Hailey's Visit went well. We arrived on the 10th floor and they sent us downstairs for a chest x-ray.
We got into a room - a wonderful room with a whole wall of windows. The view on the 10th floor is spectacular. Two nurses came in to draw Hailey's blood and it went pretty well. Much better than at Holland Hospital.
The Doctor saw us next and she got a full History of her night sweats and I gave her a full report of every ache and pain Hailey has talked about in the past month - Anything I could think of.
The blood work, including sedimentation rate came back clean. We are still waiting to hear back on Thyroid results, Mono and Epstein Bar. Her X-ray came back clean.
The Doctor says her sweats aren't normal. She thinks the likelihood of it being Lymphoma are very slim. However, she will call us on Monday with results and will want to know if Hailey continued to sweat this weekend (She was dry last night and so far tonight). If she does have night sweats again, they will send her for CT scans if the rest of the blood work comes back normal.
The Doctor thinks it may well be a lingering Virus, taking its time to clear out of her system. Since Hailey seems so healthy otherwise, I feel that it is a reasonable and very probable conclusion.
Matt goes for his MRI on Monday.
Let's see how things go this week.
Friday, October 28, 2011
Wednesday, October 19, 2011
Matt's 2 years post Cancer CT Scan Results
Matt's CT was clean: Good News!
When Matt told the Dr. that he's been having difficulties remembering things and keeping time lines straight and had more difficulties than usual spelling (he is dyslexic), the Dr. ordered an MRI (Monday Oct 31st). He says it's unusual for the brain to be involved with Hodgkin's, that he's only seen it once with a patient who hadn't received treatment until 5 months into it. But he mentioned that Matt is at greater risk of certain other diseases due to the cancer and chemo.
If they don't find anything wrong physically, they will run neuro and psych test - having him answer questions and see how and what he's having trouble with.
Hailey's appointment with DeVoss Cancer and Hematology is next week Thursday. I'm relieved to be able to say that the last two nights she's been pretty much completely dry. A little damp last Sunday.
I asked Dr. Gribbins what he thought. I was wondering whether I should cancel the appointment if she continues to improve. He said not to cancel the appointment if she improves, cause it's a good thing to rule out and not to worry, they won't run a CT unless it's necessary.
That makes me feel better - It sucks to feel like a paranoid mother - but honestly, if I ignored this and found out later that it was Hodgkin's I wouldn't be able to justify having ignored it... and that's that. Good news is, he thinks too, that it's most likely from her Virus. :)
I'll post more next week.
When Matt told the Dr. that he's been having difficulties remembering things and keeping time lines straight and had more difficulties than usual spelling (he is dyslexic), the Dr. ordered an MRI (Monday Oct 31st). He says it's unusual for the brain to be involved with Hodgkin's, that he's only seen it once with a patient who hadn't received treatment until 5 months into it. But he mentioned that Matt is at greater risk of certain other diseases due to the cancer and chemo.
If they don't find anything wrong physically, they will run neuro and psych test - having him answer questions and see how and what he's having trouble with.
Hailey's appointment with DeVoss Cancer and Hematology is next week Thursday. I'm relieved to be able to say that the last two nights she's been pretty much completely dry. A little damp last Sunday.
I asked Dr. Gribbins what he thought. I was wondering whether I should cancel the appointment if she continues to improve. He said not to cancel the appointment if she improves, cause it's a good thing to rule out and not to worry, they won't run a CT unless it's necessary.
That makes me feel better - It sucks to feel like a paranoid mother - but honestly, if I ignored this and found out later that it was Hodgkin's I wouldn't be able to justify having ignored it... and that's that. Good news is, he thinks too, that it's most likely from her Virus. :)
I'll post more next week.
Sunday, October 16, 2011
Hailey?
