{SQT} The Quarantine Edition

1. Please add to your prayer calendar: Thomas's tumor removal surgery is scheduled for November 18!

2. I have taken to writing these blog posts chronologically, but if you want to skip ahead in importance, scroll to the bottom where Thomas went to the hospital.

 1. Quarantine

Thomas and I arrived home Friday night from 40 hours of infusion feeling triumphant and ready to collapse from fatigue. However, when I noticed David was inconsolably fussy and hot, I discovered he had a 102.6 fever and knew I would not be getting to relax. We quarantined him to the master bedroom immediately and took him the next morning to Urgent Care in hopes of identifying his illness. It turns out that David had developed a common cold sore, which is caused by the HSV1 virus, which studies show that 60-85% of people in the world possess by adulthood (not the same as HSV2). The period between contracting the virus and symptoms expressing themselves can be as long as 20 days, so, even though David virtually never leaves the house, we can't know where he picked it up. It is not transmitted through the air so much as from directly kissing or sharing drinks or utensils or possibly even from touching surfaces.

Most people get cold sores periodically and it's no big deal, but the first time a child catches this virus--and most people caught it as children--it comes with fever, aches, and malaise, as David had. Unfortunately, if a cancer patient experiencing neutropenia catches this virus, it can bring with it great complications. Both the Urgent Care doctor and the oncologist said that David should stay quarantined in a bedroom for one week.

I find viruses really interesting and appreciated these articles describing this fascinating family of eight RNA viruses that stay forever in one's body inside nerve cells called the ganglion. The virus may stay in quiescence forever or it may "reactivate" due to certain bodily conditions.

• Cold Sores (HSV-1): Johns Hopkins
• Cold Sore: Mayo Clinic
• Herpes viruses: Cancer Therapy Adviser

Dad took quarantine duty over the weekend, but then I had to take over during most of the work week, which meant the household routine was lacking, school was partial, and our family felt fractured because we couldn't even all eat together as a family.

It was a really emotional week, and not in the good sense.

2. The Triple Feast Days

Saturday: All Hallow's Eve

On Saturday morning, my husband made a comment about how we didn't have any plans for Halloween or even any candy. I said au contraire: how long have we been married? I knew I would be at chemo for the week prior, so two weeks prior I had planned our Halloween (Plans A, B, and C, depending on circumstances) and I bought the candy and hid it in the house.

I had the children decorate trick-or-treating bags and was particularly impressed with Thomas at only five years old drawing a horse with a cowboy riding atop.

Cancer means that we were about to do our in-home trick-or-treating festivities when I realized that I had lost track of time and really needed to give Thomas his medications right then. That meant two pills, one extremely nasty liquid medication, and an injection. My heart hurt that I had to stop our little cowboy amidst the hustle and bustle of dressing in costumes to give him medication he does not want. But that's cancer. He was a trooper.

Our 13-year-old was invited to a Catholic celebration of All Hallow's Eve which involved a meditation on purgatory and hell, the recitation of the rosary, and loads of wholesome teenage fun. He loved it.

Introducing a pirate, a cowboy, a princess, and St. Therese of Lisieux!

David was in quarantine, so I invented a "backwards trick or treating" for him. He had his brown paper sack and one by one, the family members--not Thomas!--knocked on his bedroom door. He would open the door and say some three-year-old's variation of "Trick or Treat!" The sibling would put a piece of candy in his bag, so he was not digging through the candy basket, and they would depart without touching David.

I had drawn maps and then labeled ten rooms of the home with numbers (1, 2, 3 . . .) so Thomas could follow them in the right order. Three siblings were the "homeowners" who opened each door when Thomas knocked and exclaimed, "Trick or treat!" Then the "homeowner" would dash to the next door to which he was assigned, getting there before Thomas arrived. It was so cute and zany and Thomas really did feel satisfied with the fun.

Thomas showing off his 15 or so pieces of candy: "Look, Mama, I have so much candy!" 

