Luke had his 3 year old well-visit today. (Yes, I'm well aware that his birthday was almost a month ago.) We saw our regular pediatrician, who had just begun reading about Luke's cancer scare (in his chart) as he walked into the exam room... He gave him a thorough exam and agreed with the four previous doctors (and all the labs & images) that Luke had nothing more than an infection. His swelling is way down, and everything else about him is great! He recommended that we cancel next week's surgical follow-up, and we are more than happy to do just that!
Thanks so much to each of you who prayed and inquired about Luke. We are so grateful for your support.
If you're interested in stats... He's off the charts in height (and 1 1/2" taller than Zach was at this age) and 95th percentile in weight. Zach's first pediatrician projected that he would grow to be 6'5". We are curious to see if he was right; and are equally curious to see if Luke will surpass his brother one day. There is no doubt that our boys are tall.
Neither of the boys is due for shots at well-exams this year - praise the Lord. Luke didn't cry today, but he was scared and tried hiding under my shirt. Dr. N was amazing and took things at Luke's pace. Luke warmed up quickly and didn't protest to the flu mist he and Zach both received at the end of the visit. I would have to say that this was the BEST trip we've made to our pediatrician's office all summer! And boy did we need that.
Showing posts with label Luke's Lump. Show all posts
Showing posts with label Luke's Lump. Show all posts
Tuesday, August 25, 2009
Wednesday, August 5, 2009
Wonderful buzz words
My two new favorite words...
"Tiny"
"Unimpressed"
Those are the words the surgeon used to describe Luke's lymph nodes today! The surgeon talked with our pediatrician a couple of weeks ago, scoured her notes and all of the labs and images from the past 3+ weeks, talked with me, and examined Luke this morning. He found many swollen nodes on the anterior right side of his neck (front) and a few on his posterior right side (back) and even some in his hip area, but he said the nodes are still TINY compared to anything that would be concerning.
He spent a lot of time talking with me and answering every question I had... He said that at this time he feels a biopsy is unnecessary for several reasons - our initial complaint is getting smaller everyday (it appears to have responded to the antibiotics - which cancer does not do!), Luke is otherwise perfectly healthy without any other signs of cancer, and the doctor has never seen a cancer present like this in a three year old. (A little extra info - with swollen lymph nodes, the reason is generally an infection of some sort or cancer.) Did I mention that Luke's doctor spent 12 years as a pediatric surgeon in one of the leading cancer institutes in America? Even if we did biopsy it, we would only be doing a biopsy on one node (the largest) and it wouldn't give us any indication of what's going on with all the other nodes. So, even a biopsy cannot guarantee that a person (let's stop talking about cancer in terms of Luke, shall we?) does not have cancer because only one node is being biopsied and not all of them.
Luke has been scheduled for a follow-up visit with the surgeon in a month. If the nodes are larger, he may consider a biopsy then. He still feels 99.99999% sure that this is going to pan out to be nothing more than an infection or perhaps a matter of Luke just having larger than normal lymph nodes on his right side. He encouraged us to just live life like normal and enjoy our fun little guy (Luke was a riot at the doctor). He did tell me to keep the most tell-tale cancer symptoms in the back of my mind --- weight loss, excessive bruising, unexplained itching, night sweats --- but not to worry. Luke appears to be just fine.
I don't ever want to hear one of my boys' names used in the same sentence with the word "cancer" again, but I can honestly say that this has been a growing experience for me. The greatest thing I learned is to pray without ceasing while trusting God's plan, even if it includes something very, very scary and undesirable. Being able to do that brings a peace that I can't describe. I have always known in my heart what I wanted (Luke to be perfectly healthy) but I knew that we would be okay no matter what the outcome.
"Tiny"
"Unimpressed"
Those are the words the surgeon used to describe Luke's lymph nodes today! The surgeon talked with our pediatrician a couple of weeks ago, scoured her notes and all of the labs and images from the past 3+ weeks, talked with me, and examined Luke this morning. He found many swollen nodes on the anterior right side of his neck (front) and a few on his posterior right side (back) and even some in his hip area, but he said the nodes are still TINY compared to anything that would be concerning.
