Lupus nephritis

[1muttsfan]

Medicine is absolutely not an exact science. We are each very different from each other, and doctors (and nurses) can only start at one point and work their way through all the possibilities in drugs, dosages, response to treatment, and end results. With the knowlege that some patients, despite all their hard work, will not make it - and not allow that knowlege to so sadden them that they can no longer be effective doctors. I imagine it is very difficult to look at a young girl and watch her struggle, and not think about your own children, nieces, cousins, and wonder if something like that would happen to them. You could not pay me enough to be an oncologist, particlularly a pediatric one, but I am so glad that there are those who are willing to do it.

Hope she keeps her spirits up - we are all pulling for her!

 

[Bunnylady]

After two weeks, I'll bet she's ready to go home! But, one day at a time.

Still praying.

 

[sourland]

One day at a time. We're heading down that way tomorrow. If she is released early, we will divert to their home in Annapolis. If she does not get released or gets releaed later in the day, we will visit her at the hospital. I think that her Dad is starting to burn out. He WANTS his daughter home.

 

[Bunnylady]

Wishing you a safe journey and a pleasant visit, and more good news!

 

[sourland]

Visited Jennifer yesterday - she was a sulky, irritated, disappointed teen ager. She wanted OUT of the hospital, and they were reluctant to release her. The Princess with her refusal to accept such 'attitude' turned her around and she was more upbeat by the time we left. As of last night she was scheduled to come home this morning. It's been a long 2 weeks +. Our son has lost about 15 pounds, but has stepped up and is dealing with all the stress like a trooper. We are proud of him. His patience amazes me.

My post # 29 is incorrect. The infusion she received was not for the Lupus. It is actually chemo to treat a "proliferation of abnormal kidney cells" more doctor speak. They say she does not have cancer, but I don't like the sounds of that 'doctor speak'. She will be receiving a monthly infusion which includes an overnight at the hospital for as much as 1 time each of the next 6 months.

Her Lupus flare up is under control and her medication has been adjusted to a hopefully more easily taken regimen. All good progress, but the battle is still on. It's times like this that make me wish that we lived closer. Again, thanks for all of the support.

 

[1muttsfan]

and

and

 

[Bunnylady]

Just when you think you know the game, they change the rules, huh?

Sounds like you have a new appreciation for the man that you raised - so that's one good thing that has come out of this.

Still praying for all of you!

 

[melissamerry]

I just caught wind of this thread. I'm 21 years old and I found out that I have Lupus a little over a year ago. I feel for your daughter and your family's pain because it really is just quite horrible. I would also like to say that dietary changes and exercise have helped keep my flare ups to a minimum. I cut out gluten and a lot of dairy and almost anything that is processed.

As for exercising, I know it can be painful so I tend to do laps in a pool. I also do a lot of dancing. I really do feel that this helps me in believing that everything is going to be ok.

Have hope for your child and be strong. My parents have helped me through so much and I really am grateful for everything that they have done. I really hope everything turns out well!!!!

 

[sourland]

Well, Jennifer is back in the hospital.

She developed abdominal pain yesterday which is apparently caused by a bladder infection. Because her white cell count is so low (a result of the chemo), they are going to keep her until things improve. We were already planning on making the trip on Sat. to celebrate her sister's birthday. Hopefully Jen will be home - if not we will visit her at the hospital.

 

[1muttsfan]

Dang! That is too bad . Glad you can go and support the family.