Seeking long term Survivors of Stage IV Wilms

wilms
I am in the same boat with my daughter. Can we share information about what we learn? She is stage 4 with mest to liver, both lungs, and one vertebrae. They removed her L kidney, we are still in hospital. bagbitocare at yahoo.com or facebook me tonya trejo bagby

thanks

Have Stage 4 Success News for you
Hi Moms. I know how horribly concerned you are. My son is 2.5 and was just diagnosed at Christmas '10 with Stage 4. He had his left kidney out and has nodules on both lungs. Desperate to find anything I could, I researched and researched. God has sent some angels with information to me...two friends of friends who reached out to me. BOTH stage 4, both included both lungs, one tumor wrapped around a huge main vein and the other, with the lungs and liver affected. BOTH have been successfully treated and BOTH are alive today and cancer free for a loooong time! One was diagnosed at 18 months and is now 16 years old and the other diagnosed at the rare age of 6 and is now 13!! Cancer free for 5 years --which means cured in this cancer type. Both are girls. I keep thinking--if stage 4 is only 10-15% of cases, why is it that the only two I have heard of were both stage 4. ?? I have since learned that two more children (friends of friends) have gone through this as well, but do not have the specifics just yet.

Hold on to your hope--I am!! Our wonderful Father in heaven will protect our children and give them the strength and ability to overcome the affliction. They will be healed! I know it! The stories are out there and medicine has come a long way. It's like our doctor says, "If a child HAS to have a cancer, this is the one you want." It's highly responsive to therapy. Our children will have a special testimony for Christ. Hang in there, honey! Know that there are other moms right beside you...you are not alone. :0)

carlysmami said:

wilms
I am in the same boat with my daughter. Can we share information about what we learn? She is stage 4 with mest to liver, both lungs, and one vertebrae. They removed her L kidney, we are still in hospital. bagbitocare at yahoo.com or facebook me tonya trejo bagby

thanks

Stage 4 Wilms
Carlysmami,

I know it has been a long time since this post, but my 9 year old daughter was diagnosed with stage 4 Wilms last month (Jan. 2012). It has metastasized to both lungs with nodules in both including one very large tumor in/on her right lung, it has completely taken over her right kidney and is wrapped around the blood vessel, it is in her lymph nodes including ones surrounding her heart and in her neck, but she has only a little on her liver. I am very scared and am looking to make contact with people who have experience with children's stage 4 wilms specifically.

She has not yet undergone her radical nephrectomy or resection of the largest tumor in her right lung as we are waiting for them to shrink down enough so that they will be safer to remove. Yesterday was her 5th week of chemo and she starts trial "Regimen M" on week 7.

I hope you get this and respond back to me. I really really want to hear your story and what treatment your child underwent and how it went. What advice do you have for me? I hope to hear from you.

~Amy

Bella07 said:

Have Stage 4 Success News for you
Hi Moms. I know how horribly concerned you are. My son is 2.5 and was just diagnosed at Christmas '10 with Stage 4. He had his left kidney out and has nodules on both lungs. Desperate to find anything I could, I researched and researched. God has sent some angels with information to me...two friends of friends who reached out to me. BOTH stage 4, both included both lungs, one tumor wrapped around a huge main vein and the other, with the lungs and liver affected. BOTH have been successfully treated and BOTH are alive today and cancer free for a loooong time! One was diagnosed at 18 months and is now 16 years old and the other diagnosed at the rare age of 6 and is now 13!! Cancer free for 5 years --which means cured in this cancer type. Both are girls. I keep thinking--if stage 4 is only 10-15% of cases, why is it that the only two I have heard of were both stage 4. ?? I have since learned that two more children (friends of friends) have gone through this as well, but do not have the specifics just yet.

Hold on to your hope--I am!! Our wonderful Father in heaven will protect our children and give them the strength and ability to overcome the affliction. They will be healed! I know it! The stories are out there and medicine has come a long way. It's like our doctor says, "If a child HAS to have a cancer, this is the one you want." It's highly responsive to therapy. Our children will have a special testimony for Christ. Hang in there, honey! Know that there are other moms right beside you...you are not alone. :0)

hello
Hello parents, my name is Chantel. My son which is 2 years old was diagnosed with Wilms Tumor Stage 4 back on December 22, 2011. I am a nervous wreck! He hasn't had his surgery to remove the tumor or kidney yet. I to would like to hear some positive outcomes or great advice on this journey my family and I are going through. Thanks in advance!

Stage IV Survivor. 19 Years old.
I understand this post is from 2010, but I was diagnosed with Stage IV Wilms tumor at 5 years old in 1998. I was so young and I underwent so much chemo/radiation at the time. The tumor was in my right kidney and was removed immediately. I had this done at TheChildren's Hospital in Boston. Dana Farber.

Anyways, I was considered "cured" at 12 years old after numerous follow-ups and scans to see if anything has came back. I gotta say, radiation at a young age REALLY messed with me. I feel as if I didn't reach "conscienceness" until 14. Before 14, I was a lazy mess. Wouldn't shower. Didn't know and wasn't aware of my surroundings. I was bullied A LOT because of my appearance and the fact that I reached puberty at 10 years old.

Anyways, When I was 14, I was still coming out of that strange daze. I can officially say I came OUT of the daze at 15 years old. Almost 16. I felt as if I had reached a higher level of conscienceness. I started taking care of myself more than anybody. I'd exercise since I was overweight, lost 70 lbs, definitely healthy and taking care of myself.

Now, I'm 19 and I turn 20 in January 2013. Last month, I changed Primary care doctors because my original Doctor wasn't thorough and didn't seem to care about anything I had to say.

Before I changed primary care doctors, I went to the Emergency Room in Late August of 2012. I had pain in my one left kidney. I was thinking it was a UTI. They thought it was Kidney stones. They did a CT scan, an Ultrasound & they said nothing came up. I was sent home. The pain was a 2/10.

Now back to right now. I have a new Doctor and I tell him about the CT scan in August. He looked at the CT scan results and said it looks like I have a benign tumor on my Adrenal Gland...on the top of my left kidney. My heart raced and I tried to stay calm....but it was difficult. I told my Fiancee about what the Doctor said and she balled her eyes out...but for some reason, I was expecting long term effects. I already HAVE long term effects and this is just more of them.

My current LONG TERM COMPLICATIONS ARE:

Paranoia
Anxiety
Depression
OCD(There's another term for it)
Confusion, Unreasonable thinking. Unrealistic at times. Mild Schizophrenic-like.
This...THING thats going on.


Now, after he told me about the benign tumor, he sent me for an MRI about a week later.
The MRI results came back today and he says that I need to see a cancer specialist because he isn't sure if the tumor on my adrenal gland is benign or malignant. There could be more going on in other parts of my body.

Secondary Benign or Malignant tumors are common in Long Term survivors of Wilms tumor...especially Stage IV. I have an appointment in Boston coming up within the next few weeks and I ask that you all pray for me.

Anyways, my advice is that you KEEP...and I mean KEEP KEEP KEEP Appointments for Wilms Tumor Follow ups. Mine stopped at 12 and look at me now. I'm almost 20 with these side effects. The anxiety and depression can be controlled with medication, but you'll WANT WANT WANT and NEED NEED NEED to keep the Follow Ups...even after 7 years. Request it. Beg for it if you have to. Just have a REAL good Doctor. Do Yearly CT/MRI Scans if you must.

I'm almost 20. A Survivor of Stage IV Wilms in my right kidney. I believe God will help me through my future battles.