Tempus Fugit

The elephant eats. The elephant eats. The elephant eats to see some beets. He eats some beets. He eats some beets. He eats some beets to not eat meats.

In case you didn’t know, Theo is the BEST rhymer of all timer. He came up with this poem one day after hearing me read the poem, “The Bear Went Over the Mountain”. Are you familiar with that one? “The bear went over the mountain. The bear went over the mountain. The bear went over the mountain, to see what he could see. The other side of the mountain. The other side of the mountain. The other side of the mountain, was all that he could see.” Theo gave me the most puzzled look and then just started to laugh. “Really?!? That’s it?” He said through his laughter. He figured if someone can make a poem that simple, so could he… and better. Theo has heard me recite many silly poems for his online language arts class. He can hardly believe that a real poem can be so silly and sometimes not make any sense at all! He often criticizes them for not rhyming that well either. Like in “Ladybug Ladybug” the words “home” and “gone” do not rhyme! At first, I did not see why I should bother reading some of the poems, just because of how nonsensical they are. Who wrote this? Why is this still being taught today? What does this even mean? Aren’t there other poems we can teach our kids? But not Theo. He finds the poems so funny. The more illogical and absurd the poem, the better. It has turned into a fun game for him to create a funnier, better rhyming poem than the one I read to him. Now that’s what I call fun learning!

Who’s ready for a swim?

Maintenance continues…

So where were we? Oh yes, back in April. It’s time to play catch up! Starting with Theo’s back poke on Tuesday, April 20th. As usual, the first appointment is for labs, aka a blood draw to check blood counts. Then a visit with the doctor to go over the counts, review Theo’s chemotherapy and plan, ask questions, and address any concerns. The last appointment of the day is (fingers crossed) a lumbar puncture to receive intrathecal methotrexate, aka back poke. I’m so glad Theo loves getting back pokes. Otherwise days like these can be very long and slow moving. There is a lot of waiting time between the appointments. Add that to not being able to eat or drink and that can make for one cranky kid! Theo, however, is always in a great mood. He can barely contain his excitement for the sleepy time room. Shouting to every nurse that walks by about it and busily preparing Bobo and his stuffies for the sleepy milk. Theo is such a delight. He has a thoughtfulness about him that runs so deep it radiates like the bright sun shining on a blue bird day.

Sand in toes, fries in mouth

Well folks, it looks like the port is staying in for a while. Theo made the decision to stop trying the hand pokes. He prefers to get his port accessed. He says it is much easier for him because he is used to it and it doesn’t hurt. We completely understand of course. So there you have it. He has agreed to give it another try later, maybe in the next couple of months. Although, his port will come out no matter what in January 2022, when his treatment is complete! That’s only eight months away!!

So on with the labs and provider visit… Theo’s lungs sounded much better, however, his doctor could still hear some wheezing in his right lung. We were instructed to continue using the albuterol inhaler until ALL signs of a cold/cough are gone and his lungs are crystal clear. His ANC and hematocrit looked good, but his platelets were low, just above the threshold at 58 thousand. We were instructed to return in one week to check platelet levels and if needed, receive an infusion of Immunoglobulin G (IgG). Everything else looked great! There was no pain or other concerns to report or discuss. Just to make sure he was okay for anesthesia in the sleepy time room, Theo’s doctor asked the anesthesiologist to listen to Theo’s lungs. Dr. Karl has been the anesthesiologist for every single one of Theo’s lumbar puncture procedures. We LOVE her. She is Theo’s favorite doctor (just confirmed). Dr. Karl and Theo get along so well. In fact, when she came into the room to listen to Theo’s lungs, they got distracted having so much fun that the nurses had to come looking for her and pull her back into work. She cleared Theo to get a back poke, which, we were all very happy about.

