GOING HOME!!!

Not much to say. Besides the fact that we are GOING HOME TONIGHT!!! Staussen had a great day with no fever and his ANC counts had a big jump so he is no longer neutropenic.

WE ARE SO HAPPY for many reasons :). Thank you so much for everyones love and support!

It's true. There is no place like home.

PICU Trip - Another unplanned hospital admission

What’s it like in a PICU? I know now, because Staussen was in one for the last 48 hours. But first a little update of the past two months:

Since Staussen’s Clostridium difficile hospital admission in March, things have gone relatively smoothly. Chemotherapy appointments took over half the day but we were grateful that Staussen was tolerating the treatment. His Day 29 chemo appointment was delayed a week due to “not making counts.” Some of Staussen’s treatments are something called “count dependent,” which means that his immune fighting cells must be above a certain number in order to receive treatment; if he is “below counts,” then his treatment gets delayed--as was the case with Day 29. We actually returned to the clinic three days later to see if his counts had improved enough to continue treatment. He was still below the minimum number but we had to make a decision to see if it was worth it to pursue treatment (and thereby wipe out his immune system before it was ready) or hold off a few more days (knowing that his leukemia would have a week’s worth “without chemo,” if that makes any sense.) We decided to wait another few days so as not to completely destroy his immune status.

By the following Monday he was ready to continue treatment. It included a lumbar puncture with chemotherapy, a new drug through his port, a new oral drug, and four days of cytarabine--given through a shot into a fatty part of the body. Attached is a video of Staussen waking up from his lumbar puncture. It was hilarious watching it in person.

Auna and I had sought to prepare Staussen to receive the shots by watching a Daniel Tiger episode about receiving an injection. The episode includes a jingle that sings, “When you’re scared, just close your eyes and think of something happy.” That became the pre-shot theme to Staussen’s cytarabine. Later this evening, his preparation was put to the test.

I explained to him that the nurse would give him a shot in his leg. This would be my “training” so I could give the next seven shots to Staussen at home. “Give shot? Close eyes, think happy?” he said to me. What a sweet little boy! We practiced giving a shot to Toothless, his stuffed dragon. Staussen wiped the animal’s leg clean, gave a shot, then placed the bandaid. He even told Toothless to close his eyes. When it was Staussen’s turn, my heart was so touched as he trustingly closed his eyes, pursed his lips, and I assume, tried to think of something happy. His look of concentration changed to an expression of pain and his face flushed as the needle passed into his leg. Once his bandaid was placed, Staussen grabbed onto me and wouldn’t let go. He cried for another 15 seconds, but eventually relaxed. I asked him what he thought of to make him happy. “Daniel Tiger makes me happy!” he said.

We were discharged Tuesday afternoon. Honestly, my initial confidence at giving Staussen a shot at home turned to slight apprehension as I thought about the trust that Staussen had in me as his father. I didn’t want to hurt him, yet I knew that he needed to have the medication. After an internal philosophical debate, I concluded that I could give the shot just as well as any other provider that we could make the experience one where Staussen’s trust in me could be unaffected.

Auna made an awesome makeshift injection out of a syringe and sewing needle for Staussen to use on his stuffed animals. He practiced on almost all of his stuffed toys, from Baymax to Chemoduck. Finally, it was Staussen’s turn again. Of course, he didn’t want to do it, but we got it in without trouble. The next few shots happened with about the same story.

Staussen’s second-to-last shot the following week showed me, once again, the strength of character of this little boy. As I prepared the equipment for the shot at the kitchen table, Staussen ran to the corner of the living room, buried his face in his hands and went prone to the ground, whimpering, “no shot! ayaw shot!” (I don’t want shot!) From my position at the table I gently called for him to come to me, that I knew the shot hurt him and that I recognized that he didn’t want it. Auna explained that he was almost done with the injections. He just had to close his eyes and think of something happy. After saying those things, he stood up, still groaning, walked over to the chair where Auna was sitting, and pulled up his pant leg in preparation for the shot.

What faith. What humility. What strength. He believed our words. He didn’t want to experience it, but he trusted that we would help him through the pain.

No wonder the Lord taught that we must be as little a little child, “submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father” (Mosiah 3:19). This scripture took on new meaning after my experience with Staussen.

Staussen received his last dose of Delayed Intensification chemotherapy last Sunday (May 3rd) and had two weeks to recuperate. It was expected that his blood counts would decrease for the next week-and-a-half or so before they started to rise again.

