“Lookout kid, trust your body. You can dance, and you can shake. Things will break, you make mistakes. You lose your friends, again and again. ‘Cause nothing is ever perfect. No one’s ever perfect. Let me say it again, no one’s perfect. A lifetime of skinned knees. And heartbreak comes so easy. But a life without pain would be boring. And if you feel it, it’s fine. I give you everything that’s mine. I give you my heart and my precious time.” Arcade Fire – Unconditional I (Lookout kid)
This song. Every time I hear this song, I am fighting back tears. Tears of pain and joy. Tears of hope and love. When I hear this song, I think of Theo. His still very young life and all the horrible things he has endured. I think of his innocence and fragility and the challenges that await him. I think of his vibrant sweet soul and all the wonders and beauty it will hold. I think of his first day back at school, his first dance, his first love, his fears, his discoveries… his future. Theo has not had an easy start to his life. He has been forced to deal with so much, so young. He has experienced hardship and pain on a level no child should ever know. I desire, with all my heart, for Theo to be happy. To explore and break barriers. To take risks and create. To live and love with passion. To go full speed ahead and not let anyone or anything slow him down. Cancer will not be his crutch. It will only fuel his fire. Theo did not choose this, and nothing can change what has happened, but it has changed him. He has found light in the darkest places. He has flourished through the fight. Thriving where there is only decay. He has discovered his own special power. That is why I know… Theo will spread his wings and soar.
Recovery continues. On Monday, April 24th, (DAY 133) Theo began taking 20mg daily of Disatinib. This is two thirds the dose that he was taking prior, that was making him sick and giving him abdominal cramps. Fingers crossed Theo would tolerate Disatinib at a lower dose. Did it work? Definitely NOT. Theo immediately started having stomach pain, headaches, heavy eyes, and very little energy. He had lost all desire for physical activity and most days had zero appetite. His doctors encouraged us to have Theo continue taking it for a few days to see if his body would adjust. Theo put up with the symptoms for a total of six days. He was grabbing puke bags in the morning, having several bathroom emergencies throughout the day, and was unable to enjoy the one thing he loves the most: food. By Sunday, April 30th, he had had enough. We stopped the Disatinib for good. As soon as we stopped it, Theo felt better. All of the symptoms he was having disappeared and he came back to life. It was obvious that Theo’s body would not tolerate Disatinib, no matter the dose. Theo’s body is completely compromised on Disatinib. He is not himself at all. To us, that is not recovery. It was back to the drawing board to figure out our next plan of action.
Theo was back to feeling like himself again. He had good energy and a big appetite. Perhaps a little too big. You should all know, very well by now, that Theo loves clams. So much so, that on the night of Saturday May 6th, Theo ate three pounds of clams (almost all on his own) for dinner. Food is a celebration, something to get excited about. And boy was Theo excited. He had been looking forward to those clams all week and was ready to savor every bite. Unfortunately, it didn’t end well. It was a spectacular dinner with a very sour ending. Were the clams too rich? Too much for his one-week-post Disatinib stomach to handle? I think so. By 9:30 pm Theo was complaining of being too full to finish his pills. Within minutes he threw up his entire dinner of clams. We thought that was the worst of it, that he was done and feeling relief. Nope! He could not stop throwing up. That’s when I started to panic. But first, let me explain a few things.
On Wednesday, May 3rd, Theo took his last dose of steroids (prednisone). We were thrilled! Finally. It had been four long months. His cheeks were more swollen than a puffer fish and his leg and core muscles were getting weaker by the second. His adrenal glands were probably fast asleep since steroids had been in control for so long. The adrenal glands are responsible for making the hormone, cortisol. Cortisol is needed every day for many body functions like maintaining the energy supply for the body, fluid and electrolyte balance, and maintaining blood sugar levels. Cortisol is also very important in controlling the body’s reaction to stress. Since Theo’s adrenal glands had been inactive for so long, he had to start taking hydrocortisone. It is the medicine most often used to replace cortisol in the body. It takes time for the adrenal glands to start making cortisol on their own after being out of commission for so long. Theo will have to take hydrocortisone for at least one month, maybe longer, to help wake them up. If Theo becomes ill, injured, or has a “stressful change” in his body, then he will need “stress dosing”, which is 10mg of hydrocortisone every eight hours and continued for 24 hours after the stress has resolved. But wait… that’s not it! IF Theo is unable to take a stress dose (because he has repeated vomiting after eating clams!!) then he will need Solu-Cortef (hydrocortisone) by injection. It is very serious. Immediately following the injection, you have to call 911 and be taken to the emergency room. I know, it sounds scary. I was trained at clinic how to prepare the medicine in the syringe and inject it into Theo’s leg, like an EpiPen. I was told that the injection is very rarely used, and they doubt I would ever need it. Well, on the night of May 6th, I was extremely worried that we would be one of those “rare” cases. That I would have to give Theo the injection! Oh heck NO. We needed to do whatever necessary to avoid that.
