Ronin Xavier Ham was born on May 11th, 2010. After 16 hours of labor, he came into this world as a beautiful, innocent, loud but precious little man. He was 8 lbs, 4 oz and 21 inches long. He was the amazing part of mine and Caleb’s world that was missing. He was so adorable, the way he slept so quietly, his little nose, toes and hands. You don’t realize how much you can love someone until you have a child.
Over the next few months, he started sitting up, crawling, standing up. It was so cool to see him grow and learn new things, even though it was all going too fast. For Ronin’s first Christmas, he was 7 months old. It was really fun shopping for him, and watching him on Christmas morning. Even though he didn’t really know what was going on, I loved being able to spend such a special holiday with him.
Before we knew it, it was May. I could not believe a year had already passed! It made me happy and sad all at the same time. We decided to have his birthday party at the park, we BBQ’d and it was a lot of fun. Our family and closest friends were there. It was Mickey Mouse theme, his favorite. We also planned a trip in November to Disneyland in California with my parents and brothers. We were so excited to take him to Disney. I have always loved it and couldn’t wait to take my little one there.
The summer of 2011 was a lot of fun, we took Ronin to the beach, the park, the zoo and to a indoor play place where he played with his cousin. He loved it. He loved everything he did, he was exploring the world in his own little way, and watching him do it was awesome.
We also went on two road trips, one to Washington D.C to see Caleb’s brother Jake, and another to New Jersey to see my family. Both were a lot of fun, and Ronin was so good in the car. Both of them were 10+ hours and he did great!
In mid September, Ronin kept waking up with big bags under his eyes, and I just figured it was his allergies. He wasn’t acting any differently, just the happy, sweet little boy he has always been. A few weeks later, one day when we got home from grocery shopping, I carried him into the house and when I was put him down, he just sat down on the ground. I said “Ronin what are you doing?” he didn’t get up to run away, he didn’t whine for me to pick him back up, he just sat there. It was really strange. I carried him to the living room, put him on the couch and he crawled down on the floor and just sat there. This went on for about a day and a half, so I made a doctors appointment. The morning of his appointment, he woke up with a bloody nose, which he had never had before. He also looked really pale. I was really nervous and couldn’t wait to get to his doctors office. We went in and his pediatrician didn’t like the way he looked. He ordered blood work to be taken, and he wanted the results right away so he sent us to a local hospital because they would have the results later that day. He said he might be anemic, but he didn’t know for sure. He was hoping it was nothing worse. We came back to his doctors office and waited for the results. Caleb wasn’t feeling well that day, so he stayed at home. The doctor called us into his office. He asked me if I wanted to call his dad to be here with us. I said no, just tell me what the hell is going on. He told me his white blood cell and red blood cell counts where incredibly low, and that his platelets (which clot the blood) were also very low. He couldn’t diagnose him in is office, but he said these low counts are very likely to be Leukemia. I started crying. I held on to Ronin so tight, and I didn’t even know what to do, say, anything. He told me he wanted us to go to Children’s Memorial Hospital in Chicago tonight so they can treat him. He had already called them and told them we were coming. I will forever be grateful for his pediatrician, because other doctors might not have done blood work right away. So the next thing I had to do was tell Caleb.
I called his sister Alisha because I needed someone to be with him when I told him about Ronin. I didn’t know what to say, how to say it. I told him and he said he would right there. His mom, sister and nephew Reese came to the doctors office with him. Ronin’s pediatrician came in and told them all what he had just told me and that we have to go to the hospital to get the diagnosis. So we all headed up to the Chicago, in 2 cars. That was probably the longest car ride of my life.
September 27th was the day that we found out Ronin had leukemia. It was the day that changed his life, our lives, forever. It was the day that made us look at life so differently. We were scared. It was the worst day of my life, and I hope I never have to witness one worse than that. But we were hopeful. We were hopeful because our son, who we loved with everything we had, was going to fight and beat this awful, terrible, horrible thing that took away so much from him.
