Introductions, welcome


(Laurelee Bixenman Graham) #21

Hello. Our son Chase was Diagnosed at 5 months old with NB Stage IV. After 20 rounds of chemo, associated surgeries, long term health issues, etc., he is now…in college!!
May you all be equally blessed. We are here for you. All the best. :blush:



As we are so far out, it is nice to be able to offer some hope. I remember sitting in clinic, which we still do, and seeing smiling families w their healthy kiddo and praying for that day. It gave me hope. I hope my sons picture gives someone else the same hope.


Surviving and Going forward
(Jessica Guess) #24

My name is Jessica Guess and I am here to seek help for this journey that we are on. My son Carter G was diagnosed with stage IV high risk NB on Oct 23 2015 a week after his 4th birthday. He had been drinking a lot, peeing a lot, and sleeping a lot. I thought diabetes because it runs in my family. I was very wrong. He starated vomiting once a day after his birthday. Dr said probably viral. I insisted on lab work and they finally agreed on that monday. When we got to our appointment 2 days later for results and he had 200/180 BP. They must of checked it 10 times. They felt his tummy and said it was distended. They immediately called Peyton Manning Children’s hospital in Indianapolis and told us to make the 2 hr drive asap. I still had no idea. ER did UT and 1.5 hrs later, my husband said “someone talk to us” Dr came in and dropped the bomb on us of very large mass in his abdomen. When we got admitted an oncologist came to see us. I still didn’t have a clue until 2 days later when they confirmed our fears. He just finished round 6 of chemo. Next week we head to Cincinnati children’s hospital for 2 separate stem cell transplants. Then radiation and immunotherapy. I’m still at a loss, but we are all fighters! This is my reason for living!


(Kyle Matthews) #25

Welcome Jessica! Although I hate that nb has brought you here, I’m glad you found us.


(Sam Saffron) #26

So many of the elements of your story are exactly like ours, sleeping a lot, high blood pressure, “probably a virus”, ultrasound and so on. It is so tragic that NB is diagnosed so late, and the doctors don’t seem to have any way around it. In Japan they even tried scanning kids at 6 months and got no improvement by doing it.

You were diagnosed only 3 days after us!

Wishing you tons of good luck during your journey!


(Jessica Guess) #27

My heart just breaks for you all. When I start to feel overwhelmed, I look at my son and he makes me feel recharged. He is such a feisty and strong little boy! He keeps me on my toes and keeps me going. I keep getting reminded that this is a marathon and not a sprint. Wise advice!


(Jessica Guess) #28

I am so sorry for your loss and grateful for your compassion and dedication to something through all of this. Bless you and your wife for bringing this forum through to fruition!


(Kyle Matthews) #29

Thank you so much. It was perfect timing for @sam to partner with us.


(Sophie Grow) #30

Hi,
I’m Sophie. Mom of Gracie. My Grace’s NB was detected in utero for 37 week ultrasound. She was diagnosed with neuroblastoma stage 4s. Our oncologists and doctors said to leave her in my belly to grow strong. She was born on her due date. And had her first MRI at 2 days old. An MIBG scan at 2 weeks. And surgery to remove a mass that was essentially her adrenal gland. By that point at 4 weeks old her cancer had spread to her liver, bone marrow, and other adrenal gland. But she had no pain. She just struggled to gain weight. Breastfeeding was never enough for that hungry girl. Then I had surgery to remove my gallbladder at 10 weeks, which explained my struggles breastfeeding. She healed so much quicker than I did. She did not require chemo or radiation. Her cancer spread and then spontaneously regressed at 10 months. We had frequent monitoring and scans for 4 years. June 2015 was our exiting appointment and now she is still NED. She’s always been healthy and vital even with cancer. It seemed to me like a cruel trick that she could be snatched at any moment when I have this lovely child. We never knew for sure that it wouldn’t worsen or stay the same. I’ve learned so much. She’s 4 and a big sister now full of compassion and wisdom. She’s pedal-to-the-metal energy and always had been. I am touched by all of your stories. Bless all of you and your families.


(Dawn Burgess) #31

Oh my goodness, he is just the cutest!
And his smile looks a bit mischievous!


(Stephanie) #32

Hi, I’m mom to Baylee 3 who was diagnosed with stage 4 high risk non amplified Neuroblastoma on Jan 15, 2016 (this is also the four year anniversary of my sons death from a heart defect at the age of 6). She is in frontline COG treatment and just finished the 3rd round. She has done really well. Her primary tumor self resolved so no surgery but it is in her marrow and bones with two bone lesions. She also has Horners syndrome.

She presented with severe pain all over and constipation. Initial blood tests came back good so it was dismissed as a virus and constipation but this didn’t sit well with me so I kept pushing and finally got a good doctor.


(Kyle Matthews) #33

Glad you found us, @Bayleesmom. I am so sorry you’ve lost a son.

Welcome.


(Dawn Burgess) #34

I’m so glad you’re here, and she is totally adorbs!!!


