Have you ever seen a moon snail eating apple pie? Or wished upon a sea star falling in the sky? I once saw a great blue heron talking on his phone while a geoduck clam was enjoying an ice cream cone. The black-eyed hermit crab was sitting in the shade, selling hats and mittens that he and his friend had made. A harbor seal was playing cards with a pacific sand lance. The ghost shrimps were playing music and practicing a salsa dance. The sea cucumber was on a bike ride with his buddy the sea gooseberry. Then like magic, an orca whale jumped over the Kingston ferry. I know this all sounds crazier than eating a fried egg jelly, so go see for yourself and you’ll discover what’s silly, bizarre, and smelly. Amazing things happen in the Puget Sound all the time. I know because a bald eagle made up this crazy rhyme!
Life by the beach is good. Good for our mind, body and soul. Good for writing silly poems, too! I can say with confidence that this summer has already turned out to be one billion times better than last summer. So far Theo has not thrown up once, he has no feeding tube, we have spent ZERO nights in the Cancer Care Unit, and he has gone swimming… three times! This is exactly what we imagined Maintenance to be like. The difference in the way he feels and acts compared to last year, is like night and day.
During Theo’s provider visit on Tuesday, June 15th I spoke with his doctor about Theo’s activities and his life returning to “normal”. It’s tricky because “normal” is different since Covid-19. My family and I are slowly and cautiously making our way back to society, one baby step at a time. Being around a lot of people still scares me, especially kids. Theo never complains about putting on a mask. He is a pro when it comes to washing his hands and careful not to get to close to people. It’s other kids I’m worried about. So I asked Theo’s doctor, is it safe for Theo to return to school this fall in person? Can Theo play on a soccer team? Can we go on a road trip? Stay in a hotel? The answer: YES. In fact, she encouraged it. She wants Theo to get out there, play, be a kid… get back to whatever “normalcy” he can. As long as Theo’s ANC is above 500 he can do all of those things and more because it means that he has a strong enough immune system. That is truly what matters. If he has no fevers, no cold symptoms, good energy and says he’s feeling well, then it’s safe to say his ANC is doing well also. If we are ever in doubt or suspect that something is going on, then we can make an appointment for labs to look at Theo’s blood counts. As soon as I told Luis the good news we made plans to stay in a hotel with a pool. Theo has been asking to go swimming all year! He loves it. He can spend hours doing cannon balls and Spider-Man moves under the water. Theo was so excited, we went swimming before dinner and again after, staying up late. The next morning, bright and early at six am, he was ready to go again. He would’ve slept in his bathing suit on the pool deck if he could. So it’s settled then. Theo will be in first grade at Gordon Elementary in Kingston this fall and playing soccer with the North Kitsap Soccer League. Time to let my big boy grow up!
On Monday morning, June 28th, Theo’s temperature was at 99.1, in the recheck zone. It stayed high all day. This was also the day it reached 100 degrees, so we thought it could also be that he was just HOT. The next morning his temperature was back down in normal range but he was starting to cough, complaining that sometimes it hurt when he coughed. By evening time his temperature was back in the recheck zone. Oh brother. I guess even all the best hand washing cannot stop you from getting a bug every now and then. We started albuterol right away and kept a close eye on his temperature. The cough progressed, getting worse by the day and eventually keeping him up at night. When I called the hematology/oncology clinic, the charge nurse advised us to continue promoting rest, fluids, tea with honey and albuterol. There was no need to come in unless he spiked a fever. It felt like we were suddenly standing on a cliff, waiting for the edge to collapse. The familiar knot in our stomach tightening as it has before. There’s nothing else you can do except wait and hope the fever does not spike in the middle of the night. I just wanted to tell the fever, “If you’re going to go up, go up already! Either spike now or go down for good. Stop playing these games!!” Theo was still in the recheck zone on Friday morning, July 2nd. We decided to pack a bag and go to my parent’s house just to be closer to the hospital. Wouldn’t you know it that as soon as I finished packing, Theo’s fever spiked to 101.1. Emergency Department here we come!
Going back to the ED was a lot like returning to work after being on maternity leave. I felt out of practice. Silly, right? It has been so long (seven months actually) since we have had to deal with a fever. The thought of spending the night in the hospital made my heart sink. Most of all, Luis and I couldn’t stop thinking that this was something really bad. When a cancer patient calls in with a fever, the ED is alerted and waiting for the patient to arrive. We immediately got checked in and taken back to a room. No waiting. Theo had his port accessed, a Covid-19 swab and broad spectrum swab done. This is all so routine for Theo. It’s as easy as getting his toenails trimmed. The nurse, in a gentle kind voice, told Theo she was going to place “some little stickers” to his chest. Theo immediately corrected her and said ever so seriously, “you mean EKG leads'”. He can’t help himself from correcting anybody if he can. Even though they are just trying to make the experience as pleasant as possible. He’s been through it so many times. He prefers the nurses and doctors to be straight forward, direct. We have been very honest and to the point with Theo through it all, with everything. Sure, we sprinkle a little sugar here and there, but no fluffy fluff. His doctors in clinic are great at doing that as well. They know how to make him laugh and feel comfortable without treating him like a baby. We found out that his blood counts were strong. No need for any transfusions and his ANC was above 2000. The Covid-19 swab came back negative but he did test positive for parainfluenza-3, a common virus that causes an infection of the upper and lower respiratory tracts and a fever. Four hours later with a temperature of 103.4 degrees, we were told we could go home. I was instructed to give Tylenol every four hours as needed and to call first thing in the morning if Theo had a fever. If Theo did not spike another fever in the next 24 hours we would not have to come back to the hospital. Wait a minute… you mean we might have to come back tomorrow??