Another day at the beach

On Friday, April 23rd, I received a call from Theo’s doctor. His IgG level was at 257. An infusion is recommended for levels below 400. So on Tuesday, April 27th, Theo was back in clinic getting an infusion of IgG. It is just like getting blood or platelets. When receiving blood product, there is a risk of having an allergic reaction. Therefore, Theo took Tylenol and Benadryl prior to the infusion. The appointment in total lasted about three hours. We were also informed that Theo’s platelets had dropped to 42 thousand. A hold was placed on all chemotherapy, except Imatinib, for one week. Theo would have to return in one week for a lab visit to check blood counts again. His doctor told us that since Theo had already been on a chemo hold for three weeks earlier in Maintenance, his chemotherapy dose needed to be reduced. The following Tuesday, May 4th, Theo returned for a lab visit with his Papa. It had been months of Theo asking for Luis to go with him to his appointment. Unfortunately, only one parent is allowed to be with the patient during appointments. Luis is extremely busy working full time and more. When Theo was admitted to the hospital, Luis would do his best to come to the hospital and give me breaks so I could leave for a few hours. Since I am not working, my job is taking care of Theo. Taking him to his appointments whenever they need to happen and stay for however long is needed. I have the ability to drop whatever I am doing to rush to the hospital with Theo. Luis does not. But this time Theo was begging for Luis to go with him. (No hurt feelings here). Theo was so proud to show his Papa how brave he is when he gets his port in. So excited to show his Papa how the appointment works. It felt weird not going with Theo, like I was missing out. But I love that Luis was able to be there with Theo this time. They are mirror images of one another. My lovies. Those two old souls are my everything. Fortunately, Theo’s platelets have recovered. The current plan for Theo is to continue with his chemotherapy but at only half the dose. Also included in the plan… TO HAVE FUN. I think we can handle that. With two dogs, a beach two minutes away, a love for nature, and a wild imagination, Theo is having no problem at all having a good time.

Luis and his little helper building a fence

Tempus Fugit. That’s Latin for “time flies”. Grandma Ethel used to joke that it was one of the few Latin phrases she remembered from school. Wow, time DOES fly though! It was only four months ago that Theo still had his feeding tube in. Four months ago Theo was still so weak. Four months ago Theo had no hair. I don’t even remember what Theo looked like four months ago! He is a completely different person today than he was back in January, inside and out. It’s amazing how much he has changed in such a short period of time. Looking back four or five months at previous blog entries, it feels like it was years ago. Last December Theo spent 14 days in the Cancer Care Unit. Today, Theo is playing at the beach, climbing rocks, and doing hand stands. How can this be? Where is my sadness, my anxiety, my fear? I am like a kid who used to be scared of the boogie man hiding under my bed. Always afraid that something bad was going to happen. Waiting for the boogie man to come out and attack at any second. No. Not today. The only sound that wakes us up in the dark is the hooting of the night owl. But this is not the end. There is no end to this fight until there is an end to cancer. I dream of the day that this is all just a bad distant memory for us and Theo. And even when that day comes, we will continue fighting for ALL CANCER PATIENTS in the battle against cancer until we will reach glorious victory!!!!

*You can help in the fight against cancer! Join me on Saturday, May 15th, in the virtual Big Climb. Or make a donation to the Leukemia and Lymphoma Society to help fund cancer research. Please visit my personal fundraising page at http://www.llswa.org/goto/TheoMyHero We are in this together!

Beach days with my beach boy

“Today is your day! Your mountain is waiting, So… get on your way!” – Dr. Seuss

Tomayto Tomahto

A wise and wonderful friend of mine recently gave me a very inspiring and heart warming birthday gift. The reminder that I have so much to celebrate. To think of where I am today compared to last year at this time. It is so true. There has been so much change, so much worry and stress, that most days I forget to appreciate how much happier life is today. It was a beautiful reminder to stop and think about how far along this journey my family and I have come. To remind myself that while change can be painful and exhausting, it can also be marvelous and truly rewarding. Our world is changing every second. We don’t always feel it, we don’t always see it. But we know that every day is a new day and unlike any other. I catch myself more often staring at Theo in awe. Trying to record his movements and expressions in my memory so I never forget his pureness. I want to remember him at every stage of growth before he changes again. When did he get so big? Funny how that question never gets old. You notice that? As a kid, I heard it all the time. “Wow, look how much you’ve grown!” “Well, duh”, I thought. Of course, kids get bigger! People don’t stop growing or changing just because you don’t see them! Now, as an adult, I catch myself saying it all the time. No matter how silly or predictable it sounds, that question comes flying out of my mouth before I have the chance to hold back and recover with a more witty, unique observation of my friend’s fast growing daughter. But really… when did Theo get SO BIG?!?!

Look at that hair!

