This was my last Instagram post before we found out my son, Theo, had leukemia. It seems silly now… big doors opening to Children’s hospital? We spent two weeks in Mexico over the holidays. It was beautiful as always. I came home feeling refreshed and recharged for the new year ahead. Well, life happens, whether you are ready or not. So here we are. I don’t think anyone can ever prepare themselves for cancer. Not even Spiderman. But we are strong, we are brave, we are champions.
I am opening the doors to my heart and mind with this blog. It is my way to keep friends and family updated with Theo’s leukemia treatment. A way to for me to express my feelings and share my family’s adventure. Welcome to my blog.
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“If you can imagine it, you can achieve it. If you can dream it, you can become it.”
A warm breeze, the morning sun, a fresh cup of coffee. I am sitting under the maple tree in our front yard with Luis, my love and best friend. We are all home in Kingston for the week. It is our first summer morning sitting together, looking at the trees, listening to the birds, and watching as they swoop down to our bird bath and take a cool sip of water. Luis tells me that recently, we have had a regular visitor to our bird bath. A dove. He comes every morning and evening. We hear him call out from the trees across the street, alerting us to his presence. A sound that brings us peace. Today, he has brought a partner, another dove. Together, they fly over to our maple tree and greet us before they glide down to the bath. Two beautiful doves. For the first time in over a month, I feel calm.
“Welcome to the first day of the rest of your life.” This is what one of Theo’s doctors said to us when Theo was first diagnosed back in 2020. After Theo completed treatment in January 2022 it felt like it was over, we had won the battle and Theo was healthy. Cancer free, moving on. It was a thing of the past. This time is different. This is forever. Not the cancer, but everything it carries with it. The medications, side effects, complications, and treatment. The fish never stops flopping around in my stomach. It’s the pain of knowing what Theo will go through, worse than before. And just waiting for it to happen, like a bad car crash. Waiting to find out how bad it will be. How sick will he get, what damage will be done? Is there an end to this journey? And if so, what does the finish line look like?
We have a plan. A very hopeful yet incredibly terrifying plan. In the last three weeks, Luis and I have had to swallow and digest a very onerous load of information. It’s added some noticeably heavy weight to our minds like a dark cloud following us around. There is no escape, no shelter from the storm. Life is hard. We take it, like a pill. It’s hard to swallow but we do it and keep going. Then I remind myself: What kind of mother does Theo need me to be? What kind of wife do I want to be? Loving, positive, patient, focused, brave, courageous. So… here we go.
When I last wrote, Theo was back in the Cancer Care Unit. He tested positive for rhinovirus. It was causing high fevers almost every night along with another wicked wet cough. That dang cough. Every time it starts to fade, and we think it’s finally gone, another one jumps up, and it starts all over again. Theo stayed in-patient for one week. On Tuesday, July 12th, we received good news that his bone marrow sample came back negative. The flow test (a sample of about 10,000 cells) did not detect any leukemia cells in his bone marrow, which means… Remission! That also means that Theo is no longer functionally neutropenic. His immune system is functioning as it should. His neutrophil count was high, so even though Theo was still having fevers, the doctors let him leave the hospital, knowing he had a strong enough immune system to fight off the rhinovirus. Another test, called ClonosSEQ, was done on July 18th. It takes a deeper look at the bone marrow (a sample of about 1,000,000 cells) to look for sequences and patterns that are similar to developing leukemia cells. Please do not ask me to explain more beyond this. I have tried to understand these test results as best as possible. My head is spinning already! Based on the ClonoSEQ results, the estimated MRD value is 813 clonal cells per million nucleated cells. In other words, those are 813 markers for disease. Didn’t I tell you leukemia cells were sneaky?
Remission. Although it is exciting, remember that the goal is DEEP remission. Theo was still having positive back pokes. Leukemia cells are still present in his spinal fluid. Theo’s disease seems to be resistant to the chemotherapy being used in his back pokes and therefore ineffective. How do we get to deep remission? How do we eliminate the disease in his CNS?
First step, high dose methotrexate. On Tuesday, July 19th, Theo checked back into the Cancer Care Unit. The high dose methotrexate runs through an IV for 24 hours. Theo must clear the methotrexate before he can be discharged, which can take anywhere from four to six days. To help clear it, Theo was hooked up to heavy fluids 24/7, making him pee every two to three hours. He had to take sodium bicarbonate pills every six hours to prevent his pee from becoming too acidic. He also took leucovorin, a medication in pill form that helps clear methotrexate, every six hours. Needless to say, Theo did not get a lot of sleep during this treatment. He was constantly woken up. Either to take pills or to walk with the IV pole to the bathroom so he can go pee in a plastic urinal. Theo cleared the methotrexate in four days, and we left the hospital on Saturday, July 23rd. The second step was the addition of Disatinib. Sound familiar? Wait a minute… it almost sounds like Imatinib! In fact, it IS similar to Imatinib. It penetrates into the spinal fluid attacking leukemia cells with the Philadelphia chromosome. The third and final step to get Theo into deep remission is CAR T-cell immunotherapy. Theo’s T-cells (white blood cells that fight infection) are first extracted from his blood, a process called, apheresis. Those T-cells are then re-engineered in a lab to have Velcro-like tags that attach to the leukemia cells. Basically, like Pac-Man, they seek out and destroy cancer cells. Each leukemia cell has two tags: CD-19 and CD-22. It is important that the CAR T-cells attach specifically to those tags. Pretty incredible, right? Using the body’s own immune system to attack the leukemia! There you have it. Three steps to get Theo in deep remission. Theo was all set up, consent form signed and ready to go for apheresis on Tuesday, August 2nd. The only thing we were still waiting on was an approval from insurance.
On Friday, July 29th, Theo’s doctors sat down with us to deliver some upsetting news. Theo’s insurance, Cigna, DENIED COVERAGE FOR KYMRIAH, THE FDA APPROVED CAR-T CELL IMMUNOTHERAPY. WTF? Are you kidding me?!?! Everyone is shocked, upset, LIVID. Seattle Children’s Hospital has teams of people fighting insurance companies on a daily basis to get treatment covered for sick children. Theo’s doctors spend hours on the phone answering questions and responding to them with detailed letters about treatment daily. How is this legal?? That an insurance company can determine what treatment a sick child can and cannot receive?? How dare they. They do not know Theo! They think they know what is best for him?? Why do they have the right to tell me and his doctors what is medically necessary? This is wrong on so many levels. One of the biggest jokes of the American health care system. When a child is diagnosed with cancer, the ONLY thing an insurance company should say is, “YES” to treatment. Cigna will only approve the CAR T-cell therapy if it is done in San Diego, at a hospital that has affiliation with Cigna. Oh, how convenient for them! Theo would have to spend two months in San Diego while receiving the therapy. Of course, Cigna would not cover any of our expenses to go there. So why San Diego? Well, let’s think. It’s obviously cheaper for Cigna to have Theo go to this hospital in San Diego. Insurance companies don’t care about what is best for a patient. They care about the cost!!! I have been fuming about this for days. Anger on top of sadness on top of fear.
So now what? If the recommended treatment is CAR T-cell therapy, then that’s what Theo will get. There is another option. Seattle Children’s Hospital is re-opening clinical trials for a CAR T-cell therapy. It was not brought up before because the trials have been closed. Theo’s doctors informed us that the trials were scheduled to re-open soon. They believe that this will be an effective treatment for Theo. It is very similar to KYMRIAH. There are only two differences. One, this therapy is not FDA approved. However, there has already been a lot of success with other patients who have received this therapy. Second, unlike KYMRIAH, which only makes tags on the CAR T-cells to attach to CD-19, the therapy in clinical trials makes tags that attach to BOTH CD-19 and CD-22. That makes it a more effective and longer lasting therapy. The side effects are also expected to be the same. Still incredibly scary… but the same. The most common and likely side effect is cytokine release syndrome. The infusion of CAR T-cells causes the immune system to go into overdrive. Theo will be seen every day in clinic following infusion, on high alert for symptoms like fever, low blood pressure, dizziness, severe nausea, and neurological toxicities. The question is not IF he will have side effects, it is more like, HOW SEVERE will they be? Theo’s doctors expect Theo to be admitted to the cancer care unit at some point following this therapy. Hopefully it will be mild and for only a short period of time.
