Ya'll save a prayer for my nephew

[minkydog]

He's only 20. Last week he was admitted to the hospital for dehydration following the "stomach flu." Except it wasn't the stomach flu. He has a 12cm tumor on his liver. Shortly after that there was a biopsy which revealed Non-Hodgkin's Lymphoma, Burkitt's tumor. It's apparently very aggressive. He has cells in his spinal fluid and in the bone marrow, as well. I'm not sure of the plan of care (I'm getting my info 3rd hand, from non-medical people.) But that much I do know.

I'm really worried about him. He lives in the mountains and is being treated at the local hospital. My mother and I have recommended Duke(the nearest big medical center, several hours away.) They had let him go Friday, but called him back to the hospital Saturday when a blood culture came back with Staph. HIs port is infected, as is his previous IV site. THis kid is a mess!

I don't know much about NHL, but I googled it and got some basic info. I'm a peds nurse, but have no background at all in oncology, so this is pretty scary stuff. His parents (my bro and his ex) are very upset, especially his mother. SHe has him dead, buried, and movin' on. DBro can't handle hospitals, so he's avoiding. THankfully, DNephew has a partner who really cares for him and is seeing that he gets what he needs. Too bad his parents can't be so mature. But I'll give them a pass. Grief can make us act in crazy ways.

 

[pilesoflaundry]

Many prayers sent

 

[Holly]

Prayers for your nephew

 

[golfgal]

Poor kid, many prayers and good thoughts--for your WHOLE family.

 

[4nana]

How frightening, prayers being sent for your poor nephew and family . I do hope they take your advise and send him to a larger experienced medical center asap. No doubt his inexperienced parents are in shock and scared for their son, we each handle illness and grief in our own way . Hopefully they'll all come together and be the strong supportive force he needs at this critical time. Take care Minky.

 

[Art 1]

Sorry to hear.

 

[MsDisney23]

Sending may Prayer's. Please keep us updated.

 

[clh2]

One of my cousin's wife had NHL, and she has been cancer free for ~6 years now! They had just had a baby when she was diagnosed, and since her treatment ended, she has had 2 more children.

They lived in Minnesota, in the city of a MAJOR clinic, that treats people from all over the world. (Not mentioning any names...)

Please, please suggest that your nephew be treated at a major cancer center, as others have suggested.

Prayers being said...

 

[snoopybabe]

Saying prayers for your nephew and family.

 

[bellebud]

saying prayers for your nephew. I hope he gets to a larger medical center or cancer center. Keep us updated.

 

[WhateverLolaWants]

I'm sorry to hear about your nephew. My father has NHL (different subtype, though), but I have read some stuff about Burkitt's in passing. A tough battle, but one that can definitely be won. There is a forum that is very informative that I use in my research - http://forums.lymphoma.com. My thoughts are with your family and I hope he gets the care he needs.

 

[ugadog99]

Keeping your nephew and the family in my thoughts, minkydog.

 

[disney1990]

He's only 20. Last week he was admitted to the hospital for dehydration following the "stomach flu." Except it wasn't the stomach flu. He has a 12cm tumor on his liver. Shortly after that there was a biopsy which revealed Non-Hodgkin's Lymphoma, Burkitt's tumor. It's apparently very aggressive. He has cells in his spinal fluid and in the bone marrow, as well. I'm not sure of the plan of care (I'm getting my info 3rd hand, from non-medical people.) But that much I do know.

I'm really worried about him. He lives in the mountains and is being treated at the local hospital. My mother and I have recommended Duke(the nearest big medical center, several hours away.) They had let him go Friday, but called him back to the hospital Saturday when a blood culture came back with Staph. HIs port is infected, as is his previous IV site. THis kid is a mess!

I don't know much about NHL, but I googled it and got some basic info. I'm a peds nurse, but have no background at all in oncology, so this is pretty scary stuff. His parents (my bro and his ex) are very upset, especially his mother. SHe has him dead, buried, and movin' on. DBro can't handle hospitals, so he's avoiding. THankfully, DNephew has a partner who really cares for him and is seeing that he gets what he needs. Too bad his parents can't be so mature. But I'll give them a pass. Grief can make us act in crazy ways.

Please, please insist that your nephew be treated at a major hospital that can deal with his diagnosis. This is exactly what our granddaughter had at age 7 (3 years ago). The tumor grew so quickly that it wrapped around all of her internal organs. When they went to open her up for a biopsy, the tumor came out of the incision. The had to pack her with coangulant drugs, push the tumor back in and sew her back up. Becuse of the loss of so much blood, we almost lost her. Then she developed a C-dif infection and again her life was in danger. They eventually found a chemo drug cocktail that totally shrunk the tumor, but she had followup surgery to remove several of her organs - gallbladder, appendix, etc. She was treated at Childrens National Medical Center in Washington, DC where she now goes every 6 months for a complete series of tests and so far is testing cancer free. Please get your nephew to a hospital that is used to 1) dealing with young adults and 2) dealing with this particular form of cancer which primarily strikes boys and is very rare, only about 300 cases in a year world wide. If you have any questions, please send me a PM.

 

[Jennasis]

Oh dear! Prayers sent for him and the whole family!

 

[C.Ann]

So young to have to deal with something so serious.. I will certainly keep him in my prayers..

 

[minniebeth]

Your nephew and all of your family will be in my thoughts and prayers.

 

[auntie]

Added prayers for your nephew.

 

[mommasita]

Praying strongly here.

Your family has been through so much. I will keep you all in my prayers. This poor young man

 

[minkydog]

Thank you so much for your thoughts and prayers. This is a difficult situation for us all. DNephew doesn't get along much with his mother or father(they were not good parents on any level.) He lives with his partner, who really takes care of him. DN has given him medical POA. So most of our info comes through him. He's a nice guy, so I think we're getting the dope.

I wish I could convince them to go to Duke. My mother and I are RNs and we know the value of seeking treatment from a specialty center. We have both recommended that he go to Duke or Emory(Atlanta), which is only 3 hours away. Unfortunately, they are listening to their local (Hendersonville,NC) doctors who are telling them they know how to treat. Maybe they do, but Hendersonville is next to the middle of nowhere and I don't have a lot of faith in their medical facilities (at least, not as much faith as this kind of diagnosis requires.)

Ultimately, it's not up to me, frustrating as that is. I just want to hop in the car, run up there and TAKE CHARGE. That's the nurse in me. But we all have to sit back and let him make his own decisions. He trusts only a few people. I hope they will continue to update my mother, at least. It's so hard because the two of us want to ask a lot of questions and they, being non-medical people, just don't have answers. They don't know the name of the chemo drugs or what kind of scans they have done or what the antibiotics are. Not that it's our business, I guess. But it would help us understand what's happening if we had more information.

Thank you all for your kind words and for praying. I really appreciate it.

 

[Tracy Savage]

Prayers sent!