Spending time with my family on this Mother’s Day has been a joyful respite from a difficult and exhausting week. Justin has not been feeling well, and we received difficult news concerning his next cycle of chemo. The dosages will continue to increase, meaning greater risk of side effects. His protocol also includes a new drug which can cause early heart disease. Justin will have an echocardiogram to make sure his heart is up for the stress. His doctor informed us that he will need regular heart monitoring for the rest of his life.
I am often asked why Justin is still undergoing aggressive chemotherapy when he is already considered to be in remission. I think the best explanation is that remission does not mean that the leukemia is entirely gone, but that his body is responding well to treatment. In past years, oncologists stopped treatment after remission was achieved. In most cases, the cancer quickly returned and frequently became fatal. Remission is very difficult to achieve a second time.
After much research, trial and error, it was determined that children with A.L.L. (acute lymphoblastic leukemia) should receive three years of chemotherapy. With this protocol, there is a ninety-five percent chance of leukemia staying in remission for the duration of their lives.
This is wonderful, hopeful news. But is it a long journey. And one we have only really begun.
In any given day, I swing an ever-moving pendulum of emotions. A moment of feeling so grateful that Justin has a very hopeful treatment prognosis can quickly turn on me. Especially if Justin is struggling through fear, sickness and pain. Or we are sitting with his doctor discussing chemo drugs and their potentially harmful side effects. Suddenly I am worried, scared or overwhelmed. This flip-flopping can occur many times throughout the day, leaving me feeling drained and emotionally worn out.
Maybe you can relate to these feelings, perhaps relative to your own difficult circumstances. What can we do to keep from losing our minds or spiraling deep into depression?
Well, in my humanity, I often turn to tangible comforts, chief of these being my junk food. But I’m simply putting a band-aid on it. A box of Oreos can absolutely make me feel better for a short amount of time. But those creamy, crunchy, chocolatey delights can NOT speak words of Truth, offer living water to my thirsty soul or provide real, sustaining joy.
I must turn and surrender my heart and mind to God, my Father. (Romans 8:15) Jesus, my Redeemer. (Isaiah 44:6) The Holy Spirit, my Guide. (John 14:16-18, 26)
God has given us His Words of Truth so that we may comfort ourselves with His promises. He IS with us. (Isaiah 41:10) He WILL work everything to our good. (Romans 8:28) And He DOES give eternal life to those who place their faith in Him alone. (John 3:16)
We take shelter and find peace when we endeavor to thoroughly permeate our hearts and minds with Truth.
Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
You will only observe with your eyes
and see the punishment of the wicked. (Psalm 91:1-8)
Grace be with you, my friends.
grace steps 
Hi Katie, I can only imagine what your going through. I hope my prayers and my moms are helping some. I thought also when he was in remission no more chemo but your grace steps told me differently. I will continue to pray that Justin and you both stay strong and that Justin won’t get a lot of side effects Love all Kathy
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Katie, I love to read what you write. You are very inspiring and very brave. I love that you share your humanity and tell of the struggles that you encounter every day. But God!! You always end on a positive note and that is what we as christians are supposed to do. Keep our eyes on the goal and the path set before us. Trust God and His mighty power.
May God continue to strengthen and empower you. Praying always for you and your family.
Love, Pat
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