Detailed Account of Staussen's First Week

(Warning, this is a very long blog post, possibly even a mini novel. But it will give specific details of everything that has happened from Staussen getting sick, to his diagnoses and then the start of Chemo.)

Hello all,

I began writing this little narrative last Thursday and added to it at the end of each day to have a personal record of what I experienced. I didn’t know that I was going to share it with everyone, but Auna insisted that I let others read it; so as you learn about my imperfections during this play-by-play recap, I hope you won’t judge me too harshly. The numbers at the beginning of each paragraph the the time of day the events occurred to help put details in a timeline. For those who can’t read, won’t read, or get too tired while reading novels (like the following narrative), Staussen’s official diagnosis is this: B-cell Acute Lymphoblastic Leukemia.

Monday:

0600--Staussen woke up in bed, complaining of cheek pain (On Sunday, he fell on some toys while playing and bruised up his face). I had been studying when I heard him cry. I usually find him at the inside of his door because he is still learning to open the door by himself. When I found him in bed, I thought, "this is different."

0630--I brought him downstairs to study with me on my lap because he seemed overly fussy when I tried to set him down. I eventually realized that Staussen didn't want to be put down to walk. I thought he was just tired. While on my lap, he began to say, "owie, owie, owie!" and pointed to his left knee. When I asked him to show me where the pain was again, he didn’t point to a specific spot in his legs and he refused that I touch them.

0700--He was super hesitant to walk before I went to work. I encouraged Auna to persuade him to walk throughout the day. The medical student inside of me began to build a differential diagnosis. I thought of the following things: trauma/fracture to the knee/legs that occurred yesterday while playing, infection of the joint (even though I didn't see swelling or erythema), Idiopathic thrombocytopenic purpura (because I found bruising all over his legs and his cheek bruises were pretty bad), thrombocytopenic purpura (I knew that this one could present with a fever and malaise), and as a long shot, acute lymphoblastic leukemia (I only thought this because I had studied about it last Friday). I didn't tell Auna about my thoughts because I didn't want to scare her.

0700-1700--Auna was able to get Staussen to stand, but only with much shaking. He fell to his hands and knees and attempted to crawl to Auna. He had a low-grade fever through this time. He complained of leg pain throughout the day. Auna gave him tylenol. He literally sat/slept on the couch the whole day. He got a lot of Blue's Clues, baby einstein, barney, and grandpa's musical toys that day...

1745--Lidia, Sergey, and Sasha dropped by to see if Staussen wanted to go on a walk with them. We said that Staussen wasn't feeling well, and, in fact, couldn't walk at this time. Lidia asked me what I thought was wrong with him, and I said that it could be a number of things so I am just waiting for more information. After they left, Auna asked me what I thought it was. I spat out all that I was thinking, but I really tried to de-emphasize leukemia. I don't think she noticed that I said it.

1800--We had family home evening. Staussen wasn't his normal, happy self. I always introduce FHE like a boxing announcer, and Staussen usually copies me. Not tonight, though. For our activity we went to the party store because of a 20% off deal, and bought him a dinosaur pinata and a 4 lb bag of candy, all for 20 dollars (it should have been about $25!) We went up and down the pinata aisle showing Staussen the pinatas. He didn't seem to have a preference. In fact, he was more interested in the other toys that were shelved below the pinatas. Because of this, I conveniently chose for him the $15 dollar, cheapest, red dinosaur pinata. Once we gave it to him, he didn't want to let it go. We went to a number of his friends' houses for him to pass out invitations for his birthday party. Staussen loved passing out the invitations, but he would not walk. I even tried tricking him and setting him down. Every time he touched the ground with his foot, he complained of "owie, owie, owie!"

2030--Staussen went to bed easily. He wanted to sleep with his pinata. I noticed some sewing thread on his bed and an empty needle case. I wondered if he was poked by the needles last night or something. I couldn't find any needles in his bed (I later found out that Auna was letting him play with thread in the bed because it was keeping him entertained since he had no interest in moving around). I told Auna that we would wait another day to see how he feels. If he was still not feeling well by Wednesday, we would bring him to the doctor. I went through my differential diagnoses in my mind. It couldn't be trauma, because I couldn't find any pinpoint region of tenderness, and I don't beat him (Daisy can sometimes be rough on him...haha). It seemed like he didn't like his legs extended, so I thought that the problem was associated with bilateral knee pain. I tried to convince myself of appreciable effusion and warmth, but I couldn't persuade myself. I added juvenile rheumatoid arthritis and SLE to my list of possibilities, even though neither really present that way. I kept thinking about the worst possibility, ALL, but I didn't want to convince myself.  

2300--Staussen woke up saying "owie, owie, owie!" and pointing to his legs. Tylenol given. He went back to sleep pretty easily.

Tuesday:

0100-0700--Staussen woke up every 10-15 minutes complaining of pain. I could see that he was hurting so badly. My heart broke and I just held him close beside me. We went downstairs to the couch and we laid down together. He did not want to be moved quickly. He asked for some food, so I gave him a fruit pack and string cheese. He had me string the cheese and place it on my chest. He laughed as I put it on my chest and he quickly gobbled it up. Throughout the night, we tried sleeping in different positions and transferred between his room and downstairs. By about 0500 hours and after getting like 30 minutes of combined sleep during the night, I decided that we would take him to the doctor that day.