Theo’s bone marrow will be checked (MRD) two days before apheresis and again at day 28 and day 61 following infusion of CAR T-cells. At that time, we hope to have established a deep remission. On Tuesday, July 26th, Luis and I met with the lead doctor on Theo’s transplant team. We had our first official consultation about the transplant and the steps leading up to it: the arrival and conditioning. Where to begin? The arrival. That is when Theo’s care is officially transferred to the Seattle Cancer Care Alliance. Theo will have a new team of doctors, that specialize in caring for transplant patients. He will need full body testing done, which takes about two weeks. Everything from his heart to his cognitive function will be examined to collect data on his health prior to the implant. Then he will begin conditioning. Conditioning is basically wiping his body clear of… everything. A clean slate. No immune system, no cells being produced in the bone marrow, nada. Theo will receive full body radiation and high intensity chemotherapy. All I know about radiation is that it kills everything. This is the scariest part for me. It terrifies me to think of it. Watching my baby boy’s body become so depleted, sick, and weak. Theo will lose his ability to make sperm as well. There is about a 98% chance he will become infertile. Up until this point, Luis and I have been too scared to ask about Theo’s fertility. Now we know. It’s cooked. The consultation was horrible. Nothing like what we were expecting. Luis and I sat down and listened to the doctor go on non-stop for AN HOUR about all the horrific things that can possibly go wrong before, during, and after transplant. She listed all short term and long-term side effects. Growth delays, cognitive delays, severe organ trauma, transplant rejection, risk of infections, and on and on. So, there we were. Sitting quietly, digging my nails into my skin, holding back tears while we listened to the small print at the end of a drug commercial. HEAVY. Not a conversation Luis and I were ready to have. All of it. We just weren’t ready. Deep breath. One day at a time. We still have a way to go.
This is the part now, where I remind myself and all of you that Theo is a superhero. That he is the kindest, strongest, funniest little human being I know. A powerful and positive ray of sunshine. One day, while in the cancer care unit, Theo was making his way into the bathroom with “Beep” the IV pole. Beep’s wheel rolled into his toe. Theo got upset and yelled at Beep. Immediately after, Theo apologized to Beep and said, “I’m sorry, it’s not your fault. I’m just frustrated because I don’t want to be here.” Theo is such a wise soul and loving human being. I believe in Theo. I believe in his doctors, and this treatment. I believe in us. Luis reminded me that it’s important to celebrate the little wins. There will be many battles, some harder than others. We will keep moving forward, smiling, no matter how hard it gets. Theo is not the first, nor the last person to go through this. We are not alone. Who knows what the future holds? Medicine is changing, advancing faster every day. People break through medical barriers all the time. We have friends and family that have proved doctors wrong. Walked when they were told they wouldn’t. Had kids when they were told they couldn’t. Lived long, when they were told their days were short. Miracles do happen and a 1% chance is still a chance! We never give up hope. For the past ten days, Theo, Luis, and I have been home together in Kingston. It has been beyond wonderful. We have been squeezing in as much summer fun as possible. It has been a time for us to recharge. Listen to the doves, smell the salt water, and bury our toes in the sand. A time to remind ourselves of our strength and love. A time to appreciate the things that really matter in life. Family, our health, and mashed potatoes.
“My favorite thing about being in Kingston this week has been being with my family.” – Theo Avila
“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… THETRANSPLANT. 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.
Two weeks ago, I was going through my notes in preparation to write a new blog entry. It had been, gosh, at least two months since I had given an update. I had all my detailed notes with dates and times from his visits with urology, cardiology, and monthly provider visits. Theo had been in and out of school with viruses and a wicked lingering cough for the past two months. He even went to the emergency room on May 3rd after four days of having a fever above 101.4F. At first his pediatrician thought it was pneumonia. It turned out to be the human metapneumovirus. It was like that all of April and May. One week at school, 10 days home sick. Just as he was starting to get better, he would get hit with something else. Swabs kept revealing one virus or another, which was expected for a six-year-old returning to school after a pandemic, right? Everyone is getting sick. Not just Theo. His blood counts on May 10th looked great. NO SIGN of leukemia. In the week leading up to his June 7th appointment, we started to become more concerned. Theo was lethargic, depleted of energy and asking to take naps during the day. He was sweating through his shirt every night and coughing… non-stop. Luis texted me on a Friday afternoon, “this is not normal. something is wrong”. He was right (Papa always knows). Virus or not, we believe it could have been the first real sign that something more serious was going on. But a relapse? No. Never.
Theo beat cancer. We celebrated; it was over. In the past, gone, moving on. So why am I here? Why am I talking to this doctor? Why am I sitting in this room next to the IV pole looking out this window? WHY AM I HERE??? I’m not here, this is not happening. We don’t belong here. This is an evil trick, a horrible lie. It’s over, we did it, Theo was free.
I don’t want to tell you, because telling you makes it real. I am half numb as I write to tell you…
the leukemia came back.
Don’t think… just sleep. This is not real. I am not here. Don’t think… just sleep. Don’t think… just sleep.
I didn’t want to write. But to be completely honest, I do not have the energy or time to write every family member and friend and reply to every email or text. Seven days later, I am ready to write about Theo. That’s why I started this blog in the first place, isn’t it?
WHY??? HOW??? That’s what you want to know, right? Isn’t that always the case. We so urgently ask the questions that often times have no answer. When Luis and I asked the doctors, their response was, “we don’t exactly know”. Not satisfied? Frustrated? Confused? Welcome to our world. Staying as calm as possible, we pressed for something more. Something that made sense to us. Didn’t Theo receive themost aggressive and intense treatment? Didn’t he go into remission? YES. But… there is no guarantee. There is no way to guarantee that every… single… leukemia cell is gone. Remember the bone marrow biopsy that was taken at the end of Induction phase? Stay with me. I’m going to take you back to the very beginning, back when we were first learning about all of this. Hopefully, it will shed some light.
In my post titled, 28 Days Later, there is a picture of Theo’s treatment roadmap (see above). After Induction 1B was complete, a biopsy of the bone marrow was done to reveal the percentage of leukemia cells still present. That percentage is called the Minimal Residual Disease (MRD) and is part of the risk assessment. There was less than 0.05%, which, put Theo in the standard risk group. From there, he moved onto Arm A, the more aggressive arm of treatment. Had his MRD been greater than 0.05%, Theo would have been on the path of receiving a Hematopoietic Stem Cell Transplant (HSCT) aka bone marrow transplant. Notice that MRD is not an absolute number, but a percentage. In other words, 0.05% is not the same as ZERO. Remission in that case, is not an absolute ZERO. It means that the number of leukemia cells is AS CLOSE TO ZERO AS POSSIBLE. Once Theo reached remission, he continued to receive a variety of intense chemotherapy cocktails in different phases to prevent the leukemia cells from coming back. With the goal being that the chemotherapy would wipe out everything, good and bad, multiple times, and only the good cells would grow back. Now that we’ve done some review, here is an answer that might make sense to you, because it makes sense to me (even though I am still in denial). Get ready for it…
It’s very likely and very possible that the leukemia came back because one or two leukemia cells remained. One or two incredibly stubborn S.O.B. leukemia cells somehow found a way to hide and survive all of the toxic, aggressive, intense chemotherapy that Theo had to endure for two long years. The painful truth of the matter is that it actually happens more often than you might think. In fact, 10-20% of people with acute lymphoblastic leukemia (ALL) will have a relapse within the first year following treatment. That’s a big number. So even though Theo’s treatment was a success, even though he went into remission, even though he completed therapy… one or two leukemia cells remained (probably).
Now, let me tell you how we found out. With risk for relapse being the highest during this first year, monthly lab draws to monitor blood counts are important. That’s the only way to know for sure that the cancer has come back. On Tuesday, June 7th, Theo and I went to the Hematology/Oncology clinic for his monthly lab and provider visit at Seattle Children’s Hospital. The appointment was carrying on as usual. After a quick poke in the arm to collect blood, the nurse checked his vitals, and we gave his provider an update on any symptoms or concerns we’ve had since our previous visit. We enjoy seeing Theo’s doctor while we laugh and chat about favorite new recipes, recent adventures, and of course, what trouble silly Bobo has been getting into. Everything was going well. And then… the blood counts came back from the lab. All it took was one look from Theo’s doctor. Her entire body changed. Her eyes spoke pain before her mouth. I felt it before she said the words, “There’s no easy way to tell you this…” as she was holding back tears. I wanted to stop her, yell at her, “Then don’t!! Don’t say it!!” But I already knew. It was too late.
What did she see? How did she know? Theo’s white blood cell count was 55,000. Blast count was 42,427. Blasts are immature cells made in the bone marrow that never mature. An obvious sign of leukemia when found in the peripheral blood. Those two numbers, that’s all the information she needed to know that the leukemia had returned.
