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.”
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
A wise and wonderful friend of mine recently gave me a very inspiring and heart warming birthday gift. The reminder that I have so much to celebrate. To think of where I am today compared to last year at this time. It is so true. There has been so much change, so much worry and stress, that most days I forget to appreciate how much happier life is today. It was a beautiful reminder to stop and think about how far along this journey my family and I have come. To remind myself that while change can be painful and exhausting, it can also be marvelous and truly rewarding. Our world is changing every second. We don’t always feel it, we don’t always see it. But we know that every day is a new day and unlike any other. I catch myself more often staring at Theo in awe. Trying to record his movements and expressions in my memory so I never forget his pureness. I want to remember him at every stage of growth before he changes again. When did he get so big? Funny how that question never gets old. You notice that? As a kid, I heard it all the time. “Wow, look how much you’ve grown!” “Well, duh”, I thought. Of course, kids get bigger! People don’t stop growing or changing just because you don’t see them! Now, as an adult, I catch myself saying it all the time. No matter how silly or predictable it sounds, that question comes flying out of my mouth before I have the chance to hold back and recover with a more witty, unique observation of my friend’s fast growing daughter. But really… when did Theo get SO BIG?!?!
On Tuesday, March 16th, Theo got his back poke, hooray! His lungs were crystal clear. The cough was almost gone. He was still clearing his throat quite a bit, especially in the morning. His doctor told us that he should continue Cetirizine daily until the end of summer. There may likely be an allergy component to his cough, which is why it was lingering, and the allergy medicine would help with that. The Albuterol was no longer necessary since his lungs were clear. His blood counts had also recovered so he was instructed to start all oral chemotherapy again. Theo’s immune system had made a comeback! Wait… what’s this? An ear infection in his left ear?? Oh brother. Well good thing his doctor caught it early, before Theo had a chance to notice it. Theo received IV antibiotics that Tuesday and the next day in clinic. Way better than having to take a 10 day course of antibiotics at home. The ear infection cleared up faster than you can say “ear wax” 10 times clearly in a row. Go on, try it. It’s harder than you think!
After Theo’s appointment on Wednesday, March 17th, we headed back to Kingston. For the most part, Theo was feeling great. Full of energy and smiles. He is such a positive, happy, silly kid. Even when he is feeling sick he still manages to make jokes and smile. We were not due back to see his doctor for almost five weeks! Wow, that’s a long time. Well, we lasted two weeks. We had some concerns that needed to be addressed. First, Theo was still coughing up junk in the mornings. We didn’t stress about it too much at first, knowing his lungs were clear. Theo was also constantly clearing his throat throughout the day. We made an appointment for Tuesday, April 6th. His doctor took a good listen to his lungs. His once clear lungs were making music again! They had filled up with fluid after only two weeks of not using Albuterol. WHY? Why is it so hard for Theo to shake these viruses? Theo may be in maintenance but he is still taking many medications that purposefully suppress his immune system. Therefore, his immune system is not as ROBUST. It is not working at its full capacity. Immunoglobulin G (IgG) is an antibody that helps protect our bodies against bad bacteria and viruses. Theo’s doctor told us that if Theo’s IgG levels are low, he may be a good candidate for a transfusion of IgG, thereby giving his immune system a boost without changing the dose of his chemotherapy meds. Presently, Theo is back using the Albuterol inhaler.
The other concern that drove us to make an appointment for that Tuesday, April 6th, was some ankle pain Theo was having. Theo is hard to slow down. If Theo is not jumping off furniture or doing his wild Spider-Man moves, something isn’t right. We can usually tell how well Theo is feeling by how active he is. He does not easily complain of pain or feeling unwell. For him to speak up about it means it must be serious. Starting the morning of March 17th, Theo complained of pain in his left ankle. It was completely random, while he was sitting up in bed. It hurt to walk initially, but fortunately the pain did not last long. By the following week, Theo was reporting sudden and random pain in both ankles and his left hip. The pain was great enough to stop him in his tracks, mid run. It was so unpredictable and there were no obvious signs visible to our eye or memorable events where Theo had injured himself. The ankle pain was becoming more frequent and therefore a major concern.
