The Great Outdoors

When I grow up I want to be a…

Go on, complete the sentence. What do you want to be when you grow up? Already a grown up? Well then, when you were kid, what did you want to be when you grew up? Take some time if you’d like to think about it. Really think about it. No matter your age, no matter your current occupation, no matter your situation. Remove the past and go back to the time as a kid when you felt excited to be that something. Perhaps you ARE that something you always dreamed of being. Or maybe you are on your way there. Of course our goals and dreams may change as we age and mature. Or we discover new passions along the way. Maybe you followed the steps to a more “practical” job, an easier faster way to make money. Maybe the realities of being an adult, having a family and a mortgage to pay changed your priorities and need for stability. Maybe what you want to be is not a job at all, but a way of living, an idea, a feeling. As a child, everything is so simple. Black and white. Right and wrong. Good guys and bad guys. Untainted by the harsh realities of such things like peer pressure, deadlines, power, politics, and war. A child’s innocence is so beautiful and delicate. Never lasting as long as we hope it will. Life happens. But we never stop learning, exploring, and experiencing. Theo will tell you today that he wants to be an exploring chef. Travelling to far and distant places to find ingredients for his famous recipes. The excitement he has when Luis (our chef) starts cooking a meal is incredible. Always ready to add spices and herbs. Whether his body is capable of eating or not, his mind is ready to create delicious food. Will it last? I hope so. But it’s not the what that matters. It is the who. What he wants to be might change several times throughout his life. Who he wants to be is forever in his heart…. a creative, sensitive, loving human.

Interim Maintenance schedule

Welcome to Interim Maintenance. In this phase you will see smiles, laughter, and beautiful scenery. Enjoy the ride. No, this is not a joke. We were told this is the easiest phase of treatment. At first Luis and I believed the doctors, but then after going through everything that’s happened, we weren’t so sure anymore. We were expecting the unexpected. Well, we are two weeks into this phase and to tell you the truth, this has been the most “normal” life has felt since Theo was first diagnosed. (Also because we are so used to the routine of medicines and dealing with the NG tube by now.) If it weren’t for the NG tube you would not even notice that Theo has leukemia. His energy is through the roof. His hair is growing back (yes, even those long eyelashes) and he started online kindergarten. Interim Maintenance lasts four weeks total. There are three medications, all taken orally. Every night he takes Imatinib (nothing new) and Mercaptipurine, his favorite. Mercaptipurine is the ONLY medicine he actually enjoys tasting. He prefers to drink it instead of us putting it through his NG tube. Every Tuesday he gets six pills of oral Methotrexate. This is the only medicine that has the potential to cause some nausea. So far, so good. The only down side? No back pokes in this phase! Theo asks every day, “how many more days until I get a back poke?” So while we are loving and soaking up every second of this phase, Theo is counting down the days until Delayed Intensification #2. Oh please, not yet!

The other common question we get asked by Theo these days: “When will I be in Maintenance?” Hmmm… that’s a great question! A few months ago, by my calculations, I would have told you that Theo would be in Maintenance by December. However, treatment has been delayed four weeks in the last couple of months. It was delayed two weeks after Delayed Intensification Part 1. It was delayed another two weeks after Delayed Intensification Part 2. Luis and I were shocked that we had to wait two weeks to start Interim Maintenance! Theo’s bone marrow is getting very tired. I couldn’t believe his numbers were so low. In those two weeks being delayed, Theo needed one blood transfusion and two platelet transfusions. He may have been feeling good, but his bone marrow was dog sick and wiped out. His platelets were so low before his first transfusion that even after receiving platelets, his port access site would not stop bleeding! On the car ride home, Theo complained of being hot and sweaty, saying his shirt was even wet with sweat. When I unbuckled him I noticed the belt was wet. I thought, gee he really is sweaty. Nope! The blood had soaked through his clothes, even down to his pants. About six more gauze replacements with some added pressure on top finally made it stop. Had he gone through one more gauze he would’ve had to go back to the hospital for another transfusion. So, to answer the question, when is Maintenance? I have no clue. Theo has Delayed Intensification #2 after Interim Maintenance, which means, more delays. Especially with Theo’s bone marrow being so fatigued. But we won’t think about that right now. Let’s just focus on this phase. This time, this day, this moment.

Like I said, life feels “normal” or as normal as it can be during a pandemic. We actually leave the house now! I know, it’s really something. Going places other than the hospital is very exciting. And not just for a quick around-the-block stroll. I’m talking actual adventures. Theo used to only be able to handle about 30 minutes in the car before he started to feel sick. If he went outside to play he would crash after only 15-20 minutes then spend the rest of the day in bed. Now, a two hour drive doesn’t phase him and he has energy to keep going all day! Theo is also doing online school. Quite the opposite from his ten hour days in preschool with friends, but at least he is excited to be in kindergarten and is an avid learner. His school is 100% online with Monday zoom meetings with his class. School lessons and having a routine is important, but so is getting outside to have fun. So if school work is done at 4:30pm instead of 10am because we decided to go on an adventure… who cares?! We are taking full advantage of these feel good days. Going to the beach, the mountains, hiking (kid friendly), and lots of sports outside. That means he is back to riding his bike and playing just about every sport he possibly can while the sun is up. Oh no, it’s raining? No problem. Uh oh, hail? Even better. Theo is unstoppable these days. The bigger the puddle to jump in, the better. Luis has a ton of “secret” places to find treasure. So we took a drive one day heading east on I-90 and stopped at Lake Keechelus to go exploring. The water level is so low this time of year that you can walk for hundreds of yards along the rocky sandy muddy floor. Theo was like a child on Christmas morning. His eyes open wide in amazement and wonder. I swear you could see the wheels in his head spinning in overdrive. It was the best day, finding cool rocks, getting our boots stuck in mud, throwing sand (mostly in Luis’s ear), making bridges out of rocks and sticks to cross creaks too deep to step in, and hardly a person in sight. Oh… did I mention the beautiful sunny warm weather? Let the good times roll.

Lake Keechelus

Theo has grown a tremendous amount, mentally and physically, through all of this. I hardly recognize him from pictures taken last year. Who is this big boy talking to me about the king of Sparta, Leonidas? I’m amazed how he remembers the names of all the historical figures from the stories Luis tells him. My stories are always an absurdly comical tale of talking animals or some silly event. Luis is the master of real story telling. He doesn’t just tell a story, he makes magic happen. Eager to share his love of history with Theo. So alike, those two. Sometimes Theo seems so adult like. He will start talking to any person about his cancer, totally out of the blue. The lady in the coffee shop, the woman walking her dog down our street, the comcast guy… he has told all of them his story. He tells them what his NG tube is and why he has it, what medicine tastes the yuckiest, what a port is and how he gets his “button” on for chemotherapy and sometimes blood or platelets. He talks to adults (relatives and complete strangers) with such ease. I suppose, that when the only other people you spend time with outside your family are adults, that is bound to happen. His interaction with other kids is next to nothing. For as strange and different school is these days, at least he gets to see other kids through his class zoom meetings. He calls them his friends even though they have never met. I don’t know when or if he will get to meet them. Fortunately, he has a handful of close, loving, wonderful friends that he gets to see from a distance or have video chats with every now and then. Each time he connects with a friend it makes the light in his world shine a little brighter. Every prayer, thought, and message we receive from friends and family makes our world shine a little brighter, too. So thank you, all of you, for your gifts, thoughtfulness, and prayers.

