glands were still the same; it was the second week of July and T-ball tournament time was upon us; I could tell Kayden was struggling to play; the heat bothered him more than normal, he was flushed; having headaches; and even though he knew what he “needed” to do, his body was moving slower than normal and he was becoming frustrated. He said “mom, I am fine!”, but I knew better and took him in to his doctor the next day. He was put on an antibiotic and the glands seemed to respond a little which was consoling to a point, however, not enough for a concerned mom! The glands were swollen on one side, no other symptoms but headache and an occasional temp of no higher than 100. I started poking around the internet looking for ideas about what could be causing the swollen nodes on just one side… could it be mono; could it be his dental work? An abscess? Reaction to the metal in the crowns? We went to the dentist…x-rays were taken; everything looked“wonderful”. I got a copy of the x-rays and brought them home…don’t ask me why. A few days later, still “searching” for answers, I decided to email the x-rays to my sister at the pediatric dental office where she worked in South Dakota. That same day I received a call telling me that he had a bad abscess under the crown and that it needed to be removed ASAP! I jumped into the van and off we headed to South Dakota; it was removed the next morning, July 18th. He felt better; no more headaches; no more fever; could this be over? We prayed it was. We waited two weeks for the glands to start returning to normal as they can take time….NOTHING. We went back to his doctor, who got us in to the ENT the same day…tests were scheduled for the following morning at the hospital. A CT scan, blood work, Mono, Cat Scratch Fever, and Lyme tests. The Mono came back positive the same day, August 2nd! Rest, fluids, monitoring the liver and slightly enlarged spleen…all were done and once again we waited for the swollen glands to subside. However, a week or so later Kayden started running a fever and the neck nodes appeared to be getting slightly bigger and he had one now on the other side…Kayden was immediately back into the ENT; a biopsy was scheduled for the next day, August 16th. The biopsy was done Friday and Kayden did great. We were supposed to receive the results on the next Wednesday or Thursday when he got his stitches removed. I waited, worried, tried to keep a positive attitude, worried again. On Tuesday, August 20th, I received a call from the ENT asking us to come in “immediately”. I knew this could not be good; why were they calling us “IN” two days early? My heart knew the answer, but my mind refused to even think about it. We arrived, got his stitches removed, and Kayden went to watch TV. (this can’t be a good sign either!) This was it…the moment I had been waiting and worrying about; the one I had been dreading, pushing out of my mind; terrified about…. I wanted to run out of the room! The doctor said: “well we got the results of the biopsy back and it is lymphoma”…”we have been on the phone all morning with KU Med and Children's Mercy Hospital; this is the name of your oncologist and she wants Kayden admitted today.” Today??? I thought this is too fast; this cannot be happening; I need more time; what do I tell Kayden?… Everything was a blur. I pulled myself together, collected Kayden from the waiting room and headed home to gather his things. We took Kayden and Landyn to grandmas for an hour so that calls and arrangements could be made and most importantly so I could decide WHAT I was going to say to Kayden. My daughter, who works for Kayden's primary doctor, said he suggested that we stop by and see him on our way to Children’s Mercy Hospital, so that he could explain things to Kayden. I agreed that would be best as Kayden truly trusts and looks up to him. His doctor explained everything in terms that Kayden could understand and Kayden left his office calm and ready to head to the hospital. I remember thinking we could not ask for a more caring and compassionate doctor and Kayden is blessed to have him in his life!