Theo’s doctor had some ideas of what could be happening. One likely cause of the ankle pain could be from long term steroid use. Steroids, when taken for along period of time, can cause avascular degeneration of the joints. In severe cases, kids have needed joint replacement! Wow, the lava in my stomach was bubbling inside me as I listened to the doctor explain all of this to me. But before we went any further into this horrifying nightmare, the doctor needed xrays taken of Theo’s ankles, knees, and hips, to see if there was any abnormal growth in those joints. Phew!! Good news. The xrays showed NO abnormal growth, nothing abnormal at all. Therefore, the pain is likely a side effect of our favorite (haha) drug, Imatinib. Studies show that 30% of patients taking Imatinib experience random musculoskeletal pain. Unfortunately there is not much we can do at this point but just monitor and treat the pain as needed. Presently, Theo is not having ankle pain. Nor has he needed any pain medication. His next appointment in on Tuesday, April 20th, to check blood counts, see his doctor, and as long as his lungs are clear and he’s not coughing too much, get a back poke.
Before I continue, I owe you all an apology. I made a mistake. In my last blog entry I told you that numbing cream makes the veins shrink, which makes them more difficult to access. That is NOT true. Numbing cream does not effect the veins at all! HYDRATION is key. If the veins are hydrated, they will be more visible and easier to access. If the veins are not hydrated, they will “fall asleep” and become flat. So, in order for Theo to have a successful poke in his hand for a blood draw or IV, he needs to drink a LOT of water. Unfortunately, sedation procedures that use general anesthesia, aka back pokes, require the patient to be NPO (no food or liquids six hours prior to the procedure). Theo drinks as much water as he can the night before, but he is not allowed to drink anything, not even water, in the morning on the day of the back poke. The nurses are so incredibly kind, patient, and gentle. They tried to start an IV in Theo’s hand on Tuesday, March 16th, but his veins were too flat. Again, it became too painful to keep searching for his vein with the needle, so they ended up accessing his port. Accessing his port was so fast and easy compared to starting an IV in his hand. It makes me think, is having Theo’s port removed such a great idea after all? Now I am not so sure. Yes, having the port removed would be amazing, why? There is lower risk of infection (because no direct line to his heart) and also, Theo could play freely without having to worry about hitting the bump under his skin and causing pain or damage. But what happens if the nurses have trouble accessing the veins in his hands and there is no port to access as a backup?? Oh brother, then we’d really be in a pickle. Theo’s doctor’s advice was this: keep trying IV access through the hand. If it works more consistently, then we can have the conversation about removing his port. Bottom line, there is no rush. We have time to keep trying and see how it goes. There is no “better” way to do things. Whatever Theo is more comfortable with. OK, it’s settled, that’s what we are going to do.
On Tuesday, April 6th, Theo prepared for another poke in the hand, Theo drank water non-stop the night before his appointment as well as the next morning. I was hopeful that this time was going to work. Unfortunately, to our great disappointment and surprise, Theo’s veins were too flat. Really?!? Unbelievable. How could that be, after all the water I had seen Theo drink in the last 24 hours? The nurse asked Theo if he wanted her to try his other hand or just access his port. With a shrug, he said, “port I guess”. At this point in Theo’s treatment, it is a non issue. After everything he’s been through, after all the pokes, the nausea, the pain, the icky tasting medicine… why overthink it? What’s the point in worrying about something you cannot control? Just do what you can and move on. We’ll keep trying, but if it doesn’t work, then that’s OK. Moving forward. As Theo will often say now, “tomayto tomahto”.
What have we learned? ASK QUESTIONS! But there is not always a straightforward answer for every question, every ache, and pain that Theo experiences. We believe in and trust Theo’s doctors, their plan, and their research. We are incredibly fortunate that Theo is being treated at one the best hospitals in the world for treating leukemia. Seen by some of the most knowledgeable and experienced doctors with access to millions of recourses. Sometimes the path for treatment is clear and straight. Other times it has twists and turns with layers of thick fog. Don’t forget, most therapy maps are part of a clinical study. And through those studies, researchers and doctors learn how to treat better and more effectively. It is an ongoing process. It is the necessary journey to one day finding a cure.
Sometimes Theo is feeling so good and looking so good, we forget that he still has cancer. I mean, this kid is taking chemotherapy every day! Toxic pills that are killing his insides and causing all sorts of bizarre uncomfortable side effects. If I was taking all those meds, I don’t know how I would feel or if I’d be handling it all that well. It is finally spring time. The sun is warmer and fun awaits outside. Does Theo want to go outside and play? Of course he does! But on the days he does not and would rather be cozy on the couch under a blanket, well then, he should. We easily get wrapped up in the need to take advantage of the sunny days. After all we live in the northwest! Sunny days are like gold! Don’t miss out, because tomorrow it might rain and then you won’t see the sun again for another week… or three! We want to encourage Theo to get out and play, be a kid, get fresh air, and meet the neighborhood kids who are always outside playing. We want life to feel “normal”. We want to take back the spring and summer we didn’t get to experience last year because Theo was in bed all day or at the hospital. But what does Theo want? What do any of us want? To feel good and NOT have cancer. So what’s the rush? Let’s just enjoy where we are today. Take a moment to remind ourselves how far we’ve come, Luis, myself, and especially Theo. Today life is better. Let’s celebrate THAT. Eventually, we will go to Japan, Hawaii, Mexico, and of course, to the aquarium. Until then, let’s eat ice cream!!