The very first week Theo was in the hospital was all a blur. We met so many doctors and were fed so much information while trying to cope and process such devastating news. Like we were given a crash course in how to be pilots, expected to fly a plane without ever being in the cockpit. It feels like it’s been years since this all started. The hospital visits, the NG tube, getting admitted, taking new medicines, managing the side effects, etc. It all seems so routine now. The very first night, when a doctor told us that Theo had leukemia, I completely lost it. With a waterfall of tears, I covered my face and told her, “I can’t do this”. She hugged me so tight and said, “YES you can, you HAVE to”. That has stuck with me ever since and I will never forget it. When I look back at the hardest days I feel proud. Proud of Theo, for his courage and optimism. Proud of my husband, for never letting us drown. Proud of myself, because I AM DOING THIS. This much needed break from intense chemotherapy and hospital visits has us moving forward with our heads raised a little higher, our spirits fuller, and a hearts stronger. We are ready for the journey to continue. Though we’ve come this far, I know we still have miles to go. The finish line is not yet in site but it’s reassuring to know we are capable and strong enough to handle anything that comes our way. To infinity… and beyond!

Kingston, WA

“It takes courage to grow up and become who you really are.” -E. E. Cummings

Dazed and Confused

“To a parent, your child isn’t just a person: your child was a place, a kind of Narnia, a vast eternal place where the present you were living and the past you remembered and the future you longed for all existed at once.” (NG, 2017, p.122)

You may have heard of the book, Little Fires Everywhere, by Celeste NG. (Just about every nurse and doctor in clinic has). For those of you who haven’t, I think this book is worth reading. Recommended to me by a close friend almost one year ago, I had been meaning to read it for some time. When Hulu recently made it an original series, starring Reese Witherspoon and Kerry Washington, I could not delay anymore. An easy and captivating read that became my escape for the past couple of weeks. The book that allowed my mind to travel somewhere else. With every hospital visit came a slight tinge of excitement to read a little more while Theo watched a cartoon or colored while getting Cytarabine. It was an early morning at the hospital during one of these appointments that I turned to page 122 and began to cry. Maybe I was extra tired or maybe I’m just a little more emotional these days. It just felt like that quote had explained exactly how I feel about Theo. Like I had been searching for a way to describe how overwhelming all of this is and then suddenly, there it was. My fear, my anxiety, my worry about Theo. His past, present, and future all swirling around in my head all at once all the time. It is all I think about. It has consumed me like a raging fire. There is no room for anything else.

Delayed Intensification Part 2

Delayed Intensification #1 is over. Yes, even Part 2. Next up is Interim Maintenance, then Delayed Intensification #2. Wow, how time flies when your’re… going to the hospital! Because that is exactly what we did. We were there 10 out of 14 days. Part 2 started with a lumbar puncture, aka back poke, of Intrathecal Methotrexate, Theo’s favorite. In fact, he even told one of the nurses before going into the sleepy time room, “I wish I could get a back poke every day.” Theo chooses a new stuffy to join him and Bobo (his monkey stuffy from Mexico who never misses an appointment) each time. Like they’ve just won the lottery. He believes they all deserve a chance to go to the sleepy time room. Yes folks, it’s that good. If you could see the look on Theo’s face as he’s falling asleep. All pain and agony completely erased from his body. Theo is literally floating high in the clouds. The best he has felt in almost one year. No wonder he loves it so much. Part 2 lasts a total of two weeks. Each week starts with a back poke. Cyclophosphamide is given on day two only. Cyclophosphamide can be hard on the kidneys so it’s important that it’s given with a lot of fluids. Theo has to pee a certain volume before fluids can be stopped, making it a seven to eight hour day. Cytarabine is given four days in a row during week one and week two. A drug called Thioguanine is taken orally every night at home along with, you guessed it, Imatinib. Hmmm this all sounds so familiar. Wait, was this the exact same chemotherapy schedule as Induction 1B? YES. Exactly the same, except for the Thioguanine. I searched my memory for those two weeks back in February when Theo received this chemotherapy. Sweet. As I recall, Theo handled it exceptionally well. Nausea was controlled with only two doses of Zofran a day and he had maybe a handful of episodes where he felt brief mild pain in his legs. Easy peasy lemon squeazy. Theo started Part 2 feeling strong, hungry, and energetic. Theo ended Part 2 feeling exhausted, weak, and in a lot of pain. What happened?? Eight months of chemotherapy is what happened! Eight months of getting beat down. Eight months of his bone marrow fighting and working on overdrive. Eight months of his body having to constantly repair itself after being torn up inside. The chemotherapy was the same, but Theo’s body was not.

Theo eagerly waiting to be taken to the sleepy time room

The past two weeks have been full of surprises. NOT the good kind. Chasing nausea, new skin allergies, piercing headaches, mouth sores, and to top it off, a trip to the ED. The past two weeks have felt like two months. Let me break it down. I’ll start with the nausea. His nausea has definitely changed. No warning, no “feeling icky” creeping up. One minute Theo would be feeling fine, then bam! A moment later he’d be throwing up. Obviously Zofran twice a day did not cut it. So we bumped it up to three times a day. Nope, still not good enough. How about adding Benadryl and Reglan and alternating it with Zofran every four hours? Still not good enough. FINE, Ativan it is. Ativan is a controlled substance; a strong drug we usually try to avoid if possible. But a loopy goofy Theo is much better than a nauseous one. Finally, no more getting sick. It took alternating all three ant-nausea meds every three hours for two weeks straight to keep the nausea under control. And thank goodness we finally figured it out. Theo’s doctor told us that this is very normal. In fact some kids have to be admitted to the hospital to receive IV anti-nausea meds because their nausea is so severe. At least we got to stay at home. This is when I have to tell myself, as bad as we have it… it could be worse.

Then there were the issues of skin allergies. Every time Theo gets accessed (aka getting the “button” on), a dressing, made of a material called tegaderm, is placed over the access site to protect it from germs and keep it clean. At the end of infusion there are two options: Stay accessed or get the button off. Theo prefers getting de-accessed every day. He would rather go through the whole process of getting the cream on, having the site cleaned with chlorhexidine swabs, and then get poked every day than have to sleep with the tubing attached to him every night. By day four of Part 2, Theo had developed a blistering rash next to the access site of his port. He has had redness and irritated looking skin before, usually after having the dressing over his port for many days in a row. It was determined by the nurse and doctor that it was likely an allergic reaction to the tegaderm dressing. Theo also had a bad red rash under the stickers on his cheek that hold his NG tube. Tegaderm allergy? Probably. His skin just decided it has had enough. (Haven’t we all?) So for the next ten days we applied a hydrocortisone cream to the rash and watched it slowly improve until it had finally almost healed. On the morning of day 15 of Part 2, Theo had an appointment. There was no chemotherapy scheduled, just a doctor visit and lab counts. When I applied the cream at 6am, the port site looked only slightly pink in some areas. When the nurse removed the cream in preparation to access Theo, the look on her face told me there was something wrong. The entire area where the cream had been placed was fire engine red! Oh brother, was it an infection?? (That would be a very big problem). No. Thankfully just another allergic reaction to the numbing cream. So now we have a few more names to rattle off when asked, “does your child have any allergies?” Again, it could be worse.

