What I Didn’t Say — Shedding Light on the Realities of Childhood Cancer

unnamedWhen I posted on Facebook that we’re taking Cub, my son, to the hospital because he has a fever, I didn’t say that whenever his temperature reaches 100.4, we are supposed to have him to the hospital within 1 hour so broad spectrum antibiotics can begin being administered through his port immediately, or we might not be able to beat whatever is causing the fever.

When I posted that Cub had severe hand and foot pain, I didn’t say that some of his chemo meds cause severe, usually temporary nerve pain (exactly like diabetic neuropathy) in his extremities and sometimes throughout his whole body. Sometimes, it causes excruciating pain just to be touched.

When I posted that Cub was constipated, I didn’t say that some of his meds cause his bowels to fall asleep. It is not a matter of eating more fiber, drinking more water, or getting more activity — a part of his body actually shuts down.

When I posted that he had severe cramps, I didn’t say that he’s receiving maximum doses of Miralax, Lactulose, and Senna to stimulate his bowels because an impaction removal procedure is not possible on a patient with a compromised immune system because it could cause a devastating infection.

When I posted that his counts were a little low, I didn’t say that his ANC had dropped to 200, or 40, or even zero, leaving him with literally no immune system. This is usually caused by the chemo meds.

When I posted that a friend brought me lunch, I didn’t say that out of a 72-hour hospital stay, Cub and I were alone for 69 hours of it.

When I posted that we were tired, I didn’t say that we had already been dealing with nerve pain for a week before being admitted to the hospital, and neither of us had had a full night’s sleep in almost 2 weeks.

When I posted that he was experiencing some relief, I didn’t say that he was still suffering from such severe nerve pain, that he couldn’t hardly roll himself onto his side to get out of bed, and if I touched him to help him walk, it would make him scream.

When I posted that he’d been feeling a little lonely and blue, I didn’t say that because of his immune system, he’s only had 4 playdates in the last year, including a belated 6 1/2 birthday “party” because he was in the hospital on his 6th birthday. And, I didn’t say that he receives a strong dose of steroids 5 days out of every month that causes a range of emotions – from hyperactivity to depression.

When I posted “only 83 weeks to go!,” I didn’t say that my 6-year old son has a total of 2 1/2 to 3 years of treatment, with 1 year almost behind him. I didn’t say that he sometimes thinks he can’t do it, and that it’ll never end, so I made him a chart to mark off every week, with the last week marked in red.

When I posted #lovemyboy #leukemiawontstopus #braveboy, I didn’t say how sometimes I feel so unworthy of this journey, yet my heart swells with pride for my son even on the hard days. Especially on the hard days. I didn’t say that I have a 6-year-old son who has endured more medical procedures and medications than most of us will in our lifetime, yet he can still laugh and play and love and dream, and teach his mommy how beautiful life is, even on the hard days.

Especially on the hard days.

 

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7 comments

  1. You and Cub have been on my heart so much here recently. I know the journey is so long and the road is rough, but I pray the end will come and Cub will be okay and you will be okay too. One day at a time. What a wonderful mother you are to this precious boy. My love to you both!

    Liked by 1 person

  2. Hi cuz! I love even though I technically barely know you. There has been so many times I have ached wishing we were closer so I could help you. I know wishing won’t help you, but maybe knowing it might help your loneliness. You guys have a team of people here in Nampa plus my FB community who has fallen in love with you all and they 1) ask after his progress and 2) pray for you all!

    If there is anything I can do long distance for you please tell me.

    Love you lots
    Mare

    Liked by 1 person

  3. I am reading your story and seeing a woman who continues to remind people not to take anything for granted.

    Sometimes I have to remind people do not compare your tiredness to someone going chemo. You can not begin to understand until you have experienced it.

    I appreciate how honest you are in your blog because we need to hear it. If it is hard for the adults I can not imagine how it is for children.

    One of the hardest thing to do is say God do what is best for the person I loved according to your will.

    I pray that you will continue to have people who will be willing not only to listen but to be with you always.

    Like

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