On Tuesday, March 16th, Theo got his back poke, hooray! His lungs were crystal clear. The cough was almost gone. He was still clearing his throat quite a bit, especially in the morning. His doctor told us that he should continue Cetirizine daily until the end of summer. There may likely be an allergy component to his cough, which is why it was lingering, and the allergy medicine would help with that. The Albuterol was no longer necessary since his lungs were clear. His blood counts had also recovered so he was instructed to start all oral chemotherapy again. Theo’s immune system had made a comeback! Wait… what’s this? An ear infection in his left ear?? Oh brother. Well good thing his doctor caught it early, before Theo had a chance to notice it. Theo received IV antibiotics that Tuesday and the next day in clinic. Way better than having to take a 10 day course of antibiotics at home. The ear infection cleared up faster than you can say “ear wax” 10 times clearly in a row. Go on, try it. It’s harder than you think!

my beach boy

After Theo’s appointment on Wednesday, March 17th, we headed back to Kingston. For the most part, Theo was feeling great. Full of energy and smiles. He is such a positive, happy, silly kid. Even when he is feeling sick he still manages to make jokes and smile. We were not due back to see his doctor for almost five weeks! Wow, that’s a long time. Well, we lasted two weeks. We had some concerns that needed to be addressed. First, Theo was still coughing up junk in the mornings. We didn’t stress about it too much at first, knowing his lungs were clear. Theo was also constantly clearing his throat throughout the day. We made an appointment for Tuesday, April 6th. His doctor took a good listen to his lungs. His once clear lungs were making music again! They had filled up with fluid after only two weeks of not using Albuterol. WHY? Why is it so hard for Theo to shake these viruses? Theo may be in maintenance but he is still taking many medications that purposefully suppress his immune system. Therefore, his immune system is not as ROBUST. It is not working at its full capacity. Immunoglobulin G (IgG) is an antibody that helps protect our bodies against bad bacteria and viruses. Theo’s doctor told us that if Theo’s IgG levels are low, he may be a good candidate for a transfusion of IgG, thereby giving his immune system a boost without changing the dose of his chemotherapy meds. Presently, Theo is back using the Albuterol inhaler.

The other concern that drove us to make an appointment for that Tuesday, April 6th, was some ankle pain Theo was having. Theo is hard to slow down. If Theo is not jumping off furniture or doing his wild Spider-Man moves, something isn’t right. We can usually tell how well Theo is feeling by how active he is. He does not easily complain of pain or feeling unwell. For him to speak up about it means it must be serious. Starting the morning of March 17th, Theo complained of pain in his left ankle. It was completely random, while he was sitting up in bed. It hurt to walk initially, but fortunately the pain did not last long. By the following week, Theo was reporting sudden and random pain in both ankles and his left hip. The pain was great enough to stop him in his tracks, mid run. It was so unpredictable and there were no obvious signs visible to our eye or memorable events where Theo had injured himself. The ankle pain was becoming more frequent and therefore a major concern.

Theo’s doctor had some ideas of what could be happening. One likely cause of the ankle pain could be from long term steroid use. Steroids, when taken for along period of time, can cause avascular degeneration of the joints. In severe cases, kids have needed joint replacement! Wow, the lava in my stomach was bubbling inside me as I listened to the doctor explain all of this to me. But before we went any further into this horrifying nightmare, the doctor needed xrays taken of Theo’s ankles, knees, and hips, to see if there was any abnormal growth in those joints. Phew!! Good news. The xrays showed NO abnormal growth, nothing abnormal at all. Therefore, the pain is likely a side effect of our favorite (haha) drug, Imatinib. Studies show that 30% of patients taking Imatinib experience random musculoskeletal pain. Unfortunately there is not much we can do at this point but just monitor and treat the pain as needed. Presently, Theo is not having ankle pain. Nor has he needed any pain medication. His next appointment in on Tuesday, April 20th, to check blood counts, see his doctor, and as long as his lungs are clear and he’s not coughing too much, get a back poke.