“Today me will live in the moment unless it’s unpleasant in which case me will eat a cookie” – Cookie Monster
For those of you who are unfamiliar with where Kingston is or what it is like, let me tell you. A 30 minute ferry ride across the water from Edmonds, Washington, it is known as the northern gateway to the Olympic Peninsula. A cute and quiet little town located on the shore of Puget Sound. Beyond the marina and the charming few blocks of coffee shops and restaurants are neighborhoods, farms, local businesses, schools, offices… all spaced out amid the vast green landscape. Kingston is a place where nature’s beauty shines brighter, and the birds sing a little louder. A perfect blend of water, mountains and forest. So many beaches and trails to explore around the Olympic Peninsula, it’s like a giant playground. In Kingston the pace of life is slower, more relaxed. Not a single siren to be heard. Driving to the grocery store we pass pastures with horses and cows while admiring water and mountain views. Traffic? What traffic? Only to get on the ferry during the weekends. It is a 15 minute drive to “Little Norway” aka Poulsbo, the small but touristy town full of clothing boutiques, antique shops, and restaurants. Plus any large shopping center or nursery you can think of. close by. Kingston is close enough to Seattle for when we need it to be, but has the feeling of being far away from the city. There is an innocence about Kingston, like I’ve travelled back in time to when I was a child. To the days of Ernst Hardware Store and Village Lanes bowling alley at the University Village. We are ready for a change, ready for more space, ready for peace and quiet. Kingston is our new home, our new beginning. If you ask Theo how he likes living in Kingston, he’ll tell you, “I don’t like it… I LOVE it!
Our commute to Seattle Children’s Hospital is no longer five minutes. Now it takes anywhere from just over an hour to an hour and a half. When Theo has appointments we stay at my parent’s house in Seattle, aka Hotel MorMor and C. We are so fortunate to have had the luxury and convenience of living with them throughout Theo’s treatment and now as a place to stay when we need to be close to the hospital. A life saver. The light that has helped get us through the darkest times. Thank you, one billion times, Mom and Dad. It’s been truly special for all of us, but especially for Theo. Each time we pack our bags and head back to Seattle, Theo stirs with excitement to get on the ferry and see his grandparents, desperately hoping that we will get a spot with the best view.
Lately we have been taking the ferry quite often, in fact weekly. As I mentioned before, Maintenance is all about finding the right balance of medications. The dose that will put the patient’s blood counts in the “sweet spot”. Not too high, not too low. Initially, we thought Theo was on track. Other than the blood transfusion he had on February 2nd, there was no need to change his dose of chemotherapy. However, on February 23rd, we were given the order to hold chemo for one week (except Imatinib) due to low platelets. When we returned the following week on March 2nd, we were instructed to continue holding. Theo’s platelets had gone up to 65,000, but his ANC was down to 400. ANC must be at a minimum of 500 to continue therapy. So now that’s two weeks of holding oral chemo. By the following week, we thought for sure his numbers had recovered. Nope! On March 9th, we returned for a lab visit and back poke. Theo’s ANC had dropped to 300!! If counts do not recover after two weeks then Imatinib has to be stopped as well. Presently, ALL oral chemotherapy is on hold. But the real downer is that Theo could not go to the sleepy time room. Not because his ANC was low. It was actually due to his cough.
On February 5th, Theo was given a broad spectrum swab to check for viruses causing his cough. His swab came back positive for two viruses. It’s been over a month and while his cough is much better now, it is still not completely gone. Every morning he sounds like an old truck motor trying to start. During the day it is more under control but there is obviously some post nasal drip junk stuck in there that he has trouble getting out. At his visit this past Tuesday, March 9th, his doctor detected some slight wheezing in his lungs. She prescribed Cetirizine once daily for allergies and Albuterol twice daily to help open his airways. The doctor thought Theo would be given the green light to go to the sleepy time room because the wheezing is not severe and he wasn’t coughing at all during the exam. As soon as the anesthesiologist walked into the exam room Theo started coughing… and didn’t stop. The more conservative decision was then made to delay the back poke until the following week. Hopefully using the Albuterol inhaler an taking Cetirizine will do the trick of finally kicking that cough to the curb. Theo will return next week for another lab visit and possible back poke. That makes four weeks in a row of appointments. We were not expecting to be back in Seattle that often but at least we have a beautiful ferry ride to enjoy and delicious dinners with MorMor and C to look forward to.
