Six months later Porter came home from a weekend at his dad's house looking very pale. I was slightly concerned but we are pale people and it was October. I just made a joke about him maybe being a vampire for Halloween. The next day, Monday, he came home from school and said he'd felt dehydrated in gym class. The teacher sent him for a drink at the water fountain but somehow, he ended up at the nurse. He had a slight temperature, 99.9 but it wasn't high enough to send him home. By the time I got him home that night he was at 101.1. I just figured he was coming down with something so I asked my mom to watch him the next day so I could go to work. I also made a doctor appointment, just in case it was more than a cold or virus.
My mom took him to the doctor on Tuesday and he still had a fever and was a little pale. Strep was going around, so they did a strep test and sent him home. He saw a doctor he hadn't ever seen before because his doctor was booked. A lot of kids were getting sick at this time of year, it was the week before Halloween. The strep test was negative but his fever continued so he stayed home with my mom again on Wednesday. Thursday morning he woke up really early and was screaming. His head, belly, legs and arms all hurt. Badly.
We rushed over to the doctors and once Dr. Dimik saw him he knew something was wrong. He called in another pediatrician for a consult and they kept pushing on his belly and around his neck and ears. I had no idea what was going on but when they were done they asked us to go for some blood work, to rule out a few things...like anemia, mono, some virus I'll never remember the name to and leukemia. I asked why we were testing for leukemia, I was terrified. He only had a fever. Dr. Dimik told me we were not testing for it, just ruling it out. I knew at that point before we went for the blood test that he had leukemia. As soon as the doctor said the word, my mother's intuition took over and I just knew it. We went to the lab around 1:00 and by 6:00 we got the call that the results were in and we needed to be admitted to the hospital and meet with some specialists.
On October 27, 2011 we checked in to Lehigh Valley Cedar Crest and Porter got hooked up to some IV fluids. It turns out that his hemoglobin and platelet levels were dangerously low, I knew nothing about the numbers they gave me that night, I just believed everything they said. Now, ten months later when I look at the lab results from that day, knowing what I know now, I realize he was so sick and can't even imagine how he was getting from day to day. He received transfusions immediately and in the morning they did his first spinal tap (to see if the cancer was in his central nervous system) and a bone marrow aspiration (they stuck a needle into his hip bone to withdraw bone marrow to see what kind of leukemia he had) and started chemo right away.
Porter was very lucky. We found out he has Pre B cell Acute Lymphoblastic Leukemia (A. L. L.). This kind of leukemia affects 75% of kids diagnosed with luekemia and it has an 80-90% cure rate. This mean he has an 80-90% chance of beating the cancer and having it never come back. But his treatment would be long and tough. When leukemia comes back, it often comes back in the central nervous system, so we learned that he wold have somewhere between 20-30 spinal taps over the course of his treatment to first test the spinal fluid for cancer cells and then to inject a kind of chemo to prevent it from getting in there. Also, it turns out that in boys it can often relapse in their testicles. So a boy's treatment is longer than a girls. Girls generally are treated for about 2 1/2 years, boys 3 1/2. This meant that since Porter was diagnosed a few months before his 9th birthday he would finish treatment around his 12th birthday!
So far the treatments have been crazy, some parts are more intense than others. He was initially hospitalized for 12 days. In November he got an infection- the chemo works to kill the cancer cells but also knocks out most of his blood cells and really compromises his blood cells (red, white and platelets). He has had around 15 blood and platelet transfusions at this point. That time he was hospitalized for about a week. He's gotten a few other infections since and has been in the hospital about six more times, the length ranging between four days and two weeks each time. In March he got really sick and turned septic. He had to spend several days in the PICU. He had three different infections and no immune system. His blood pressure crashed and he almost didn't make it. But the moral of the story is, he's a tough kid and fought very hard the whole way so far.
The day we told him he had cancer, I was so afraid of what his reaction would be. He simply said, "I have cancer? So what do we have to do to beat it?" He is so positive and always has a smile on his face. When he lost his hair he thought was the funniest thing and declared he really liked to be bald. Now it has grown back and it's blonde instead of brown. He makes friends with the new kids at clinic and always tries to help them through the hard times. He is always looking out for everyone else.
Before cancer, he played baseball, took karate, was in boy scouts. We had to quit almost everything because he was too sick to participate. He looks forward to next year when he can go back to the things he loves. He has participated in a clinical study, he had the choice, because he hopes that they will learn something to help another kid.
He has always been such an amazing kid and I only see that getting bigger. He's only asked me once why I thought God gave him cancer and I could only reply, because he has something great planned for you! He must want you to take this experience and help others.
It's been hard but we've done it. We've had a lot of emotional and financial support for our friends and the community. It's been amazing. I lost my job in November, I had to be with him and wouldn't go to work, they held my job as long as possible but couldn't do it any longer. I feel so fortunate to have been able to take care of him while he was ill and really feel like God was sending me a wake up call to tell me I worked too much and needed to be there for my kids more.
Now that Porter is in maintenance we are experiencing all different sorts of emotions. We have to get used to all of the pill dispensing, there are tons of chemo pills to take on a daily basis. So far his numbers have stayed high-and of course we are just waiting for them to crash. He is still on study and got the ARM with the highest dose of chemo, and so far he's still on 100%. We have learned to take life one day at a time and not to sweat the small stuff!
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