“It’s the cold fish dying in your stomach feeling. You try to forget about it, but as soon as you do, the fish starts flopping around under your heart and reminds you that something truly horrible is happening.” (Ozeki, 2013, p.180)
Since Theo relapsed, I have been at war with my emotions. Like a bubbly cheerleader I tell myself to stay positive, it could be worse, Theo is strong and in great care, we’ve got this! While deep inside I am terrified and heartbroken. I feel cheated and angry, and I want to scream!!! But what good would that do? What’s the point, really, of being angry? It only hurts the ones I love. What kind of mom does Theo need me to be? What kind of wife do I want to be? Every day gets a little bit better, and I tell my darkest emotions to go away. I unthink them, I silence them. Or at least I try. Some days it feels like there are 50 fish flopping under my heart. But… I MUST remind myself that it is okay to not be okay. I am not alone. I am just another person struggling, another broken heart, feeling pain like so many others. I am not special or unique. Life is HARD.
I am not okay… and that’s OKAY.
On June 22nd, Theo was discharged from the hospital. Or as I like to say, we checked out of Hotel Children’s. It came as a huge surprise because we were told initially that Theo would be in-patient for at least one month. It had been only two weeks! Theo was making great progress right at the start of treatment. His peripheral blast count had gone from 47,000 to 212 in only three days. When those cells rupture, they release uric acid and other toxins… so you can imagine how hard his body is working to get rid of all that waste! Theo was drinking about 60oz of water a day. More than enough to be unhooked from the IV pole and taken off the fluids. Theo’s blood counts also looked good. He did not need any blood product, his liver and kidney function were stable, and his ANC was 1,400. Theo was so relieved. After 14 days of being in the hospital, he was finally going to get some fresh air. Discharge came just in time. Two days earlier, Luis tested positive for Covid. Theo did NOT test positive, thank goodness! That was the last thing we needed to interfere with his treatment plan. However, per hospital protocol, Theo and I were put in strict quarantine for 10 days. That means that I could only leave the hospital room one time per day, and I was not allowed in any of the community spaces in the hospital (e.g., Starbucks, Family Resource Center). Theo was not allowed to have any other caregivers stay with him and no visitors from within the hospital, such as tutoring, gaming specialist, music and art therapy, and physical therapy. Not to mention, we couldn’t see Luis for 10 days!! As if this wasn’t hard enough already. Now, our family is separated, sick, and in limbo. The next 10 days were going to be brutal. Fortunately, we escaped just in time.
Waiting to be discharged is like waiting to deboard a 20-hour flight that has just landed but taking forever to get to the gate. As soon as I hear “discharge” I’m like the passenger standing up waiting to grab my bags as soon as the plane is done taxiing. Ohhh, but there is still so much to do. It doesn’t matter how many times we’ve been through this before. This is like starting all over again, except now, Theo is even more high risk than before. I was even given the family binder, brand new, full of all the information on how to care for a child with leukemia. Ugh, I just wanted to barf when I saw it. I get it, it’s required. They have to go over everything. And they know this, so the discharge nurse began every sentence with, “you probably already know this but…” Well, turns out I do not know ALL of it. There were a few new skills I needed to learn. A nurse from Home Care Services trained me how to flush Theo’s central line with sodium chloride and heparin, which has to be done daily. I also learned how to change the caps on his central line as well as change the dressing covering his central line, which is done once a week. Then I was given two large boxes full of materials to do all these tasks at home. Could we handle all this? Did we feel comfortable going home and giving Theo his meds? Two and a half years ago I was probably dizzy and sweating from trying to keep up with all the information. Not this time. Can we handle this? As Theo would say, “like eating a bowl of mashed potatoes”. Heck yes, now can we please leave?
Theo is back to taking a long list of medications every day. Sometimes up to 10 pills in the morning: Vit D3, levofloxacin (antibiotic), ursodiol (liver protector), bactrim (antibiotic), Noxafil (anti-fungal) and lisinopril (heart protector). He had been taking allopurinol as well, to reduce uric acid levels, but no longer needed it. The third round of Inotuzumab was scheduled for the following Monday, June 27th, and a 3rd back poke the next Tuesday, June 28th. Until then, our only plan was to get outside as much as possible. Lucky for us, summer weather had finally arrived. The only thing missing was Luis!! He had to stay away until he tested negative for Covid. Kingston, our dogs, our house, are all patiently waiting for our return home when Theo is stable enough. It’s great to be outside, but we are not together. I miss my family being together, all my lovies.
We arrived at Theo’s appointment on Monday, June 27th, ready for the next round of Inotuzumab. Only one problem: Theo’s liver function was way too high. A sign of a very irritated liver, which, if continued to be irritated, can lead to liver failure. The Inotuzumab was cancelled, and some changes were made to Theo’s medications. They told us to hold off on giving Theo his bactrim (antibiotic) until further notice. Theo also needed to go back to receiving Micafungin, an anti-fungal medication that he was given through his central line while in-patient. When Theo was discharged from the hospital, they switched the medication to a pill form, called Noxafil (generic name: posoconazole). Unfortunately, it is harder on the liver and can cause a lot of irritation. Treatment leading up to and following a bone marrow transplant puts Theo at risk of fungal infections. Needing the IV Micafungin at home daily meant – you guessed it – more training for me! Another training visit from Home Care Services and another big box full of supplies and we were set. Another box to check off on my list of daily meds to give Theo.