He spent a lot of time talking with me and answering every question I had... He said that at this time he feels a biopsy is unnecessary for several reasons - our initial complaint is getting smaller everyday (it appears to have responded to the antibiotics - which cancer does not do!), Luke is otherwise perfectly healthy without any other signs of cancer, and the doctor has never seen a cancer present like this in a three year old. (A little extra info - with swollen lymph nodes, the reason is generally an infection of some sort or cancer.) Did I mention that Luke's doctor spent 12 years as a pediatric surgeon in one of the leading cancer institutes in America? Even if we did biopsy it, we would only be doing a biopsy on one node (the largest) and it wouldn't give us any indication of what's going on with all the other nodes. So, even a biopsy cannot guarantee that a person (let's stop talking about cancer in terms of Luke, shall we?) does not have cancer because only one node is being biopsied and not all of them.
Luke has been scheduled for a follow-up visit with the surgeon in a month. If the nodes are larger, he may consider a biopsy then. He still feels 99.99999% sure that this is going to pan out to be nothing more than an infection or perhaps a matter of Luke just having larger than normal lymph nodes on his right side. He encouraged us to just live life like normal and enjoy our fun little guy (Luke was a riot at the doctor). He did tell me to keep the most tell-tale cancer symptoms in the back of my mind --- weight loss, excessive bruising, unexplained itching, night sweats --- but not to worry. Luke appears to be just fine.
I don't ever want to hear one of my boys' names used in the same sentence with the word "cancer" again, but I can honestly say that this has been a growing experience for me. The greatest thing I learned is to pray without ceasing while trusting God's plan, even if it includes something very, very scary and undesirable. Being able to do that brings a peace that I can't describe. I have always known in my heart what I wanted (Luke to be perfectly healthy) but I knew that we would be okay no matter what the outcome.
Friday, July 31, 2009
We've had better days...
Today we were back in the doctor's office. Among other things, Luke developed a head-to-toe rash this week. The doctor who'd been treating his lump was out today, so we had to see a different doctor. This was okay with us; after all, it was just a rash and a new set of eyes and ideas couldn't hurt. I was very surprised when the doctor looked up from examining Luke and said that he'd found a new lump that "did not feel like a lymph node". He ordered an ultrasound and used the phrase "mass on right side of neck". So, back to Children's radiology department a couple of hours later. It was a bit unnerving.
The results came in late this afternoon. The "mass" is a cluster of enlarged lymph nodes surrounded by fatty tissue. The doctor says it is most likely just a mean infection. He said to check back in with the doctor we'd been seeing later next week and, based on her judgment, we may be seeing a surgeon after all. If we see a surgeon, it sounds like he will perform a biopsy to determine what we're dealing with. It may be an "atypical infection" that will only respond to a very specific medication. The doctor believes the ugly, itchy rash is a reaction to 17 days worth of antibiotics. Being off meds between now and (IF) when we have to see a surgeon and go on another drug will hopefully give Luke's body a chance to recover.
I am so very thankful today for two things in particular... My sister-in-law. She came to get Zach between the doctors appointment and the ultrasound appointment. Hanging with his cousins was far more fun than hanging out at the hospital --- and then she took the kids out for greasy burgers, brought Luke and me some frozen custard, and kept Zach till later in the afternoon. This gave me some much needed time to digest this new information without Zach's sweet little eyes on me. I took a bubble bath too. I am also just pretty much in love with anyone who works in pediatrics. Everyone at the doctor's office seems to be familiar with Luke's situation and they are so sympathetic every time they talk to me. A phone nurse even told me jokes to give me a laugh before hanging up yesterday (after delivering the cruddy news that the doc thought we needed to be there at 8am today to address this week's symptoms). Luke had a somewhat difficult time today; he is getting fearful and emotional about doctor's appointments. The doctors, nurses, technicians, check-in people, even the security guard have done everything possible to put us at ease. I think it takes a special kind of person to work with sick kids. To those of you who do - from the bottom of my heart, thank you.
The results came in late this afternoon. The "mass" is a cluster of enlarged lymph nodes surrounded by fatty tissue. The doctor says it is most likely just a mean infection. He said to check back in with the doctor we'd been seeing later next week and, based on her judgment, we may be seeing a surgeon after all. If we see a surgeon, it sounds like he will perform a biopsy to determine what we're dealing with. It may be an "atypical infection" that will only respond to a very specific medication. The doctor believes the ugly, itchy rash is a reaction to 17 days worth of antibiotics. Being off meds between now and (IF) when we have to see a surgeon and go on another drug will hopefully give Luke's body a chance to recover.
