Had an MRI today. I woke up early again when my husband Thomas got up for work because I couldn't sleep. Still so much worry. Waiting for test results has been almost unbearable. Luckily, I was watching my sweet niece today who is almost Avery's age and that really helped keep my mind off of things. I was a hard morning anyway because I couldn't feed Avery before her MRI. It's awful when she's crying and wanting a banana and I can't give it to her. I can't explain to her why I'm doing it either.
About an hour before we were supposed to leave I got a phone call from one of the doctors saying they got the biopsy results back. Avery has been misdiagnosed. She has langerhans cell hystiocytosis. The doctors are shocked that this is her diagnosis because of how destructive and fast growing the tumor on her head has been. This could be very good news because of two reasons. The recovery rate is about 10% higher and it takes lesser doses of chemo and radiation to treat. Treatment will still last about a year, but she will be able to take steroids at home for part of her treatment. We don't know yet what types of side effects she will or won't have.
The downside to this diagnosis is that it can be more dangerous then some cancers in that it sometimes affects vital organs. Avery will be getting more tests this week to make sure her kidneys and liver are working fine and that she doesn't have more tumors on her legs - since these type of tumors grow on the long bones of the body. Doctor says that if her organs work fine she will have "out patient" treatment. We are praying that no organs have been affected and that we caught this early enough so no other tumors have had the chance to grow.
After hearing the news I was in shock. I still am. I'm not sure if I should jump up and down or feel even more worried. Her MRI went horribly. Both of her hands had been bruised from IV's so she had to get one in her wrist. The vein was much deeper and it hurt her so much. I don't think she's ever cried like that. It was the most awful feeling having to hold her while they were putting it in. Even after the MRI she woke up earlier then she was supposed to. She was so confused and upset and she was inconsolable for over an hour.
She has been so strong through everything else that I guess I unconsciously began to expect she'd be that way through the entire process. It was so hard seeing her cry like that. How could I just sit there when everything in my being told me to take her away and protect her? I don't think these things will ever get easier. She is so innocent it just seems so unfair that she has to go through this. I'm praying that she doesn't have more tumors. I'm praying that her organs haven't been affected. I am now praying that I can be strong for her.
About an hour before we were supposed to leave I got a phone call from one of the doctors saying they got the biopsy results back. Avery has been misdiagnosed. She has langerhans cell hystiocytosis. The doctors are shocked that this is her diagnosis because of how destructive and fast growing the tumor on her head has been. This could be very good news because of two reasons. The recovery rate is about 10% higher and it takes lesser doses of chemo and radiation to treat. Treatment will still last about a year, but she will be able to take steroids at home for part of her treatment. We don't know yet what types of side effects she will or won't have.
The downside to this diagnosis is that it can be more dangerous then some cancers in that it sometimes affects vital organs. Avery will be getting more tests this week to make sure her kidneys and liver are working fine and that she doesn't have more tumors on her legs - since these type of tumors grow on the long bones of the body. Doctor says that if her organs work fine she will have "out patient" treatment. We are praying that no organs have been affected and that we caught this early enough so no other tumors have had the chance to grow.
After hearing the news I was in shock. I still am. I'm not sure if I should jump up and down or feel even more worried. Her MRI went horribly. Both of her hands had been bruised from IV's so she had to get one in her wrist. The vein was much deeper and it hurt her so much. I don't think she's ever cried like that. It was the most awful feeling having to hold her while they were putting it in. Even after the MRI she woke up earlier then she was supposed to. She was so confused and upset and she was inconsolable for over an hour.
Avery and her dad before the MRI
Photo taken of Avery right before she was awake from her sedation
You are such a great mom. And Avery is a tough kid. You will get her through this. Hang in there! We love you guys!
ReplyDeleteYou are strong. I can already see how courageous you are. We'll get through this.
ReplyDeleteLove you.
We are praying and will fast as a family this Sunday. She is a strong little girl. She won't have any memory of this, try to remember that when it seems unbearable. You are strong Kristen, I admire your faith. Love you guys!
ReplyDeleteI love you Kristen! I am praying for you and your sweet family! I had no idea you and your family have been faced with this challenge. Avery is so sweet and little, this breaks my heart! You are truly amazing for your strength! Know that Avery & you are in our thoughts and prayers. & we love you! Love BryAnn & Family.
ReplyDeletePraying with all my heart for Avery, you and your entire family! So sorry you have to watch her go through all of this!
ReplyDeleteHugs,
Lindsey Vavra