On Tuesday, June 28th, Theo had a lumbar puncture (back poke) of methotrexate, hydrocortisone, and cytarabine, just as planned. It was his third back poke with chemotherapy. At that time, he had a peripheral blast count of zero. However, the blast count in his spinal fluid was still getting readings of 12-18. The goal is to have three consecutive back pokes where the spinal fluid has a blast cell count of zero (aka negative). We did not have one negative result yet. Well, turns out third time’s a charm! The result from his third back poke on June 28th was finally negative! Theo is scheduled to have two more back pokes, which will also (finger’s crossed) be negative.
Cytarabine… hmmm, ring any bells? It’s a chemotherapy drug that Theo has had before. Now he gets it along with methotrexate and hydrocortisone with his back pokes. One thing I remember about cytarabine is that it gave Theo fevers and headaches every time he had it. Well, wouldn’t you know it. Theo had splitting headaches following the June 28th back poke. The headaches were positional, meaning he felt them as soon as he sat up, coughed, or moved his head around too fast. Positional headaches are a common side effect of back pokes. When a needle makes a hole into the spinal fluid, fluid can leak out and create pressure from the misplaced fluid. Taking a caffeine pill immediately after the back poke helps constrict the blood vessels to prevent fluid leakage. We will find out soon, after his next back poke, if it works. Theo also spiked a fever on Friday, July 1st, which landed him back in the cancer care unit. At least his room was on the 8th floor with views to Lake Washington and the Space Needle. We might not have been roasting marshmallows on the 4th of July, but holy smokes, we had one of the best views for watching the fireworks from his hospital room! On Monday, July 4th, he finally got out of his bed to play. His appetite was slowly coming back, and he was feeling much better. I could see it in his eyes, the energy returning to his body like a battery recharged. He was ready to do something… anything! He was like a superhero who, just after discovering his powers, needed to release them. But how? It’s beautiful outside and we’re in a hospital room. We tried it all: punching, dancing, kicking, a pillow fight! It was not satisfying him, and at end, he just sat by the window looking outside and said, “I wish I could punch through this window and go outside.” Soon my love, very soon.
On Tuesday, July 5th, we were discharged. Theo had a back poke, followed by his third dose of Inotuzumab in the morning. It had been two days without a fever, and he was drinking plenty of water. Unfortunately, the results from the back poke that day came back positive. I swear I can always tell when the doctor is about to deliver bad news. Their eyes say it all. I know these doctors well by now and they know us. They are the most incredible, caring, intelligent, hard working people. I know it breaks their heart, too when the treatment is not giving us the results we want to see. We are back to Theo needing three consecutive negative back pokes. On the upside, we got to leave the hospital.
JUST KIDDING!! Wait, is this some kind of bad joke?… Well, it is true, we were discharged, as planned on Tuesday, July 5th at around 5pm. Theo’s vitals and blood counts looked good, but he was definitely feeling out of sorts. Grumpy, tired, loopy, indecisive, just very emotional in general. It had been a very busy day with chemotherapy, meds, and anesthesia, so it made sense that he would not be feeling like his normal self. Before bedtime he complained of being very cold and couldn’t wait to get warm and cozy under the covers. Ugh, that is not good. Chills is usually a sign that a fever is on its way. Sure enough, at 1am Theo woke up with a temperature of 103.8F. CRAP!! Eight hours after being discharged we headed back to the ED. At that point I was in full panic mode. My heart was racing as I drove us back to the hospital with the worst thoughts in my mind. After five hours in the ED, we were taken to our room in the cancer care unit. Our third room in the past month. Theo was having a terrible night. He threw up all over himself in the ED and was kept awake while nurses and doctors performed their usual exams, poking, sticking, flushing lines, giving meds… we finally fell back asleep at 6am. It is not clear what caused the sudden fever. But typically, when fevers come on suddenly like this, it is likely a fungal infection. Therefore, Theo’s doctors decided to add back on the other broad spectrum anti-fungal medication, Noxafil (posaconazole). Theo is what doctors call, “Functionally Neutropenic” meaning, he has neutrophils and a presence of an immune system, but it is not known how well the immune cells are functioning. Kind of like having fake neutrophils. Until it’s known what is going on in his bone marrow, it is assumed that Theo’s immune system is not functioning properly. So here we are, back in the cancer care unit again, back to passing the days, going loco, in our bubble.
I think back about two weeks ago, after we were discharged the first time. The heat wave came and went like a typical Seattle summer tease. You could see the classic first sunburns of the summer on every Northwesterners pale sun deprived skin (including my own). Theo and I beat the heat by having picnics, squirt gun and water balloon fights, and taking cool walks through the ravine in Ravenna Park. It was just a taste, but it felt so good. Like maybe we could have a fun summer after all, and maybe Theo won’t be in the hospital or in bed sick all the time. Maybe… maybe not. I MUST take advantage of every sunny summer day with Theo and Luis when Theo is feeling good. Be outside recharging, filling up our souls with sunshine. Be in the moment. Because this his is how it goes. In and out of the hospital like a yo-yo. Just when life is feeling good, Theo’s temperature starts to rise and puts us on edge. We don’t know how long the good feels will last or how long we will get to be together, outside. All of this, everything feels so familiar and yet so unfamiliar at the same time. It’s like I have been here before but in another dimension. I know the doctors, the routine, I even know my way around this hospital better than some of the staff. The medications, blood counts, symptoms and side effects are nothing new. But when it comes to the larger picture… the transplant… THE TRANSPLANT. We don’t even know what’s happening next month!! What is the plan?? I am clueless. The unknown sends my emotions back into battle. I feel like I’m walking towards a cliff blindfolded, waiting for my foot to drop. I take a deep breath, close my eyes, and enter a place of nonthinking. I breathe and count and just be in a moment of nothingness. My zazen.
It is okay to NOT be okay.
“The key to hanging out, is music” – DJ Theo