#Chemo

6 Things I Learned My First Year as a Cancer Mommy

Cub at age 5, October 16, 2014 -- 4 days before his diagnosis.

Cub at age 5, October 16, 2014 — 4 days before his diagnosis.

Over the past year, I haven’t allowed myself to look back very often. When Cub was diagnosed with Acute Lymphoblastic Leukemia, I made a commitment to moving us forward, with our eyes on the prize of completing treatments and Cub once again being a healthy, happy little boy.

Today is the one year anniversary of his diagnosis, and in order to properly acknowledge the progress we’ve made, I’ve had to force myself to look back over what was inarguably the worst year of our lives.

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Cub doing some schoolwork while inpatient for a fever.

We experienced the emotional devastation of his initial diagnosis; being whisked away to Memphis for 6 1/2 weeks of Induction chemotherapy; a high fever that wouldn’t go away; being in isolation for 5 of those weeks; my baby losing his hair; watching him have numerous surgical procedures and enduring the pain of endless pokes and port accesses; my training to administer antibiotics through his port when we were alone in housing; the grocery bags of medication and supplies that I organized in the drawers of our housing dresser; having security deliver all our meals once we were placed in housing after 10 days in-patient because we were in isolation; Cub not getting to see or play with any other children; the exhaustion and loneliness;  and the weakness and incessant nausea caused by the medicines that were saving his life. The wonderful staff at St. Jude promised me it would get better, and it did. On December 8th — one day after my birthday — we found out he was in remission. It was time for him to move forward into the Consolidation chemo phase, and for us to go home.

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Cub and his bag of fluids, “Mr. Peabody.”

The Consolidation phase was tough — lots of nausea, new meds, and frequent 5-hour trips to Memphis where we would check into the Medicine Room of an evening to have Cub’s port accessed, labs drawn, and get a large bag of fluids attached. We decided to name our bag, as it would come with a portable monitor and shoulder strap. It would go back to the housing room with us, and it was quite heavy. Cub couldn’t lift it himself, so I carried it for him, and we went everywhere in tandem. We named his bags — alternating between Sherman and Mr. Peabody. He had to have the fluid in order to help his body properly flush the chemo treatments, and he would have to take a “rescue” drug afterwards in order to protect his organs from failing. He would always get nauseated on the windy Arkansas roads we took to get back home, but he never complained.

A few months — and several floor mats — later, we completed Consolidation, and Cub graduated to the final phase of chemo: Maintenance. I foolishly thought that this would be 120 weeks worth of a downhill slide. We would be going to Memphis less frequently, and get 3 out of 4 of Cub’s weekly chemo infusions at our local affiliate. Several weeks into Maintenance, Cub was scheduled for what’s called Reinduction — where his body is revisited by the early chemos of Induction. He was to have two reinductions. But, Cub had a rare side effect from a med called L-Asparaginase (we call it “asparagus”), and it caused him to have a stroke. Did you know 6-year olds could have a stroke?

That was the most terrifying experience of my life. The L-asparaginase can make the blood have more of a tendency to clot, or it can make the blood have more of a tendency to not clot. In Cub’s little body, it increased the tendency for BOTH. Cub developed an inoperable clot in his brain AND bleeding from blood vessels in his brain, but through God’s grace and the wisdom and experience of some very talented medical teams, he survived with no cognitive damage and minimal physical issues from which they expect him to fully recover. And, because he is considered low risk, his primary St. Jude physician was able to cancel the second reinduction, so Cub never has to take L-Asparaginase again.

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Cub enjoying an ice cream at St. Jude’s after an inpatient procedure.

Today, one year after diagnosis, we are 40 weeks into the last phase of chemo, with 80 weeks left. Cub has on average 2 physical therapy treatments per week, 2 occupational therapy treatments per week, one clinic appointment per week where he has labs drawn and receives a chemo infusion. He takes anywhere from 15-30 doses of medicine per day, depending on his treatment plan for the week, including 2 blood thinner injections that he will be taking until the brain clot is gone. We go to St. Jude once a  month for a spinal procedure wherein he is put to sleep and chemo is injected into his spinal fluid so it can wash his brain to prevent leukemia cells from developing there. In a few months, these trips will go down to once every 16 weeks or so.

This last year hasn’t been horrible, or lost time. It’s just been hard, and this Cancer Mommy has learned a lot about life, love, and motherhood. One day, this will all be behind us — everything but the lessons we’ve learned along the way.

Here are just a few of the many sweet lessons that swirl in my heart everyday. I picked six because Cub is six 🙂

  • I have survived the realization of some of my very worst fears, and come out stronger, braver, and yes — even happier. There is joy to be found in every circumstance — seek it out, embrace it, and let it empower you.
  • Every day, I sit in awe of my little boy — he has endured more in the past year than most of us will in a lifetime, yet he remains compassionate, creative, humorous, loving and joyful. Circumstances don’t define you – you define them.
  • Not everyone is able to walk this journey with us — it might be too much emotionally, or they have other things going on, etc. But, we have been embraced by SO MANY people who love us, walk beside us, send us encouragement and lift us up in prayer. Our darkest days inspire others to shine and share their light.
  • Life radically changed for us one year ago today, and at some point early on, I had to accept that. My work, my plans, my time and expectations are all now dictated by a medical protocol and all the unexpected things that accompany it. Be honest with yourself about what you can and cannot do – recognize your limitations, but don’t sell yourself short. Accept your reality and do your best with what you have every day.
  • We are traveling a long road to healing. Sometimes it’s exhausting. The Cancer Mommy can’t afford to get sick and run down. I’ve learned that even five or ten minutes of self care make a real difference in my personal well-being. Take a walk, get your favorite drink and sit on the porch, read a few pages of a book or magazine, or go lay on your bed with the timer set for 5 minutes. You have to take care of yourself in order to take care of those you love.
  • When our child is facing a life-threatening illness, our instinct is to dig in and sit vigil over them — to prepare for battle with all the focus and force of a mother protecting her young. And this is a good thing. But, we have to remember that he or she is a child, and this war is set against the backdrop of their childhood. Don’t let cancer take your son or daughter’s childhood — make an effort to let them experience the magic and wonder inherent to their little beings.

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.