July 9

We have started round 5 of 6. Last week we had more diagnostic tests – a CT scan of his chest and neck, a pulmonary function test, and an echocardiogram. I learned yesterday that his heart looks fine. There is some residual calcification in his neck lymph nodes, which they said is fine as long as they don’t get bigger again. Apparently also his lungs have some minor obstruction, similar to an asthma patient, they said. But this has also been consistent throughout the process. They only just told me about it yesterday.

Nausea is getting worse for him. For the first few cycles, he was not having any symptoms at home. The last cycle, though, he started taking a nap when we got home. Last night I heard him throwing up, and he threw up again today. I asked him if this is the first non-chemo day when he has thrown up, and he said, “No.” He slept for about 20 hours after we got home yesterday. He was up for a short while after we got home, then he went to take a nap. He did not get up for supper. This morning he got up, came downstairs and promptly went back to sleep on the couch. I sent him back to bed to sleep and he finally got up about 1:00. He had no breakfast yesterday, he was not hungry for lunch, but he humored me and ate a snack pack of peanuts. He missed supper last night, and breakfast this morning.

I am so glad we are almost done. Only three more rounds (six weeks) left, and then his body can start getting back to normal.

June 8 update

First, I want to apologize for leaving everyone on a cliff-hanger last time. At the most recent chemo visit, the doctor had some great news for us. She had consulted with the lymphoma board and they all agreed that he was doing so well that he could skip both the radiation and the extra chemo. That means we are now halfway through the treatment, and (barring unfavorable blood tests that results in waiting an extra week) he will be all done with chemo before school starts in the fall.

This last time, lab results were borderline. They said the numbers were strong enough to continue the cycle he was on, but if he was starting a new cycle, they would have waited another week so his body could strengthen up some more. They said his bone marrow is getting tired. I’m not surprised, it has been working overtime for three months now. I’m trying to feed him more bone broth to support his marrow. Chicken noodle soup seems to be a lunchtime winner.

We seem to have gotten a handle on his nausea. It seems to be entirely related to the administration of the chemo, rather than the presence of the chemo in his body. A large part is from anxiety, but a significant part is also from flushing his line. Every time they administer a drug through his port, they have to do a blood draw (to make sure the line is clear and flowing properly) and then flush the line with saline. He can taste the flushing. The saline creates an unpleasant taste in his mouth, and then his focusing on it escalates it to nausea. So we start with skipping breakfast, then taking an anti-anxiety pill (Ativan/lorazepam) on the way to the hospital, along with an anti-nausea pill (Zofran/ondansetron). Once we are there, we get him distracted with his Chromebook and he watches YouTube videos of people playing Roblox (his favorite game platform). With the videos distracting him from the taste in his mouth, he only has to spit to get rid of the unpleasant flavor.

So here we stand at the halfway mark. Once his chemo is done, they said that they will continue to see him every three months to monitor his progress for a year, then every six months after that.

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.

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.

March 28 update

It has been a week since the last update, but there isn't much to report.  Eirik’s nausea seems to have eased up after the first few days.  He is enjoying life as normal, or as normal as is possible in lockdown.  He’s keeping up on his schooling, he’s going outside for some sunshine every day (a requirement if he wants to play on the computer), he’s playing games with his sisters.

On Monday he goes in for labwork to make sure his blood counts are satisfactory before more chemo on Wednesday.  He has to take antibiotics every weekend, and the pills are very large.  I have to cut them in half for him to be able to swallow them.  All in all, there isn’t much to report. I’ll check in again next week.

March 20 update

We have now had an opportunity to tell all of the closest friends and family about Eirik’s condition, so I am now going public with this story. If this is your first time hearing of this, I began the story here.

Yesterday I took Eirik to the hospital to have a port installed. If you don’t know, a port is like a permanent IV. He will need IV infusions every two weeks, and instead of sticking a needle in him every other week, they just surgically installed one directly into an artery in his chest. This gives them a much bigger target to hit with the needle rather than the comparatively tiny veins in his elbows, and thus will make it much easier and less painful for him.

