January 19, 2016


Maintenance Day 285: We’ve Come A Long Way

Thursday was Scarlett’s monthly appointment. We met with Dr. B for the first time in quite a few months. He looked at Scarlett and was amazed with how well she looked. She really is thriving! All of her labs were great. If she continues to do well next month, we will increase her 6-MP back to her target dose. She will then be back up to 100% of all of her medications. Scarlett is even growing! So much in fact, that two of her medications had to be adjusted to reflect her new height and weight.

The only problem that she encountered this month is the itchy feet. Her feet still have a red rash under the skin and red, dry, cracked skin above. Her feet itch so badly, especially at night, that she typically requests an ice pack to take to bed. The cold helps the itching to stop enough for her to fall asleep. It appears that she has some sort of fungal infection. So we added two topical medications. If the infection isn’t resolved by her next appointment, we will consider adding an oral medication as well. Since she is immunocompromised, it could take a while for it to go away. But it honestly looks a lot better already!

Evangeline also had an appointment this month. She met with the Child Life department to discuss her fears. She was so excited to go do a project with the “play ladies”! After she met with them, they came back to discuss their conversation. She talked about how she’s not afraid to go to doctors any more because she goes to doctors to get stitches and Scarlett goes to make her cancer go away. They talked to her about how we go to doctors for lots of different reasons and that Scarlett’s cancer is not contagious. I hope that she absorbed something from the conversation but we will continue to ask and discuss it at home as well. When I asked her what she did, she responded “mom, I am not going to talk about that. It’s a secret!”

This past week has gotten me thinking about something that I’ve avoided for a year and a half – the end of Scarlett’s treatment. We attended Isaac’s bell ringing at Children’s Hospital on Friday. It was a great experience not only for Brock and I, but for the kids too. We talked a lot about “Isaac’s celebration” and what that meant. Dr. B talked about “the last year of Scarlett’s treatment” and that the end was in sight. We have always tried to take one treatment at a time. Don’t look past that because we don’t want to count our chickens. We never want to assume that she will be cured. But we also want to start thinking about Scarlett’s celebration. Scarlett says she wants a butterfly party with balloons and a pink cake. We will cautiously start thinking ahead and planning for that day.

In the meantime, we were able to look back a little bit on Friday. This was the first time that we were at Children’s since Scarlett’s diagnosis. We were quite nervous about how this would feel. As soon as we walked in the door, we saw the fish tank. It was the fish tank that we walked to every day. The fish tank that we took their first pictures in front of when they saw each other. As they climbed up to sit there, my eyes filled with tears and my breath caught. Everything was so different this time. We were in a better place. We have the future to look forward to. We are stronger and better than we were before. It was a great moment to remind us of how far we have come. Congratulations Isaac!

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