2 year anniversary.

About 2 years ago, my youngest son had his last chemo treatment. He had his last dose of toxic chemicals sent through the catheter inserted into the largest vein they could find in his chest. He had his last dose of steroids and methotrexate mixed with yogurt. He had his last bone marrow biopsy. He had his last lumbar puncture. He had his last surgery- to remove the port implanted under his skin that they used to give him his chemo. In June we had a party for him, a combination "No More Chemo" and 6th birthday party.



A couple weeks before Christmas, 2000, Husbandguy and I thought our 2 1/2 year old had the flu. A bad case of the flu, but something that he would weather with enough pedialyte and snuggling.

We were wrong.

I went to get him up one thursday morning and my baby was so pale, his lips and tounge were about white. He didn't register me. He didn't cry. We took him to the ER, they inserted a tube down his throat, they drew blood that looked like dirty orange water. They didn't know what was wrong with him, and we took an ambulance ride to the Cleveland Clinic, where they put him in the PICU- pediatric intensive care unit. My toddler was hooked up to machines, with tubes coming out of him, he still didn't respond to anyone, and they didn't know what was wrong with him. It could have been a virus, it could have been diabetes (which his grandfather has) it could have been a lot of things. There were no blasts (cells that indicate cancer) in his bloodwork. The blasts were in his bone marrow. He was diagnosed with Acute Lymphoblastic Leukemia, also known as ALL. As soon as he was stable enough, they inserted a Broviac Catheter in his tiny chest, and started his chemo. He was in the hospital for over a month. Christmas, New Years, both spent at the hospital, in shifts, because while one of us stayed with him, the other parent had to stay with our other boys- midkid, who was almost 5 and the doomed one, who was 12 at the time.

After the first infusion, the cancer was gone... however, with leukemia, chemo treatments must continue for 2 1/2 years for boys. (1 1/2 to 2 years for girls. at least the protocol used at the Clinic prescribed this.) This is because you can't just cut out the cancerous part.. it's in the bone marrow, and they don't know which section of marrow it is starting in. Bone marrow replacement is a last resort. So, when babyguy finally came home, he was still not "all better" and I had to clean his broviac site every day, and give him meds twice a day. We mixed the meds with chocolate syrup and used a syringe to squirt the nasty stuff in his mouth. What we didn't know then, but found out later, was that when the leukemia first started, it weakened the blood vessels in his eyes, so that they leaked blood that formed clots inside his eyes. So not only was he getting chemo through a tube in his chest, and more chemo in nasty meds he had to take, and yet MORE chemo in shots in his thigh muscles, and bone marrow biopsies, and needles stuck in his spine (the last two of which he was under general anesthesia for, thank the Gods) he couldn't see. So after he had 'recovered' from his first infusion/major round of chemo, he had eye surgery, on both eyes.

Right before this, we had initiated potty training and weaning him off his pacifier. For obvious reasons, both these projects were put on hold.

I spent mother's day that year in the hospital with him, removing his hair, which was falling out in clumps.



And yet.. he was still a normal kid, a bald kid, but still a kid. He started talking when he was still too sick to get off the couch, and he kept talking after he got better, a mile a minute. He ran around like a little maniac, and the standing joke at the clinic was "Have you seen a little bald kid running around?" "You'll have to be more specific." The clinic staff became almost a second family. We saw them 3 times a week at first, then once a week, then every couple of weeks. A good period was once a month. On my first visit, a mother asked me about my son, and said "we're here for his annual blood check. My son's been cancer free for 10 years. It gets better, it really does."



For his third birthday, we had a party. He got a hat, which he loved. He was like any other little 3 year old, except for the tube coming out of his chest. The meds? part of regular life. Bi-weekly checkups? part of regular life. Changing the dressing on his broviac? part of regular life. Shampoo sessions? not so much. Eventually, his skin started reacting badly to the tape used on his dressing, and we had to come up with alternate methods to keep his dressing on. For a while, we used mesh bandages to hold it in place. It was during this period, that I went to visit a friend in Wisconsin, and Husbandguy let Babyguy play at washing dishes. He took pictures. We have a picture of a little bald toddler, wearing only a diaper and bandages around his chest, washing dishes. Child Labor? Boo-Yah! Hey, China has NOTHING on us.



