One simple word with significant ramification: STEROID(s). I could write another tragic poem about their wrath. Perhaps I will another day. For now, I will leave my long-winded explanations and get to the punch lines as quickly as possible. This will be my cliff notes version of their prolonged stay in our home.
Steroids are INSANELY EFFECTIVE at eliminating leukemia and lymphoma cells, but their SIDE EFFECTS ARE PURE EVIL. I know nothing of how they work. I just know that they do. They are necessary to the cure. They are crazy powerhouses against cancer cells but they horribly mangle physical and mental comfort!
Each time I injected my child with more of “the cure,” I felt as if I were actually poisoning him. It caused him such unimaginable discomfort. IT TRANSFORMED HIM INTO SOMETHING UNRECOGNIZABLE!
I have a handful of videos preserved from this time in our lives. They are sad to see; Erich won’t even watch them. Still, I am compelled to share a couple scenes in order to expand comprehension of the steroid transformation. The following was recorded on day 9 of Brooks’ treatment. He had a lucid moment and was standing on his own two feet. He wanted to be a part of the scene. He wanted to play and interact. These simple wishes were not granted and all he could do was exist in his uncomfortable, vegetative state, and watch the world go by.
Also, please notice and applaud our hero, Max. He was (is) everyone’s best medicine. He kept us laughing when all we wanted to do was crumble and cry.
This phase of treatment required 19 STRAIGHT days of steroids. Brooks’ physical discomfort easily lasted another two weeks beyond his last dose. We were well into May before Brooks could smile again.
Here is a summary of his dosing:
April 7 – Began treatment against Mature B-Cell Lymphoma . Along with the protocol for that cancer, Brooks began receiving high-dose Prednisolone twice a day.
April 12 – Brooks’ diagnosis changed to Immature B-Cell ALL Subtype MLL and the type of steroid changed also. Brooks began receiving high dose Dexamethasome (twice a day for 14 days).
He received his last dose of steroid April 26th. I STILL REMEMBER FOCUSING ON THAT DAY… The 19 days stretched for eternity.
After making it to the April 26th finish line, I expected his pain to show diminishing signs each day. The steroids did not wear off quickly and they continued to maintain a tight grip on Brooks’ comfort. I held him, with little reprieve, morning, noon and night for thirty one days straight. NO EXAGGERATION! Though my arms ached, God gave me endurance to prevail.
Brooks was depleted of any energy but totally unable to sleep. He would wake incessantly through the night. His longest stretches of sleep were one or two hours long. He was in a constant haze because of his exhaustion.
Beyond that, he ate unrelentingly. He was always hungry and talked about food in his sleep. Noodles slathered with butter and chicken nuggets were a staple. I made sure to be well stocked. I had meals prepared in advance of the nights to facilitate our repeated kitchen visits.
We joked about it: how he would go to sleep with a nugget in hand. We tried to keep the mood light. It was necessary for everyone’s sanity to go on as if it were all normal.
Here is an illustration of Brooks’ absurd desire to perpetually feast. He does not appear to be terribly unhappy or uncomfortable in the recording. He is just so lethargic, almost comatose; his inquisitive spark had been squelched. (This video was made on day 11 of his treatment.)
I would catalog the above as peaceful and I am grateful for its tranquility. Nevertheless, when I see Brooks’ helpless face and insipid reactions, I want to reach out and cradle him and tell him everything is going to be okay. My heart breaks for him all over again.
Of course, the steroid weeks were filled with many scenes far more difficult than this to endure; incidents that I did not document by camera:
- The times when I held Brooks down to perform some necessary medical procedure while looking into his pleading and distressing eyes;
- The ridiculous and vexing maintenance that the Broviac catheter required;
- The hours when my arms ached from holding onto Brooks, begging for reprieve;
- The days that I neglected Max;
- The terrible screaming matches between Erich and I, born from frustration and fear;
- These monstrous disagreements conducted right in front of our confused and frightened children;
- The moments when I looked at Brooks and knew his pain would cause normal men to break.
These scenes echo in my mind and I simultaneously want to forget them forever yet cherish them absolutely. They are necessary souvenirs which serve as everlasting reminders to appreciate life, especially the mundane. They are proof of the strength that God authorized, allowing me to hold on tighter while professing unreasonable hope.