So moving on… another day, another appointment, another day with my little lovie. (Just don’t tell him I said “little”, he really dislikes that). On day ten Theo woke up with a mild headache. It didn’t last long and seemed to only worsen with sudden movements. It happened a few more times that day. Again, we were told it is normal. Things to look out for would be a change in character (ummm… he’s on Ativan so yeah, his “character” is a little OFF), projectile vomiting (well he would be if it weren’t for the anti-nausea meds), and inability to sleep (no trouble sleeping with Benadryl). We could give Tylenol to start but if that didn’t help, Oxycodone would be the next move. By day 12 the headaches were unbearable for Theo. He woke up at 2am crying in pain from the sharp pain in his head. Theo cried, “it feels like a rock is pushing through my head”. Great, finally off the Ativan just in time to start giving Oxycodone. Theo’s eyes were just beginning to look normal again. What I mean is, his pupils were not dialated, the gloss was fading, and his head was no longer in the clouds. But hey, you can’t mess with pain like this. Hazy eyes or not, Theo needed the Oxycodone. When the mouth sores arrived by day 15, it just gave us even more reason to keep him on it. It’s amazing how fast it works. You can see his entire body change. Physically and mentally. My days with Theo on Ativan and Oxycodine have been like being with a drunk five year old or Jekyll and Hyde. Sobbing uncontrollably for no reason one minute to being the silliest love bug the next. This little human with us was terrifying (yet hilarious at times). When you have a five year going through cancer treatment on controlled substances, nothing makes sense and there’s NO reasoning with him. Rules? What rules?!? Out the window. Seriously. All of our “rules” we have made for Theo over the years: not too much tv or video games, set bed times, eating at the table, not wasting food, etc. It doesn’t exist. Want me to tell you how many hours a day he plays his favorite Spider-Man video game? A LOT. And he loves it. The ONLY thing that matters these days: is he in pain? No? Okay then, play away my love… play away.

Don’t worry, I haven’t forgotten about our trip to the Emergency Department (ED). Here we go again. It could have been worse. Why? Let me tell you. Theo spiked a fever on a Friday, day 11 at 8pm of 101.2 degrees Fahrenheit. Cytarabine, the likely culprit, can cause flu like symptoms: fever, body aches, headaches. Theo had been in what we call the gray zone all day. That means his temperature was not high enough to go to the ED, but high enough that we could not give Tylenol and had to recheck his temperature every 30 minutes to one hour. But when it finally spiked we had no choice but to rush to the ED. Bags packed and ready to check into hotel Children’s. Theo’s neutrophils were 2,020 earlier that day so at least we knew infection was unlikely. The doctors looked for any other obvious signs of infection and found none. The blood sample that was taken (from the painful experience of getting accessed by a nurse who seemed to still be in training) showed no bacteria growth. Besides the fever, Theo looked good. An extremely unpleasant visit as always but we got to go home! Sure, it was 2am by the time we left, which, wouldn’t have been that bad except we had to be back in clinic the next morning at 8am for Theo to have a blood transfusion. It was a rough night. Nothing more, nothing less. It could have been worse.

When Theo was first diagnosed, we knew that he would need full time care. Being Theo’s nurse is my new full time job. When you spend every… waking… moment… with your sick and needy child, during a pandemic, isolated in a bubble, it will swallow you up whole and land you in the belly of a whale. And when I say needy, I mean it times one million! When we are not at the hospital, we are in our little bubble, aka the bedroom. Leaving the bedroom requires Theo’s approval, like asking for a hall pass. If I’m gone too long (more than five minutes) I hear him calling for me. But can I blame him? He doesn’t feel good! He has NO ONE else besides his mama and papa to be with and play with! WE are his everything. I can’t believe I used to be away from him ten hours every weekday. I never dreamed I would be so lucky to be able to spend this much time with our boy, our everything, especially at such a fun sweet age. But I want my Theo back. I want the Theo who I get to go swimming with. The Theo that loves to and is able to eat good food. The Theo who instead of getting excited for the sleepy time room, can be excited for a trip to the zoo. The Theo who isn’t always having to deal with pain and learning about his emotions at the same time. I know we will get out of this one. I know one day Theo will be too busy with friends and I will be begging for endless snuggles and Theo’s calls for me to be near. I know one day Luis and I will have more than five minutes to ourselves to talk to each other about things other than Theo… and listen. But for now, this is our Narnia, our journey. We will wake up to another day in the whale’s belly, holding on to every laugh and every snuggle with our baby boy before we get released back into the deep wild ocean.

Fancy dinner requires fancy clothes

“Things never happen the same way twice, dear one.” – C. S. Lewis, Chronicles of Narnia

Theo’s Story

Hi my name is Theo, I have a story to tell.
About why I go to the hospital so much, and it’s not because I fell.
It started back in December, I was only four years old.
I wasn’t feeling great, the doctors said it was a cold.
In January I was still sick, my face was as pale as a ghost.
No energy to play on the monkey bars, the activity I love the most.
I went to see the doctor again, I thought, is this a joke?
He said I needed to get blood drawn, then I got FOUR pokes!!!
I got poked again in the ER, that time wasn’t as bad.
Because they used numbing cream, and let me look at an iPad.
I had to stay in the hospital, for about a week or so.
I was told I have leukemia, which is cancer of the bone marrow.
My mom and dad were worried, so shocked that I had cancer.
They wanted to know why I got it, unfortunately there is no answer.
Now I need lots of medicine, called chemotherapy.
Each phase of treatment is different, lasting two years maybe three.
At first I had a tube, that was put into my arm
Used for medicine delivery, so my veins would suffer no harm.
But now I have a port, it was placed under my skin.
A bump next to my heart, that’s where the needle goes in.
I also take other medicine, some in liquid form or pills.
They taste so terribly yucky, the flavors give me the chills.
But now I have an NG tube, for medicine to go through.
I don’t have to taste anything, it’s so easy now, who knew!?
I have so many appointments, some last all day long!
Especially if I need blood or platelets, to keep me feeling strong.
I am also bald, no hair on my head to be seen.
It’s from a medicine, a side effect of Vincristine.
Sometimes when I get sick, after chemotherapy
I don’t feel like eating or walking, it takes away my energy.
That’s when I take formula, to get the nutrition I need.
It goes through my NG tube, a motor pumps the feed.
My temperature is checked, in the morning and at night
Because if I get a fever, it means something is not right.
My immune system is weak, not like how it was.
All cells good and bad are killed, that’s what chemo does.
My body cannot fight, bad viruses and bugs.
So I have to be extra safe, no high fives, kisses, or hugs.
When I do get infections, I stay in the hospital.
It can take days, even weeks, for my body to fight it all.
I can’t wait to go to the aquarium, and see my friends at school.
I miss going to the zoo, and swimming at the pool.
But going to the hospital, isn’t all that bad.
The doctors and the nurses, are so smart, kind, and rad.
They work so very hard, taking care of kids like me.
They are like super heroes, that’s what I want to be.
I know it will be soon, when my treatment is all done.
Feeling strong and healthy, back to ME having fun!!!