0730--At the hospital, I went directly to the pediatrics clinic to ask some doctors what they thought about Staussen's situation and Auna went to the family medicine clinic to set up the appointment. the pediatric doctors suggested that he has a case of toxic synovitis, which isn't as bad as it sounds. A kid with a recent upper respiratory infection may occasionally present with 1-3 days of hip pain and refusal to walk a couple of weeks after an infection. This is due to inflammation of the hip joint. It is benign and resolves spontaneously within a few days. I felt assured that three of the doctors concurred with this diagnosis; however, I still had ALL on my mind. One of the doctors, Dr. Navalkar, looked into my eyes and could read what I was thinking. She said, "Ronald, don't think about that. I know what you're thinking, and don't think about that right now. He is going to be ok. Don't focus on that right now." Auna’s appointment was originally scheduled for 3:40pm, and I returned to the pediatric clinic to work. Auna was debating whether to return home or just stay at the hospital all day until then, because it was so difficult to move Staussen around. Well, a nurse (or somebody) saw her, read her internal debate, and said that she would try to get our boy seen at the first appointment. She was set to see the doctor at 8:30am.

0840-1200--Staussen seen by family medicine doctor.  I was interviewing a patient when a knock on the door came. The doctor I was working with, Dr. Horn, said that Auna was waiting outside the clinic. I quickly stepped outside to hear Staussen and Daisy crying. The family medicine doc, Dr. Kahn, ordered xrays of Staussen's hips down to toes to check for any fractures. She also ordered bloodwork to check on blood levels, kidney function, and liver function. In the xray room, it broke my heart to manipulate Staussen's body into the required positions for the images. He was so uncomfortable as he was forced to lie down on the cold table. In the phlebotomy lab, Staussen was poked twice by the lab tech who fished around for a vein without success for drawing blood. I held Stauss in my lap to help him hold still. I hated doing it, especially since the tech missed. I felt so bad for the kid. We went to pediatric clinic and nurse got vein in single shot. On our way to the clinic, we bought Staussen one of his favorite foods--chips!

1200--Finished labwork and xrays. Returned to family medicine clinic and waited for around 30 minutes for doctor to call us. Dr. Kahn came out with another nurse whom I didn't know, brought us to a small conference room, then discussed that she is required to have us undergo a child abuse investigation due to Staussen's bruising and acute inability to walk. The nurse was the liaison for the hospital child abuse program. Over and over again, Dr. Kahn repeated how I am a "decent guy" and "everybody here knows you and likes you" (I just finished my family medicine rotation there), but that she is required by law to do this. Following protocol meant that we would have to be interviewed by the Family Advocacy Program (FAP), Child Protection Services (CPS), and the police, once we send Staussen to do a "skeletal survey"--which is a bunch of xrays from top of head to tip of toes--to look for evidence of "abuse." Auna and I didn't argue because it would look bad on us and we knew we weren't guilty. We grabbed a quick lunch then went back to radiology for xrays.

1300--skeletal survey performed. Thank goodness that I spoke with the radiologist beforehand and mentioned that Staussen had already received pelvic and lower extremity views, so he only had to receive the upper body. Staussen manipulated into multiple positions. To get a proper view of his chest, I had to sit him in a machine where he straddled a saddle, raised his arms up and compressed the sides so he was tightly held within a tube. An already traumatic day became even worse.

1400--Returned to family medicine clinic. Auna took Daisy to the bathroom to change her diaper as we waited for FAP/CPS/police to call us. After about 30 minutes of waiting, the child abuse nurse came out to talk to me. She reported that she called off the investigation because the skeletal survey returned normal and the blood test was abnormal. In my mind I thought, "well that's good. Auna will be able to make it to the Relief Society activity tonight and I will help babysit the kids of the members who require babysitting." I also thought, "ok, labs returned abnormal. This is most likely toxic synovitis, so there should be an elevation of the white blood cell count, we will receive reassurance, and then get sent home." I then asked the nurse if I could see his numbers. She was hesitant to give them to me in the waiting room, but she did so anyway. They were written down on a yellow sticky note. It showed > / <. I read the numbers again because I didn't believe them. I read it a third time because tears welled up in my eyes. I knew exactly what they meant, and my worse suspicion was confirmed. Acute lymphoblastic Leukemia was now on my mind. Sure, I knew that aplastic anemia could show similar numbers, and even some infections can do the same thing, but I feared the worst possible scenario.

1430--Dr. Kahn met with us briefly. She brought us into a conference room to discuss the numbers of his recent CBC. She said that she would speak with the pediatric hematologist/oncologist at Walter Reed to see what he wanted us to do. He wouldn't be available until about 3:15 or 3:30, so we had time to wait. Tears welled up in my eyes. I didn’t want Auna to see my face. She didn’t know what a hem/onc doctor did. She didn’t recognize the gravity of the numbers. After the doctor left, I sat in my chair, dumbfounded, crying softly, and looking at the side of Auna’s face thinking, “how do I tell her?” She heard me sniffle, and the moment she saw my tear-filled eyes, she immediately began crying, because she knew that if I was emotional, then something was terribly wrong. Life seemed to stop for a moment as I held Staussen close and kissed him on the crown of his head. Auna asked me what was wrong, so I responded that Staussen’s blood levels were dangerously low, and that a few different things could cause that. I told her that I think Staussen has leukemia, but there are are a couple of other things that it could be. We went to the resident area to get on a computer (Patrick Saas from the ward let me use his computer) so I could do some reading on the subject of pancytopenia.  

