Red Sky in Morning, Sailors Take Warning

It is 9:26am. As I sit here in the hospital room all I can hear is the feeding pump gently and rhythmically pushing formula through the NG tube. Silence. I am not used to it. I am waiting for the panic to begin. For the moment Theo wakes up and starts screaming in pain or crying in misery. I am waiting for him to yell over and over again with swollen red eyes that he wants to go home. I am waiting to see him suffer through another day. Silence. He is asleep still. Comfortable from the oxycodone delivered to his body every four hours. No more pain. No more panic. The storm is behind us and now he can rest and recover. It has been almost two full weeks since the start of Consolidation Block #2. Two weeks of hysteria, anger, tears, and rage. Today I will not cry. Today I will not be angry. Today there is silence.

Cancer is UGLY. It is tragic, nasty, and horrid. I do not want to be an eternal rain cloud. But this is real. I do not hold back. Here in this blog you will not just get the steps of treatment but how it FEELS to go through it. This is our story. As optimistic as I am, I cannot pretend that everything is OK and just look on the bright side all the time. There will be better days, plenty of them. These were NOT them. I wish I could post these updates in real time. To tell you what is happening RIGHT NOW verses what happened three weeks ago. However, it takes time to process my emotions and organize my thoughts. Life is a yo-yo right now, a constant bouncing of ups and downs. So even though this update is a drop to the bottom, know that we always bounce back up again!

Warning: Continue reading at your own risk. Content may cause your heart to ache.

You want to know what it’s like for a child to have leukemia? You want to know what treatment is really like? You sure? Ok, here it is. Don’t say I didn’t warn you. The doctors warned us of many events that were likely to happen going into Block #2. They told us it would be harder. They told us mouth sores were likely to happen. They told us he might need an NG (nasogastric) tube. They told us Theo might need to stay in the hospital longer. Guess what? They were right. But it didn’t matter. Because nothing can help prepare you for the many long days and sleepless nights, watching your child suffer, mentally and physically. By the end of day ONE Theo had cracked the code, put two and two together. Being at the hospital means NO FUN. It means being attached to an IV pole and getting woken up constantly to do things you don’t want to do. It means pain. He was more aware than ever of what was going on. Listening to every word of every conversation. One day the doctor came in to talk about Theo’s recent weight loss. She asked Luis what he normally weighs and he answered, “I think about 18 kilograms”. At that moment, the seemingly asleep Theo chimed in with the quiet correction, “19”. We couldn’t sneak anything by this kid. He knew that he was in for a doozy and no one could fool him into believing otherwise.

After Block #1 something changed with Theo. My calm, sensitive, silly boy, was starting to have panic attacks over things that normally would not be an issue. Like taking pills. Before Block #1, Theo could pop the two and a half Imatinib pills down his throat like it was no big deal. He could gulp down a full glass of water in seconds. Now, I ask him to drink water and you’d think I was asking him to drink hot lava! Theo started working himself up so much to the point of vomiting. There was no way we were going to get through six days of taking oral medicine multiple times a day without some changes. The nurse watched as Theo struggled hard (for almost 60 minutes) to take his first round of four medications following his lumbar puncture procedure. She said to me, “this is not sustainable.” She was right. Those eight pills at 12am were not going down without serious help.

It was time. Theo needed an NG tube for medicine delivery. Enough was enough. We knew how helpful it would be and from talking to the nurses, it sounded pretty easy to have it placed. HA! If only that was the case. Placement of the NG tube is NOT EASY. In fact, the first week of having an NG tube was not easy. Let me explain. Imagine the feeling of a fat plastic spaghetti noodle getting shoved up into your nose then traveling down the back of your throat until it reaches your stomach. It is sure to make you throw up. Now try swallowing or talking. Unpleasant I’m sure. Ask Theo, he’ll tell you. Feeling violated and upset about the new foreign object in the back of his throat and the sensation of liquid moving through it, Theo could not calm down. Not even the Ativan (used to treat anxiety) helped. All it did was make him really high then freak out because he didn’t feel “normal”. It was a full week of screaming and panic every time medicine traveled down the tube. I don’t know what I was thinking. That once the tube was in, we were set? Easy peasy? Like magic, medicine anxiety would just disappear? YES. That is exactly what I thought.

It was a rough first day. Correction. It was a nightmare. Theo as usual, was excited for the sleepy time room. Then it took a dark turn with the first NG tube placement. Like I said, not easy. We were not prepared for it to be such an ordeal and I was foolish to think that it was a “one and done” kind of situation. Brace yourself, here comes the storm!! At 9pm Theo threw up all of the meds that had just been delivered AND the NG tube. He needed to take all the medicine over again so he reluctantly decided to take them orally. It took one agonizing hour to get four pills down, two syringes of bad tasting stuff in, then more pills crushed in yogurt swallowed. One… final… pill… to swallow. Almost done! NOPE. Theo vomited. Again. The last hour of tears and stress for nothing. After talking to his team of doctors it was decided he needed another NG tube ASAP. It is absolutely necessary for Theo to get his daily dose of Imatinib. It takes priority over all the other oral medications. So at 2am we went through it all over again. More Ativan, more screaming, and another NG tube placement. Twice after that I had to wake him up to go pee. I had to fight him, I mean, FIGHT. I held him down and pulled off his underwear while he screamed at me. I’m not sure if it was the Ativan or just that Theo was so angry and fed up with everything, but he was in a terrifying rage all night. That finally put me over the edge. I’d say it was around 5am when I finally lost it and broke down with such intense anger and sadness all I could do was cry.