Hailey, our daughter, 7 years old had a fever on September 27th, 2011. The next day she threw up at the breakfast table, shortly after my family sang Happy Birthday to me. That day when I called the pediatrician's office to let them know that Matt was bringing a urine sample to the lab, they said they wanted Hailey to come in for a strep test, since she mentioned yesterday evening that she had a sore throat earlier in the day.
Matt was taking a urine sample to the lab, because she has Urinary Reflux and when she gets a fever without other symptoms or with vomiting we check to make sure she doesn't have a urinary tract infection. At the doctor's office the strep test came back negative, but the doctor noticed blisters/ulcers in her throat and diagnosed her with herpangina (it's related to foot, hand, mouth disease without the blisters on hands and feet - kind of like chickenpox of the throat). I took her home and her fever went away that afternoon and did not return. She never did complain of a sore throat.
The next evening, I went to check on both girls as I always do before going to bed and on the way downstairs I noticed that my pants were wet, where I was sitting on Hailey's bed. At first, I thought she had an accident and I got her up to go potty and I changed her sheets and blanket. Then I realized that her undies weren't that wet, but her undershirt was drenched and I didn't smell any pee. It was sweat.
The next two nights she was also very wet. I had made her sleep in underpants and undershirt and only had a sheet on her. Sunday night I finally put pull ups on her just to be sure she wasn't having accidents. I opened her window (it was in the low 50's that night) we set the furnace down to 69 (we usually keep it around 71). She was soaking wet again that night and her pull ups were dry.
I called the Dr. office on Monday and we got an appointment that evening. Matt met me with Hailey at the dr office after work. He thinks it's from the virus she had. However, he sent us to the lab to run 3 different blood tests (CBC, something lactase and I can't remember the third). They also took x-rays of her feet, because she's been saying her heels hurt when she walks on them, not at night though, and during recess she tried to find places to sit, because they've been so sore.
That night (Monday) she wasn't very wet. A little sweaty but not bad. She has always been a bit of a sweaty kid at night - her hair is often wet. I've thought it to be unusual before, but when kids are little their bodies aren't really good at regulating their temperature yet. However, she should be growing out of that by now.
Next day, the results came back normal for blood work and x-rays. I called the office to let them know that Hailey had 3 big spots of pin needle bruising on her back and that she can't recall getting hurt. He wasn't concerned, and said I should call back if she has unexplained bruising more frequently. Matt thinks that Sylvia was playing horse with Hailey and was riding her back :) I'm thinking he's right.
Again she was fairly dry Wednesday night. Thursday night she kept sweating between 9 and 11pm. Her body, arms and hand left wet spots on her sheets. I took pictures.
Friday morning, I call Dr. Gribbin's office to see what he thinks. The office called me back leaving a VM on my cell phone saying that they don't specialize in Pediatrics and that I should call DeVoss Pediatric Hematology and Oncology if I have questions. When I told Matt about this, he said I should call the Pediatrician and go through Hailey's doctor, so I did. When the nurse called me back she said Dr. Davis was waiting to hear back from DeVoss. She expects to have heard back from them by Tuesday. The Dr. called me personally that evening. First, she asked me to describe Hailey's night sweats. I told her everything again. Then she told me that DeVoss said that they would have run the same tests at this point and that we will wait and see and I should call back mid to end of next week if she continues to sweat and we'd move forward then. CT scans expose you to a lot of radiation, and if it's not absolutely necessary you should avoid this. Unfortunately, if there aren't any obviously visible or palpable lymph nodes it's the only way to see if there are any enlarged lymph nodes elsewhere. Lymphoma doesn't show up in blood work.
Ok, I'm good with that - after all it could still be from the Virus she had. That night she was wet. Sat and Sunday she was dry and when I say dry I mean her head was sweaty and body clammy, but her clothes and sheets weren't really wet. Monday night her top sheet needed to be changed and she had sweat droplets on her arms, legs and chest. Her shirt was wet around her stomach. Tuesday dry. I didn't call the office on Wednesday bc I'm worried they are getting annoyed with me. I tend to be a worry wort and probably call the office more than the average parent I imagine and besides, they said mid to end of next week and she wasn't wet Tuesday night. Wednesday she was sweating again... this just isn't normal. She still only sleeps in under shirt and with one sheet.
