Thursday, March 26, 2009
CT Scan results
Julia's oncologist just came in to talk with us... the wonders of modern technology. They pulled up her CT on the computer by her bed. She has a large tumor on the bottom of her left kidney. Her liver, right kidney, spleen, and lungs are all clear- huge praise!!! The best case scenario would be that it were benign. The worst case would be Wilms tumor. They said it does not present like a classic Wilms because the larger bumps appear to possibly be cysts. (In this case after removal she would begin chemo. It is a highly treatable disease.) They definitely need to remove the kidney. The surgeons are looking at the scan this afternoon and will then talk to us. Surgery will either be Friday or first thing next week. She is in no danger right now, so they will decide on the best timing.
Julia's CT
The ride down to CT- she was pretty fascinated by the bed on wheels.....
Julia is out of her CT scan. They said they got good pictures. She didn't fight the sedation too much. They let me stay in the room and pray over her during the scan.
She is having a really hard time coming out of sedation and is screaming, combative, and inconsolable. Please pray for her to fall asleep soon and not to injure herself during this. We haven't seen the doctors yet today.
Julia is out of her CT scan. They said they got good pictures. She didn't fight the sedation too much. They let me stay in the room and pray over her during the scan.
She is having a really hard time coming out of sedation and is screaming, combative, and inconsolable. Please pray for her to fall asleep soon and not to injure herself during this. We haven't seen the doctors yet today.
Wednesday, March 25, 2009
A New Road
It is 9pm and I am sitting by Julia's bedside at Brenner's Children's Hopspital. This is not how I thought this day would go at all.
My morning started praying for Timothy and Stellan, whom God has done some amazing things for today. Julia had an appointment for an ultrasound and VCUG to check on the back-to-back UTIs she's had this month. Carter was being picked up by Emily to go to Bible study with his friends. I figured we all be home after lunch in time for nap and school. Not exactly...
They did Julia's ultrasound and when the tech finished she brought in a radiologist who repeated the scan. I could tell they were looking for something, but they said her kidney was hard to picture on one side. They sent us to the waiting room, then came out to say she didn't need the second, more invasive test. Part of me was relieved, but cautious. They sent us across the street to the pediatrician's office. When the doctor walked in, he told us they had found a tumor on her left side. He was on the phone with Brenner's to find out the plan. In seconds we were handed her chart, told to pick up her scan CD, and head to the 9th floor to be admitted to Brenner's oncology. It was a surreal moment. You hear it and I knew what they were saying, but when I walked out I felt my arms go weak. I put her in her carseat and stood in the rain and cried. This was really happening. I feel peace about her and this situation, I just ache for what she will now go through. It's a burden we carry as moms. We feel our kids pain for them.
I am so thankful for the ways I have already seen God's hand in this. After diagnosing her first ever UTI the doctor wanted to schedule the ultrasound and VCUG. I have to say I was hesitant to do something so involved for one infection. Can't we just wait. I seriously considered telling them 'no' when they called us to set it up. Last Friday she came to me and said her stomach hurt again and it hurt to pee. I took her in for what turned out to be her second UTI and the tests were scheduled on the spot. God gave me His definite answer. Had we not had the scan today this would not have been found. They didn't feel it in the exam and she is acting completely normal. But we did and we found it and now we're right where we need to be.
Billy and I packed all our things and headed to Brenner's this afternoon. They took us right in to her room and the doctor came in to talk to us. They wanted to repeat the ultrasound to explore more and take their own pictures. They explained to us what they were seeing. There is a round bumpy mass, 7cm wide, on her left kidney. They scheduled her for a full, sedated CT scan tomorrow of her chest andomen, and pelvis. This way they will have a complete picture to work with as they plan for likely surgery.
We have had complete peace since arriving here. It is an amazing place and I have total confidence in the medical care she receives, but more importantly- we have been completely covered in prayer by so many since literally the second we received the news. Intercessory prayer is a force you must feel to fully understand. We have been living in 'the zone' as I call it. There are no what ifs or worries, just right now. We color, we play, we eat, we watch our favorite shows- and we face things one step at a time. I have not shed a tear since we arrived. Thank you all! I know I need to do this for her and I couldn't do it woithout the love, support, and prayers from all of you.
Julia is comfortable and happy. She got to take a bath before they started the IV and was swimming and singing in the tub like always. It was really hard to get her out.
She has been so cooperative through it all, though. When they took her labs and started the IV she laid completely still with her arm out on the bed, never even flinched! The nurses couldn't believe it. They said they've never seen anything like it.