1530--Met again with Dr. Kahn, who told us that she spoke with Dr. Newton, a pediatric hem/onc doctor at WRNMMC. We were to go to Bethesda (where WRNMMC is located) for Staussen to be admitted to the hospital. This further confirmed my preliminary diagnosis of ALL. Dr. Kahn asked if I needed an ambulance to take Staussen up there, or if I could do it myself. I told her we would drive, and she asked if I would be able to focus on the driving.

1545--Drove home. I was going to call Ryan Orme to assist in a blessing for Stauss, but I remembered he was on a work trip to Philadelphia. I then called Rich Curran, whose phone was answered by Eileen. I didn’t tell her what was going on, only that I was checking if Rich was available to help me out with something. I told her not to worry about it. I called my presidency, but neither Ryan Taylor or Dan Burner answered. I even called my home teachers, Richard Ferrell and Trevor Feigleson, but they were at work. After all those unsuccessful attempts, Rich called back from work. I explained the situation to him and he said he would leave work a little early to assist me in the blessing. When we got home, Staussen wanted to sit with his dinosaur pinata and watch blues clues. We packed up some stuff, only expecting a couple of days of inpatient stay. Rich came over at 1630. I couldn’t speak very well without getting emotional. We proceeded to give a blessing. I don’t remember much, but I do remember saying that I bless his marrow and his bones to function properly again. I didn’t mean to say it, but it came out and I didn’t stop it. Oh, how grateful I am to feel worthy to provide that sacred blessing. As Rich was leaving, he asked if I would like a blessing. I didn’t even think of receiving one until he mentioned it. I gladly accepted, and he proceeded with the blessing. I remember feeling emotional, but also calm. I could feel the Savior’s love. I am so grateful for such a good friend who I could easily call upon for help.

1700--The drive was rainy and dreary, which, I thought to myself, kind of matched my mood. Auna was busy updating parents on the situation. Staussen was saying “owie” and pointing to his feet. At least Daisy wasn’t crying. I reached back and held Auna’s hand as best I could. We realized it was a huge blessing and tender mercy that Auna was able to get the early appointment. We weren’t crying anymore. I just wanted to get out of the I-495 traffic. My mind was blank. I do remember thinking one thing: “Please don’t take him away from me, God.” I got teary-eyed every time that thought came.

1830--Met Dr. Gianfurante (Dr. “G”), who is a 1st year pediatric hem/onc fellow, and Dub, the 4th year medical student. We spoke in a small conference room about what the initial plan would be. I really like Dr. G. He is quiet, but sensitive to feelings. He quickly sought to learn our understanding of the situation. The layout of the next few days was the following: bone marrow biopsy on Wednesday, flow cytometry results Thursday, port placement Friday with chemotherapy beginning that afternoon. Although the diagnosis had not officially been made, Auna and I approached his condition as leukemia.

2000--Met pediatric night float team. Greg Lause, my classmate, was part of the inpatient team who was in charge of us. Bishop Payne arrived at about 2100 to give us strength and support. Auna and I are so grateful for his love, support, and guidance. He bought us dinner. His spiritual strength in the room was exactly what I needed as I experienced this trial, the most difficult period of uncertainty and pain in my life. He waited in the room while Auna and I went with Staussen to the treatment room to receive an IV. The pediatric intern gave it a shot. I initially hesitated to let him do it because he probably didn’t have much experience giving IVs to children, but I knew that the only way to become competent at placing IVs is by performing them, so I allowed him to do it on Staussen. The first IV was in his right hand. There was some digging, but he got it...sort of. It came out partly but it seemed to flush ok. It wasn’t placed well enough to draw blood from it, though, so he needed another site. The left hand was next. Failed. Staussen was crying and doing all he could to get out of our arms; however, he wasn’t kicking around too hard because his legs still hurt. I placed my body close to his and whispered in his ear to “magpalakas” and “be brave, anak. Kaya mo ‘to.” I told him that he needed an IV, that what they were doing was going to help him. However, as I said that, I realized that what they were doing was NOT helping him. The doc then tried a left wrist arterial stick. He fished for the vessel. Staussen was screaming in pain. There were moments when Staussen would stop crying and look in my eyes, and I hoped with all my heart that the vessel was penetrated properly, but then he would start crying again as the doctor poked around his wrist. The only thing he managed to do was inflict pain on my child. I had enough. “He better not get a hematoma,” I thought. In calm frustration, or more like anger, I looked up from my poor little Staussen to look at the healthcare team and said, “enough. I am all up for ‘learning by doing,’ but I’ve seen enough. This isn’t target practice on my son. Get the PICU nurse.” Looking back, maybe it wasn’t so calm. I don’t remember. I held Staussen close to my body as we returned to our room where Bishop was waiting. Staussen’s eyes were closed and he was still--all the crying and pain sucked what little strength he had.

