Tessa had an MRI of her small intestine last Saturday, and of course they did not see anything. Sigh. I still can't decide if it's good news or bad news when they come back with nothing. But that's already old news.
Today we drove back up to Stanford and spent another day at the hospital. Tessa got some repeat x-rays to check on the progress in her bones. It doesn't appear that they are getting better or really worse. She also had labs drawn. We were primarily looking for her hemoglobin levels, as last week it seemed they had dropped way down. We were expecting that Tessa was going to need another transfusion this weekend. Instead her hemoglobin levels came back a little higher than last week, but still lower than the week before so we're not in the red. Instead what was found was astronomical white blood cell levels.
An increase in the white blood cells is expected when taking steroids. A normal white blood cell count is between 4500 and 10,000. You can expect a count in the 20,000s when you add steroids to the picture. Tessa's count came back at 76,000. The doctor is very concerned and has ordered another bone marrow aspiration and biopsy for tomorrow. They are looking for leukemia again.
Every time you think you have begun to accept the way things are, they change again. I had finally established a routine and began believing I could live day to day and create a life for Tessa. And then it all falls apart again. The rage is visceral. It is like a snake in my belly weaving an intangible web. My impotence leaves me weak, and I just want to scream at someone. I look at the swollen face and body of my baby and my heart breaks again. Every time someone tells me how good she looks I want to shake them and yell "Her skin in stretched tight over her bloated body because of the horrible medications she has to take!!!" How can you move through the stages of grief when new things keep happening to fling you right back to the beginning?
My poor baby. I don't even know what to pray for anymore.
Thursday, September 27, 2012
Friday, September 21, 2012
MRI Prep
Tessa and I stayed home yesterday and kept the couch company. She woke up a little congested and the pain in her tummy seemed more intense. We decided to camp out and take a rest day. A little morphine later we were in pretty good shape.
I have been fighting back the anxiety of what was going to happen during the placement of the NJ tube. This tube is very thin (think strand of spaghetti) and is generally used as a feeding tube. It is threaded up the nose, down the throat, through the stomach to the jejunum (the small bowel). Tessa was to be awake for this procedure and I was having nightmares about restrains and screaming. But she is such an incredible kid. She lay on a table with Casey and I at her head holding her hands, there was a nurse at her feet, the doctor at her side and a huge fluoroscopy machine over her to help the doctor guide the tube. She was terrified but incredible. The doctor threaded the tube into her nose, but Tessa held so still that we were there more for comfort than restraint. It took about 15 minutes, during which time Tessa cried and the doctor threaded this looooooong tube down into her, pulling a little out, pushing it back in over and over to get it right. It was bad, but not as horrible as I thought it was going to be.
So we are now safely ensconced at Noni and Papa's house keeping a different couch company. I am so relieved that it's over and that the tube is not bothering her too much. We are headed in for the MRI tomorrow morning, and depending on how she feels after she wakes up we may head home directly.
It is so easy to get lost in what is happening to Tessa. Our world has narrowed drastically, and I have forgotten that we are not the only ones who are suffering. When you mention us in your prayers please add one for our dear friend Edna Tobias. She is on of Casey's closest friends' mom. She is battling with lung cancer. Though I have never had the pleasure of meeting her, Casey talks about her with such affection and respect. Keep Edna and her family in your hearts as they move through their own dark hour.
Thank you to everyone for their love and support. A special shout out to Sandy and Don Woolley who are amazing friends and neighbors for keeping our home and chickens safe, and for their constant support.
I have been fighting back the anxiety of what was going to happen during the placement of the NJ tube. This tube is very thin (think strand of spaghetti) and is generally used as a feeding tube. It is threaded up the nose, down the throat, through the stomach to the jejunum (the small bowel). Tessa was to be awake for this procedure and I was having nightmares about restrains and screaming. But she is such an incredible kid. She lay on a table with Casey and I at her head holding her hands, there was a nurse at her feet, the doctor at her side and a huge fluoroscopy machine over her to help the doctor guide the tube. She was terrified but incredible. The doctor threaded the tube into her nose, but Tessa held so still that we were there more for comfort than restraint. It took about 15 minutes, during which time Tessa cried and the doctor threaded this looooooong tube down into her, pulling a little out, pushing it back in over and over to get it right. It was bad, but not as horrible as I thought it was going to be.
