Red Skies At Night, Sailor’s Delight

“Autumn leaves don’t fall; they fly. They take their time to wander on this, their only chance to soar.” (Owens, 2018, p.124)

This past year has been the most difficult and challenging year for me as mother, a wife, and a human being. Never in my life has it been so hard to stay positive. As a mother, it is my job to set a good example. To not only teach but show my child what kindness and respect mean. To help my child understand and process his emotions. The last thing I want is for Theo to see me having a raging fit. Or for him to witness an ugly argument between Luis and me. But… it happens, right? Of course it’s not ok. It breaks my heart. Theo looks up to Luis and me, looks to us for how to feel and act in times of stress. And oh boy, this has been a year of STRESS. Theo must have a wise old soul like Luis, because he always seems to know the right thing to say at the right time. He pats me on the shoulder and tells me “It’s ok Mama, just take a deep breath.” As for Luis? Like I said: old soul. He is constantly reminding me to not hold in my frustrations, to communicate daily, effectively and kindly. Yes, I am the “huera loca” (crazy blond) and I am deeply loved. Well, it wasn’t easy, but we made it through the first year. The hardest part of treatment and the most intense therapy Theo will have to endure is over. After this very grim and frightful year I am hopeful and looking towards a bright future. It is time to leave the darkness behind me and breath. After all… Theo is not falling. He never was. Theo, like the autumn leaves, is flying.

Batter UP!

One word: MAITENANCE. It is just around the corner! Theo is sooooo close we can smell it. Like a pie baking in the oven, waiting for the last few minutes to turn the crust golden brown. We are presently waiting for Theo to start Maintenance. We were expecting that he would start today, January 19th, but unfortunately, his platelets are still too low. He has already received one blood transfusion and two platelet transfusions since the end of Delayed Intensification #2. His legs are covered with bruises that refuse to heal and if he gets a cut it takes a long time for the bleeding to stop. I thought for sure a third transfusion of platelets was in his near future. His platelets are really struggling this time, but slowly and surely they will rise. This marks his third week of delayed therapy. He was scheduled to start on January 5th but his numbers were not high enough. Fortunately his ANC is well above 700 so at least his immune system is getting stronger. Being delayed one more week is not upsetting. It just means another week to rest and recover. On the down side, he got denied from going to the sleepy room after not eating all day. But it also means he gets one week off from taking Imatinib!! That is a big win for Theo. Either way, he will be there soon enough, likely next week. It felt like ages ago the doctors in the ICU spoke of this mysterious yet magical phase. Like it was some far off land that belonged in a fairytale. It’s not the finish line, but at least there are fewer hills from what we can see. Maintenance is the longest of all of the phases. It is typically when patients start to feel better, have less intense chemotherapy, and have a strong enough immune system to even return to school. Basically, life returns to almost normal. If it weren’t for Covid, Theo would be going back to school and to all his favorite places, like the aquarium.

Therapy Delivery May – Maintenance Cycle One

Remember Interim Maintenance? It was the easy phase before Delayed Intensification #2. Well, guess what? Maintenance is almost exactly the same! He takes all of his chemotherapy at home, orally. He will continue to take Imatinib daily, as well as Mercaptopurine. Oral Methotrexate is taken once a week. Every six weeks he will get a back poke of Intathecal Methotrexate for a total of six doses, which Theo is obviously excited about. Maintenance is divided into four cycles, each course lasting three months. The only change happens in the fourth cycle, when Theo does not get any back pokes. Otherwise there are no changes in his medications. Last but not least is Bactrim – not listed on the therapy delivery map. Taken since day one, it is an antibiotic taken every Monday and Tuesday for the duration of his treatment and three months following the end of therapy to prevent pneumocystis pneumonia. Now to answer the burning question: how long does Maintenance last?????

When Theo was first diagnosed with leukemia, we were told that Maintenance phase usually lasts two to three years, sometimes longer for boys. We were shocked. Then Theo had to start taking Imatinib and we thought, “You mean he has to take this every day for the next three years, maybe longer?!” Well, I have good – no, AMAZING news. Maintenance phase for Theo will only last ONE YEAR. That’s right. How awesome is that? Also, because he will not need any IV chemotherapy, he can have his port removed!! I know, it just keeps getting better. During a provider visit on the Tuesday before Christmas, Theo’s doctor delivered all of this wonderful news to me. I was so happy I wanted to pick her up and give her the biggest bear hug. Hearing that was the best Christmas gift I could have possibly been given. ONE MORE YEAR. I couldn’t believe it. Why so much shorter than expected? In a nutshell, Theo got the shorter but more intense straw. Theo has had longer and more intense therapy than patients with the more common types of leukemia, therefore his Maintenance is shorter. Patients with the more common types of leukemia, in general have less intense therapy so Maintenance for them does last as long as two to three years.

my locos

That wasn’t the only reason to celebrate. Best thing of all, Theo was home for Christmas. We did not have to celebrate the holidays in the Cancer Care Unit! In the last week of Delayed Intensification #2 Part 2, Luis and I were definitely on edge. Anxious that at any moment a fever would spike, we checked Theo’s temperature more often than usual, feeling our hearts race ever time we heard the thermometer beep with a reading. There were a couple of days that last week when his temperature jumped into the “recheck” zone, but luckily never went higher. He did get some headaches but nothing Tylenol couldn’t handle. What a relief, he did not need any oxycodone. Sudden movements and sitting up out of bed brought on the headaches so he was not very active at all. The most activity he had was going to the hospital for appointments, some of which he slept through entirely! Leaving the bed to do anything other than go to the bathroom was rare. He even chose to stay in bed “just a little longer” on Christmas morning even though we tried to excite him with the news of Santa’s recent visit and presents under the tree. He finally found some energy to go open his presents and flash us his beautiful smile. Theo showing us the true meaning of holiday cheer.