Staussen was doing well considering the heavy drug load he had taken. Looking at him from a distance you saw a cute, bald, healthy, rambunctious little two-year-old, but it was Auna and I who saw him at his non-peak hours when he crashed with fatigue, usually two or three times a day. His buzzed head displayed mixed patches of hair stubble and glistening spots where hair had completely fallen out.

Monday, May 4th’s visit to the hospital was only for a lab check. Staussen’s hematocrit and hemoglobin were far below normal but did not yet warrant replacement via transfusion. However, his platelets were at 24,000. To put that into perspective, the normal range is 150,000 to 300,000. We were told to return on Thursday for a possible platelet transfusion, since his platelets would most likely trend downward.

On Wednesday night I thought to myself, “it’s funny that when Staussen is not expected to have emergency hospital admissions, he does anyway; and the time when it wouldn’t be a surprise that he gets a neutropenic fever, he doesn’t. I’m not complaining!”

On Thursday morning, my words went out the window.

8:30am, Thursday, May 7:

Staussen didn’t wake up until 8:30am. It was a deviation from his usual 6am rowdiness which often begins with him burying his head into my chest or face telling me to “gising na! Baba!” (Wake up! Downstairs!). Instead, he woke up crying his lungs out. That was also a change from his typical routine where we hear him say, “knock, knock! My Buzz Lightyear! (he means to say, “I’m Buzz Lightyear”) To infinity and beyond!” I picked him up and immediately felt unusual warmth emanating from his body. I brought him to Auna, who checked his temperature: 100.6F. Auna looked at me and said, “I’ll pack some clothes for our admission.” Smart wife.

His temperature was still 100.6F when we arrived at the clinic. Staussen interacted with a volunteer who helped him make crafts. He didn’t want me to leave his side, so we made crafts together. Eventually, he tired out and just wanted me to hold him. The doctor attending to Staussen explained what Auna and I had already expected would happen--Staussen would receive antibiotics through his port and be admitted to the ward. He was also given tylenol to address his fever.

12:30pm:

By the time we settled into our room, Staussen’s temperature had risen to around 101F. He was breathing at an increased rate, too, around the upper 40s per minute. Staussen was so fatigued so he fell asleep watching Monsters University.

7:00pm:

Staussen seemed to improve with the Tylenol, but at around 7pm his body began shaking uncontrollably. His skin felt so warm, as though he had been in the sun all day. I took an unofficial temperature. It read 103.6F. With the fever spike, the doctors determined the need to get peripheral and central line blood cultures. It felt like a repeat of our Utah experience. Flashback emotions washed over me as uncertainty and worry crept into my mind. “Did Auna and I mess up and get the boy sick?” I questioned myself. I snapped back into reality as the nurses searched for a vein in Staussen’s upper extremity. This was not a time for me to ponder my regrets. Staussen knew what was coming as an elastic band was tied around his arm. “No shot! No IV! Owie! Owie!” the boy cried. The nurse just needed to do a quick stick with a butterfly needle (which is theoretically easier to perform than an IV). The nurses couldn’t visualize a vein but they could feel one in his hand. They went for it. I watched Staussen’s face as the nurse searched for blood return. I placed my face close to his and whispered, “malapit na, malapit na,” telling him that they were almost done.

No blood entered the tubing.

The nurse stopped searching and apologized for what happened. I knew it wasn’t her fault. Staussen is a difficult stick. Auna and I requested a PICU nurse to perform the next draw. The PICU nurses, however, were busy with their own patients, so the options were to either have another ward nurse try drawing the blood or have a doctor perform an arterial stick. An arterial stick is done by finding a pulse (often in the wrist) and inserting a needle into the artery (which is deeper than veins). There is more pain involved because of more structures to pass through to get to the vessel, arteries have thicker walls than veins, and they even have more sensation due to nerves.  I didn’t have confidence that another nurse would be able to draw his blood so we opted for the arterial line.

I explained to Staussen what was about to happen. In his sweet, innocent voice he said, “give shot?” I looked into his trusting eyes and said,“Oo, magbibigay sila ng shot sa iyo.” (yes, they will give a shot to you). I told him I would hold his arms. He didn’t resist, though he began shouting, “owie! owie!” even before the needle was placed. The needle was attached to a four-inch-long tube where the opposite end held a syringe attachment which would fill with blood as the artery rhythmically pumped.

It felt like the blood draw took hours. Blood passed into the tube little by little as the slight movements in Staussen’s wrist, combined with the doctor’s subtle hand motions caused the needle to come in and out of the artery. My heart stopped every time the blood paused its movement in the tube. Every time the doctor readjusted the needle, Staussen screamed in pain. He was sweating profusely. His cries of torture broke my heart. His eyes were shut in agony as the 23-gauge needle pierced his wrist, searching for a sweet spot. A thought came into my mind, “Jesus also had his wrists pierced, but not with needles.” Tears welled up in my eyes as my little champion suffered his own pains.