So we are now safely ensconced at Noni and Papa's house keeping a different couch company. I am so relieved that it's over and that the tube is not bothering her too much. We are headed in for the MRI tomorrow morning, and depending on how she feels after she wakes up we may head home directly.
It is so easy to get lost in what is happening to Tessa. Our world has narrowed drastically, and I have forgotten that we are not the only ones who are suffering. When you mention us in your prayers please add one for our dear friend Edna Tobias. She is on of Casey's closest friends' mom. She is battling with lung cancer. Though I have never had the pleasure of meeting her, Casey talks about her with such affection and respect. Keep Edna and her family in your hearts as they move through their own dark hour.
Thank you to everyone for their love and support. A special shout out to Sandy and Don Woolley who are amazing friends and neighbors for keeping our home and chickens safe, and for their constant support.
Tuesday, September 18, 2012
Leave of Absence
No matter where you go, there you are. I am practicing the art of acceptance (though I'm still at the apprentice stage). At this point in time Tessa's bone pain is being controlled with a cocktail of methadone, indomethacine, and prednisone. Her inflammation rates have dropped tremendously as a result of the steroid, and for that we are grateful. She moves well, though she is not inclined to run and jump. At the forefront on her symptoms is her tummy pain, which is constant and inexplicable. Her biopsies from her upper and lower GI procedures came back normal, which is of course great except for the fact that it doesn't provide any answers. She was put on a new medication last week, cyproheptadine, which is for unexplained stomach pain but takes several weeks to begin working. With the exception of our weekly trips up to Stanford we have been home for a week and a half. Tessa has become a bit of a barnacle in that she follows me even if I move just a few feet away. However, I find that I don't mind the way that my life is consumed by her. If my presents gives her a sense of security I will super-glue her to my chest and move on. The steroids have left her ravenous. The little girl that I would bribe to eat a few bites with a song and dance has been replaced by a child who wants to eat every moment of the day. My new challenge is how to moderate her food intake while not having her feel restricted. I feel like we have covered most ends of the spectrum with this parenting experience. The prednisone has also left her puffy and swollen, though I find myself torn between anger at drug side effects and wanting to suck on her sweet little cheeks.
Casey and I have decided that with all that Tessa has been through, the after-effects of the trauma and the incredibly high level of anxiety that she is feeling, it would not be fair to drop her off at a preschool and wave goodbye. I am working on playdates and going to check out some Mommy and Me type classes where she will have the social interactions and opportunities, but where I can still be available for support. So at present my challenge is creating routines so she can learn to feel safe again, be available to her when she needs me (i.e. at all times), and nutritional regulation.
We are headed back to Stanford on Friday. The plan, as of this late hour, is that she will be admitted to the hospital overnight on Friday. On Saturday they will be performing a specialized MRI on her small intestine where they will actually we able to view the movement of the intestine. The procedure is tricky because she has to be sedated, but she also has to have this oral contrast. Anesthesiologists do not want you to have ANYTHING in your tummy to reduce the risk of aspiration. As of yet, my understanding is that there will be tubes down her nose, among other unpleasantness. I'm honestly trying not to think about it as every time I picture overnights in the hospital my stomach bottoms out and I am filled with dread. I can only imagine how she will react when the time comes to tell her we'll be spending the night. Sigh.
Thank you all for the ongoing support. It is a challenging balancing act trying to establish normalcy while dealing with all of this. Perhaps the hardest part as of late came last Friday in our meeting with the doctors. They told us that in all likely-hood there will not be a diagnosis. Rather this will be a very, very long process in which we will be going to Stanford for weekly visits; assessing her symptoms and responding appropriately. Until that moment I had been operating in a world where we were looking for a diagnosis. This was all temporary, and that eventually we would be able to start treatment. That looks heart wrenchingly remote right now. This is life. We must learn how to live this way and create a world where she can find joy. Even if she's in pain. Even if she is no longer the bubbly girl I once knew. Gratefully these changes in her have not shifted a thing in my heart. If anything I love her more. She is my champion. I have never met anyone in my life who has had to undergo such pain and fear. If I have to spend the rest of my life fighting for her I will.
Please continue to keep us in your thoughts and prayers.
