Caleb’s Journey
Donation protected
The journey so far:
In early August Caleb woke up with pain in his hip and couldn’t walk. We took him to urgent care (it was Sunday and his pediatricians office was closed) and they took an x ray of his hips and said it was most likely “growing pains.” It was much better within 24 hours, then went away in a few days.
About two weeks later he had another “episode” of the same symptoms and we took him to his pediatrician. His range of motion and everything else seemed normal, so we thought the diagnosis of “transient synovitis” (most common cause of hip pain in kids his age, and goes away on its own) seemed reasonable.
A month passed with no issues. He was running, jumping, and just enjoying his summer with maybe a little pain here and there but nothing that alerted us that something big may be going on.
September 23rd, 2020 he woke up in much worse pain than he had previously. We went back to the pediatrician and he got labs and another X-ray. Again the x ray was normal. Even a referral to a bone specialist didn’t see anything of great concern on the hip x ray. His labs were abnormal, but nothing that said “red flag.” Looking back, him being so healthy and otherwise normal actually hurt us in hurrying the diagnostics along.
A week after that his pain suddenly went from mild/moderate to severe. So much that Tylenol and Motrin wouldn’t touch it. So we came to Vanderbilt ER on Saturday, October 3rd, 2020. Repeat of x ray, labs and such didn’t show us much more than we already knew. Right from the get go the ER doc said three things could cause this pain. Infection, autoimmune disease or malignancy. But malignancy was highly unlikely and no one was very suspecting at that point. Again, his overall health was misleading.
It wasn’t until the rheumatologist saw something she didn’t like in his hip x ray that we first were told this could be the C word that following day, Sunday. Later that afternoon, as Dad went back home to gather a few supplies, one of the kind residents came back by and asked specifically “how’s mom hanging in there?” Again the C word was brought up and I began to really worry.
An MRI with sedation was needed (because of his age and not being still) to see exactly what was going on. That was scheduled Monday morning.
It came back showing lesions in his pelvis, femur and spine. I’ll never forget that moment. When a whole team walked in the room and asked if we’d like to have someone on the phone before we talked. When they told us and I asked if it was just one lesion and they said no. When they showed us the MRI. Nothing in life can prepare you for that.
The next step was a CT of abdomen, chest and head on Tuesday the 6th to look for other lesions. That was the hardest test so far as Caleb had to be strapped down and screamed the whole time. But it was short, thank God, and it showed no other lesions.
We were hoping to get the biopsy the same day but the scheduling didn’t work out. The biopsy will show us what we’re dealing with and we can get a treatment plan going.
We’ve had so many emotions during this time. No one ever wants to hear this news. No one can be prepared for this. But what we know is God is with us. He is for us. And we are never alone. He will walk beside us through this. Don’t think I haven’t cussed him. Haven’t shook my fist and asked why. But what I do know is when I’m holding my sweet boy, when his pain is barely managed by strong drugs, and I begin to sing hymns and worship songs and rock him and he begins to rock his little body with me. That’s when I feel the great Comforter and I feel the most at peace. When I remember his promises. We are clinging to Jeremiah 29:11 and I say it over him every night. For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you. Plans to give you a hope and a future.
Specific prayer requests: for a good report from the biopsy and that Calebs pain will be under control.
https://m.facebook.com/Calebs-Journey-109907727550233/
In early August Caleb woke up with pain in his hip and couldn’t walk. We took him to urgent care (it was Sunday and his pediatricians office was closed) and they took an x ray of his hips and said it was most likely “growing pains.” It was much better within 24 hours, then went away in a few days.
About two weeks later he had another “episode” of the same symptoms and we took him to his pediatrician. His range of motion and everything else seemed normal, so we thought the diagnosis of “transient synovitis” (most common cause of hip pain in kids his age, and goes away on its own) seemed reasonable.
A month passed with no issues. He was running, jumping, and just enjoying his summer with maybe a little pain here and there but nothing that alerted us that something big may be going on.
September 23rd, 2020 he woke up in much worse pain than he had previously. We went back to the pediatrician and he got labs and another X-ray. Again the x ray was normal. Even a referral to a bone specialist didn’t see anything of great concern on the hip x ray. His labs were abnormal, but nothing that said “red flag.” Looking back, him being so healthy and otherwise normal actually hurt us in hurrying the diagnostics along.
A week after that his pain suddenly went from mild/moderate to severe. So much that Tylenol and Motrin wouldn’t touch it. So we came to Vanderbilt ER on Saturday, October 3rd, 2020. Repeat of x ray, labs and such didn’t show us much more than we already knew. Right from the get go the ER doc said three things could cause this pain. Infection, autoimmune disease or malignancy. But malignancy was highly unlikely and no one was very suspecting at that point. Again, his overall health was misleading.
It wasn’t until the rheumatologist saw something she didn’t like in his hip x ray that we first were told this could be the C word that following day, Sunday. Later that afternoon, as Dad went back home to gather a few supplies, one of the kind residents came back by and asked specifically “how’s mom hanging in there?” Again the C word was brought up and I began to really worry.
An MRI with sedation was needed (because of his age and not being still) to see exactly what was going on. That was scheduled Monday morning.
It came back showing lesions in his pelvis, femur and spine. I’ll never forget that moment. When a whole team walked in the room and asked if we’d like to have someone on the phone before we talked. When they told us and I asked if it was just one lesion and they said no. When they showed us the MRI. Nothing in life can prepare you for that.
The next step was a CT of abdomen, chest and head on Tuesday the 6th to look for other lesions. That was the hardest test so far as Caleb had to be strapped down and screamed the whole time. But it was short, thank God, and it showed no other lesions.
We were hoping to get the biopsy the same day but the scheduling didn’t work out. The biopsy will show us what we’re dealing with and we can get a treatment plan going.
We’ve had so many emotions during this time. No one ever wants to hear this news. No one can be prepared for this. But what we know is God is with us. He is for us. And we are never alone. He will walk beside us through this. Don’t think I haven’t cussed him. Haven’t shook my fist and asked why. But what I do know is when I’m holding my sweet boy, when his pain is barely managed by strong drugs, and I begin to sing hymns and worship songs and rock him and he begins to rock his little body with me. That’s when I feel the great Comforter and I feel the most at peace. When I remember his promises. We are clinging to Jeremiah 29:11 and I say it over him every night. For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you. Plans to give you a hope and a future.
Specific prayer requests: for a good report from the biopsy and that Calebs pain will be under control.
https://m.facebook.com/Calebs-Journey-109907727550233/
Fundraising team (2)
Meghan Gargus
Organizer
Sedalia, KY
Amanda Massey
Beneficiary
Jason Jones
Team member
Raised $400 from 4 donations
This team raised $2,635 from 37 other donations.