Theo still has his port… but fingers crossed, not for much longer! One good thing about having weekly lab visits is that it has given Theo more times to get used to having a poke in his hand so his port does not have to get accessed. I made the mistake of thinking a poke in the arm or hand would be so easy. He’s had plenty of pokes before (like the famous four that he got when he was first diagnosed and likes to remind us of). It even sounds easier, right? Wouldn’t you rather get a needle poke through your arm instead of your chest? Surprisingly, the first arm poke did NOT go well. We arrived for a lab and provider visit on February 23rd with numbing cream on the inside bend of both of his arms and some on his port site just in case. I was expecting the entire blood draw to take five minutes, maybe. Theo, on the other hand, was terrified. He wanted to know what the nurses were doing at every step. What is that? Will it hurt? Why? Can I see it? Is the needle big? How far does it go in? And on and on. It only got worse when the nurse could not see his vein. Theo’s veins in his arms are small and the numbing cream makes them shrink even more. While the nurses put heat packs on his arm and had him squeeze his fist several times, Theo got so nervous he peed his pants a little bit. After an underwear change, the nurses tried again. The needle went in Theo’s arm but not in the vein. It was too small to find. Theo finally burst into tears complaining of pain after a minute of the needle moving around under his skin in search of the vein. The nurses gave Theo some time to calm down and returned 20 minutes later to access his port. Now that was easy. Like it usually is. No pain, no tears, no fear. Had I made a huge mistake thinking that getting the port out was a good idea? I felt so bad. What I thought was going to be a quick poke in the arm turned into an hour long ordeal. Theo, who always apologizes, even when he’s done nothing wrong, also felt bad and kept telling me between sobs that he was sorry. He admitted that even though he had pokes before, it had been a long time and he just wasn’t used to it. I could have held him in my arms for the rest of the day if he would let me.
Fortunately, Theo has larger and very visible veins in his hands. The nurses told us not to give up. It will be easier next time when they do the poke in his hand. So that’s what we did the next two lab visits and… it worked!! We put numbing cream on both of his hands and port site. Child Life was there with extra support and distraction, a huge help. Theo regained his confidence and cheered after the second time having success getting the poke in his hand. If the next hand poke goes well, the next step will be to take out the port! Hooray!!!
The sun is shining and Theo is laughing. The silliness with this boy never ends. Even after the lights are out, he is still throwing rhymes and riddles at us. Every time Theo turns one year older I catch myself saying, “this is my favorite age”. Since the life and energy has returned to Theo, we can see his true five year old self. It is magical. I have said this many times, how FUN Theo is. It is true and the better he feels the more fun we have. I’m not kidding. Daily I find myself laughing to the point of a stomach ache when we are playing. Luis and I shooting each other looks while we laugh hysterically. Theo is also a love bug who wants to help with everything. He will scramble the eggs in the morning, sweep the floors, combine the matching socks from the clean laundry pile, pull weeds, you name it. We are home together all day while Luis is working full time. Theo is my little buddy, my companion and coworker these days. He keeps me on my toes, especially when I make the mistake of saying the word, “can’t”. That word is NOT allowed. Why? Because you CAN do anything you put your mind to. Theo knows it and reminds everyone when he hears that word. Theo is also a sensitive boy. If Luis and I raise our voice, or get stern with him, Theo apologizes immediately. Sometimes he will get so sad or scared he will cry, saying that he is embarrassed by what he did. As much as I want to hug him while he cries, I do not want him to dwell on these things. We want him to learn from his mistakes and then move on. No silly tears. We want him to be assertive, speak up, and be confident. Theo has never been the kind of kid to run into a room uninvited. To yell out the answer before raising his hand. To grab a toy without it being offered. He would rather wait, be quiet, and know that it is his turn. Life will change drastically for him when he returns to school. My coworker no longer by my side all day. I know it will be good for him. To learn to stand his ground and have his voice heard. To be proactive and know that making mistakes is OK. And when he has a hard day and needs a hug? I’ll be ready to hold him in my arms as long as he will let me.
