It has been an interesting week since Julia's scan day last Monday. God has given us tremendous peace among all the questions. One of the first lessons you learn in the cancer world is to keep your head where your feet are. Right now for us that is the land of lots of questions and not a lot of answers. Our first task was to contact urology to find out what Dr. Hodges wanted to do about her bladder issues and abnormal urine. After many calls back and forth he decided to start her on an antibiotic. He has several tests and procedures he wants to do, but he is taking the backseat to oncology right now and won't start until her next scans are done.
Today we had her well-check at the pediatrician's office. We love our doctor and it has been such a journey to get to this place. After 9 different pediatricians in 4 different practices and some really horrible experiences over the past 11 years- we are so blessed with the doctor we have been sent. (And he was trained at Brenners which is bonus in our book!) Today just reinforced all the reasons why he is such a good fit for us. It is not an easy job to take care of a child with multiple medical issues and 11 different specialists. He does an amazing job coordinating her care and filling in the blanks where needed. Her last doctor used to start every appointment telling me to start at the beginning and fill him in up to the current day. Whenever he prescribed medications he would ask me if it was something she could have. I appreciate his asking, but I need someone who keeps up and knows what to do next. Her doc also does a great job filling in all the blanks. When you see so many specialists sometimes the normal development concerns get ignored. Today he spent an hour and a half with us. I am so touched by his skill, communication, expertise, compassion, and understanding. Thanking God for you today, Dr. C!
While we wait for lots of other answers, her pediatrician is going to be able to get her into another neurologist in 3 weeks instead of the 6 month wait at Brenners. As much as he wants to keep all her specialists at one hospital, he doesn't want her to have to suffer that much longer without consistent pain relief. She seems to be having cluster migraines and we need some medication options.
They also rechecked her urine to make sure the medicine had cleared up the infection. Unfortunately it is actually worse instead of better, but thankfully we did an additional test last week to be sent for culture so we at least know what we are dealing with. Please pray that this new medicine does the trick. We really need to protect her urinary health and that single kidney.
We have been keeping ourselves busy in the mean time. Last Thursday was our much-anticipated yearly trip to the Dixie Classic Fair. This has become a tradition for us after her annual scans. Unfortunately, we weren't celebrating the same news as usual, but we were so thankful for a beautiful day and fun time together.
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As we were walking around that day, Julia looked at me and said, "Mom, I didn't get the NED (No Evidence of Disease=clear scans) we were hoping for did I?" It broke my heart to know her heart was pondering those questions. I told her we didn't, but we also didn't get any answers- just lots of new questions. She started to cry and said, "Mom, I don't want to have cancer again." My heart broke in a million pieces for her. I know this is a burden she has to carry for the rest of her life. Part of her life off treatment is a regular schedule of screenings and tests indefinitely. She will always have annual scans and things like mammograms and colonoscopies start at age 25 for these kids. As we move forward we hope to better equip her with the tools she needs to face the unknowns, the questions, the scares, the emotions, and even the feelings of others. As we've said before cancer hands you a "goodie bag" on the way out and many of the contents are quite a handful. Pray that we have the discernment and wisdom to know when to talk, when to be quiet, and what we should say to her.
We did find a fun way to get out some big feelings people were having. Demolition was just what the doctor ordered. Our old deck was falling apart and becoming unsafe, so the kids and some sledgehammers turned it into a pile of firewood. A fun way to see their strength at work!
As we sat down to eat dinner Sunday night we had no idea what lay ahead. As Billy was eating his food became lodged in his esophagus. He tried unsuccessfully for an hour to dislodge it. Then he headed to the ER. They did everything they could for another 3 hours and then took him by ambulance to another hospital for emergency surgery during the night. Thankfully the procedure was successful and everything went well. He was released a few hours later. The doctor took pictures and biopsies and we are awaiting pathology reports to determine what condition is causing this and what the next steps are going to be. After a day of recovery yesterday, he seems to be much better just dealing with some discomfort and a very limited prescribed diet.
So apparently our waiting has just grown a little. We are thankful for the peace God has given us in the unknowns. Whatever is ahead is already determined. We know worry carries no weight, but just saps our strength. We trust that God will continue to carry us whatever we are called to face. We are so thankful for our friends who have reached out to help and walk beside us through this in a tangible way. We decided to let Julia pick which day we go back for her follow up scans. It was an opportunity to give her some control and choice in all of this (she announced today that she's tired of doctor's just from this past week). She has picked Tuesday, October 21 because Ms. Betsey will be there to do art, Ms. Stacy is working, and the pet therapy dogs visit that day.
We've been spending a lot of time listening to our favorite music. Julia's repeated requests are Travis Cotterell's new CD- I'm Living Proof. Putting the song 'Every Praise' on repeat is an awesome reminder of how we want to live our lives. And 'Awesome' is great when for those moments you need to preach real truth to yourself. Watching her belt it out with all her might is a beautiful thing! I need a dashboard cam :) She also loves Moriah Peters, 'You Carry Me'. When she asked me to get the song for her I had yet to realize how much it tells her story...