I called the office on Thursday morning and left the message with the nurse. The nurse called me back in the afternoon saying that the Dr. is referring Hailey to DeVoss Pediatric Hematology and Oncology. I asked how long it would take to find out when our appointment is. And she said to call back on Monday if I hadn't heard anything yet. So, today I sit here and wait, because I didn't hear back on Friday. I'm actually kind of surprised they wouldn't run some other tests i.e. diabetes, thyroid etc. before sending us to Oncology. But hey, I'm not complaining. At least they are doing something. It's not nearly as scary as it sounds either, because Hailey does not appear sick in any way shape or form. She just sweats at night. No fevers and she has appetite.
I know it can't be normal to be sweating like that, but I wouldn't be surprised if they didn't find anything - and that's of course what I'm hoping for.
Matt had a follow up CT scan last week Tuesday and is going to get results from Dr. Gribbin this Tuesday.
What are the odds that Matt's child would also have lymphoma? Well, I've read it's only 5 times more like for a child of someone who had lymphoma to get lymphoma than someone out of the general population.
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/facts.pdf
Children. Lymphoma (Hodgkin lymphoma, 7.2 percent;
NHL, 6.6 percent) is the third most common cancer in
children 0-19 years of age.
• In 2010, children younger than 15 years will constitute
3.8 percent of all cases of Hodgkin lymphoma expected
to be diagnosed and 4.3 percent of all NHL cases
expected to be diagnosed. The number of cases expected
to be diagnosed in children younger than 15 years is 460
for NHL and 406 for Hodgkin lymphoma.
• The incidence of Hodgkin lymphoma among
young people under 20 years was 1.2 per 100,000
children in 2007.
So, I will hopefully find re-assurance withing the next week or two that Hailey is truly as healthy as she appears :) and of course I will post Matt's results from last week's CT scan Tuesday evening.
Matt was taking a urine sample to the lab, because she has Urinary Reflux and when she gets a fever without other symptoms or with vomiting we check to make sure she doesn't have a urinary tract infection. At the doctor's office the strep test came back negative, but the doctor noticed blisters/ulcers in her throat and diagnosed her with herpangina (it's related to foot, hand, mouth disease without the blisters on hands and feet - kind of like chickenpox of the throat). I took her home and her fever went away that afternoon and did not return. She never did complain of a sore throat.
The next evening, I went to check on both girls as I always do before going to bed and on the way downstairs I noticed that my pants were wet, where I was sitting on Hailey's bed. At first, I thought she had an accident and I got her up to go potty and I changed her sheets and blanket. Then I realized that her undies weren't that wet, but her undershirt was drenched and I didn't smell any pee. It was sweat.
The next two nights she was also very wet. I had made her sleep in underpants and undershirt and only had a sheet on her. Sunday night I finally put pull ups on her just to be sure she wasn't having accidents. I opened her window (it was in the low 50's that night) we set the furnace down to 69 (we usually keep it around 71). She was soaking wet again that night and her pull ups were dry.
I called the Dr. office on Monday and we got an appointment that evening. Matt met me with Hailey at the dr office after work. He thinks it's from the virus she had. However, he sent us to the lab to run 3 different blood tests (CBC, something lactase and I can't remember the third). They also took x-rays of her feet, because she's been saying her heels hurt when she walks on them, not at night though, and during recess she tried to find places to sit, because they've been so sore.
That night (Monday) she wasn't very wet. A little sweaty but not bad. She has always been a bit of a sweaty kid at night - her hair is often wet. I've thought it to be unusual before, but when kids are little their bodies aren't really good at regulating their temperature yet. However, she should be growing out of that by now.