The next morning Theo woke up with a temerature of 103.4. Outlook not so good. I called the clinic as instructed. Again, I was told to continue with Tylenol as needed and if the fever goes up after 24 hours since his discharge the night before, it would be back to the ED. Theo’s temperature dropped throughout the day, eventually reaching 98.3 degrees at 4:30pm. His energy was better and he was comfortable. Theo did not seem to need Tylenol after his 12:30pm dose, from my assessment. So I didn’t give him any for the rest of the day. He was feeling better. At 8:30pm, just as we were about to turn out the lights and go to bed, I checked his temperature one more time. 101.6 degrees! UGHHHHHH. Here’s my dilemma. Theo didn’t need the Tylenol, BUT had I given it to him, maybe he wouldn’t have spiked a fever. So was this going to be our routine every night? Going back to the ED until he stops having fevers? YEP.
This is how it was explained to me by the doctor. The fever was inevitable. Tylenol could have kept it down but by the morning it would have spiked again. Yes, we know that parainfluenza-3 causes high fevers, but with a central line (port) we cannot take any chances of there being an infection in the blood stream. Hence why we have to return if there is a fever 24 hours after discharge. The fever is most likely caused by the parainfluenza virus, but to be absolutely safe, blood culture has to be checked for the presence of bacteria growth, aka an infection. So there you have it. Another visit to the ED and four hours later we were discharged again.
Theo has not had a high fever since. He recovered quickly and has been feeling great. There is one other thing though, something quite alarming, that we noticed during one of our visits in the ED. Theo has a large and very noticeable hernia! When Theo was coughing we both heard a funny gurgling sound. He has complained a couple of times in the past about a mild pain in his right side, but saying it was in his hip. But when he pointed to the area of pain while sitting in the hospital bed, it was definitely not in his hip. It was to the right of his bladder, almost groin area. I pulled back his shorts and when he coughed again I saw a bulge jump up like a snake under his skin! Holy Chamoly! The doctor came to take a look and confirmed what we saw. Well, there’s nothing we need to do about it right now. If he starts having more consistent pain or if we notice any abnormalities of his skin in the area, like redness or hardness, then we will be heading straight to the ED. It is a big enough hernia that it will eventually need surgery to be corrected. In the mean time, Theo will focus on the task at hand: kicking cancer’s butt.
On Tuesday, July 13th, 2021, Theo returned to the clinic for labs, provider visit, and… drum roll please, BACK POKE!! Theo had a slight lingering cough even after his fever broke. We increased his Albuterol to three times a day as instructed by his doctor. It worked! The day of his back poke, his cough was nearly gone and his doctor did not detect a wheeze in his lungs. He was cleared to go to the sleepy time room. But not before playing his new favorite game, Cat and Mouth, with the nurse, doctor, and anesthesiologist, Dr. Carl. Party time in room nine!! It was a riot. Everyone was laughing as another person came into the room to take a turn. (Shout out to my friend, Katie, for gifting the awesome game to Theo). Otherwise, it was a straight forward appointment. His blood counts were strong and he looked healthy, no other concerns. His Methotrexate dose was increased to 75%. The goal is to slowly increase his total chemotherapy dose to 100% and see how Theo does. As long as his blood counts stay strong with the increased dose, they will continue to increase it until it’s back at 100%. So far so good. Theo has not slowed down one… little… bit.
The next scheduled appointment is not until August 13th. That’s four fabulous weeks away from the hospital that we plan to take full advantage of (as long as Theo stays healthy). We are going to have a four week, all inclusive, five star Pacific Northwest summer getaway! Best part is, we need not look any further than our back yard. There are trails, ponds, creeks, and sea life all around us. Now is the time to get outside and soak it all in. Summer is my absolute favorite time of year. I dream of it. My body aches for it every winter when my hands are numb and frozen like ice cubes. I crave summer like my first sip of coffee the morning. We are in it, right now. This is my dessert, the treat I’ve been patiently waiting for. This summer is extra special. Not just because Theo is feeling better. It’s because I get to spend so much time with Theo and Luis, my lovies. As Theo gets older, he will have more friends, more activities, more interest to be out doing other things. Kids are busy these days! NOW is our time together. When we have the luxury to just get in the car and drive to a beautiful, empty, serene beach and spend time together as a family. There is a whole world of adventure waiting for Theo. For now, we will enjoy this moment, enjoy the nature around us and just be loved.
“The greatest thing you’ll ever learn is just to love and be loved in return.” -Nat King Cole, Nature Boy