We are sailing along the ocean, nothing but blue skies all around. Sipping champagne in our bathing suits and sampling fresh oysters from the sea. Tropical fish swimming below us, a bright yellow sun above us. The smell of salt water and sun tan lotion inhaled with every breath. I jump into the water making a big splash, so refreshing. Floating with such ease, like in a lounge chair. “BEE-BONK! BEE-BONK! BEE-BONK” What in the…?!?! Ugh, it’s the feeding pump alarming to tell me there is a kink in the tube again. Okay Okay! Here I come. Awake and now very grumpy, I press the pause button on the motor and search for the kink that has formed under Theo’s cheek from turning his head while asleep. There, all fixed. I press the start button on the motor and go back to my fold out hospital bed. It’s 2 am. I have another two hours until the nurse comes in to take Theo’s vitals and turns on that obnoxiously loud blood pressure cuff. Two more hours to drift back into my dream of sailing. Now, where was I? Ah yes, I was floating…

Theo has completed Part 1 of Delayed Intensification #1. Part 2 is scheduled to begin on day 36, but only if his neutrophils (ANC) is above 500 and his platelets are above 50,000. A few weeks ago I would’ve told you (and likely did) that Theo will have no problem getting through this phase. That this phase is easy and therefore it is unlikely that we should encounter any delays. Today, I will tell you the opposite. It’s called Delayed Intensification because the most intense side effects of the chemotherapy drugs are delayed. That sneaky Doxorubicin. And here I thought all along it just caused a little nausea. That explains everything! It explains why we didn’t have any issues until AFTER week four. Like, Theo’s ANC tanking to nearly zero. The bilateral ear infection. And the fever that led us to a ten day hospital stay. Surprise! Turns out Theo’s doctor was right all along. This phase is not easy. It has its challenges for sure, it just took some time for them to be revealed. Like a small hole in a boat. Give it time for water to leak in and the boat will eventually fill up with enough water to the point of sinking!

On Tuesday, August 4th (Day 29 of Delayed Intensification #1 Part 1) Theo went into clinic for his last dose of Vincristine and Doxorubicin. Up until then his ANC was still very high, well above 1,000. By day 29 though, it was starting to drop, and fast. One more dose of chemotherapy would only make it drop more. Theo’s doctor noticed that both of Theo’s ears were very red and irritated. She was worried that it was the start of an ear infection. Concerned that the ear infection could land Theo in the Cancer Care Unit, she confirmed that the antibiotic he was already prescribed would help prevent the infection from getting worse. Needless to say, we were warned…again. The next morning Theo had a high temperature. Not high enough to rush to the hospital, just high enough to put us on edge, bite our nails, and say a few Hail Marys that his temperature would go back down. Well it didn’t. It reached 100.5 F and stayed there for one hour. I called the Hematology/Oncology clinic and they instructed me to bring Theo in. We had 30 minutes to get there, otherwise we would have to go through the Emergency Department (ED). We packed liked maniacs and flew out the door.

The doctor we saw in clinic told us that she did not expect us the be in the Cancer Car Unit for long. There was no urgency for him to be admitted right away. But his ANC was dropping and based on the redness of his ears, she thought it was better to be safe than sorry. “It may just be one night, maybe two” she said. We agreed. There was a good chance that if we went home, Theo’s temperature would go up even higher and then we would have to come back to the hospital again, but through the ED, which is never ideal. We were already there and besides, it’s only one or two nights anyways, then we’ll be back home. Theo looked healthy. He had energy. He was having no pain and his nausea was under control. So WHY did he need to stay admitted for ten days?? That’s exactly what we were scratching our heads about. The lead doctor in the Cancer Care Unit gave it to us straight during rounds the next morning. Theo’s ANC was below 200 and continuing to drop. He had a bilateral ear infection that his body could not fight. He would need IV antibiotics until the infection cleared and his ANC returned to at least 200. When an infection is present in someone who is neutropenic, ZERO risk can be taken. Without IV antibiotics the infection can easily worsen and move to other parts of the body. Being at the hospital would be the safest.

Just to be clear. Being admitted means that Theo becomes “inpatient” and has to be transferred to the Cancer Care Unit. Located in a different wing of the hospital, it has it’s own specialized staff of rotating nurses, doctors, fellows, residents, and nursing assistants. We enter the hospital through a different entrance and carry a separate badge to get in. The doctors in the Cancer Care Unit communicate with Theo’s doctors from the Hemotology/Oncology Clinic daily. The doctors in the Cancer Care Unit, however, do not know Theo the way his doctors know him. Every day while admitted we meet a new face, someone assigned to Theo’s team for the next day or two. We go through the routine of introducing ourselves and then answer the same questions we have been asked by everyone else. They say hello to Theo, listen to his heart and lungs, do a visual exam, ask us how he’s doing, then leave. It is rare but sometimes we get the same nurse two days in a row. For these reasons it is especially important to… you guessed it… ASK QUESTIONS. We need to be on top of it and pay very close attention to everything that is going on. And when in doubt, call Theo’s doctors from the Hematology/Oncology Clinic!! Just because we are not in clinic doesn’t mean we can’t ask them questions. After all, they have been caring for Theo through it all, since day one, “our people”.

Theo had one traumatic experience while admitted that was unusual. A patient can only have the same access needle in their port for seven days before it is replaced for safety and infection control purposes. Theo needed to be re-accessed. Remember in my last entry I said that getting accessed was a non-issue for Theo? Well, not this time. After taking out his needle, the nurse applied numbing cream over Theo’s port site and returned in one hour. We informed the nurse that Theo needs longer than average (at least 1.5 – 2 hours) of the numbing cream sitting on his skin for it to get completely numb. She told us that the cream had been on long enough and that he should be numb. Prepping the access site begins with using chlorhexidine wipes over and all around the port site. Theo’s site had been bleeding from the last needle being removed and his skin was raw and red underneath from the dressing that had been covering it for the past seven days. Once the sting of the chlorhexidine made contact with his skin he let out a piercing scream and started yelling that his entire neck was burning. Next the port has to be felt, in order to know where to push in the needle. Theo’s skin was so sensitive he began screaming even louder as she pushed and felt around his port. Finally, the needle went in. And YES, Theo felt every bit of the needle stabbing him through his chest. For the first time in almost six months, no blood came back through the tube. The nurse had to take the needle out and do it all over again, starting from the very beginning. What?!?! We added more numbing cream, ice packs, and one dose of Ativan. FOUR tries and four hours later, his port was accessed. What a disaster. I don’t even think the Ativan took effect until 30 minutes after the process was all over. I could tell because Theo was extra lovey dovey with me all of a sudden. He held my face close to his, gave me a big smooch on the lips then said, “Mama, you have the prettiest green eyes”. Haha my little lover boy. Well, at least he was feeling better. What can I say? There’s never been an issue when getting accessed in clinic. Then again, the outpatient nurses in clinic access kids all day every day. Next time I will make sure to call on them if we end up admitted in the future. Being inpatient we still get spoiled by amazing nurses. It’s just a different environment. One of higher stress, unpredictability, and unfamiliarity. We are so fortunate for Children’s Hospital. For Theo to receive such outstanding care from some of the world’s best doctors. As much as we don’t like having to stay at the hospital, it is what Theo needs. It is what’s best for him and that is what really matters.