9:00pm:

Although Staussen’s temperature was still elevated, he required a platelet transfusion. He already has so many bruises on his legs due to his low platelet count, and a fever would only contribute to a decrease in his platelet number. It took a couple of hours but it was relatively uneventful.

11:00pm:

The next challenge came in the form of respiratory problems. Staussen was breathing very fast and using accessory muscles to get enough air. The worry about this is that he would tire out and eventually require mechanical assistance to breathe. A rapid response team was called to assess the situation. They recommended starting Staussen on oxygen with a nasal cannula to see if it would help his respiratory rate. Staussen knew exactly what that was (from his experience in Utah), and he covered his nose with both hands and said, “no ilong! No ilong!” (No nose! No nose!) So we started with a mask. It didn’t provide the respiratory assistance the doctors wanted, however, so they wanted it changed to a nasal cannula.

I hesitated on the decision. I wanted to find another way to assist his respirations, if possible. Behind me, I heard the doctors explain to Auna that they would do whatever was necessary to improve his breathing. With the earlier events of Staussen’s suffering still fresh in my mind, I went on the defense for my little boy, assuming that the tone in their voice was saying they would do what they thought was best for the child despite the father’s reluctance. “I want to do what is best for my son, too, but I think that sometimes providers are so willing to do to the next step without considering the patient’s comfort. He’s two years old. Do you know how sticking nasal prongs into his nose would make him feel?” I was debating what would be better for him--a nasal cannula or sleep. His fever was now 104F and rising, which I felt was a main factor affecting his respiratory rate. In the end, we decided to try the nasal prongs even though I didn’t feel like the wall oxygen could provide enough flow anyway to provide enough pressure to assist his lungs.

After the doctors left, I asked Auna if it was obvious that I was annoyed. She smiled and said, “yes, it was obvious, but that’s ok.” For the record, I eventually apologized to them and thanked them for being able to think four steps ahead in the event of a worst case scenario.

Midnight, Friday, May 8:

We kept the nasal cannula on Staussen for about an hour. It didn’t help much. In fact, I felt that it worsened his respiratory rate because he was so aggravated. From the second he put it on to the moment he took it off, he covered his face with both hands and repeated, “no ilong! Ayaw!”

I requested that it be removed. He just needed to get some rest. The boy had gone through so much already. He kept trying to fall asleep but the air blowing into his nose prevented him from relaxing. As I removed the cannula, Staussen said, “walang nasal cannula?” (no more nasal cannula?) then gave a fake chuckle. Oh my sweet boy.

He was so tired and he was soon asleep. His temperature was around 105F by now. Furthermore, a bumpy rash started to appear throughout his face and extremities. The Tylenol wasn’t helping very much. We couldn’t use NSAIDs because of the effect they have on platelet production (he was low, remember?), so it was my job to cool him down with damp cloths. Every time I rotated his forehead rag, I was amazed at how warm it felt. I put the Staussen-warmed-rag on my own skin and it felt like it had been run under a heated faucet. He was burning. The doctors eventually said to hold off on the cooling rags after his temperature dropped to the 104Fs.

Before Auna left the hospital (since Daisy wasn’t allowed to stay overnight), she reminded me that I have Priesthood power to bless Staussen. In the privacy of our little hospital room, with monitors beeping and Staussen’s rapid breathing, I placed my hands on Staussen’s fever-scorched head and provided him a blessing as directed by the Holy Ghost. During those few moments there was a feeling of peace amidst uncertainty.

Auna and Daisy soon left and Staussen and I remained in the room. This whole day Auna had been my strength, helping me focus on the situation at hand. She provided me physical and spiritual support, and now that she was gone my focus faltered.

I sat in silence, staring at Staussen, listening to his rapid breathing. His respiratory rate was in the upper forties and the monitor would occasionally sound whenever the rate reached above 50. As I stroked his buzzed head, my vision blurred as tears obscured my sight. Why this again? He has struggled enough. He doesn’t need this. My usually hopeful and positive attitude turned faithless and cold. It wasn’t that I believed he wouldn’t be healed of his leukemia; it was because I felt that the pain his poor frame was experiencing was unnecessary. I also feared that things could get worse. Doubt and despair filled my mind. Again, I wanted to take away his burden. I wanted to remove his pain. Flashbacks of Utah came into my mind. Sure, this is most likely a viral illness since his ANC was 450. Sure, his previous fungal infection was a rare occurrence.  But his history is not encouraging. “Faith and trust” had been a personal slogan for me throughout this experience, but oh, how difficult it is to say that now.

