If you know me....then you know a child fighting cancer.
Showing posts with label neural tumor. Show all posts
Showing posts with label neural tumor. Show all posts
Tuesday, September 6, 2011
Friday, August 27, 2010
Ready for School......
Miss Haven went to see her doctors on Monday - had to get one more boost of chemo before starting school. She did great accessing her port and doing her labs. 
She slept through most of the dose. Which is good because it's such a long day when she has treatments. They finished around 5pm and I called to see if they wanted to meet and eat somewhere but Miss Haven said she was too tired. Was a good thing too - both she and I got home and slept until later that evening. :)
Thursday was back to school night. We got to meet Haven's 1st grade teacher, Mrs. Petz. She really likes her teacher's name and said she was really nice. I think Haven likes her desk and purple pencil holder as well. We got to see some of the books they would be working in this year and learn about how the homework will work. Haven is very excited for school to start on Monday.Haven has really pushed to go full days this year. We talked to the Principal last night and she agreed that Haven can try the full days and see how it goes. I think she is going to have a blast this year. Plus she really wants to be able to be part of the art and music classes.
We have declared tonight a party night - one last movie fest before school starts. So Miss Haven is counting down......
Monday, March 1, 2010
Next appts
Haven went to Oncology on Friday. They were very excited to see her. I bought her a new outfit to wear and she was decked out in black and hot pink - even socks and shoes matched! She was very excited to go in and see everyone. I put her port lotion on before she left so that by the time they got there her chest would be numb. Not like it matters for pain but she can feel the pressure and I think it just gives her some comfort when seeing that needle come towards her chest. To relieve my stress and anxiety - I do not know Haven's numbers anymore. I am usually informed if something is out of the ordinary or I get a report from Haven's pediatrician.
Haven's immune system is holding pretty well - although I'm not exactly sure what that means. She will receive another dose of IVIG in a few weeks to help give her a boost. When talking with the doctors they are always amazed at Haven and how well she has handled all the toxic medications they have thrown at her. Her body just fights right back. She has a force field around her that is impenetrable. It's amazing because I've never even taken Haven in for a cold or flu and she hasn't had an immune system for 2 years.
We had originally thought that the chemo treatments were bringing back the sensation of pain but over time I have watched Haven and now know this is not the case. When she should be hurt, screaming, and crying she just gets mad and yells at me for being concerned. This weekend she bumped her head on the coffee table while trying to get the dog - left a little mark - but if I wouldn't have heard her hit the table I would've never known by her reaction. Then while playing the Wii she bashed her hand in to the corner of the table so hard that it made me jump off the couch. She kept on playing like nothing happened and when I asked to see her hand she just got mad at me. So I left it alone.
We have our 6 month sleep study this weekend at Mt. Washington. Haven has to be down there by 8pm and is usually finished being wired up by 10pm. Then I should arrive back home by midnight - Kris always stays with her because I can handle the 6 hours of driving better - Then I will get back up at 4am to be there by 5:30 to pick them up. Our Sunday is always a waste after sleep studies because everyone tries to catch up on sleep but I am happy they have always accommodated me with a Saturday test.
Sunday will be a recovery day and then Monday Haven has to be at MRI by 7am. This will be her MRI for the Brain, Abdomen, and Pelvis. The Brain was added at my request due to her high prolactin levels. Abdomen and pelvis will be her normal 4 month scans of the cancer and tumor areas. This ensures us that her tumor is still stable and nothing has moved around.
After this Haven will go on an every 6 month MRI scan and every 4 week Oncology visit. The goal is to still monitor everything she does and everything that changes but to get her out of the patient mentality. In hopes that her will and mind are more powerful than the disease and she can begin to grow and her body can accept the changes that the chemo has done to her ROHHAD symptoms.
Pulmonary and Endocrine are still seen every 6 months - so we'll set up an appt with Pulmonary after the sleep study. We have an Endocrine appointment but I just can't remember when. I'm sure it's this month some time! :) I'll have to call over to their office for a reminder!
That is about it for our updates. Love to all!
Haven's immune system is holding pretty well - although I'm not exactly sure what that means. She will receive another dose of IVIG in a few weeks to help give her a boost. When talking with the doctors they are always amazed at Haven and how well she has handled all the toxic medications they have thrown at her. Her body just fights right back. She has a force field around her that is impenetrable. It's amazing because I've never even taken Haven in for a cold or flu and she hasn't had an immune system for 2 years.
