Thursday, June 23, 2011

The Phone Call We Had Been Waiting For

After a bittersweet Christmas with my family, the following month was met with so much worry that it was hard to focus on anything else. I would know in a few short weeks whether Tyler was in remission or not. I would know whether there was hope for his future. Then came the day to go into the hospital for a bone marrow aspiration and spinal tap, after the induction phase of Tyler's treatment protocol, which was a month long. I sat in the waiting room, feeling my stomach in my throat, just praying to God that we would have a good outcome. Tyler came out of anesthesia just fine, as he always did. We were sent home and told that the results would probably not be known until the following week. I thought to myself "WHAT"? How could I wait that long to know what would become of my precious son. Then later that evening, we got the most unexpected phone call. The one we had been waiting for but were told wouldn't come until the following week. I answered the phone, and just listened. It almost felt surreal once I knew who was on the other end of the line. My husband, kids, including Tyler, and my parents were there and they could see it on my face, the answer to the question we had all been anticipating. Everyone just stood still, waiting for my phone call to end. I almost couldn't breathe let alone talk and pass on the news that I had just received.  Tyler had gone into remission and because his doctor and clinic staff, who had become so attached to Tyler, couldn't wait to pass along the miraculous news, they called us the minute they got the results. Tears welled up in my eyes, as the news sunk in. In my heart, I felt that the news wasn't going to be positive. I was so happy as I jumped up and down for joy. I felt a huge sigh of relief and felt for the first time since this started that my son may survive this illness. I didn't want to get ahead of myself though. I knew that we should take one step at a time as we had a long journey ahead of us. I just celebrated the good news with my family and reminded myself of how blessed I was at that very moment.

Saturday, March 26, 2011


The doctor and his "team" came into Tyler's room, and I wasn't sure how to feel. Why did his whole team join him? Was it unexpected bad news? Was it routine when providing a diagnosis? I suddenly felt sick to my stomach. I was scared, I knew something wasn't quite right. Then he explained to us that although he consulted so many prestigous doctors around the country, whose opinions' he truly trusted, no one could agree on a diagnosis for Tyler. I am sure this was a severe disappointment to him, but because he was Tyler's doctor, he would have to make the decision on what to do. We all knew that whatever he decided, Tyler's fate was truly in his hands, but we trusted him. So...he made the very difficult decision, which he later told us was a gut feeling, to treat Tyler as if he was diagnosed with ALL, which is defined as Acute Lymphocytic Leukemia. He also added that during all the testing that had been done, they discovered that Tyler had T-Cell ALL, which is an extremely aggresive form of Leukemia and more rare. I was thinking to myself, "Of course it's rare, everything about Tyler's case is rare". I couldn't stop wondering why this was happening to us. I really didn't know what T-Cell ALL meant in terms of cure rate. But I did later find out that this form of Leukemia is harder to treat and attacks the t-cells, thus the name. Because of the obscurities in Tyler's case, there were no known treatment protocols in place. So, after making the tough decision to treat Tyler as if he had T-Cell ALL, and knowing that he had Myloid cells present in his bone marrow, the doctor created a protocol for Tyler. This protocol followed many of the same procedures as the original T-Cell ALL protocol but he added more intense aspects to it. I was handed a binder with 2 1/2 years worth of treatment for Tyler. But we needed to get past the first step before we even proceeded and that was to get Tyler into remission.

In order to begin the Induction phase of the treatment protocol, Tyler had to have a central line placed in his chest which is called a Broviac device. This will remain in place for the duration of treatment and will help facilitate the administration of chemotherapy which occured on a weekly basis for a 2 1/2 year time frame. The Broviac device that Tyler received had tubing the was placed under the skin near his corroded artery and exited his body through a small hole in his chest. The tubing that protruded from his chest had two 2 lumens, or 2 portals. They hung about 2 feet from his body but we twisted and taped the tubed to his chest to keep them in place and under bandaging. I had to clean the skin around the hole every other day,  in a very meticulous fashion to prevent infection, which was something that Tyler ALWAYS resisted. It was not comfortable for him and it truly made me nervous that he could get an infection based on a mistake I could make with cleaning. So, the Broviac was in place, and now we could begin chemotherapy.

The first phase of treatment is called Induction. On December 20th, 2001, Tyler was given his first round of chemotherapy. He was givent the following agents: Vincristine, Doxorubicin, Prednisone, and Intra-thecal Methotrexate. However, because we were not sure of his reaction from these chemotherapy drugs, Tyler was given antiemetics to help prevent nausea. He was also always given Bactrim, routinely, which is an antibiotic. His first round of chemotherapy was complete. The most memorable moment of his first treatment was when Tyler came back from the treatment room, he felt hungry and insisted on eating Cheetos, which had always been one of his favorites. He probably ate half the bag and then mentioned that he was feeling a bit sick to his stomach. We knew it was the chemotherapy and before you know it, the cheetos Tyler had just eaten were on the floor. I don't think he ate Cheetos for a long time after that.