The last day of Delayed Intensification #2 Part 2 was on Saturday, December 26th, 2020. By then Theo was no longer eating enough on his own so I dusted off the old feeding pump and hooked him up again. We were truly amazed at how well Theo had been eating. We were expecting his appetite to disappear long before it did, but he continued to prove us wrong. No new food cravings this time. Theo had been eating healthy size portions with a preference for bland. Favorites were, and continue to be salty popcorn and plain white rice. His holiday meal of choice was a giant bowl of mashed potatoes with salt and butter. At first we used the feeding pump as a way to supplement his nutrition. The rule is, if he eats more than 50% of a meal we skip the pump. If he eats less that 50% of a meal then he gets one 250ml carton of pediatric formula through the pump. Eventually, Theo stopped eating completely, but only for about one week. I was mentally prepared for Theo to be needing the feeding pump for weeks, even months, and therefore thankful that we were stacked with plenty of supplies. Surprise!! It wasn’t even two weeks later that Theo was back to eating again! By January 9th, Theo was off the feeding pump completely. Still eating popcorn almost daily… but done with the pump.

Cool guy eating pie in Port Gamble

Presently, Theo is feeling GREAT. He is what you would expect a five year old boy to be. Full of energy, crazy, chatty, silly, and sweet as pie. It has taken three weeks, one blood transfusion and two platelet transfusions to recover from his last round of chemotherapy. Luis and I forgot (again) what it’s like to have a wild five year old. After months of Theo having low energy and barely getting out of bed, we had adjusted to a new level of “feeling good”. Our expectations had changed. Now, seeing him run, play, and dance, it’s like watching an alien. Who is this kid? Oh wow, it’s been Theo all along, he just hasn’t been feeling good or feeling like himself! What a difference. Theo has bounced back again. Sometimes we worry about the amount of time he has spent this past year watching cartoons and playing video games. Fortunately, Theo is so bored of cartoons! His desire to go outside and play is burning. I can’t blame him. After being cooped up inside for so many months it must feel so good to just be outside and play, dig, explore, and get dirty! He is back to scooting, biking, and his new favorite: baseball. This kid can hit. The louder the “boom” the bigger his smile. He bats left handed and throws the ball right back to the target. Some days we will spend hours outside hitting and throwing the ball. There are so many sports, activities, and musical instruments he has yet to try. I can’t wait to see what inspires him, what will bring light to his world. His NG tube is even out as of one week ago (January 13th)!!!!! He was so happy when it came out and I said it didn’t have to go back in… ever. He proudly announced that he is ready to go back to taking his pills because he is a “big boy”. His first night taking Imatinib pills he asked, “Why are the pills so small? Is it because I grew so much?” I can only imagine, Theo, like in Alice in Wonderland, growing to the size of a house after eating a mysterious mushroom, looking down at his teeny tiny pills. Well, he did it. The pills went down easy peasy, with Luis by his side. I don’t know how Luis does it. With me, it will take Theo 30 minutes to get his medicine down. So many delays, excuses, and interruptions. With Luis it’s done in one minute. Luis is so good at that. Cut the nonsense, let’s get this over with. Theo is so proud of himself, as he should be. He has been knocked down and beat up so many times. No more. Our Theo is here to stay.

During our many long hospital visits and lazy days at home in bed, I found time to read yet another wonderful book (and some other not so great ones). My new favorite, Where The Crawdags Sing, by Delia Owens, had me lost in time and space. When I read the above opening quote, it was like a window opened and sunlight came through. I saw beautiful radiant colors and immediately felt happy. That is how I feel every time I see Theo smile.

Peace! Waiting to see his doctor

“It’s hard to beat a person who never gives up.” – Babe Ruth

The High Life

Another page has been turned, another lesson has been learned. The leaves that fell are swept away, to clear the path for another day. Thoughts drifting though the mind, once lost they are hard to find. Pour the coffee black and strong, the year is short but the days are long. A few more wrinkles here and there, a few more grays in my hair. Just keep driving can’t slow down, nothing can stop the world from spinning around… and around… and around.

At this time last year, Theo, Luis, and I were on our way to the Yucatan of Mexico. We had been counting down the days to sunshine, playing on the beach, and holiday fun with family. Looking forward to a break from the early morning rush out the door and days relaxing in the hot Yucatan sun. Conversations about our favorite delicious Mexican food spilled from our mouths like uncontrollable drool. The anticipation of the upcoming trip was buzzing through our bodies, dancing around every thought. We were overwhelmed with excitement, unaware of the gut wrenching blow that was awaiting our return. Wow, where does the time go? It feels as if we’ve been sucked into some black hole on a rollercoaster ride from hell and then spit out one year later. What the heck just happened? Where are we and how did we get here?

My super hero waiting for his back poke

ONE YEAR LATER. Well, technically Theo was diagnosed on the night of January 9th, 2020. So it’s been almost one year later. We are in Delayed Intensification #2 Part 2. The LAST phase of intense chemotherapy before Maintenance!! But no celebrating yet. We still have a steep hill to climb. Part 2 is no walk in the park. Let’s review. Week one starts with a back poke (awesome), followed by a long day with Cyclophosphamide, followed by four days of Cytarabine. Week two starts with another back poke and four more days of Cytarabine. Plus there is the addition of Thioguanine daily for 14 days. Now let’s think about something. The blog entry I wrote the last time Theo went through Part 2 of Delayed Intensification was titled, Dazed and Confused. This blog entry is titled, The High Life. Hmm… Does it have anything to do with Theo being looped up on anti-nausea meds and pain killers? Yes, it most definitely does. Zofran, Benadryl, and Ativan alternating every three hours. Like I said before. It’s better for Theo to be high and loopy (meaning extra emotional and insanely silly) than to be throwing up and in pain. So that’s our plan and so far so good! Presently, he has just finished week one of Part 2. Aside from some random pain in his legs, he has not had any headaches or other severe pain… yet. Hopefully he never will, but we will see. Cytarabine is known for causing flu like symptoms. The key is to make it through Part 2 without any fevers or visits to the Emergency Department. After all, Christmas is only three days away and it would be nice to celebrate in the comfort of our own home. Theo has already mentioned that the hospital rooms in the Cancer Care Unit do not have chimneys for Santa to come down. And so how would Santa deliver presents to all the kids staying in the hospital?? The answer of course is MAGIC. Besides, we have already spent enough time in the hospital for one phase. Let’s not add more days, don’t you agree?