2300--The PICU nurse came up to the treatment room to perform an arterial stick on Staussen. Initial labs needed to be performed to get Staussen’s baseline. I mean, Stauss is undoubtedly a hard stick as a 23-month old. Of course there are times when a vein is just super difficult to catch; but this is my son and I want the best care for him, like any other good father would want. The nurse was able to draw enough blood for the tumor lysis labs, but not for the CBC or CMP. There may possibly have been enough for the blood smear, but results were pending. We returned to the room to help Staussen get settled, though we didn’t have the heart to have him sleep by himself. During all this, we learned that it is against hospital regulation to have infants (like Daisy) sleep over, and only one parent is allowed to sleep in the room overnight. We talked to enough people that the charge nurse said it was fine to have us all sleep at the hospital tonight, but we would have to work something out the next night. I had Auna hold our precious son so I could read up on ALL. I wasn’t tired. I wanted to study. I wanted to learn all about leukemia. I wanted to be an expert by the time we had to discuss chemotherapy. I read through Robbins and Harrisons, two of the “Bible books” of medicine. By the time everything was settled it was about midnight on Wednesday morning. I had Staussen in my arms and we slept on the recliner. I just held the boy close and kissed him on his head as I contemplated the events of the day. It seemed surreal to have so many events occur within a single day. Staussen seemed like such a normal 23-month-old only 48 hours ago, and now he may be dead within a few years. Of course my mind was thinking about the worst possible outcome at one in the morning.

Wednesday:

0030--Vitals drawn again. Staussen is afraid of anyone touching him other than Auna or me. The instruments that he used to love me using on him were now, in his mind, tools of pain, and he didn’t want anything to do with people touching his IV, placing a blood pressure cuff, or even the SpO2 monitor. As exhausted as I should be feeling, I was alert and ready to go at the drop of a pin. I wanted to do anything, everything for Staussen. I wanted Auna to rest. I saw on her face how much she hurt whenever Staussen cried out. I wanted her to find some comfort, at least in sleep. Blessedly, Daisy was asleep for most of the activity of the night. Every 30 minutes, the nurse checked the IV in Stauss’s hand to make sure it hadn’t infiltrated. It was such a shady stick that I didn’t feel very confident in it.

0300--sleeping was super interrupted. I never felt like I fully fell asleep because my mind was racing and people were in and out of the room checking on Staussen. What my mind was thinking about I cannot say, because it was just a bunch of mumbo jumbo in there. There was still so much more that I wanted to read.

0315--I guess I dozed off for a few minutes as I thought about leukemia. Staussen felt a little wet, so I checked the sheets that were over Staussen and I, and they were damp. I took a flashlight to his IV and saw that blood had leaked from the site. “Gosh darn it” I told myself, “Now we have to do another stick this morning before pediatric sedation comes in.” I called the nurse and the corpsman came in to take a look at it. He felt around the IV, which woke up Staussen, who then yanked his arm away from the guy. The corpsman had the IV catheter in his hand, which had come completely out when Staussen moved his arm. It was already a goner, anyway. The dorsal aspect of Staussen’s hand was now bleeding, and I think the corpsman was in shock because he just stood there, saying that the line had come out...obviously...I ordered him to grab me some 2x2 gauze so I could apply pressure on the wound. It was then that I noticed an older gentleman in jeans, a polo, and glasses. When the corpsman was gone, the man introduced himself as the pediatric hem/onc attending doctor, Dr. Sterring, “pronounced the same way as the action you use in cooking,” and that he wanted to take a look at Staussen’s blood smear himself, since the pathologist wouldn’t be in the hospital to look at it until later in the morning. My heart was touched when I realized that it was only 3:30 in the morning and that this man had left his home in order to take care of my son. He immediately became one of my favorite doctors, ever.

0400--Staussen was taken back to the treatment room for another IV to be placed. I told Auna to stay in the room and I would handle the boy so that she wouldn’t see him suffer. It reminded me of the interaction between Joseph Smith and his mother just prior to his surgery as a child. I’m sure that if Staussen was old enough and could vocalize his feelings, he wouldn’t want Auna there because he wouldn’t want her to see him suffering in pain. The charge nurse was the one who would perform the IV. In short, she missed the stick in his right arm. I began to feel my blood warm up, but I didn’t want to get upset and the nurse feel nervous. I asked her, “look, let’s get an ultrasound and perform this under imaging.” Luckily, she was trained in IV ultrasounds. Stauss and I returned to the room to wait for the ultrasound, and I told Auna that it didn’t go well. She was sad and upset that it wasn’t working. I reassured her that we would get it next time with the ultrasound, we just had to wait for them to grab the machine. Daisy was still asleep. I wonder what Auna was thinking through this time as she heard Staussen crying through the thick wooden doors. As I recall this night with closed eyes I can see our little boy, wearing only a diaper and partially covered with a hospital blanket, squirming to get out of everybody’s grasp. He kept saying “Mommy! Daddy! Owie! Owie! Owie!” He was always inconsolable. Of course he was; he had no idea why he needed to be poked with sharp objects. I had told him that it was good for him, that the IV would help him; though in my mind I was thinking, “Of course this isn’t helping him. They aren’t helping him by shooting his veins and missing!”