Photo taken by Theo. Backyard sunshine

Before I continue, I owe you all an apology. I made a mistake. In my last blog entry I told you that numbing cream makes the veins shrink, which makes them more difficult to access. That is NOT true. Numbing cream does not effect the veins at all! HYDRATION is key. If the veins are hydrated, they will be more visible and easier to access. If the veins are not hydrated, they will “fall asleep” and become flat. So, in order for Theo to have a successful poke in his hand for a blood draw or IV, he needs to drink a LOT of water. Unfortunately, sedation procedures that use general anesthesia, aka back pokes, require the patient to be NPO (no food or liquids six hours prior to the procedure). Theo drinks as much water as he can the night before, but he is not allowed to drink anything, not even water, in the morning on the day of the back poke. The nurses are so incredibly kind, patient, and gentle. They tried to start an IV in Theo’s hand on Tuesday, March 16th, but his veins were too flat. Again, it became too painful to keep searching for his vein with the needle, so they ended up accessing his port. Accessing his port was so fast and easy compared to starting an IV in his hand. It makes me think, is having Theo’s port removed such a great idea after all? Now I am not so sure. Yes, having the port removed would be amazing, why? There is lower risk of infection (because no direct line to his heart) and also, Theo could play freely without having to worry about hitting the bump under his skin and causing pain or damage. But what happens if the nurses have trouble accessing the veins in his hands and there is no port to access as a backup?? Oh brother, then we’d really be in a pickle. Theo’s doctor’s advice was this: keep trying IV access through the hand. If it works more consistently, then we can have the conversation about removing his port. Bottom line, there is no rush. We have time to keep trying and see how it goes. There is no “better” way to do things. Whatever Theo is more comfortable with. OK, it’s settled, that’s what we are going to do.

On Tuesday, April 6th, Theo prepared for another poke in the hand, Theo drank water non-stop the night before his appointment as well as the next morning. I was hopeful that this time was going to work. Unfortunately, to our great disappointment and surprise, Theo’s veins were too flat. Really?!? Unbelievable. How could that be, after all the water I had seen Theo drink in the last 24 hours? The nurse asked Theo if he wanted her to try his other hand or just access his port. With a shrug, he said, “port I guess”. At this point in Theo’s treatment, it is a non issue. After everything he’s been through, after all the pokes, the nausea, the pain, the icky tasting medicine… why overthink it? What’s the point in worrying about something you cannot control? Just do what you can and move on. We’ll keep trying, but if it doesn’t work, then that’s OK. Moving forward. As Theo will often say now, “tomayto tomahto”.

What have we learned? ASK QUESTIONS! But there is not always a straightforward answer for every question, every ache, and pain that Theo experiences. We believe in and trust Theo’s doctors, their plan, and their research. We are incredibly fortunate that Theo is being treated at one the best hospitals in the world for treating leukemia. Seen by some of the most knowledgeable and experienced doctors with access to millions of recourses. Sometimes the path for treatment is clear and straight. Other times it has twists and turns with layers of thick fog. Don’t forget, most therapy maps are part of a clinical study. And through those studies, researchers and doctors learn how to treat better and more effectively. It is an ongoing process. It is the necessary journey to one day finding a cure.

Not even these guys can handle medicine the way Theo can!

Sometimes Theo is feeling so good and looking so good, we forget that he still has cancer. I mean, this kid is taking chemotherapy every day! Toxic pills that are killing his insides and causing all sorts of bizarre uncomfortable side effects. If I was taking all those meds, I don’t know how I would feel or if I’d be handling it all that well. It is finally spring time. The sun is warmer and fun awaits outside. Does Theo want to go outside and play? Of course he does! But on the days he does not and would rather be cozy on the couch under a blanket, well then, he should. We easily get wrapped up in the need to take advantage of the sunny days. After all we live in the northwest! Sunny days are like gold! Don’t miss out, because tomorrow it might rain and then you won’t see the sun again for another week… or three! We want to encourage Theo to get out and play, be a kid, get fresh air, and meet the neighborhood kids who are always outside playing. We want life to feel “normal”. We want to take back the spring and summer we didn’t get to experience last year because Theo was in bed all day or at the hospital. But what does Theo want? What do any of us want? To feel good and NOT have cancer. So what’s the rush? Let’s just enjoy where we are today. Take a moment to remind ourselves how far we’ve come, Luis, myself, and especially Theo. Today life is better. Let’s celebrate THAT. Eventually, we will go to Japan, Hawaii, Mexico, and of course, to the aquarium. Until then, let’s eat ice cream!!

every day is a good day for a sundae

“Today me will live in the moment unless it’s unpleasant in which case me will eat a cookie” – Cookie Monster

The Next Chapter

We moved to Kingston.