Do you recall how Part 1 ended? That’s right, a trip to the Emergency Department at midnight on Thanksgiving. Quite the unfortunate ending to a lovely holiday. We all headed to bed that night with happy hearts and full bellies, thankful for being able to celebrate the holiday as a family together at home. If only it had stayed that way. Theo spiked a fever of 100.8 just before bed. The rule is that we wait one hour and if it’s still that high, then we call the clinic or on-call doctor. One hour later when we checked on him, his skin was on fire. It was obvious his temperature had gone up. Sure enough, it was 101.5 Fahrenheit. We called the on-call doctor (knowing what was going to happen), packed our bags, and waited for the order.

The process of going to the ED is all too familiar now. We know how many doctors will stop by the room, what questions will be asked and how to answer them, and how long it will take to transfer to the Cancer Care Unit (a long time). I even surprised the nurse with telling her Theo’s port type and needle size before she had the chance to ask while setting up for his port access. Knowing what to expect definitely helps, but it doesn’t take away the stress of knowing how uncomfortable it will be for Theo. Constantly being poked and examined from head to toe while trying to sleep and yes, getting accessed always hurts when it’s done in the ED. And then, just when you think they’re done and Theo can finally get some sleep (because you know, it is 3am) here comes the Covid swab! Dios Mio!! It was 5am when Theo and I were finally settled in our room in the Cancer Care Unit and went to bed. Luis, who was anxiously receiving my updates and waiting for my last text that everything was ok, also finally went to bed. Theo was ok. There was no sign of infection other than a mouth sore behind his upper left molar. The doctor told us that his red blood cell count was far below threshold, which was likely the cause of the fever. How funny, Theo had an appointment scheduled in clinic the next day for a blood transfusion… but his body just couldn’t wait for it any longer. A neutropenic fever is always treated with broad spectrum antibiotics and continued until count recovery. If there is an infection present, another antibiotic is also sometimes given. The mouth sore, aka mucositis, gave enough reason to add a second antibiotic. Therefore, Theo was treated with two antibiotics: Clindamycin and Ceftazidime immediately and throughout his stay at the hospital. Let the fun begin!!

An art lesson with Theo. He taught me how to draw Patrick the starfish.

I’m usually a very light sleeper in the hospital, with all the beeping monitors, nurses coming in and out of the room with squeaky shoes, and blood pressure cuff going off every four hours. But that first morning I slept hard. I eventually woke up to a bright eyed and very energetic Theo. Well hello there! Looks like the vampire drank some blood! Yep, Theo had a blood transfusion right after we fell asleep. And boy, what a difference it made. He was like a brand new person. Laughing and playing, like a light had been turned on inside of him. What a relief. We figured it would be a couple of days, maybe two or three, until we could go home. Sure, his neutrophil count was very low at 50, but otherwise he was feeling good. Luis and I agreed to ask the doctors to be discharged even if Theo’s neutrophils were low. There were no infections, his mouth sore was going away, and he had good energy. It was like deja vu. This was exactly what happened the last time Theo was admitted with a fever at the end of Delayed Intensification #1 Part 1. There was no way we were going to let this turn into another ten day stay!! (famous last words)

Well, our little trip to the ED turned into a 14 days stay at Hotel Children’s. Wow, we did NOT see that coming. Of course we knew there was a strong possibility of Theo getting admitted, but 14 days?!? I reached out to Theo’s doctors in clinic. They know him so well and would probably agree that he would be just fine at home. Wrong. We were shut down. It was a unanimous decision that Theo stay in the hospital until his neutrophils recover to 200, or at least start moving in an significant upward trend. OK fine. We accepted the fact that we were going to be there for a while and to just make the best of it. How bad could it be, really? Surprisingly for Theo, not that bad. Honestly, it was much harder for Luis and me. Only one parent/caregiver is allowed in the hospital at a time. So Luis and I are separated the the entire two weeks, even on Luis’s birthday, no exceptions! We saw each other only when we would exchange keys and the caregiver badge in the parking lot outside. Luis always did his best to relieve me for a couple of hours during his lunch break or after his work day had come to an end. He was also frequently called upon to bring Theo yummy non-hospital food at any and all hours of the day. If you have reservations at Hotel Children’s, here’s my recommendation: bring your own pillows and a soft mattress topper, an eye mask for sleeping, LOTS of activities and creativity to stay busy during the day, a good book, and a positive attitude. Know that you will be living in a fish bowl with no privacy. Be prepared to have anyone walk into the room at anytime, that includes throughout the night. Be prepared to go to Starbucks for your coffee everyday (because that’s the only option). Be prepared to NOT sleep. You are essentially trapped in your room until the doctors say you can leave. Kidnapped. Even the team of doctors joked about it with us during daily rounds. “We are SO SORRY you are trapped here.” Each day we woke up to see the neutrophils slowly drop or just not move at all. They went from 50 to 38, 33, 21, 30, 26 to 47, back down to 42. It was like being teased! Theo’s monocytes were on the rise, which is usually a good sign that the neutrophils will go up soon. Daily doctor rounds were a repeat of “hang in there” and “any day now”. Is Bill Murray here? Is this Groundhog day? Waking up every day to the same thing, same routine, same room. Finally on day 14 the neutrophils made one big glorious jump to 118.

