It’s a new year. Time to put away the holiday decorations and say good-bye to Mariah Carey for at least the next 10 months. Time to take a break from airports, shopping, overeating, over drinking, and over stressing. It’s time to start getting serious about that new year’s resolution you made before the ball dropped at midnight. What was it again? Something about getting organized? Or was it exercise? On second thought… WHO CARES?? That’s right. Whether it’s a new year, a new season, or a new month. Any day is a perfect day to do something great or to make a change. That’s the beauty of each day. It is an opportunity. A new beginning. Perhaps even a second chance.
Today is day 34 post-transplant, day 41 in the cancer care unit. That’s right, Theo is still in the hospital. We will officially be passing the estimated stay of four to six weeks. And that is totally fine. Theo is here for a reason and getting the care he needs. So now, let me tell you why we are still here. Let’s back up to mid-December. SO MUCH has happened. I apologize in advance for the lengthy recap, so I’ll get right to it. Theo finally got his last dose of methotrexate on day 11 post-transplant. The doctors were right. The week between day 6 and day 11 are the worst. Even though he was on a morphine drip, he still woke up every morning with intense mouth pain. It hurt for Theo to even talk. About one week before Christmas, he stopped eating. He wanted to eat, and he definitely tried, but it was too uncomfortable. His gums were fire engine red by then. It hurt just to look at them. The diarrhea also got worse. Multiple accidents in the middle of the night and during the day. Fortunately, by day 11 (Christmas eve) the pain seemed to be under control. Finally!
Christmas in the hospital was quiet. Theo woke up, opened his presents in a zombie like morphine fashion, then went back to bed. He slept most of the day, waking up here and there in a daze doing his best to smile and show excitement that Santa had come. The best part about Christmas this year, was the appearance of Theo’s new immune system. On Christmas morning, Theo had brand new cells. 218 neutrophils!! Engraftment! Well, technically, for the doctors to call it engraftment, Theo would need a neutrophil count of at least 200 for three days in a row. Well, close enough. That alone is all we needed to celebrate. The best present we could’ve asked for. What came next, was no present at all. Christmas suddenly went from mellow and merry to a feverish frenzy.
By Christmas evening, fevers and nausea hit Theo hard. He spent the next 24 hours throwing up while the anti-nausea meds played catch up. The fevers and throwing up continued for the next several days. Tylenol lowered his fever temporarily, but two hours later it was up again. Theo was barely sleeping; he was so miserable. Theo’s body was also covered in an angry red rash. The diarrhea? Still super bad. This was a classic case of engraftment syndrome. Theo’s body had accepted the new bone marrow and it was making new cells. Super! But that rapid new cell growth can cause an inflammatory response. Recall that Theo’s insides are practically mush. He has mucositis running through him! Those new cells can’t wait to rush to all the areas of the body that need healing and get straight to work. Similar to cytokine release syndrome, you get an overactive immune response, and that causes fevers. Fevers so high that one night it reached 106.4 Fahrenheit!!! We were terrified. Theo needed more than Tylenol. Engraftment syndrome is treated with steroids. Theo received his first dose of steroids on December 28th. Almost immediately, he felt better. Finally, he could rest comfortably. Sure, he was emotional (steroids do that) but that’s okay! Steroids can also raise your blood pressure. We are so proud of Theo. One afternoon, after Theo’s blood pressure had reached a new high, the nurse approached him with a syringe of blood pressure medicine ready to shove it down his throat. Very forcefully he told her to stop and said to her, “Wait!! Wait!! You haven’t even told me the name of that medicine and why I have to take it!” HA! Good for you, Theo! Way to keep yourself informed. Luis and I are the ones that give him his meds. He prefers it that way.
