Maintenance – Day 1

Posted On January 31, 2019

The last few days with Tate have been so precious. He has been cruising around the house in his wheelchair and leaving Greg and me shaking our heads or giggling at his sense of humor. Catching glimpses of our son’s personality as it was before cancer has been so uplifting. It heals the heart.

Physically, Tate is better than he has been in months. He has gained back 12 pounds, and his appetite is still pretty strong. The Nurse Practitioner instructed me to stop giving him the appetite stimulants when I told her Tate asked his grandmother bring him a whole ham so he could make his favorite bagel sandwiches. The Nurse Practitioner had a good laugh, saying she has never heard of an “emergency ham” before.

Tate even went outside this week. I invited him to the patio to watch the sunset over the rooftops and was surprised to see him take his wheelchair into the yard to get a closer look at Dwayne. Dwayne is obviously not the cuddliest pet, but he’s very important to Tate. Greg has been taking excellent care of him.

On Tuesday Tate was cleared to begin the Maintenance phase of treatment. Hearing he was ready to move beyond the initial eight-month treatment phase hit us in a profound way. My brain and heart couldn’t decide whether to rejoice or crumble to little pieces on the floor after trying to hold it together for so long.

Joy wins.

This morning Tate had a lumbar puncture with intrathecal chemotherapy and Vincristine. He also started a 5-day course of steroids.

Dr. Wantanabe, the oncologist that treated Tate when he was first diagnosed with Leukemia, performed the procedure. It meant so much to us to see him today, and we told him so. We told him how we would never forget how kind he was or that he was the first person to give us hope.

Saying good-bye to Tate’s nurse Michelle was a little hard. She has been a great source of support and information, and her relationship with Tate has grown into something very special. She gave us each a big hug and sent us on our way, telling us to call if we have any questions or problems and that she’ll see us in four weeks. Greg and I looked at each other nervously; what are we supposed to do without a full medical staff checking on Tate 3-7 times per week? I can only compare it to bringing a baby home from the hospital and not knowing what to do with it.

Despite the driving and treatment, he made it through the day without any pain medication. Eventually the chemotherapy wore him down, and he took a big nap. The next time I saw him awake he had dark circles under his eyes and was shielding himself from light and sound. These side effects will likely decrease over the next two weeks.

Tate will be taking chemotherapy in pill form daily for the next three years in addition to his projected treatments at the clinic. The dose varies depending on the day of the week, and I am a little nervous about getting it right. There is another chemotherapy drug he will get once weekly. I am just going to approach it cautiously, methodically, so as not to make mistakes.

My heart is full. Our home is filled with quiet hope.