What a difference two and a half weeks has made in the surgery wing. There were no students, no other patients. Eirik wanted more people to joke around with, but access to the surgery wing has been greatly restricted. I was only allowed to go with him because of his age. He was joking around with the few people who were there, and I was very glad to see that Greg would be his attending nurse again. The procedure was pretty quick, and I spent the time reading the 75+ page binder I was given titled “Pediatric Oncology Family Handbook”. Not exactly riveting material, but valuable information. When I was called back afterwards, Eirik was still sleeping. When he did wake, he was groggy for quite a while, and not his jovial self. I was a bit concerned about his ability to walk, but the standard seems to be to put him in a wheelchair for discharge. Fortunately, the halls at DHMC are quite wide, because he insisted on wheeling himself for much of the distance from Same Day Surgery to Oncology, which are at opposite ends of the building, and on different floors. He tended to veer to the left, which is easily explained by the fact that he is right handed. I told him how to steer by turning only the wheel on the side away from where he wanted to go. By the time we got ¾ down the hall, his arms were tired, so he let me push him the rest of the way.

The Pediatric Oncology Unit is a fun place. It is brightly decorated, and has lots of things to entertain the kids. We started with eating the lunch I had packed since it was 11:30 and we hadn’t eaten at all yet. Eirik found the gaming system and I had to tell him to wait on games until after he ate. I met with various doctors and nurses who gave me information overload again while he played. We got a tour of the unit, and Eirik paid particular attention to where he might find snacks and drinks, as well as video games. I talked over lots of alternative therapies with the doctor and noted which ones might be appropriate, and which we should avoid. Many of the therapies I had listed are for adult cancers, which apparently behave differently from childhood cancers. We also sorted out ones for solid tumor cancers vs. blood cancers. Many of the alternative therapies were eliminated because they weren’t applicable.

Eirik received over half a dozen infusions while we were there. They started with a saline flush to get things ready and make sure the port was working properly. The first drug was an anti-nausea medication, since nausea is a major side effect of the chemical cocktail (called ABVD), and then a heart protector, since the next medicine is known to damage the heart. Then there were four different infusions, followed by a saline flush, and then heparin to help prevent clotting in the port. These took probably an hour or more in total. Finally, he was given a shot to help stimulate his bone marrow to generate white blood cells to support his rapidly weakening immune system.

We were finally ready to head home about 6:00. At dinner I found and peeled 3 EKG sticky leads off of his body, which reminded Ben of The Matrix, so we watched that after dinner. Eirik struggled with nausea throughout the movie, and none of the three medications we were given for him seemed to help. He did not throw up, but he did hug a bowl the whole time.

As we were leaving the hospital, I received a text from Lauren saying that someone at her workplace had contact with a known Covid case. She didn’t know who, nor what department, nor what shift, so we don’t really know how much to worry about it. Total NH cases were up to 44 yesterday. Today as I type this, they are up to 55. And Ben just told me that as of 28 minutes ago, NHPR reported 65 cases. Driving up to CHaD feels a bit apocalyptic, with big flashing signs on the side of the interstate declaring “COVID 19 MORE INFO AT HEALTHVERMONT.GOV”. They are particularly eerie in the predawn.

Eirik’s immune system is expected to fall over the next 7-10 days, but the nurse said he should be fine for one last visit with friends today, so we made our last public appearance. On the way home, he struggled with nausea, which is unsurprising given the quality of roads around here right now. We will officially go into our own quarantine tomorrow, with only work, babysitting, and one weekly grocery shopping as the exceptions. Things are tense here, tempers are short, and I hope I have the strength to not snap. My husband has been having a hard time keeping himself together at work. He doesn’t want the news to run rampant through the rumor mill, but he hasn’t found a good time to tell his friends there yet. He is feeling very protective and helpless at the same time. I suggested that he take Eirik for his next round in two weeks so that he can meet the staff and get first hand information (since I’m sure I forgot over half of what they told me) and ask any questions that he may have.

Our new normal looks like it will include biweekly hospital visits and biweekly labwork (which can be done at his PCP’s office). I am so glad that it is only an hour’s drive each way. It is close enough to not be a hardship and we can go whenever we need to, but also far enough away that it makes sense to combine things as much as possible. So that is it for now, I think.