By December 31st, the doctors wanted Theo to take ALL his meds orally. If we wanted to leave the hospital anytime soon, he had to make the switch back. The steroids had been successful at treating the engraftment syndrome and therefore helping Theo feel better. Theo had been receiving nutrition and his meds through his central line for weeks. Taking pills, something that is usually super easy for Theo when healthy, suddenly seemed impossible. Turns out… it actually was. And that is when my anger started to burn. I wrote furiously about it in my journal. Lots of swearing, lots of capital letters. It had been four days of Theo taking all his meds by mouth. Out of those four days, there was only ONE night that he didn’t vomit while having diarrhea in his pants while taking his pills. That’s 10 pills in the morning and 10 pills at night. It was torture for Theo. His stomach was not ready to handle all the water he needed to get the pills down. “It’s a challenge for all of our patients” one doctor said. NO SHIT! But this can’t be the answer. “Here you go mom, give your child these 20 pills today and hopefully he doesn’t puke them out.” Oh sure! Never mind the diarrhea, the not eating, the feeling like crap. So there I am, pill in hand, hoping and praying he won’t first freak out and then throw it up. Increasing the anti-nausea meds to the maximum dose and frequency helped a little bit, but it was still torture. Most nights Theo falls asleep by 8pm, so I have to wake him up every 30 minutes to give him another pill. Even if we started early in the evening, I was up until midnight trying to get them down. We kept telling ourselves and Theo, “It gets easier every day, tomorrow will be so much better.” If only it had been.
Before things got better, they got worse. By January 4th, Theo was having fevers and his nausea got worse again. Not even the anti-nausea meds seemed to help. We were back to sleepless nights with a stack of throw up bags by the pillow. Just like it was before the steroids. High fevers and rash, but with more nausea. Now what? The doctors all agreed it was most likely graft vs host disease (GVHD). Basically, the same as engraftment syndrome, but since the cells have officially engrafted, it’s called graft vs host. But the doctors need proof! It’s dangerous to give steroids without being 100% certain that it is NOT an infection causing the fevers. Steroids can mask the signs and symptoms of an infection, allowing it to grow worse. On Friday, January 6th, Theo had a scope placed in his stomach and lower intestines to check for signs GVHD. A biopsy was also taken to get a closer look at the cells. They were looking for apoptosis, aka cell death, in the lining of his stomach and intestines. They found mild GVHD and began treatment of steroids right away.
I don’t know about you, but this rollercoaster ride is making me dizzy. Had enough yet? Good, because there’s more!
Theo felt better for five glorious days. And then… you guessed it. Fevers and intense nausea. On the morning of Tuesday, January 10th, Theo spiked a fever and presented with very low blood pressure. All his meds were switched back to IV (again!) So what now? GVHD? Not likely. He was still on steroids, which should be treating that, especially because it was only identified as mild GVHD. Ok, so was it an infection? A fever is a sign of infection. Nope. No sign of infection. There was no bacteria growth in his blood, his viral swab came back negative, the CT scan was normal, and all blood tests for viruses came back negative. It was a complete MYSTERY!!! Other teams got involved. Infectious disease doctors and Gastrointestinal doctors all joined the party. Each with their own theory in mind but no evidence to solve the mystery. A lot of “possible” answers. Although, every doctor was incredibly reassuring that Theo would be ok. Clinically, he looked GREAT! A growing immune system – stronger than expected this far along, no inflammatory markers, normal functioning organs, no signs of stress in the body other than the fevers and nausea. In the end, they decided to add on two more antibiotics (he was already on one) through Theo’s central line. Just in case there was some bacterial infection their eyes were somehow not seeing. It’s called, culture negative bacteremia. It worked! Hooray!! That brings us to TODAY!
Presently, Theo is not throwing up, not having diarrhea, he does not have a fever, he is EATING, he is taking almost all of his meds orally, AND HE’S SMILING. On Monday, January 9th, Theo had a bone marrow aspirate done. The results are incredible. 99% of the bone marrow are donor cells. Only 1% are Theo’s cells. That is a huge success! Really anything over 90% is good, but 99% is remarkable. And not only is there NO leukemia in his bone marrow, but there are no cells with the specific leukemia marker that Theo used to have. I think this means we might be getting out of the hospital sooner than later!
Six weeks is a long time to be in the hospital with your child. It doesn’t feel like reality. This is not my life. That child is not my son. My son is silly, full of energy, loves to play and eat! Who is this boy? Who lays in bed all day, barely able to speak, too weak to walk, no expression, eyes glazed over, and who cries so often, so easily? Theo is unrecognizable inside and out. It is an understatement to call this a hard journey. We already did that, for two years. This is not hard, this is brutal. Trying to stay positive and calm throughout this wild rollercoaster ride, week… after week… after week. The agony has been running through us consistently, forcefully, and stabbing every part of my tender heart. But I am not broken. I have my family and friends. I have Luis and Theo, the best two wise old loving souls as my super glue. Theo says we are like a giant peanut butter and jelly sandwich (my favorite). We are better together. Especially during these long hospital stays. Luis is my lifeboat. Always there when I need him with an answer. The last thing Theo needs is to see his mama and papa freak out or cry. We must choose how to act. How to respond and get solutions! When he sees us steady, confident, and calm. When he sees us put our trust in the doctors, he will follow. Whatever it takes. We give Theo everything we have. Our time, our hearts, and a world of endless possibilities!
