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.

1 comment:

  1. Alana, your account of the events are amazing. You are doing a great job....I can't wait for the next one.