CadensMom
12-23-2014, 04:56 PM
Good Evening everyone,
This evening I received confirmation that my son does have Wegeners. A little history- last year Thanksgiving 2013. My son broke his arm. He did not cry nor complain. I just saw that he wasn't using it. That next morning we went to get an x-ray which showed a very large tumor from the marrow out. His bone was paper thin. Initially it was thought to be osteosarcom. After seeing a specialist they believed it was benign. A simple bone cyst (horrible name). He was 7. After Christmas of 2013 they removed the tumor, oh and did a marrow transplant, bone graft and put in a telescopic rod.
Less then 12hrs after surgery my son, Caden, said he wanted to go home. Not once did he cry. Not once did he complain of pain. The dr. Laughed and said if you meet your discharge orders you can go home. 12 hrs after that he did. Not a single pain med at home either. I forced him to take tylenol.
Now it is 2 days before Thanksgiving this year, 2014. Caden complains of upper right abdominal pain. I google and decide he has appendicitis. We go to the hospital, he never complains so I believe him. A chest xray reveals "multiple metastatic masses in both lungs" That is what the Dr. Tells me. But his arm was benign how are these metastatic! We are transfered immediately to a Children's hospital.
At the childrens hospital they believed it to be fungal. After a bone scan, ct, and numerous lab test (none including the anca). Infectious disease, oncology and pulmonogy doctors couldn't pin it. None of the labs made sense! On Thanksgiving a needle biopsy was done. I was then informed that the nodules have grown in size, slightly but still grown. we are discharged the same day.
We wait and wait and wait. Its not benign yay! But what is it! Follow up xray now reveals a haze all over his lungs. Still he is asyptomatic. While waiting I decide I need sleep. To get that I need answers. I schedule an appointment with an amazing oncologist at Miami Children's, Dr. DeAngulo. The same day we go to see him the pathology is back from a pulmonology pathologist out of New York. She describes it as interesting....... and list everything that is seen. Still that means nothing to the dr's by our house.
I bring that to DeAngulo. He reviews all the labs and everything i brought with us. He says i dont think its me that you need to see. I have a gut that its Wegeners. That day he admitted us at Miami Childrens. Next morning a thorescopic biopsy is done on the largest lower right nodule. 1 chest tube followed by a pneumothorax we are now home. And I just received the confirmation phone call.
I appreciate Dr. DeAngulo for heading this. With it not even being his specialty. He truly is amazing.
Now to see the rheumatologist and pulmonolgist. Do we go straight for methotrexate?
I have had to kick and beg alot to get where we are now. We caught it early. No syptoms! I want to hit this right and do what we can. Any advice is appreciated!
Thank you, Erica.
This evening I received confirmation that my son does have Wegeners. A little history- last year Thanksgiving 2013. My son broke his arm. He did not cry nor complain. I just saw that he wasn't using it. That next morning we went to get an x-ray which showed a very large tumor from the marrow out. His bone was paper thin. Initially it was thought to be osteosarcom. After seeing a specialist they believed it was benign. A simple bone cyst (horrible name). He was 7. After Christmas of 2013 they removed the tumor, oh and did a marrow transplant, bone graft and put in a telescopic rod.
Less then 12hrs after surgery my son, Caden, said he wanted to go home. Not once did he cry. Not once did he complain of pain. The dr. Laughed and said if you meet your discharge orders you can go home. 12 hrs after that he did. Not a single pain med at home either. I forced him to take tylenol.
Now it is 2 days before Thanksgiving this year, 2014. Caden complains of upper right abdominal pain. I google and decide he has appendicitis. We go to the hospital, he never complains so I believe him. A chest xray reveals "multiple metastatic masses in both lungs" That is what the Dr. Tells me. But his arm was benign how are these metastatic! We are transfered immediately to a Children's hospital.
At the childrens hospital they believed it to be fungal. After a bone scan, ct, and numerous lab test (none including the anca). Infectious disease, oncology and pulmonogy doctors couldn't pin it. None of the labs made sense! On Thanksgiving a needle biopsy was done. I was then informed that the nodules have grown in size, slightly but still grown. we are discharged the same day.
We wait and wait and wait. Its not benign yay! But what is it! Follow up xray now reveals a haze all over his lungs. Still he is asyptomatic. While waiting I decide I need sleep. To get that I need answers. I schedule an appointment with an amazing oncologist at Miami Children's, Dr. DeAngulo. The same day we go to see him the pathology is back from a pulmonology pathologist out of New York. She describes it as interesting....... and list everything that is seen. Still that means nothing to the dr's by our house.
I bring that to DeAngulo. He reviews all the labs and everything i brought with us. He says i dont think its me that you need to see. I have a gut that its Wegeners. That day he admitted us at Miami Childrens. Next morning a thorescopic biopsy is done on the largest lower right nodule. 1 chest tube followed by a pneumothorax we are now home. And I just received the confirmation phone call.
I appreciate Dr. DeAngulo for heading this. With it not even being his specialty. He truly is amazing.
Now to see the rheumatologist and pulmonolgist. Do we go straight for methotrexate?
I have had to kick and beg alot to get where we are now. We caught it early. No syptoms! I want to hit this right and do what we can. Any advice is appreciated!
Thank you, Erica.