The First Month

Matthew has Leukemia.

I never thought I could be so matter of fact about something that awful and terrifying. My baby boy, at just 3 years old, has cancer.

What can I say? The first month is crazy scary! You know there's something wrong. Everyone knows there's something wrong. His grandparents, his siblings, his teachers. But every mother I've talked to says they went from doctor to doctor, and it always seems to take a month from the first weird symptoms to reach a diagnosis. You desperately want that, but you don't because what if it's something awful? Like cancer?

On the afternoon of June 12th, Matthew got this marble-sized bump on his cheek by his ear, and a bunch of steely sized bumps behind his ear and down his neck. We started with a visit to Urgent Care, but on Sunday, there aren't very many Urgent Care choices. The place we went was kind of scary! The room they put us in literally had a hole in the wall. The doctor, who was maybe 25 years old, diagnosed an infected salivary gland. He prescribed antibiotics and said to give Matthew lots of citrus to get the gland working so it would expel anything that was blocking it.

We went home and gave him orange juice and lemon drops, but by bed time, the bump on his face, and one of the ones behind his ear had more than doubled in size. He also had a fever. We decided to have him sleep in our bed, and by midnight, when the bumps had again doubled in size, we decided he needed to go to the Emergency Room. I took him to Jordan Valley. The doctor there took great care of him, and gave him a high dose of antibiotics and pain medicine. She wanted us to follow up with our Primary Care doctor the next day.

I had surgery that next day to get my gallbladder out, but thankfully it was very early in the morning. By the time Justin got me home, he was able to go fill prescriptions, and take Matthew to the Dr. He said to continue antibiotics and pain medicine when needed.

Ten days later, when the course of antibiotics was done, Matthew had had a fever every day, and the bumps had only decreased in size by about half from the largest size. He was also sleeping an extra 4 - 6 hours a day. So, I took him to Urgent Care again. Only it was Wednesday evening, so thankfully it wasn't the scary one! The doctor there said that he was very concerned. Fevers shouldn't go on this long, and the infection should have cleared out by now. He gave Matthew a nasty shot of really strong antibiotics in his thigh, and said that if it wasn't significantly better by Friday, we should call our Primary Care doctor to set up an appointment with a pediatric Ear, Nose, and Throat doctor. He also wrote a prescription for much stronger antibiotics. So, we went home and by Friday, the bumps were very small - the size of a steely.

So, we waited. We kept giving him antibiotics for another 10 days. The bumps never went away, and although the fevers did, they came back every night. During this time, we finally sent him back to daycare. His teachers there said that he was happy to be with the other kids, but he would lay down to rest after about an hour of playing. Plus he initiated his own nap time early each day.

At the end of another 10 day course of antibiotics (20 days now) we called the Primary Care Doctor, and he set up an appointment with an Ear, Nose and Throat doctor for July 1st, which was a Friday. This doctor was very well known, and his office was decorated with awards. He felt the bumps for a minute, and named about ten diseases that could cause this. The only ones I remember are Tuberculosis, Cat Scratch Fever, some sort of tumor, or Lymphoma. That was the first time I thought it could be cancer, but I pushed it out of my head. This doctor wanted Matthew to be seen at Primary Children's, so he called a specialist there and set up an appointment, but he didn't have an 0pening until July 18th. Matthew had already been sick for so long, and I was worried. I told the doctor I was concerned about the weight loss (at this point, I would guess he had lost around 5-10 lbs.) and his complete lack of appetite, and really concerned about the fevers. He told me the next time a fever broke 102 degrees, I should take him to the Primary Children's Emergency Room.

So, we waited more. Prior to this appointment, the fevers had been 102 - 105 every evening. So, we figured we'd be going that night, but from that day on, the fevers hovered around 100 - 101. It took until Tuesday July 12th, at 3:30 in the morning for a fever to go high enough again. 103.8. We rushed to the E.R., hoping to get there before the fever went down too far, in fear of being sent home with no answers.

It turns out there were other much worse fears confirmed that day. The last week or so before we went to Primary's, we had both researched Lymphoma, and we both felt very sure that's what they were going to tell us. We were a mess. What's worse, we hadn't really talked to each other about it, for fear of worrying each other.

The E.R. doctor said that a month of fevers is not normal, and can only be a symptom of some very serious conditions. He wanted to check Matthew's blood. The blood didn't give him an answer - just more questions, but it was enough to admit Matthew to the hospital. He told us at that point that he suspected Matthew had Leukemia, because of the serious lack of white blood cells in Matthew's body.

We were admitted that morning to the ICS (Immunocompromised System), which is where they treat all the cancer patients. We cried a lot. We saw a bald child across the hall, and cried even harder. They kept coming back to draw blood. I felt like they were taking a precious resource because he already had so little of it. They tested for a gazillion things, hoping it was a serious virus, and not cancer. They tested for two days, with no answers, and no one could see cancer cells in his blood. So, they finally asked us to let them do a bone marrow aspiration, which is a procedure where they put him under anesthesia and drew liquid from his bone marrow in order to determine for sure whether it was Leukemia or not. This was done on Wednesday morning, and by Wednesday afternoon, we had an answer. It was definitely Leukemia. They didn't know the details, like the type of Leukemia, or the classifications associated with it, but they wanted to start Chemo the next day.

What a whirlwind!! It was overwhelming and scary in a way that no one could possibly understand without going through it. We went from having panic attacks to feeling numb to survival mode, and back to the beginning over and over again.

The people we bought our house from had a daughter who had cancer as a toddler. I remember my heart aching for them, and feeling like I could never possibly be strong enough to endure a trial like that. Funny how the Lord teaches us about our own strengths and weaknesses.

After all the tests were finally complete, they gave us all the details about Matthew's Leukemia. Leukemia doesn't have stages like other cancers, because in other cancers that's how you identify how much of the body it has affected. Leukemia affects the entire body because it's in the blood, so staging doesn't work. Instead they classify the characteristics of it.

Matthew's diagnosis has a long name. Standard Resistance Acute Lymphoblastic Leukemia with Precursor B, but usually it's more abbreviated: SR ALL Precursor B. Typically, people would just call it ALL. Those words make it sound scary, but actually if you have to have Leukemia, this is the one you would choose. Standard Resistance means he should have a typical response to the classic treatments, and Precursor B means his B cells are infected, rather than his T cells. I'm not sure why that's good, but it is. He will have 28 days of induction therapy (today is day 9). This is where they induce remission. It's harsh, and rough, but necessary. After induction comes 6-9 months of intensive chemotherapy. After that, it's maintenance therapy, which I believe is only one treatment a month. The three phases will last a total of 3 years, 3 months if there are no delays, which means Matthew will finish his treatment roughly the month of his seventh birthday.

I realize this has been really long for a blog entry, but there are a lot of people asking how we figured it out. So, here we have it. Plus, I want to document this for Matthew. Someday, I hope he will be able to look back on this and know it made him the strong man that I know he will become.