Time Stands Still

Tate came into the kitchen briefly to ask for water and was happy to see it was raining. I was sitting at my desk looking out the window and was delighted to hear his voice coming from behind me. Any day he is strong enough to get into his wheelchair and leave his room, even if it is to report unsatisfactory living conditions, is a good day.

A few days ago I asked Tate if he could believe we were approaching the end of 2018. I tend to get retrospective this time of year and was curious about his perspective. Tate said it still feels like August to him since school, as he had planned it, never started. Time, it seems, is standing still in Tate’s room.

I spent some time this weekend organizing the medication/supply table, and Greg updated the calendar. With regard to Tate’s care, Greg and I have fallen into a routine where we both contribute in ways we are strongest. People who know me well will agree I should never be left in charge of the calendar. I have, however, become a very good drug giver.

Keeping the calendar and medications straight is crucial. Greg and I have both experienced that it is easy to make a mistake with the medications, and for Tate’s safety and overall well-being we want that to happen as infrequently as possible. We have learned to notate the times we give Tate anything. That way there is less chance we double up on medications without meaning to, and if there is an emergency we know exactly what he took last and when.

Tate’s medication regimen is constantly being adjusted to suit his needs and follow treatment protocol. There are some medications Tate gets on a daily basis, one he only gets only on weekends, one he gets once per month, some are taken only as needed, some can only be given at night, and some cannot be given at the same time as others. There are a few that have to be given for a designated number of days ranging between 4 and 14. For example, Tate’s dose for Thioguanine, one of the home-administered chemotherapies, is given at 2 1/2 pills four days of the week and 3 pills the other three for 14 days. It can be a lot to manage, but we have a good system in place.

Tate has been sleeping a lot the last few days. I am grateful for his new bed and comfy linens and pillows. My aunt wrote me a letter recently and said sometimes we are so busy treating the body we forget to treat the body, and I think she is right. I remember my sister insisting that Tate have a new bed right away and not really understanding why it was necessary. We were raised with a “use what you have” mentality, and, well, he already had a bed. Once the bed, contributed by the combined forces of my sister and mother, was in his room, Tate was immediately able to rest more comfortably. I am trying to be more conscientious of treating the body while treating the body.

Tate has an appointment Wednesday with the Nurse Practitioner that will determine whether he is able to continue with treatment Thursday. If his blood work is strong enough, he will get another Lumbar Puncture with intrathecal methotrexate and ARA-C through his port, and begin his last 6 Erwinia injections.

Greg and I ready for 2018 to come to an end and are looking toward 2019 with our hearts full of hope. Thank you for coming on this journey with us, for crying as we cried, bringing us food, sending us cards, washing our dishes, cleaning our house, running our errands. We have received more this year than we can ever give back.

Happy New Year

S.