My life changed this week. On Monday, we took my seven-year-old son to the doctor for a follow up on a biopsy of a swollen lymph node in his neck. It turned out to be positive for cancer. The ear, nose, and throat specialist said that oncology was not his field so he would turn the case over to an oncologist and that we would get a call soon.
We were surprised at how soon. The doctor we visited was an hour away from home, so we had gone to a bookstore to let the kids play and get some food and try to absorb the news before heading back home. We had been there only half an hour when I got a call on my cell phone. The oncologist told us to bring him to the hospital immediately.
That was Monday. By Wednesday, he had started chemotherapy and they had laid out a two-and-a-half year plan for treatment.
Most of my time has been occupied with figuring out logistics. My ADHD had already been on full blast for most of this year, with medication not right and other unusual stressors in play, so my job and finances and personal affairs were already in the hole. I’ve had little time to reflect, having spent most of this week in the hospital an hour away from home. I took to packing a large suitcase full of mail and trying to find time to work when my son is sleeping or occupied.
Some of my work is easier now; things that usually stress me out pale in comparison to this new life we have. It will still be challenging. This time of year is working out okay; the semester is winding down, most of my classes are online, so I do not have to put in much time on campus.
The first two days were the hardest; we did not know the extent of his cancer. I found odd times to grieve, passing his empty room at night, watching a Disney movie in a waiting room. Driving back to the hospital, I had to avoid all music to be able to keep it together. Even a cheesy 80’s hair band ballad on the radio threatened my stability. (Yes, Poison, I do need somethin’ to believe in.)
But we got good news yesterday. The cancer is limited to his lymphatic system, and is not in his bone marrow or central nervous system. Children respond much better to chemo than adults because their systems are healthier and more resilient. Given his profile, he has up to 95% cure rate without relapse and close to 100% survival rate.
Still, it will be a long treatment, more than two years. He will have side effects, like losing his hair. In his favor, one main side effect will be weight gain (he’s always been underweight). Hard for us will be mood swings due to the steroids he will be taking.
He’s already responding well to treatment. All the lymph nodes in his neck were swollen as were his tonsils, which had changed his voice and made it hard for him to sleep. It’s been less than 24 hours since he started chemo, and his voice is back and the swelling is going away.
The hardest time I had was seeing him suffer through the procedures. We’re at an excellent children’s hospital, and they do everything to make things comfortable and not too scary for him. Still, he had four different I.V.s and blood drawn. He had a triple procedure on the second day: bone biopsy, lumbar puncture, and he had a port installed. When I saw him come out of that, he had some dried blood on his face, and his skin was stained with antiseptic and blue dye. Because of his swelling, he struggled with his breath for a few minutes while I was there. That will keep me up at night.
Now that he has the port (a central line) installed in his chest, intravenous meds and blood drawing are totally painless and the wrist and arm I.V.s are gone. He’s much happier with that. They came in during the night to run I.V. meds and draw blood, and because of the port, he didn’t even wake up. His breathing is better, and he’s starting to eat. He had some pain the first day after the triple, but is not in pain today.
If there’s anything to be grateful about its that we caught it early, we’re treating it fast, we’re at an excellent children’s hospital with great care, and we have very good insurance. In fact the social worker today said our insurance is about the only one she’s seen that doesn’t necessitate the parents buying supplemental insurance.
I will continue to blog about my own perspective here, but have started a different blog to provide updates to family and friends at http://alecsprogress.wordpress.com/