As we approached Christmas day, we were told that if Tyler's blood counts were in a safe level, we would be able to go home. Every morning, a nurse came in to draw blood to measure these counts. The numbers they paid attention to the most were the ANC, which I mentioned earlier, the white blood cell count, red blood cell count, platelet count, and I am sure other numbers that were less significant to us.  It was Christmas eve and Tyler's numbers looked good so we were able to go home and enjoy Christmas morning with our family together. Because his ANC was still pretty low, and vulnerable to bacteria, he was not able to leave the house that day, nor have any visitors with any illness inside the house. We were so careful because Tyler refused to wear a mask which would certainly be helpful and we didn't want to end up in the hospital so soon after we left.

It was a bitter sweet day, Christmas 2001, because although I had my son home, which made me so happy, I was still so worried about whether by the end of Induction, which lasted 1 month long, Tyler would go into remission. This was one of the main markers to whether Tyler would make it or not. I tried not to think about it, that day, and focused on how important my family was to me, and told myself at that moment to NEVER take anything for granted.

Wednesday, March 16, 2011

Those Shocking Words

Once we were done checking into the hospital and got settled in our room, the doctor came in to meet us. He introduced himself as Dr. Yim, a leading Pediatric Oncologist. We waited for his words, which seemed to last for eternity, the shocking truth that we were going to lose our son. Then it came, "I believe that Tyler has Leukemia".  Then, I took a huge breath before he delivered the fateful news, but it didn't come. He said "The type of Leukemia that I believe Tyler has, has a 70% curable rate."  Wow! I really didn't expect that but it did place an ounce of relief upon me that Tyler might make it. However, we really weren't prepared for all that was to come after that.  I was a mom, of three children, with my baby being only 11 months old when this process started. He needed his mommy and I was painfully made aware that I wouldn't be there for him like I should have been. My oldest had just started Kindergarten. What would I miss? How could I not be there to help her with her homework. My thoughts took me to how I might miss the milestones in my other childrens's lives and that hurt. But what was I to do? My my very sick child needed me more.

At this point, Tyler was very tired and lifeless. We were about to start the beginning process of tests, pokes, and procedures. We were walked down the hallway to a procedure room, where Tyler was put on a table. We were told in advance what was about to happen, as they would need our help for a successful outcome. The bottom line is they needed to set up an IV for Tyler in order to run some blood tests, and administer necessary medications. Also, we were told that the next morning, Tyler would be having a bone marrow aspiration done and they would need to put him under anesthesia because of the pain involved in the process. The thought of that made me cry. Upon the nursing staff attempting to hold Tyler's arm still to get the needle in his collapsed vein, he struggled intensley. We struggled to keep Tyler still and in place but we were not successful. Instead, they used a technique that they have used many times with the younger children, to hook up an IV. We were told to wrap Tyler's whole body in a blanket as tight as we could, with the exception of one of his arms. This way, he is in a fashion, restrained and unable to move. He was screaming so loud, and continued to struggle. It took several pokes to find the right vein but by the end, Tyler was exhausted and so were we, which made the task a little easier. Success! The IV was in, and they drew blood samples to test his red blood cells, white blood cells, and to test for any infections he may currently have.

We were given permission to go back to Tyler's room. Once there, Tyler climbed into bed, and drifted off to sleep. This gave my husband and I a little time to talk for the first time about what had just happened. Neither one of us slept that night. An hour later, the nurse came in with a syringe in her hand and a pint of blood. She explained to us that Tyler had a bladder infection, which had most likely occurred because of his immune system being comprimised. She also explained that Tyler's red blood cell count was extremely low and that he was anemic, which now we know accounted for his lethargy and paleness.

The next morning, Tyler woke up with more energy and more color in his face. He actually wanted to get up and play, which was a welcome sign. He didn't know that in a little while, he would be taken into a procedure room to do a lumbar puncture to remove spinal fluid and a bone marrow aspiration for testing. When it came time, we were walked down to the room and given a step-by-step rundown of what the procedure entailed. The doctor showed me the syringe and I couldn't believe how large it was. As expected, Tyler was very frightened. He was lifted up to the table, placed on his back, and then the anethesia was administered. We were asked to leave but were told that we would be summoned once the procedure was completed. Of course we wanted to be there when Tyler woke up. Suprisingly, the procedure only took about 15 minutes. Tyler was awake in about 30 minutes, groggy but not in pain. Once he was lucid, we were escorted back to our room, where Tyler continued to recover from anesthesia. Now we just waited for the results of the bone marrow testing. This will determine whether Tyler has Leukemia as the doctor had suspected. As the hours ticked away, we questioned why it was taking so long. This is cancer we are talking about, and from what I had read to that point, it's supposed to be treated immediately. We wanted a diagnosis so we could procede with making my little boy well again. But, the diagnosis didn't come. It wasn't until the next morning the pediatric oncologist came in to give us the news.