I am so very thankful today for two things in particular... My sister-in-law. She came to get Zach between the doctors appointment and the ultrasound appointment. Hanging with his cousins was far more fun than hanging out at the hospital --- and then she took the kids out for greasy burgers, brought Luke and me some frozen custard, and kept Zach till later in the afternoon. This gave me some much needed time to digest this new information without Zach's sweet little eyes on me. I took a bubble bath too. I am also just pretty much in love with anyone who works in pediatrics. Everyone at the doctor's office seems to be familiar with Luke's situation and they are so sympathetic every time they talk to me. A phone nurse even told me jokes to give me a laugh before hanging up yesterday (after delivering the cruddy news that the doc thought we needed to be there at 8am today to address this week's symptoms). Luke had a somewhat difficult time today; he is getting fearful and emotional about doctor's appointments. The doctors, nurses, technicians, check-in people, even the security guard have done everything possible to put us at ease. I think it takes a special kind of person to work with sick kids. To those of you who do - from the bottom of my heart, thank you.
Tuesday, July 28, 2009
Surgical consult
Are you checking for an update on Luke's surgical consult? Great news... The Augmentin is working so well that the lump is actually smaller now than it was when we found it two weeks ago! This is great news. When I notified the surgeon of this yesterday, he determined that there was no reason to explore surgery!!! Today's appointment was canceled. He asked us to call him back if it begins to grow again, but otherwise Luke just needs to finish his meds and go on with life. Luke has no idea what surgery is, but he's very familiar with Augmentin. This is probably the worst possible news for Luke -- having to keep taking this disgusting medicine for a few more days! We've promised a "no more medicine" party after his last dose. What a trooper.
Thursday, July 23, 2009
So far, so very good!
The doctor's office called early again this morning with more good news. They are still waiting on a couple of labs, but so far everything is either within the normal range or negative. I believe that every test that would be an indicator of cancer is back and they've all been clear. The doctors felt from the beginning that cancer was very unlikely, but we are relieved to hear that all of the tests concur with that opinion.
Luke's medicine is absolutely disgusting, but I think it's working. The old medicine was yummy pink. This medicine is gross white. I rushed back to the pharmacy after his first dose to have strawberry added to it. I tasted it on my way home and it still made me shudder with disgust. The flavoring didn't change the color, so the pharmacist told me that I could add food coloring to make it pink. Changing the color was the most helpful, I think... He doesn't take off for the nearest closet when he sees it, but this morning I did have to wrestle him to the floor and hold him down to make him take it. No fun, but if it makes the gigantic lump go away and helps us avoid surgery, we'll just pretend to be members of the WWF twice a day for ten days!
We also went back to the pediatrician this morning to have his TB test read. As we expected, it was also negative.
It could be a mother's hope, but I feel like the lump is beginning to get smaller. To me, it feels like the hard swelling is going down and that I can actually make out the swollen lymph node again (as opposed to the entire side of his neck being swollen). Unless the lump goes away completely by Tuesday (every doctor has said it would probably take months for it to go away completely) we will keep our surgical appointment. I would imagine that if Luke is showing good progress and his pain is diminishing, he will probably not have surgery -- especially if tests indicate that this is a curable infection.
We could not be happier with the care of our pediatrician's office. Their efforts to call us first thing each morning with results is so kind of them. I appreciate the good news with my coffee! Perhaps I will add a chocolate croissant to the mix tomorrow morning... Thanks to all of you for your prayers and encouragement. We say it all the time, but it's true -- we are richly blessed with wonderful friends.
Luke's medicine is absolutely disgusting, but I think it's working. The old medicine was yummy pink. This medicine is gross white. I rushed back to the pharmacy after his first dose to have strawberry added to it. I tasted it on my way home and it still made me shudder with disgust. The flavoring didn't change the color, so the pharmacist told me that I could add food coloring to make it pink. Changing the color was the most helpful, I think... He doesn't take off for the nearest closet when he sees it, but this morning I did have to wrestle him to the floor and hold him down to make him take it. No fun, but if it makes the gigantic lump go away and helps us avoid surgery, we'll just pretend to be members of the WWF twice a day for ten days!
