Auna’s right, I (Ronald) often say I will finish a post and I end up putting it off...but not this time!
The last two months has been a period of readjustment. As mentioned in the last post, we went to Walter Reed for overnight admittance the day we arrived back from Utah so that Staussen could receive a PICC line and heart ultrasound. They wanted to admit him overnight to be the first procedure the next morning so we could get back home in the late morning. A PICC line stands for “Peripherally Inserted Central Catheter,” which is basically an IV with a long tube that goes through a major vein in the arm and ends near the heart.
Getting admitted was another eye-opening experience where I was given the opportunity to learn patience with others. Staussen needed IV access again since he didn’t have a port. I immediately requested the best individual to do it, and if needed, to use an ultrasound machine to guide the IV since Staussen was obviously a hard stick dehydrated. I didn’t want to have a repeat of day one, and after being spoiled with such trained pediatric workers at Primary Children’s Medical Center, I expected success on the first IV placement. Even at the hospital in Provo, they performed his peripheral IV via ultrasound on the first try so they wouldn’t have to put him through any more unnecessary pain. I may sound arrogant, but I think that is what every parent wants for their children.
Well, I was told that Staussen would have the best-trained nurse perform the IV. I believed them. After we settled ourselves in the room, we were taken to the treatment room to place the IV. I knew the nurse who was going to do it and I trusted that he would perform well. I think I may have made him feel nervous, because as he prepared to place the IV, his hands trembled and he looked in three different limbs for the right vein. He finally decided to try one, cleaned the area, penetrated the skin, moved the needle back and forth...and missed. He knew exactly what I wanted next--a more experienced nurse. I felt for the man, but I also wanted my son to receive the care he required. They all knew Staussen was a difficult stick, yet my initial request was not granted.
We returned to our room to await the second nurse for the IV placement. When they were ready, we returned to the treatment room...and there was still no ultrasound machine. To not belabor the account, the nurse had a hard time again. In frustration, I asked, “why are you all so afraid of using an ultrasound machine? I’m not upset at you, just at the situation. You all know his history of missed IV placements, yet you pursue the standard treatment for a patient who is not standard.” Sheepishly, they agreed with me. Again, I reassured them that my frustration was not at them as people but at their actions.
Long story short, they finally got another nurse (who was truly more experienced than them all but who didn’t have ultrasound guidance experience) who placed the IV properly.
Sleep was interrupted that night as emotions from day 1 returned in my dreams. Staussen had come a long way since then and his body had responded well to the treatment, but the ups and downs of his chemotherapy course has been anything but smooth. Consolidation phase was supposed to be easy but instead he came down with Candida parapsilosis infection and possibly fungal endocarditis. Despite being set off track a couple of weeks with the port removal, we have been reassured that it shouldn’t affect his long-term prognosis.
I was up at 5am the next morning to prepare for his 5:30 PICC line placement and heart ultrasound. Well, he didn’t get the echo until around 11am, and the PICC wasn’t placed until around 3pm. Because of the late procedure, we weren’t out of the hospital until around 8:30pm. So much for our early out from the hospital.
He then started Interim Maintenance I, the name of the chemotherapy phase he would follow for 56 days. The next two months consisted of daily heparin flushes through his line, daily oral Fluconazole (the antifungal medication), and weekly visits to the hospital for chemotherapy and dressing changes on Staussen’s PICC line. Staussen has become a pro at swallowing pills. For a while he had to cut the pill in half, but he now swallows it whole with ease.
The dressing changes were no fun. Staussen often cried as the patches and protective layers were removed because his skin had broken down in multiple places. One thing he did enjoy out of the dressing changes at Fort Belvoir was seeing all the superhero toys that were lined up at one of the nurses' stations.
He developed an eczema-looking rash over his abdomen the last two months. We think that it is due to the chemotherapy, which can cause changes to the skin, so we plan to see further changes down the road--hopefully in the improvement of the condition! When it first began it just looked like dry skin over his belly, but over two weeks it spread to his chest, arms, and legs! It looked more like a viral rash because it became maculopapular (spotty and bumpy) at one point. Once we started putting moisturizer on his body, though, it seemed to clear up pretty well.
The last two weeks of Interim Maintenance I started to take its toll on Staussen. He became more tired, sleeping two to three times a day. He became less interested in playing with friends and going outside; rather, he wanted to stay home and hang out with mommy, daddy, and Baby Daisy. He also decided that he likes sleeping in our bed in the middle of the night. He would often wake up around three or four in the morning and cuddle with us in bed. Our full size mattress lived up to its name, because for a few hours in the morning we would have all four of us in the bed, somehow finding room to sleep without anybody suffocating.
At our last appointment it was basically confirmed that he had fungal endocarditis. The ultrasound from Primary Children’s was compared to two ultrasounds performed at Walter Reed, and it was confirmed that the spot seen on his mitral valve was gone. It doesn’t make complete sense that the fungal vegetation affected the left side of his heart rather than the right side, since his port sits right outside the right upper chamber; but, since the spot disappeared after treatment with antifungals, the best conclusion is that the lesion was actually Candida. Despite it disappearing, it was recommended that Staussen continue antifungal treatment for at least another six months, and likely longer.
He had a 16-day break from chemo before beginning the current phase, Delayed Intensification. It was a great two-week period where he regained energy, strength, and courage to jump and climb up objects. During this time it didn’t even seem like he was sick.
Last week, Staussen said goodbye to his PICC line and received a new port. We arrived at the hospital early Wednesday morning (March 4th) for his surgery. He actually didn’t want a port anymore, because the PICC line seemed so much better to him. However, we asked him what he wanted to do after he receives his port and he said, “pinata!” So Auna messaged some of his friends and invited them to a last-minute pinata party at the church.
The surgery went about three times longer than planned. The doctor wanted to use Staussen’s right internal jugular vein to pass the port tubing but it became pretty complicated finding it; so he went through Staussen’s left subclavian. He also made a new port pocket for fear of using the old one and it still being contaminated with Candida (not to be confused with Canada! Shout out to all my cousins in B.C.!) So he now has parallel scars on his left chest. The first few days the site was very tender and he didn’t want to move, but he was soon playing in the bathtub again.
We will soak up the last few days before Delayed Intensification begins. I know that people have said that it isn’t as bad as the first month of chemo, but I have learned to only take other people’s leukemia chemo experiences with a grain of salt--no two situations are the same. Staussen has shown time and time again that he isn’t the run-of-the-mill leukemia patient--from presenting at a very late point in the disease process, to receiving a fungal infection on his port during an “easy” chemo phase, to walking within 24 hours of starting treatment, which wasn’t expected for another few days at least. Hence, we appreciate people sharing their past experiences about the chemo phases we are currently going through, but we always remember that Staussen is Staussen and his body will react however it will.
The school and military have been so supportive of me and my family. After the fungal infection episode in Utah, Auna and I realized that this next year will be very unpredictable, not to mention the three-and-a-half years of treatment, so after pondering, praying, and discussing the decision with Auna, I decided to decelerate to the class of 2017. Since I’ve completed most of the year already, I am doing research and studying to open up my schedule to go to Staussen’s appointments and help Auna. This is such a blessing for me to be able to do this.
So, in light of all the uncertainty that lies before us, we keep moving forward with faith and trust in a Heavenly Father who hears the pleas of our hearts and provides strength through these difficult times.
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