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.