What happens next? What is the plan?? So many questions, I know. I’m going to make this as simple as possible. I could literally write pages about Theo’s treatment plan. But for now, I’ll give you the quick version and save the details for another day. Theo has Acute Lymphoblastic Leukemia (ALL) same as before. We are waiting to find out if there is a Philadelphia chromosome attached. Theo will be staying in the cancer care unit at Seattle Children’s Hospital for the first month of treatment. In that time, he will receive a combination of steroids, lumbar punctures, and immunotherapy. He’ll be on steroids for five to ten days. Lumbar punctures (back pokes) will happen once a week, delivering a cocktail of chemotherapy to his spinal fluid. Inotuzumab is the first immunotherpy that will be used in the first month of treatment, delivered as an infusion once a week, given three times. This first month of treatment will bring his leukemia cell count down, hopefully as close to ZERO as possible., aka remission. The following two-three months he will be treated with T-Cell immunotherapy and/or Blinatumomab immunotherapy to get Theo into “deep remission”. Theo will then have a bone marrow transplant sometime in the fall. Full recovery from a transplant takes about one year, the first 100 days being the most critical. This past Friday morning, Theo had a double lumen Hickman central line surgically placed where his power port used to be. It is similar to the port, but the lumens are outside of the body so the cental line is constantly accessed. He is back to taking a long list of medications: antibiotics, antifungal, protectors for his heart, liver, and kidneys, steroids, and a uric acid reducer, all in pill form. The doctors say that Theo is strong and in good health despite the leukemia, which is, of course to his advantage. His heart has had some trauma from the previous chemotherapy he received, which has resulted in his heart functioning below average. Fortunately, the therapies he will be receiving this time are less toxic and do not cause as much trauma to the organs. We do not know much about bone marrow transplants. We’ve been told they are “a whole different ball game”. There’s been great progress in the past few days. His white blood cell count is already back down in normal range and his peripheral blast count is below 50!! Go Theo GO!
After I found out about the relapse, all I could think of was, what am I going to tell Theo? How am I going to tell Theo?? He has no clue. He was finally getting to live his life again! School, friends, his birthday in two weeks!!! How am I supposed to tell my sweet boy, that we have to start all over? That all the celebrating was over? That he won’t be going to the swimming pool or rock-climbing gym with his best friend. That he has to go back to taking PILLS!?!?!? He was sitting on the patient bed, playing with his new squishy ball when his doctor delivered the news. My angel. How is this fair? When he saw me crying, he came over and gave me a hug. He rubbed my arm and asked me why I was crying. I had to say something, he needed to know. With a pounding headache and blurry red eyes, I told him. I could barely hear my own voice, like I was deep under water. What he said in return was truly shocking. “Does that mean we get to eat chorizo tacos and draw on the hospital windows? Yay!” What a relief. He was not upset. But boy was I confused. The Child Life specialist told me that this is a very age-appropriate response. The beauty of being young. To have the ability to make difficult situations seem so easy. Theo does not understand the weight of the situation and the struggle that is to come. Theo is an eternal ray of sunshine, on a mission to make people smile and laugh. Even with both arms covered in plastic to cover the IV in each arm, he is still dancing in the shower, still making silly faces, and singing a happy tune at 3am after going pee while hooked up to the IV pole. His energy is contagious. We never stop learning from Theo. He already understands that sadness and happiness spread, so why bother being sad? If you are happy, then the people around you will be happy. He sees the positive in everything, the light in this darkness. Here’s what Theo says about all of this, “This is like a video game. We’ve already played this level, so we know what we are doing, we just have to make the right moves and do it better this time”. Words of a true superhero.
“Happiness is like a bright sunny day. If one million people are happy, it will be a bright sunny day. If one million people are sad and grumpy, it will be a gray gloomy day.” – Theo Avila
Once upon a time there was a boy, full of adventure and courage. He was empathetic and kind, making friends wherever he would go. He lived in Seattle with his parents and went to school where he learned Spanish, the native language of his father. One day the boy woke up with a runny nose and a hideous cough. Ah, another cold. Almost expected, as it was cold season in the month of November. As days passed, the cold persisted. No amount of rest or water could tame the beastly virus. It morphed and changed week by week, taking on new forms and creating new symptoms. Headaches came and went. Ears became so clogged the boy could barely hear. The cough, which at times seemed to dissipate, would return with a vengeance the following days like dragon fire. The boy and his parents had plans to go to Mexico in December to spend the holidays with family there. They were worried about the boy traveling with clogged ears and a cold. The boy’s parents took him to the doctor, twice. Both times they left with the reassurance that indeed, it was just a nasty cold. They were instructed to bring some Tylenol with them on the plane to alleviate any discomfort that the boy may experience in his ears from the change in pressure. By the time their vacation arrived, the cold had settled. They were all feeling better, safer for the moment. However, cautious and aware of the threat that was still there.
It was a comfortable flight to Mexico that December. The worst of the cold symptoms had disappeared. The apprehension and dread that had been following them for the past two months finally left and was replaced by the joy and excitement of being on vacation. The boy could hardly wait to go swimming in the pool and play on the beach. They had been looking forward to this vacation for so long, counting down the days. They had finally made it. Time to have fun and relax! Or so they hoped. As much as the boy’s parents wanted to let go of their worries, fear hung onto them. Something wasn’t quite right. The boy, although in good spirits and without cold symptoms, was missing the energy and strength that a healthy boy on vacation should have. Sure… he swam, he built sandcastles, he laughed and played. But it was softened and short-lived. As if someone had turned down the volume. The boy, at four and a half years old, was no longer taking long naps during the day. However, while in Mexico, he was taking naps as long as three hours every day. The boy, who normally resists an early bedtime, was eager to crawl into the sheets well before it was time. The boy, since birth a “hot potato” who is always looking forward to snowy days and a cool breeze, complained of being cold while the warm Mexican sun covered his skin. The skin, that normally would tan three shades darker in one day under the sun, was pale as a ghost. His energy and color gone, like it had been sucked away by a vampire. The boy’s parents, trying not to overreact or assume the worst, continued to believe that this unusual behavior was just the boy recovering from a bad cold virus, reassured by the recent diagnosis that the doctors had given them. They had good faith that after all the rest the boy was getting on vacation, he’d be back to his normal self by the time they got home. Unfortunately, things only got worse.
Towards the end of the vacation, the boy started having unexplainable pain in his right foot. Next came the bloody nose. By the time they were back in Seattle, his energy was so depleted he could not even walk up a set of stairs. The tiredness clung to him like venom, weighing him down every minute of the day. Red dots on his neck and thigh, (which they soon found out to be called petechiae) were the last and final sign that there was a bigger, scarier mystery to solve. Back to the pediatrician they went, knowing this indeed was not “just a cold”. This was something more serious. How serious, they were about to find out. The doctor noticed the petechiae almost immediately. He ordered an x-ray of the boy’s chest and blood to be drawn at Children’s Hospital. Did the boy’s mother hear the doctor correctly? She wondered nervously. Did he say, “slight possibility it could be leukemia”? Unable to believe such horror, the boy’s mother continued through the evening with complete disregard of the idea. So, they headed to the hospital where the nurse struggled to find the boy’ s veins and successfully draw blood. After four tries, the nurse finally got a sample. Exhausted from painful needle pokes and tears, the boy was anxious to go home and sleep. The boy’s mother, also ready to sleep, had assumed their adventures were done for the day. They ate some pizza on their way home and got ready for bed. Then came the phone call.
“Head to the emergency room right away” instructed the doctor. The next two hours were a blur of terror and doubt. Is this really happening? What is going on?? As soon as the boy entered the emergency room, he was swept away by nurses who immediately went to work on him. The boy’s mother was spinning, while the father, who was away on a work trip, drove frantically from Portland with dread in his heart to be with his family. The doctors finally confirmed the parent’s worst fear: leukemia. And so, their journey began.
The night we found out that Theo had leukemia, I cried the hardest I’ve ever cried in my life for two days straight. It was uncontrollable sobbing from deep within my gut. Each cry violently escaping my mouth like some form of exorcism. A way for me to process the pain so I could somehow climb out of the black hole and be present, in one piece, for my son. After those two days, my body felt numb. I had no more tears left, no more demon of pain inside me. That emptiness was soon filled with love, strength, and hope. Exactly what I needed for my family to win this battle. Time to put on my big girl pants. Theo needs me to be strong, he needs me to be brave. For two years I didn’t cry. I smiled and told myself everything was going to be okay. I told everyone that it’s fine, that Theo is so strong. I confessed that it was hard but tried to focus on the positive, believing we would get through it. AND WE DID.