1:00am:

I finally fell asleep around but had a couple of interruptions over the next two hours as I helped Staussen go back to sleep each time they performed a vitals check or medication administration.

3:00am:

I awoke to a room full of people. A rapid response team was called because Staussen’s respiratory rate was back up to the 60s. They determined that Staussen needed to be sent to the pediatric intensive care unit (PICU) for closer monitoring. Staussen was scared. His eyes were wide open, staring with a puzzled look at the people around him. He could sense that something was wrong. Maybe he could feel his breathing muscles tiring. Maybe it was the faces of the adults surrounding his bed that caused him to lie awake in fear. I released his hand as we passed through a doorway and he let out a cry of terror. He gripped my hand and didn’t let me leave his side as we wheeled his bed through the hallways.

3:30am:

After hooking him up to the monitors in his new room, the respiratory therapist stated that Staussen required high flow nasal cannula with a high flow oxygen machine. I asked if there was any other attachment he could use other than the nasal cannula. He denied any. I asked if there was a face mask, because somewhere in my memory I could remember the acronym HFFM, meaning high-flow face mask. Again, he denied the existence of anything like that. I asked a third time if there was ANYTHING at all other than the nasal cannula that he could use. His answer was the same. Staussen saw me holding the cannula in my hands. He held his hands over his nose and said, “no nasal cannula! Maskara lang! Maskara lang!” (just the mask! just the mask!) I put my face close to his and explained a few times that he needed this to help improve his breathing. After explaining the process of how it would help him, he still covered his nose defiantly. Finally, I told him that I would have to hold down his arms to put it on if he didn’t allow me to do place the cannula. At that, he put his hands to his sides and allowed me to place the tubing around his face.

Staussen’s hands immediately shot back up to his nose after the cannula was placed. There were six liters of oxygen flowing through the two small prongs. Now that could not be comfortable. I told Staussen that he could put his hands by his nose but he was not allowed to remove the cannula or else I would have to hold his hands. He agreed. The video below is a 23-second clip of how the next three hours sounded:

Despite this, he did as he was told and never touched the cannula. In fact, every time it moved out of place because of his head position, he said, “ayusin, dad! Ayusin!” (Fix it, dad! Fix it!) This act of childlike obedience brought me to tears. He hated it in his nose, yet he agreed to the terms that I wouldn’t pin down his arms as long as he didn’t move it from its place. This reminded me  of when the Prophet Joseph Smith underwent leg surgery without brandy (in the early 1800’s) and said that he would hold still as long as his father held him close.

6:30am:

Staussen was so tired, yet he couldn’t fall asleep because of the air flowing through his nose. Furthermore his body had broken out in an itchy rash. I asked for benadryl, hoping for a two-fold effect: treat his rash and help him fall asleep.

7:00am:

He fell asleep as he was saying “ayusin...ayusin...” It wasn’t until he was sleeping that his respiratory rate dropped from the 70s to the 50s. I wondered at how much the nasal cannula was really helping. I sat beside him, his head resting on my arm. I was afraid to move because I didn’t want to wake him. Every time he was slightly aroused from sleep, he returned to saying, “owie! owie!” until he fell asleep again.

10:00am:

He woke up again saying “owie! owie!” The respiratory therapist,  a new one due to the shift change, entered the room to check on Staussen. I told him that Staussen couldn’t stand the nasal cannula but there was nothing we could do. The therapist stated that there is a mask he could use. WHAT?! The therapist retrieved the mask with a special adapter, and we fitted it onto Staussen’s face. He chuckled and said, “hehe, masayang maskara.” (hehe, happy mask.)

Auna and I felt this was a huge answer to prayers. Staussen was able to fall back asleep easily. It was an amazing blessing to have this therapist who was knowledgeable about his equipment come in at the precise time when we needed him.

With all the fluids Staussen received, his face began to look puffy. His eyes were swollen.

3:00pm:

Staussen was watching Monsters University (for probably the 33rd time) when his blood transfusion began. His starting temperature was 101.1F. Over the next two hours, only two-thirds of the blood would be transfused because his temperature rose to 104.4F. The transfusion was stopped. His blood was tested for fear of a hemolytic reaction with the transfused blood. Tests results eventually came back negative for that.