Casey and I have decided that with all that Tessa has been through, the after-effects of the trauma and the incredibly high level of anxiety that she is feeling, it would not be fair to drop her off at a preschool and wave goodbye. I am working on playdates and going to check out some Mommy and Me type classes where she will have the social interactions and opportunities, but where I can still be available for support. So at present my challenge is creating routines so she can learn to feel safe again, be available to her when she needs me (i.e. at all times), and nutritional regulation.
We are headed back to Stanford on Friday. The plan, as of this late hour, is that she will be admitted to the hospital overnight on Friday. On Saturday they will be performing a specialized MRI on her small intestine where they will actually we able to view the movement of the intestine. The procedure is tricky because she has to be sedated, but she also has to have this oral contrast. Anesthesiologists do not want you to have ANYTHING in your tummy to reduce the risk of aspiration. As of yet, my understanding is that there will be tubes down her nose, among other unpleasantness. I'm honestly trying not to think about it as every time I picture overnights in the hospital my stomach bottoms out and I am filled with dread. I can only imagine how she will react when the time comes to tell her we'll be spending the night. Sigh.
Thank you all for the ongoing support. It is a challenging balancing act trying to establish normalcy while dealing with all of this. Perhaps the hardest part as of late came last Friday in our meeting with the doctors. They told us that in all likely-hood there will not be a diagnosis. Rather this will be a very, very long process in which we will be going to Stanford for weekly visits; assessing her symptoms and responding appropriately. Until that moment I had been operating in a world where we were looking for a diagnosis. This was all temporary, and that eventually we would be able to start treatment. That looks heart wrenchingly remote right now. This is life. We must learn how to live this way and create a world where she can find joy. Even if she's in pain. Even if she is no longer the bubbly girl I once knew. Gratefully these changes in her have not shifted a thing in my heart. If anything I love her more. She is my champion. I have never met anyone in my life who has had to undergo such pain and fear. If I have to spend the rest of my life fighting for her I will.
Please continue to keep us in your thoughts and prayers.
Thursday, September 6, 2012
Up We Go
In case you hadn't noticed yet, everything can change on a dime. Yesterday it felt like someone had shopvac-ed the joy out of me through my chest. Today I feel so thrilled because we arrived back in SLO a few hours ago. We will only be here til early next week, but Tessa and I haven't been home in over a month and it is GOOD TO BE BACK!
We went into the doctor this morning, and while there were no diagnostic miracles there was some new information. Her blood tests show that her hemoglobin levels are staying strong, which is great. However, she has high vitamin D levels. There are two different kinds of vitamin D, the kind you ingest and the kind your body produces. Her body appears to be overproducing this vitamin D which can mean a couple of things: a malignancy or some weird variant on an inflammatory disease. Great. We will be going back up to Stanford early next week for a specialized MRI that can actually scan motion. They'll look at her small intestine to see if they can find anything there.
So...living the dream ladies and gentelmen!
We went into the doctor this morning, and while there were no diagnostic miracles there was some new information. Her blood tests show that her hemoglobin levels are staying strong, which is great. However, she has high vitamin D levels. There are two different kinds of vitamin D, the kind you ingest and the kind your body produces. Her body appears to be overproducing this vitamin D which can mean a couple of things: a malignancy or some weird variant on an inflammatory disease. Great. We will be going back up to Stanford early next week for a specialized MRI that can actually scan motion. They'll look at her small intestine to see if they can find anything there.
So...living the dream ladies and gentelmen!
Wednesday, September 5, 2012
Hold On
I feel like I'm slipping away from myself. Gravity has become null and whatever it was that had tethered me to reality is disintegrating. I'm watching our lives through a film of disbelief and agony that I can't quite wipe clean. Tessa had responded so well to the steroids. She was running around and smiling, laughing and alive! Then two nights ago her toe started to hurt again. Casey and I tried to brush it off, saying it didn't mean anything, but fear blossomed deep in my heart. The next night she needed morphine again for the first time in over a week. And then last night we all sat up for hours holding her as she cried. The pain in back in her knees and toes. As I look at her eyes, glazed over from the morphine, I want to scream and weep. It feels as though the delicate fabric of hope that we had begun to piece together with each day that she was able to run and smile has been torn from beneath us. My spirit is in tatters. How long can a person endure so much? Watching the tears roll down my baby's cheeks, the cries that go on so long they begin to crowd out anything else in your head, each one searing it's way across your brain. You endure it as long as you have to. My girl. My beautiful tortured girl. Someone please save her.
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