Sunday: Feast of All Saints

Thomas had already been complaining of headache as of Saturday (cycle day #6), which tells me his hemoblogin is plummeting, and he woke up very early Sunday with pain through his legs and arms, which tells me he is experiencing the notorious pain from his Neulasta shot (not anywhere as painful as adults experience, thankfully).

While taking his vile Septra medication (4x every weekend), he asked me to play Candyland with him: "Every time I take a sip, I get to move my piece!"

David was understandably struggling with his quarantine. His fever had broken after 24 hours, so he felt pretty great except for the painful cold sore, but he was still contagious to Thomas. Daddy turned the lock around on the bedroom door so he and David could be locked in instead of escaping into the hallway every time his dad sat down in a chair.

Chris came up with a wonderful idea to whisk David out to the car and drive him through Zootastic. They would stay in the car, nobody would get out even to purchase the tickets, but they would have a good change of scenery.

A dear friend had dropped off to me a ready-to-go All Saints party kit for at home: what a sweet act of charity! Chris gathered the children for the Mass readings of the day and a talk on the feast day, and then he went back to sit with David while I led the children in some games. Regrettably, nerves were frayed and all was not 'Catholic idyllic' as I'd hoped . . . I'll just put it at that.

I ended the evening in tears alone wondering how I will pass on the faith to these little souls when we are so uninvolved with our community right now (due to cancer and keeping isolated from contagions).

Monday: Feast of All Souls

Thomas vomited (still!), had headaches, and bone pain (started him on loratadine for the pain).

I had an ice pick headache all day.

School was a BOMB (as in bad, not da bomb).

David was going nutso in quarantine. One of us took him outside to play alone (with a parent) for a couple of long stretches.

I managed NOTHING for the Feast of All Souls. 

I. Can't. Do. This.

I went to bed in tears again.

Hummingbird nest found in our yard!

Hummingbird nest found in our yard!

3. Tuesday

It has happened: since summer, our oldest son has grown taller than his mother! What a wonderful milestone for a boy!

Outdoors for a quarantine lunch with Mama

Thomas spent the day dressing up!

Our older kids stayed up with us till about midnight watching election results roll in. I thought Thomas was not old enough to be aware of anything, yet he came to me with his own personally drawn election map. I loved it, but still tucked him in at 7:00.

Election map drawn by Thomas (5)

Election talk has continued obsessively among us all for the rest of the week.

4. Wednesday

Wednesday was clinic day and the first day that Thomas ended up receiving a blood transfusion. It went well and we were done five hours later, which is faster than anticipated. Thomas will remember the day as the day he got to go to "that big restaurant that had everything!" that was the hospital cafeteria so we could stock up on food for the day.

Mary was blessed to attend a girls' vocations talk hosted by Sr. Deidre Byrne of the 2020 Republican National Convention fame.

 

Another day of school was merely partial because I was gone at clinic till early afternoon. I went to bed yet again plagued with doubts about how on earth I am going to provide an education to our children in the big picture, especially if cancer remains part of our life for years (which is not uncommon). Chris is doing his best to encourage me, but encouragements are not very strong compared to the strength of my melancholic personality.

5. Thursday

You never know where a day will take you.

Thursday was David's seventh and final day of quarantine, with the oncologist telling us that David could rejoin the family but we still need to make sure he and Thomas are not touching, sharing drinks or utensils, etc. This has been a long week and my productivity was very low.

I was able to teach some school on Thursday, including going beyond math and reading to teaching history to the little boys. We are studying ancient Hebrews right now so, after much reading about them, we made shofar horns . . . as if these bouncing boys need any volume amplification! The horns were declared an outside-only toy!

Thomas was happy and cheerful all day, enjoyed school, played outside, drove his truck around, and even helped make beds and vacuum carpets.