0430--Back in treatment room for IV ultrasound.  I was confident this was going to work. The nurse began the process as I observed and held Staussen with my whole body onto the table. “Daddy, no! Owie, owie, owie!” were his cries. I said a prayer that she would get it this time. I even crossed my fingers, as though that simple action would help her reach the vein. I started at the chamber of the catheter, hoping to see the flash of blood. Suddenly, it came, but only momentarily, and I thought, “hm, that’s weird. The chamber is only halfway filled.” I assumed that the nurse knew what she was doing, because she placed the tegaderm patch and taped down the IV. She then attempted to draw blood...but couldn’t...and I was done. Enough was enough. I had watched, and even assisted, in the torture of this innocent child. The words of Rich’s blessing came to pass, that I “would be able to have a clear mind and make decisions with clarity,” as I went into medical mode. I told the medic to open the IV kit, four wipes, tegaderm patch, ready the tape, syringes for the blood draw. I told the nurse that I would be in charge of the probe, beginning in a cross-sectional view, then move to longitudinal view when we place the IV so we can visualize the needle going into the lumen of the vessel. She could place the catheter itself, but I would tell her exactly what to do. We proceeded with the plan and performed the stick. Nailed it. However, it was only a temporary solution because it was 24-gauge needle, and we needed something wider for longer term use. It was what we needed at the time, though, to infuse the antibiotics and draw the necessary labs. I felt so grateful that I had been trained at school to perform IV ultrasounds. After completing the IV, I continued to read my books as Staussen, Auna, and Daisy were asleep.

0900--Began paperwork for the bone marrow biopsy. Dr. Sterring said that the smear sample was difficult to visualize, but the abnormal cells he found looked like lymphoblasts. I questioned him further, because I personally, and even diagnostically, needed to know if it was ALL or AML. He said, “If you’re asking if I saw Auer rods, I didn’t.” That is exactly what I was looking for him to say. I said a private “thank you” to Heavenly Father after hearing the news. I told Auna what it meant, though it still didn’t really mean much to her as it did to a medical student.

0915--Ms. Naomi, the peds anesthesia NP was in charge of us. She was very bubbly. She was so good with Staussen and Daisy. She gave Staussen three little stuffed dinosaur animals. She played with him before the IV placement and biopsy. She calls Daisy “her suga.” They removed Staussen’s IV prior to the procedure. In order to sedate him, they gave him a benzodiazepine, versed (Midazolam), which works on the same receptors as alcohol...I wasn’t sure if it was working because Staussen was just so tired after having slept so poorly the night previous...so 10 minutes after Staussen took the versed I asked him to give me “up here tayo” high five. He went about halfway in the action, stopped, the gave me this super fake chuckle. I then asked him to give me “suntok,” which he also performed only halfway, then chuckled to himself. He started talking up a storm about something that Auna and I couldn’t understand, then pretended to fall off of Auna’s lap on either side. Haha, Auna and I realized that the medication was working. Staussen was ready for nitrous oxide (laughing gas). Auna held him as the mask was placed over his mouth and nose. Staussen didn’t fight it. He fell asleep easily. The IV was placed in his right foot by Ms. Naomi, labs were drawn and he was typed and crossed for platelet transfusion. We had to wait for those results to return before the biopsy was performed. It was so, so, so nice that the kid was asleep when the IV was placed. TONS different than earlier in the day when his torture sessions occurred.

1100--In room for bone marrow biopsy. Stauss asleep. I wasn’t worried at all. They began with his left hip. No aspirate obtained. That happens in 30% of children, theorized to be due to a huge amount of leukemic cells overwhelming the bone marrow that had turned the blood to a more viscous substance. Bone marrow biopsy performed without complications. Tried retrieving aspirate from right hip, but still none obtained. They retrieved what they needed with the biopsy, though, but it meant that Staussen wouldn’t be able to participate in the worldwide study of leukemia. I felt so, so, so grateful to all the children and parents who enrolled their children in the study. Because of them, the results of leukemia treatment are astoundingly positive. We wanted Staussen to be enrolled in it to “give back” to those who had gone before him, but we will now have to find a way to pay it forward.

1300--Staussen resting. Auna resting. I returned to reading about ALL. Rest of day reserved for recovery from biopsy. Thank goodness for IV tylenol...too bad that could only use it once. By this time, it was confirmed that Stauss had leukemia, we just didn’t know the exact type. We hoped for the flow cytometry results to return today.

1400--I watched Staussen breath calmly and comfortably as he slept. I kissed his head. I love him so much. It was still unbelievable to me that just three days ago he was walking and running around. I visualized him standing on the pew at church, then seeing Lucas, then jumping up and down in front of him excitedly. Now our boy couldn’t even walk, let alone stand.

1600--We got an IV set and a doctor kit from the play room to do some play therapy with Staussen. He liked playing doctor! Maybe he will follow his old man into medicine one day! He practiced placing the IV in a little doll. Maryl’s idea was to have a sign to show him whenever a person entered the room to do something that might be uncomfortable, and another sign to show for when a nurse/doctor was going to something non-invasive, like blood pressure or auscultation. Before this whole experience, Staussen LOVED being checked out by my using my stethoscope, ophthalmoscope, and otoscope, but now every time somebody other than Auna or I got near him he would say “owie! owie! owie!” The play therapy seemed to help Staussen a little bit. He also became Daisy’s doctor and took her temperature, listened to her heart, and put the otoscope over her eyeball. Haha. What a cute boy.

1800--Greg Lause brought some food for dinner. What a great guy. He has taken care of us well.