Had you asked me ten years ago if I would ever consider moving out of the city, I would have scrunched up my nose making a sour face and said, “Eeeeew NO WAY!” Well, turns out my 30 year old self had no idea what was coming. Not that I don’t LOVE Seattle. I do love it. It is also my home. Seattle is where my family and best friends live. It is such a beautiful city. As much as I love space, I also appreciate the convenience of being able to walk or bike everywhere. To have access to everything at your fingertips, life and people buzzing around you. I have taken full advantage of living in Seattle but now I am ready for something different. My family is ready. Space, for Theo and our dogs to play in the yard. More awareness of nature and wildlife around us. To watch the excitement explode in Theo when he sees a deer walking down our street or a seal sleeping on the beach. I want to go to the beach and have it all to myself. To not fight for a parking spot or have to listen to the conversation of the people sun bathing next to me. I want more quality time with my lovies. Yes, we are going to have FUN!!!! Oh… and did I mention we also got a new puppy?
“You’ve got to accentuate the positive, eliminate the negative.” – Bing Crosby
Revolution: the action by a celestial body of going round in an orbit or elliptical course; also: a sudden, radical, or complete change.
As earth makes it’s way around the sun, it evolves, it changes. A year long continuous journey for our planet earth. It twirls and spins through years of abuse, pollution, and being stripped of its natural self. Constantly rebuilding and repairing itself. Like earth, our lives are constantly evolving and changing as we continue our orbit. We change the way we live, the way we think, the way we feel. Looking for ways to improve and overcome life’s challenges. Creating stories and making history. Making a closer connection to ourselves and with each other. Challenges change us. Struggles change us. They unlock our potential and reveal the gifts we have. Sometimes, change can make us stronger and better. In earth’s most recent journey around the sun, Theo went through a revolution. His story is now one of the stars. In body, mind and spirit, he has endured radical and sudden changes that I believe, without a doubt, have made him a more brilliant person.
“Mama, what time is it in Japan?” The newest most frequently asked question of the day. In recent weeks, Theo has been talking non stop about wanting to go to Japan. Why? Oh, well let’s see. Could it be his obsession with ninjas or his love of eating sushi? Also, his favorite Street Fighter, Riu, is from Japan. That said, we better make plans to visit soon! We have been spending a lot of time talking about why there are different time zones and why the time changes when you travel, because that is important information if you go to Japan, am I right? Theo has learned about how the earth spins while it orbits the sun. He understands that while it is daytime here in the United States, it is nighttime in Japan. How cool is that? His face, his expression, his hands moving energetically while he told me all of this. Eureka!! Let’s just say… it got me thinking about earth, it’s orbit, the sun, the moon, the stars… the universe, and how we are all mixed up in all of it and making our mark.
Finally… MAINTENANCE. Theo just barely made the counts to start Maintenance on Tuesday, January 26th, 2021. As I mentioned in my last blog, his platelets were having a difficult time recovering from the last phase of chemotherapy. They were on the rise, but very slowly. The cutoff to make Maintenance is 50,000 platelets. Theo had 77,000. His ANC needed to be at a minimum of 500. His was 589. His hematocrit (red blood cell percentage) was low at 23.3% but high enough to move forward. At last, Theo gets to transition into a phase of “normalcy”. This means that Theo should be feeling well enough to be more active, play outside, and socialize (at a distance with a mask of course). Again, if it weren’t for Covid, Theo would be returning to school and going to visit all of his favorite places. But really, we’re just excited for him to have energy to play, feel good, and have fun… to just be a kid again. Hopefully no more hospital stays and definitely no more hard hitting intense chemotherapy!
Presently, Theo is in his third week of Maintenance. So far so good. It’s not quite the five star luxury getaway that I was dreaming of. More like a cozy weekend cabin retreat type of feeling. Hey, I’ll take ANY kind of improvement or positive change at this point. To feel that a weight, even as little as five pounds, has been lifted off our shoulders is incredible. There will be plenty of time for fancy vacations and fun adventures in our future. This is ONE STEP in the right direction and we are so so incredibly grateful for it.
Let me tell you how it’s going. Typically, when a patient reaches Maintenance, there is no need to return to the hospital for at least two or even three weeks. However, because Theo’s hematocrit was low and his blood counts barely made the cutoff, he had to return one week later on February 2nd. Sure enough Theo needed a blood transfusion. Theo had also developed a bad cough over the weekend. It was no surprise then that his energy was low and he needed to rest. We were kept in isolation and Theo was swabbed for Covid. It always gets our hearts racing when Theo gets a cold because the first thing we think of is, “OH NO… what if it’s Covid?!?!” Fortunately the results came back negative. Theo was asked to return for another visit that Friday, February 5th, to check blood counts and get a broad spectrum swab to test for viruses that could be causing the cough and cold symptoms. Turns out Theo had not one but TWO viruses!! He tested positive for the rhinovirus (common cold) and adenovirus (another common virus that can cause a wide range of cold-like symptoms). He was told to stay inside, stay warm, rest, drink lots of fluids, and watch for a fever. Oh man, this is no fun! Isn’t Theo supposed to be feeling better? Oh well, what’s another couple of weeks staying inside all day after doing that for almost an entire year? Not the start of Maintenance we were anticipating, but that’s OK. But seriously, what’s going on? Apparently, there is more to Maintenance than we knew about. A friend of mine gave me a heads up, a little inside scoop about how maintenance meds and doses work (such a valuable friend to have). Very helpful information that made me ASK QUESTIONS and gain a better understanding.