Now, back to the part when I was panicking. While Luis held the puke bag and comforted Theo, I called the on call BMT doctor. At first, she recommended we wait for him to stop vomiting and then give the stress dose. Ok… but what if he can’t stop?! It was almost 11pm. The last ferry leaving Kingston was at 11:10pm. Theo had been throwing up for 45 minutes and it didn’t look like he was about to stop anytime soon. If we were going to Children’s Hospital, then we needed to get on that ferry! Like I said, we did not want to risk having to give the hydrocortisone injection. We did not want to end up going to the emergency room in Silverdale. No way were we going to let that happen. Then Luis saw blood in Theo’s vomit. That did it. We knew we needed to leave. We packed a bag and raced out the door, barely making the last ferry. Theo was in and out of sleep or focusing on taking deep breaths most of the ferry ride. As soon as we were within a mile of the hospital, Theo said, “I feel much better now”. Oh thank goodness!! But really?? Looks like we could have stayed home after all. Well, it was too late now to turn around. We told the on-call BMT doctor that we were coming and they were expecting Theo in the ED. Here we go. A visit to the ED is always at least five hours if not more. We knew it was going to be a long night. It took almost two hours for the nurses to find a vein and start an IV. TWO HOURS!! They finally got it by using an ultrasound. Theo’s veins are so tiny and difficult to find even on a good day. That night they were tiny AND flat because he was so dehydrated from throwing up. I have so much appreciation for the nurses at Children’s Hospital. Working under so much pressure, sweating as they make the seemingly impossible, somehow possible. It can’t be easy, but they always find a way.
After Theo got some IV fluids the doctors said we could leave. That’s it! Six hours and a sunrise later, we were out of there. Theo’s blood looked good, no sign of infection or anything else unusual. By 6am we were leaving the ED, on our way back home, eager to get whatever little sleep we could catch. The next day, Theo announced he is on a break from eating clams until further notice. I don’t blame him. It happens. The “eyes are bigger than your stomach” scenario. Only Theo doesn’t have a normal functioning healthy digestive system. His had been recently poisoned with Disatinib while still recovering from a toxic overload of radiation and chemotherapy. Add months of multiple, heavy, and continuous antibiotics on top of that and you’re left with ZERO good bacteria. His microbiome is completely wacko, as in NOT GOOD. Hmm, no wonder he got so sick! Lesson learned. From now on we have to take it easy. It’s so wonderful that Theo’s an adventurous eater, but for now, we need to be patient.
For the next three weeks, Theo was chemo free! His stool returned to normal and his energy was bright. Theo’s daily routine of meds and ointments felt easy again. We all felt so much better, but we knew it might not last. Theo’s doctors were discussing the next step in his treatment. The Disatinib did not work. What about Imatinib? They recommended we try Imatinib starting at a low dose for the first month, then increasing to the full dose if Theo is tolerating it well. My gut reaction was to say NO. My heart is tired from seeing Theo getting beat down. But I am not a doctor. I have not done any research on how to cure cancer or how to keep pediatric BMT patients in remission. We trust Theo’s team and the treatment they recommend. They also want the best for Theo. So, Theo started 200mg a day of Imatinib on Monday, May 22nd. Oh please please please work this time!
At first, it wasn’t that bad. It started with early morning abdominal pain that went away after going poop or letting out some gas. Theo said he was okay with that, as long as either mama or papa was around to give him snuggles while he was cramping. As the week continued, the symptoms worsened. The tummy cramps became more frequent, and his stomach became more sensitive. By the second week, Theo was having up to six stools a day with cramping, feeling “icky”, barely eating, and having a hard time finishing his pills because he felt so full. The icing on the cake was on Thursday, June 1st. Theo had leaky diarrhea in bed while napping. He had increased stomach pain throughout the day and several emergency trips to the bathroom. He was so uncomfortable; he couldn’t take it anymore. That day, we called the clinic to tell his doctors that we’d be stopping the Imatinib for good.