I wish I could tell you that it got easier. I wish I could tell you Theo stopped crying. I wish I could tell you that we eventually got some sleep. Of course we did… two weeks later! Now looking back at the rest of our hospital stay, it was a blur of bad feelings and emotions: tired, angry, sad, and frustrated. How did Theo feel? My guess is that it’s a lot like that feeling of being dog sick. You have no energy and you feel like you got hit by a train. You are constantly being touched, poked, examined, and told what to do. You’re in pain and on top of that you are throwing up all over yourself and pooping your pants uncontrollably. How would you feel? Theo was FED UP. Oh and he made sure we knew it because he said it several times a day and yelled at us constantly. Telling us not to talk, “nope, no, no talking, zip”, “no more medicine I say” and yelling at me, “I’m not going to be your best buddy anymore!” because I didn’t wipe the drop of pee off his leg fast enough. But even through all the pain and frustration he knew he was not himself. One night while wiping him down with chlorhexidine wipes, which he hates, I had enough. I told him since I “can’t do anything right” according to him, he could wipe himself and get himself dressed, and I walked away. What he said next made my insides turn to mush. He cried out to me, “I’m so embarrassed. I’m sorry, I don’t mean to be mean. I just want to feel normal.” Oh my sweet boy, I am so sorry. “Mama”, he said. “I’m having a hard day”. Yes, my boy, you are. You are having a very hard day.

Hand smack to the forehead. Theo said it. “Oh this just keeps getting worse!” On day five, Theo was scheduled to get Daunorubacin. Remember that one? The chemotherapy drug that turns pee reddish-orange. A possible side effect, when given a large dose, is damage to the heart tissue. Therefore, another drug, called Dexrazoxane, is given along with it to protect the heart. I was at home taking a break when it happened. Unaware of the extreme terror that was occurring back at the hospital. The text from Luis read: RUN HERE NOW. All it took was a second. One drop. Not a minute after the drug was delivered into Theo’s bloodstream did his throat start to close up. He was having an acute allergic reaction. I am so glad Theo was able to communicate his feelings. He told Luis, “Something is not right. I need help.” Theo was shaking in Luis’s arms. “How am I going to get through this?” He asked. Luis responded, “You will get through this. I know you will because I am your papa.” Theo, comforted by his papa said, “Oh. Yeah”. I am so glad Luis was there with him and caught it so fast. I am so glad the hospital staff acted so quickly. It only took seconds for the entire 7th floor staff of the cancer care unit to flood into our room. Theo was given a shot of epinephrine to his leg and oxygen to breath. The ICU nurses kept a 24 hour watch on him just in case the reaction came back. Fortunately, Theo remained stable and safe. Ok, time to take a deep breathe. We are almost done… or are we? Ooooh we are so close!

Six days admitted in the hospital turned into eight. Theo could not leave the hospital until his body cleared the Methotrexate. Bad news: the longer Methotrexate stays in your body, the more likely you will have side effects, like mouth sores. We waited (not so patiently) every morning for the doctors to give the report. Finally we got to go home, with the promise that Theo would drink a minimum of six cups of water a day. And we didn’t leave empty handed! Congratulations Theo! You have won the grand prize! Because you have lost so much weight and have a hard time keeping food down, you get a 30 day supply of Complete Pediatric formula! But wait, there’s more! Your gift includes 30 feeding tubes and your very own feeding pump!! Hooray! Well, I can’t say we didn’t see this coming. Like I said, we were warned. It was a big step to get the NG tube, but we weren’t expecting it to be for feedings. Only medicine delivery. Theo is an excellent eater. He enjoys GOOD food. He is not a picky eater either, in fact, one day he told the nurse that he could not wait to go home and eat fried octopus! So when Theo stopped eating, or eating very little, it was strange. His mind wanted him to eat but his body said no. Soon, it hurt to even move his mouth. Mucositis. Painful open sores in the mouth. It can be so severe that the sores travel down your throat, through your body all the way to your butt. OUCH!

We wanted to feel good about being home, but we carried more stress with us this time. Luis and I were overwhelmed with the amount of care Theo needed. Delivering meds, managing his pain and nausea, and pushing him to get the water intake that was required was a heavy load. The next day he had an appointment to get his blood counts checked. Theo was in urgent need of both platelets and blood. The hospital was the LAST place Theo wanted to be. In the seven hours it took to receive both transfusions, Theo’s anxiety and dread of being back at the hospital escalated like a tea pot of boiling water. The heat inside him rising until he couldn’t take it anymore and his alarm whistled. By the end of our visit he was in full panic and rage mode. He spiked a fever and that did it. One day after discharge and Theo was admitted back in to the cancer care unit at Children’s hospital. On one hand it was upsetting. Really? After eight days we are back again?! But on the other hand it was oddly comforting. Theo was just where he needed to be. In a place where he could get all the care and medical support he needed while having mama and papa by his side. Being back in the hospital, while not ideal, helped lift some of that stress off our shoulders. Yes, five more nights was a lot, but necessary. We were not allowed to leave until three things happened. No fever for 24 hours, no new blood culture growth (infection causing bacteria) for at least 48 hours, and an absolute neutrophil count (ANC) of at least 200. The chemotherapy destroys the bone marrow’s ability to make new cells. Once the bone marrow recovers, it starts making red and white blood cells and then neutrophils again. Once the ANC goes up, the tissue will start to regenerate in his mouth and the sores will heal. So really, it just takes time.

His last night in the hospital he got sick in the middle of the night and threw up his NG tube, even with me holding it in place. I was so upset. I definitely overreacted. Not again!!! How were we going to get through this?? The next day an entire team of nurses and hospital staff showed up to give Theo light sedation for the NG tube placement. It was so helpful, but not something we could just re-do every time the tube came out. So when Theo threw up the NG tube AGAIN later that night, a fire lit up under my ass and I told myself, “OH HECK NO”. I grabbed the NG tube and shoved it back up Theo’s nose while he was still gagging, taped it to his cheek, checked placement with a stethoscope and success!! I couldn’t believe it. I’ve had to do that a couple more times… still works!

Five days, a couple doses of morphine, round the clock oxycodone, and one more NG tube later we came home again. Only this time we were all feeling much better. Seeing Theo smile and laugh is the greatest joy in my life. Going two weeks without either crushed my heart. We did it. THEO DID IT. Another block down… ONE TO GO. And when Theo throws up the NG tube again? No worries, I got it. Wind settles. Calm heart. Rest my mind, the storm is behind.