She is really enjoying the food in bed, coloring on her tray, and TV all in one place. Though tonight she said, "I don't really like going to the doctor. I'd rather be home with you and Daddy and Carter. But I love you Mommy. You're the best." (Okay maybe I did cry once tonight.) I never dreamed this morning that our day would go like this either. So far, we've told her she has a lump in her belly that shouldn't be there and the doctors are taking pictures to find out how to get it out. So far she seems okay with that. So please continue to pray for her comfort and reassurance during all of this. Pray for the scan tomorrow that they are able to see what they need to and make wise decisions. Pray for the sedation and process tomorrow.
Thank you we love you all and thank you for your love for our family!
My morning started praying for Timothy and Stellan, whom God has done some amazing things for today. Julia had an appointment for an ultrasound and VCUG to check on the back-to-back UTIs she's had this month. Carter was being picked up by Emily to go to Bible study with his friends. I figured we all be home after lunch in time for nap and school. Not exactly...
They did Julia's ultrasound and when the tech finished she brought in a radiologist who repeated the scan. I could tell they were looking for something, but they said her kidney was hard to picture on one side. They sent us to the waiting room, then came out to say she didn't need the second, more invasive test. Part of me was relieved, but cautious. They sent us across the street to the pediatrician's office. When the doctor walked in, he told us they had found a tumor on her left side. He was on the phone with Brenner's to find out the plan. In seconds we were handed her chart, told to pick up her scan CD, and head to the 9th floor to be admitted to Brenner's oncology. It was a surreal moment. You hear it and I knew what they were saying, but when I walked out I felt my arms go weak. I put her in her carseat and stood in the rain and cried. This was really happening. I feel peace about her and this situation, I just ache for what she will now go through. It's a burden we carry as moms. We feel our kids pain for them.
I am so thankful for the ways I have already seen God's hand in this. After diagnosing her first ever UTI the doctor wanted to schedule the ultrasound and VCUG. I have to say I was hesitant to do something so involved for one infection. Can't we just wait. I seriously considered telling them 'no' when they called us to set it up. Last Friday she came to me and said her stomach hurt again and it hurt to pee. I took her in for what turned out to be her second UTI and the tests were scheduled on the spot. God gave me His definite answer. Had we not had the scan today this would not have been found. They didn't feel it in the exam and she is acting completely normal. But we did and we found it and now we're right where we need to be.
Billy and I packed all our things and headed to Brenner's this afternoon. They took us right in to her room and the doctor came in to talk to us. They wanted to repeat the ultrasound to explore more and take their own pictures. They explained to us what they were seeing. There is a round bumpy mass, 7cm wide, on her left kidney. They scheduled her for a full, sedated CT scan tomorrow of her chest andomen, and pelvis. This way they will have a complete picture to work with as they plan for likely surgery.
We have had complete peace since arriving here. It is an amazing place and I have total confidence in the medical care she receives, but more importantly- we have been completely covered in prayer by so many since literally the second we received the news. Intercessory prayer is a force you must feel to fully understand. We have been living in 'the zone' as I call it. There are no what ifs or worries, just right now. We color, we play, we eat, we watch our favorite shows- and we face things one step at a time. I have not shed a tear since we arrived. Thank you all! I know I need to do this for her and I couldn't do it woithout the love, support, and prayers from all of you.
Julia is comfortable and happy. She got to take a bath before they started the IV and was swimming and singing in the tub like always. It was really hard to get her out. 
She has been so cooperative through it all, though. When they took her labs and started the IV she laid completely still with her arm out on the bed, never even flinched! The nurses couldn't believe it. They said they've never seen anything like it. 
She is really enjoying the food in bed, coloring on her tray, and TV all in one place. Though tonight she said, "I don't really like going to the doctor. I'd rather be home with you and Daddy and Carter. But I love you Mommy. You're the best." (Okay maybe I did cry once tonight.) I never dreamed this morning that our day would go like this either. So far, we've told her she has a lump in her belly that shouldn't be there and the doctors are taking pictures to find out how to get it out. So far she seems okay with that. So please continue to pray for her comfort and reassurance during all of this. Pray for the scan tomorrow that they are able to see what they need to and make wise decisions. Pray for the sedation and process tomorrow.Thank you we love you all and thank you for your love for our family!
Abide With Me
I have had lots of people asking recently how my recovery is going. (For those new to this... I was diagnosed with Graves' disease last October, had my thyroid removed in November, and am now riding the roller coaster of thyroid replacement meds.) I can finally say with more confidence that things are getting better. My diagnosis in itself was a huge blessing because my years of symptoms and the physical trials of this past year. We finally had an answer and it put so many pieces together. I finally felt listened to. My surgery went great and I felt almost immediate relief from the multitude of symptoms, like they had just been shut off. Things stayed that way through the holidays.
