It is 9:26am. As I sit here in the hospital room all I can hear is the feeding pump gently and rhythmically pushing formula through the NG tube. Silence. I am not used to it. I am waiting for the panic to begin. For the moment Theo wakes up and starts screaming in pain or crying in misery. I am waiting for him to yell over and over again with swollen red eyes that he wants to go home. I am waiting to see him suffer through another day. Silence. He is asleep still. Comfortable from the oxycodone delivered to his body every four hours. No more pain. No more panic. The storm is behind us and now he can rest and recover. It has been almost two full weeks since the start of Consolidation Block #2. Two weeks of hysteria, anger, tears, and rage. Today I will not cry. Today I will not be angry. Today there is silence.
Cancer is UGLY. It is tragic, nasty, and horrid. I do not want to be an eternal rain cloud. But this is real. I do not hold back. Here in this blog you will not just get the steps of treatment but how it FEELS to go through it. This is our story. As optimistic as I am, I cannot pretend that everything is OK and just look on the bright side all the time. There will be better days, plenty of them. These were NOT them. I wish I could post these updates in real time. To tell you what is happening RIGHT NOW verses what happened three weeks ago. However, it takes time to process my emotions and organize my thoughts. Life is a yo-yo right now, a constant bouncing of ups and downs. So even though this update is a drop to the bottom, know that we always bounce back up again!
Warning: Continue reading at your own risk. Content may cause your heart to ache.
You want to know what it’s like for a child to have leukemia? You want to know what treatment is really like? You sure? Ok, here it is. Don’t say I didn’t warn you. The doctors warned us of many events that were likely to happen going into Block #2. They told us it would be harder. They told us mouth sores were likely to happen. They told us he might need an NG (nasogastric) tube. They told us Theo might need to stay in the hospital longer. Guess what? They were right. But it didn’t matter. Because nothing can help prepare you for the many long days and sleepless nights, watching your child suffer, mentally and physically. By the end of day ONE Theo had cracked the code, put two and two together. Being at the hospital means NO FUN. It means being attached to an IV pole and getting woken up constantly to do things you don’t want to do. It means pain. He was more aware than ever of what was going on. Listening to every word of every conversation. One day the doctor came in to talk about Theo’s recent weight loss. She asked Luis what he normally weighs and he answered, “I think about 18 kilograms”. At that moment, the seemingly asleep Theo chimed in with the quiet correction, “19”. We couldn’t sneak anything by this kid. He knew that he was in for a doozy and no one could fool him into believing otherwise.
After Block #1 something changed with Theo. My calm, sensitive, silly boy, was starting to have panic attacks over things that normally would not be an issue. Like taking pills. Before Block #1, Theo could pop the two and a half Imatinib pills down his throat like it was no big deal. He could gulp down a full glass of water in seconds. Now, I ask him to drink water and you’d think I was asking him to drink hot lava! Theo started working himself up so much to the point of vomiting. There was no way we were going to get through six days of taking oral medicine multiple times a day without some changes. The nurse watched as Theo struggled hard (for almost 60 minutes) to take his first round of four medications following his lumbar puncture procedure. She said to me, “this is not sustainable.” She was right. Those eight pills at 12am were not going down without serious help.
It was time. Theo needed an NG tube for medicine delivery. Enough was enough. We knew how helpful it would be and from talking to the nurses, it sounded pretty easy to have it placed. HA! If only that was the case. Placement of the NG tube is NOT EASY. In fact, the first week of having an NG tube was not easy. Let me explain. Imagine the feeling of a fat plastic spaghetti noodle getting shoved up into your nose then traveling down the back of your throat until it reaches your stomach. It is sure to make you throw up. Now try swallowing or talking. Unpleasant I’m sure. Ask Theo, he’ll tell you. Feeling violated and upset about the new foreign object in the back of his throat and the sensation of liquid moving through it, Theo could not calm down. Not even the Ativan (used to treat anxiety) helped. All it did was make him really high then freak out because he didn’t feel “normal”. It was a full week of screaming and panic every time medicine traveled down the tube. I don’t know what I was thinking. That once the tube was in, we were set? Easy peasy? Like magic, medicine anxiety would just disappear? YES. That is exactly what I thought.