2300--Auna and Daisy went to Shalayne’s house to sleep. It was a boys’ night out at the hospital! Once everything was settled, Staussen was asleep, and the room organized, I began to ponder a bit about the happenings of the week. I began to wonder about the “why?” of all this. I began to feel a little down and even upset that Staussen had to go through all this stuff. Oh how I wished it was me that was suffering from leukemia. This was finally a time to ponder a bit on the situation, and I felt upset about it. To attempt a distraction, I decided to check the messages on my phone. I saw one from Kim Dover. She extended her family’s love and support, and directed me to a youtube clip that she loves. I watched it. It is one that Russell showed me before his mission that has always stuck with me. It has been a long time since I watched it, and it was awesome. Quotes like, “The covenant with God to which you are true enables you to become enlightened by Him, and nothing is impossible for you.” “When you are physically sick,tired, or in despair, steer your thoughts away from yourself and direct them, in gratitude and love, toward God.” “In your life there have to be challenges. They will either bring you closer to God and therefore make you stronger, or they can destroy you. But you make the decision of which road you take.”  It brought tears to my eyes as I listened. They were great reminders of what I must do to find joy in this journey. I felt the Holy Ghost testify to me that God had purposefully helped me study about ALL last Friday night so that I would be thinking about it come Monday. He directed my studying to be focused on the topic I needed to worry about prior to Staussen’s diagnosis. To Him, I am most grateful. I am grateful for my Savior. I thought about Dad’s comment about our Heavenly Father watching his Son, the Savior of mankind, suffer with nails piercing his hands and his feet and agonizing on the cross. No doubt, Staussen was thinking in his own way, “My father, my father, why hast thou forsaken me?” throughout this process. Christ felt not only the pain I feel, but what Staussen has experienced. I’m so grateful for the Savior.

Thursday:

0400--Night intermixed with vitals and awakening. I was up by four, but I had a good two hours straight of sleep! I then proceeded to write the events of the week.

0700--Today is just about active waiting. We had a preliminary diagnosis of B-cell ALL, but the doctor didn’t want to say it officially until the flow cytometry returned. I spent more time studying about leukemia.

1630--Ryan Orme dropped by on his way home from Philadelphia. What an amazing guy. He gave Staussen a hippo toy (which he loves), an awesome helicopter (Staussen’s first toy!), and a coloring book with crayons. Such a generous guy. I became teary eyed as he shared the love from the ward. We talked about Staussen and a number of other things. I am so grateful for his friendship. A couple of weeks ago I was blessed with the opportunity to help him strengthen his testimony. Now, he is strengthening me in my time of need.

1715--Dr. Sterring came in to discuss the flow cytometry results. He confirmed Staussen’s cancer was B-cell ALL. I was happy to hear it. If he had to have ALL, we would want him to have B-cell. He didn’t know the exact CD markers because he came straight to the room once the pathologist confirmed the results. He confirmed that Staussen was considered average risk due to his age and low WBC count, but we still needed to wait on further analyses--MLL translocation, Philadelphia chromosome, response to therapy. Dr. Sterring has been awesome with providing an objective assessment, because it has allowed me to make conclusions on my own as well as look at Staussen’s condition through precise eyes. I thanked him for his objectiveness, but I also wanted to hear a subjective assessment. I requested one, and he chuckled and said, “I’ve tried really hard to be objective!” I wanted to know how Staussen seems compared to other leukemic patients. Well, he said that Staussen doesn’t look like most of the kids he treats. Staussen isn’t lethargic. He is active and alert. Most kids he treats have had an uncontrollable fever for over a week and then pancytopenia is incidentally found on CBC. “How often does inability to walk/weight bear present as the initial symptom of ALL?” was one of my questions. “Not often. It’s usually only on retrospective analysis that the parents realize that the child was complaining of body aches a few weeks prior to admission. I attribute your attention to detail and awareness of his situation to your good training at USUHS.” At that moment, I felt the Spirit testify to me that Staussen’s initial presentation of bone pain and inability to walk was God’s doing. He made sure that the symptom was severe enough that I wouldn’t chalk it up to the flu or something else less severe. He has His hand in this thing. He is watching out for little Stauss. These experiences have already strengthened my testimony in the Savior and His plan. I don’t believe that He gave this illness to Staussen. I don’’t believe he would be so cruel as to do something like that. I do believe, however, that he prepared us in the pre-mortal life to address these types of situations by telling us about a certain Savior, a Redeemer, the Advocate, the Great Physician, upon whom we could truly rely and from whom we can gain strength beyond our own. Auna and I have talked numerous times about the strength that we have received from everyone’s fasting and prayers. From Monday night to Thursday I probably had no more than 5 hours of sleep, yet I still felt alert, at least most of the time. I needed to be alert, and Heavenly Father helped me do it.

1900--Bishop Payne came over. He is such an amazing man. He has helped us so much through this difficult time. He has given us a bunch of food, including corn dogs and french fries! His support strengthens Auna and me. He left us with a prayer. Another classmate of mine, Sara Wilson also dropped by. She is on the general surgery team who was assigned to take care of Staussen. She gave Staussen a bunch of toys--a blanket, hinge board, and coloring tool. She is so nice, sweet, and supportive!

1930--Surgeon Rothberg came in to tell us that we were the first case of the morning. Awesome. As I pondered on our “good fortune,” I can look back and see the hand of God playing a role in my family’s life. Even back to the fact that we were accepted to the military medical school. When Auna first learned that I wanted to do military medicine back in 2010, she did not like the idea. She came out with me to the interview at USUHS in 2012, and she felt a strong impression that is where we needed to go. Had we not been military, we would be facing a huge financial burden for Staussen’s healthcare. I am so grateful to be a part of Army. Furthermore, the school curriculum was revised in the class ahead of me that enables me to focus on my family at this time while not having to be pushed back to the Class of 2017. In probably any other school or curriculum, the opportunity to withdraw from school for a few months would cause major problems in the future, but not in my case. These thoughts inspire me to become the best doctor I can in order to help those around me.

