CATCH UP!!

So, I (Ronald) wrote this post back in March but didn’t upload it to the blog for some reason. A lot has happened the last two days, but the reading below is what happened to Staussen after starting the Delayed Intensification phase in March. I am currently writing an update from the last two days, so expect another post within the week.

Delayed Intensification, Week 1:

We arrived at Walter Reed early Monday morning (March 9th) for Day 1 of Delayed Intensification. Why is it called Delayed Intensification, you ask? Well, it’s because the chemotherapy drugs this phase are as intense as the induction chemo, and it’s over a 56-day period. Dandy, just dandy.

We started the morning as usual, arriving at the hospital early enough to find parking on the fifth level of the garage (those who have been to Walter Reed know how difficult it is to find parking). Staussen didn’t like getting accessed through his port--he had become so used to drawing labs and receiving medication through his PICC. Nevertheless, he calmed down soon after being accessed and watching some Daniel Tiger. He was NPO (not allowed to eat!) this morning since he was scheduled for a lumbar puncture with intrathecal methotrexate (chemo drug put into the spinal canal to coat the brain and spinal cord). He also needed a cardiac ultrasound to assess his heart function prior to the chemotherapy treatment because one of the new drugs can be very toxic to the heart.

He fell asleep before the procedure began, so it was decided to attempt the cardiac echo first. He stayed asleep through most of it, but he eventually became restless as the cold gel was spread around his chest. The ultrasound tech distracted him by asking Staussen if he could find the “dog” on the ultrasound monitor as the tech increased the volume to hear the blood pumping through the heart. Staussen seemed confused at first as he tried to make out a picture of a dog from the black-and-white screen (which showed the heart). I asked Staussen, “Nakikita mo ba yung aso?” (“Do you see the dog?”) and he responded, “Wala (none)...LION!!” Apparently he couldn’t find a dog, but he could see a lion on the monitor. I asked him if he had a lion in his chest and he confidently responded, “opo!” (“yes!”)

It was confirmed, once again, that there was no lesion on Staussen’s mitral valve and that his heart had very good baseline function.

The lumbar puncture went as planned--Staussen received Versed, which made him laugh at anything and everything, and then he was sedated with Ketamine. The doctor withdrew 5cc of cerebral spinal fluid, replaced it with 5cc of methotrexate, put a bandaid on his back, and then we waited for Staussen to wake up. Below are some videos of him coming out of sedation. Sometimes after sedation he wakes up very angry at the world, and other times he reminds me of a carefree, ravenous lasingero who only cares about one thing: food. This was one of the latter episodes.

Once he was stable enough to leave the sedation unit, we returned to the hem/onc clinic for further chemotherapy. He was given Vincristine and Doxorubicin. The latter drug packs a real punch, affecting the gut, heart, and everything in between.

He also started his week of steroids. Lovely.

We left the clinic with reassurances that although this phase is long, it isn’t as bad as the first month of treatment. As you may conclude after reading the following paragraphs, the definition of “as bad” might have to be explained…

Tuesday morning began with Staussen cleaning out three bowls of Honey Bunches of Oats. Usually he only eats one-and-a-half bowls. Was it steroids kicking in or just a coincidence? I don’t know.

After eating, and to my pleasure, he wanted to play some sport, so we tossed the ol’ pigskin and passed around a soccer ball. We have been working the past few weeks on his instep passing and sole-rolling to avoid the common habit of toe-punching the ball. Before kicking the ball, he often bends over to touch his toe and says, “huwag sa toe!” (“Not the toe!”). Athletics lasted about three minutes, and after that he began acting like he did when he was on steroids before--he wanted to be cuddled, carried, and fed. By the end of the day, he had lost interest in most things around him. He was fussy. He didn’t want to play, laugh, or sing. His eyes looked tired and he just wanted to lie down and sleep.

Wednesday was a continuation of Tuesday night. He didn’t want to do anything but sit on the couch and watch TV; but half of the time he just faced the opposite direction of the TV and stared at the couch.

I brought him to the hospital on Thursday for another dose of chemotherapy. He just wanted to be held--he didn’t want to watch TV or use his ipad/tablet. That was very unusual, even for “Steroid Staussen.” The doctor performed a physical exam and found what could have been the culprit to Staussen’s sudden fussiness--he had a developing right ear infection. Since he was on a chemo phase that would knock out his immune system, it was decided to treat the infection with antibiotics--twice a day for ten days. That meant that for the next week he would get three medications in the morning and four at night on the weekdays, then another morning and evening antibiotic on the weekends. Not too bad for a two year old.

He fussed a bit with every medicine session, but always downed them all without spitting any out. What a little warrior.

On Friday it got a little more interesting. I held Staussen in my arms as I explained to him that Auna and I were going to the temple (the LDS temple located in Kensington, MD). I was dressed in a suit and tie, from both of which I had just cleaned off the baby drool and spit up. Right before I laid Staussen back on the couch, he gagged and spit out some saliva. Auna saw what happened and handed me a bowl in case Staussen threw up. He gagged again, and then vomited over my suit coat and onto the couch. I caught about a quarter of it into the bowl. It could have definitely been worse had Auna not reacted so quickly!

We changed Staussen as my mother cleaned up the couch. He seemed more comfortable after vomiting.

About six hours later he vomited again, and this time there was much more substance. We gave him zofran, supposing that the two vomiting episodes were not coincidence. He also had some loose stools through the day.