Theo, on the other hand, was having a great time. Huh? I know, I was shocked one morning when Theo said to me, “It’s ok if we have to stay here another night, I am having so much fun!” Say whaaaat??? You mean you don’t mind being hooked up to the pole? You don’t mind not leaving this room? You don’t mind being stuck here for days upon days? Amazing but true. Theo was happy as a clam. When you are in the Cancer Care Unit you get a lot of attention. So while I was feeling like putting a lock on the revolving door of our room, Theo was joyfully welcoming each visitor with a great big smile. Eager to show everyone his stuffies, his drawings, and of course, his Spider-Man game. He was thoroughly enjoying the attention he was getting from everyone at the hospital. I completely understand. For a child, what’s not to love about tons of adults feeding you compliments, oohing and aahing over everything you do and laughing at all your jokes? To Theo, everyone is a doctor, someone very important. How refreshing and exciting it is for Theo to be surrounded by and paid attention to by so many people he admires. Finally, someone other than Mama and Papa to talk with and play with! Every night he invited his night nurse to join us in a game of Bingo or Candyland and they often accepted. The next morning Theo would talk about it as if a celebrity had been sitting next to him playing with us the night before. Each day was filled with lots of laughter and fun. Ironically, there was much less time watching cartoons in the hospital than at home. Theo stayed busy drawing on the windows with white board markers, coloring, tons of science and art projects, games upon games, and visits from Child Life, music therapy, and physical therapy. And have I mentioned the food? Oh yes, fortunately, Theo likes the food from the Children’s Hospital kitchen. His meal of choice: chorizo tacos. He was obsessed. So much so that he ate six chorizo tacos every morning for breakfast! That’s right. Chorizo tacos for 14 days in a row! Doesn’t sound too bad after all, does it? Lucky for us, Theo IS fun. He doesn’t just make us laugh, he cracks us up! It is always a joy to be with my sweet silly boy. If Theo is happy, then we are happy. There is no other option than to make the best of every day and enjoy it. It doesn’t matter if we don’t like staying in the hospital. It’s ALL about Theo. He needs us to be there for him. To be positive, to be inspiring, to be brave. If we can’t let go of our own negativity and show Theo the hidden beauty in every situation, than we have failed.

One of the most important lessons we have learned during this journey is to… remember? ASK QUESTIONS. Well, we have done a great job of doing that, maybe even asking too many questions if that’s possible. But there is another lesson to be learned throughout all of this, which is to not get too comfortable. Do not let your guard down. Be on your toes, be alert at all times! I am so used to keeping a log for all of Theo’s meds at home. But when we are staying at the hospital, the nurses are in charge of all of Theo’s meds. They follow the plan and just do what is on the schedule without my help or even knowledge sometimes. Sometimes they tell me what they are doing, to give me a heads up. Also, I like to chat with the nurses to get to know them (and because they are fun to talk to to). It’s important for them to know what Theo likes, what Luis and I prefer, and any other details about Theo and our routines at home that can make the hospital stay more comfortable. Theo was feeling so great this last stay that we didn’t have too many concerns when it came to medicine delivery. It became so easy for me to put on my pajamas, sink into the recliner and enjoy another episode of Schitt’s Creek or another chapter in my book while the nurses did all the medicine work. Well, it came back to bite me in the butt one night. Every night Theo gets a dose of Zofran (anti-nausea med) 45min to one hour prior to Imatinib. He needs it or else he will throw up. One night the nurse came in about 25 minutes after giving the Zofran, ready to give Imatinib. For some patients, 25 to 30 minutes is enough time. Not for Theo. And I wish I could go back to that moment and stop her, tell her to wait 15 more minutes. But I didn’t. Not one minute after the Imatinib was given, Theo was bent over moaning in discomfort. No no no no NO! Yes. He threw up everything, including his NG tube. Ugh, we were having such a great day!!! Then, to my surprise, Theo elected ME to put the tube back in. Really?!? Not the very experienced, sweet, professional nurse? Ok fine. I am flattered, but when this happens it makes me pit out and my blood pressure go up. It’s so dramatic and stressful for Theo, even though he does a great job breathing through it and it works every time. So many tears, so much pep talk, so much emotion (on both ends – I’m just trying to hide mine). Sure enough we had success and afterwards we were both wiped out. Lesson learned.

Covid has put Luis, Theo, and me on an island. Even though we have family and friends offering help and support constantly, we cannot accept it, and so we still feel like we are alone at times like these. I desperately miss my husband. I have been missing him for an entire year. And being separated from the ONE person in this world who knows what I am going through and can make me feel better only makes it harder. It is a struggle, a part of the journey we never anticipated. But I could not imagine going through this with anyone else. One day we will get off the island. For now I will think of brighter days ahead and keep singing the song that one morning got stuck in my head and refuses to leave because it fits my life so perfectly right now. “I’ll be back in the high life again. All the doors I closed one time, will open up again”

happy in the hospital

“When you’re born to run, it’s so hard to just slow down.” -Steve Winwood, Back in the High Life Again

Too Much Cookiness

We’ve all been there. Uncomfortably full with the top button of our pants undone while slipping into a food coma. Your eyes were bigger then your stomach. You knew it was probably not a good idea to keep eating but you did it anyways. Telling yourself to stop but you couldn’t because it was just too good! Often regretting it later. I know, I’ve been there way too many times. Overly eager to sample the fancy French cheese my mom picked up for Sunday dinner, serving myself that extra slice of cake (because who knows when I’ll get to eat this cake again), grazing the table for last nibbles at a potluck telling myself this was the last bite. Since I was a kid, I always had a reputation of being able to eat an enormous amount of food, although my skinny bony body showed otherwise (genes). I guess that’s how the Murray family decided to call me “Hollow-leg Bendock”. Yes, I have an appetite. But today I am FULL. In more ways than one. At the end of 2019, I was hungry. I was ready for a smorgasbord of adventures and new ideas. What I got was the leftovers that were thrown into the dumpster. I am full of it all. Full of election news. Full of the pandemic. Full of CANCER. Now, Delayed Intensification #2 feels like a third helping at a holiday dinner when my belly is about to burst. Ugh, please no more!!