We are not alone. There are so many stories of heartache and pain of parents watching their child hurt and suffer. My story is one of many. In fact, many of you reading this right now probably have a similar story of your own. A time when you felt so emotionally destroyed and defeated. A time when all you could do was cry, whether it be from a personal struggle or while taking care of a loved one. We all know pain. We all have a few dents and cracks in our hearts. Mine are healing. I don’t know what I would do without my family. My husband, Luis, is my rock. He wears many hats throughout the day: strong papa, loving husband, chef, and nurse all while working a full time job. My parents are always there to listen. Always giving me encouragement and loads of compliments (or a big bear hug when I can’t stop crying). And of course I have the most amazing friends in the world who give me support without ever asking. There is someone I am especially thankful for. A mother of a child with leukemia and recently a dear friend of mine. Thank you for checking in with me, giving me helpful tips and advice, knowing exactly what I’m going through. There is strong healing power and comfort when talking to someone who is IN YOUR SHOES.  I want to thank all of you for following my story, for listening and being here with me and sharing your stories. Like I said earlier. There will be plenty of better days. Days when Theo will be laughing and “battling” his spider-man stuffy. Days when he will want to get out of bed to play. Days when we can look back on this time and be happy we got through it. I can almost taste it. The brightest red strawberry hanging ripe on the vine. Just one bite makes life so sweet again.

“All the world is full of suffering. It is also full of overcoming.” – Helen Keller

Into the Woods

You are going on vacation. Flight and hotel are booked and you are headed for paradise. Or so you think. First, your luggage gets lost. Then, a storm hits and it dumps rain the entire trip. The roof of your Airbnb is leaking and your rental car got a flat tire in the middle of the jungle. Not what you were expecting, right? That was my feeling after checking into hotel Children’s for six days of intense chemotherapy. Yes, I knew how it all looked on paper. Yes, I knew it would not be easy. Yes, Theo is STILL a super hero. But oh boy, we were in for a doozy. Meanwhile, there is Theo with his Spider-man backpack, so excited to go back to the hospital like he’s on his way to a friend’s sleepover. Little did he know what was coming.

Where do I begin? First let me say that we are so incredibly grateful for Children’s Hospital, their staff, and everything they do for Theo. We are very fortunate to live in Seattle, five minutes away from one of the best hospitals in the world for treating leukemia. Everyone is doing their very best to help Theo be cancer free and healthy again. Remember, each person responds differently to treatment and there is no “one size fits all” plan. There is no way to predict how any person will respond to the chemotherapy. Not even the doctors know how Theo will feel. Their job is to lay out the treatment plan and manage it along the way. Like I said, I knew how this looked on paper. Each block of consolidation is one week of getting bombed with chemotherapy, followed with two weeks of recovery. There are three blocks. I made the assumption that because Theo had completed induction phase so well- getting used to the medicines, learning how to swallow pills, rarely getting sick, having an appetite – that he would continue to do the same in the next phase. To put it simply: I was optimistic. Once it started though, it felt like I was on a battle field with no armor, no plan of attack, left to surrender.

Ahhh, there is it. The infamous chart, schedule of drugs, the dreaded healer. Welcome to consolidation block #1. It starts with a lumber puncture (four different chemotherapy drugs delivered to the spinal fluid), which means sleepy time room! Woohoo! Theo, still in excited mode, not catching on to the struggle ahead. Then a quick and very dramatic downward spiral. Sorry kid, fun is over. Here come a lot of drugs. All at once. All guaranteed to make you feel awful for the next two weeks. All with potential serious side effects. Which means more drugs to counteract those side effects. Here come more pills, more icky tasting medicines, vitals and eye drops every four hours, and oh yeah, you will have to go pee with your IV pole attached to you every two to three hours during your six day stay. I know, not the sleepover party you were expecting. I won’t go into the details of everything that happened, every doctors meeting, every scheduled drug dose (even though I could because I wrote it all down). What I will tell you is this: It was hard. It sucked. It was sleep deprivation torture. Theo was never able to sleep for more than two hours at a time. Try giving a sleep deprived four year old eight (yes EIGHT) pills to swallow in the middle of the night. That’s when it hit me. When I realized what it would be like for those six days. (Insert photo: Me holding optimistic balloon. Optimistic balloon getting popped.) We tried wrapping pills in fruit roll-up. We tried liquid form (Bleh!) We tried crushing pills up with yogurt, mixing in flavored syrup, plugging the nose. It was like taking “water medicine” all over again. Hearing the word “medicine” once again, has caused immediate panic, anxiety, and eventually tears.

One morning, Theo was having an especially hard time. There was nothing I could say or do to make him take the sodium bicarbonate. There is a very specific schedule that must be followed and we were falling behind because of him stalling. He couldn’t stop crying, “oh this is not fun, this is so hard”. Meanwhile, the nurse was trying to help, the CNA was trying to take his vitals, and the physical therapist was by his bed waiting to take him to the gym for exercise. I just wanted to scream, to tell everyone to leave. Let Theo be, let him cry, let him breath!!! I needed to breath. Help!!!!

Luis to the rescue. He took a break from work just in time to give me a break. Only one parent is allowed in the hospital at a time so that’s how we do it, taking turns when we can. How do single parents survive this? Of course in the end Theo took his medicine and got through it. He had some mouth pain for a few days but luckily it never developed into mouth sores (side effect of Methotrexate). All of the chemotherapy was completed successfully. Theo, who by day six was fed up and bored, couldn’t have been more excited to go home. He told me he even missed the neighbor’s dogs. His tired body managed to produce a weak smile when he saw that his stuffies were all waiting for him with balloons and pizza for his welcome home party. It felt so good to be home. But the battle was not over. Wait, what? I know, we thought recovery meant feeling better… not worse. We all thought the hardest part was behind us. Hold on folks, we’re not out of the woods yet!