We got to the hospital around 8 at night, and were admitted to the ER. It was kind of like a big blur, all I wanted to do was crawl up and hold Ronin and cry. But I couldn’t. So we waited in a tiny little room in the ER and waited for the pediatric Oncologist (a childhood cancer doctor) to come in. They drew his blood, and gave us a bunch of snacks to keep him occupied. He was pretty tired at this point, but he was so good.
The oncologist came in and asked Caleb and I to come into a consultation room with him. He did confirm that Ronin had Acute Lymphoblastic Leukemia, or ALL for short. He explained everything to us, to what it was, what they were going to do that night and that they were going to start treatment early the next day. He was so thorough, thoughtful, comforting, and we did have a lot of questions, which he answered all of them. He told us that they have no idea what causes this cancer. It isn’t hereditary, there isn’t anything we could have done to prevent it, there isn’t anything I did while I was pregnant to cause it; they simply don’t know.
But he did give us some good news. He said that his age was the best possible age to have it because it is the easiest to treat, as long as his body responds to the treatment. He said that there is a 95% chance of survival from this childhood cancer. And that is the most common childhood cancer, so they have many different treatments for it. So even though it was cancer, it was something that so many children have beaten and gone on to live long, happy lives. That is what we needed to hear. We were able to take a breath and sit back for a minute.
Acute lymphoblastic leukemia is a cancer of the white blood cells. Lymphocytes are a type of white blood cell that the body uses to fight infections. In ALL, the bone marrow makes a lot of unformed cells called blasts that normally would develop into lymphocytes. However, these blasts are abnormal. They do not develop and cannot fight infections. The number of abnormal cells (leukemia cells) grow quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needs.
9/27/11~We were admitted to a room up on the 4th floor, the Hematology and Oncology floor, around 2 am. Caleb’s mom, sister and Reese went home, they were so amazing to stay with us all night. Our nurse was Erin, and she is someone we will never forget. She was with us through our first night of hell and she was one of the nicest people I have ever met. They had put in a temporary needle IV in his hand down in the ER, and were going to put in his PICC line (an access to his vein for the IV that stays in his arm) the next day. I was sitting in a chair, with Ro on my lap, and he moved and his IV got stuck on the chair, and it came out. I called his nurse in, she helped clean up the mess, and tried putting an IV back in his hand. She tried a few times, and couldn’t get his vein. So she called in another nurse, no luck. They called in about 5 other people before someone finally was able to get one back in. My poor baby was poked so many times, it was awful to watch. We all tried to get some sleep after that, because we had a very big day a head of us.
9/28/11~The next day went very slow. We were woken up about 5 times throughout the night, and Ronin was taken into surgery early. They put in his PICC line, checked his bone marrow and did a spinal tap to start chemo in his marrow. It was really scary, I know people go under anesthesia all the time, but I was hoping that my son, especially at 1 year old, would never have to go under. The surgery lasted a little over an hour, and Caleb and I really couldn’t do anything to get our minds off of it. We just waited for the surgeon to come in and tell us our little guy was ok and awake. When he did, we felt better. We went to see Ro and he was so incredibly groggy. But he looked good. We all went back to our room a little later and we met Ronin’s nurse practitioner Amy and his oncologist, Dr. Hijiyia.
They went over what would happen in the next month, and that they would check his bone marrow again on day 28 to see how the chemo is working. We would stay in the hospital until Saturday, and then come back for weekly outpatient clinic visits for 3 more weeks.
We met a lot of people in that first hospital stay, the Child life specialist, who makes the patient feel comfortable while they are at the hospital. The volunteers and the Parent Wise team, who are parents who have had children with cancer. We also met our social worker Joni, who has helped us with paperwork and so much more.
10/1/11~We were able to go home! We were so happy. We were taught before we left how to care for his PICC line at home; that was scary. I was so afraid I was going to do something wrong! Caleb was really good at it, I had him do it for about the first 3 weeks. Now I could easily do it in my sleep. The hospital also set up the home nurse system, and they came on Monday to give us all the supplies to care for his line.
**I will continue later, I have to go tend to the little one :) ** <3 Nicole