6:00pm:

Temperature reached 106.9F. IV Tylenol wasn’t enough. Placed a cooling blanket over Staussen. Rotated damp cloths over his head. Staussen’s hem/onc doctor researched an uncommonly used NSAID called trisalicylate that may be able to help with his temperature without compromising his platelets (up to this point, NSAIDs were avoided because of Staussen’s platelet condition, which was low despite the platelet transfusion). However, there was a national shortage of the product. Walter Reed and other surrounding hospitals didn’t carry the medicine.

He was given a water pill to release some of the fluid from his body, which helped decrease the puffiness around his face.

10:00pm:

Temp still around 105.5F despite interventions. Respiratory rate still in 50s. Staussen didn’t say much throughout the last few hours except for “Manood...Lion...King” (watch Lion King) and “Manood...Monsters...University.” Each word was separated by a few gasps. His respiratory status was worrisome. Was he going to tire out? His breathing rate must be associated with his fever.  

His nurse came in saying that they were able to retrieve a vial of trisalicylate. It was the very last bottle at the National Institutes of Health. It was about to expire in two weeks. They didn’t even know they had it. Knowing that it was on a national back order, how in the world was it available on the shelf across the street? Furthermore, it wasn’t going to be used for any medical trials. The nurse called it lucky. When she told me how difficult it was to find this vial, tears came to my eyes and I felt the Spirit witness to me that this was a tender mercy from God. He is mindful of me and my family. After I administered the medicine to Staussen, I knelt down to the side of his crib and poured out my thanks to Heavenly Father who heard the pleas and fasting of the many people who love Staussen.

I couldn’t stop the tears of gratitude from flowing. In my despair over the last 48 hours, God reached out and reminded me that His hand is outstretched still. He sent me a gentle reminder that His Son saved mankind not just from sin, but also from anguish, distress, and abandonment, all of which I had felt throughout this time. In these last two days I had asked why God allowed Staussen’s suffering to go on. One much greater than I asked a very similar question as He hung from a cross. Christ truly knew what I was going through. I closed my prayer in gratitude for a loving Father in Heaven and His caring Son, Jesus Christ.

11:00pm-1:00am:

Staussen felt uncomfortable and he asked me to adjust the angle of his bed about 15 times over a period of two hours. I was really tired, but all I wanted to do was make the boy cozy.

4:00am, Saturday, May 9th:

By Staussen’s next dose of the trisalicylate, his fever had decreased to 101.5F. Staussen was sleeping much more comfortably now.

I couldn’t go back to sleep. I decided to read talks from the apostles of God. I read these words from Elder David A. Bednar: “Correct knowledge of and faith in the Lord empower us to hush our fears because Jesus Christ is the only source of enduring peace. He declared, ‘Learn of me, and listen to my words; walk in the meekness of my Spirit, and you shall have peace in me’ (D&C 19:23)” Another apostle, Elder Jeffrey R. Holland, taught, “The Lord...will be a refuge for the oppressed, a refuge in times of trouble...for the needy shall not always be forgotten: the expectation of the poor shall not perish for ever…(Psalms 9: 9,18). Don’t give up, boy. Don’t you quit. You keep walking You keep trying. There is help and happiness ahead--a lot of it...keep your chin up...Trust God and believe in good things to come.”

8:00am:

Staussen has been sleeping peacefully. His temperature stayed around 101F. He was still wearing the high flow oxygen mask, and I had to constantly fix it for him whenever he said, “ayusin, dad!” The infectious disease doctors reported that Staussen’s viral panel came back positive for rhinovirus/enterovirus. That was a likely explanation for his fevers and rash.

3:00pm:

Staussen had recovered enough to be released from the PICU. What an amazing turnaround. He had flirted with respiratory collapse for 48 hours. We returned to the pediatric ward around around 6pm.

6:30pm:

Staussen’s port wouldn’t flush. Something may have happened during transfer from PICU. Staussen has also been very protective of his port, covering it with both hands and saying “owie!” any time he was moved. A blood clot may have formed within the catheter, so a drug called Tissue Plasminogen Activator (tPA) was forced into the device and let sit for two hours.

8:30pm:

The moment of truth arrived. The nurse pulled back on the syringe to draw blood from Staussen’s port. It flowed easily. Thank goodness for tPA!

Sunday, May 10:

Staussen has improved much more. His now has a high-normal temperature, but he is talking and interactive. His ANC is in the 300s (still technically neutropenic), but we hope that it will rise over the next few days.

When we were first admitted to the hospital, the doctor said to plan on at least a week stay; however, his blood counts are better than initially expected, so as long as Staussen stays afebrile we may get to go home within the next couple of days!

8:30pm:
Staussen's temperature increased to 102.5F. Darn it. We'll see what happens next.

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.