We had originally thought that the chemo treatments were bringing back the sensation of pain but over time I have watched Haven and now know this is not the case. When she should be hurt, screaming, and crying she just gets mad and yells at me for being concerned. This weekend she bumped her head on the coffee table while trying to get the dog - left a little mark - but if I wouldn't have heard her hit the table I would've never known by her reaction. Then while playing the Wii she bashed her hand in to the corner of the table so hard that it made me jump off the couch. She kept on playing like nothing happened and when I asked to see her hand she just got mad at me. So I left it alone.
We have our 6 month sleep study this weekend at Mt. Washington. Haven has to be down there by 8pm and is usually finished being wired up by 10pm. Then I should arrive back home by midnight - Kris always stays with her because I can handle the 6 hours of driving better - Then I will get back up at 4am to be there by 5:30 to pick them up. Our Sunday is always a waste after sleep studies because everyone tries to catch up on sleep but I am happy they have always accommodated me with a Saturday test.
Sunday will be a recovery day and then Monday Haven has to be at MRI by 7am. This will be her MRI for the Brain, Abdomen, and Pelvis. The Brain was added at my request due to her high prolactin levels. Abdomen and pelvis will be her normal 4 month scans of the cancer and tumor areas. This ensures us that her tumor is still stable and nothing has moved around.
After this Haven will go on an every 6 month MRI scan and every 4 week Oncology visit. The goal is to still monitor everything she does and everything that changes but to get her out of the patient mentality. In hopes that her will and mind are more powerful than the disease and she can begin to grow and her body can accept the changes that the chemo has done to her ROHHAD symptoms.
Pulmonary and Endocrine are still seen every 6 months - so we'll set up an appt with Pulmonary after the sleep study. We have an Endocrine appointment but I just can't remember when. I'm sure it's this month some time! :) I'll have to call over to their office for a reminder!
That is about it for our updates. Love to all!
Thursday, April 23, 2009
ROHHADNET Syndrome
Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation and Neural Tumor Syndrome
Whew....say that 1 time fast!!! Everytime I go to a new doctor I have to! Then I have to explain it and start at my pregnancy all the way through her first 5 years.
This is what Haven would be diagnosed with IF doctors agreed. There are articles on both and rebuttals on both. It really all depends on the "type" of doctors I think you meet with.
Our doctors believe in the ROHHADNET diagnosis over just ROHHAD. They believe all children with ROHHAD have had or have neural tumors. Some may be just so small you can't detect them - even with an MRI. Or maybe you've read that Neuroblastoma is one of the rare human malignancies known to demonstrate spontaneous regression. In this case you have a tumor, never know it, and by the time something else shows up the tumor is gone. If that's the case, you will never find a tumor.
So when we go in to a doctor I realized last week that I can't just say "Neuroblastoma" as a general diagnosis of her cancer. There are 3 types and it's important to know which type because "Ganglio" is the one known to be associated with ROHHAD. Pulmonary explained to me that this is a very important note and I shouldn't use Neuroblastoma in conjunction with ROHHAD.
So I felt this was an important part to share....as I dive deeper and deeper in to our medical world.
Whew....say that 1 time fast!!! Everytime I go to a new doctor I have to! Then I have to explain it and start at my pregnancy all the way through her first 5 years.
This is what Haven would be diagnosed with IF doctors agreed. There are articles on both and rebuttals on both. It really all depends on the "type" of doctors I think you meet with.
Our doctors believe in the ROHHADNET diagnosis over just ROHHAD. They believe all children with ROHHAD have had or have neural tumors. Some may be just so small you can't detect them - even with an MRI. Or maybe you've read that Neuroblastoma is one of the rare human malignancies known to demonstrate spontaneous regression. In this case you have a tumor, never know it, and by the time something else shows up the tumor is gone. If that's the case, you will never find a tumor.
So when we go in to a doctor I realized last week that I can't just say "Neuroblastoma" as a general diagnosis of her cancer. There are 3 types and it's important to know which type because "Ganglio" is the one known to be associated with ROHHAD. Pulmonary explained to me that this is a very important note and I shouldn't use Neuroblastoma in conjunction with ROHHAD.
So I felt this was an important part to share....as I dive deeper and deeper in to our medical world.
Subscribe to:
Comments (Atom)
-
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
-
Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
