Maintenance Day 140: A Good Day

Today was another chemo day for Scarlett. The day started off like a normal day. I was woken up by Scarlett trying to climb into our bed saying “I have a tummy ache”. Scarlett complains of tummy aches every night when she doesn’t want to go to bed so usually we take this news with a grain of salt. I got up to take a shower with her sleeping in our bed. When I came out of the bathroom she looked at me, covered her mouth, and then proceeded to throw up everywhere. We are thinking she was sick from her weekly dose of methotrexate the night before. She has never thrown up with it before but, there are always curve balls during therapy.

The whole family went to Scarlett’s appointment today. Child Life asked Scarlett if she wanted to show Tate and Evie again how Chemo Duck gets his butterfly. She gave Scarlett Chemo Duck and the box of supplies and left the room for a few minutes. I watched Scarlett open the alcohol wipe, clean Chemo Duck’s chest, use the sponge to clean more, poke the “needle” in the port, put the pillows under, tape the spiders on, attach the syringe, pull the plunger to draw up the blood…every step in the correct order and done perfectly. I don’t know whether to be incredibly proud of her or incredibly sad that my three-year-old can access a port better than I could.

Scarlett’s labs were excellent today. Her Hgb was 11.9 (goal of 12), platelets 231, and ANC 1275 (goal 1000-1500). It seems that her body really needed that dose decrease. This month we will increase her methotrexate by 50% and see how she does next month. Hopefully, after her next appointment, we can increase her 6-MP also. But, all in all, today was a good day.

We brought all of the kids today for a couple of reasons. This is probably the last time that Tate will be able to go to an appointment for quite a while. We like to bring him every now and then so that he can get any questions answered and have the opportunity to see exactly what is going on with Scarlett. We also wanted them to be the ones to give our first package. We want the kids to watch us do this every month, help us choose some of the things that we give, and hopefully do a couple themselves in a few years. We spoke with Child Life and asked them to help us by – without giving us anything specific about the patient – to help us design packages specific to them. They were very excited about this idea and gave us a list of five children that “needed” a gift. This made me very sad to hear the word “need” because I don’t think that, not a single day since diagnosis, we ever needed anything to lift our spirits. I am very excited that we have the opportunity to make some children feel better in some small way.

Again, if you are interested in more information about our goals, please message me. If you would like to help, message me. Our next child is a boy, Packer lover, interested in Legos, pirates and board games. I am super excited about this package and can’t wait to get started. I think this project will make the 28 days between appointments go very quickly.