On January 24th, 2022, Theo had his END OF THERAPY celebration at the hospital. When a patient finishes their therapy, they get to ring a big bell and have their picture added to the END OF THERAPY board in the main hallway of the clinic. Theo and I walk past that board every time he has an appointment. It is a massive collage, full of happy pictures of patients who have made it to the other side. As I walk past it, I look at it longingly. My thoughts have progressed from, “one day Theo will be on that board” to “almost there” to finally “he made it”. It’s like being inducted into the hall of fame. Now, when other families walk past that board, they will see Theo. My boy, in all his Spider-Man glory among the other smiling faces. I could not be more happy or proud.
So now what? Well, for starters Theo can go back to seeing his regular pediatrician for annual check-ups and routine concerns. The next time Theo gets, say, a rash (like he did on his hand about one month ago) we no longer need to contact his team at Children’s Hospital through MyChart with pictures and a description asking what to do. That’s what the pediatrician is for! Oh, but I love his team at Children’s Hospital. They are my security blanket. I know that part of the transition back to normal will be hard for me. But don’t worry. We are not saying good-bye. More like, “see you around”. As in, see you once a month for the next year. Then once every three months the second year. The third year is when they cut us loose and the long-term survivorship care team follows up with Theo once a year. Theo is presently having multiple tests done so his team can evaluate how his body has tolerated or changed as a result of the chemotherapy. He’s had an electrocardiogram, and echocardiogram, ultrasounds, and x-rays to check everything from his testicles to his bone growth and heart function. We will go over the results with Theo’s team within the next month. Theo’s immune system has been recovering at lightning speed. It’s hard, but I’m trying not to stress and worry every time Theo gets a cut or has a runny nose. He is a warrior after all. One day while riding his bike, he took a hard fall and cut up his knee pretty bad. It looked as though martial arts class was going to be a struggle. Turns out, it wasn’t. It was no big deal at all. I told Theo after watching him perform in class, “Theo, you crushed class today!” As cool as a cucumber, he responded with, “like eating a bowl of mashed potatoes.”
Theo was done with his treatment. Things were getting “back to normal” and Theo was feeling great! We had been waiting for this moment for SO long. The day when cancer was a thing of the past. The END OF THERAPY was here! It didn’t feel real. Thinking about what Theo had just been through, remembering the hardest days of treatment was like remembering a story. Did that really happen? Was that only two years ago? The memories and feelings are there but they are distant, as if from a terrible nightmare. I didn’t know what the end of therapy would feel like. People have been asking, “how does it feel now that Theo’s done?” My response was always a generic, “GREAT!” with a big smile. But it didn’t feel different at all at first. It just felt like another day because Theo had been feeling good and that makes us happy. I kept waiting for this change, this ah-ha moment of incredible euphoria. Like I was Fraulein Maria singing “The Hills Are Alive” in the beautiful Austrian Alps. Well, that never happened. Instead, I cried. All of a sudden and without warning…. at dinner with friends, while eating a croissant, while talking to my parents, when hearing a favorite song. Two years later…the tears came flooding back. The dam broke and the uncontrollable sobbing returned. Anything could trigger my tears to start pouring out of my eyes. Ugh, I felt like a mess. But sometimes change is messy. Sometimes we hold things in to protect ourselves and others. I had been holding those tears in for two long years and finally, I let them go.
As each day passes, Theo’s memory of this journey will become foggier. He’ll move on to go to school, meet new friends, and have different and fun adventures of his own. Our hope is that this journey with cancer will never EVER have to be repeated. But the imprint it has left in our hearts and minds will remain with us forever and remind us of the pain cancer causes. We will always be aware of the many families and children who are still going through it. Remembering that there are so many who are not as fortunate as we are. The world is full of suffering and pain but also full of GOOD! We know that because we received so much love and support from our friends and family. We see the silver linings, the good in times of bad. So now, let us use our health and good fortune to help others who are not as fortunate as we are. It’s that plain and simple. Spread love and kindness and it will come back to you. I promise.
“Let’s ride this baby” -Theo Avila (said just before body surfing a big wave in Mexico)
It’s not too late to make a donation on my personal fundraising page to the Leukemia and Lymphoma Society. I will be participating in the Big Climb on March 27th. Please join me! All donations go towards blood cancer research, education and patient services. This is a great opportunity to help others in need and give back to those less fortunate. Theo has climbed mountains to get through therapy! The Big Climb is but a tiny fraction of what cancer patients have to go through. This is our chance to show how much we care and fight for a cure!
Today is Friday, December 31st, 2021. That means there are exactly 12 days left of Theo’s cancer treatment. 12 days left of taking pills. 12 days until Theo is DONE WITH THERAPY and hopefully, done with this disease forever. Now, if that isn’t the best Christmas present ever in the world, I don’t know what is.
It feels truly amazing to have come this far, to be this close. Somebody pinch me, is this really true? Yes, and we could not be happier. It’s been a busy past couple of months preparing Theo for the end of therapy and the return to social life and school, aka “back to normal”. Theo has had two doses of the pediatric Covid vaccine. Theo is immunocompromised, which means his immune system has fewer memory cells. Therefore, a third dose of the vaccine is needed to help his immune system remember the virus and build up a defense against it. Theo is due to get his third dose on January 6th. Unfortunately, the CDC has not approved a third dose for immunocompromised patients under the age of 12. Say what now? This makes no sense to me. On one hand, I have Theo’s doctors telling me that Theo needs a third dose of the vaccine. No, it is not a booster. It is really a THIRD dose. But how can he? I am told he is not eligible! Fortunately, I have a smart friend, who is also going through the same thing with her child. She is awesome and someone I often rely on for recommendations, advice, or just to vent to about what we are going through. In this case, she has informed me that Theo’s doctor needs to send a letter to a specific vaccination clinic in order for him to receive his third dose. There, done! Thank you, friend. Theo has been looking forward to getting the vaccine for so long now. He was so happy to get his first shot! It is a big step in the direction moving forward, past disease and pandemic.
Wait, there’s more to celebrate still! Theo had his port removed!!! Finally, it’s done. It’s been months of us talking about it, planning for it, trying the IV in preparation to have it out, etc. I knew it would be a big deal, but I was not expecting it to feel this good! Like I’ve been hiking up a mountain with a 50-pound backpack on, and I finally reached the top and can put down the heavy weight. Luis and I are so relieved, so happy. One big stress, gone. The risk of infection and fear of Theo having a fever is greatly reduced. Theo is excited as well. The anxiety caused by the anticipation of getting poked in the chest to have his port accessed… gone. The fear of something hitting him in the chest and bumping his port… gone. Even having to see his bump and be reminded of the port and cancer… gone! The surgery was quick, only about 30 minutes. He woke up from the anesthesia very cranky, extremely emotional, and super hungry. About one hour later, plus a cheeseburger, fries, and milkshake, and Theo was back to feeling like himself again. Theo was instructed to take one week off from normal activity. We gave him Tylenol for the first 24 hours following the surgery and after that he was fine. The hardest part of recovery was trying to keep Theo from moving too much! He was feeling great just a couple of days afterwards and was tired of resting. He wanted to JUMP! RUN! PLAY! Well, now he can, and without thinking about his port.
Theo has been to the hematology/oncology clinic twice, for labs and a provider visit, since the last update. The first appointment was on Monday, November 29th. With surgery scheduled the following week to have Theo’s port removed, Theo planned for a peripheral poke in his hand for the blood draw. Theo arrived at the appointment well hydrated and with a healthy glob of numbing cream on both hands. Success! The assessment was that Theo is “clinically doing well with labs and exam appropriate to continue oral chemotherapy.” In other words, ALL GOOD! A pretty boring provider visit, but we like boring. We like uneventful when it comes to medical concerns. Theo’s next visit was one month later, on Wednesday, December 29th. Another uneventful visit. No major concerns, other than to discuss Theo’s third dose of the vaccine. That’s it. His next appointment is not scheduled until January 24th, 2022! But wait, what about the end of therapy? I was shocked to find out that Theo does not have an appointment on his last day of therapy. So, I asked his doctor, “What happens on the last day? What do we do?” It felt so anticlimactic to hear her response, “just stop taking pills”. Oh… that’s it? I guess my plan of exploding confetti and popping open bottles of champagne in the clinic is not happening then? Haha, no worries. We plan to celebrate with friends and family surrounding us. Yes, that’s the plan. (Date and Time TBD). The final countdown begins. 12 days…
Oh boy, what a Christmas we had!! According to Theo, it was “the best Christmas ever!” Tons of delicious food, loads of presents, and fun with family. But Christmas is not just a day. It is much more than that. It is the season of giving, loving, and celebrating. It is the feeling of magic and hope. It is the time of sacrifice and forgiveness. It is a smile from a stranger, a hug from a friend, an unexpected gift. It brings light, so that even during the darkest grayest days of winter, we have joy. In my opinion, Theo IS Christmas. His love and excitement of it all is extraordinary. It is so innocent and pure; it transcends all beauty. This year, we have so much to celebrate. We are home together, happy and healthy, and full of hope for the new year to come.