Delayed Intensification #2 Part 1 is almost over. Theo had his last blast of chemotherapy along with a transfusion of platelets this past Tuesday. If (and that’s a huge IF) his neutrophils are above 500 and his platelets are above 50,000 he will begin Part 2 on December 1st. Highly unlikely though. Before his last infusion his neutrophils were 62. And after getting more chemo they will go down even more. His platelets were 26,000. The transfusion gave them a boost for now but they will also likely tank again. What does this all mean? A delay of maybe one week, maybe two… or even three. It all depends on when his bone marrow recovers, which will raise the blood counts to reach those magic numbers. As much as we want for this phase to be over, we also know that Theo could use a much needed break. A break from being kicked down and turned to mush. A break from being looped up on anti-nausea meds. A break from mysterious unpredictable pain and tummy troubles.

Theo playing his new Spider-Man game

Theo had a pretty good start to Part 1. Most days he had enough energy to play outside, go for a walk, do his school lessons, even crack a few jokes here and there. What do you call a dinosaur that snores? A dino-snore!!! Haha, that one is our new favorite. There was an obvious and sudden drop in energy the day Part 1 started. He wasn’t quite 100%, he had his moments of lethargy. But hey, it’s not like we had places to go or people to see. So the majority of our days have been spent in the bedroom, where Theo is most comfortable. We discovered a new favorite low energy, indoor activity this past month. There is a YouTube channel called Art For Kids Hub. It’s a fun way for kids to learn how to draw cute, silly, and popular characters. Some days he would draw three to four characters. We also made a ton of water color art (covered in glitter of course). Painting and drawing with Theo is healing and relaxing. Good for our souls. A wonderful and very talented artist I know made a Spider-Man painting for Theo. It is SO cool. Theo has been so inspired and motivated to make cool beautiful art just like it. I have no doubt he will. His other obsession? The new Spider-Man video game with Miles Morales. Luis and Theo could easily spend the entire day playing together. I’m not exaggerating when I tell you that when they are playing, you can hear their screams and laughs from a mile away. There is so much excitement the entire house shakes. It is awesome. It is their time, their thing together. Theo tries to teach me how to play (seriously, he saves the last bad guy for me then tells me which buttons to press) but it’s not as fun as it is with Papa. When Theo was feeling good, it was important to act fast, take advantage of it before it went away. We knew it wouldn’t last. Just as expected, these past two weeks have be a fast decline. Watching our boy slowly disappear again. Watching the lights grow dim, his legs grow weak, and his energy fade away.

Painting with Bobo

Have you ever pooped your pants? I mean a real #2, not just a streak, out in public as a grown child or adult who does not need diapers? I personally have not but can only imagine how embarrassing and horrible it must feel. Theo has pooped his pants A LOT during his treatment but always while in the comfort of home or in the hospital, never out in public. Well… it happened. It was late in the morning and Theo was feeling good. We had just finished playing soccer outside but I could tell he wasn’t ready to go inside, so we went for a walk… a long walk. He wanted to keep going and I was too excited to stop him. I was so happy that he had the energy to go on a real walk with me, enjoying a non rainy day, fresh air, and silly conversation. So we ventured on. I suddenly noticed his steps getting shorter and slower. Uh oh… and just like that, it hit him. All of a sudden Theo needed to poop, “right now!” he yelled at me. Well crap. There was literally no where to go, not even a bush to hide behind. Before I knew it I saw the carrot shape push out the back of his pants. It was too late to do anything but walk home nice and slow. I must say. Theo handled it like a champ. He didn’t cry or scream. He felt awful though. He kept saying, “I’m sorry, I’m, so embarrassed.” Again, I can only imagine.

After that we decided to stop going on walks. Theo’s bowl movements became so sudden and urgent that it was too dangerous to be more than 100 feet away from a toilet. We can’t even leave him alone downstairs by himself for more than five minutes. There are times when he says he feels fine and looks completely comfortable. Next thing we know there is a look of panic because he needs to go to the bathroom, immediately. Sometimes he barely makes it. In fact, Theo’s bowl movements have been the HOT topic of discussion in our household these past several weeks. I apologize if you are eating, I don’t mean to go into so much detail with you, it’s just the way it is for us these days. So much so that, yes, I even have a journal to keep track of his bathroom events. This is why. Having “normal” stool is extremely important. If his stool is too hard, Theo will have intense painful tummy cramps (he calls gas bubbles) followed by painful pooping. Many of the medicines cause constipation. Theo has cried many times while sitting on the toilet because his stool is so hard and it hurts so bad. On the other hand, Theo also takes medicine that can cause diarrhea, also dangerous. Diarrhea can be a sign of infection so it is taken very seriously. One week he had multiple episodes of diarrhea (which I will explain later), so we were ordered to get a stool sample and deliver it to the hospital lab. I know… ewww gross. Well, it comes with the territory and to be honest, Luis and I are both so used to it. None of it bothers us anymore. He gets Miralax (a stool softener) once a day. When his stool is off balance, it is impossible to know how much to give. It’s a guessing game. Tummy cramps? Give more and hope it’s not too late. Runny stool? Back off. And then hope it all works out. Hopefully it’s not because of a more serious infection or digestion issue going on. Theo has had so many accidents that during times like these he is constantly concerned about having poop in his underwear. He asks us to check often throughout the day and sometimes in the middle of the night. Again, we don’t mind. Theo’s five year old bum is still the cutest in my opinion.