It was a rough first day. Correction. It was a nightmare. Theo as usual, was excited for the sleepy time room. Then it took a dark turn with the first NG tube placement. Like I said, not easy. We were not prepared for it to be such an ordeal and I was foolish to think that it was a “one and done” kind of situation. Brace yourself, here comes the storm!! At 9pm Theo threw up all of the meds that had just been delivered AND the NG tube. He needed to take all the medicine over again so he reluctantly decided to take them orally. It took one agonizing hour to get four pills down, two syringes of bad tasting stuff in, then more pills crushed in yogurt swallowed. One… final… pill… to swallow. Almost done! NOPE. Theo vomited. Again. The last hour of tears and stress for nothing. After talking to his team of doctors it was decided he needed another NG tube ASAP. It is absolutely necessary for Theo to get his daily dose of Imatinib. It takes priority over all the other oral medications. So at 2am we went through it all over again. More Ativan, more screaming, and another NG tube placement. Twice after that I had to wake him up to go pee. I had to fight him, I mean, FIGHT. I held him down and pulled off his underwear while he screamed at me. I’m not sure if it was the Ativan or just that Theo was so angry and fed up with everything, but he was in a terrifying rage all night. That finally put me over the edge. I’d say it was around 5am when I finally lost it and broke down with such intense anger and sadness all I could do was cry.
I wish I could tell you that it got easier. I wish I could tell you Theo stopped crying. I wish I could tell you that we eventually got some sleep. Of course we did… two weeks later! Now looking back at the rest of our hospital stay, it was a blur of bad feelings and emotions: tired, angry, sad, and frustrated. How did Theo feel? My guess is that it’s a lot like that feeling of being dog sick. You have no energy and you feel like you got hit by a train. You are constantly being touched, poked, examined, and told what to do. You’re in pain and on top of that you are throwing up all over yourself and pooping your pants uncontrollably. How would you feel? Theo was FED UP. Oh and he made sure we knew it because he said it several times a day and yelled at us constantly. Telling us not to talk, “nope, no, no talking, zip”, “no more medicine I say” and yelling at me, “I’m not going to be your best buddy anymore!” because I didn’t wipe the drop of pee off his leg fast enough. But even through all the pain and frustration he knew he was not himself. One night while wiping him down with chlorhexidine wipes, which he hates, I had enough. I told him since I “can’t do anything right” according to him, he could wipe himself and get himself dressed, and I walked away. What he said next made my insides turn to mush. He cried out to me, “I’m so embarrassed. I’m sorry, I don’t mean to be mean. I just want to feel normal.” Oh my sweet boy, I am so sorry. “Mama”, he said. “I’m having a hard day”. Yes, my boy, you are. You are having a very hard day.
Hand smack to the forehead. Theo said it. “Oh this just keeps getting worse!” On day five, Theo was scheduled to get Daunorubacin. Remember that one? The chemotherapy drug that turns pee reddish-orange. A possible side effect, when given a large dose, is damage to the heart tissue. Therefore, another drug, called Dexrazoxane, is given along with it to protect the heart. I was at home taking a break when it happened. Unaware of the extreme terror that was occurring back at the hospital. The text from Luis read: RUN HERE NOW. All it took was a second. One drop. Not a minute after the drug was delivered into Theo’s bloodstream did his throat start to close up. He was having an acute allergic reaction. I am so glad Theo was able to communicate his feelings. He told Luis, “Something is not right. I need help.” Theo was shaking in Luis’s arms. “How am I going to get through this?” He asked. Luis responded, “You will get through this. I know you will because I am your papa.” Theo, comforted by his papa said, “Oh. Yeah”. I am so glad Luis was there with him and caught it so fast. I am so glad the hospital staff acted so quickly. It only took seconds for the entire 7th floor staff of the cancer care unit to flood into our room. Theo was given a shot of epinephrine to his leg and oxygen to breath. The ICU nurses kept a 24 hour watch on him just in case the reaction came back. Fortunately, Theo remained stable and safe. Ok, time to take a deep breathe. We are almost done… or are we? Ooooh we are so close!
Six days admitted in the hospital turned into eight. Theo could not leave the hospital until his body cleared the Methotrexate. Bad news: the longer Methotrexate stays in your body, the more likely you will have side effects, like mouth sores. We waited (not so patiently) every morning for the doctors to give the report. Finally we got to go home, with the promise that Theo would drink a minimum of six cups of water a day. And we didn’t leave empty handed! Congratulations Theo! You have won the grand prize! Because you have lost so much weight and have a hard time keeping food down, you get a 30 day supply of Complete Pediatric formula! But wait, there’s more! Your gift includes 30 feeding tubes and your very own feeding pump!! Hooray! Well, I can’t say we didn’t see this coming. Like I said, we were warned. It was a big step to get the NG tube, but we weren’t expecting it to be for feedings. Only medicine delivery. Theo is an excellent eater. He enjoys GOOD food. He is not a picky eater either, in fact, one day he told the nurse that he could not wait to go home and eat fried octopus! So when Theo stopped eating, or eating very little, it was strange. His mind wanted him to eat but his body said no. Soon, it hurt to even move his mouth. Mucositis. Painful open sores in the mouth. It can be so severe that the sores travel down your throat, through your body all the way to your butt. OUCH!