“While there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humour.” – Charles Dickens, A Christmas Carol
November 2021. It’s been one year and 10 months since Theo was first diagnosed with leukemia. One year and ten months of heart ache, tears, triumphs, fear, stress, and insane love. One year and ten months of (pardon my language) figuring this shit out. The therapy map, back pokes, hospital stays, the list of medications, going to the emergency department. So much has happened and we have learned (and are still learning) a great deal throughout the process. It’s been an overload of information! Do you remember it all? Don’t worry, this is not a test. It’s easy to forget all the details. I’ve had to go back to past blog entries to recall certain details several times. This blog has been extremely helpful in sharing the journey of events and our emotions. It has also been an effective way to inform and educate friends and family about Theo’s experience with leukemia. But I also hope this blog will serve as a diary of sorts for Theo to look back on in his older years. For this entire experience not to be just be a distant bad memory from his youth, but a reminder of his strength. A badge of bravery that he has earned and can be proud of. I hope that his enthusiasm for telling others about what he has been through stays with him throughout his life. After all, this is HIS story.
In case you have forgotten, here’s a quick review of some important bullet points to remember: Theo has Philadelphia chromosome positive acute lymphoblastic leukemia (ALL), diagnosed on January 9th, 2020. He has a power port that was surgically placed under his skin to receive chemotherapy. A blood sample is taken from his port site at every appointment. The Complete blood count (CBC) is checked at every appointment to evaluate overall health and measure levels of red blood cells, white blood cells, hematocrit, hemoglobin, platelets, and liver function. A CBC also detects the absolute neutrophil count (ANC), a measure of how strong the immune system is. Chemotherapy wipes out all cells good and bad, significantly lowering the strength of the immune system. Theo has completed the following phases of therapy: Induction 1A, 1B, Consolidation #1, #2, #3, Interim Maintenance, and Delayed Intensification… twice. Theo is currently in Maintenance phase. The last and easiest phase of treatment. Medications he is currently taking are Imatinib, Bactrim, Mercaptopurine, Methotrexate, and Zofran. End of therapy is January 11th, 2022. I know, I know. I told you all it was January 26th, but I was wrong! Theo started Maintenance on January 26th, 2021. At that time I was told that Maintenance phase lasts for one year. However, at Theo’s most recent appointment I was told that Theo’s therapy ends two years after his start date. Hey, I’ll take it! Even sooner than expected, so that makes us all very happy. Theo has roughly two months left of therapy. Soon, he will have his port surgically removed. What comes next? WE CELEBRATE!!!!
Not much has changed since my last update. That would explain why I have not written since September! Wow, how time flies. What have we been up to then? We’ve been keeping busy with work, life, and just doing typical six year old boy stuff. There is never a dull moment. Theo has two very wiggly dogs (the “pig” and the “wig”, as he calls them) to play with, do his lessons with, to run with at the park, and to be his audience when he plays the piano. Although the weather is not always the best for playing outside, we make it happen every day. Especially now that Theo is obsessed with basketball. First it was baseball, then soccer, now it’s basketball. Even though the ball doesn’t quite reach the hoop yet, he doesn’t care. He uses all his strength to throw the ball into the air towards the hoop as high as he can. Even after his arms tire out he will dribble the ball… for hours. It’s a perfect family activity, a favorite family sport. Luis and I met at a gym, Sound Mind and Body, and used to spend hours playing basketball together at the gym on the weekends. Theo is still doing online school and for the most part it is still a success (some days more than others). He will eventually go back to school in person and we know it will be so good for him. All the play time with Mama and Papa does not fulfill his need be with friends, kids like him. Whenever he gets to play with his best friend, Cameron, he transforms, like a new person. The energy, the excitement and happiness that explodes from his body makes all things bad disappear. It’s the best medicine for his soul. And let’s not forget Spider-Man! He never leaves Theo’s thoughts. He is everywhere all the time. The Spider-Man stuffies, the video game, the costumes, the movies, the books, the toys. He’s on Theo’s bedroom walls, his sheets, his clothes! Can you guess what Theo was for Halloween?? That’s right, Spider-Man!! So there you have it. The life of six year old Theo. Now, let’s move onto the medical update.
Day one of Maintenance, cycle four, was on Wednesday, October 6th, 2021. Theo had an appointment for labs and a provider visit. His blood counts were strong with an ANC of 1,300. His liver function measured to be a little higher than normal but not an urgent concern. In other words, no need to lower his chemotherapy dose just yet. Theo looked good. He looked strong, “clinically doing very well” as is stated in his assessment. It has been our ONLY hospital visit since the last update! Of course that doesn’t mean that everything has been perfect. There is always something to be concerned about. After all, he IS taking chemotherapy, medications that are saving his life but are also toxic to his body. We expect there to be side effects from the medications. When and how they will preset themselves is the big mystery. Like the rash that developed on Theo’s face and fingers in late September. It started out looking like eczema on his right and left cheeks. A few days later it had spread, red and bumpy all over his face and left hand. It was a little itchy at times but not painful. We took pictures and sent them to Theo’s team through MyChart. The rash was non-infectious in appearance and was likely related to Theo’s medications. We were advised to keep his skin hydrated and monitor for any changes. Fortunately the rash cleared about one week later. We also thought it was likely due to the medications. This is not the first time this has happened. Shortly after Theo started taking Imatinib, back in January 2020, he developed a rash all over his stomach and back. It lasted about two weeks and then cleared up.
Even more alarming was the morning Theo woke up with tachycardia. I was away from the house that morning and Luis was in his office working. Luis ran to Theo’s room when he heard him crying. Theo’s heart felt like it was going to explode out of his chest it was beating so hard and fast! He was too dizzy to even sit up. Theo was scared. Luis, also terrified, helped Theo relax. Just like when Theo had his acute allergic reaction in the hospital, Luis was there to comfort him. Was it a nightmare? A fever? Infection? Nope. Theo did not have a fever. After some tears, hugs, and snuggles with Papa, Theo recovered and continued his day as if nothing had happened. Without a fever or any other symptoms there was no need to see the doctor. Again, just monitor and call if anything else unusual happens.
There are other side effects that we are more familiar with, nothing we haven’t seen before. Theo experiences quite a bit of cramping. It can be as small as a hand cramp from holding a pen or as bad as a Charlie horse. You know how those are. That sudden acute pain from your muscle locking up. All you can do is hold your breath and grit your teeth until the muscle finally relaxes. It doesn’t matter how much water Theo drinks. He never seems to be hydrated enough. A warm pack or cloth is the only thing that seems to help, but by then the pain is already there. Occasionally Theo will just have random and very sudden pain in various places in his body. Theo will be running down the street and then stop dead in his tracks, grabbing hold of his hip, leg or ankle. It comes and goes randomly. We stop, rest, hydrate, and monitor. Luis and I are constantly telling and reminding Theo to drink water, which he does very well. I wouldn’t be surprised if Theo ends up gluing his water bottle to his hand after this experience. It’s like adults and our smart phones… can’t go anywhere without it!
Nothing gets my armpits sweating more than Theo getting sick. A rash, a fever, or an unpredictable or inexplicable pain gets my heart racing and stomach turning. Not now. No more. He’s had enough. He is doing so well now and we want it to stay that way. That’s the thing about all the medications Theo is taking. All the possible horrible side effects. They are like termites hiding in your hardwood floors, slowly eating away at the wood without you even knowing until the floor collapses beneath your feet. There is no way to prepare for any of this. It’s like taking your first new born baby home from the hospital. I remember how afraid I was to take home Theo, this tiny helpless human, and be responsible for his life! The “what ifs” were endless. What do you do? Just do YOUR BEST. Listen to your gut, follow your heart, trust your instincts. Remember what Theo’s doctor said, “there is no right or wrong answer”. We are all doing the best we can with the knowledge we have. It’s okay if we don’t have the answer to everything. ASK QUESTIONS. Yes, we make mistakes, and hopefully we learn from them. Try not to dwell on what could have or should have been done, but what we can do moving forward. Stay positive!! Knowing that for every bad moment, there are at least one billion wonderful moments. These are all the lessons I am still learning and have to remind myself of each and every day. I cannot let myself worry so much about what might happen. Instead, appreciate what we have. An incredibly sweet, sensitive, smart, strong boy. My angel. Theo is our reminder of all that is beautiful in this world. He has learned so much through pain during this process and to be eager to share his story is his gift to the world.