After Christmas, though, my levels tanked. No one told me to expect it to happen quite like this. As it turns out your thyroid releases hormones that control basically all your body's functions and these hormones stay in your blood for a month. So I did not feel the full effects of losing my thyroid until January. I felt a little more tired and lethargic, my digestive system slowed way down, I started gaining weight, and just felt generally blah. Then, suddenly, it was like being beat up and thrown in a pit. The lows hit hard. I felt like I was in a drugged state. I was exhausted, sleeping 15 hours a day, falling asleep sitting up, and twice while driving. I started to really get scared by it all. I felt unable to function, like I just couldn't will my body to do anything. It was a humbling feeling. After they tested my blood again and found out just how low my levels were they started to slowly increase it. They can only test and every 6 weeks because of the residual effects, so it was time to wait. So I just had to live in it and wait.
I really tried to focus on what God was teaching me through this. I've always felt like God gifted me with a pretty large dose of patience, but now it was being put to the test. I felt useless, I was short with my husband, my poor children didn't know what was happening, and I don't know when it would end. I told someone in conversation, "I feel like I'm getting the graduate course in patience and I probably don't want to know why right now. I trust God."
I also felt God showing me that I can depend fully on Him and not on my own strength. As believers, we know this, we say, it, we believe it, but how often to we fully trust it. Especially all you moms out there like me. We are the doers in our lives. We are always in motion helping, feeding, cleaning, loving, building, teaching, making, healing, fixing, moving, carrying.......but how often do we remember Whose strength is in our hands. It is not our own. He gets the glory for all things. I can do nothing apart from Him. We have to remember Our Source. It really taught me not to depend on how I felt each day, but to depend on God to give me what I needed and maybe nothing more, but that would be enough. It will always be enough. I felt God asking me who controlled my time. I was starting to feel like it was my agenda we were working on each day, but now I am recommitting my time to Him. Each day brings it's own needs and plans and I have to trust Him to determine our focus. Am I willing and open when I feel Him nudging my heart to call someone, help someone, stop to do something with my kids, totally change my plans for the day? Not only willing, but joyfully obedient? This is the essence of accomplishing His will for our lives while we're hear is being willing to walk with Him and change direction as it comes.
I was listening to the radio one night and they were talking about abiding and what it really means. The definition they were giving means 'to walk face to face". Imagine this with me. Are you walking facing Your Savior? I imagine myself walking backwards while looking into someone's face. This it was it is 'to abide'. In order to do this I have to.....
I am happy to say I am feeling better these past two weeks. The meds boost is taking affect and we are closer to normal range. But even if it hadn't change I would still be okay with it, because I trust His plan and His refining.
After Christmas, though, my levels tanked. No one told me to expect it to happen quite like this. As it turns out your thyroid releases hormones that control basically all your body's functions and these hormones stay in your blood for a month. So I did not feel the full effects of losing my thyroid until January. I felt a little more tired and lethargic, my digestive system slowed way down, I started gaining weight, and just felt generally blah. Then, suddenly, it was like being beat up and thrown in a pit. The lows hit hard. I felt like I was in a drugged state. I was exhausted, sleeping 15 hours a day, falling asleep sitting up, and twice while driving. I started to really get scared by it all. I felt unable to function, like I just couldn't will my body to do anything. It was a humbling feeling. After they tested my blood again and found out just how low my levels were they started to slowly increase it. They can only test and every 6 weeks because of the residual effects, so it was time to wait. So I just had to live in it and wait.
I really tried to focus on what God was teaching me through this. I've always felt like God gifted me with a pretty large dose of patience, but now it was being put to the test. I felt useless, I was short with my husband, my poor children didn't know what was happening, and I don't know when it would end. I told someone in conversation, "I feel like I'm getting the graduate course in patience and I probably don't want to know why right now. I trust God."
I also felt God showing me that I can depend fully on Him and not on my own strength. As believers, we know this, we say, it, we believe it, but how often to we fully trust it. Especially all you moms out there like me. We are the doers in our lives. We are always in motion helping, feeding, cleaning, loving, building, teaching, making, healing, fixing, moving, carrying.......but how often do we remember Whose strength is in our hands. It is not our own. He gets the glory for all things. I can do nothing apart from Him. We have to remember Our Source. It really taught me not to depend on how I felt each day, but to depend on God to give me what I needed and maybe nothing more, but that would be enough. It will always be enough. I felt God asking me who controlled my time. I was starting to feel like it was my agenda we were working on each day, but now I am recommitting my time to Him. Each day brings it's own needs and plans and I have to trust Him to determine our focus. Am I willing and open when I feel Him nudging my heart to call someone, help someone, stop to do something with my kids, totally change my plans for the day? Not only willing, but joyfully obedient? This is the essence of accomplishing His will for our lives while we're hear is being willing to walk with Him and change direction as it comes.
I was listening to the radio one night and they were talking about abiding and what it really means. The definition they were giving means 'to walk face to face". Imagine this with me. Are you walking facing Your Savior? I imagine myself walking backwards while looking into someone's face. This it was it is 'to abide'. In order to do this I have to.....
