Apr 21, 2016 11:55pm (Sara)
A motherly assessment:
These are all good numbers (for her) and will have to sustain our curiosity for the next 10 days. Her WBC are dropping again but we have been warned this will happen. After all leukemia is a wolf dressed in a sheep’s suit waiting to attack again. It is unfortunate we must sacrifice the heathy ones to protect the rest of the den.
A new concern has come up…her liver function tests. If anyone has ever had a metabolic panel, they are the ALT and AST values. Maya’s were mildly elevated for a long while since chemo and steroids tend to increase them. They resolved and were normal for a while. Today’s labs really freaked me out…I’m not gonna lie. They have definitely trended up (and by trend I more mean spiked) and the ratio of the values seriously look like a patient with drug induced hepatitis…which I guess it sort of is.
The doctor will continue to monitor her liver function (though not nearly as closely as I’d like – if I could get daily lab draws again without having to get her poked I would!). In the past, the doctors have reassured me that this is not permanent. That no scare tissue will form and she’ll have a normal liver again…but man, I really think there might be some bliss in ignorance.
In other realms of Maya’s wellness: her appetite is back to normal. The very typical preschooler appetite and as variable as it was when she wasn’t sick. She definitely has some favorites but she will endure what ever we ask her to eat. Tonight it was broccoli. She used to love it…now she will eat it only because she wants to eat another string cheese.
She is feeling great. The side effects are a little different than I expected. We all know what induction was like…thank the Gods that is over. As Scotty mentioned, now we have new ones and perhaps even old ones that are just now making themselves known. Her hair, of course, has been thinning and after today’s dose of vincristine we’ll see how many follicles were in the process of building. Such is life, it’s all about cycles and whatever hair was in the of “growth” cycle versus the resting phasecwill fall out. I have found that her hair loss comes pretty immediate after an infusion. We will begin to see some fall tomorrow (probably) and depending on how much will fall…it will be a solid 4-5 days of heavier depletion. Then it usually subsides…till the next infusion.
Her body looks to be getting back to normal. She is down another several ounces. Now she is 37.5 lbs. This is still up a good 5lbs from her baseline before diagnosis but at least she is feeling better. She has some serious “holiday cheer” but at least she isn’t dropping it too fast. Over the course of the next three years, I want to make sure she sustains her appropriate growth and development. As someone who measures and assesses little kids’ growth and nutrition for a living, it has been hard seeing drastic changes. Up or down we rather see trends…you can more easily change the course of a trend.
Other issues of course have surprised us. You might imagine what can (and does) get irritated while “peeing out chemo”. I’m just so grateful for the fact she is not in diapers…I don’t know what I would do. Her poor peep.
All in all we are heading into this phase strong and calm. I had to ask her to skip and chasse (a ballet move) for Dr. Salo today. Doc was very impressed.
I have so many tools and resources that I feel confident that we will keep our Dragon strong. As long as we keep her strong now, the red devil will look like a dull flash light compared to our Dragon’s breath. Her flight is fierce. She is beautiful and while her parents can be a little more uneasy at times, Maya is unwavering. She has bounced back impressively and ferociously.
Thank you for the love and support. I enjoy seeing Maya’s bracelets on surprising wrists. We love you. Love is life.