So now let me explain about the episodes that lead to the stool sample. No, I do not love writing about Theo’s stool, but this is important. I’ll just get straight to it: Imatinib. Oh how I wish you never came into our lives, you trouble making, stress causing, extremely expensive drug (that we also love because it will help save Theo’s life)!! Always a battle to fight with Imatinib. Here is the latest. I called the pharmacy to order a refill of Imatinib. The liquid suspension form of Imatinib is made in the IN-patient pharmacy at Seattle Children’s Hospital, then delivered to the OUT-patient pharmacy where I pick it up. I received a call from out-patient pharmacy informing me that the suspension they received was very chunky and so they had to send it back to have it mixed again. When I picked up the “newly mixed” suspension it still looked very chunky. Oh well, it’s not like they can just take it back. I have to either use what they give me or try another way to deliver the medicine (not happening). Theo gets anti-nausea meds every four hours these days so I figured that would help combat any extra tummy upset from the chunkiness. We know that Imatinib is very hard on the stomach because of the thick outer coating and causes a lot of nausea. The more mixed and consistent it is, the better. So remember the day Theo pooped his pants? Ugh, poor guy. Later that night, after I gave him the chunky Imatinib, he threw up in bed and his NG tube came out. Talk about a traumatic messy ending to a rough day. Fortunately, with Papa next to him to hold his hand and help him breath, and my still on point NG tube insertion skills, the tube went back in and we eventually went to bed. And that’s when the episodes began. For the next several days Theo would either throw up and/or have diarrhea immediately after getting THAT particular Imatinib suspension. His NG tube came out again a couple of days later… and went back in. Yes, I’ve still got it! Giving Theo a dose of Ativan before Imatinib helped prevent him from throwing up but he still had diarrhea. I would wait for Theo to fall asleep, give him the Imatinib and then lay next to him (puke bag in hand) listening to his stomach rumble and “talk” to me loudly. Then, without warning, Theo would jolt up in bed and alert me that he needed to be taken to the bathroom immediately! So how did we know for certain it was the Imatinib? Easy. Normal stools during the day, no outside nausea, and no fevers. Plain and simple. Theo’s doctors agreed with us but ordered the stool sample just be safe. When I called the pharmacy to request an new refill, I was told it would not be possible. My insurance would not cover an early prescription refill. Oh, is that so?? All it took was a phone call to override that decision. Fortunately, we have an excellent insurance case manager who knows me well by now and has made life much easier for us when it comes to Theo’s prescriptions. I picked up the new suspension of Imatinib on Thursday, November 19th. Sure enough, no more throwing up, no more diarrhea. Problem solved, boo-ya!

Now, I can finally move on to write about something more fun: FOOD. Yummy delicious food (according to Theo). I don’t know about you, but I find it incredibly fascinating that Theo can consume so much food and has such bizarre specific cravings. We’ve been through steroids six times now, and I’m still shocked. For Theo, food equals happiness. And what made Theo happy this round? Quinoa. You see, Theo, like many of us, associates happy memories with food. Theo spent three years at a daycare where he ate amazing food every day. He loved his time at that daycare and still talks about all the fun times and friends he had there. In fact, most of his cravings while on steroids are of the food he ate, that Lorna made for lunch. One morning Theo told me, “Lorna used to make a dish, it’s not a soup, and it has little tan beans in it and black beans and tomatoes. I want that”. Ummm ok? After playing a wild guessing game with him (NO it’s not lentils) I gave up and called Mari (owner of the daycare). HELP! Theo was having major food stress and was not going to be happy until I made him the “dish with little tan beans”. Turns out to be quinoa cooked in chicken broth, sautéed onion and garlic with spinach, peas, black beans, and tomatoes. Theo was so happy he gobbled up the quinoa dish for breakfast and dinner (or on the side) almost every day for weeks. I owe a HUGE thank you to Mari for saving us once again with numerous recipes of the food Theo desires. If Theo is happy, we are all happy. Now just for fun, let me list off a few other items Theo fancied for breakfast. Dumplings, rice and bean burritos, waffles, plain noodles, and of course, popcorn. Yes folks, all for breakfast, lasting from the moment he woke up until about 12pm. Recently he has been having a lot of corn on the cobb, ravioli, and plain white sticky rice. Luis and I were just discussing a new ache we’ve been having in our legs recently. Perhaps it has something to do with the 50 plus times we go up and down the stairs in the morning to prepare Theo’s food and take dishes up to clean them. (Bedroom is downstairs, kitchen is upstairs). Seriously, 50 times just in one morning, non stop. He breaks for nap, then it starts all over again in the afternoon. It makes me wonder, does Theo have a hollow leg, too? We will be relieved when Theo goes back to his normal eating habits, but also thrilled he still has an appetite!

Today Theo is weak. Today Theo does not want to leave the bed or be left alone. Today Theo is losing his hair… again. But what about tomorrow, or the day after that, or next month, or even next year? What does life look like when this is all over? When we can all return to our “normal” lives? When we have a vaccine and COVID is no longer a threat and Theo is clear of cancer? Well, for one thing, I won’t be checking his underwear for poop, I can tell you that much. And according to Theo, if I need a new job I can be a nurse because I am “really good at putting feeding tubes into noses”. Aww thanks Theo. But honestly, I don’t know and I don’t want to think about it. I just want us to have time to rest and digest. The first night Theo got sick and his tube came out, he had just eaten a pile of chocolate chip cookies for dessert. You might say that he regretted it later when it all came back up. The next day he said, “today I do not want cookies for dessert… it’s too much cookiness”. Oh Theo, I could not agree with you more. In every sense, it is too much. If anyone is full of it and needing this to be over, it is Theo. He is the one being brave and strong every day. He is the one who is feeling horrible and in pain. He is the one who is sick and has cancer… for now. There is light at the end of the tunnel. There are sunny blue skies in the forecast. The future is bright. Until then, we will stay safe and keep our distance from chocolate chip cookies.