Our first morning at home, Theo woke up nauseous and shaking like a leaf. He couldn’t even hold a spoon. I will again, save you the details of how many times Theo got sick… all over himself, all over us, the bed, the floor, the couch… for the next ten days. The weakness and shaking slowly improved day by day. The frequency of getting sick also decreased as the days progressed but the anguish and stress of it did not subside. Giving him anti-nausea medication every three to four hours didn’t seem to help either. The getting sick is not even the hardest part though. Yeah, it sucks to have to clean up if you don’t grab a bag in time but oh well, it’s just blankets and clothes. They can be washed (three times with extra fabric softener of course). The hardest part is having to take the medicine ALL OVER AGAIN because it never stayed down. The last 30 minutes of struggling, stalling, and crying – all for nothing. Each time Theo gets sick feels like a crack in my heart. He sees our worry and pain. He knows he just lost all the good nutritious food he ate and needs. One night he even apologized after getting sick on the bedroom floor. He told us that he “woke up and couldn’t find a puke bag in time and didn’t have time to yell for us”. That certainly left a huge dent in my heart. It got to the point where I stopped caring so much what he ate. Just eat kid! Enjoy your food and hope that it stays down. His insides were all a mess. Slowly recovering just so he can get bombed with chemotherapy and go through this all over again in consolidation block #2. The next block I’m told is even more intense. Great. What am I supposed to do again? Oh yeah… breath!!!

What do you do when you fall off a horse? Don’t ask me, I haven’t ridden one in years! Oh I get it… you get back on!! That’s right, no bad attitudes here. The key is to stay positive. Theo has finished one block and has two more to go. Soon this will pass. Afterall, this is a journey. There is bound to be ups and downs, twists and turns. Now we know what to expect and are better prepared. I have my sword and shield, and a stack of puke bags in every corner of the house, every purse and in the car. And when I need a break, I will take one. I am not super woman. I am Kelly, a mom, who just like any other parent I know, is doing all I can to take care of my son. We love our children and we want the best for them. That is what makes us all amazing. Taking care of Theo is a lot of work and surely exhausting at times. He doesn’t need a teacher or an entertainer right now. He needs his mama and papa (and Bobo the monkey). Happiness is our super power weapon, it breaks through our anger and despair. We have a few days of feeling good until we head back to the hospital. So if all we do is lay in bed all day talking to his stuffies, sharing rhymes, and playing his favorite Spider-man game then hey… as long as Theo is happy, I’m happy.

Today I think I’ll read a book, or maybe two or three, about the Roman empire and Greek mythology. And then I’ll learn a language because I have a wish, to one day live in Mexico speaking perfect Spanish. Later I’ll practice yoga and while I’m on a run, put homemade bread in the oven to bake so when I return it’s done. Then I’ll make that costume Theo asked me to sew, but first a science lesson of making potions that bubble fizzle and flow. Of course I’ll do some gardening, throw those weeds in the yard waste bin. My car could also use a washing. I can easily squeeze that in. Another day in lock down, another productive day… On second thought I think I’ll just stay in bed and dream dream dream away.

“From the cradle to the grave is a school, so if what we call problems are lessons, we see life differently” -Facundo Cabral

Follow The Yellow Brick Road

No time for creative introductions, I’m just going to get right to it. Theo’s MRD is ZERO. That’s right, Theo has NO leukemia cells in his body! Now, go grab that fancy bottle you’ve been saving for a special occasion and toast! (Thanks for the champagne, Mom!) Needless to say we are beyond happy, thrilled, overjoyed to receive this news. We know this is not the end – not even close. It does not mean he is cured, yet… but it is a huge victory. It means that Theo is responding very well to treatment and will not likely need a bone marrow transplant in his future. It means that his chances of being cured are even greater. It means that Theo’s treatment moving forward will not be as intense. It means that Theo is indeed a super hero… duh. So what now?

Here is the simple answer: more chemotherapy. Satisfied with that answer? Me neither. First, some things to keep in mind when talking about Theo’s treatment. Theo has a RARE form of leukemia, Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ALL). Treatment standards are different and overall more intense than the other more common types of leukemia. He may be in the “standard risk” arm but his treatment will always be considered “high risk” when compared to other types of leukemia. It is also why he has to take Imatinib, a chemotherapy drug (the one we used to call “water medicine”) every day for the remainder of treatment (three plus years). Now, for those of you looking for a more thorough explanation… bear with me.

When in doubt, refer to a flow chart. This chart shows the phases that Theo has already completed and the phases that are to come. The MRD came back less the 0.05%, which means he goes to the “standard risk” arm of treatment. Within that arm, there is Arm A and Arm B. Great, another fork in the road. “Now which way do we go?” Asks Dorothy. Luckily we don’t need to depend on a scarecrow’s advice to figure out which direction we are going. We got our answer from a clinical study. Let me tell you why. When this all started, when Theo was first admitted to the ICU, we met with a very large team of specialists assigned to Theo’s case: doctors, researchers, fellows, nurses, you name it. Again, it was all such a blur at the time I rarely knew who was who or what they were talking about. We were told that treatment planning heavily relies on results from clinical studies. In other words, experimental studies are needed to help figure out the best way to treat patients with leukemia. We were asked to participate in a clinical study and we said YES. We believe that if we can help doctors and researchers find a better way to treat leukemia then we should do it. It plays a huge roll in the advancement of medicine. It is why Theo can be treated so effectively today and eventually cured. It is why there is a drug, Imatinib, that works to kill the Philadelphia chromosome… because 15 years ago, it did’t exist. So, back to the flow chart. The fork represents the clinical study. The purpose of the clinical study is to find out if extra chemotherapy is needed. Is the addition of the Imatinib drug enough to kill the Philadephia chromosome-positive leukemia cells? OR is a higher intensity chemotherapy regimen needed as well? Arm A is the standard treatment: higher intense chemotherpay with Imatinib. Arm B is the experimental arm: less intense chemotherapy with Imatinib. Theo was assigned to Arm A. Now can you see why I love this blog? There is no way I could explain this every time I was asked, “What’s next?”

