There is a chemo called Doxorubicin. When Doxorubicin is brought into a hospital room, it arrives covered in a dark, photosensitive bag because the light of day can harm it. When Doxorubicin is introduced to the human body in certain doses and suspensions, it requires a “rescue drug” to be given simultaneously to protect the heart.
Doxorubicin makes parents pray that their children escape with only small damages like hair loss, mouth sores, and nausea.
Because of Doxorubicin, cancer patients have heart tests at least once a year for the rest of their lives.
Its mixture of ruby hue and devastation earn Doxorubicin the fearful title “The Red Devil.”
Do I make it sound like it terrorizes villages on dark nights? It might as well. In fact, it is powerful enough that during Chase’s radiation treatment, he couldn’t have this chemo because it, coupled with radiation, would have been too much for his body.
For Chase, whose heart is, at the moment, in good condition, Doxorubicin has a common, but amazing (to us) effect. He gets very neutropenic (which means that the chemo eats his white cells down to a small and critical number) and it always happens, on a bankable level, on the tenth day after his last chemo cycle started. This is, in fact, so predictable that Bob and I can actually see the fevers coming on, pack our bags and be ready to call his doctors and drive to the hospital, all before we clock the first temperature spike… and it has been this way on every Doxorubicin cycle since August 16th, 2012.
Horrible.
Predictable.
The wretched routine becomes oddly comforting in its familiarity… the night of day #9, he cries out and sleeps badly; the morning of day #10, he lays on the couch, weak and white and his temperature hovers… and then it spikes and we are in the ER by the early afternoon at the very latest. Every time.
Yet, as I should well know by now, the only thing predictable about Chase is that you can’t predict him.
Today is day #11.
No fevers.
As I write this, I’m tamping down the overwhelming urge to stalk him with a thermometer. He usually has fevers right now and I can’t help but feel that there’s a monster of a temp simmering right under the surface of his hairless little forehead just waiting to erupt at any moment and the slightest exertion is sure to turn him febrile and tachycardic.
(By the way, one of my many coping mechanisms is hiding behind medical words… hence, the talk of neutropenia and tachycardia)
As I thought about this all day today (and tried not to think about taking Chase’s temperature), I was struck by several things…
By how much a cancer parent hopes for the best and expects the worst…
By how oddly stressful the breaking of a routine is… even a terrible routine…
By how much I resent not knowing what is going to happen from moment to moment…
As wonderful as it is to be out of the hospital, days with “The Red Devil” and unpredictable days like today remind me once again to pray for grace and take this life… Moment by moment.
“The heart of man plans his way, but The Lord establishes his steps.” Proverbs 16:9
So so sad for little Chase, Coleson (Grandson was Neutropenic, )and as I read your script, it brought such scary sad moments back for all of us as Coleson progressed to the next (WHATEVER)! One never knows WHY US, WHY
ARE THESE THINGS HAPPENING. ONE MORE THING as we went on the journey with Coleson. May God always be at your side and the love you all have for him he will be your guide. God Bless All of you.
Thank you, dear Jolene! God bless!
This left me shaking just reading about this horrific drug. If Chase’s MRI results came back this wk. as NED, why does he have to suffer this? Praying for all of you always.
Judy, I’m so sorry! Coming to terms with drugs like Doxo in the first weeks of his treatment was very intense…I completely understand your reaction. This cancer is extremely vicious and without the Doxo (and the 7 or so others he’s had in the course of treatment) he wouldn’t be NED. He has to finish the protocol and even then, AT/RT is known to come back…sometimes even 2, 3, and 4 times in a span of years. This is one of the biggest reasons many families become advocates for cancer research…to help bring to public awareness the effect of these drugs and raise money for research to perfect drugs that target the cancer cell and don’t have all these awful side effects.
That said… God is in control and Chase is doing so, so well right now.
Ellie,
That was worded so well, I understood all of it. Yes, isn’t it funny when even the bad routine, when it doesn’t happen, rocks our pillars. Psalm 75 talks about God holding those pillars steady which I’ve seen him do so much in your and Bob’s walk through this. Kathryn never have the “Red Devil”; what an appropriate name for that and it’s risks. We can do nothing but fold our hands in fervent prayer while at the same time hold them open in utter dependence on God who has all this being watched…….carefully. I love you my sister; I understand and when you look at Kathryn, remember, Chase, by God’s Grace has already beaten the odds. But those stinking tumor cells are not as compliant as some may think. Even NED is no human views evidence of disease from an MRI scan. Even they know better to keep the chemo protocol all the way to the end because cannot handle this again and if one cell, which cannot be seen with the naked eye or the MRI scan that, as you and I both know, gives a ghostly hue of what is going on in our loved ones head, if one cell fights thru this and begins growing…not good. I pray that those who don’t fully understand “Why still chemo if NED?” may understand the need to keep fighting. I love you all and praise God for his choice of allowing “NED” to be the determination.
I just wanted to clarify that it is totally understandable why the questions arises on why putting Chase thru anything more and I’m not knocking the questions be asked, but I know that is hard to answer over and over again.
Been there done that…bought the T-Shirt…..LOL.
You have so many that love your kids and you both. Without them, this would be that much harder to bear.
You are very blessed.
I am continuously shocked and pained to know what dear little Chase has had to endure. I put him (in my mind and prayers), in God’s arms with God looking down with Love at Chase and Chase looking up at Him feeling content peaceful and completely healed.
Love to all, maralee
dearest Ellie (& let’s not forget Bob)
Amazing how we adapt to the most unbelievable and even horrible circumstances and only keep from going under by the Hand of He Who walks on the waves!
You are in my prayers, amazing you can write, wonderful you can communicate even from a hospital corridor. So long ago there were only pay phones and infrequent conversations.
Bless you and Chase & Bob and the little ones and your family ~ oh, how we keep our children heart to heart always. Mary