2200--Shalayne took Daisy to her house since Staussen’s surgery would be the next morning for placement of a portacath (or broviac catheter). Auna and I finally had some time to be together and talk for a bit about the whole experience...however, we were both so tired! We said prayers and had an uneventful night.

Friday:

0600--Prepping for Staussen’s surgery. I looked at peaceful little Staussen in his bed, who did not realize what was happening to him. I thought of what Dr. Sterring said last night: that the worse of the leukemia has hit Staussen, and the next three years he will be trying to overcome the effects of the chemotherapy. With the reality of the diagnosis and the difficulty he will experience with the medications, I broke down in tears and held Auna tightly. My little man, my bud, would need to get pumped up with meds for the next three years. Auna reminded me to move forward with faith, the exact reminder I needed.

0630--In the Post Anesthesia Care Unit. I played peek-a-boo with Staussen while waiting for the informed consent papers prior to surgery. I had Staussen practice using the grown up blood pressure cuff on me. I chose where to place it on my body and he would put it on my arm. It was fun. We decided that Auna would accompany Staussen to the OR to be with him until he knocks out. The doc gave him IV versed while I was holding him, then I transferred him to Auna. About 10 seconds after getting the medication, he started to giggle very loudly for no reason. He started pointing at stuff around him and talking up a storm. “He would be a funny drunk guy” was the first thought that popped into my head.

0745--Surgery started. For the type of central line, it depended on what Dr. Duke (who also did Staussen’s hernia surgery as a two-week old!) found in the operating room. He felt that Staussen might still be too small or not have sufficient chubbs to place the buried catheter. We hoped for the portacath, but a broviac would be used if the port was unable to be placed. Also while knocked out in the OR, Staussen would receive a lumbar puncture to remove 5cc of CSF, then replace it with cytarabine for CNS prophylaxis against leukemia. The sample would immediately be sent to the pathologist to determine any CNS involvement.

0945--Both procedures went well, and Staussen was returned to us in a daze. He was just waking up from surgery. He kind of reminded me of me when I woke up from knee surgery. He was talking to Auna and I, but I didn’t understand what he was saying. I tried asking him questions, but he was too tired to answer them. I asked him some open ended questions and he responded with a tired, “no!” We gave him ice He loved eating it, except when it fell out of his cup. He got upset that the ice had fallen and when it touched his skin. Auna left to feed Daisy, so it was just Staussen and I in the PACU until he received an xray to ensure proper placement of the port and he was cleared by anesthesia. He did not like the xray machine. We spent the time playing games, singing songs, blowing up latex gloves and drawing on them. We sang, “the zombies on the bus” and people thought it was hilarious. Staussen slept for most of the afternoon. He watched a lot of Lion King and Finding Nemo. It was really nice that medications and blood draws could be done through his port.

1400--Ellen Bauers, the on-call social worker, got us a 5-night stay at the local Marriott through a lady named Diane Shoemaker, who in charge of the Yellow Ribbon Fund, an organization in charge of taking care of OIF/OEF families in hospital-like situations like ours. I called her up to thank her for her generosity. She seemed to like me, and said that she expects a call for me on Tuesday to see if we need some more help. What a huge blessing to have this off our shoulders for a few days! It also shows how showing a little bit of gratitude goes a long way.

1700--It took the doctors a while to come talk to us about the results of the CSF. Dr. G finally came in the early evening. He said that a single, normal WBC was found (which can be a normal finding in the CSF), but that put Staussen at a stage 2 of CNS involvement (meaning WBC found, but no active CNS involvement). We discussed the boy’s chemotherapy over the next three-and-a-half years in general, then focused on the next 28 days, which is called “induction therapy.” He would be on three drugs during induction: pegasparaginase, vincristine, and dexamethasone. The side effects could be numerous. I made sure to spend some time beforehand to read about long-term side effects of the drugs and how to prevent/address them in Staussen, if possible. For example, I read that fine motor movements seem to be diminished in ALL survivors; therefore, I thought that we could help Staussen practice threading strings/shoelaces through buttons/holes in boards to assist with this potential long-term side effect. We will see how it goes.

2030--He had his first dose of vincristine and dexamethasone tonight. I tried just giving the oral dexamethasone directly from the syringe...it didn’t work...he spat out about half of the dex. Darn. I didn’t even try giving him Tylenol. He was so tired that he didn’t complain of pain overnight. I realized Auna and I would have to try another way to administer his oral meds in the morning. Auna slept at the hotel with Daisy.

Saturday:

0400--I woke up when they did vitals on Staussen. I wrote in this journal and read scriptures. A thought came to my mind as I was pondering this whole “curveball.” When Auna played the crazy April Fool’s joke on me in April 2011, I remember thinking to myself: my child is going to have some critical illness. I need to be prepared for it. I thought that because as I listened to General Conference that April fool’s weekend, there were at least two talks that shared stories about children with some sort of illness. Whether that was a foreshadowing of things to come, or some outrageous thought of a husband-out-of-his-mind that his soccer-playing wife would lose a scholarship for being pregnant, I don’t know.

