8 year old son with a Wilms Tumour

Tanya,

My son is also undergoing treatment for Wilms, he has undergone lots of chemo and also suffered from high temperature. After loads of tests and antibiotics, it turned out to be tumor related and the fever went after about 2 weeks (the tumor had shrunk).

Our son (he's 3) has Bilateral wilms and has undergone one operation that has removed two tumors from his right kidney. We are now fighting to get the single tumor on his other kidney smaller as it grew dramatically when the chemo was stopped for the operation.

I hope the operation goes well on the 22nd, I believe that if they remove it completely it will not be too long that he is in the theatre. The first operation he had was really tough to see, but you must believe in the surgeons and their ability. The recuperation took about 10 days, and you can start to see progress as the various tubes are removed.

Good luck,

Michael

Hello. My 11m old daughter was diagnosed with wilms in her right kidney. After the port a cath was fitted and the biopsy done, she started developing high temperature of almost 41C and has had them for 2 weeks now. Had 2 rounds of chemo and been in hospital all the time with lots of different types of anti biotics which are not doing anything. All the blood, urine and throat swab cultures are negative but the temperatures continue. Surgery is planned for 20 days time with 2 more rounds of chemo left.,and we just want the tumour removed and out of her system. Am glad to hear that others have experiences these temps too, and glad to hear that in your case, they stopped after about 2 weeks. We pray that the same happens in our case.

Good luck to you both with treatment.

Sam

Hi

My sons surgery did go ahead on the 22nd of July as planned.  He had his central line removed the week previous but had no affect on the temperatures. So continued to have high temperatures which were only coming down from IV Paracetamol as oral had no affect.  And still suffered temperature spikes post op for 3 days.  The tumour was successfuly removed along with the kidney after a long 6 hours opeation.  He made an amazing recovery and was alowed home last Wednesday just 5 days after. Thank fully the temperature have now gone (for now) so it seemed he was so ill due to the tumour. It was removed in one piece with no signs of breaking down :)

We returned for the histology results yesterday and it has been staged at a stage 1 intermidiate risk.  The lymph nodes were clear but although it's stage 1 due to the tumour containing live cancer cells it has been classed as intermediate.  But the consultant has reassured us that only 1 third contained live cells.  The rest was dead tissue.  So results all very positive.  But.......... The tumour has been sent for a second opinion for staging due to how he was clinically behaving prior to surgery.  So we still need to wait for that result.  Which could mean the difference of 4 week cycle of chemo of the 2 drugs he has already recieved or a 16 week cycle with a 3rd drug introduced.

He is due to have a central line put back in this Friday and immediatly restart chemo treatment. Either way.

It's all been excellent news thus far, although still feeling quite apprehnsive after being told it has been sent away for 2nd opinion. Fingers crossed it stays at a stage 1 and the end of treatment is in sight.

Great to hear that the operation went well. longest 6 hours of your life I can imagine. Fingers crossed that the histology stays the same.

My son had his second operation on the 28th and they also removed the whole kidney along with the tumour. We're waiting for the histology now, the other kidney had two tumours and one was an intermediate stage. We're hoping that the post op chemo will be a short cycle, 16 weeks would be tough now. He has received the 3rd drug before (I guess you mean doxorubicin) it is stronger, but was not too much different in how he reacted to the others so try not to worry too much if that is what is required.

It's a hard feeling as he now has only 40% of one kidney remaining, and we know that in the future he will need a transplant, but for the next few years he can live a normal life without the prospect of dialysis. The good feeling is that they have removed all the tumours.

His temperature was related to the tumour, they used some steroids for a few days before his second operation that did bring the temperature under control.

Good luck for the next step.

Am glad to hear that the operations went well. My daughter's operation is on Friday. Fortunately after 3 weeks, the 40C+ temps stopped - must have been some of the anti biotics or anti fungal they were giving her which did the trick. Had an MRI last week and it showed that after 4 weeks of chemo, the tumour hasn't shrunk but is dead which is great news. Just got to remove the kidney and tumour now which is still risky, but if all goes well, it may only be 4 weeks of chemo after surgery - we hope. But after the 4th round of chemo last Monday, my daughter has just stopped eating and drinking and we are having to give everything by NG tube - has anyone faced this either before or after surgery? Do they slowly return back to food? Thanks

Food is a continuous challenge. It's really difficult to get our son to eat enough, although we believe the food in the hospital doesn't really help.....

We give him skandi shakes daily as they are packed with protein and a good way to get something into him.

Looking forwards to getting him home so that we can start to feed him up again. The recovery time from the total nephrectomy is much faster than for a partial one, he was taking some early steps about 6 days after the operation.

Good luck for friday.

Hi Tanya,

my son was 4 when diagnosed with bilateral wilms. Won’t bog you down with all the details but his temperature spiked every single time he had chemo but once pre surgery chemo was finished and tumours were removed he did not have temperatures following. Doctors then concluded it was his body’s response to the chemo successfully breaking down the tumours that caused temperature spikes so was a good thing in fact x

Hi Tanya 

i know you posted this a while ago but my sons going through this now we been in hospital with a high temperature 40 plus for 5 days now and every test is coming back ok is this normal x

Hi Sorry to read about your son.  Can I suggest you start a new fresh post to give it better visibility?  

Just that when you see "FormerMember" as a name label, it means the person has removed their login and left the forum.  They won;t see your question.  That isn;t to say there aren't others on here with relevent experience.    Everyone in this post apart from you and I are not current members. 

I wish you all the best.