Buckle your seat belts everyone. Arm A starts today in full force! We have packed our bags and are checking into Hotel Children’s for six days. Consolidation #1 here we come. This week marks the first week out of a minimum 30 weeks that represent Arm A. That means we have roughly eight or more glorious months until we make it to the maintenance phase. Trust me, I would love to tell you all about what is to come over the next 30 weeks, but now is not the time. Patience my friends, I have lots of charts to share! Mmmmwwaaaaah ha ha haaaaa! (evil laugh). All of that to come (hopefully) soon. For now we sing The Sound Of Music “so long, farewell” to the journey behind us and shout Spider-man’s warning, “watch out, coming through!” to the journey ahead. We cannot control this journey that was chosen for us, but we can control the energy we feed it. Yes, there will be lions and tigers and bears, oh my! But we have strength, love, courage… and this beautiful smiling face to always remind us to focus on the beauty and good in life.

“A heart is not judged by how much you love; but by how much you are loved by others.” -The Wizard of Oz

Easy Cowboy

“Do we have any appointments tomorrow?” The question I’ve grown used to hearing every night before we go to bed. Lately my answer has been a delightful, “NO”. The reason is because we are in between phases of treatment. Let’s take a moment to review, shall we? Remember that lovely picture of the terribly confusing chart I posted a while back? You know the one. Remember that leukemia is treated in phases. Theo finished induction 1A part 1 and part 2 as well as induction 1B at the end of March. Theo is now at a fork in the road. In order to know which path of treatment to take next, Theo’s doctors need to know how much leukemia remains in his body. On April 7th he was scheduled for a procedure to have a sample of bone marrow taken, to determine the minimal residual disease (MRD). Unfortunately his neutrophils were too low to proceed (they must be above 500). So we waited one more week and returned the following Tuesday. Again, neutrophils were too low! Theo was very disappointed. He likes going to the “sleepy time room” because the sleepy milk makes him feel tingly and dizzy. Ok, third time is a charm, right? So we went back on Friday, April 17th and finally he was able to have the procedure done. If the MRD is less than 0.05% he will go to the standard risk arm of treatment. If the MRD is greater or equal to 0.05% he will go to the high risk arm of treatment. Next phase being either consolidation or interim maintenance. Now… we wait for the results. That could take anywhere from two to four weeks!

Not that I will miss going to the hospital. Going anywhere these days makes me nervous, even the hospital. What I miss is socializing with the staff. We have the best team of nurses, doctors, and coordinators. They make each visit feel like you are visiting a dear old friend. But let me tell you, it is a process just getting to the check in desk. We arrive about 30 minutes before our scheduled appointment time. There is only one entrance open to the part of the hospital where the hematology/oncology clinic is, where Theo is treated. There are two staff members waiting outside with a screening questionnaire. Once you pass them, you enter the first doors to have your temperature taken and appointment verified. All together this process does not take that long, but you could be waiting in line for a while if there are several other people trying to get into the hospital at the same time as you. Children’s Hospital also has a new protocol. For any child going under anesthesia, they must be tested for Covid-19 within 72 hours of the procedure. There is a drive through testing center close to the hospital. It takes about two minutes. The nurse came out dressed in a full gown, face shield, mask, and gloves. She leaned through Theo’s rolled down window and wham bam, swab into the way way back of his nose and held there for five glorious seconds. Easy peasy for Theo. This was his second Covid-19 swab, third swab in general in the last two months. It doesn’t seem to bother him too much surprisingly. Then we drove away. We were called within 24 hours with the results… negative, again.

It actually feels a bit strange not being at the hospital. So… now what do we do? Oh, we can just be home all day doing our thing? Cool. But really, what DO we do ALL DAY? I would love to tell you that we are doing science experiments, reading lots of books, doing fancy art projects we find on Pinterest, and hours of school work. After all, I am not working at all right now so I have nothing but time. To be perfectly honest, we spend our time doing whatever we feel like doing! Sleeping in, playing video games, watching movies, gardening, going for walks, coloring, fighting bad guys, “homework” in costumes, video chats with friends, exercise… and so on. Sure, we still have some structure and expectations to meet in our days during theses unusual times. We just let go of a lot of the pressure we used to feel to DO so much every day. I’m not saying we don’t have rules – there will always be rules because kids need them and we need our sanity! And fortunately, my husband Luis has his job and is still very busy working every day. AND he cooks dinner every night!!! (Because he’s an amazing cook and loves doing it). Wow, now I’m feeling lazy. Sometimes I feel guilty to be relaxing eating a delicious dinner of barbacoa or adobada tacos with a tasty beer during such a horrible pandemic and so many people suffering. But why? Haven’t I got enough to worry about? So I remind myself to enjoy the moment. Enjoy every happy moment when I can. Luis’s favorite chef, Michael Pierre White, is known for saying things like, “How much of this spice or that ingredient? Who cares? Do what tastes good for you” That is how I feel like some days. Sleeping in late? Who cares? Watch another movie? Why not. Have a dance party at 10pm? Yes please. Because Theo will only be this age once. Because Theo has cancer but he’s feeling GREAT. Because Theo can swallow pills (aka no more water medicine) YES!!!! Because Theo is happy.

“The most beautiful thing about cooking is the silent language. You can’t write about it” -Francis Mallmann