During Maintenance, Theo takes three chemotherapy meds orally. His dose for Imatinib never changes. It is a constant throughout his therapy. The dose for the other two meds, Mercaptopurine and Methotrexate, can be changed based on Theo’s blood counts. For example, if Theo’s neutrophil count is low, it might be that his chemotherapy dose is too high and vice versa. There is a “sweet spot” of where Theo’s counts should be. The ANC sweet spot is somewhere between 750 and 1,500. Therefore, some patients could be getting anywhere from 60 to 80% of their dose to prevent their numbers from getting too low. Theo started Maintenance with his dose at 100%. If his blood counts ever drop too low, his dose percentage will also decrease. If his blood counts are above the sweet spot, his dose will increase. It’s all about finding balance. So what IS too low? Just like how Theo had to make the cutoff to start Maintenance, there is a threshold for stopping chemotherapy. If his blood counts drop below those thresholds, all chemotherapy will stop until his blood counts go back up. ANC will always need to be above 500 and platelets will always have to be above 50,000 to continue therapy. The good news is that unlike other phases he has gone through, Maintenance NEVER gets delayed. The end date remains the same no matter how many times therapy is put on hold. It’s not a matter of finishing a specific dose of medicine, it’s about completing the amount of time being in the phase. That is SO COOL!! Mark your calendars everyone! No matter what, END DATE for all therapy is: January 26th, 2022
Theos is presently getting 100% of his dose. It has never changed, it never needed to. Theo returned to the clinic on Friday, February 12th for another lab visit. His blood counts looked great. No need for any transfusions, no need to stop chemotherapy. The appointment was short and sweet. We were free to go home. His next visit is on February 23rd. Wow, to go almost two weeks without an appointment seems crazy! I guess we better get used to it. We will also plan for an IV placement in his arm for blood draws instead of doing a port access at his next visit. Theo is super excited about that. If all goes well, we will schedule a surgery to remove his port! No more needles going into his chest, no more box under his skin that sticks out. One HUGE step for Theo to feel like a normal kid again. That and seeing his friends again!! Theo finally got to play with his best friend at the park the other day. It was like medicine for his soul. To see Theo and his friend playing, as if nothing was wrong in this world. Nothing else mattered, they got straight to the fun, being crazy and silly together. Theo’s cough is so much better, it’s almost gone. You know how colds can be… sometimes they drag on forever. So we stick to our pace: one day at a time. Theo may be in Maintenance, he may be feeling better, he may be ready to dive into the deep end, but we are keeping him in the shallow end. As good as he looks and feels, we have to remind ourselves, he is still fighting cancer. He is still taking chemotherapy. He is still highly susceptible to getting viruses, which could interfere with his therapy. I know Theo wants to be outside playing in the snow for hours and run in the rain and splash in puddles all day. He is a five year old boy, after all. You can see it in his eyes. A wild desire for adventure. To jump higher, run faster, and kick harder than ever before. It makes Luis and I the happiest parents to see him bursting with energy. But we have to find a balance as well, with how much we are willing to let go. How far do we let him run until we tell him to stop and wait? How high do we let him climb until we tell him to come down? My Gemini bird is ready to fly… and we are prepared to let him (while holding a net underneath him just to be safe).
Watch out, who’s that? There’s a big kid in town. He’s silly and so witty, the happiest kid around. You may not recognize him, he’s much taller than before. No longer just fuzz on his head, he has hair galore. There’s also something else, something missing on his face. Wait, where’s the NG tube? It’s no longer in it’s place. And what about his teeth? Do they look loose to you? It’s true, he has not one loose tooth, actually he has two! Doing so much on his own, as big kids often do, learning how to add and subtract, and now he’s reading, too! He fights bad guys all over town, he’s so brave and so strong. Always there to lend a hand, to help when things go wrong. He’s sweet as pie and kind to all, he talks to all the flowers. He brings the sun on cloudy days, this kid must have super powers!