Abdominal pain is a beast nobody likes dealing with because there is not always one obvious culprit. Rather, it’s a combination of many things. If Theo’s doctors need to change something, like his medication or a dose, they try to change just ONE thing at a time. That way, they know if that change has any adverse effect. Following the true scientific method. Change only one variable at a time. Unfortunately, it’s not always that easy when it comes to Theo’s treatment. At the same time Theo started taking Imatinib, his Tacrolimus (immunosuppressant drug) also tapered down quite significantly. It has to be taken into consideration if the lower dose of Tacrolimus contributed to Theo’s abdominal pain and symptoms. Maybe? But unlikely. Theo also developed a rash on his legs. Fortunately, it cleared up in just two days after applying steroid ointment. No sweat! If only all problems could have an easy solution like that one. Rashes are bound to happen and will likely continue throughout recovery. Theo’s skin is so dry and sensitive from the intense chemotherapy and radiation. It will take a long time for his skin to completely heal. He needs to be extremely careful in the sun, either covering his skin completely or doing multiple applications of sunscreen head to toe if his skin is exposed. He has severe red dry patches all around his neck and scalp. Hydrocortisone ointment is applied twice a day to the affected areas of his skin and a topical steroid liquid is applied to his scalp twice a day. Of all the hardships Theo has been through, all the crap he has to put up with… this is what he dislikes the most. He loathes it. The feeling of greasy, sticky, oily, ointment on his neck and scalp brings him near to tears every time I apply it. Thank goodness his skin usually responds quickly to topical steroids. Hopefully he will not need it much longer.
I’m so proud of Theo for trying so hard. For putting up with these horrible symptoms for as long as he has. He doesn’t give up. Even while curled up in a ball of pain he says, “I can do this.” When Theo was taking martial arts last year, his teacher, Sifu Rick, spoke to the kids about self-discipline. He gave each kid a card that encourages them to make positive choices and avoid negative ones. To do things that are good for yourself, whether you feel like it or not. That card is hanging up on our refrigerator and every time I see it, I think of how strong Theo is. He knows that the chemotherapy is part of his treatment plan. So even though it makes him feel bad, he tries his hardest to do it anyways. Unfortunately, Theo’s body cannot tolerate Disatinib or Imatinib. Presently, Theo’s doctors are discussing the next step. Is there another chemotherapy option we can try? If Theo cannot tolerate the full does, is there any benefit to giving him the lower dose or is it just causing more damage to his body? Do we just accept that chemotherapy doesn’t work and instead keep a closer watch on his bone marrow to look for early markers of leukemia? We shall see. In the meantime, Theo is going to enjoy NOT taking chemotherapy and have some fun in the sun! While protecting his skin, of course.
Presently, Theo is feeling good. Aside from some lingering tummy cramps in the morning, his energy is on the rise. There’s been a lot of ups and downs while figuring out his chemo plan, which led to many setbacks in his energy and strength. The good news though, is that Theo is moving in the right direction! He is recovering, he is thriving!! By the end of June, he will be done taking his immunosuppressant, Tacrolimus. Do you know what that means?? Theo is cleared to go swimming!! Theo has been waiting ever so patiently to get back in the pool. We are also counting down the days to his birthday, June 17th! It’s going to a be a celebration of the century. Making up for years of missed celebrations. EIGHT YEARS OLD. In my heart and mind though, I still see Theo as my little baby, and he forever will be. Lately, Theo has been asking for more “Papa and Theo days” so he can spend time alone with Luis. Theo has missed being with Luis so much this past year while being at the hospital and living in Seattle. Now they can finally make up for lost time. I love having some time to myself, but I’ll admit, I also get a little jealous. I see how much fun they’re having. The volume and excitement of Theo’s voice goes up to a whole new level. Theo learns something “so cool” or does something so out of this world amazing, like he has entered a different dimension with Luis. I just want to join in! Wait, can I have a “Papa and Mama day”? Luis started taking Theo fishing at the marina dock in Kingston. Oh boy, Theo is hooked (no pun intended)! Now, he wants to go fishing every day. And we will. All over the peninsula this summer. We will be fishing and swimming all day every day until we eventually turn into fish ourselves!
“The charm of fishing is that it is the pursuit of what is elusive but attainable, a perpetual series of occasions for hope.” – John Buchan
Just a friendly reminder to GO DONATE BLOOD TODAY! Your blood will save lives.
Theo was on KING 5 news! You can check it out here: https://www.youtube.com/watch?v=-xNCva_dezE
A Walk Around The Lake 