“It’s a Journey” as told by Mom

A’miree in her hospital room

Last year, my son was born with a congenital heart block. He had to have a pacemaker put in immediately. We were in the hospital for quite some time with him. After that, we enjoyed normal everyday life. He was doing well. My daughter A’miree was in school, hanging out with little cousins, and having playdates.

I could never expect what was to come. Literally one month after A’miree’s sixth birthday, everything changed. She was not feeling well, not playing or eating. She had an elevated fever and was saying that her stomach was really hurting. We ended up going to the emergency room. They pushed on her abdomen to see where her pain was coming from and did a CT scan. Afterwards, they brought me to a different room, kept A’miree in her room and took my son and gave him to another doctor. My first thought was, “They are separating me from my children, what in the world is going on?”

They said, “You need to sit down, we want to share some information with you.” They told me they saw a cancerous tumor in A’miree’s kidney. At that moment my heart just dropped, it felt as if I was just hit with a bag of bricks. I wanted to cry, but I couldn’t because I knew that I needed to stay strong. They couldn’t give me an exact diagnosis, so they had to transport her to another hospital an hour away. I couldn’t be in the ambulance with her, because I had to drive my son. On the ride over all I could do was cry while I was not in her presence. Upon our arrival, the doctors came in and told me A’miree had Wilms tumor, a rare kidney cancer. The next day she was in surgery and had her kidney removed.

After analyzing some of the scans, they discovered that some of the cancerous tumor had spread into her lungs which meant that she would be doing chemotherapy treatments followed by radiation. This news saddened my heart tremendously, as it does every day in this process, but we remain positive and take things one day at a time.

A’miree began to ask more and more questions about the medical terminology that the doctors had been using. She asked what chemotherapy was and what it does. I explained that her hair would begin to fall out from the medication that would make her healthy again. She wanted my hair to match hers, so without a second thought the clippers came out.

Everything has changed for us. We don’t know what things are going to look like, so having support is essential. The social worker referred us to There With Care and from that point on they have been reaching out to me consistently and bringing things that we need.

I haven’t been able to work since this happened, so they’ve been helping with gas so I can go back and forth to the hospital. They’ve also helped with food, clothes, cleaning supplies, toiletries, and diapers and wipes for my son. They’ve really helped with time management too by giving us meals already prepared. That takes so much stress off. At times it gets very lonely and overwhelming. Having someone consistently reaching out to show that they care really matters.

When we first started, they said that the medical course was about 25 weeks, but we are now at 40 weeks. This journey has been one of our most challenging, yet every day brings something new. I try to keep A’miree comfortable, keep her happy, and uplifted. Because if she’s doing well, and my son’s doing well, then I’m doing great.