“The more compassionate you are, the happier you are.” -Dalai Lama
“Autumn leaves don’t fall; they fly. They take their time to wander on this, their only chance to soar.” (Owens, 2018, p.124)
This past year has been the most difficult and challenging year for me as mother, a wife, and a human being. Never in my life has it been so hard to stay positive. As a mother, it is my job to set a good example. To not only teach but show my child what kindness and respect mean. To help my child understand and process his emotions. The last thing I want is for Theo to see me having a raging fit. Or for him to witness an ugly argument between Luis and me. But… it happens, right? Of course it’s not ok. It breaks my heart. Theo looks up to Luis and me, looks to us for how to feel and act in times of stress. And oh boy, this has been a year of STRESS. Theo must have a wise old soul like Luis, because he always seems to know the right thing to say at the right time. He pats me on the shoulder and tells me “It’s ok Mama, just take a deep breath.” As for Luis? Like I said: old soul. He is constantly reminding me to not hold in my frustrations, to communicate daily, effectively and kindly. Yes, I am the “huera loca” (crazy blond) and I am deeply loved. Well, it wasn’t easy, but we made it through the first year. The hardest part of treatment and the most intense therapy Theo will have to endure is over. After this very grim and frightful year I am hopeful and looking towards a bright future. It is time to leave the darkness behind me and breath. After all… Theo is not falling. He never was. Theo, like the autumn leaves, is flying.
One word: MAITENANCE. It is just around the corner! Theo is sooooo close we can smell it. Like a pie baking in the oven, waiting for the last few minutes to turn the crust golden brown. We are presently waiting for Theo to start Maintenance. We were expecting that he would start today, January 19th, but unfortunately, his platelets are still too low. He has already received one blood transfusion and two platelet transfusions since the end of Delayed Intensification #2. His legs are covered with bruises that refuse to heal and if he gets a cut it takes a long time for the bleeding to stop. I thought for sure a third transfusion of platelets was in his near future. His platelets are really struggling this time, but slowly and surely they will rise. This marks his third week of delayed therapy. He was scheduled to start on January 5th but his numbers were not high enough. Fortunately his ANC is well above 700 so at least his immune system is getting stronger. Being delayed one more week is not upsetting. It just means another week to rest and recover. On the down side, he got denied from going to the sleepy room after not eating all day. But it also means he gets one week off from taking Imatinib!! That is a big win for Theo. Either way, he will be there soon enough, likely next week. It felt like ages ago the doctors in the ICU spoke of this mysterious yet magical phase. Like it was some far off land that belonged in a fairytale. It’s not the finish line, but at least there are fewer hills from what we can see. Maintenance is the longest of all of the phases. It is typically when patients start to feel better, have less intense chemotherapy, and have a strong enough immune system to even return to school. Basically, life returns to almost normal. If it weren’t for Covid, Theo would be going back to school and to all his favorite places, like the aquarium.
Remember Interim Maintenance? It was the easy phase before Delayed Intensification #2. Well, guess what? Maintenance is almost exactly the same! He takes all of his chemotherapy at home, orally. He will continue to take Imatinib daily, as well as Mercaptopurine. Oral Methotrexate is taken once a week. Every six weeks he will get a back poke of Intathecal Methotrexate for a total of six doses, which Theo is obviously excited about. Maintenance is divided into four cycles, each course lasting three months. The only change happens in the fourth cycle, when Theo does not get any back pokes. Otherwise there are no changes in his medications. Last but not least is Bactrim – not listed on the therapy delivery map. Taken since day one, it is an antibiotic taken every Monday and Tuesday for the duration of his treatment and three months following the end of therapy to prevent pneumocystis pneumonia. Now to answer the burning question: how long does Maintenance last?????
When Theo was first diagnosed with leukemia, we were told that Maintenance phase usually lasts two to three years, sometimes longer for boys. We were shocked. Then Theo had to start taking Imatinib and we thought, “You mean he has to take this every day for the next three years, maybe longer?!” Well, I have good – no, AMAZING news. Maintenance phase for Theo will only last ONE YEAR. That’s right. How awesome is that? Also, because he will not need any IV chemotherapy, he can have his port removed!! I know, it just keeps getting better. During a provider visit on the Tuesday before Christmas, Theo’s doctor delivered all of this wonderful news to me. I was so happy I wanted to pick her up and give her the biggest bear hug. Hearing that was the best Christmas gift I could have possibly been given. ONE MORE YEAR. I couldn’t believe it. Why so much shorter than expected? In a nutshell, Theo got the shorter but more intense straw. Theo has had longer and more intense therapy than patients with the more common types of leukemia, therefore his Maintenance is shorter. Patients with the more common types of leukemia, in general have less intense therapy so Maintenance for them does last as long as two to three years.
