From California to NC- Ocrevus, Elezanumab, Clinical Trials, Homeschooling, and a freaking long distance relationship with my Husband?!?

My four year old crawled in bed with me this morning. I’ve been keeping a late schedule since we traveled across the country and relocated in North Carolina. However, it’s hard to fall back asleep without my husband in my bed. So, I thought to write a post I’d been keeping in the back of my mind.

In the first week of July our kids former school, a private school, sent out reminders that it was time to pay the first months tuition. I went into a panic, realizing this is July, our kids will be starting school soon, but how can I send them to school when they could bring an infection back that could disintegrate my ability to take care of my family. The COVID 19 infection was going strong in California, numbers were not dropping, and I felt no more protected than I had months ago. I hadn’t gotten my Ocrevus infusion yet, but I was scheduled for it in two weeks. That infusion would take my CD20 antibody count down. People have been faring aliright, with MS and Covid19 for the most part, but its a big unknown. I opened up my laptop and wrote my kids school a heartfelt letter. The school was planning on reopening and doing face to face learning. I couldn’t take the risk.

I’ve been without the assistance of my in laws who I relied on so much to help with our kid, but not for lack of them wanting to help. Every weekend before the coronavirus hit, my wonderful in-laws would take the kids for usually the whole weekend. My kids would have an adventure with their grandparents, and I would have time to rest, recharge, go out to dinner with my husband or cook a meal together at home. I would reboot and start the week over. This was how I survived.

My husband came to me in March, at the beginning of the infections and told me that the kids wouldn’t be going back to school. The state was going on lock-down. I had known the reality, but I hadn’t grasped how I would be able to cope. I was surviving because my daughter was in school for six hours a day. My son went to preschool full time for two days a week. During those days I meditated, worked on projects, folded clothes, and had precious time to take a break from my duties as a mom.

I opened my laptop and wrote a letter to the school, about how I appreciated them so much, but my kids couldn’t return to school in the fall, at this time. What were we going to do? I barely survived the distance learning. I concentrated on my daughter at the time, and her grades had maintained and improved with the one on one time with Mom. However, my son I just had to keep busy. Having MS, makes it hard for me to do more than one thing at a time. With two kids, at two grade levels it was a struggle.

At the same time my in laws work in 29 palms in the hospitality industry, and have contact with guests, though the abide by social distancing guidelines. During my June teledoc appointment with my neurologist, she told me if I wasn’t able to cope with the kids at home, if my health did begin to suffer, as I had feared, and I sent my kids to my grandparents, I would have to do so not knowing when they would get to come back home. She was meaning, that I wouldn’t be able to be reunited with them until the Covid19 situation improved.

This summer was racked by guilt. I felt I wasn’t doing enough for my kids and letting them watch ipads way too much. I felt bad that they couldn’t go to their grandparents because of the possible risk to my health. They missed each other badly. I broke down in tears after I emailed the school. I was so tired. I was a nervous wreak because I felt myself sliding downhill since I was one month late on my ocrevus infusion and was experiencing the Crap Gap (the term Ocrevus patients have created to describe the less energy they feel the month or two preceding their infusion.)

My husband and I came up with a plan. He was helping me all he could, but he works full time to support our family. He was doing that work from home, in our garage, trying to make multi million hotel deals happen, while the kids ran around the house and made noise as I tried to keep up.

My parents live in North Carolina, across the country from California. Air travel was a risk. My mother is semi retired, my Dad has one semester left of classes, which he is teaching solely online, not in person, and my brother is living with them. I would my kids Nani, Nana, and Jonny mama to help me. (These are the terms for grandparents and uncle on the mother’s side in the hindi language.) I would have the help I so desperately needed with my parents and brother who could self quarantine with me.

The plan was to go across the country to so I could have help homeschooling the children, not distance learning, which was a frustrating experience. But how would we get there?

My husband suggested I start looking for travel trailers. If we drove across the country, hauling a trailer with our Yukon Denali, we wouldn’t have to use public toilets. We wouldn’t have to stay in hotels. We would minimize our risks of infection.

I hopped onto RV share, and my husband, who also has his used car dealer license monitored the car auctions, now exclusively online due to Covid restrictions, for a trailer. I began packing slowly. I got my Ocrevus infusion. I received my last dose of elezanumab and in August I had my in person neurologist evaluation to close the active 12 month portion of the infusions of the elezanumab trial. I notified my clincial trial team, who told me I could do the last appointments from a distance. We had a plan in place.

Still, with the day to day nature of my husband’s business, we needed to bide our time and wait for a break in his work so he could afford to take the two weeks to drive us to North Carolina, and then return to California. The plan was in place, the lull came, I found a trailer by sending out requests for trailers, and a great guy named Zac agreed to rent us his 2014 Forest River RV, Salem Cruise Line trailer.

We prepped, I packed like mad, and we hit the road.

To be continued….

This is a two- part blog post. I’m trying to get myself on a regular posting schedule, and a to be continued is a perfect way to make myself do just. I am taking the time to write the post this week. Thank you to my subscribers who are hanging in there and keep coming back. Thank you everyone for encouraging my writing. Please comment below and tell me how you are coping during this pandemic. God be with you till we meet again. Stay safe!

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