Every time he spiked a fever, he had to be hospitalized for a minimum of 3 days. We spent a lot of time in the hospital that first year. At one point, he had to stay three weeks, but he wasn't sick. So we had a lot of cabin fever. There was a huge fish tank at the end of the hall on the pediatric ward.. we spent a lot of time going to see the fishies. There was a tv in the room, and we watched a lot of Batman Beyond andLittle Bear and Ranma 1/2. The fun part about Ranma is that it's Anime. An anime about a boy who turns into a girl when cold water is splashed on him. At which point he (she?) pulls his (her?) shirt apart to stare in disbelief at his (her?)breasts. Or someone else does. Humor. Some of the hospital staff were like "huh? wah?" and others liked it enough that they would stay and watch untill they had to get back to work. I got a lot of questions.. "Why did that guy turn into a piglet?" "Why did that man turn into a panda?" hee. I had a three year old who knew what "Ranma no baka" meant. double hee.



The thing is, all of it was just life. You get into a routine where "oh hey, time to spend a week in the hospital" is no big deal. Taking your preschooler to the surgical unit so he can be put under general anesthesia while they poke needles into his hip bone and spine is no big deal. You know exactly what to pack to eat, you know to wake him up at midnight to feed him some crackers and water because 'nothing by mouth' for at least 8 hours before surgery is the rule, you have a special backpack and lunchbox that is just for clinic days, packed with toys, crayons, paper, and books. You get to know Dora the Explorer, Little Bear and other Nick jr. characters better than you knew your first boyfriend. On days when Babyguy wasn't allowed to eat anything, I never ate anything either and then we would eat together, in the recovery room, a little picnic on the hospital bed with the hospital tv playing Nick jr and the staff coming in and taking blood pressure, temp and whatever. He got to the point where they would come in and say "time for vitals" and he would hold his arm out to put the blood pressure cuff on, then hold his arm up so they could put the thermometer under his arm. Automatically, no fussing, no crying.. this was just a part of regular life.



The summer of 2002, they replaced his broviac with a port imbedded under his skin. this meant no more dressing changes, no more tape that hurt his skin, he could swim, get wet, do anything any other kid his age could do. He could play in the bath. His hair was growing back, he was a regular kid... except for the monthly Clinic visits for his maintenence chemo. And the chemo he still had to take every day. And the steroids he still had to take once a month for a week. And the LP's every three months. The staff at the surgical center knew us by name, he had a chart that was thicker than an unabridged large print dictionary. But the best thing about the port? No more hospital time.

Which brings me to March, 2004. By this time Babyguy had had 2 surgeries to implant broviac tubes, surgery to remove his first broviac, surgery to implant his port, eye surgery and a hernia surgery. Not to mention all the times he was put under for biopsies and lp's. He'd had gallons of blood drawn and received tons of meds. So we went in for the last surgery, to remove the port. The Party came a little later.



We still had to go to the clinic once a month for a year- that didn't change, except that now we put the Emla cream (numbing cream) on his arm instead of over his port. He had blood draws every month for a year. Last year, this switched to every 3 months. This year, every 6 months.. for the first time in 5 years, I couldn't make my next clinic appointment because they didn't schedule that far in advance. This may not mean anything to most people, but it meant a hell of a lot to me. Starting next March, we'll go in once a year. Just a blood draw, nothing major. I still get antsy when he's sick. I still worry that the leukemia will come back. He's been cancer free for 5 years now, but sometimes it comes back when they are teenagers. Everytime, his blood counts are normal. Normal. This is one instance where I love normal.

I want to live in a world where the word "pediatric" is NEVER coupled with the word "oncology."

so, anyway, really long post this time. I just never sat down and wrote about this stuff before. Husbandguy is the writer in our family, not me.

Happy anniversary, Babyguy.