So, it has been a stressful week. After a normal beginning (what is normal for us) with labs, LP, chemo, Evan developed a fever Thursday night. This is the first fever he has had since the start of his treatment and since diagnosis. When he started the blinatumomab infusions he had high fevers for a day or so each time but that was considered normal for the start of that immunotherapy drug. But this was different. Knowing we had an immunocompromised kiddo with a fever was pretty scary.
His WBC Monday was 2, on admission for the fever it was 5, and 24 hours later it was 1. All his other labs were goofy too, but nothing terribly alarming. All his blood cultures were negative, his covid swab and respiratory panel were negative too. He received three doses of IV cefepime and remained fever free for the remainder of his hospital stay. So he was allowed to come home Friday afternoon.
He's home and doing great! No fever, energy level is pretty incredible for having just received three different chemo drugs this week and being anemic. His appetite is pretty low but we keep encouraging food and fluids.
The real stress this week was fear of the unknown. Sure, infection can be fatal in a severely compromised person. Sure, fever and neutropenia can mean relapse of the leukemia. But what is reality? It is so hard to see a child go through such a brutal and unfair disease and treatment, as anyone can imagine. It is even more unfair and painful to think that he has done so well, even in spite of all the trappings of cancer, knowing the future is not guaranteed. The what ifs and maybes are paralyzing, at least for me.
In talking to Dr Strunk by speakerphone on Friday morning, he helped to put some of those fears to rest. For now. He thinks Evan had a mild virus and is not concerned at all about relapse for now. But as I think about this journey and have to live it every day, the anxiety level continues to be almost incapacitating at times. Jess remains strong in the faith that all this is for a reason and a purpose and that it will all work out in the end. She is my rock, our rock. But, even she says that she gets overwhelmed at times now. In the beginning she was focused on the "here is what we have to do to get through it, to make him better". Now the emotions are catching up and each day presents incredible challenges.
Over the past several years, I have been blessed to be in places of incredible darkness, both in clinical situations and in spiritual situations. For decades when I met people, it was typically on their worst day. Traumas and medical emergencies brought many people across my path. In that realm, we deal with the here and now, help to save and soothe and move on. In the case of the chaplaincy, we are called when someone is suffering their absolute worst day for sure. Loved ones having just died from car crashes, suicides, murders are some of the reasons my partner or I might show up. We are to somehow reflect God's amazing, pure, and beautiful light in some of the darkest situations in this world. John 1:5 says "The light shines in the darkness, and the darkness has not overcome it". In those situations, people ask why, they break down, they are so grief stricken they become angry or even pass out. Yet, we are to bring order to the chaos, show love and support during impossible situations, and find the words or just the presence to reassure them.
Yet, when the trial is as close as my own innocent and precious four-year-old son, the words are hard to find. When something new arises, the reassurance is difficult to feel. The anxiety level is through the roof and it is hard to control. My clinical and cynical mind overpowers my spiritual soul.
Sort of a revelation struck this morning. As we have been told many times, fear and uncertainty, even anxiety, are not of God. He tells us over and over again to not fear and do not worry. "God has not given us a spirit of fear, but of power, love and sound mind" 2 Tim 1:7. But, the devil who is alive and well today will use anything and everything to derail the precious thoughts and peace of mind that God ordained. So whether it is the NFL draft, a sick child, words from another person, money, booze, it doesn't matter what, the devil will use that to build pain, fear, anxiety, and mistrust. Any separation from the Word of God will be used by satan to wedge himself between us and the Father. Any space between our hearts and God will be exploited by the devil. I have lived it. We all have lived it. That's why it is of the utmost importance to be stayed in the Father at all times. Any space or distance will be used by satan to wreck your peace and freedom that we can only find in Christ.
I will try to hang onto these words if/ when the next challenge arises, whether it is Evan's situation, employment decision, worldly uncertainty, or anything else. For now, I am emboldened by God's presence and encourage everyone to cling to the faith that God is working in our favor no matter the situation. We need to limit the distractions from our true purpose here on earth. Distractions today come in many forms and are more accessible than any other time in history. We need to be wise and focus on what is important in our lives
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