Then, while at Costco later that evening, he pooped out of his pants. I didn’t even bring diapers for him...a very well-prepared dad I am! Luckily, however, we had  one of Daisy’s size 2 diapers at hand, so I cleaned him up in the bathroom, squeezed his cute little bottom into the tiny diaper, then wrapped his lower body in Daisy’s blanket. Good thing Auna was prepared with Daisy’s stuff :).

About every one-and-a-half hours after the Costco visit, Staussen had looser and looser stools. I hopes of not being too graphic, the stool was basically brown water with some solid pieces here and there. I slept with him on the couch and changed him each time he had a bowel movement. Thank goodness my mom was here to wash the dirty linen and help me out so that Auna could get some rest.

On Saturday morning, I informed the hem/onc doctor on call of Staussen’s situation. Auna and I decided to continue to observe him through the morning to see if there would be any let up of the diarrhea since he was still drinking a lot of fluid.

Between 10am and 11am, however, he had three large-volume diarrhea episodes. That was the tipping point to take him to Walter Reed. Auna said she had a feeling it would come to this eventually, but I was being the we-can-handle-this-at-home doctor dad. So, we arrived in Bethesda around noon and admitted to the pediatric ward within a few hours. Staussen never had a fever through all this, but he was definitely dehydrated.

While I was gone, the emergency medicine doctor ordered a catheter placed in Staussen to retrieve urine. Auna asked for a urine bag, but he strongly recommended to get a clean catch without contamination, which would be done via catheter. So, Auna very reluctantly agreed. Auna felt like Staussen was tortured. He was sweating profusely, crying hard as they were placing the tube. They had a difficult time doing it. Auna had to hold him tightly while two people held his legs and a third one put in the catheter. They assured Auna that it doesn’t hurt. I (Ronald) think they are a bunch of fools. Have THEY had a catheter placed in them? Well, after struggling, They were finally able to retrieve the urine specimen.

When I heard about this I was very, very upset. What they could have done was place a small plastic bag around the area to catch the urine rather than shove a tube into his bladder. Sure, a urine analysis and culture was proper to retrieve, but doing it in the way they did shows that the doctor didn’t truly think about his patient--only about an illness. Even the people holding his legs held him down while the other nurse was still preparing the tools. Auna asked them to release Staussen until they were officially ready to perform the procedure. Something we have learned is that Staussen (or any kid, for that matter) shouldn’t be pinned down until the equipment is ready, or else he just gets restrained unnecessarily.

By the time we got to the floor, Staussen was in a lot of pain. Each time he urinated he grabbed the front of his diaper, shaking and crying in pain. With every bowel movement he clutched the bed rail and cried out. He then whimpered until the pain from his abdomen subsided.

Stool testing showed that Staussen was positive for a bacteria called Clostridium difficile (C. diff), a germ often associated with antibiotic use that can cause significant diarrhea. While a whole semester can be dedicated to learning about C. diff infection, suffice it to say that it isn’t pleasant to experience. The treatment for it? Stop the offending antibiotic and start an oral one taken four times a day.

Staussen’s electrolytes were out of whack, so a vigorous effort was pursued to replenish his stores. Through Saturday night and into Sunday he continued to have painful, watery bowel movements every one-to-two hours.

It hurt my heart seeing him writhe in pain and whimper for minutes afterwards. He just wanted sleep, but it couldn’t come peacefully. My emotions were a blur inside me. I just wanted to hold him close and give him strength, but I knew that words of consolation couldn’t ease the pain through his body. Not even IV tylenol helped! He had no energy to sit up or stand. Nothing could make him smile. My own body moaned from within, wishing that I could take the pain from this child’s life. People reassure me that he won’t remember the experience, but that doesn’t bring me comfort. I worry about him here and now. It’s hard to have a long-term perspective when difficulty surrounds the moment. Tears blurred my vision as I swept my fingers through his thinning hair. I thought of the pain he must be experiencing and the meager understanding he had of those feelings. I know he is going to improve, but he doesn’t know that.

  

We said a family prayer at Staussen’s bedside. Despite the sadness I felt in my heart, my lips                                quivered as I somehow found words of gratitude for a loving God who sent His son to earth to save us individually--for a savior who knows exactly how to succor his people.  I felt a warmth in my heart that only a caring Heavenly Father can send as confirmation to me that He heard mine and Auna’s petition for our little warrior.

Sunday was spent changing Staussen’s diapers every couple of hours. In between diaper changes his eyes were closed and he didn’t interact much. He continued to experience pain in his front and back sides. He vomited a couple more times. This is how the next few days went. Lola (my mom) just happened to be visiting during this time and she was a huge help with Daisy. She even cooked chicken adobo and Staussen LOVED it! When his appetite returned, he ate a bunch of it, then threw it all up, and then wanted some more. I guess his Filipino genes won out and he just needed Lola’s famous chicken adobo!

By Tuesday, his bowel movements had spaced out to every five hours and his electrolytes had improved. He was feeling much better by Thursday and was even able to get out of his bed to play some bowling. It was so nice to see him walking around. His legs were weak and his knees wobbled a bit as he steadied himself by holding onto his IV pole. But he was smiling. By this time, his bowel movements had spaced out to twice a day.

We were discharged home on Thursday afternoon. It was such a help to have Staussen’s Lola here to help with Daisy.

We are now a week off schedule, but prognosis still looks good. Hopefully there aren’t any more surprises over the next two months.