“The Pig and The Wig” A poem about our dogs, Manu and Maggie, by Theo Avila
The Pig and the Wig. The Pig and the Wig. The Pig and the Wig want to be big.
The Pig and the Wig. The Pig and the Wig. The Pig and the Wig want to eat a fig.
The Pig and the Wig. The Pig and the Wig. The Pig and the Wig like to dig.
The Pig and the Wig. The Pig and the Wig. The Pig and the Wig dig a big fig.
Game shows. I used to watch them at Grandma Ethel and Papa Ted’s house with my siblings when we were kids. In the morning, it was The Price is Right and Family Feud. At dinner time, we would all find a seat in front of the tv and watch Wheel of Fortune, followed by Jeopardy, while eating our food. We knew exactly what time they were on and looked forward to watching them together, always rooting for a favorite contestant and shouting out answers. It was a thrilling race to see who would win or solve the puzzle first. Right answer? You just won the Showcase Showdown! Wrong answer? You lose it all. Sometimes it feels like this journey through cancer is like being on a game show. There have been countless times we have asked ourselves, what do we do? Do we take his temperature again? Do we call the doctor? Do we give him more Miralax? Do we try to insert the NG tube again? With every question comes the horrible thought that if we do not choose correctly, we could make things worse or create a disaster. Like the contestant that “loses it all”. That may sound dramatic, but when you are dealing with a life threatening disease, everything IS dramatic. The most recent dilemma that we have struggled with is deciding whether or not to let Theo go back to school in person. Back in June we had decided he would return to school. Back when Covid cases were slowing down and the outlook was much better with the plan of people getting vaccinated. Hah… that didn’t work out as well as we thought, now did it? Covid continues to spread like wild fire among the unvaccinated and now we have a dangerous delta variant to deal with. The point is, things have changed since June. So Luis and I asked ourselves, do we feel that is is safe for Theo to go to school in person? Safe to be around other kids whose families are not vaccinated? Safe for Theo to go to school with kids whose families do not wear masks or practice social distancing? What should we do??
The answer is… there is no right or wrong answer. The answer is, do what we, Luis and Kelly, feel is BEST for Theo. No one can answer that for us. So it is up to us, Theo’s parents, to decide. We decided to keep Theo home and do online school. At least for now. We also withdrew him from the soccer club this fall. Kids are not required to wear masks while playing outside. When you have a group of six year old boys chasing after a soccer ball, social distancing doesn’t exist. Would Theo be safe playing soccer? Safe at school? Sure… maybe. But we are not willing to take that risk. Why add that stress if we do not need to? Why take that chance? This is what we know. Child cases of Covid are higher than they’ve ever been. Cancer patients that get Covid take longer to recover and can test positive for up to four months. Hospitals are FULL. We are also entering flu season, not to mention all the other viruses out there waiting to make their return in the colder months. Theo getting sick is the LAST thing we want right now. Theo is almost done with treatment. He is so close! Have you marked your calendars?? January 26th, 2022. That’s right. END OF THERAPY!!! His immune system will recover and then we will be ready for him to go back to school. Hopefully he’ll be vaccinated by then, too! Until then, that is our decision. We will be ready to move onto our new “normal” soon. After all, there will always be viruses, bugs, germs, flu seasons, and probably more Covid. Difference is, there won’t always be cancer.
Is it September already? Wow, it really has been a while since the last update. We’ve just been a little busy with some house projects. Building a fence, remodeling a bathroom, building Theo’s play structure, building furniture… just to name a few. Don’t worry, we’ve been squeezing in fun every minute we possibly can. Today we are taking a break from projects so I decided to use this time to write! You’re probably wondering how our five star, all inclusive, four week vacation from the hospital was. It was FANTASTIC. It really gave us time to enjoy summer without thinking of cancer other than the daily temperature checks and pills. Theo has been healthy and happy. We returned to the hospital on Friday, August 13th for labs and a provider visit. Theo’s blood counts were strong (ANC 1,800) so his team increased his dose of Methotrexate to 100%. Two weeks later, on Tuesday, August 24th, we returned to the hospital for another provider visit and his last back poke! Your initial reaction might be, “hooray, that’s great news!” However, not for Theo. He was so sad that it was his last one. As you all know very well, he loves back pokes. So we made this last one special by inviting Theo’s two Spider-man stuffies, aka his “brothers”. Party in the sleepy time room!! It was a great success, especially because Theo’s favorite anesthesiologist, Dr. Carl, was there with him.
During his provider visit on August 24th, I spoke with one of Theo’s doctors about our concerns of Theo returning to school. Some people are so articulate, so communicative and well spoken. That’s her. Giving me the facts while being sensitive and considerate to my emotions and concerns. She is the one who reminded me, there is no right or wrong answer. I think Luis and I already knew that, it just helps to hear someone you trust and respect say it. Theo’s doctors are truly amazing. We appreciate them more than they will ever know. As for the rest of the visit, Theo looked great! His blood counts were strong again, ANC 1,243. His dose of Mercaptopurine was raised to 100%. So now ALL CHEMOTHERAPY is at 100%. GO THEO!
The next and most recent appointment was on Tuesday, September 7th, for labs and a provider visit. Theo’s ANC was 1,500. Excellent. All other blood counts were good as well. This means that Theo is staying strong even with his chemotherapy dose at 100%. There are no signs of Theo’s body slowing down. Not one bit. Theo is an incredibly powerful six year old boy. It goes without saying just how proud we are of him. He has worked so hard for so long. He just keeps on going and going. An unstoppable force. I love listening to him talk to his class and teacher during his Zoom meetings about his cancer. Explaining how the needle goes into his port and how much he loves the sleepy milk. Like he’s talking about something as simple as what he ate for lunch. Theo will return to school… eventually. Fortunately, Theo has wonderful friends and family that he can play and socialize with safely. And a very silly mama and papa who will always play, wrestle, tell jokes and stories, and have adventures with him. We just finished reading Charlie and the Chocolate Factory. I do not know who enjoyed it more… me or Theo. Each night Theo could hardly wait to see who would get in trouble next, and what the Oompa Loompas were going to sing about. Theo is now of the age where we can enjoy more books and movies together, which is super fun. Online school isn’t so bad either. We try to make it as fun as possible. It’s not easy to sit with your learning coach (that’s me) for five hours every day doing lessons, but we’ve got the hang of it. He also started piano lessons with Mormor. He loves it! Theo plays the piano for the dogs every night before they “go to bed”. With Theo in school, Luis busy as always with work, and the never ending house projects, I’d say there’s plenty going on in our day to keep us busy. But never too busy to go kayaking on a beautiful summer day!
So what’s next? Theo’s doctors strongly recommend that Theo get the Covid vaccine as soon as he is eligible, which could be soon! We can hardly wait!! (Remember, we do not say the word “can’t”.) The next appointment is scheduled for Tuesday, October 4th. You may recall that Maintenance phase has four cycles. Well… October 4th is day one of cycle four. Wow, the last cycle! It feels like reaching the third trimester of my pregnancy. My belly so big, body and mind transformed, so excited and overcome with joy with what awaits, I just wanted to get on with it and have my baby already! Cycle four, here we come, full speed ahead!
Sometimes I wish I had a crystal ball that I could look into and see the future. Ha, and how about a genie in a lamp and magical flying carpet while we are at it? Of course that does not exist so I hope for the best and stay positive. We are definitely looking forward to getting back out there, traveling and going to school. Beyond that, we just don’t know. We don’t know what kinds of side effects from chemotherapy Theo will have to live with or haunt him later in his life. The end of therapy does not mean the end of everything. We don’t know what life beyond therapy looks like for Theo. We don’t know what the world looks like 10, 20, 30 years from now! But why worry about the things we have no control over? Control the things we can, like our attitude, our actions, how we treat each other and the planet. No matter what your future may be… be safe, have fun, and smile.
“We are the music makers, and we are the dreamers of dreams.” -Charlie and the Chocolate Factory, by Roald Dahl.