Fresh Air

I have been staring at a blank screen now for almost 20 minutes. All of this: the virus, staying inside, nation wide shut down, escalating deaths around the world, a pandemic… it has been so hard to process. As the days go by it only gets harder. You see, I’ve always been a “go with the flow” and “stay positive” kind of person. At least I make it appear so on the outside. If I am having a hard time, worried, or frustrated, I do not like to show it. Especially for Theo these days, I try to keep up a positive attitude and appearance. Everything will be ok. But the truth is, I don’t know. No one knows. What I do know is how to help myself feel better. So this morning when I woke up feeling unmotivated, unsettled, stuck – like I wasn’t going anywhere (mentally and physically)… I decided to write. It helps me organize my thoughts and face up to my feelings. Like I said, no one knows what is going to happen. THIS IS SCARY. I have never been so scared of Theo getting sick. A couple of weeks ago, I received a phone call from Children’s Hospital informing me that on Wednesday, March 18th, Theo and I were exposed to an individual who tested positive for Covid-19 in the Hemotology/Oncology clinic. Oh great. Breath, stay positive. It’s not like Theo can stop going to the hopsital for treatment, so what’s the alternative? His doctor told us back in January, it wasn’t a matter of IF he would get sick and therefore need to stay in the hospital, but WHEN it would happen. Well, we are doing everything we can to make sure that WHEN is not NOW. As if there wasn’t enough to worry about before this dang virus. As is we aren’t already freaking out about every germ, every surface touched, every person we come close to, and washing our hands 100 times a day. To be honest, our lives haven’t changed all that much. With Theo’s immune system being so compromised most of the time we never go out to crowded public places, we wash our hands like crazy, clean and do laundry like we’re Cinderella, and we keep people away. The difference now is just how much more we stress about it. It is exhausting. But hey, I must say this writing thing is working. I’m feeling better already, more clear and productive. I hope you have a way to cope with all of this going on. Please share your thoughts with me if you wish.

And now we break for a poem. Written on another day I was feeling “stuck”, laying next to Theo while he napped.

The fuzzy hair on your head tickles my chin. Every time you exhale I feel your warm breathe on my skin. You are curled up beside me snuggling me tight. I could stay here all day and all through the night. The window is open to let in a fresh spring breeze. The birds are joyfully chirping outside in the trees. Let our worries travel far away from here. As we rest our bodies and minds we’ll keep our happy thoughts near. I’ll dream of sunny days with papa and you. Playing at the park under skies so blue. My champion, my super hero, my sweet silly boy. I love you forever, you bring me so much joy.

Back to business. Oh no, not another confusing chart! It looks more complicated than it actually is. The chart shown above is the treatment plan for medications to be given during induction part 1B, which Theo just completed. Every time he enters a new phase of treatment we get a new chart to show us the schedule of which drugs are used and when. I am happy to report that Theo cruised through part 1B like a pro. What?? Say that again!! I am happy to report that Theo cruised through part 1B like a pro. He can even pronounce all the names of the medications perfectly. “Mama, am I getting Cytarabine or Cyclophosphomide today?” Everyone, including his doctors, were amazed to see him doing so well. If it wasn’t for the hair loss you could hardly tell he was getting chemotherapy. The only other sign of sickness was his cough. He had a cough that lasted a good two months, but the doctors agreed that it would go away after some time. He started taking an albuterol inhaler to help loosen up the junk in his lungs. After each dose he would cough violently to the point of puking for sometimes up to an hour. Chest xrays showed progress so we knew we just needed to be patient and we slowly, very slowly saw the cough improve. Theo was also swabbed for Covid-19. Drum roll… it came back negative. Relief! Through part 1B, Theo was (and currently is) happy and feeling good despite the cough. His energy level has been up, silly, playing, and back to fighting bad guys! He has not been eating two plates of spaghetti, but at least he still has an appetite, which means no feeding tube. I was a bit worried when Theo was prescribed three different anti-nausea medications, but fortunately he only needed the minimum daily amount of one medicine, that he was already taking.

Treatment during part 1B got put on hold for one week due to a low Absolute Neutrophil Count (ANC), but we were told that is common. Other than that one week off, our schedule was pretty busy. We were at the hospital most days of the week, some days for as long as 7 hours. Most of the time for chemotherapy and other times for blood or platelets. But seriously, where else are we going to go? What else are we going to do? All the staff at Children’s Hospital is so wonderful and friendly we actually enjoy seeing them. It’s like our social time with the outside world. We just met with one of Theo’s lovely doctors. I am almost sad when the appointment is over, she is so fun to talk to. She gave us some good news: Theo’s lungs are clear and he no longer needs the albuterol inhaler! Also, several weeks ago, we met with a genetics specialist to have some testing done. There is a genetic chromosome change that is linked to having kidney dysfunction. Theo has this specific change, the question is – is it genetic or from the leukemia? Testing revealed that the change happened as a result of the leukemia. So Theo is not likely going to have any kidney problems or dysfuction in the future. Just think, that in maybe the next ten years, doctors will have the ability to know how each patient will respond to drug therapy based on their genetics. We will know what illnesses we are predisposed to based on our genetics and how to treat them accordingly and so much more! It simply blows my mind away.

I never realized how many battles there would be to fight in this journey. I naturally thought of just the one big FIGHT AGAINST CANCER. But what about all the other hidden booby traps and road blocks that we encounter along the way? Each win is such a huge victory. Keep it coming. Keep putting out those good vibes everyone. The world needs it now more than ever.

“Hope is the thing with feathers, that perches in the soul, and sings the tune without the words, and never stops at all” -Emily Dickinson

28 Days Later

A big reason I created this blog was to keep everyone up to date and informed on how Theo is doing. The most common text I get from friends and family is “How is Theo doing? How are you?” Those are such difficult questions to answer. If I truthfully answered those questions every time someone asked I would never stop texting or looking at my phone! I hope this blog can be a way to answer those questions. Only problem is that I haven’t given any updates!! Ok, so I am a bit behind schedule. The first month was such a blast into leukemia outer space that I had to wait to come back to earth before I could put my thoughts together and focus on writing. With that said, I present to you the first update. Where were we? Oh yes… Theo was in the ICU. On Tuesday, Jan 14th, 2020 Theo was discharged from Seattle Children’s Hospital. We left the hospital knowing of the hard road ahead but unaware of what that REALLY meant for us. What I’m about to tell you is what that road looked like over the following 28 days. Lucky for us, unlike the movie, we did not encounter any chimps with the “rage” or have to fight any zombies. But it was still scary!