We arrived at Children’s Mercy Hospital and Kayden was admitted and taken to his room on the oncology floor. We saw several beautiful children on our way who were losing their hair; completely bald; some very ill and some playing and having fun. I remember wondering if this was scaring Kayden as much as it was me…but he was unaffected and just happy to meet new friends. What we were facing had just become very “real” to me. We immediately met part of his team of doctors and were told of the testing that would begin the next morning. Blood work, a bone marrow aspirate, a lumbar puncture, a port implant…all to determine where and what exactly was going on with the cancer. The tests were tough but Kayden did everything with a smile. His blood work came back as normal; just as it had done all the other times; the bone marrow, however, came back having leukemia cells…we now had a diagnosis of T-Cell Acute Lymphoblastic Leukemia or T-Cell ALL. The testing continued and of it is found in the spinal fluid, central nervous system, or testicles as there is a barrier which blocks the chemotherapy from passing to those areas. So far all of those areas look clear on Kayden, which is a blessing. Kayden then had surgery to implant a double port into his chest so that his blood can be drawn, he can have an iv, and his chemo can be administered through it; it saves him from being stuck by needles all the time. We met with Kayden’s team of doctors and were told the plan for treatment and a lot of questions were answered during that meeting. Kayden does not have a “stage” because leukemia is not rated that way; it is defined at this point as low, intermediate, high, extremely high…risk. The doctor said that Kayden is rated as intermediate or above and that is all that we will know at this point until we see how he responds to treatment. I asked how a child, who was normally very healthy and rarely ever got sick could end up with Leukemia. She said that it seems to happen like that a lot of the time; there is no “cause”; it just sometimes happens. It takes one bad cell which multiplies into many. Kaydens' leukemia attacks his whitecells which are like his warrior cells…the ones that fight off infections which makes him susceptible to everything by weakening his immune system. She explained that the chemo was going to attack the leukemia cells and kill them but that his normal cells could be affected too which would make him sick. The plan for chemo is aggressive because T-cell is a fast moving leukemia so we have to treat very fast and more aggressively then the leukemia cells multiply. She said she wants to kill 90 percent of the leukemia in the first 5 weeks and then spend the next phase of treatment killing 99 percent of the last 10 percent that are left; then wipe out the remaining one percent over time. For this first phase, Kayden will be returning to Children’s Mercy every Friday for 5 weeks for bone marrow aspirate, lumbar puncture, and various chemo drugs through his port; he will also have daily medications given at home on a specific schedule and not one can be missed. Kayden began chemo in the hospital on August 23rd. I remember watching the medication being hooked to the port and thinking they are poisoning my child. I felt like I needed to cry; leave the room; stop them… but my daughter grabbed me and told me to “get it together” for Kayden…I don’t know how she was that strong, but at that moment, she was my rock. Kayden handled the administering of the chemo through his new port well. That evening, he became ill and had a tough night. The next day he was scared; his urine, saliva, and tears were orange which we were told would happen, but was still disturbing. He handled nausea like a trouper and woke the next morning and asked “is my hair jumping out of my head yet mommy”. Always the silly attitude! He started feeling a little better Sunday and was scheduled for his last treatment at the hospital on Monday and then was to be sent home. Home? I had forgotten about “taking him home”…how could I take him back there? After all,the bathroom was torn apart waiting to be finished; the roof had started leaking due to all the rain last month; it was a mess and not ready for him and there was no way to get it finished in one day! So, I called his dad and told him to find me a place in town that had central air, a clean bathroom, and good carpet…something “ready” for Kayden by tomorrow! It was Sunday, how hard could it be, right? Well, he found a place and rented it the same day! I went home at 5:30 and the football players showed up at 5:45 to start moving what Kayden needed. My girls helped wipe down all of his things and get it set up so he could come home the next day. I went back to the hospital and was “trained” on how to care for him at home. Wow, there was so much to remember. It was terrifying and thoughts kept running through my head… How was I going to “treat” him myself? What if I did something wrong; what if he got sick? The doctors said that was normal and they gave me numbers to call 24 hrs a day if I had questions or concerns, anything! I was sent home with a grocery bag of meds; I mean it literally weighed10 pounds! I was nervous driving out of the parking lot, but Kayden was thrilled. He was excited about his new room and the fact that he didn’t have to share with his brother. He was a trooper about taking his medications even though the taste of the crushed pills made him gag; the liquids were not much better. He learned to swallow his pills the second day! The first week home has been a struggle with learning when and how to take his meds to avoid nausea. If he doesn’t keep down a med for ½ hour, then we have to re-dose until he does. By Thursday he was feeling pretty good and no more nausea; but then it was back to the hospital Friday for another bone marrow aspirate, lumbar puncture and more chemo through his port. He did well; but was pretty ill over the weekend. It is now Tuesday, September 3rd, and he is finally feeling better again….not looking forward much to Friday at all but we all know that this is what has to happen in order to move faster than the Leukemia cells are. Kayden understands this and is truly wise beyond his years. He is so strong; such a brave little boy. He teaches me something new every day…how to be happy despite pain and fear; how to make every moment count, good or bad; how to be thankful for little things and “everything”; how to smile through it and go on; how to laugh and cope; how to hope! The one thing he said that I will always remember was the day after his chemo; his bad day; he woke up after a really rough night and walked up to me and said “mommy, last night I prayed to God that he would make it so nobody ever got cancer ever again because it is really hard and I don’t want anyone else to have this”. He truly showed me what it means to be selfless. We are prepared to do everything in our power to fight this and keep Kayden “teaching” us every single day!
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