Cancer Dad

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/

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20 thoughts on “Cancer Dad

  1. Wow. I don’t know if you do prayer, I’ll pray for your son and you. If not, count it as my best effort at wishing you guys all the luck and strength you need.

  2. My thoughts and prayers are with you and your family. Our daughter has a rare blood disorder, but thankfully it has remained stable enough for her to maintain a mostly normal life. I cannot even begin to imagine what you are all going through. Best wishes.

  3. Oh Jon, I can’t tell you how sorry I am…what a tough time you have ahead. I have fallen off the net wagon since starting my 1st time job in many a year. Shall we both publicly confide, ADD is oh so SuckOramA? My thoughts and prayers are with you, and I already appreciate your candor. Peace, Kate

    Sent from my iPhone

      • I don’t remember who Dr Holloway is Jon…but respectfully appreciate and assume that he is great about pointiing out our wonderful and unique place on the planet..and between you and me and the hospital post…whatevs…I reached that appreciation years ago. It’s looking down the barrell of the next 40 that are at times diScomboBulating. Yes? You are looking down the barrel of one hour at a time right now though, so I’ll take on the long term angst shift for now. Just wanted you to know that while I have no way of understanding how it feels to stand in your shoes this week – I can empathise with the added juggling act of keeping your not fake disorder at bay. I am glad that I noticed your post title…I’ve been putting off catching up on blogs and blogging until summer break. I will keep tuned into you and your family journey. pax, K

  4. This is bad news, but as you say, could be a lot worse. You probably don’t know, but my dad had a very bad cancer diagnosis in January. Similar to your family’s story, it was caught early and hadn’t spread. He’s doing well now and maybe things are OK. I’ll keep your family in my thoughts. As I said in a FaceBook post, when “worst” is an option, “bad” is pretty OK. Good luck.

  5. Life just keeps coming at us, but when it has to do with our kids, it’s the toughest challenge. No one really knows what someone else goes through, but as a mom my reaction is a lot like being kicked in the stomach. Thanks so much for sharing this and much good wishes and strength to your little guy.So glad you caught it early and he has great treatment.

  6. Pingback: Gratitude Friday Five | Attention Deficit Whatever

  7. johnathon
    i just found your blog for the first time, and was very moved. i have been thru some of this and have some idea what it’s like – awful. i hope things have gone well since your last post. you and your wife and son are in my prayers.
    doug

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