Stories of children and their loved ones

Sandra Bois, Megane's mom

A story of a mom who is exhausted and who wishes wholeheartedly that her daughter makes it through.

Mégane

In September 2017, Megane, my 12-year-old daughter, had just started high school. A few weeks after the start of classes, my beautiful sporty daughter came home, burned out, pale, in pain, with shoulder pains and a bleeding nose. I could see that all this was not normal, I thought she probably had mononucleosis.

On 4 October 2017, after passing a battery of blood tests at the doctor’s office, the diagnosis falls …. LEUKEMIA.

My doctor informed us that the on call doctor in hematology oncology at Sainte-Justine Hospital was waiting for us and that my daughter was surely going to be hospitalized. Everything started boiling over in my head. Yes, we were talking about cancer. I thought: “Why my 12 year old daughter?” She likes sports, she has good eating habits; why she, why us? What did we do to deserve this?

Well, nothing. The disease does not choose. They say they send the hardest tests to the strongest soldiers. Yeah, right! Me, strong? Pfft! Not really… but you learn to be. Now that we had both feet firmly planted in the system, we had no choice but to face leukemia. From the first week, we were told that my daughter had a rare and high-risk form of leukemia. That’s it, I stop breathing. Just hearing the word “high-risk” gives me chills.

How can I explain to my daughter that she will not go back to school, that she will not be able to see her friends for a while? How do I manage her anger going forward?

After the first chemotherapy, her hair was still holding on. I dared to think that my daughter would not lose her hair, that she would be the exception. Unfortunately, it was short lived. Her hair started falling. One day I washed her hair and I had the trash can right next to the bath to throw the clumps of hair away. It was a difficult moment for both her and me. But, well, my daughter just laughed it off saying we would waste less shampoo.

Several months passed and the treatments seemed to be going fine, until a lumbar puncture in April. The cancer cells were back. No! That is not what we wanted to hear. At this point, we’re hearing about bone marrow transplant. It’s scary; I did not want to live that. But there we were. June 19, 2018, admission to bone marrow transplant. Sterile room, no exit, must disinfect everything, wash and clean before entering the room. We had to pay good attention to her diet. Many restrictions. A lot of work for parents. Headaches and puzzles.

Radiation Therapy: Seeing your child do these types of “grown-up” examinations; it is not easy. She is strong, well, more than me, more than us.

June 26, 2018, was like a rebirth. The transplant went off perfectly without complications. But we discovered a new term: GVHD. GVHD is a disease following a transplant, the graft against the host. So basically, it’s the new cells attacking the old cells. Another stressful scenario to manage.

Generally speaking, Mégane’s story went very well. To date, no GVHD or other complications. Our girl is fine. But have you thought about us? The parents?

We live in a surreal world when we have a sick child; we are disconnected. Continually stressed and wanting to know if our child will be okay. The slightest anomaly (fever, rash, pimples, redness) for us, the parents of a transplant, is a disaster. We are in panic mode. Is GVHD on the horizon? Is it rejection of the marrow? We’re always worried. There are the daily questions. We must give the medication on time, not once can we forget. We play the role of parent, nurse, doctor, psychologist, cook, and not to mention, professional cleaners! You have to be able to answer the questions of the child, family, and friends. You have to be able to take care of the rest at home, washing, cleaning and so on. Basically, we forget about ourselves….