#35

Hello everyone, I joined this club in 2010. That’s actually the year I met my husband. He was diagnosed with stage III neuroblastoma in 1984. I wasn’t around for the roughest parts in his life, but I’ve heard about them. Often times we feel like we should reach out to others as they face the same fight he did. I’ve seen many people ask what the future might hold and if things ever get back to “normal” on here and thought I might be able to provide some insight. I know every case is different, and certainly medical techniques have improved in the 30+ years since he battled the beast. But we’ve walked the walk and we’re here.


(Kyle Matthews) #36

Well that’s just beautiful! Thank you so much for sharing.


#37

Hi there. I’m here because both my daughters have been affected by Neuroblastoma. My eldest daughter Jessica was diagnosed with stage 4s at 3 months old but thankfully 3 months later was fine and 5,5 years down the line continues to do well. However, in September our youngest daughter Hayley was diagnosed with stage 4 high risk Neuroblastoma at 4 years old. Hayley has had induction chemo so far and is now having additional TVD to try to clear the bone marrow of disease before proceeding into high dose. This is taking longer than expected as her bone marrow always takes a long time to recover for some reason. Really glad this forum is here and look forward to chatting to you all.


(Kyle Matthews) #38

Wow - I am so sorry @HMum. It is so good to hear Jessica is doing well though! Hayley’s turn now.

Welcome.


(angela ferrick) #39

My name is Angela Ferrick and my beautiful Jake Thomas was diagnosed with stage 4 neuroblastoma high risk in June. Jake was 6 years old at the time. We are treated in Syracuse, NY. Jake had 5 cycles of chemo, recession of tumor, tandem stem cell transplants and just finished his last radiation today. We are starting immunotherapy at the end of April. Thank you for this forum. #TeamJake


(Jessica Guess) #40

I think this is very valid and appreciated because we have no clue what each new obstacle will bring. I am scared all the time and I am always positive but I have dreams about what quality of life that he would have. So many mixed emotions


(Beth Dembitz) #41

I’m Audrey’s mom, Beth. Audrey was diagnosed a week before she was born in 2011. We found the adrenal tumor on the same ultrasound that told us she’d be a 10 pounder. She was initially stage 2b, but that eventually changed to 4s. We had resection surgery at 6 days old and then waited 12 months for the residual tumor, skin nodules and lymph nodes to regress. She’s been NED since July 2012.


(Ashly Mitchell) #42

Hello,
My name is Ashly. My son is 2.5 years old and was diagnosed with stage 4 non-amplified neuroblastoma Dec.11 2015. We are currently in hospital completing round 5 of induction chemo with repeat scans for the first week of april and surgery tentatively booked the following week.

Our story starts just after his second birthday, he began skipping the odd meal, having constipation, and sleeping a bit more. Having brought him to our doctor no less than 3 times, she brushed off his symptoms as normal. A bit later he would develop pain just under his rib cage. Again we were turned away and told the pain was due to constipation. Upon returning from our first trip away from our son for our anniversary, our son developed a low fever and stopped eating. His lymph node in his neck swelled up. Again we went to our doc, who did bloodwork and found nothing but a slightly low rbc count. She told us it was a viral illness. After 7 days of fever and no eating i took him to the emergency room. There, doctors ignored the whole story and fixated only on the fever and not eating. They told us again it was viral and to go home. However, while in emerg we were exposed to norwalk virus. So 24 hrs later he got very sick and we were back in emergency. They finally admitted us, Dec.5th. After a few days we met a pediatrician who thought something wasnt right, and sent us for an ultrasound that would reveal an 11cm in diameter abdominal tumor inside the tiny belly of my little man. Of course, we all got Norwalk after that. We were transfered to childrens hospital. We began chemo 2 weeks later. Then, on Christmas eve, 2015, our son had to go to ICU for extreme fluid overload and a blood pressure of 180/110. After 2 weeks, double chest tubes, 2 blood pressure medication infusions, and a great nephrology team, we left icu. I tell you, if not for the nephrologists i fear our son would not have made it through that difficult time. We did round 2 chemo without incident. Round 3 (etoposide and cisplatin) was an absolute nightmare, puking every 15 minutes day and night for 72 hours and puking for 2 weeks in total. Not enough antiemetic options for young ones here in Canada. We got through it, did round 4, and now on round 5…again the dreaded combo we saw in round 3. Too soon to tell how bad it will be. We are anxious to see the scans next month to learn what kind of progress we have made, and nervous about surgery and everything that comes after. So glad to have this group as a resource moving forward!

An interesting side note: our son prior to diagnosis was experiencing sensory processing issues and was non verbal. We were on a wait list to see a pediatrician to have him evaluated for possible autism spectrum disorder when we learned of his cancer. After round 3 chemo, he began to speak! That round really cut the tumor down, as evidenced by his need for blood pressure medications cut in half, his bp elevated due to noradrenaline being released by the tumor. As well, some of the sensory issues are showing improvement. His sweet little voice is certainly helping us smile through these rough times.