For those of you who are unfamiliar with where Kingston is or what it is like, let me tell you. A 30 minute ferry ride across the water from Edmonds, Washington, it is known as the northern gateway to the Olympic Peninsula. A cute and quiet little town located on the shore of Puget Sound. Beyond the marina and the charming few blocks of coffee shops and restaurants are neighborhoods, farms, local businesses, schools, offices… all spaced out amid the vast green landscape. Kingston is a place where nature’s beauty shines brighter, and the birds sing a little louder. A perfect blend of water, mountains and forest. So many beaches and trails to explore around the Olympic Peninsula, it’s like a giant playground. In Kingston the pace of life is slower, more relaxed. Not a single siren to be heard. Driving to the grocery store we pass pastures with horses and cows while admiring water and mountain views. Traffic? What traffic? Only to get on the ferry during the weekends. It is a 15 minute drive to “Little Norway” aka Poulsbo, the small but touristy town full of clothing boutiques, antique shops, and restaurants. Plus any large shopping center or nursery you can think of. close by. Kingston is close enough to Seattle for when we need it to be, but has the feeling of being far away from the city. There is an innocence about Kingston, like I’ve travelled back in time to when I was a child. To the days of Ernst Hardware Store and Village Lanes bowling alley at the University Village. We are ready for a change, ready for more space, ready for peace and quiet. Kingston is our new home, our new beginning. If you ask Theo how he likes living in Kingston, he’ll tell you, “I don’t like it… I LOVE it!

Mt Rainier view from Eglon

Our commute to Seattle Children’s Hospital is no longer five minutes. Now it takes anywhere from just over an hour to an hour and a half. When Theo has appointments we stay at my parent’s house in Seattle, aka Hotel MorMor and C. We are so fortunate to have had the luxury and convenience of living with them throughout Theo’s treatment and now as a place to stay when we need to be close to the hospital. A life saver. The light that has helped get us through the darkest times. Thank you, one billion times, Mom and Dad. It’s been truly special for all of us, but especially for Theo. Each time we pack our bags and head back to Seattle, Theo stirs with excitement to get on the ferry and see his grandparents, desperately hoping that we will get a spot with the best view.

Lately we have been taking the ferry quite often, in fact weekly. As I mentioned before, Maintenance is all about finding the right balance of medications. The dose that will put the patient’s blood counts in the “sweet spot”. Not too high, not too low. Initially, we thought Theo was on track. Other than the blood transfusion he had on February 2nd, there was no need to change his dose of chemotherapy. However, on February 23rd, we were given the order to hold chemo for one week (except Imatinib) due to low platelets. When we returned the following week on March 2nd, we were instructed to continue holding. Theo’s platelets had gone up to 65,000, but his ANC was down to 400. ANC must be at a minimum of 500 to continue therapy. So now that’s two weeks of holding oral chemo. By the following week, we thought for sure his numbers had recovered. Nope! On March 9th, we returned for a lab visit and back poke. Theo’s ANC had dropped to 300!! If counts do not recover after two weeks then Imatinib has to be stopped as well. Presently, ALL oral chemotherapy is on hold. But the real downer is that Theo could not go to the sleepy time room. Not because his ANC was low. It was actually due to his cough.

On February 5th, Theo was given a broad spectrum swab to check for viruses causing his cough. His swab came back positive for two viruses. It’s been over a month and while his cough is much better now, it is still not completely gone. Every morning he sounds like an old truck motor trying to start. During the day it is more under control but there is obviously some post nasal drip junk stuck in there that he has trouble getting out. At his visit this past Tuesday, March 9th, his doctor detected some slight wheezing in his lungs. She prescribed Cetirizine once daily for allergies and Albuterol twice daily to help open his airways. The doctor thought Theo would be given the green light to go to the sleepy time room because the wheezing is not severe and he wasn’t coughing at all during the exam. As soon as the anesthesiologist walked into the exam room Theo started coughing… and didn’t stop. The more conservative decision was then made to delay the back poke until the following week. Hopefully using the Albuterol inhaler an taking Cetirizine will do the trick of finally kicking that cough to the curb. Theo will return next week for another lab visit and possible back poke. That makes four weeks in a row of appointments. We were not expecting to be back in Seattle that often but at least we have a beautiful ferry ride to enjoy and delicious dinners with MorMor and C to look forward to.