Let me first begin with a (hopefully) quick and very basic introduction to how leukemia is treated. Leukemia is cancer in the bone marrow. There is no “one size fits all” treatment of course, every case and individual is different. Protocols may change along the way depending on how individuals respond to treatment. Acute lymphoblastic leukemia (ALL) is treated with chemotherapy in phases: induction, consolidation, interim maintenance, delayed intensification, then maintenance. Each phase can last anywhere from four to six weeks, except maintenance which last two or more years. Chemotherapy drugs and other drugs used may vary and change from phase to phase. The goal being to “trick” the leukemia cells, coming at them from every angle… like a full court press. You wouldn’t believe how smart and sneaky those dang leukemia cells are!! A central line is needed to deliver many of the chemotherapy drugs into the bloodstream. A central line is a small tube that is surgically placed and can stay in place throughout treatment. For the first three weeks Theo had a central line in his arm that we called the “super tube”. We had to flush the line every night with extreme caution to not make mistakes that could lead to infection. Very stressful!! On February 11th, 2020 Theo had surgery to have a Port central line placed. It is surgically placed into a large vessel near the heart with a reservoir placed just under the skin on the upper chest. On days when it is not in use, there is no tubing hanging out of the body. This is the best time, when Theo can enjoy a long bath or shower, and even go under water. No plastic sticky covers to worry about getting wet! When it needs to be used, a needle with tubing attached is placed through the skin into the reservoir. Throughout treatment blood counts are constantly being monitored. Blood counts are a blood test that measures how many red blood cells, white blood cells and platelets a patient has. Chemotherapy kills the ability for bone marrow to make these cells. It is common for patients to need red blood or platelet transfusions when blood counts are low. Infection fighting cells (first responders), called neutrophils, will also drop during chemotherapy, putting a patient at high risk for infections. Treatment may be delayed if blood counts are too low. At the end of the induction phase a sample of bone marrow is taken to check for any remaining leukemia cells. This procedure determines what is called the minimal residual disease (MRD). If the MRD is ZERO leukemia cells… hooray, the patient is in remission! Following phases must be completed, otherwise the leukemia cells will likely return. All together treatment is expected to last 2-3 years (longer for boys).

Attached is a photo of Theo’s treatment roadmap. Confusing? Absolutely. It only took three explanations from Theo’s doctor to finally understand it all. Due to the Philadelphia chromosome attached to his leukemia cells, Theo’s phases are longer and more intense. The first 28 days were Induction 1A Part 1 and Part 2. Theo is currently in Induction Part 1B. Still with me?? Ok then, grab some tea or coffee, or something stronger perhaps! Now we get into the actual story telling.

Leaving the hospital we had no idea just how challenging it would be for Theo to take medicines and how many he had to take at home every day! The nurses gave Theo his meds every day while in the hospital in the beginning and it seemed easy enough. That’s what we expected… go to the hospital for meds, right? Wait, WE have to give him medicine at home?!? The two hour training we had with the pharmacist gave me a clue but that didn’t help prepare us for the overwhelming stress and panic of “medicine time” we soon started to experience at home. Before Theo went in for his last lumbar puncture procedure (chemo delivered to his spinal fluid) the nurse casually mentioned to me that the doctors could also insert a tube through his nose while he was asleep, for easier medicine delivery. I thought “wait, should I be worried about giving him his meds? Why are you mentioning this now, is that normal?” Now I see the benefits of it. But of course at the time we declined… “oh no, we got this!”

In the first 28 days, Theo was taking up to 10 meds a day. Some easier than others but all tasting pretty bad. We used it all: ice cream, juice, apple sauce, syrup, yogurt, lollipops. If only “just a spoon full of sugar” could help these medicines go down. Mary Poppins we need you!! Medicine time became this major stress of the day, almost causing Theo to have a panic attack. I dreaded it and would plan in my head this new easy approach that would make it sound “fun” or “easy” but that didn’t seem to help. How am I supposed to do this? Oh, just all of a sudden this is a totally normal thing where we take all these icky meds every day, woohoo!!

Just when I thought it couldn’t get any harder, a new drug was introduced two weeks after discharge: imatinib aka “water medicine”. It is the only known drug to kill the Philadelphia chromosome attached to Theo’s leukemia. He has to take it every day for the rest of treatment and it comes with a very pretty and massive price tag. I am ashamed to share my worst moment with Theo but here it is. Because he cannot swallow the two and a half pills of imatinib (yet), it must be diluted into a full glass of water and finished within 15 minutes, before the drug loses its effectiveness. It tastes awful. Theo was having a particularly hard time one day. He was stalling, complaining, taking tiny sips, there was no way we would finish in time and we were going to have to start all over. I was doing my BEST to stay calm. We were both raising our voices frustrated with each other as I urged him to hurry up. While trying to give him a rushed sip, Theo started coughing and the water spilled all over him. I immediately got upset and lost my temper. I had it!! “CRAP!! Theo!!! Take the %$&# medicine, it is going to save your life!” Of course Theo started crying. And then I felt like a total failure. Way to go me.

Now, let me tell you about steroids. Attention everyone: steroids are awful. At least when taken by a four and a half year old for 28 days straight! Steroids made Theo moody, cranky, irritable, HUNGRY, and worst of all… weak. Theo lost all ability to walk, even stand, for about four weeks. Steroids wiped out his muscle strength in his legs and arms. It got to the point where we had to pick Theo up out of bed and carry him to the bathroom toilet seat. Talk about a good workout, carrying a 45 pound kid around! We were told that all of this was completely text book and his strength and mobility would return within several weeks after steroids ended. We had to stay close by at all times, in case of emergency. Usually the emergency was a food craving. I have never before seen a kid eat so much in my life. I’m talking salami 24/7, rice at 3am, three chicken legs for breakfast and more! Theo’s taste buds changed, his cravings were random but very specific. For example, this is what he ate one morning for breakfast: six chicken nuggets, strawberries, apple, green beans, and TWO ham and grilled cheese sandwiches. We spent our days cooking and preparing food, nonstop. Grocery runs daily. Theo’s mood swings got the best of me. I could not take another eye roll. Where was my sweet sensitive silly boy? I was constantly told “do not look at me” “do not talk to me” “do not touch me”. It hurt bad and I had to believe my husband when he told me it was the steroids, not Theo. Thank goodness he was right. 28 days later… Theo finished Induction 1A part 1 and part 2, as well as the steroids. We then saw him slowly make the transition back to himself. Oh yes, he’s back stronger than ever!!! At the end of Induction A, Theo had an MRD test. There was 0.06% leukemia present, which is very good! For Theo, the goal is to have 0.05% leukemia at the end of Induction part B so he can be out of the high risk treatment group. He’s almost there. Sounds like a win, and what do we do with a win? We celebrate!!!!

