September 23, 2015


Maintenance Day 168: Growing up

Today was the beginning of Scarlett’s third cycle of maintenance. Last night, I chose to be honest and proactive with her. She is growing up, maturing, understanding and accepting more. I told her that tomorrow was the day she would go back to the doctor, that she would get her poke in her back, her butterfly, and that she wouldn’t be able to eat. She cried. She protested. She understood.

It has now been 168 days since the start of maintenance and I can’t believe how much Scarlett has changed! She talks non-stop whereas four months ago she spoke only when she really had something to say. She runs her silly little one arm swinging run when before she was slow and a little “limpy”. She can now climb the stairs without holding the railing instead of pulling herself up with it. She dances, sings, laughs, reads and tells stories. Scarlett and Evangeline get along better now. They play together and interact more. She has blossomed into a funny, sweet, and loving little girl.

Seeing how far she has come makes me so sad for all that we missed. We didn’t realize that Scarlett was so sick that we didn’t truly know her. She didn’t have enough energy to play or laugh or really show us her personality. We thought she was quiet and reserved. She is proving us so wrong!

This has been a trying but joyous month for the rest of us. Tate started kindergarten this year and didn’t get off to a great start. It took two weeks of crying (both from him and myself) to really get into it. It made for long days of worrying whether he was crying at school. He seems to be doing better now. He talks about friends he is making at school which makes my days much easier.

Scarlett’s labs were good today (Hgb 12.5, Plt 226, ANC 1624) so we will increase her mercaptopurine by 60%. If she tolerates this dose increase, we will increase her methotrexate again next month. We are hoping and praying for another healthy and uneventful month.

As a reminder, this Sunday is the Courage Over Cancer 5K. Come and join us if you can! Our Snowdrop friends will also be doing their 24 hour run through Appleton. If you see them, give them some encouragement and kindness. Or go out and run with them! They do this for some really great kids (just a little biased here!) and are really great people themselves. Also, our next Chain of Hearts recipient is a little girl who loves My Little Ponies, nail polish and dress up. We are always looking for donations to fill their backpacks nice and full! Thank you to everyone who has donated, plans to run, and has done so much this month to raise awareness for childhood cancer!

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