As for keeping our distance from the hospital? NO LUCK. We’ve known that a fever at this time during the phase was very likely. Luis and I just hoped that Theo would not have to spend Thanksgiving at the hospital. We decided it was best not to make a lot of food in case things went south. Theo had requested to eat turkey and mashed potatoes with gravy. Papa delivered and whipped up the most delicious turkey like it was nothing. It was a lovely little family Thanksgiving, at home together, me with my two lovies sitting at the dinner table! Toasting to all we are thankful for. It was delightful, and we enjoyed every minute of it. We made it through the holiday, well… almost (sooooo close). Unfortunately, Theo spiked a fever later that night. By midnight we were on our way to the Emergency Department and by five am we were settled into our room in the Cancer Care Unit. As my grandma Ethel used to say, “that’s the way the cookie crumbles”.

To be continued… in the mean time, be safe, be kind, spread love. Good night.

Hospital days

“Art finds a way to be constructive. It becomes heat in cold places; it becomes light in dark places.” – Barbra Streisand

Winter Is Coming

Seasons change. The days are now shorter, the nights are cooler. The sun barely shines over the tallest trees. No more sandals, no more long lines at the ice cream shops, no more late nights swimming in the lake. Our iced lattes have been replaced with hot pumpkin spiced lattes. Summer BBQ’s have been replaced with fall night fires. No longer worried about mosquitos outside because now we have spiders inside. Hot summer days are in the past as we embrace the radiant changing colors of fall and look forward to winter days ahead, playing in the snow. I can smell it, touch it, even taste the difference in the world changing around me. Evolving, adapting, spinning around me. Like the seasons change, so does our journey. Moving onward to the next phase. Discovering and learning about ourselves in ways we have not yet seen. Ready and waiting to see where the wind blows. The cold is running deep into my bones and the darkness is closing in. It is time. The season of Theo has changed.

If each phase of treatment was a season, then Interim Maintenance was my summer. A summer filled with blue skies, warm weather, and endless outdoor adventures. For the first time in nine months life seemed “normal”. Theo was almost himself again. I had forgotten how much energy a five year old can have. How carefree and daring young kids can be. His independence and confidence returned in full force, allowing him to take more risks and do more on his own. My first reaction was to be overprotective and overly cautious. I’m so used to watching his every move, helping him get in and out of the car, waiting for something to hurt or a fever to appear. Is he nauseous? Is he in pain? Is his ear bothering him? Is he pooping ok? Oh no, why is he so tired all of a sudden? Am I going crazy?!?! Sometimes I feel like I’m caring for a fragile glass egg, which at any moment could crack or break from it’s surrounding environment. It took some time, but eventually I was able to let go of that anxiety and just enjoy Theo being… well, Theo! I can’t wait to get back to that again.

Welcome… or should I say, welcome back to Delayed Intensification Part 1… #2! Sound familiar? It should. Yes, we have been here before. If you don’t remember, it’s ok. You can easily scroll down to my blog entry titled, Food Fight, if you want the gritty details. Not that I expect everything to be the same. I’m no fool! I learned my lesson after we finished this phase the first time, remember? In my blog entry titled, Dazed and Confused, I ended with the quote, “Things never happen the same way twice, dear one” by C. S. Lewis, Chronicles of Narnia. So honestly, this is like any other new phase of treatment. We will take it one day at a time, preparing ourselves the best we can. Using what we learned from previous experiences but not assuming or trying to predict what will happen. Theo has endured ten long hard months of chemotherapy. Sure, the drugs and schedule are the same but Theo’s body is not.

Which is worse? Knowing what is to come? OR Not knowing anything at all? I don’t know, but what I can tell you is that I am very much dreading this phase of treatment. Theo ended up with a serious ear infection and fever that got him admitted to the Cancer Care Unit for ten days the last time he went through this. It’s not the hospital stay that worries me. It is WHAT will cause the hospital stay that is my concern. I worry about his susceptibility to infections and how bad they can get. The long term effects and how he will recover. Staying in the hospital is not a problem… as long as Theo is in no REAL danger.

This is Delayed Intensification Part 1. Do you see what I see? (IT MTX means back poke) Theo jumping out of his skin with excitement to go to the sleepy time room! After at least one month of Theo asking me daily, “when is my next back poke?” I was finally able to tell him it was time. And oh boy was it amazing. Theo interviewed each one of his stuffies to see who would be the lucky winner and join him (and Bobo of course). Each time Theo gets sleepy milk his reaction becomes more and more dramatic. His eyes roll a little longer, his voice quivers louder, and he smiles bigger. Like he has to show us just HOW much he really loves it. It is so sweet. I know it is the best he has felt in a long time and so I am happy he can enjoy even five seconds of that floating on clouds good feeling. The following four weeks of Part 1 consist of IV chemotherapy in the infusion clinic every Tuesday. Theo will thankfully receive his last dose of PEG on week two. Remember, this is the dreadful medication that nearly one third of patients have a serious bad reaction to. Theo, so far, has handled it without any problems. Vincristine, the drug that makes hair fall out, is also making its last debut on those four Tuesdays. Theo, who finally and happily has his hair and beautiful long lashes back, might be saying good-bye to them one more time. Doxorubicin, that sneaky devil, is also in the schedule on Tuesdays. The culprit for nausea and making Theo’s blood counts plummet to nearly ZERO towards the end. Throw into the mix a couple weeks of steroids and there you have it folks. Buckle your seat belts, it could be a bumpy ride.