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
As a mother and parent of a child with cancer, this is what I MUST believe. No matter what happens, no matter how bad things look. When Theo gets hurt or is scared and starts to cry, my first response is to wrap him up in my arms and comfort him. It is a natural reaction to want to nurture and protect your baby from the moment they become a part of your life. We will do anything for the helpless little being who is in need of our love and care. We protect the ones we love. We do our best to keep them safe and happy. When Theo used to puke out his feeding tube and freak out before I put it back down his throat, I would smile and tell him, “everything is going to be okay”. When Theo was having an acute allergic reaction in the hospital and the entire 7th floor of the Cancer Care Unit came blazing into the room for the emergency response, Luis looked Theo directly in the eye and calmly said to him, “You will get through this. I know you will because I am your papa.” Exactly what Theo needed to hear, the comfort he needed. It is our job to keep Theo safe and nurse him back to health. Not just physically, but also mentally. We have a responsibility to be there for him emotionally. It has been one of the hardest, most challenging parts of all of this. For Luis and I to wake up every morning, ready to fight, ready to be brave. Showing our best even though we are numb inside. To breathe and remain calm while Theo is screaming in pain, scared, sick, angry, sad, or nauseous. But if we are to stay grounded through the storm, then we need to believe everything will be okay. We don’t back down. We don’t give up. We are in this together.
Right now, everything IS okay! Theo is feeling great. If it wasn’t for the daily oral chemotherapy, I could easily forget that Theo is being treated for cancer. But alas, every day at 7pm comes that sneaky reminder and we have to tell Theo, “time for Zofran”. Then come the Imatinib pills, Mercaptopurine and other meds one hour later. Remember “medicine time”? Remember how difficult it was and how much anxiety it created? Ha! It’s SO easy now!! Theo takes his medicine like a champ, no hesitation, no complaining. Not only that, he enjoys people watching him take his meds. When we stay at Mormor and C’s house (my parents), he asks them to watch so they can see how easy it is for him. When we are in our front yard on a sunny evening and the neighborhood kids are playing outside, Theo invites them to watch, first explaining which medicine he is taking a why. Showing off a little? Sure, why not?! We are so proud of him and he should be proud of himself. He tells them everything. About his most recent visits, getting his port accessed, the names of all the medicines, going to the sleepy room… ALL of it. I dare not interrupt. For if I do, I will get a scowling look from Theo. It is not my story to tell. It is his life, his body, his story, his friends. I love seeing his confidence grow in a new neighborhood around new people. I also LOVE that he can transform his trauma into educating his peers. Maybe Theo should start a blog??
Presently, Theo is still taking only half of his original dose of chemotherapy. In the last three visits, his blood counts have been in range since reducing the dose. Here’s what happened in those last three visits. We returned to the hospital on Tuesday, May 18th. First for physical therapy, then labs and a provider visit followed in the Hematology/Oncology Clinic. Easiest day EVER. Physical therapy was basically 45 minutes of play time with cool new toys. Still no ankle pain and his strength and flexibility are better than ever. Then we saw his doctor. Short and sweet. We didn’t have much to discuss, which, of course is a good thing. Overall, Theo is doing well. He still had an intermittent wheeze in his left lung, most likely related to seasonal allergies, so we were instructed to continue with Albuterol. We returned two weeks later on Tuesday, June 1st for labs, provider visit, and a back poke. Even better! I don’t think I need to emphasize Theo’s excitement for the sleepy time room again, do I? Well, in case you were wondering… it was glorious. Also, his lungs sounded clear and we were told he could stop the Albuterol, finally. But at the first sign of ANY respiratory symptoms, Theo must start using it immediately. His weight gain is appropriate at this time, however, his height has not changed much in the past year. Apparently, kids growth in height will often be delayed during treatment and then spike back up as soon as chemotherapy is done. Something worth noting that I was not aware of. The third and most recent visit was on Tuesday, June 15th. Day 57 of Maintenance. Theo went in for labs and a provider visit. His ANC was 1,666, a slight increase from past visits. Since it was above 1,500, his team of doctors and researchers decided to increase his Mercaptopurine dose to 75%. That’s it. All other chemotherapy remains at 50%. Everything else looks good. Theo is doing well. So there you have it. Nothing else happening. Pretty boring, right? Yes. And we love it.
In other news, Theo is a kindergarten graduate!! He is officially a big first grader this fall at Gordon Elementary in Kingston. Crazy, right?! I can hardly believe it. Theo completed a full year of kindergarten while going through some of the hardest treatment and transitioning into Maintenance. Long hospital visits, feeling icky from his meds, and days of having low energy did not slow him down one bit. He learned how to read and how to write. He had fun doing science experiments and solving story problems using addition and subtraction. He explored the world and the creatures in it, kangaroos, pandas, insects, and the human body. He worked hard at his school lessons and got to participate in kindergarten like the big five year old he is. That is truly one of the few silver linings of Theo having cancer this year. No one was at school, no one was going out to have fun, no one was going to the aquarium! He really didn’t miss out on much. He was learning from home and having Zoom meetings just like everyone else. Wait… did I just say “big five year old”? Correction. I meant BIG SIX YEAR OLD!!! During the time I was writing this blog entry Theo had a birthday. Theo turned six years old on June 17th and we celebrated with a big party at the beach with family and friends over the weekend. Then there was Father’s day the next day. So much to celebrate, so much joy, so much cake! Happy Father’s Day to my honorable dad, my lifelong teacher and guide. Happy Father’s Day to my husband, Luis. The man who does anything and everything for Theo and me. El jefe, my love, and my best friend. Last but not least… Happy 6th Birthday to my hero, the light of my life, Theo.
June 17th, 2021 was no doubt, a spectacular day. We started the day eating blueberry pancakes in animal shapes, requested by Theo. Then he opened presents: a new Spider-Man t-shirt, some orange gooey slime, and a camera. Theo loves taking pictures of nature, so now he can use his own camera instead of filling up the memory on our phones. Next stop was the playground so he could go on the zip line and monkey bars. Followed by a picnic lunch at the beach and some camera practice. The next activity may surprise you. On the top of Theo’s wish list for the day was getting a haircut. He gets so many compliments on his new hair now when we go to the hospital. All of the nurses stop by his room to see how handsome and different he looks now that all of his hair, eyelashes, and eyebrows have grown back. He looks completely different! Theo now pays attention to his hair, asking for hair product so he can style it. So off we went to the barber shop. The first haircut since his hair grew back. No one was allowed to touch his hair afterwards. He wanted it to stay perfect. But the fun didn’t stop there… back at home we had a water balloon fight, ran through the sprinklers, then played with his new slime. His dinner request was steak and mashed potatoes, which he helped prepare with Papa Chef Luis. Before bed, we squeezed in a little more fun by having a dance party and pillow fight while dressed up as mummies (his idea of course). What a day. SO much silliness, smiles, and fun. Last year Theo had barely enough energy to get dressed and wave to friends that walked by. To see Theo as happy as he was on his big day, makes our hearts explode.
In the darkest days of Theo’s treatment, when he was on steroids and feeling his worst, he was a different person, unrecognizable. Theo was swallowed by a beast. You could see a glimpse of his sweet old soul through his eyes, trying to get out, trying to communicate and take back his body, like a prisoner. We knew steroids would change him. We were told that his chemotherapy treatment would be intense. But we did not see THIS coming. We were completely unprepared and mentally thrown into shock and horror by what was happening. Theo tried his best to be himself and be calm. And that’s when it began. “I’m sorry”. My boy. He knew he was not himself. He knew he was angry, irritated, and frustrated, but he didn’t know why. He didn’t want to feel that way but he couldn’t stop it. So when he yelled back at us or cried, or complained, he would immediately follow with, “I’m sorry”. Just like during Consolidation #2. I wrote of a time when he was yelling at me because he didn’t like the chlorhexidine wipes. I had enough of the screaming and dropped the wipes, told him I was done and he could do it himself. That’s when he said, “I’m so embarrassed. I’m sorry Mama, I just want to feel normal”. It broke my heart. He had nothing to be sorry for. He has carried that habit with him ever since. Immediately apologizing even though he has done nothing wrong. When he spills water out of the bath tub, gets crumbs on the floor, or forgets to put his toys away and leaves them on the living room floor. The first thing he says is, “I’m sorry”. He has NOTHING to be sorry for. We all make mistakes. Have fun, live life, and we’ll clean up the mess as we go.