Next day, the results came back normal for blood work and x-rays. I called the office to let them know that Hailey had 3 big spots of pin needle bruising on her back and that she can't recall getting hurt. He wasn't concerned, and said I should call back if she has unexplained bruising more frequently. Matt thinks that Sylvia was playing horse with Hailey and was riding her back :) I'm thinking he's right.
Again she was fairly dry Wednesday night. Thursday night she kept sweating between 9 and 11pm. Her body, arms and hand left wet spots on her sheets. I took pictures.
Friday morning, I call Dr. Gribbin's office to see what he thinks. The office called me back leaving a VM on my cell phone saying that they don't specialize in Pediatrics and that I should call DeVoss Pediatric Hematology and Oncology if I have questions. When I told Matt about this, he said I should call the Pediatrician and go through Hailey's doctor, so I did. When the nurse called me back she said Dr. Davis was waiting to hear back from DeVoss. She expects to have heard back from them by Tuesday. The Dr. called me personally that evening. First, she asked me to describe Hailey's night sweats. I told her everything again. Then she told me that DeVoss said that they would have run the same tests at this point and that we will wait and see and I should call back mid to end of next week if she continues to sweat and we'd move forward then. CT scans expose you to a lot of radiation, and if it's not absolutely necessary you should avoid this. Unfortunately, if there aren't any obviously visible or palpable lymph nodes it's the only way to see if there are any enlarged lymph nodes elsewhere. Lymphoma doesn't show up in blood work.
Ok, I'm good with that - after all it could still be from the Virus she had. That night she was wet. Sat and Sunday she was dry and when I say dry I mean her head was sweaty and body clammy, but her clothes and sheets weren't really wet. Monday night her top sheet needed to be changed and she had sweat droplets on her arms, legs and chest. Her shirt was wet around her stomach. Tuesday dry. I didn't call the office on Wednesday bc I'm worried they are getting annoyed with me. I tend to be a worry wort and probably call the office more than the average parent I imagine and besides, they said mid to end of next week and she wasn't wet Tuesday night. Wednesday she was sweating again... this just isn't normal. She still only sleeps in under shirt and with one sheet.
I called the office on Thursday morning and left the message with the nurse. The nurse called me back in the afternoon saying that the Dr. is referring Hailey to DeVoss Pediatric Hematology and Oncology. I asked how long it would take to find out when our appointment is. And she said to call back on Monday if I hadn't heard anything yet. So, today I sit here and wait, because I didn't hear back on Friday. I'm actually kind of surprised they wouldn't run some other tests i.e. diabetes, thyroid etc. before sending us to Oncology. But hey, I'm not complaining. At least they are doing something. It's not nearly as scary as it sounds either, because Hailey does not appear sick in any way shape or form. She just sweats at night. No fevers and she has appetite.
I know it can't be normal to be sweating like that, but I wouldn't be surprised if they didn't find anything - and that's of course what I'm hoping for.
Matt had a follow up CT scan last week Tuesday and is going to get results from Dr. Gribbin this Tuesday.
What are the odds that Matt's child would also have lymphoma? Well, I've read it's only 5 times more like for a child of someone who had lymphoma to get lymphoma than someone out of the general population.
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/facts.pdf
Children. Lymphoma (Hodgkin lymphoma, 7.2 percent;
NHL, 6.6 percent) is the third most common cancer in
children 0-19 years of age.
• In 2010, children younger than 15 years will constitute
3.8 percent of all cases of Hodgkin lymphoma expected
to be diagnosed and 4.3 percent of all NHL cases
expected to be diagnosed. The number of cases expected
to be diagnosed in children younger than 15 years is 460
for NHL and 406 for Hodgkin lymphoma.
• The incidence of Hodgkin lymphoma among
young people under 20 years was 1.2 per 100,000
children in 2007.
So, I will hopefully find re-assurance withing the next week or two that Hailey is truly as healthy as she appears :) and of course I will post Matt's results from last week's CT scan Tuesday evening.
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