Brody's kidney function is improving

Brody's surgery to place an external nephrostomy tube went well.  He is feeling okay since the surgery and adjusting to having the tube and bag again.  

His lab results this morning showed significant improvement in his kidney function.   His creatinine was 2.5.  His potassium and phosphorus levels came down too.   He is no longer on a low potassium and low phosphorus diet.   He was very excited to hear this news this morning.  

Brody is upset about having an external nephrostomy tube again especially during the summer.   Swimming is one of his favorite things in the world to do and our pool water was just finally getting warm enough for Brody to swim in it.   He was looking forward to swimming in the pool this weekend.   He cannot swim though with an external nephrostomy tube.   He also loves showers and hates sponge baths.   He was trying not to cry last night when talking about all the things he hates about having an external nephrostomy tube.  

I wish I could tell him,  it's just temporary.   But we really do not know if he will ever not have the external nephrostomy tube again.   Right now,  it's looking like he will have it for awhile.  

The urologist does not think an internal stent is an option any longer unless the tumor gets significantly smaller. They think the kidney has been under stress for some time now from the tumor and that the internal stent hasn't been enough for awhile and we are just recently starting to see the effects of this stress.  

I asked if a debulking surgery would be a possibility.   The surgeon says there is too much involvement of major blood vessels in this area of the tumor.   It would be a very last resort option to do surgery to the tumor outside of the spinal column.  The surgeon felt there would be around a 50/50 chance that Brody would even survive such a surgery.   Surgical removal of the tumor in the spinal column is still an option though.   This is something Bill and I need to seriously consider.   It is not something I would consider right away.   Brody needs to heal from his current situation.   But,  it's something we need to weigh the pros and cons of soon.  Brody seems to be having more issues with incontinence lately and also his foot drop is much worse recently.   Maybe surgical removal of the tumor from the spinal column could help this.   Plus getting rid of any live area of the tumor is something we normally want to do whenever possible.  But there are certainly risks to do the surgery too.   For now,  we will observe his symptoms and see if they resolve and keep an eye on his tumor growth through frequent scans.   The tumor so far has not gotten larger since starting the HSV trial.   If we see progression then we would be more apt to consider surgery and switching to alternative treatment option (although we are quickly running out of options).  

I am upset for Brody that he has an external nephrostomy tube again with very little possibility of getting rid of it.   But,  I am so thankful that it's working and his kidney function is improving.   It gives us more time with Brody.   The reality of what we could have been facing instead is so much worse.   I will cherish every day I have with Brody.   Each day we get is a gift even if it's a "bad" day.