What can I tell you? I want to tell you everything. I want to SHOW you everything. All that Theo is, his spirit, his magic, his unconditional love. This hardship has evolved Theo years ahead of his time. He is so patient. He is empathetic and kind. He is a healer, a lover, and my angel. My breath of fresh air when I am stressed and frustrated. He gives us comfort. When I am stressing out about something, Theo pats me on the shoulder and tells me to take a deep breath and relax. And it works. I always feel better when he comforts me. If Theo can still smile and laugh after all that he has been through, then so can we. Turns out, it doesn’t matter how old you are, how tough you are, or how strong you are. We ALL need comfort in times of agony and despair. In times of intense fear and panic, or when the sharp blade of pain hits. We need Comfort. Security. Hope. We’ve all been there. We all have some pain, anxiety, or fear. Sure, every situation IS different, but the feelings are similar. It’s a part of us, imprinted in our bones, like a fossil waiting to be discovered. I saw a mother and her child in the clinic waiting room one Tuesday morning after Theo and I checked in for his appointment. I know this woman. Her child had just finished Delayed Intensification. Her child was bald and pale, her energy and light faded. It is painful to remember Theo when he was in that phase. He was so recently there, too. I wanted so badly to hug the woman, hold her tight and tell her it was all going to be okay, that she is amazing and strong and her child is a warrior. I remember being that mom in the waiting room, seeing other kids who looked healthy while Theo was near puking in his stroller and thinking, “when will Theo feel good again?” And here we are. So what do you believe? What are you going to do today? Try this: go for a walk, talk to someone, listen to music, SMILE. There is a song that I love. It makes me happy and I tear up every time I listen to it. It is called, This Year, by The Mountain Goats. The next time you find yourself in a tough situation or you’re having a bad day, remember… everything is going to be okay.
“I think there is a hero in all of us” – Spider-Man
The elephant eats. The elephant eats. The elephant eats to see some beets. He eats some beets. He eats some beets. He eats some beets to not eat meats.
In case you didn’t know, Theo is the BEST rhymer of all timer. He came up with this poem one day after hearing me read the poem, “The Bear Went Over the Mountain”. Are you familiar with that one? “The bear went over the mountain. The bear went over the mountain. The bear went over the mountain, to see what he could see. The other side of the mountain. The other side of the mountain. The other side of the mountain, was all that he could see.” Theo gave me the most puzzled look and then just started to laugh. “Really?!? That’s it?” He said through his laughter. He figured if someone can make a poem that simple, so could he… and better. Theo has heard me recite many silly poems for his online language arts class. He can hardly believe that a real poem can be so silly and sometimes not make any sense at all! He often criticizes them for not rhyming that well either. Like in “Ladybug Ladybug” the words “home” and “gone” do not rhyme! At first, I did not see why I should bother reading some of the poems, just because of how nonsensical they are. Who wrote this? Why is this still being taught today? What does this even mean? Aren’t there other poems we can teach our kids? But not Theo. He finds the poems so funny. The more illogical and absurd the poem, the better. It has turned into a fun game for him to create a funnier, better rhyming poem than the one I read to him. Now that’s what I call fun learning!
So where were we? Oh yes, back in April. It’s time to play catch up! Starting with Theo’s back poke on Tuesday, April 20th. As usual, the first appointment is for labs, aka a blood draw to check blood counts. Then a visit with the doctor to go over the counts, review Theo’s chemotherapy and plan, ask questions, and address any concerns. The last appointment of the day is (fingers crossed) a lumbar puncture to receive intrathecal methotrexate, aka back poke. I’m so glad Theo loves getting back pokes. Otherwise days like these can be very long and slow moving. There is a lot of waiting time between the appointments. Add that to not being able to eat or drink and that can make for one cranky kid! Theo, however, is always in a great mood. He can barely contain his excitement for the sleepy time room. Shouting to every nurse that walks by about it and busily preparing Bobo and his stuffies for the sleepy milk. Theo is such a delight. He has a thoughtfulness about him that runs so deep it radiates like the bright sun shining on a blue bird day.
Well folks, it looks like the port is staying in for a while. Theo made the decision to stop trying the hand pokes. He prefers to get his port accessed. He says it is much easier for him because he is used to it and it doesn’t hurt. We completely understand of course. So there you have it. He has agreed to give it another try later, maybe in the next couple of months. Although, his port will come out no matter what in January 2022, when his treatment is complete! That’s only eight months away!!
So on with the labs and provider visit… Theo’s lungs sounded much better, however, his doctor could still hear some wheezing in his right lung. We were instructed to continue using the albuterol inhaler until ALL signs of a cold/cough are gone and his lungs are crystal clear. His ANC and hematocrit looked good, but his platelets were low, just above the threshold at 58 thousand. We were instructed to return in one week to check platelet levels and if needed, receive an infusion of Immunoglobulin G (IgG). Everything else looked great! There was no pain or other concerns to report or discuss. Just to make sure he was okay for anesthesia in the sleepy time room, Theo’s doctor asked the anesthesiologist to listen to Theo’s lungs. Dr. Karl has been the anesthesiologist for every single one of Theo’s lumbar puncture procedures. We LOVE her. She is Theo’s favorite doctor (just confirmed). Dr. Karl and Theo get along so well. In fact, when she came into the room to listen to Theo’s lungs, they got distracted having so much fun that the nurses had to come looking for her and pull her back into work. She cleared Theo to get a back poke, which, we were all very happy about.
On Friday, April 23rd, I received a call from Theo’s doctor. His IgG level was at 257. An infusion is recommended for levels below 400. So on Tuesday, April 27th, Theo was back in clinic getting an infusion of IgG. It is just like getting blood or platelets. When receiving blood product, there is a risk of having an allergic reaction. Therefore, Theo took Tylenol and Benadryl prior to the infusion. The appointment in total lasted about three hours. We were also informed that Theo’s platelets had dropped to 42 thousand. A hold was placed on all chemotherapy, except Imatinib, for one week. Theo would have to return in one week for a lab visit to check blood counts again. His doctor told us that since Theo had already been on a chemo hold for three weeks earlier in Maintenance, his chemotherapy dose needed to be reduced. The following Tuesday, May 4th, Theo returned for a lab visit with his Papa. It had been months of Theo asking for Luis to go with him to his appointment. Unfortunately, only one parent is allowed to be with the patient during appointments. Luis is extremely busy working full time and more. When Theo was admitted to the hospital, Luis would do his best to come to the hospital and give me breaks so I could leave for a few hours. Since I am not working, my job is taking care of Theo. Taking him to his appointments whenever they need to happen and stay for however long is needed. I have the ability to drop whatever I am doing to rush to the hospital with Theo. Luis does not. But this time Theo was begging for Luis to go with him. (No hurt feelings here). Theo was so proud to show his Papa how brave he is when he gets his port in. So excited to show his Papa how the appointment works. It felt weird not going with Theo, like I was missing out. But I love that Luis was able to be there with Theo this time. They are mirror images of one another. My lovies. Those two old souls are my everything. Fortunately, Theo’s platelets have recovered. The current plan for Theo is to continue with his chemotherapy but at only half the dose. Also included in the plan… TO HAVE FUN. I think we can handle that. With two dogs, a beach two minutes away, a love for nature, and a wild imagination, Theo is having no problem at all having a good time.
Tempus Fugit. That’s Latin for “time flies”. Grandma Ethel used to joke that it was one of the few Latin phrases she remembered from school. Wow, time DOES fly though! It was only four months ago that Theo still had his feeding tube in. Four months ago Theo was still so weak. Four months ago Theo had no hair. I don’t even remember what Theo looked like four months ago! He is a completely different person today than he was back in January, inside and out. It’s amazing how much he has changed in such a short period of time. Looking back four or five months at previous blog entries, it feels like it was years ago. Last December Theo spent 14 days in the Cancer Care Unit. Today, Theo is playing at the beach, climbing rocks, and doing hand stands. How can this be? Where is my sadness, my anxiety, my fear? I am like a kid who used to be scared of the boogie man hiding under my bed. Always afraid that something bad was going to happen. Waiting for the boogie man to come out and attack at any second. No. Not today. The only sound that wakes us up in the dark is the hooting of the night owl. But this is not the end. There is no end to this fight until there is an end to cancer. I dream of the day that this is all just a bad distant memory for us and Theo. And even when that day comes, we will continue fighting for ALL CANCER PATIENTS in the battle against cancer until we will reach glorious victory!!!!
*You can help in the fight against cancer! Join me on Saturday, May 15th, in the virtual Big Climb. Or make a donation to the Leukemia and Lymphoma Society to help fund cancer research. Please visit my personal fundraising page at http://www.llswa.org/goto/TheoMyHero We are in this together!
“Today is your day! Your mountain is waiting, So… get on your way!” – Dr. Seuss