So there we were. Back at Hotel Children’s. Back to the routine of vitals every four hours, meeting new doctors and nurses, helping Theo to the bathroom while attached to an IV pole. Theo developed mucositis in his gut again, which led to complications like leaky diarrhea, painful pooping, and lack of appetite. It was the hot topic of conversation during doctor’s rounds every morning. I have never in my life imagined that I would talk about poop so seriously, so descriptively, so passionately as I have these past seven months. But hey, poop matters! Unfortunately, Theo is barely eating at all now so he is back to needing the feeding pump (bummer). And sadly we had to throw away several of his favorite underpants. Not fun… but it could’ve been SO much worse. We have reached the point now where we are so used to it all. What once felt like walking into a haunted house now feels like walking into IKEA. It’s just annoying. Even Theo has become more accepting of his time there. He stopped asking “do we get to go home today?” Instead he would ask, “are my neutrophils going back up?” He gets it. Theo has a very good understanding of what is going on. He is a great listener and observer. I have been called out several times for bending the truth to make something sound better in hopes not to upset him. “Oh I don’t think you have to get poked like that again” or “our next appointment might not be as long”. Usually it is because he is wandering if he is going to be in pain. I don’t want to tell him “yes, it will hurt” but it’s better for something to turn out easier than expected than vice versa. It is silly of me to think that I can sneak something by him. Like I’ve mentioned before, he knows more that we think. I have learned it is always BEST to be very direct and straight forward with him, no matter how bad the truth might be. I think the hardest part of being admitted, for Theo, was just being stuck inside that hospital room day after day. He had energy and wanted to go outside to play. He was not experiencing any pain or discomfort from the ear infections. He hadn’t had a fever since the day we were admitted. We found ways to keep busy with puzzles (obviously), coloring, card games, and his favorite: gym time. Theo loves going to the gym to play. It requires having an appointment with a physical therapist so he couldn’t go every day, but on the days he could go, it was the best 30 minutes ever. Theo is five years old. He wants to play, run, battle, jump, and just be silly! That, my dear loved ones and friends, is pure joy.

Theo is himself. He is silly, playful, thoughtful, and witty. This is the BEST Theo I have seen through all of this. Despite the leaky diarrhea, heart burn, gut mucositis, and lack of appetite. He has maintained such a positive attitude and taken hit after hit like a true champion. Theo is our hero. If he can do it, then so can we. Luis and I are not always as positive as Theo. We don’t always know how to shrug our shoulders like Theo and just look ahead. We don’t always know how to get through this. THIS is hard. Crushing. Inconvenient. Emotionally draining. Theo keeps us strong. We continue to remind ourselves that if Theo can do this, then so can we! On the morning of day ten I called Theo’s doctors from clinic. One of them was actually already on her way to stop by for a visit. She could see how good Theo looked, his high energy level and good spirits. We both talked with his other clinic doctor on speaker and later that day he was discharged. ALL doctors agreed it was okay for Theo to go home. Just in time for Theo to cool off with a run through the hose, squealing and laughing with his BFF Bobo the monkey. Good energy? Oh yes, I think so.

“A true hero isn’t measured by the size of his strength, but by the strength of his heart.” – Disney’s Hercules

Food Fight

The sun is up, but it is still early. The birds have taken a break from chirping outside our bedroom window. I can tell by the brightness of the room and the stillness outside that it is sometime after 6am but not yet 7am. Theo is sitting up in bed. I can feel his eyes on me. I can sense that he wants something. I open my eyes and give him a smile. Yep, he is looking right at me. Food is on his mind. “Toasties and ramen… mmmm”, he says. Oh, good morning steroid brain.

Welcome to the next phase, Delayed Intensification #1 Part 1. I gotta say, so far so good (quick, someone give me a piece of wood to knock on). To be honest, we weren’t sure what to expect. Theo’s doctor asked me how I was doing during our visit on the last day of Consolidation. With a great big smile and sigh of relief I told her how happy I was that it was over. I was so relieved we were passed what so far had seemed to be the worst. The look she gave me in response was scary, like I was crazy. You know that look. You walk into a room of people who have just been told horrible news and there you are, all cheery and singing about what a great day it is. What’s with the long faces? Is it something I said? Well, apparently, for most of her patients, Delayed Intensification IS the hardest phase. The phase when they get fevers and have to be admitted, when they experience intense nausea. When they feel their absolute worst. But remember, Theo’s treatment is more intense and longer than average because of the Philadelphia chromosome. Perspective. Theo had it so rough during Consolidation that anything less intense feels easy! Whatever treatment the average patient gets, Theo gets it harder and longer. For example: Theo gets two extra weeks of chemotherapy in this phase. Theo also gets Delayed Intensification TWICE! So yes, for some patients, this may be the hardest, but for my super hero, Theo?? This is like working on a 100 piece puzzle after completing a 500 piece one… a piece of cake.

Okay, maybe not quite that easy, but easier for sure. Now you are probably wondering, what does Delayed Intensification (Part 1) look like anyways? For starters, it’s all done in clinic. (hooray!) Theo only has appointments on Tuesdays. ONE day a week (woohoo!) Of course, there will be other appointments further along to check for blood or platelets as his numbers drop. But for the most part, there is very little time spent at the hospital so far. So what do we do all day?? It depends on how Theo is feeling. How much energy he has. On days following his chemotherapy, he likes to “take it easy” doing puzzles (Theo is a HUGE fan of puzzles), playing his Spider-man video game, or talking to his stuffies in bed. He also naps quite a bit. No wonder. Chemotherapy knocks you out! On top of that, he’s gets anti-nausea meds every four hours for the first three days after (works like a charm). We alternate Zofran and Benadryl-Regaln every four hours. He tells me almost daily how happy he is that he is not throwing up anymore and that he does not have to taste the “icky” medicine. That’s a WIN! Then there are days when he gets a burst of energy. He wants to walk through Ravenna Park looking for ingredients to make soup for his sick stuffies. He wants to stroll to the icecream store, he wants to have a dance party. Earlier this week he went for a bike ride up and down the street. And get this: last week he walked home from the hospital, then ran up the hill to our house!! I couldn’t believe it. It wasn’t after a chemotherapy visit, we just went to go pick up meds from the pharmacy. We took our time collecting “art supplies” for our next art project. The sun was out. We had nothing but time. I swear a blue bird was on my shoulder. I felt like Mary Poppins when she jumps into the painting. All we needed was a carousel to magically appear and our walk would be complete. These bursts of energy are not long lasting, but long enough to see Theo get out and enjoy a little taste of summer. Delicious!

