5-month-old diagnosed with Stage 3 NB


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08-24-09 07:45 PM
5-month-old diagnosed with Stage 3 NB

Hi, all, I am new here and just wanted to introduce myself as I read through all the posts and try to absorb everything.

My third son, Max, was born March 23.  Within three days, he was diagnosed with a VSD (ventricular septal defect) -- basically a hole in his heart.  Because of this, he has been followed very closely by both his pediatrician and his pediatric cardiologist.  When we went in for his 4-month well baby visit, his pediatrician noticed what she assumed was an enlarged liver (very common with VSDs).  She put in a call to his cardiologist, who was very concerned, as he'd just seen Max a few weeks prior and hadn't felt anything abnormal when he palpitated Max's abdomen.  He ordered an ultrasound and chest xray.  A few hours after the tests, when we were relaxing at home with family, the pediatrician came to our house and told us the ultrasound had shown a mass near Max's right kidney and we needed to go to Phoenix Children's Hospital right away to be admitted.

A few days later, after many tests and a biopsy, we got our diagnosis of NB.  Unfortunately, the tumor is twined around his aorta and vena cava, so surgical resection was not an option, and we had to start chemo.  So far we've done one round and are scheduled to do a second on September 1st.  We are enrolled in ANBL00B1 and ANBL0531 (Group 2), so we will only have the two rounds of chemo before they repeat all the scans to see if the tumor has responded.  If not, back we go for 2 to 6 more cycles.

Anyway, I just wanted to say hi and that you and your little ones are all in my prayers.

God bless,




08-27-09 12:22 AM
Re: 5-month-old diagnosed with Stage 3 NB

Hi Marcy, I am sorry to hear about your baby, I am also new to the site, still learning and reading as much as I can. We still don't know what the treatment will be for our baby, hopefully we will have an answer this friday, but wanted to ask you how was your experience with the first chemo round since your baby is about the same age as mine. You can read Aaron's story at www.caringbridge.org/visit/aaronissacperalta. If you don't have a website for you baby, I recommend creating one, it is very simple and it helps you keep family informed in an easy way, without having to repeat the same story to everybody.  =)

I'll be praying for you baby.



08-29-09 10:03 PM
Re: 5-month-old diagnosed with Stage 3 NB

Hi Marcy,

 My son Logan was also diagnosed with stage 3 at 5months... it's the best timing you could ask for when it comes to Neuroblastoma. I pray that Max responds to the chemo as well as Logan did - we had very favorable histology and genetics which helped our odds.  After 2 cycles of chemo, he's deamed "cancer free".  The 2nd cycle of chemo was much harder than the first... but recovery seemed faster.

When we first heard about Logan's illness, we were in a state of shock... we met an amazing friend who had gone through 18months of battling Wilms Tumor with her daughter... the first things she said to us was "Welcome to the Cancer Family" and "It's ok... to be scared, to be focused, to be pushy, to be..."  Good Luck and god speed for Max in beating this cancer!

09-25-09 09:29 PM
Re: 5-month-old diagnosed with Stage 3 NB

My Beatrice was 6 months old when she was diagnosed with stage 4 intermediate risk neuroblastoma (last february).  She needed to get 8 cycles of chemo.  8 cycles were needed because her tumours were diploid.  We're going in for cycle 8 on Wednesday.  Thank God, she's been really strong throughout.  We didn't need to feed her through an NG tube, she stayed at the 50th percentile throughout treatment, and (knock on wood) she hasn't had to be admitted for infections between treatments.  I think what saved us with the feeding is that I was still breastfeeding her.  Even though she would lose her appetite with her chemo, she still nursed throughout.  That's one piece of advice that I would give: if you already breastfeeding, keep it up.  The doctors told me that it didn't make a difference in her ability to fight infection since chemo is so hard on the immune system, breastfeeing is just a drop in the bucket, but Beatrice did well, so who knows, maybe it helped.

Her tumours responded well to chemo, and with the surgery, we've been able to reduce her tumours by 90%.  Her surgery was risky with the primary tumour encasing her celiac and superior mesenteric arteries.  But it went well.  However, there is still some microscopic activity in the tumours they removed...  The doctors don't seem too worried about it though since she is not high risk.  We'll hopefully just have to keep an eye on it.

My prayers are also with you,