Evan had his third treatment for this "delayed intensification" phase last Tuesday. He received doxorubicin and vincristine via his port. He continues on twice daily dexamethasone at home, along with a slew of supportive medications for heartburn, nausea, constipation, and such.
Tuesday after his treatment, we came home and wanted to play! The weather was beautiful Tuesday and Wednesday, so we decided to let him be a kid and play outside. He rode his four wheeler all day both days, played in the barn with his bike and roller blades. (Rest assured, his platelet and hemoglobin counts were normal, otherwise we would have limited this activity!). Anyway, he was like his old normal self. It was truly magical to watch how well he was doing. We had our normal Evan back! For a while, both days, we could actually forget about the diagnosis and the realities and just breathe. It felt great.
Thursday through today, though have been different. It's colder outside so we have been keeping him inside. He has been battling constipation, which sounds like no big deal, but for Evan and his immunosuppressed state it is a great concern. So we have been aggressively managing that and having success. He has been down and, it seems, depressed. No fevers. No sign of acute distress. He has facial flushing from the steroid and he has gained water weight for sure, but he has just been lying around. His appetite is really good, driven mostly by the steroid. He has been eating and drinking a ton, in fact! But his lying around is concerning. It's probably "normal" during this phase, whatever that is.
The issue is, Jess and I both are nurses. I have decades of experience in emergency medicine and EMS type stuff, so I know a little about a lot. Jess is an adult ICU nurse and Neuro nurse. So she knows that stuff well. But, we know little about pediatric leukemia and we learn more every day. In fact, we know enough to be dangerous and drive ourselves crazy. We see new symptoms and think the worst, mostly because we don't know. If someone was shot in the chest 10 times in front of me, I could help. I could do my best to fix it. The Evan situation is truly out of our control, and I surely can't fix it. As a father, there is nothing worse than seeing what is happening and not being able to fix it.
But, we have a tremendous team at ProMedica Ebeid Children's who can answer the questions and do what is right for Evan. And of course, we have our faith. We do know that God is ultimately in control and has a plan. When my little girl, Grace, had open heart surgery when she was six years old, I leaned on God's plan, His healing, His protection, and it all worked out wonderfully. Same goes today. So, while it is my nature to want to fix Evan's problem, I have to realize I can't. But I communicate several times every day with the One who can.
So many in our families, our communities, in our world are suffering from similar stresses, many are even worse than ours for sure. I encourage anyone who is looking for the answer to open a Bible and listen to God's word. He is always with you.
Psalm 139:
"You have searched me, Lord, and you know me
You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways.
Before a word is on my tongue you, Lord, know it completely.
You hem me in behind and before, and you lay your hand upon me.
Such knowledge is too wonderful for me, too lofty for me to attain.
Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast."
Hold fast to these words even in the storm. We are trying our best to hang onto His every Word in our storm. Jess is a rock. She is the rock of this family. Her strength and faith is amazing and I am humbled by it.
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