Theo has been reborn. He made it to the other side. Isn’t it just incredible? He has a brand new immune system. New strength, new life, a new beginning! All thanks to the brilliant minds of so many doctors, decades of research, and countless volunteers. One in particular: the donor. A complete and total stranger!! And when I say countless volunteers, I mean it. How fortunate we are to live in a place where blood products come so easily. You know why? Volunteers. We would also be lost without all the nurses, physician assistants, and nurse practitioners, who go over and beyond to help Theo through this. They give so much, work so hard, and care SO much. They deserve all the thanks in the world. DONATE BLOOD, PLEASE! The lives of so many children depend on it. VOLUNTEER! It doesn’t take a lot to make a huge difference. You can do so much more than you ever imagined. Give what you can, while you can, and it will come back to you 100 times greater when you are in need. Trust me. I know because we have experienced it firsthand. BE THE MATCH! You can literally save someone’s life by donating your bone marrow. It is so easy to take for granted our health, our status, and our comforts. It is not until the rug gets pulled from under our feet and we are sliding toward the edge of the cliff that we wake up!!
I asked this question before, and I’ll ask it again: Do you live your life like you’ve survived cancer? I ask myself this question so often. Sadly, cancer is all too common these days. How can we live a life without regrets? I don’t believe that it means you have to make dramatic life changes, going through the bucket list, or go jumping out of airplanes. It’s actually a lot simpler than that. I believe, all it takes is a change in perception or a different view. We so easily follow the patterns of negative thinking. For example, it’s January. Gloomy, ugly, rainy, boring January. But is it? It is really that bad? Or are we just in a pattern of saying and therefore believing it is bad? It depends on where you live. It depends on how you see things. How you perceive the world. Maybe January is beautiful in a different way. Have you ever stopped to notice? Believe me, I try. I’m always dreading the dark, cold months of winter in Seattle. But then summer arrives, and it’s beautiful and sunny and bright, I love it even more!! A little bitter, enhances the sweet, like the appreciation of a sunny day after weeks of rain. That makes January wonderful. Try to find something in every day that makes you happy. A smell, a song playing on the radio, a new recipe. Do something for someone else, without them asking. Buy someone a coffee. Dream bigger! Aim higher! Let go of that fear. Spread that joy and then go donate blood (seriously, right now, do it). Stop for a moment and appreciate it. And also… appreciate yourself.
” The real voyage of discovery consists not in seeking new landscapes, but in having new eyes” – Marcel Proust.
Every year for Christmas, I make a big batch of limoncello. This year is the third year I included a poem to go along with the limoncello. Something to make it a little more festive. This year’s poem is dedicated to Theo. It’s titled (no surprise here) NEW BEGINNINGS
If you could go back and start all over again. Would you do anything different? C’mon let’s just pretend. / Would you have saved more money? Tried harder in school? Probably would’ve cut that mullet, they were never that cool. / Would you have danced a little longer? Stayed up really late? Or passed on that last martini? The next morning didn’t feel so great. / Would you have traveled more? Off to distant places? To experience other cultures? To smile at different faces? / Would you have learned another language? Or two or three or four? Gracias. Mi scusi. S’il vous plait. Por favor! / Would you have told that lie? Or said those hurtful things? Anger is an evil beast. Only sadness does it bring. / Would you have spoken up? Let your voice be loud and clear? Maybe you weren’t ready then. Ready to let go of that fear. / Would you have eaten that extra slice of delicious chocolate cake? Oh… my! You ate the whole cake?! Well that explains the tummy ache. / Does it even matter? What we could’ve or should’ve done? Focus on TODAY! Treat it as day number ONE. / If you want a second chance, take it. Here you go. This year we celebrate new beginnings, a second chance to learn and grow. / We welcome Theo’s new life and brilliant rejuvenation, with this batch of limoncello. It’s a joyous celebration! / So the next time you are wondering, what you could or should do. Take a sip of limoncello and remember, today is brand new!!