0630--I ordered Staussen a cinnamon roll, bacon, and pancakes for his breakfast. I even had the docs wear some party hats when they came into the room for morning rounds. For some reason, Staussen was super shy. He didn’t even want to wear a party hat! He was totally fine stuffing the cinnamon roll in his face, though, while everybody was standing around watching him. After rounds, I checked to see if Staussen would use his legs. He was able to weight bear a little, but not much.

1200--Dad arrived. Searched everywhere for a lightsaber to gift to Staussen. Dad made a comment to me from which I learned a lot. He talked about the temple blessings, and one of the promises made to us. He quoted Proverbs 3:8, saying that the promise of “health to thy navel, and marrow to thy bones” was not only for the temple-goer, but to that person’s posterity. Those blessings began with my convert grandfather, continued to my convert father, promised to me, and are extended to Staussen. The health of my marrow is bestowed upon him. This blessing means so much more to me now that it did just one week ago.

1500--Returned to the hospital for Staussen’s friend party. I didn’t even really know it was happening because I had been so caught up in other things. I mean, we had planned on throwing a birthday party for Staussen, and had even begun handing out invitations to some people for his birthday on Saturday, but we had to change plans due to his illness. I walked into the room to see gifts all over the place, brought up by numerous ward members. Tears came to my eyes as I could see physical evidence of the love that people have for Staussen. I could feel the love of our ward. I was completely overwhelmed by feelings of gratitude for these wonderful people who we only met a few months ago. I was speechless. I couldn’t speak. So much has been done for us. No words could properly express my gratitude and how I felt at that moment. I hope that one day I will be able to share my thanks properly to those who have given so much love and support. Auna and I will definitely “pay it forward” as we meet people along the way who are in need of assistance.

1530--Staussen initially didn’t want to wear his minion costume. He was finally persuaded after telling him that he needed to wear it in order to hit his pinata. Staussen didn’t want to put his mask on. I finally gave up because I felt that the mask’s purpose was more to keep sick children away from him than to protect him from random pathogens, and all the sick kids were with Regine Orme, haha. How nice of her! Staussen acted shy when he first got out into the courtyard and saw his friends. He tried to get out of his stroller, but couldn’t due to his weak legs. He loved hitting the pinata. He was sitting in his stroller and hitting it. Haha, his hits weren’t super effective, but he felt pretty good about them. He then gave the bat to Sasha, got out of his stroller, and pointed to his stroller while looking at Sasha, indicating that he wanted her to sit down there. He was so cute!! I was overwhelmed, once again, by the gratitude I felt for the people there and the unseen individuals and families who have done so much to help us thus far. Staussen was so happy, and it made me happy. Also, he was so excited about the whole thing that he began walking again! Auna and I felt like we were back in August 2013 when Staussen took his first steps. We were cheering him on, clapping loudly, encouraging him to keep going. He seemed very unsure of his footing as he staggered around like an old man attached to his oxygen tank, though this was a young kid attached to an IV pole. He eventually became so sure of his footing that we had to slow him down from getting yanked backwards by the IV as he ran around with his friends! We tried taking a kid picture with all his friends. He sat by Cassamira, and I left him there so pictures could be taken. He was smiling and laughing, and in his enjoyment, he threw himself backwards into the plants! Haha, it seemed to catch him unawares, too, because he couldn’t bring himself back up without help. I picked him up and he didn’t want to be put back down. What an amazing party and awesome friends.

2100--Staussen’s second dose of dex, ranitidine, and septra for the day. He took them all a lot better than he did earlier! He now has “ice cream medicine” since we mix the cherry-flavored septra with vanilla, and mask the zantac/dex with chocolate. It makes things so much easier, though he still tries to fight it a little.

2300--Auna and I left Dad at the hospital to care for Staussen overnight. It was so sad for me to leave Staussen. I knew he would be fine with dad, but Staussen’s my boy and I want to be with him every step of the way! I realize, however, that the counsel that most people are giving me is to take time for myself or else I won’t be able to care for him. Auna and I expected to be able to discuss all the things we have been waiting to do over the week, but we were both too tired! I tried sharing with her about a talk I read by the Prophet, and I fell half asleep while telling her about it. After I stopped talking, there was some silence for about 10 seconds, and then she responded, “oh, that’s so nice.” ...I’m sure she was listening intently, haha.

Sunday:

0630--This was the most sleep we have received in one night since getting here! However, we still felt super tired.

0700--Got to hospital while Stauss was still asleep. Doctors rounded with party hats on. Staussen was a little shy, but not as bad as yesterday. He ignored them and did his own thing.

0900--Medicine still a bit of a challenge to give to the lad. Even though changing out the IV doesn’t hurt Staussen (I don’t think it hurts because he always sleeps right through labs/IV changes when he’s asleep, though the argument can be made that he still feels pain but can’t properly express it, but let’s put technicalities aside…), he doesn’t like it when anybody puts their hands near his port. He took his “ice cream medicine” pretty well today. Only took 15 minutes to administer…

1415--Sacrament administered by Brother Gibby and his two sons, Preston, and Parker. I felt a calm feeling of reverence and peace as I pondered the Savior’s sacrifice. As I partook of the sacramental emblems, I made a commitment to follow the Lord more fully. I gained a greater desire to be a better disciple of Christ so that I can call upon the powers of Heaven for the benefit of my family. I felt so grateful to know that He knows exactly what I’m going through and what Staussen is experiencing.  The thought came to me that the journey over the next few years will be difficult, but things will work out in the end.