- trust that He knows where we're going
- look only toward God and not compare my life to those around me
- know Him intimately and talk to Him constantly
- reflect His glory in my eyes
- walk with confidence, knowing he sees exactly what lies ahead
I am happy to say I am feeling better these past two weeks. The meds boost is taking affect and we are closer to normal range. But even if it hadn't change I would still be okay with it, because I trust His plan and His refining.
Tuesday, March 24, 2009
Teaching Tray Tuesday
I was curious what the kids would think of this one. We bought the funnels on our most recent trip to IKEA and Carter has been begging to use them. I took 4 empty glass baby food jars (same size). Then I cut a piece of electrical tape into strips and marked off fill lines at varying heights. They use a small pitcher to fill the jars and a wooden mallet to tap them. After his first try Carter put them in order from highest to lowest, which he said was also loudest to softest. We also have a sponge for spills. Julia loved it just as much when she tried it after her nap.
This idea came from a preschool teacher we know. We have been saving the foam for a long time and I let Carter play with it when Daddy is working in the garage. I never thought to move it indoors until I saw it on someone's blog. This was a big hit. The kids loved getting their Handy Manny tools in on the action :)
We pulled out the bean tray again this week after we got new set of child-size kitchen tools at IKEA. One of their favorites is actually the tea pincer spoon infuser. (I looked that one up. I just knew you put tea leaves in it.) They love to squeeze the handles and scoop almost anything- beans, toys, dinner...
This idea came from a preschool teacher we know. We have been saving the foam for a long time and I let Carter play with it when Daddy is working in the garage. I never thought to move it indoors until I saw it on someone's blog. This was a big hit. The kids loved getting their Handy Manny tools in on the action :)
We pulled out the bean tray again this week after we got new set of child-size kitchen tools at IKEA. One of their favorites is actually the tea pincer spoon infuser. (I looked that one up. I just knew you put tea leaves in it.) They love to squeeze the handles and scoop almost anything- beans, toys, dinner...
Sunday, March 22, 2009
Sweet Spring :)
We're so happy soccer season has started again and today was the first game of the season for the Green Turtles. They had kind of a slow start as they all got used to playing on a team again. In the end Carter scored 2 goals and defended 2 as goalie. They won 5-4 and did a great job cheering each other on and celebrating their progress. It's going to be a great season!
Then it was time for some yard work. Carter and Daddy swung by Home Depot for some mulch. Okay, a whole truck full. We got it spread amazingly fast and the yard looks clean and fresh again. I love new mulch, it's like a fresh coat of paint. I can't wait for the flowers to bloom.
Carter was a huge help in his pickup truck. He loves being our delivery man and at times it's really handy. Hauling 40 lb bags of sand is no easy task. He carried 120lbs in one trip! Nice!
All this work makes a girl tired and dirty. Julia's new favorite past time is lounging with the bathtub all to herself. I love listening to her sing and make up stories while she's in there, so sweet.
Sunday, after church we all went out for pizza- then Daddy and Carter had some guy time and went to see the Harlem Globetrotters. Carter was amazed! He loves to watch the high school and college slam dunk and 3 point contests we have recorded. Then he tries the tricks on his little hoop in the backyard. It's so funny to see just how closely he pays attention to every little move they make. Now he has a head full of new ideas.
This is the first time he's seen someone slam dunk in person.
He brought home a new basketball with him and it has not left his side. He eats with it, plays with it, does his schoolwork with it, and even sleeps with it.
(I love spring when we can have school outside!!)
This little boy has some big hoop dreams.
Then it was time for some yard work. Carter and Daddy swung by Home Depot for some mulch. Okay, a whole truck full. We got it spread amazingly fast and the yard looks clean and fresh again. I love new mulch, it's like a fresh coat of paint. I can't wait for the flowers to bloom.
Carter was a huge help in his pickup truck. He loves being our delivery man and at times it's really handy. Hauling 40 lb bags of sand is no easy task. He carried 120lbs in one trip! Nice!
All this work makes a girl tired and dirty. Julia's new favorite past time is lounging with the bathtub all to herself. I love listening to her sing and make up stories while she's in there, so sweet.
Sunday, after church we all went out for pizza- then Daddy and Carter had some guy time and went to see the Harlem Globetrotters. Carter was amazed! He loves to watch the high school and college slam dunk and 3 point contests we have recorded. Then he tries the tricks on his little hoop in the backyard. It's so funny to see just how closely he pays attention to every little move they make. Now he has a head full of new ideas.
This is the first time he's seen someone slam dunk in person.
He brought home a new basketball with him and it has not left his side. He eats with it, plays with it, does his schoolwork with it, and even sleeps with it.
(I love spring when we can have school outside!!)This little boy has some big hoop dreams.
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