Interim Maintenance Day 6: 4 Month Cancerversary

I can’t believe it has been four months since Scarlett was diagnosed. I remember moments from that day like it was yesterday. Other moments have always been a blur. It seems like these four months flown by but also feels like it’s been years. A third of Scarlett’s third year of life has been scarred by this awful disease. It is a year that we will never get back. It makes me so angry to think of all the things that we aren’t experiencing. It feels like so much of her day is spent being crabby. And who wouldn’t be? She is nauseous, tired, sick and just plain angry about it.

Scarlett came home from the hospital yesterday. She did pretty well this round. She was admitted Wednesday afternoon. They started to hydrate her right away. On Thursday, she had a lumbar puncture with intrathecal methotrexate. Her fluid was clear so her leukemia has not spread to her spinal fluid. She was then started on her high dose methotrexate for 23 hours. She also received vincristine on Thursday. She then had three doses of leukovorin on Friday and Saturday. This will be repeated every other week for three more cycles. The only difference is that the second and fourth cycles will not have the LP.

The high dose methotrexate is very hard on the kidneys so Scarlett has to remain on intense hydration until her body clears the drug. She did a good job doing this and had cleared the methotrexate by Saturday afternoon. Hopefully her body can keep this up. She does seem to have a pretty quick metabolism as you can see from her pre-cancer thinness! The methotrexate must feel pretty strange though. Her doctors warned Brock that she may just act “different” during the infusion. This was repeated by other cancer patients that we spoke with. And it was very true. She was very quiet, withdrawn and didn’t make much eye contact during those two days. It was very difficult to see her that way, especially since I only saw her over Skype that day. It’s always easier when I see her in person.

Another side effect that we have to watch for is GI sores. We were taught how to clean her mouth from day 1 of diagnosis. She didn’t mind it in the beginning but it has gotten old for her now. I will admit that we got a little lazy with it but are returning to our strict routine again. She screams and cries when we have to do it sometimes (but that also makes it a little easier to get the swab in her mouth). I will do whatever it takes to prevent those sores as much as possible. I have seen pictures and heard stories of how awful they can be. They can get so bad that some children need to be hospitalized for nutritional support because they can’t swallow (even their own saliva sometimes). The sores can be anywhere in the GI tract, from the lips to the bottom. She already has a white spot that we are watching on her lip, chapped and bleeding lips and a very sore bottom. For a child with very very sensitive skin, she will need a lot of luck to make it through this side effect.

Despite all of this scary stuff, Scarlett is still a happy girl for most of the day. She laughs with her sister, watches movies, snuggles, enjoys picking Tate up from school…We really try to keep her days as normal as possible. I wonder how long term her memory is at this age and whether she remember life “before”. Either way, she is a survivor and she is kicking cancer’s butt one day at a time.