Whoa dude, what is that? I’m going to tell you what happens when we go into clinic on Tuesdays for chemotherapy. Don’t get too excited, Russell Wilson has yet to appear and take a picture with Theo. Everything is so “normal” to us, I forget to write much about it. The first appointment is getting his “button” on, aka getting accessed. This also happens so often that it has become uneventful for Theo. Basically every child being treated for leukemia has a port that has been surgically placed under the skin next to their heart. This is the easiest way to draw blood or give chemotherapy meds or transfusions. Chemotherapy meds cannot be given through a regular IV, as they can rupture veins. When patients are not accessed, there is no tubing hanging outside of their body. There is only a bump that you can feel under the skin. Patients can shower, swim, and do other regular activities without having to worry about covering up the access site. To be accessed means to insert a needle, with a tube attached, into the port through the skin (as seen above). Ouch! Well, not exactly. A numbing cream (Lidocaine) is placed on top of the access site one hour or more prior to the needle going in. For some kids that is enough, for others… not even close. Needles can be scary. I have seen plenty of grown adults FREAK OUT over a tiny needle. (Laughing gas anyone?) These kiddos have to get a needle inserted into their chest multiple times a week for years!! Thank goodness for Ativan (anti-anxiety med). And if that is still not enough, Children’s Hospital obviously is prepared with a team of friendly, comforting, well trained specialists who are there to help kids get through moments like these. They come armored with iPads, toys, stickers, games, you name it! Anything and everything you can think of to keep a child distracted and calm during times of stress or anxiety. Child Life, we love you.

Okay, so where was I? Oh yes. While Theo gets accessed he stays preoccupied talking to his stuffies or “the dudes” (Teenage Mutant Ninja Turtles) about what is happening. He actually likes watching and enjoys telling his stuffies what is going on to keep them calm. In fact, the only part he doesn’t like is getting the numbing cream on because it’s cold! It takes a total of about five minutes to access, draw blood, and cover the access site. The blood sample gets sent to the lab and we wait in the waiting room until our appointment with Theo’s doctor. About 30 minutes to an hour later we head back to another room after getting height and weight measured. We meet with the doctor to go over what’s happening, review questions, and so they can give Theo a physical exam. Next we head to the Infusion Clinic. That’s where the magic happens. Theo gets comfy in his big chair, we draw the curtain, and hang out for however long until the chemotherapy meds are done getting pumped into his body. That’s a wrap! And so that is what our Tuesdays look like… for the first five weeks anyhow. There are two parts to Delayed Intensification. Part one starts with oral steroids (Dexamethasone) at home and a lumber puncture of Intrathecal Methotrexate, you know, the one that almost came one week early. The following week he gets Pegasparagase (PEG). *PEG is scary. There is a 25% chance of a patient having a strong allergic reaction that can land you in the ER. Wow. That’s one out of every four kids! It has been known to cause other bad reactions as well. Unfortunately it is also a key drug for treating leukemia and other options are not as accessible or easy to give.* Theo gets a cocktail of other chemotherapy meds (minus Dexrazoxane of course – the one Theo is ALLERGIC to!) Vincristine is the one that makes hair fall out. Doxorubicin makes his pee orange-red. Both cause nausea. Ugh… and did I mention? Yep, steroids… again. Theo’s neutrophils will drop slowly (like the title says, “Delayed”), not like in Consolidation when it was sudden and extreme. So we have to be mindful of that. His energy will likely decline slowly over these next few weeks. He definitely needs NAUSEA CONTROL. Think we finally got it? Oh yeah, we got it. And one more thing. Theo needs FOOD. Not just any food. I’m talking STEROID FOOD. Fee-Fi-Fo-Fum, I smell a hungry one!!

Theo is not himself when he’s on steroids. NO ONE is them self while on steroids! Remember Induction phase? That was 28 days straight of steroids. Theo was a monster. At least this time around we get some breaks. It alternates, one week on, one week off. During Consolidation he was also taking steroids, but only for five days during each block. I’ve mentioned before that Theo is a good eater. This is different. This is strange. This is not “normal” eating. There are no meals, no set time for breakfast, lunch, and dinner. It is a non-stop guessing game of what Theo wants to eat next. An all… day… long… eating marathon. It’s the ONLY thing on his mind. Theo is with food, like our dog Manu is with his ball. Locked. Obsessed. One track mind. His cravings have changed over the weeks. First it was just plain white rice and cucumber slices. Then is was rice paper (I know, what?!?). Then he only wanted soup. The most recent one was ramen and baguette slices toasted with butter and spices, aka toasties. One day at his clinic visit, he repeated himself (I’m not kidding) at least 20 times, “After my appointment I’m going to go home and eat ramen, and an enchilada with delicious beans and rice.” Every staff member in clinic that day heard about it. We went to the lake on a sunny morning. “Theo, look at Mt. Rainier!” Theo, completely ignoring the view, responded, “I’m trying to think of what else I’m going to eat with my ramen when we get home.” What’s even more frustrating is that most of the time he doesn’t even know what he wants! Theo starts every morning talking about how hungry he is (super cranky) and how he wants to eat “delicious food”. So I ask him, “What do you want?” I give him almost every option of food possible. He yells back in tears, “I don’t know! Stop asking me what I want to eat! I’m so frustrated!” So what do we do? We wait until he decides. But he is NEVER satisfied. What ends up happening is that we bring him dish after dish, meal after meal. Sometimes we get it right and he eats it all. It feels so good to see him smile and be happy. To see him eat and enjoy that very specific food that he’s been craving and asking for. But sometimes he eats maybe two or three bites then says he is “just not that into it” and would like to eat “other delicious food”. Or obsesses about eating something (say a cheeseburger) non-stop for hours. He finally gets it, takes a bite, then says, “no thanks. What else is there to eat?” Seriously?!? Oh believe me. We’ve tried every approach. When I was growing up the rule was “take all you want, but eat all you take”. Wasting food was NOT an option. We still follow that rule, which means we eat a lot of his leftovers, or at least try to. For Luis, seeing Theo hungry and desperate for food triggers an emotional response he had buried deep within him. He grew up a hungry kid and food was always on his mind. Although he knows it’s illogical to compare the two, it makes him sad and angry. He will therefore go to the end of the world to find the ingredients to satisfy Theo’s cravings. It’s so difficult to not let it bother us and get to us emotionally. We know this is not our Theo. This is Theo on steroids.