We wanted to feel good about being home, but we carried more stress with us this time. Luis and I were overwhelmed with the amount of care Theo needed. Delivering meds, managing his pain and nausea, and pushing him to get the water intake that was required was a heavy load. The next day he had an appointment to get his blood counts checked. Theo was in urgent need of both platelets and blood. The hospital was the LAST place Theo wanted to be. In the seven hours it took to receive both transfusions, Theo’s anxiety and dread of being back at the hospital escalated like a tea pot of boiling water. The heat inside him rising until he couldn’t take it anymore and his alarm whistled. By the end of our visit he was in full panic and rage mode. He spiked a fever and that did it. One day after discharge and Theo was admitted back in to the cancer care unit at Children’s hospital. On one hand it was upsetting. Really? After eight days we are back again?! But on the other hand it was oddly comforting. Theo was just where he needed to be. In a place where he could get all the care and medical support he needed while having mama and papa by his side. Being back in the hospital, while not ideal, helped lift some of that stress off our shoulders. Yes, five more nights was a lot, but necessary. We were not allowed to leave until three things happened. No fever for 24 hours, no new blood culture growth (infection causing bacteria) for at least 48 hours, and an absolute neutrophil count (ANC) of at least 200. The chemotherapy destroys the bone marrow’s ability to make new cells. Once the bone marrow recovers, it starts making red and white blood cells and then neutrophils again. Once the ANC goes up, the tissue will start to regenerate in his mouth and the sores will heal. So really, it just takes time.
His last night in the hospital he got sick in the middle of the night and threw up his NG tube, even with me holding it in place. I was so upset. I definitely overreacted. Not again!!! How were we going to get through this?? The next day an entire team of nurses and hospital staff showed up to give Theo light sedation for the NG tube placement. It was so helpful, but not something we could just re-do every time the tube came out. So when Theo threw up the NG tube AGAIN later that night, a fire lit up under my ass and I told myself, “OH HECK NO”. I grabbed the NG tube and shoved it back up Theo’s nose while he was still gagging, taped it to his cheek, checked placement with a stethoscope and success!! I couldn’t believe it. I’ve had to do that a couple more times… still works!
Five days, a couple doses of morphine, round the clock oxycodone, and one more NG tube later we came home again. Only this time we were all feeling much better. Seeing Theo smile and laugh is the greatest joy in my life. Going two weeks without either crushed my heart. We did it. THEO DID IT. Another block down… ONE TO GO. And when Theo throws up the NG tube again? No worries, I got it. Wind settles. Calm heart. Rest my mind, the storm is behind.
We are not alone. There are so many stories of heartache and pain of parents watching their child hurt and suffer. My story is one of many. In fact, many of you reading this right now probably have a similar story of your own. A time when you felt so emotionally destroyed and defeated. A time when all you could do was cry, whether it be from a personal struggle or while taking care of a loved one. We all know pain. We all have a few dents and cracks in our hearts. Mine are healing. I don’t know what I would do without my family. My husband, Luis, is my rock. He wears many hats throughout the day: strong papa, loving husband, chef, and nurse all while working a full time job. My parents are always there to listen. Always giving me encouragement and loads of compliments (or a big bear hug when I can’t stop crying). And of course I have the most amazing friends in the world who give me support without ever asking. There is someone I am especially thankful for. A mother of a child with leukemia and recently a dear friend of mine. Thank you for checking in with me, giving me helpful tips and advice, knowing exactly what I’m going through. There is strong healing power and comfort when talking to someone who is IN YOUR SHOES. I want to thank all of you for following my story, for listening and being here with me and sharing your stories. Like I said earlier. There will be plenty of better days. Days when Theo will be laughing and “battling” his spider-man stuffy. Days when he will want to get out of bed to play. Days when we can look back on this time and be happy we got through it. I can almost taste it. The brightest red strawberry hanging ripe on the vine. Just one bite makes life so sweet again.
“All the world is full of suffering. It is also full of overcoming.” – Helen Keller
One thought on “Red Sky in Morning, Sailors Take Warning”
Kelly, I’ve been following your posts. I am deeply encouraged by your strength and tenacity. I’ve always know you were kind and gracious but now I am sure your an angel. Keep up the great work. I love hearing about your sons progress. He’s earning his wings everyday.