Knock knock. Who’s there? Steroids… No not again!! Ugh….. what can I say that I haven’t already said before? There are two steroid pulses in this phase: steroids twice a day for one week, then one week off, then twice a day again for one more week. It is NOT fun. Theo is NOT Theo. He is someone else with a completely different personality. Within hours of taking his first dose of steroids, Theo changes. Like someone flips a switch and suddenly Theo is gone. This time he has turned into this serious, adult like, extremely sensitive person. The other night I was so excited to tell him a story that I thought was sure to make his belly ache from laughter. So I was shocked when I was the only one laughing. I felt like a comedian on stage telling a joke, waiting for the audience to react. All I got was silence. “Tap tap. Is this microphone on?” Theo often seems to be lost in thought. After dinner one night he said with concern, “I’m really trying to think about what I’m going to do. But I just don’t know.” Such a strange thing to hear coming from Theo, who usually knows exactly what he wants. Searching for a silver lining, I realize that getting through his kindergarten lessons the past two weeks has been super smooth and easy. We have far fewer interruptions and distractions due to his lack of wiggles, silliness, and jokes. But I’ll be honest. I prefer the wiggly silly Theo MUCH more. Physically he has slowed down significantly. He does not have much desire to leave the bedroom (or his bed). He is still stronger than ever (with the exception of some shaky hands, again, steroid related). However, his preference these days is to “chill” in bed, draw, and of course, do puzzles verses bouncing, running, and battling like he’s known to do. In fact, Theo puts himself to bed these days, earlier than expected. Hey, with this gloomy weather? We are happy to go to bed early with him!

Nausea is never an easy one to predict. So we are following the plan that we used last time of anti-nausea meds every four hours for three days following chemotherapy on Tuesdays. So far so good. Nutritionally speaking… it’s a struggle, but at least he is eating. It is so utterly frustrating to not be able to help someone when it is all you want to do. To watch them stress and worry without any kind of hope for a solution. Especially when that stress is about food. Theo is incapable of making a decision. It is bizarre. He is upset and hungry (aka hangry) and the ONLY thing that will make him feel better is to eat some “delicious food”. Go ahead, name every possible food item you can think of. Seriously. Pizza? Calamari? His beloved enchiladas? How about ramen with toasties? The answer is NO. Popcorn? Wait a minute… did you just say popcorn?!?! Hold on folks, I think we’re on to something. POPCORN for the win! Finally, something Theo decided to eat, to enjoy, to be happy about! Popcorn for breakfast, lunch and dinner. Beyond the popcorn, every day is a bit different, a bit of a guessing game. Maybe he’ll eat a lot, maybe he’ll surprise us with a new food craving. Who knows!! He suddenly started asking for bananas with Nutella, sometimes eating two or three of them in one day! Theo has been eating other foods, too of course. Food that Papa makes because he is the master chef that creates the BEST food (Theo’s words and I agree 100%). If Luis makes pasta, Theo is eating pasta. If Luis makes soup, Theo is eating soup. Luis makes food magical. He knows what to do, what to make. Theo won’t always admit it right away. He might say, “I’m just not hungry for that right now”. But give him a minute. Let Theo watch Luis cook, help add some spices, smell the food, and I guarantee you, he’ll be gobbling it up in seconds. Mis amores y mis cocineros.

Being Theo’s mother, nurse, teacher, and friend is so overwhelming, suffocating, and stressful. But so is being his father. I crave time away from Theo. He is stuck to me like glue. Luis craves time with him. Like me, Luis wants to be wanted, to be snuggled, to be admired. He wants time with Theo as a loved, appreciated father, not as a servant. Unfortunately, being a servant for Theo is the reality for Luis these days because that is how Theo treats Luis. I know that one day when this is over and Theo is older, Theo will gravitate more towards Luis and they will have more special time together without me. I know it. Theo will want to spend more time with Papa and I will be jealous. I know that one day we will have time to go on adventures, to eat at the dinner table as a family, to go on a vacation!! Luis and I will have time as husband and wife. Imagine that, like a real couple! To be able to sleep in our own bed without Theo (yup, that’s right. Theo sleeps in our bed every night). I know that one day we will have time to be a family again. But right now, Theo has to be with me while Luis works full time. Thankfully Luis is working his butt off to provide the income our family needs. I never imagined that I would be able to spend this much precious time with my little lovie. It is devastating that the reason is because he has cancer but I’m grateful for the special time we have together. I do and will always cherish these days. I have said this so many times (at every age probably) but I wish I could freeze him! Five is such a fun age. I love him so much I just want to squeeze him tight and never let go.

I often think of the days when Theo was just a baby. Smothering him with kisses as he squealed and laughed in my arms. His body glued to mine in the baby carrier for hours on end throughout the day. Sleeping with him on my chest in the morning. He LOVED IT. But, I loved it more. There was a time when changing his diaper meant endless giggles and tickles on the changing table. I knew my time of kisses, snuggles and sweetness would not last forever. So when I give Theo a hug, I hold on a little longer, squeeze a little tighter, and sneak in as many gentle head kisses as I can before he pushes me away and wipes the “kissy marks” off his head. When I asked my mom, “when does it end?” she told me my brother was about six years old when he stopped wanting kisses. Well… that time has come even earlier for me. At five years old, I am already getting shut down HARD to share my affection. I now have to negotiate for a hug or kiss with Theo. My amazing parents, mother and father of three, have my heart and permission for hugs and kisses whenever they please.

“To appreciate the beauty of a snowflake, it is necessary to stand out in the cold.” – Aristotle

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