Feb 29, 2016
I had someone reach out to me today. Her name is Heather and her daughter, Alicia, is fighting the same battle Maya is fighting. My cousin, Tami, got me in touch with her on Facebook and she actually messaged me today. Check out Alicia’s Hope if you have some time; she could use some love and prayers too. From what I understand, Alicia was diagnosed on February 7th…Lincoln’s birthday…then discharged on Thursday (the day after we got home). Her message today came at a perfect time as Scott and I have been a little concerned about Maya.
I mean…well…shit right? Of course we are concerned but today, I guess, we were wondering if what Maya was experiencing was “normal” or “expected”. She appears to be uncomfortable most of the time, she doesn’t really engage in anything, she isn’t interested in the things she usually is…like Frozen, her belly is really distended…like really bad…imagine my belly at 8 months preggo, she needs major encouragement for walking up or down stairs…and actually walking anywhere, she sometimes finds some interest in wanting to lay down in the play room to watch Linco play but hasn’t played in a couple days, she doesn’t want to send any video messages, she isn’t interested in pictures, she wakes up starving, her cheeks are starting to swell into “moon face”, her hair appears to be thinning though I can’t find it anywhere…and omg is she drinking enough fluids????
We don’t have a specific doctor here in town (though I really wish we could just call our amazingly-awesome-so-happy-to-have-her-cause-our-daughter-is-gonna-be-okay-because-of-her pediatrician) and are supposed to call Children’s Hospital Oakland for any questions or emergencies. While we felt a little strange calling today since Maya was actually doing okay and didn’t have a fever…we are those parents so we did. Scotty called and didn’t talk about all of the concerns mentioned above but he did talk about our main concerns (lack of drinking, overall mood, and belly distention). The doctor was really kind and listened to Scott. She was a Fellow that we had not met before but reassured him that it sounds like somewhat expected behavior and symptoms. Of course we are watching her closely but it still makes us uneasy to see her like this. The doctor gave us comfort and told us to call with ANY questions or even if “we just need to talk”.
Back to my new friend, Heather. She reached out to me today to ask how our transition home has been. She mentioned her concerns of Alicia being withdrawn, talking very little, and not being herself. Alicia has a twin sister who is having a very hard time with her behavior. She also has a big 6 year old brother that is missing her too. It broke my heart to hear this but it made me feel like we aren’t alone. It helps to hear a doctor tell us that this type of behavior “has been seen” while on decadron but it helps even more to know that Maya isn’t the only one.
I wrote back to Heather and this is what I wrote: I can tell she is depressed and the only smiles we see are rare (though I think there is something sweet about them since only baby brother has gotten her to smile). Her belly is very distended and I can tell she’s uncomfortable. Her appetite is great (phew!) but I’m really having to encourage fluids. I’m so scared of hard poop!!! I’m also fearful of atrophy in the muscles since she hardly ever wants to walk or play. Breaking my heart! My husband, Scott, actually called the children’s hospital today because we have been so concerned. We felt weird about calling at first since she doesn’t have a fever but…well we just needed some reassurance I think. From what we understand…this can be normal. We try to talk her into reading but really monsters Inc, Diego, Land before time are constantly running. She doesn’t even want to watch Frozen!!! It makes me scared because that is all she wanted in the hospital! I hope that after the first month of decadron they will bounce back. I’m so sorry to hear that Alicia is feeling the same. I also miss my sweet sassy lil dragon.Oh…and her cheeks are starting to swell and hair is already thinning a little. I feel like the hair loss is superficial compared to all the other things she has to go though but…she just got her hair. And she really likes it. Breaks my heart.”
I hate to say that I know another little 3 year old going through the same thing…I hate it. But among my hate I feel strength…I have faith that Maya is building her Dragon’s Army and maybe…just maybe..she can give some strength to Alicia too. Maya the Dragon Princess might have an ally and another Dragon to go to battle with. Maya’s prognosis is good. Its great. I keep telling myself that. But reality is it will take a marathon to get her there. If I can find another little girl that makes Maya feel “normal”..or “special”…then I will find courage to continue to fight next to her. She is my power. She is my fire. She is my health. Love is Life.