April 22 update

It has been a week since Eirik’s third round of chemo.  Honestly, I expected this journey to be a lot more dramatic than it has been.  He has minimal side effects.  Maybe because we are quarantined, we just aren’t having any social drama, but I think we would be skipping it even without quarantine. 

The routine is to go to the local clinic for bloodwork every other Monday (a whole 45 minutes from leaving home to returning), two days later we go to CHaD (Children’s Hospital at Dartmouth) for his infusions (which takes half the day), then every weekend he takes an antibiotic.  That’s it. 

Each time he has gone in for bloodwork, they say that his results are “perfect!”  He has started to hate needles, though.

On May 6 he will go in for another battery of diagnostics so we can see what kind of progress there is.  He will have another pulmonary function test for his lungs, an echocardiogram for his heart (one of the medications can potentially cause heart damage), and the PET scan again.  He can still feel lumps in his neck, so I know it isn’t all gone yet, but things are looking good.

He gets nauseous for the day of chemo, and maybe a little bit the next day, but it is manageable for him even without medications.  I have told him there is no virtue in declining the anti-nausea pills, but he still doesn’t want them.  I’m fine with that.  He just takes a bowl to bed with him, but never actually uses it.

His hair is thinning out.  A stranger wouldn’t be able to tell yet since he has thick hair to begin with.  But when he pulls off the hood from his sweatshirt, there is hair all over it.  We suggested he may want to start wearing a hat to dinner (oh the scandal!) to keep his hair from falling in his food.

I have stopped obsessing about Covid.  It was really killing me emotionally, and since there is nothing more I can do to affect it, there is no point in my following it.  Checking now, I see there are 2.4 million cases worldwide, 1491 in my state, and 1-4 in my town.  I managed to go 3 weeks between my last two grocery shopping days, and am hoping to eke out 4 weeks before the next trip. I am very grateful for my pantry and freezer. 

Otherwise, life is just normal here.  Thank you for being interested in his progress.  We appreciate everyone’s love and concern.

April 3 Update

On Wednesday, Eirik had his second round of chemo. This time Ben took him. I have done all the other appointments so far, and I want him to understand the process, meet the staff who are working with Eirik, and have a chance to directly ask any questions he might have. Apparently when they arrived at the hospital, the door staff didn’t want to let him in because they are not allowing any visitors at this time. He said he didn’t have to argue it once he pointed out that Eirik is only 13. Whew!

Since we are doing remote learning due to school closures, the teachers are organizing time online for virtual classes. Most teachers seem to be collecting each class once a week for video class at this point, though that may likely change since initial three week shutdown is coming to a close and on Monday we enter the extended closure. The significance of this is that when they thought that school would only be out for 3 weeks, they decided not to teach any new stuff to the kids, who are already traumatized by the current crisis, and so they were merely having the students practice the skills they already had learned. Now, though, they are seeing that school will be down for longer (honestly, I don’t see them going back at all this year, certainly not by May 4), and have decided that the students do need new material to learn and work with, so on Monday they will make that shift. So anyway, back to Eirik. He had a class scheduled for Wednesday morning at the same time as he would be at the hospital for chemo. He took his laptop with him so that he could attend class from the hospital.

Ben said that listening to Eirik participate in the virtual classroom and in the social time after class showed him that we need to better facilitate time for Eirik to virtually hang out with his friends. Eirik was very active in class, and I believe Ben said he was a “ringleader”. Knowing how fond the staff at school are of him, I am sure he was a conversation ringleader rather than a mischief ringleader. I’ve decided therefore to give him access to his school Chromebook all day rather than just during school hours. It still has to go away before bedtime, but since we don’t yet allow him to have his own phone, it seems to be the only way right now that he can see his friends.

They left for the visit at 6:45 to get up there by 8:00, and they returned again around 2:15. So now I know how much time to expect to spend at each visit. The first round of chemo was immediately after his surgery, so we were gone the whole day. We did forget to pack a lunch for them, but they were able to find decent food at good prices in the cafeteria. They also ate a second lunch when they got home. Eirik’s appetite has fluctuated between famished and just not hungry at all, and that was a famished day. He had 3 hamburgers for breakfast, and 5 eggs when he got home after having a cheeseburger and candy bar at the hospital. He also didn’t seem to suffer from the nausea as much this time, either. We gave him one pill for it, and it seemed to work this time. Something to be grateful for. I was so sad watching him be so miserable last time for two solid days and nothing I gave him was helping.

I have had to stop looking at the Covid numbers because they are becoming completely overwhelming. Yesterday they topped a million cases, the day that I told my family nearly a week prior that they would. Confirmed cases, I should say, since testing here in the US is completely inadequate. My state reports how many cases are in which towns now (previously they only counted by county), so we can see how close it has been found to us. Those are much smaller numbers right now, with (so far) under 500 cases in the whole state. The last numbers came out yesterday morning and have not been updated for today as of the time I am writing this. I’m sure they will be up there tomorrow. I am learning how to cope with this. My best strategy so far is to not look at the numbers and limit my time on Facebook. I don’t have other social media, so that’s it for me. I can’t be a good (or even mediocre) parent for my kids when I am collapsing from anxiety, and stressing over the numbers won’t change any outcomes for us since we are self-isolating as much as we possibly can. So in this case, I can safely ignore it.