Theo still has his port… but fingers crossed, not for much longer! One good thing about having weekly lab visits is that it has given Theo more times to get used to having a poke in his hand so his port does not have to get accessed. I made the mistake of thinking a poke in the arm or hand would be so easy. He’s had plenty of pokes before (like the famous four that he got when he was first diagnosed and likes to remind us of). It even sounds easier, right? Wouldn’t you rather get a needle poke through your arm instead of your chest? Surprisingly, the first arm poke did NOT go well. We arrived for a lab and provider visit on February 23rd with numbing cream on the inside bend of both of his arms and some on his port site just in case. I was expecting the entire blood draw to take five minutes, maybe. Theo, on the other hand, was terrified. He wanted to know what the nurses were doing at every step. What is that? Will it hurt? Why? Can I see it? Is the needle big? How far does it go in? And on and on. It only got worse when the nurse could not see his vein. Theo’s veins in his arms are small and the numbing cream makes them shrink even more. While the nurses put heat packs on his arm and had him squeeze his fist several times, Theo got so nervous he peed his pants a little bit. After an underwear change, the nurses tried again. The needle went in Theo’s arm but not in the vein. It was too small to find. Theo finally burst into tears complaining of pain after a minute of the needle moving around under his skin in search of the vein. The nurses gave Theo some time to calm down and returned 20 minutes later to access his port. Now that was easy. Like it usually is. No pain, no tears, no fear. Had I made a huge mistake thinking that getting the port out was a good idea? I felt so bad. What I thought was going to be a quick poke in the arm turned into an hour long ordeal. Theo, who always apologizes, even when he’s done nothing wrong, also felt bad and kept telling me between sobs that he was sorry. He admitted that even though he had pokes before, it had been a long time and he just wasn’t used to it. I could have held him in my arms for the rest of the day if he would let me.

Fortunately, Theo has larger and very visible veins in his hands. The nurses told us not to give up. It will be easier next time when they do the poke in his hand. So that’s what we did the next two lab visits and… it worked!! We put numbing cream on both of his hands and port site. Child Life was there with extra support and distraction, a huge help. Theo regained his confidence and cheered after the second time having success getting the poke in his hand. If the next hand poke goes well, the next step will be to take out the port! Hooray!!!

The sun is shining and Theo is laughing. The silliness with this boy never ends. Even after the lights are out, he is still throwing rhymes and riddles at us. Every time Theo turns one year older I catch myself saying, “this is my favorite age”. Since the life and energy has returned to Theo, we can see his true five year old self. It is magical. I have said this many times, how FUN Theo is. It is true and the better he feels the more fun we have. I’m not kidding. Daily I find myself laughing to the point of a stomach ache when we are playing. Luis and I shooting each other looks while we laugh hysterically. Theo is also a love bug who wants to help with everything. He will scramble the eggs in the morning, sweep the floors, combine the matching socks from the clean laundry pile, pull weeds, you name it. We are home together all day while Luis is working full time. Theo is my little buddy, my companion and coworker these days. He keeps me on my toes, especially when I make the mistake of saying the word, “can’t”. That word is NOT allowed. Why? Because you CAN do anything you put your mind to. Theo knows it and reminds everyone when he hears that word. Theo is also a sensitive boy. If Luis and I raise our voice, or get stern with him, Theo apologizes immediately. Sometimes he will get so sad or scared he will cry, saying that he is embarrassed by what he did. As much as I want to hug him while he cries, I do not want him to dwell on these things. We want him to learn from his mistakes and then move on. No silly tears. We want him to be assertive, speak up, and be confident. Theo has never been the kind of kid to run into a room uninvited. To yell out the answer before raising his hand. To grab a toy without it being offered. He would rather wait, be quiet, and know that it is his turn. Life will change drastically for him when he returns to school. My coworker no longer by my side all day. I know it will be good for him. To learn to stand his ground and have his voice heard. To be proactive and know that making mistakes is OK. And when he has a hard day and needs a hug? I’ll be ready to hold him in my arms as long as he will let me.

By the lighthouse in Hansville

Had you asked me ten years ago if I would ever consider moving out of the city, I would have scrunched up my nose making a sour face and said, “Eeeeew NO WAY!” Well, turns out my 30 year old self had no idea what was coming. Not that I don’t LOVE Seattle. I do love it. It is also my home. Seattle is where my family and best friends live. It is such a beautiful city. As much as I love space, I also appreciate the convenience of being able to walk or bike everywhere. To have access to everything at your fingertips, life and people buzzing around you. I have taken full advantage of living in Seattle but now I am ready for something different. My family is ready. Space, for Theo and our dogs to play in the yard. More awareness of nature and wildlife around us. To watch the excitement explode in Theo when he sees a deer walking down our street or a seal sleeping on the beach. I want to go to the beach and have it all to myself. To not fight for a parking spot or have to listen to the conversation of the people sun bathing next to me. I want more quality time with my lovies. Yes, we are going to have FUN!!!! Oh… and did I mention we also got a new puppy?

