May 17 Update

It has been a few weeks since I last updated here, and I apologize.  Quarantine is starting to get to me, and with the weather warming up, I am trying to spend time outside.  So let’s get everyone caught up on the last two rounds of chemo and the battery of diagnostics.

The 4th round of chemo was harder than the previous ones.  Eirik threw up his breakfast, and one of the nurses took him to go get another one at the cafe just down the hall.  Unfortunately, he lost that one, too, so we didn’t try to feed him again until lunch when we were all done.  Apparently the problem is the taste of saline in his mouth when they flush his port before each medication.  The nurse gave him gum to try to mask the flavor, but it was not wholly successful as it has been in the past.  One of the nausea medications for him is lorazepam (Ativan), so the doctor suggested that he take one on the way up to the next visit.  He also developed a brief rash over his torso when he received the injection in his arm.  That is the one that is supposed to help support his immune system by stimulating the production of white blood cells.  It faded very quickly, probably within 1-2 minutes, right before our eyes.

I told the nurse that I had noticed that their staff always used superlatives when telling me the results of Eirik’s bloodwork each week.  I had been thinking about his immune system, and since our family almost never gets ill (I truly can’t recall the last time anyone had the common cold, flus last only a day or two, and stomach bugs only last 8-12 hours), I wondered how his numbers compared to those of healthy, non-cancer patients.  She told me they primarily track four things (and I don’t remember them all), and of those four, two are in the normal range for a healthy person, one is about one point below normal, and his liver enzymes are just slightly higher than healthy (it is his liver that detoxifies his system from all the chemo).  She was quick to point out that those four numbers are not the entirety of his immune system, so don’t consider him healthy right now, but it was very reassuring to hear that his compromised immune system was so similar to most people’s non-compromised systems.

The following week, we had a series of tests.  We started at oncology to have his port accessed.  This means they took a needle and inserted it into his skin at the port.  The port serves as a giant target for the IV.  To make this as painless as possible, we apply a numbing cream (lidocaine) on the drive up to the hospital.  By the time we arrive, it is numb for him.  From oncology, we went first for the PET scan.  He was injected with the radioactive sugar, and had to lie still for an hour before being scanned.  The scan itself only took maybe 15 minutes, if that.  We then went to his echocardiogram.  He was curious how they would take pictures with his port in place, but they just held it at different angles to get around it.  The last test was his pulmonary function test (PFT), where he had to breathe in and out of a machine, do deep breaths, hold his breath, breathe out hard, etc.  Finally we returned to oncology to be deaccessed (having the access needle removed from the port).  As soon as we walked down the hall to the pediatric unit, he threw up.  He just got a to a trash can in time.  The interesting part is that nothing had happened to him.  He said it was the smell of the department.  I don’t smell anything weird there, but apparently cancer patients have sharper senses of taste and smell.   The doctor suggested two Ativan pills instead of one for the following week’s chemo, along with Zofran, another of the anti-nausea medications.

While we were there, one of the doctors came in and told us that he already had the PET scan results back and could see that there is no more active lymphoma present.  This was wonderful news!  The treatment was working well. 
When they removed the sterile window bandage over his port, his skin turned bright red.  It was much redder than you get when you rip off a bandaid quickly, so they wanted to keep an eye on it, but it didn’t last long.

The next week was the next round of chemo.  He took the extra medications as suggested, and also brought his Chromebook to keep himself occupied.  He hadn’t taken it the last round, and it would not have been a good idea with all the tests.  A few times he asked the nurse when she was going to do XYZ and she had already done it, so I think the medication/distraction combination was successful.  He did not throw up at all this time, though he did spit a couple of times to get rid of the unpleasant saline taste.

Apparently the standard treatment for Hodgkins Lymphoma includes radiation therapy in addition to the chemo.  But in his case, it would most likely damage his thyroid due to the location of the cancer on his neck.  This could be counteracted by putting him thyroid medication for the rest of his life.  Radiation also runs a risk of secondary cancers down the road.  However, since his cancer responded so well to treatment, another option is a few more rounds of chemo instead.  The doctor was very conflicted about what to recommend, and said she is going to take Eirik’s case to the lymphoma board that meets weekly to get more opinions.  As bad as all the radiation sounded, she assured me that it brings the success rate up to 95%, compared to 85% for chemo only treatment.  She told me that of the families that have faced similar situations, the results are split about evenly between those choosing to do radiation and those who choose the extra chemo.  I am very, very strongly leaning to skipping radiation.  The side effects of a damaged thyroid are pretty horrid, and yes, they have thyroid medications to mitigate them, but he would have to be on them for the rest of his life.  He is only 13, and has another 70 good years ahead of him.  Honestly, I don’t trust the pharmaceutical industry to not crumble before that under pressure from peak oil, climate change, and economic stressors.  I kept that last thought to myself as I talked with him about the options.  He said he would prefer to skip the radiation, even though it gives the cancer a 1 in 7 chance of coming back instead of a 1 in 20 chance.  One of my other silent thoughts was why risk trading in a known cancer (the lymphoma) for an unknown (secondary) cancer caused by the radiation?  Especially if the treatments for recurring lymphomas are as excellent as the doctor suggested.  I expect to hear from the oncologist by the end of the week regarding the board’s suggestions.

So that is where Eirik stands as of now.  His next PET scan is in early July, and I can only assume this is to make sure the cancer is staying away and that the last test wasn’t a fluke.  We continue with bi-weekly labwork and chemo visits until at least mid-August, more likely mid-October or early December.