However, right at 5:00 as I was in the midst of cooking dinner, I noticed Thomas suddenly seemed "off." Mothers know what I mean. He was watching TV and told me he was cold. He doesn't ever say that. He asked for a blanket. He doesn't ever do that. I got him a blanket and his body felt a normal temperature. But then he told me he felt hot and asked if he could take his shirt off. He is very modest and does not ever do that. Still, his body felt totally normal to my hands. At that point, I took his temperature and it was 99.2, so I knew given his labs from the day prior that I was on high alert. He ate dinner heartily with us and seemed okay, except when he did not seem okay: he was emotionally labile and tearful in between being happy. He asked for "lots of blankets" at bedtime, this from the child who sleeps with no blankets. I kept checking his temp and it stayed floating in the 99s.

100.4 is the magic number for a neutropenic fever.

I tucked in the other two boys while Chris tucked in Thomas in our bedroom. As soon as my crew was asleep, I marched over to Thomas (he had kicked off all his blankets) to check his temperature again and now it was 101.1 and he woke up screaming, crying, and complaining of headache, which continued for a good ten minutes.

I was out the door to the hospital with Thomas within ten minutes, thanks especially to Chris and I talking through the plan numerous times in advance and each of our children listening to instructions and running to get the item I needed to pack up

It may seem so strange to a non-cancer parent. I'm the parent who has always let fevers do their job. I'm the parent who does not medicate fevers typically until they reach probably 103 degrees, and I mostly only do so at night to allow the child to sleep. However, a child undergoing chemotherapy who is neutropenic has no functioning immune system, so fever is an emergency. We all have bacteria in our body that is constantly being kept in check by our immune system that will suddenly grow out of control. A neutropenic child can become septic within mere hours.

Thomas's white blood cell count was 0.3 (normal is 4,500 to 11,000) and his ANC was zero (normal is 2,500 and 6,000).

The only negative to our check-in process was that we were kept on hold trying to reach the on-call nurse line for twenty long minutes. I remained on hold while I was driving to the hospital. I knew according to instructions that the on-call oncologist would have to call in to the hospital to have a room ready for us and I knew that the goal was that Thomas would be hooked up to IV antibiotics within one hour of 100.4 fever starting. Because of the delay answering the phone, I was told to wait in the parking lot with Thomas until a bed was ready for us. My Mama Bear emotions during that time were Very Big, but I can write in retrospect that all worked out well and God provided.

Finally asleep at the hospital around 10:00 p.m.

6. Friday

We are in the hospital until Thomas's blood numbers start to rise on their own. We have been told that these hospital stays are typically three to five days.

Our sweet boy's fever broke in the night (his sweet head bathed in sweat), which is good. The two doctors who have seen Thomas here both emphasized that it does not matter that his fever broke, we still did the right thing following instructions to get him here immediately and that he needs to be in the hospital receiving antibiotics to be safe. He is receiving three antibiotics and may receive an antiviral pending HSV1 test results.

This poor child has already had three COVID tests already (I think) and had another one upon entry yesterday with a fever and we are quarantined to our room until we have a negative test. The latest is that something was "rejected" about that test, so they are talking about doing a second one today. But Thomas is scheduled for one on Sunday because it has to be done within X number of days before his MIBG scan, and we're being told that the test yesterday and possibly today won't count toward that, so Thomas will have to have a possibly third COVID test two days hence. And he is already scheduled for yet another COVID test one week after that one in order to "count" for his surgery date. These are not fun. Please pray for us navigating these bureaucratic policies.

Thanks for your prayers!

7. Bonus Reading

A Sensible and Compassionate Anti-COVID Strategy by Jay Bhattacharya, M.D., Ph.D., Stanford University

"Masks have become a political tool and a talisman. When COVID-19 hit, governments panicked and created enormous fear. The Centers for Disease Control currently estimates a COVID-19 survival rate of 99.99 percent for people younger than 50, but the damage created by the panic was too great to undo."  These 12 Graphs Show Mask Mandates Do Nothing To Stop COVID by Yinon Weiss at The Federalist

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