But… GUESS WHAT?? He’s eating, for goodness sake, he’s eating!! He’s not getting feeds through the feeding pump! It’s been two glorious weeks of him not having that pump attached to his NG tube. We have boxes of unopened feeding tubes and formula and I plan to keep it that way. He is eating more than enough and gaining weight every week. The best part? Theo is still my sweet boy who likes to snuggle at night. He still misses me when I have been away for an entire hour. He still gives me hugs out of the blue because he can tell I am stressed. He still likes to tell the silliest jokes and the greatest stories. He hasn’t gone completely steroid monster on us. One day when talking about food and helping him decide what to eat, he yelled back at me. He was frustrated as usual. So was I and I was not having it. I scolded him for talking back and yelling at me. Crying he said to me, “I’m sorry Mama. Sometimes when I am frustrated I forget my manners.” Oh Theo, you truly are the sweetest. I am embarrassed. I am an adult who cannot admit that and you are only five. We are proud of you, so proud. Keep learning, keep growing, keep smiling, keep fighting!!

Today there will be no rush, we will move as slow as a snail. We will wake up late then take a walk, picking wild flowers along the trail. We’ll have a picnic at the park, sitting on the soft green grass. Play Simon says, then charades, having fun as we let the time pass. We’ll share stories of wild adventures, some true and some fake. Telling jokes so funny that we’ll roll around and laugh until our bellies ache. We’ll watch the sky turn purple and pink as the sun begins to set. And dream of more days like today, this feeling… I will never forget.

“People who love to eat are always the best people” -Julia Child

The Chase

Consolidation is OVER. Our hospital bag is unpacked and will hopefully stay that way for a long long time. Out of the 63 days of Consolidation, 28 days were spent in the hospital. Turns out, chemotherapy treatment really is tricky! It doesn’t just deceive the leukemia cells from coming back, we were also duped. What is this, some kind of game? Just when we thought we were ahead, prepared for what was coming next – BAM! Chemotherapy scores again! Every time we were discharged, we headed home thinking we had it all figured out. Puke bags ready, pain meds, anti-nausea meds ready, NG tube replacement plan ready. Nope. The intense cocktail of high dose chemotherapy drugs is a raging fire that cannot be contained. We realize that now. It only took us nine weeks but we finally understand that no matter what you THINK may or may not happen, it doesn’t matter. You do your BEST and when that is no longer good enough, you pack your bags and check into Hotel Children’s.

Let’s see, where did we leave off? Oh yes, Consolidation Block #2, The Storm. Well, you can put your tissue boxes away now. But I will warn you to hold from eating while reading this. It may ruin your appetite. I am happy to report that Block #3 while admitted was generally pretty easy. Or maybe it’s just that Block #2 was SO BAD that it made anything after it feel like a breeze. Perspective, right? At least by Block #3 Theo had finally gotten used to the NG tube, making medicine delivery much easier. There were no life threatening allergic reactions and no high dose Methotrexate. The best part? There was no screaming or crying to go home. No, it wasn’t fun, but at least Theo was in good spirits. Uncomfortable yes, but still my sweet boy. It really wasn’t until the last night, day five, that anything out of the ordinary happened. It was our last scheduled day in the hospital. Theo had been feeling good enough to get out of bed and play for at least an hour. We did mutagen experiments with the ninja turtles, completed two puzzles, and made Bobo a birthday card. He was also eating like a champ. Pizza, eggs, pork taco, smoked salmon, rice, apple slices, and ice cream. He drank an outstanding 14 ounces of water, the most he had been able to drink on his own in weeks. Before medicine time he even made a point to tell me how good he felt, how proud he was of himself for eating and drinking so well. His belly was happy. What a great day, what could possibly go wrong? (eye roll) At 9pm the nurse came in to give Theo his last round of scheduled meds, Imatinib included. I have never seen Theo jump out of the bed so fast with his weak legs while attached to the IV pole. The moment Imatinib entered Theo’s stomach he felt the urge to poop and to throw up. Sadly it all happened so fast he never made it to the bathroom. Darn you Imatinib! First big mess, and so it began… helloooo nausea. Recall what I said earlier about being prepared? Right. Well, we thought we were, but this was like no other nausea we had ever seen. Even worse, we were BEHIND it. The key to handling nausea is to be AHEAD of it. The following two weeks was a frustrating game of cat and mouse. Chasing after some problem or ailment and then, just when we thought we had it figured out, we’d start chasing something else that was going wrong. Our heads were constantly spinning, like dogs chasing our own tails. How about you? Is your head spinning yet? I hope not because I’m just getting started!

At discharge on day six, we were giving Theo more anti-nausea meds than usual: Olanzapine at night and Zofran scheduled every eight hours. It seemed to be good enough, up until the dreaded hour of giving Imatinib. He couldn’t keep it down. No matter what we did, no matter what time or how it was delivered. Theo would wake up out of a dead sleep as soon as we started pushing the Imatinib through his NG tube and throw up immediately. We ended up having to give the Imatinib three times on some nights. If a medicine is thrown up within 30 minutes of delivery, it needs to be given again. Those 30 minutes following feeling like eternity. This was a HUGE problem. We could not continue like this, we needed help. We even started to wonder if Theo had developed an allergy to Imatinib… the ONLY drug that can kill the Philadelphia chromosome positive cells.

On day seven of Block #3, Theo was scheduled to receive a shot of Nuelasta (chart says Filgastrim). A drug that helps stimulate the bone marrow to start making new cells. That morning Theo could barely speak, he couldn’t stop gagging. Nothing stayed down. After talking to his doctors we were instructed to give him anti-nausea meds every 2-3 hours. WOW, that’s a lot! But it worked. Zofran every eight hours, Benadryl-Reglan and Ativan alternating every six hours. We did this for three days. The only three days Theo held his Imatinib in. Finally! Something that worked. But how long can we go on like this? By the fourth day we decided he was doing better and pulled back on some of the anti-nausea meds, crossing our fingers we weren’t making a big mistake. Phew. We finally made it over the hump of bad nausea. With a transfusion of blood and platelets also completed in that time we were certain he’d be feeling good. We took a deep breath and started to relax a little, ready to enjoy a couple of weeks before the start of the next phase.

What… did you really think that was it?? Ha, that would be too easy. Two days later we were back to anti-nausea meds every 2-3 hours. Theo was back to vomiting and pooping his pants with the Imatinib. Then, the following Monday night the NG tube came out. I tried three times to get it back in but no luck. Not even Theo cheering me on “C’mon Mama, we got this” could make it work. (I am in awe of how well he handles the NG tube placement. Taking deep breaths. So incredibly brave). I think his nose was finally so irritated from the 100 times I had re-inserted the tube. Oh well. With diarrhea, no tube, no Imatinib in, and stomach pain, we had no other option. Off to the the emergency department (ED) we went. Once the Hematology/Oncology clinic is closed, the only way to be admitted is through the ED. I have more on that later, but first… the chase. So one more night admitted and Theo was ready to come home the next day. Or was he? He had kept down all of his meds, even the Imatinib, before we were discharged. We had a solid plan for controlling the nausea. Theo was feeling better with a new NG tube and ready to go home! So WHY did Theo throw up out of the blue at 1am our first night back home and then wake up with a fever? Guess what? That’s right… back to the hospital!!! I bet your head is spinning now!