Maggie

“You’ve got to accentuate the positive, eliminate the negative.” – Bing Crosby

The Cosmos of Theo

Revolution: the action by a celestial body of going round in an orbit or elliptical course; also: a sudden, radical, or complete change.

As earth makes it’s way around the sun, it evolves, it changes. A year long continuous journey for our planet earth. It twirls and spins through years of abuse, pollution, and being stripped of its natural self. Constantly rebuilding and repairing itself. Like earth, our lives are constantly evolving and changing as we continue our orbit. We change the way we live, the way we think, the way we feel. Looking for ways to improve and overcome life’s challenges. Creating stories and making history. Making a closer connection to ourselves and with each other. Challenges change us. Struggles change us. They unlock our potential and reveal the gifts we have. Sometimes, change can make us stronger and better. In earth’s most recent journey around the sun, Theo went through a revolution. His story is now one of the stars. In body, mind and spirit, he has endured radical and sudden changes that I believe, without a doubt, have made him a more brilliant person.

Cool kid

“Mama, what time is it in Japan?” The newest most frequently asked question of the day. In recent weeks, Theo has been talking non stop about wanting to go to Japan. Why? Oh, well let’s see. Could it be his obsession with ninjas or his love of eating sushi? Also, his favorite Street Fighter, Riu, is from Japan. That said, we better make plans to visit soon! We have been spending a lot of time talking about why there are different time zones and why the time changes when you travel, because that is important information if you go to Japan, am I right? Theo has learned about how the earth spins while it orbits the sun. He understands that while it is daytime here in the United States, it is nighttime in Japan. How cool is that? His face, his expression, his hands moving energetically while he told me all of this. Eureka!! Let’s just say… it got me thinking about earth, it’s orbit, the sun, the moon, the stars… the universe, and how we are all mixed up in all of it and making our mark.

My snow angel

Finally… MAINTENANCE. Theo just barely made the counts to start Maintenance on Tuesday, January 26th, 2021. As I mentioned in my last blog, his platelets were having a difficult time recovering from the last phase of chemotherapy. They were on the rise, but very slowly. The cutoff to make Maintenance is 50,000 platelets. Theo had 77,000. His ANC needed to be at a minimum of 500. His was 589. His hematocrit (red blood cell percentage) was low at 23.3% but high enough to move forward. At last, Theo gets to transition into a phase of “normalcy”. This means that Theo should be feeling well enough to be more active, play outside, and socialize (at a distance with a mask of course). Again, if it weren’t for Covid, Theo would be returning to school and going to visit all of his favorite places. But really, we’re just excited for him to have energy to play, feel good, and have fun… to just be a kid again. Hopefully no more hospital stays and definitely no more hard hitting intense chemotherapy!

Presently, Theo is in his third week of Maintenance. So far so good. It’s not quite the five star luxury getaway that I was dreaming of. More like a cozy weekend cabin retreat type of feeling. Hey, I’ll take ANY kind of improvement or positive change at this point. To feel that a weight, even as little as five pounds, has been lifted off our shoulders is incredible. There will be plenty of time for fancy vacations and fun adventures in our future. This is ONE STEP in the right direction and we are so so incredibly grateful for it.

Let me tell you how it’s going. Typically, when a patient reaches Maintenance, there is no need to return to the hospital for at least two or even three weeks. However, because Theo’s hematocrit was low and his blood counts barely made the cutoff, he had to return one week later on February 2nd. Sure enough Theo needed a blood transfusion. Theo had also developed a bad cough over the weekend. It was no surprise then that his energy was low and he needed to rest. We were kept in isolation and Theo was swabbed for Covid. It always gets our hearts racing when Theo gets a cold because the first thing we think of is, “OH NO… what if it’s Covid?!?!” Fortunately the results came back negative. Theo was asked to return for another visit that Friday, February 5th, to check blood counts and get a broad spectrum swab to test for viruses that could be causing the cough and cold symptoms. Turns out Theo had not one but TWO viruses!! He tested positive for the rhinovirus (common cold) and adenovirus (another common virus that can cause a wide range of cold-like symptoms). He was told to stay inside, stay warm, rest, drink lots of fluids, and watch for a fever. Oh man, this is no fun! Isn’t Theo supposed to be feeling better? Oh well, what’s another couple of weeks staying inside all day after doing that for almost an entire year? Not the start of Maintenance we were anticipating, but that’s OK. But seriously, what’s going on? Apparently, there is more to Maintenance than we knew about. A friend of mine gave me a heads up, a little inside scoop about how maintenance meds and doses work (such a valuable friend to have). Very helpful information that made me ASK QUESTIONS and gain a better understanding.

