Lily
It has been nearly three years since I last had the courage to post. The original purpose of this blog, to detail our lives as we lived overseas, faded when we returned to the US. Once home, I couldn't bring myself to post, not with any integrity. Everything I wrote once home went through a filter of self protection before I published. I worried more about offending or upsetting someone by my post than being honest and sharing, so, I quit. I focused instead on my schooling, work, etc. I've missed this blog. Writing it became therapeutic to me. I've never been to confessional in a church, but I imagine that the way I feel after writing and sharing is much the same as one feels after confessional. There is an unburdening, a lightness. I still feel the weight of my words and thoughts, but much less so knowing that they are being carried by many and no longer mine alone.
I can't honestly say that this post will be the first of many. It may be the first and only. My world feels heavy right now and the one clear voice I hear is the one telling me to share. I wonder if sharing will lead to answers. If not answers, maybe solace. Jason and I have only shared select details with a few people. We haven't wanted to cause undue concern, but we are now exhausted. And worried. And just looking for answers, love. and maybe a little miracle.
For nearly two years, Lily (now 15) has not felt well. Her symptoms all seemed related to her awful menstrual cycles and after some pushing, we were able to get some testing. She was diagnosed with PCOS. We ran with that, realizing she was only showing a few of the many symptoms, and treated her. She didn't get any better. In fact, she got worse. Nearly two years of exhaustion, aches, pains, and horrific cycles. We believed that it was all PCOS. As a woman that has lived through awful woman issues, I pushed Lily. I encouraged her to just work through the pain, let it make her stronger, and use it rather than let it cripple her. She wanted nothing more that to be an amazing student and athlete, so all my encouragement pushed her to ignore her body and go for it. She did. Lily complained occasionally, but mostly worked her ass off. She has maintained amazing grades, lettered in her sport, and showed great improvement from the beginning of the season to the end.
A couple months ago, her season ended and I sought further help from the doctor. She was just not getting any better. Lily was so wiped out, she would sit and do homework, crying out of exhaustion. She was profoundly tired. Her body hurt, her heart was racing and cramping, she was always nauseous, and her cycles had reached new highs of over 25 days of bleeding along with immense pain. Everything the doctor attempted to do to help didn't work. Our doctor referred us on to someone more specialized. The new doctor ran a gamut of blood work and in late November told us that whatever Lily is dealing with is more than she and her partner were comfortable treating. They referred us to a hematology and oncology office. Unfortunately, the local doctors will not see Lily because she is under 18. We will be traveling to Children's Hospital in Seattle in a few days to see a children's hematologist/oncologist and are waiting for approval for an MRI.
We don't know a whole lot for certain. The tests indicate hypothyroidism and anemia (not caused by the bleeding or poor diet). Also, she has increased levels of prolactin which could be a result of the hypothyroidism or a growth on the pituitary gland (hence the MRI). The doctor we were seeing here is more concerned about the cause of the hypothyroidism than the hypothyroidism itself. She said some pretty scary things that we needed to prepare ourselves to possibly hear. I'm not even going there now. I'm not doing worst case scenario. I'm shooting for best - whatever that is. Lily has started thyroid meds and after 10 days was wrecked. She was a mess of tears and sleep. So, more meds are on board now but no change yet. It's only been a few days. Maybe in time, that little pill will be all the miracle we need.
I know that I need not even mention the unfairness of this all. I need not ask why my young daughter is having to deal with all of this. There isn't an answer, and if there were one, some cosmic justification, I would call BS on it. I don't know what is worse as a parent: the guilt over not figuring it out sooner and pushing her to work through it, the pain I feel watching her hurt, the worry I have over the possible outcomes, or the helplessness I feel as she sits, melting on the couch next to me - all her strength and emotional stability robbed.
I hope that I am expending all of this anxiety and worry for naught. I hope that there is a simple explanation for all of this and some little adjustment we can make to get her back to good. I hope that she's fine, better than fine. More than anything, I hope for that.
Thanks for reading this far. I'll keep you posted.
I can't honestly say that this post will be the first of many. It may be the first and only. My world feels heavy right now and the one clear voice I hear is the one telling me to share. I wonder if sharing will lead to answers. If not answers, maybe solace. Jason and I have only shared select details with a few people. We haven't wanted to cause undue concern, but we are now exhausted. And worried. And just looking for answers, love. and maybe a little miracle.
For nearly two years, Lily (now 15) has not felt well. Her symptoms all seemed related to her awful menstrual cycles and after some pushing, we were able to get some testing. She was diagnosed with PCOS. We ran with that, realizing she was only showing a few of the many symptoms, and treated her. She didn't get any better. In fact, she got worse. Nearly two years of exhaustion, aches, pains, and horrific cycles. We believed that it was all PCOS. As a woman that has lived through awful woman issues, I pushed Lily. I encouraged her to just work through the pain, let it make her stronger, and use it rather than let it cripple her. She wanted nothing more that to be an amazing student and athlete, so all my encouragement pushed her to ignore her body and go for it. She did. Lily complained occasionally, but mostly worked her ass off. She has maintained amazing grades, lettered in her sport, and showed great improvement from the beginning of the season to the end.
A couple months ago, her season ended and I sought further help from the doctor. She was just not getting any better. Lily was so wiped out, she would sit and do homework, crying out of exhaustion. She was profoundly tired. Her body hurt, her heart was racing and cramping, she was always nauseous, and her cycles had reached new highs of over 25 days of bleeding along with immense pain. Everything the doctor attempted to do to help didn't work. Our doctor referred us on to someone more specialized. The new doctor ran a gamut of blood work and in late November told us that whatever Lily is dealing with is more than she and her partner were comfortable treating. They referred us to a hematology and oncology office. Unfortunately, the local doctors will not see Lily because she is under 18. We will be traveling to Children's Hospital in Seattle in a few days to see a children's hematologist/oncologist and are waiting for approval for an MRI.
We don't know a whole lot for certain. The tests indicate hypothyroidism and anemia (not caused by the bleeding or poor diet). Also, she has increased levels of prolactin which could be a result of the hypothyroidism or a growth on the pituitary gland (hence the MRI). The doctor we were seeing here is more concerned about the cause of the hypothyroidism than the hypothyroidism itself. She said some pretty scary things that we needed to prepare ourselves to possibly hear. I'm not even going there now. I'm not doing worst case scenario. I'm shooting for best - whatever that is. Lily has started thyroid meds and after 10 days was wrecked. She was a mess of tears and sleep. So, more meds are on board now but no change yet. It's only been a few days. Maybe in time, that little pill will be all the miracle we need.
I know that I need not even mention the unfairness of this all. I need not ask why my young daughter is having to deal with all of this. There isn't an answer, and if there were one, some cosmic justification, I would call BS on it. I don't know what is worse as a parent: the guilt over not figuring it out sooner and pushing her to work through it, the pain I feel watching her hurt, the worry I have over the possible outcomes, or the helplessness I feel as she sits, melting on the couch next to me - all her strength and emotional stability robbed.
I hope that I am expending all of this anxiety and worry for naught. I hope that there is a simple explanation for all of this and some little adjustment we can make to get her back to good. I hope that she's fine, better than fine. More than anything, I hope for that.
Thanks for reading this far. I'll keep you posted.
Comments
Post a Comment