Here we go again. The chase continues. But what are we chasing now? Nausea? We weren’t so sure anymore. A fever is a sign of an infection. Okay, so it’s more than just nausea. If temperature reaches 100.4 Fahrenheit or 38.0 Celsius, it’s immediate admission. An infection can get very serious very fast. That’s why patients are required to live within one hour of the hospital in case of emergencies. His temperature at home was 101.4 F. When we got to the Hematology/Oncology clinic the nursing assistant got a temperature reading of 98.6 F. Huh? No way, that can’t be right. Hear me out. I am not an expert but I have good reason to not trust temporal thermometers. I know that they are more convenient, especially when a patient is asleep or has been eating food. I was told that a study was done a couple of years ago to see which thermometer method was the best. Temporal thermometers were selected as the superior choice but there has always been some controversy over that decision. Many doctors and nurses that I talked to about this also doubted that decision. Again, I am no expert. But I was starting to notice that the temperature readings I was getting at home (taken orally) were different from the readings at the hospital (taken along the temple). I asked the assistant to retake the temperature under the tongue. 101.4 F. Ahhhh-HA! There it is. So, from then on, I asked for Theo’s temperature to be taken orally, under the tongue.

Theo spent the next three nights in the hospital getting broad spectrum antibiotics, Tylenol, and fluids. Theo was having sudden uncontrollable leaky diarrhea every hour and still throwing up randomly at night. The first night he vomited blood. I was horrified and terrified at the same time. The room looked like a scene from The Exorcist. When Theo was done getting sick he looked around the room, looked at me, then at himself (both covered in the mess) and asked with calm curiosity, “Oh no Mama, how are we going to clean this up?” I would’ve laughed but at that point but I was too busy swearing. What the heck was going on?? The fever was gone. A swab and poop sample were tested for every possible virus that the hospital can test for. They all came back negative. Luis and I were scratching our heads. Drum roll… it was a bug. A BUG?!? Yep, just a bug. Apparently the blood in the vomit was not a “big” deal. Theo’s platelets were low so another platelet transfusion would solve that problem. But what about everything else? Simple answer: neutropenic. *Quick review* A person who is neutropenic has a low level of neutrophils. Neutrophils are a type of white blood cell that fight infection. Neutrophils, red blood cells, other white blood cells, and platelets are made in the bone marrow. Chemotherapy destroys the ability for the bone marrow to make these cells – it wipes away everything bad and good! Intense high dose chemotherpay can wreck so much havoc that neutrophils can be nonexistent for weeks. This is the time infection is most likely to happen. Once the bone marrow recovers, it starts making neutrophils (ANC goes up) and other cells again, then the body can fight bad organisms and rebuild tissues. It takes TIME. Basically, Theo had no inner lining cells to his digestive tract. He was raw inside with no good cells or bacteria to help him out. Just like when he had mucositis, the lining tissues had not been regenerated making it extremely difficult for his body to take in or digest anything. The super thick coating of Imatinib makes it especially hard on the stomach. No wonder it always made him sick. Wow, now it all makes sense.

What a roller coaster ride! We were so relieved to have Theo home and healing with us. For real this time. I promise. Yes, it was challenging and frustrating no doubt. We definitely had a our moments of hair pulling, wall punching anger. But Theo?? I’ve got to hand it to him. He is such a cool cucumber. A true chill master, my sweet little dude. I don’t think I give him enough credit sometimes for how much HE is learning through all of this. How much this whole experience has forced him to deal with pain and discomfort. He is mature beyond his years, a wise old soul. Constantly reminding me to check myself. I can’t tell you how many times he tells me when I am stressed, “it’s okay Mama, just take a deep breath”. We are all learning and growing from this.

I’d like to talk about an important lesson we learned from this last phase: Ask questions!!! Each time Theo gets admitted to the hospital, we meet another group of doctors, residents, fellows, nurses, etc. Each time we meet someone new we have to repeat the story, the symptoms, the current medicine list (see above)… OVER and OVER. *One night I had to recite Theo’s medicine list three times to three different doctors*. If you have to be admitted through the ED, even worse. The ED is not specialized in treating cancer patients. They are not as familiar with all the meds Theo is taking, his unique treatment, or his specialized needs, like the fact he does NOT like band-aids, but prefers gauze with Kind tape. So when Theo is due for his Zofran or Imatinib and I ask the nurse when he will get it, I get a blank stare in return. One evening during Block #3 while waiting in the ED, I was told Theo couldn’t eat past 12am (NPO) because he had a “possible procedure” the next day. Huh?? I was persistent in telling the nurse and doctors that he had NO procedure scheduled until July 7th – one week out. The procedure being a lumbar puncture of chemotherapy into his spinal fluid, aka, the start of his next phase of treatment. Why was this suddenly on the schedule? The resident on staff in the ED noticed the note in Theo’s chart that the procedure was set for one week out so he/she decided that perhaps it should just be done one week earlier, since we were already there… for our convenience. REALLY?!?! You think giving my son, who is checking into the hospital for nausea and diarrhea, who’s ANC is little to nothing, should have MORE chemotherapy one week early?? That is the opposite of convenient. That is thoughtless. He is in the hospital to HEAL!! Ugh.. that had me fuming out of the ears. There were other times as well, when Luis or I had to intervene. What can I say. You need to be on top of it. You need to know what’s going on. You need to KNOW the meds. You need to ASK QUESTIONS!!! At Children’s Hospital we are surrounded by so many brilliant minds, countless doctors and nurses who care deeply and want to help. Everyone is doing their best and we are so grateful. It’s just that we are so used to the the unique specialized care and attention we get from the Hematology/Oncology clinic. They are OUR PEOPLE. Theo’s doctors know him SO well. They know his journey inside and out, his strengths, his weaknesses, his struggles. They have a pharmacist who specializes in the medicines used to treat cancer. They even know the names of all his stuffies, for goodness sake! We are so spoiled by them all. Bottom line: everyone at Children’s Hospital is there to help, to care for Theo, and they all want what’s best for him. Just remember… ASK QUESTIONS!!!

I had a nightmare. I was drowning. Swallowed into a blur of blue and black. My body felt heavy, like something was pulling me down, further, deeper, darker. The water was thick like oil. I could not see light. I could not see anything. I don’t know how I got there or when it all started. But I never stopped fighting, never stopped trying to escape the weight of the water holding me under. Suddenly there was air. I took the deepest most luxurious breath in. I filled my lungs up with happiness and my body was still. Is that the end? Am I safe? For now, yes. Today I have both feet firmly planted on the ground. Today I breathe with awareness and intention. Today I embrace the pure essence and joy of Theo. How is Theo? Today he is laughing, playing, and even eating. Tomorrow… we will see. Every day he is my super hero.

blue sonic popsicle mouth

“No matter what you step in, keep walking along and singing your song… because it’s all good.” – Pete the Cat, I Love My White Shoes, by Eric Litwin

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