During Maintenance, Theo takes three chemotherapy meds orally. His dose for Imatinib never changes. It is a constant throughout his therapy. The dose for the other two meds, Mercaptopurine and Methotrexate, can be changed based on Theo’s blood counts. For example, if Theo’s neutrophil count is low, it might be that his chemotherapy dose is too high and vice versa. There is a “sweet spot” of where Theo’s counts should be. The ANC sweet spot is somewhere between 750 and 1,500. Therefore, some patients could be getting anywhere from 60 to 80% of their dose to prevent their numbers from getting too low. Theo started Maintenance with his dose at 100%. If his blood counts ever drop too low, his dose percentage will also decrease. If his blood counts are above the sweet spot, his dose will increase. It’s all about finding balance. So what IS too low? Just like how Theo had to make the cutoff to start Maintenance, there is a threshold for stopping chemotherapy. If his blood counts drop below those thresholds, all chemotherapy will stop until his blood counts go back up. ANC will always need to be above 500 and platelets will always have to be above 50,000 to continue therapy. The good news is that unlike other phases he has gone through, Maintenance NEVER gets delayed. The end date remains the same no matter how many times therapy is put on hold. It’s not a matter of finishing a specific dose of medicine, it’s about completing the amount of time being in the phase. That is SO COOL!! Mark your calendars everyone! No matter what, END DATE for all therapy is: January 26th, 2022

Theo the baker, ready to make chocolate cake!

Theos is presently getting 100% of his dose. It has never changed, it never needed to. Theo returned to the clinic on Friday, February 12th for another lab visit. His blood counts looked great. No need for any transfusions, no need to stop chemotherapy. The appointment was short and sweet. We were free to go home. His next visit is on February 23rd. Wow, to go almost two weeks without an appointment seems crazy! I guess we better get used to it. We will also plan for an IV placement in his arm for blood draws instead of doing a port access at his next visit. Theo is super excited about that. If all goes well, we will schedule a surgery to remove his port! No more needles going into his chest, no more box under his skin that sticks out. One HUGE step for Theo to feel like a normal kid again. That and seeing his friends again!! Theo finally got to play with his best friend at the park the other day. It was like medicine for his soul. To see Theo and his friend playing, as if nothing was wrong in this world. Nothing else mattered, they got straight to the fun, being crazy and silly together. Theo’s cough is so much better, it’s almost gone. You know how colds can be… sometimes they drag on forever. So we stick to our pace: one day at a time. Theo may be in Maintenance, he may be feeling better, he may be ready to dive into the deep end, but we are keeping him in the shallow end. As good as he looks and feels, we have to remind ourselves, he is still fighting cancer. He is still taking chemotherapy. He is still highly susceptible to getting viruses, which could interfere with his therapy. I know Theo wants to be outside playing in the snow for hours and run in the rain and splash in puddles all day. He is a five year old boy, after all. You can see it in his eyes. A wild desire for adventure. To jump higher, run faster, and kick harder than ever before. It makes Luis and I the happiest parents to see him bursting with energy. But we have to find a balance as well, with how much we are willing to let go. How far do we let him run until we tell him to stop and wait? How high do we let him climb until we tell him to come down? My Gemini bird is ready to fly… and we are prepared to let him (while holding a net underneath him just to be safe).

Watch out, who’s that? There’s a big kid in town. He’s silly and so witty, the happiest kid around. You may not recognize him, he’s much taller than before. No longer just fuzz on his head, he has hair galore. There’s also something else, something missing on his face. Wait, where’s the NG tube? It’s no longer in it’s place. And what about his teeth? Do they look loose to you? It’s true, he has not one loose tooth, actually he has two! Doing so much on his own, as big kids often do, learning how to add and subtract, and now he’s reading, too! He fights bad guys all over town, he’s so brave and so strong. Always there to lend a hand, to help when things go wrong. He’s sweet as pie and kind to all, he talks to all the flowers. He brings the sun on cloudy days, this kid must have super powers!

“The more compassionate you are, the happier you are.” -Dalai Lama

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