That wasn’t the only reason to celebrate. Best thing of all, Theo was home for Christmas. We did not have to celebrate the holidays in the Cancer Care Unit! In the last week of Delayed Intensification #2 Part 2, Luis and I were definitely on edge. Anxious that at any moment a fever would spike, we checked Theo’s temperature more often than usual, feeling our hearts race ever time we heard the thermometer beep with a reading. There were a couple of days that last week when his temperature jumped into the “recheck” zone, but luckily never went higher. He did get some headaches but nothing Tylenol couldn’t handle. What a relief, he did not need any oxycodone. Sudden movements and sitting up out of bed brought on the headaches so he was not very active at all. The most activity he had was going to the hospital for appointments, some of which he slept through entirely! Leaving the bed to do anything other than go to the bathroom was rare. He even chose to stay in bed “just a little longer” on Christmas morning even though we tried to excite him with the news of Santa’s recent visit and presents under the tree. He finally found some energy to go open his presents and flash us his beautiful smile. Theo showing us the true meaning of holiday cheer.
The last day of Delayed Intensification #2 Part 2 was on Saturday, December 26th, 2020. By then Theo was no longer eating enough on his own so I dusted off the old feeding pump and hooked him up again. We were truly amazed at how well Theo had been eating. We were expecting his appetite to disappear long before it did, but he continued to prove us wrong. No new food cravings this time. Theo had been eating healthy size portions with a preference for bland. Favorites were, and continue to be salty popcorn and plain white rice. His holiday meal of choice was a giant bowl of mashed potatoes with salt and butter. At first we used the feeding pump as a way to supplement his nutrition. The rule is, if he eats more than 50% of a meal we skip the pump. If he eats less that 50% of a meal then he gets one 250ml carton of pediatric formula through the pump. Eventually, Theo stopped eating completely, but only for about one week. I was mentally prepared for Theo to be needing the feeding pump for weeks, even months, and therefore thankful that we were stacked with plenty of supplies. Surprise!! It wasn’t even two weeks later that Theo was back to eating again! By January 9th, Theo was off the feeding pump completely. Still eating popcorn almost daily… but done with the pump.
Presently, Theo is feeling GREAT. He is what you would expect a five year old boy to be. Full of energy, crazy, chatty, silly, and sweet as pie. It has taken three weeks, one blood transfusion and two platelet transfusions to recover from his last round of chemotherapy. Luis and I forgot (again) what it’s like to have a wild five year old. After months of Theo having low energy and barely getting out of bed, we had adjusted to a new level of “feeling good”. Our expectations had changed. Now, seeing him run, play, and dance, it’s like watching an alien. Who is this kid? Oh wow, it’s been Theo all along, he just hasn’t been feeling good or feeling like himself! What a difference. Theo has bounced back again. Sometimes we worry about the amount of time he has spent this past year watching cartoons and playing video games. Fortunately, Theo is so bored of cartoons! His desire to go outside and play is burning. I can’t blame him. After being cooped up inside for so many months it must feel so good to just be outside and play, dig, explore, and get dirty! He is back to scooting, biking, and his new favorite: baseball. This kid can hit. The louder the “boom” the bigger his smile. He bats left handed and throws the ball right back to the target. Some days we will spend hours outside hitting and throwing the ball. There are so many sports, activities, and musical instruments he has yet to try. I can’t wait to see what inspires him, what will bring light to his world. His NG tube is even out as of one week ago (January 13th)!!!!! He was so happy when it came out and I said it didn’t have to go back in… ever. He proudly announced that he is ready to go back to taking his pills because he is a “big boy”. His first night taking Imatinib pills he asked, “Why are the pills so small? Is it because I grew so much?” I can only imagine, Theo, like in Alice in Wonderland, growing to the size of a house after eating a mysterious mushroom, looking down at his teeny tiny pills. Well, he did it. The pills went down easy peasy, with Luis by his side. I don’t know how Luis does it. With me, it will take Theo 30 minutes to get his medicine down. So many delays, excuses, and interruptions. With Luis it’s done in one minute. Luis is so good at that. Cut the nonsense, let’s get this over with. Theo is so proud of himself, as he should be. He has been knocked down and beat up so many times. No more. Our Theo is here to stay.
During our many long hospital visits and lazy days at home in bed, I found time to read yet another wonderful book (and some other not so great ones). My new favorite, Where The Crawdags Sing, by Delia Owens, had me lost in time and space. When I read the above opening quote, it was like a window opened and sunlight came through. I saw beautiful radiant colors and immediately felt happy. That is how I feel every time I see Theo smile.
“It’s hard to beat a person who never gives up.” – Babe Ruth