In the past 48 hours, Dayssi has become increasingly expert and even chipper about taking her yucky medicine (we mix it in yogurt and she takes it with a smile, even as she shudders at the aftertaste). When she gets a really yucky spoonful we both shout "YUCKY!!!" and then we laugh. She seems to feel relatively well, if easily exhausted, and we are grateful for every day that she is not uncomfortable.
The most notable side effect at this point, attributable to the steroids, is Dayssi's insatiable hunger. Dayssi wakes up each morning with one thing on her mind. "Can I have some breakfast?" The urgency, and the specificity of her cravings, reminds us of me when I was pregnant. Can you imagine having a 2 1/2 year-old pregnant person in your house? Sitting at the breakfast table, waiting for her toast, she'll ask in rapid succession "Can I have a corn dog? Can I have some beef? Do we have any beef? Can I have some pretzels?" While the corn dog is cooking, every 60 seconds, "Is my corn dog ready? Can I have my corn dog?" Today she tried it with mustard and announced "Ummmm. I like the mustard. It's a little spicy. Can I have some more mustard? And ketchup too!" She'll eat 3 pieces of whole wheat toast with cream cheese without blinking at breakfast time. And she's ready for snack 2 hours later. It is nice to have a side effect that we can smile about.
As there has been relatively little physical trauma since the tests on Tuesday, we are starting to see some emotional fall out. India has had a very rough week emotionally. What she is expressing, very clearly, is jealousy and anger about what she sees as Dayssi's special treatment. We actually had a few tantrums this week -- unheard of in our previous life with India -- one of which culminated in her sobbing "It's not fair!!" over and over again. Hearing her say what we are all feeling was a little cathartic for everyone. We've talked a lot with India about what is happening this week, and we've tried to give her some extra special treatment too, like as much one-on-one time as we can manage, and playdates with her very closest friends. Yesterday we took her to the Build-a_Bear workshop and she made herself a friend, Sarah, and she has been totally absorbed with caring for this stuffed kitty every since: bathing her, putting her to bed, reading her books and kissing her on the head It all seems to be helping. Now of course we occasionally hear the same complaint "It's not fair" from Dayssi, about India's special treatment. But at least it is going in both directions.
Jim and I continue to feel strong and determined to beat this thing. We have our moments of sadness and feeling overwhelmed by the emotional endurance this 2+ years of treatment (we hope!) is going to require. But we are continually bouyed up by our incredible friends and colleagues, who have found ways to reach us that we could have never imagined. Meals are delivered to us every night, bright blankets and pillow cases for the bed while we were in the hospital, countless toys and treats for the girls, relentless phone calls and emails, even when they go unanswered, efforts to help us find the best possible situation for India in kindergarten next year, and attempts (not always successful) to kidnap the grown-ups for a mini-break once in a while.
From the bottom of our hearts, thank you thank you thank you. Please stay close.
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