We also went back to the pediatrician this morning to have his TB test read. As we expected, it was also negative.
It could be a mother's hope, but I feel like the lump is beginning to get smaller. To me, it feels like the hard swelling is going down and that I can actually make out the swollen lymph node again (as opposed to the entire side of his neck being swollen). Unless the lump goes away completely by Tuesday (every doctor has said it would probably take months for it to go away completely) we will keep our surgical appointment. I would imagine that if Luke is showing good progress and his pain is diminishing, he will probably not have surgery -- especially if tests indicate that this is a curable infection.
We could not be happier with the care of our pediatrician's office. Their efforts to call us first thing each morning with results is so kind of them. I appreciate the good news with my coffee! Perhaps I will add a chocolate croissant to the mix tomorrow morning... Thanks to all of you for your prayers and encouragement. We say it all the time, but it's true -- we are richly blessed with wonderful friends.
Tuesday, July 21, 2009
A lump in Luke's neck
Eight days ago I noticed a lump in Luke's neck as I was helping him brush his teeth. We called our pediatrician and made an appointment with one of the doctors in the practice. This particular doctor is the head of their walk-in sick clinic and I really like her. She performed a very thorough physical exam, ran a CBC and checked for strep throat (he'd recently been exposed). Everything came back within the normal range, so she did her best to reassure us that it was probably just a viral infection that would need to run its course. Aside from this lump (lymph node just under the jaw line, near the ear) absolutely nothing appears to be wrong with my son.
The very next day, I had to take Luke to our local children's hospital for an unrelated issue. While we were there, I asked the doc for his opinion on the lymph node. He said all the same things the pediatrician did, "Not alarmingly large, moves around, probably just an infection." He thought it was probably bacterial as opposed to viral... Probably staph. He prescribed an antibiotic and said to call our ped if it gets any bigger or doesn't show significant signs of improvement within two weeks. Both docs used the words, "I don't think this is a bad lump", so we took comfort in that.
Last night I noticed that the lump feels larger; moving farther up towards the ear and down his neck. You can see the bulging from several feet away. (I wish I were exaggerating.) I took him back to see our ped today. She agreed that it was bigger, gave another very thorough exam and ordered a lot of labs and a chest x-ray (looking at the lymph nodes in the chest). We will go back in to have his TB test read in two days (apparently there is a strain of TB that is not upper respiratory). Part of his blood labs and the chest x-ray report will be in the ped's hands later this afternoon. The remainder of the labs will come in later this week. We don't expect the doc to call until she has them all... Until then, we wait.
While we were at our children's hospital getting all the labs done, our ped personally called a pediatric surgeon that she highly recommended. His schedule is packed, but he agreed that Luke needs to be seen sooner rather than later. (Exactly how I am supposed to take that?) He asked our ped to call in a stronger antibiotic, and said he wanted to give the labs time to come in and the new meds time to work before seeing him... So, he had his assistant fit us in next Tuesday morning.
The surgeon told our pediatrician that in all his years of surgery, he has never once seen a lymphoma present this way in such a young child. He has seen secondary lesions appear this way (secondary to a pre-existing cancer), but he believes that Luke would have been very ill for some time if he has an undiagnosed cancer. His CBC (from last week), his physical exams, his diet.... there are NO indicators other than this lump that anything is wrong with him! We are encouraged by that.
The surgeon and our pediatrician believe that this will most likely prove to be an infection. Quite possibly an infection that will end up being surgically removed, but an infection all the same.
I am so very grateful for our pediatrician. I hesitated to take Luke to the doctor today because I didn't want to inconvenience anyone if the size increase was only in my imagination. Our doctor was so kind, compassionate and thorough. I felt like she was treating Luke the way she'd treat her own child. And as my eyes welled with tears at the mention of surgery, she handed me a tissue the way a dear friend would. The nurses and technicians at the hospital were wonderful too. Their kindness and understanding made our not-so-pleasant morning bearable. My kids loved the slushes they received after Luke gave up three vials of his blood!