“Now don’t be angry after you’ve been afraid. That’s the worst kind of cowardice” – The Jungle Book

Dear Daunorubicin

I’ve been waiting and wondering when the sun will rise. While I wipe the tears from my burning red eyes. My life, the world flipped upside down. Instead of earth it’s me spinning around. My heart is bleeding, cut open wide. There is nothing left, I am empty inside. Please, someone let me out of this cage. I will give anything, pay any wage. Now knowing how good life was before. I long for a hard day at work and a morning rushing out the door. The things I used to worry about and thought were so bad. Are the things I want now, the worries I wish I had. There is nowhere to run, no place to hide. So I wait for the sun with Daunorubicin by my side.

*Daunorubicin is a chemotherapy drug. Theo likes that it turns his pee a “pretty” orange/pink color.*

I wrote this poem sometime within the first week or two of Theo’s diagnosis. The dark days. I want to make it clear that this poem reflects my feelings at that time, but not currently. In the beginning, I was fearful of anything being too good. Theo responding well to treatment, receiving a good report, numbers back up… in some odd way I would expect that any good news would not last, that something worse would happen as if trying to protect myself. I wanted to always be prepared for bad news because I just couldn’t take another knife to my stomach.

Well, I am over that now. Time heals us and my feelings have evolved. I have come to accept what is happening, knowing that there is a plan. I need to stay strong and positive for my son. There is no time to waste on bad feelings or energy. Life is too short.

Celebrate the small wins!! He took his medicine without crying? Great! He had a soft poop? Woohoo! He doesn’t need a blood transfusion? YES. Nothing else matters to me. Theo and his health and happiness are all that matters. My family matters. So now, I enjoy a good laugh, eat a good meal, and have a good workout. When Theo is having a good day or has even a moment with a smile, I must enjoy it and soak up every second of happiness. I’ve learned to find peace and joy in not planning or constantly thinking of what the future holds. How will he feel next week? What if he gets sick? What if I get sick? What if anything! I can’t worry about what might happen. Are we going to buy a house this year???? I DON’T CARE. What are we doing this weekend? I DON’T CARE. Take away the unnecessary stress.

And just one last thought before I give you some actual updates: Do you live your life like you’ve survived cancer? I can’t wait for Theo to beat this so he can enjoy a full life ahead, experience, learn, play, grow, see… had I been a kid with cancer, my parents would’ve wanted the same for me. Did I take advantage of my life the way I wish for my son to one day??? We have all beat cancer… who’s to say we won’t get it one day? So until then, we have beat it. Be happy, enjoy living cancer free. Do what you wish to do now that you don’t have it!!!!

my super hero

“There,” said Toad. “Now I feel better. I am not in the dumps anymore.” -Days With Frog and Toad

From the Beginning

On January 9th, 2020 my son, Theo, was diagnosed with leukemia. Nothing has been the same since. Did we miss something? Is this genetic? Should have we done more? These are some of the questions that first popped in my mind. The simple answer: the causes of childhood cancer are unknown. Basically, it’s just bad luck. No one knows for sure when it began. No one missed anything. No one could have prevented this. So now I will share how it all started, the signs and symptoms… from the beginning.

Looking back at some of Theo’s symptoms, it all makes sense. His growing fatigue, pale peaked skin, random pain in his joints and that never ending cold. Theo developed a bad cold in early November that never completely went away. You know the kind. It gets a little better then comes back even harder, and continues like a roller coaster for the next couple of months. He later complained of ear pain and headaches just after Thanksgiving. His ears were so clogged he could barely hear. Three visits to the pediatrician confirmed it was just a bad cold. Totally normal, after all, it’s cold season!! So naturally I start to feel like a hypochondriac mother and tell myself to stop over worrying about everything. Even while spending two weeks in Mexico over the holidays Theo was showing more signs that I dismissed as him still getting over that bad cold. He had little interest in playing on the beach, always cold even in 80 degree weather, asking to go to bed early, pale skin after days of sun (and Theo tans very easily). Then when we returned home he had a fever, bloody nose and red dots on his chest. He was so exhausted he couldn’t even climb the stairs in our house. Ok, now something was definitely wrong. We went back to the pediatrician, this time determined to figure out what was wrong. I believe the doctor knew it was leukemia when he saw the red dots, called petechiae, but played it cool to keep us calm. He sent us to Seattle Children’s hospital to have some blood tests and informed us that “there may be a very small chance that depending on the results, we go into the emergency room tonight”. What?!?!? The thought of cancer had not even entered my mind. And I wasn’t about to let it then either. But of course we all know now that it indeed is cancer. It wasn’t until two hours later, when we were back in the emergency room and I heard the doctor say the word “leukemia” that it finally hit me. Like a knife in my stomach, it was the worst pain I have ever felt. The darkest scariest night of my life. This could not be happening, not to my sweet boy, why why why why ?????

Theo stayed in the ICU for the next couple of days. Over the next 48 hours I slept maybe four hours. It’s all such a nightmare, a blur of extreme sadness. It took me a week to be able to even say the word “leukemia” without completely balling. We must have met dozens of nurses, doctors, social workers within those first 48 hours and been given an encyclopedia of information about what was happening and why. An overwhelming amount to take in when you are trying to process that your child has just been diagnosed with cancer. There’s no time to think or feel. Just accept it and take it one day at a time. ONE DAY AT A TIME.

“You realize the sun doesn’t go down. It’s just an illusion caused by the world spinning around” -The Flaming Lips

Welcome

Big doors are opening…

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.”