Today we had her well-check at the pediatrician's office. We love our doctor and it has been such a journey to get to this place. After 9 different pediatricians in 4 different practices and some really horrible experiences over the past 11 years- we are so blessed with the doctor we have been sent. (And he was trained at Brenners which is bonus in our book!) Today just reinforced all the reasons why he is such a good fit for us. It is not an easy job to take care of a child with multiple medical issues and 11 different specialists. He does an amazing job coordinating her care and filling in the blanks where needed. Her last doctor used to start every appointment telling me to start at the beginning and fill him in up to the current day. Whenever he prescribed medications he would ask me if it was something she could have. I appreciate his asking, but I need someone who keeps up and knows what to do next. Her doc also does a great job filling in all the blanks. When you see so many specialists sometimes the normal development concerns get ignored. Today he spent an hour and a half with us. I am so touched by his skill, communication, expertise, compassion, and understanding. Thanking God for you today, Dr. C!
While we wait for lots of other answers, her pediatrician is going to be able to get her into another neurologist in 3 weeks instead of the 6 month wait at Brenners. As much as he wants to keep all her specialists at one hospital, he doesn't want her to have to suffer that much longer without consistent pain relief. She seems to be having cluster migraines and we need some medication options.
They also rechecked her urine to make sure the medicine had cleared up the infection. Unfortunately it is actually worse instead of better, but thankfully we did an additional test last week to be sent for culture so we at least know what we are dealing with. Please pray that this new medicine does the trick. We really need to protect her urinary health and that single kidney.
We have been keeping ourselves busy in the mean time. Last Thursday was our much-anticipated yearly trip to the Dixie Classic Fair. This has become a tradition for us after her annual scans. Unfortunately, we weren't celebrating the same news as usual, but we were so thankful for a beautiful day and fun time together.
As we were walking around that day, Julia looked at me and said, "Mom, I didn't get the NED (No Evidence of Disease=clear scans) we were hoping for did I?" It broke my heart to know her heart was pondering those questions. I told her we didn't, but we also didn't get any answers- just lots of new questions. She started to cry and said, "Mom, I don't want to have cancer again." My heart broke in a million pieces for her. I know this is a burden she has to carry for the rest of her life. Part of her life off treatment is a regular schedule of screenings and tests indefinitely. She will always have annual scans and things like mammograms and colonoscopies start at age 25 for these kids. As we move forward we hope to better equip her with the tools she needs to face the unknowns, the questions, the scares, the emotions, and even the feelings of others. As we've said before cancer hands you a "goodie bag" on the way out and many of the contents are quite a handful. Pray that we have the discernment and wisdom to know when to talk, when to be quiet, and what we should say to her.
We did find a fun way to get out some big feelings people were having. Demolition was just what the doctor ordered. Our old deck was falling apart and becoming unsafe, so the kids and some sledgehammers turned it into a pile of firewood. A fun way to see their strength at work!
As we sat down to eat dinner Sunday night we had no idea what lay ahead. As Billy was eating his food became lodged in his esophagus. He tried unsuccessfully for an hour to dislodge it. Then he headed to the ER. They did everything they could for another 3 hours and then took him by ambulance to another hospital for emergency surgery during the night. Thankfully the procedure was successful and everything went well. He was released a few hours later. The doctor took pictures and biopsies and we are awaiting pathology reports to determine what condition is causing this and what the next steps are going to be. After a day of recovery yesterday, he seems to be much better just dealing with some discomfort and a very limited prescribed diet.
So apparently our waiting has just grown a little. We are thankful for the peace God has given us in the unknowns. Whatever is ahead is already determined. We know worry carries no weight, but just saps our strength. We trust that God will continue to carry us whatever we are called to face. We are so thankful for our friends who have reached out to help and walk beside us through this in a tangible way. We decided to let Julia pick which day we go back for her follow up scans. It was an opportunity to give her some control and choice in all of this (she announced today that she's tired of doctor's just from this past week). She has picked Tuesday, October 21 because Ms. Betsey will be there to do art, Ms. Stacy is working, and the pet therapy dogs visit that day.
We've been spending a lot of time listening to our favorite music. Julia's repeated requests are Travis Cotterell's new CD- I'm Living Proof. Putting the song 'Every Praise' on repeat is an awesome reminder of how we want to live our lives. And 'Awesome' is great when for those moments you need to preach real truth to yourself. Watching her belt it out with all her might is a beautiful thing! I need a dashboard cam :) She also loves Moriah Peters, 'You Carry Me'. When she asked me to get the song for her I had yet to realize how much it tells her story...
Feels like it's been miles and miles
Feels like it's an uphill climb
Sometimes I get weary on the way
But when I look back at where I've been
When I look back, I'm sure of it
I was right there in Your arms and I can say
Every moment of my life
God, You never left my side
Every valley, every storm
You were there, You were there
I don't need to know what's next
You'll be with me every step
Through it all, through it all
I can see You carry me
There are days I wonder if
You can fix the mess I'm in
Times when nothing seems
To go the way it should
But then I look back on every season
I can find there's ten thousand reasons
To trust that You can work all things for good
Through the wind and waves
Through my worst mistakes
Through the times I thought I walked alone
You were holding me
You were whispering
I will never leave you on your own.
Feels like it's an uphill climb
Sometimes I get weary on the way
But when I look back at where I've been
When I look back, I'm sure of it
I was right there in Your arms and I can say
Every moment of my life
God, You never left my side
Every valley, every storm
You were there, You were there
I don't need to know what's next
You'll be with me every step
Through it all, through it all
I can see You carry me
There are days I wonder if
You can fix the mess I'm in
Times when nothing seems
To go the way it should
But then I look back on every season
I can find there's ten thousand reasons
To trust that You can work all things for good
Through the wind and waves
Through my worst mistakes
Through the times I thought I walked alone
You were holding me
You were whispering
I will never leave you on your own.
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