I have prayed constantly over these last eight days that God would make it clear to me if something is seriously wrong with him. I have prayed that I would know what I was supposed to be looking for, since I have no medical training at all. And I've prayed that our doctors would be skillful and correct, and that I'd be covered with His peace as we wait for this to be resolved. I cried on the way from our ped's office to the hospital, but managed to put on a smile for the kids when we were face to face. I'm amazed that I was able to hold Luke while his blood was drawn! That is one thing I never, in a million years, would have expected I'd be capable of. I give the credit for that to God!!
My prayers now turn to the coming week. That Luke's new meds will obviously be working (prior to our surgical consult) if this is an infection that can go away without surgery. We pray that his labs will come back with clear answers, definitely ruling things in or out. And we will pray for the knowledge and skill of the surgeon we will be meeting next Tuesday. We beg for this not to be cancer. Of course, we continue to pray for His peace and patience as we wait.
The very next day, I had to take Luke to our local children's hospital for an unrelated issue. While we were there, I asked the doc for his opinion on the lymph node. He said all the same things the pediatrician did, "Not alarmingly large, moves around, probably just an infection." He thought it was probably bacterial as opposed to viral... Probably staph. He prescribed an antibiotic and said to call our ped if it gets any bigger or doesn't show significant signs of improvement within two weeks. Both docs used the words, "I don't think this is a bad lump", so we took comfort in that.
Last night I noticed that the lump feels larger; moving farther up towards the ear and down his neck. You can see the bulging from several feet away. (I wish I were exaggerating.) I took him back to see our ped today. She agreed that it was bigger, gave another very thorough exam and ordered a lot of labs and a chest x-ray (looking at the lymph nodes in the chest). We will go back in to have his TB test read in two days (apparently there is a strain of TB that is not upper respiratory). Part of his blood labs and the chest x-ray report will be in the ped's hands later this afternoon. The remainder of the labs will come in later this week. We don't expect the doc to call until she has them all... Until then, we wait.
While we were at our children's hospital getting all the labs done, our ped personally called a pediatric surgeon that she highly recommended. His schedule is packed, but he agreed that Luke needs to be seen sooner rather than later. (Exactly how I am supposed to take that?) He asked our ped to call in a stronger antibiotic, and said he wanted to give the labs time to come in and the new meds time to work before seeing him... So, he had his assistant fit us in next Tuesday morning.
The surgeon told our pediatrician that in all his years of surgery, he has never once seen a lymphoma present this way in such a young child. He has seen secondary lesions appear this way (secondary to a pre-existing cancer), but he believes that Luke would have been very ill for some time if he has an undiagnosed cancer. His CBC (from last week), his physical exams, his diet.... there are NO indicators other than this lump that anything is wrong with him! We are encouraged by that.
The surgeon and our pediatrician believe that this will most likely prove to be an infection. Quite possibly an infection that will end up being surgically removed, but an infection all the same.
I am so very grateful for our pediatrician. I hesitated to take Luke to the doctor today because I didn't want to inconvenience anyone if the size increase was only in my imagination. Our doctor was so kind, compassionate and thorough. I felt like she was treating Luke the way she'd treat her own child. And as my eyes welled with tears at the mention of surgery, she handed me a tissue the way a dear friend would. The nurses and technicians at the hospital were wonderful too. Their kindness and understanding made our not-so-pleasant morning bearable. My kids loved the slushes they received after Luke gave up three vials of his blood!
I have prayed constantly over these last eight days that God would make it clear to me if something is seriously wrong with him. I have prayed that I would know what I was supposed to be looking for, since I have no medical training at all. And I've prayed that our doctors would be skillful and correct, and that I'd be covered with His peace as we wait for this to be resolved. I cried on the way from our ped's office to the hospital, but managed to put on a smile for the kids when we were face to face. I'm amazed that I was able to hold Luke while his blood was drawn! That is one thing I never, in a million years, would have expected I'd be capable of. I give the credit for that to God!!
My prayers now turn to the coming week. That Luke's new meds will obviously be working (prior to our surgical consult) if this is an infection that can go away without surgery. We pray that his labs will come back with clear answers, definitely ruling things in or out. And we will pray for the knowledge and skill of the surgeon we will be meeting next Tuesday. We beg for this not to be cancer. Of course, we continue to pray for His peace and patience as we wait.
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