The doctor verified that Tyler had Leukemia, but what we didn't know was that there were many forms of Leukemia. In order to follow the correct treatment protocol, they needed to determine EXACTLY what he had. Well, our doctor, as highly regarding in his field as he was, was preplexed. He found that Tyler had two types of Leukemic cells in his bone marrow. To be exact, he had Myloid cells and Lymphocytic cells, which are treated very differently. So he reached out to the top Oncologists in the country by sending Tyler's bone marrow sample for review. When those reviews came back, some of the doctors suggested treating as Acute Myloid Leukemia and some came back suggesting to treat as Acute Lymphocytic Leukemia. Tyler's doctor was unsure where to go from here. He told us later that Tyler's case kept him up at night because he had never seen a case like this in all the years he had been practicing. So, all the while, we are waiting, Tyler is getting sicker, we are in fear that we are waisting time. But what we didn't understand at the time is that treating cancer is very methodical. We had to wait until we knew for sure what we were dealing with, in order to proceed accurately. One mistake and we may have an undesirable outcome.

So, we waitied. Tyler was not able to leave his room because of his ANC count(absolute neutrphil count), which meant that his immune system is very low. An ANC of 1000 or higher is low risk, but we found out that Tyler's ANC when admitted to the hospital was 350, which is why he developed a bladder infection. If he were exposed to germs, his body would not be able to fight off any infection. Also, no one that had a cold, cough or any other illness was allowed to visit him. We were told that he should wear a mask, but because he was 2, he wanted no part of that. The nursing staff loved Tyler, they thought he was so sweet and such a charmer. They would give him special attention, bring him toys, and activities to keep him occupied.  It wasn't until two more days that our doctor came through the door with Tyler's true diagnosis, and the treatment plan we were to follow. I felt a small sense of relief that we could finally move forward, however, I was still very concerned that we are not dealing with a routine Leukemia diagnosis. There were special circumstances and we didn't know exactly what that meant.

Tuesday, March 15, 2011

Day 1

It was a usual cold Friday in December, the 14th of 2001 to be exact. I was a mom of three young children, with one girl and two boys, all under the age of 6. At the time, I was a working mom, busy like most are, trying to help support our family while my husband built his business. I had hoped that one day, as my children grew older that I would be able to quit my job and stay home with them. Our family was very happy, healthy, and looking forward to the future. Little did I know that our world was about to change.

As I prepared to leave the house that morning, I noticed that Tyler was a bit more sluggish than normal. I had reflected back to the previous weekend when he was bed-ridden due to the common flu, at least that's what I thought. I assumed that he wasn't 100% yet, but with no fever, I dropped him at daycare along with my other two kids and off to work I went.

It was Christmas time and we were due to travel to relatives for a Christmas gathering that evening. At work, I kept thinking about how exciting Christmas time was with young children, and how their faces light up when they search underneath the tree for anything with their name on it. There is nothing more priceless than that innocence of hearing them talk about how Santa brought them just what they had asked for. As the day went on and my daydreaming continued, I received a phone call from our daycare facility telling me that Tyler had spiked a low-grade fever. Because my husband was a lot closer to Tyler, he went and picked him up as I scheduled an appointment with his pediatrician. My first thought was that he had some sort of infection, and if left untreated, he would not be well for Christmas. husband and Tyler were directed to an examination room where they waited for the doctor. As it was described to me and I will quote my husband's words "Dr. Warden took one look at Tyler and "knew"", and without examining him, did a finger poke to obtain a small blood sample. The doctor also told my husband that Tyler was extremely pale but never led on how severe the situation was. After testing the sample, the doctor determined that Tyler had an elevated white blood cell count and that we needed to have some more tests done. My husband was directed to a local lab, but when Tyler found out that he was to be poked, he ran the other way. Afterall, he was only 2 1/2 at that time, and what kid isn't scared of needles.

Tyler had to be restrained, but the lab was successful in completing the task. My husband and Tyler were sent home and were told to expect a phone call from the doctor with the results.  Because we had been expected at our relatives that evening for a Christmas gathering, and it was 8:00 and we still hadn't heard from the doctor, we decided to head out. My husband had given the doctor his cell number so we knew he would be able to get in touch with us if it was something serious.

Well, we were almost at our destination when we received the phone call. We were told that we needed to pack our things and bring Tyler to the hospital to be admitted immediately. That is all we were told. My husband and I broke down in tears, and honestly, I barely remember the 45 minute ride home. Was it just a dream? I wish!  Upon packing our things, and dropping our other two children with their grandparents, we arrived at the hospital where we were met by another doctor. At this point, we knew that this was very serious, but we really didn't know to what extent. All we knew is that we were so scared that we were about to be given a diagnosis that would change our lives forever.