How We Found Out

How We Found Out Our Daughter had Neuroblastoma

Our Angelina was born on August 12, 2009. Five weeks early, she couldn’t wait to join her big brother, Aidan (now 5) and snuggle with her daddy. She was quickly diagnosed with Congenital Adrenal Hyperplasia (CAH) but after talking to a specialist we were told her’s was not a serious form and forgot about it.

Angelina had lead a completely normally life until the middle of March 2013 (just over 3 1/2 years old). She began to have a high fever, and was complaining that her back and legs hurt.

At the same time, her father contracted strep-throat so we wrote off the fever as viral and the leg and back pain as growing pains (as she’s coming up on a 4th Birthday in August).

We consulted with our Doctor, who gave us his blessing to go on our dream vacation -an 8 day Cruise on the Carnival Splendor. On the first days of our vacation, Angelina seemed happy, although she was still complaining of pain while walking.

However, after a day or two, she complained of terrible stomach pains that would strike after she ate, and while she was sleeping. Believing our little one to maybe be lactose intolerant (she was drinking a lot of chocolate milk, and her dad is lactose intolerant) we proceeded to eliminate dairy from her diet. However, this had no success. We then eliminated gluten, as we thought maybe it was gluten intolerance. However, the pain and the fever (which had been persistent for weeks) weren’t improving. She would lie in bed; we would give her Tylenol for the fever and she’s perk up. She’d want to go swimming, go to the beach, play with play dough at Camp Carnival.

But she was never 100% our Angelina. After arriving back in NY, and speak with the ship’s nurse, she thought that maybe Angelina was just constipated and said that Tylenol would help the fever and that constipation could cause the fever.

We brought her home, and she pooped! We were thrilled…but then the next day she continued to complain about the pain, and didn’t want to return to school, even though she said she missed her friends.

We took her to see our family doctor, who began a full blood work-up due to her “Fever of Unknown Origin”. At the time, we thought it was silly – the fever was probably just a virus, and we kept saying that we’re going to put her through all these tests, for it to just magically disappear.

After the initial tests came back, and after informing our Doctor of her at birth diagnosis of CAH, we consulted an Endocrine specialist to see if the fever might be related to this. She assured us that prolonged fevers in children with CAH is common, as they can sometimes have a hard time producing the hormones that help fight viruses.

However, when we returned to see our general doctor, he was re-examining Angelina (“I don’t know – Let’s just start from the top again, shall we?”) and during his exam of her abdomen found “something hard”. While it was possibly hard stool (as she was still not well in that area) he sent us for an abdominal ultrasound the next day and wanted to do an under sedation MRI and CT scan two days later. He said he would be surprised if it were a “malignancy” based on her prior test results.

The morning of the ultrasound Angelina was happy! She was having a great day, no pain and she wanted to go to school, despite her slight fever. We almost skipped the ultrasound – she was cured. It was just a fever, and now it had gone. But our school insisted that we go just to be on the safe side.

During the ultrasound the tech stopped and kept looking over the spot where the doctor had felt the “hard spot”. She told us that she wanted to make sure that the doctor could see the image. We knew that this was not a good sign – ultrasounds are now digital and she had spent almost a solid 5 minutes just on that one spot. Even I, who has no ultrasound experience, cause see that there was a lump that didn’t look like anything else on the screen. She returned telling us that the radiologist wanted Angelina to immediately have an abdominal x-ray.

Our Doctor called us and told us that there was something in her x-ray, and that while it could be impacted stool, it was still a little high in her system to be. He said we would know more after the tests the next day.

The next morning, we took Angelina to the hospital for her brain MRI and her abdominal CT scan. The MRI went quickly, and we were assured that her abdominal CT would “take about 6 minutes”. But it didn’t – it too much longer than that.

We left the hospital, and brought Angelina home. Around noon I received a call from a nurse at our Doctor’s office asking us to hold for the doctor (never a good sign). When Dr. Grunewald came on the phone, he told us that the spot he had felt, and the spot that we had seen on the CT scan, the X-ray and the ultrasound was a malignancy.

We were devastated. He told us to go back to the hospital to meet with Dr. Rifkin, a pediatric oncologist to talk about additional testing. We took Angelina to the Valerie Fund, a center for children with cancer, which was ironically founded by Sandy’s Step-Uncle whose daughter, Valerie had tragically passed away from leukemia in the 1970’s.

There we met with Dr. Rifkin, who talked to us more in-depth about Angelina’s results.

In the CT scan, they were able to see three major spots. A tumor on her Adrenal gland (the same gland associated with CAH), a spot on her spine, and another spot at the top of the CT scan on the border of her chest that was not as easily seen because that area is technically part of a chest CT scan. She asked us to bring Angelina back the following day for a Full Body MRI.

Her full body MRI was only supposed to take an hour – however, it took two. We were told that they needed additional time to do more imaging of her spine.

We waiting for her results at the Valerie Fund Center with my parents (Mary and Charlie Phillips) and Angelina was curled up on her dad’s lap.

What the doctor told us was never what we thought we would hear in our wildest dreams.

Dr. Rifkin believed that Angelina had stage 4 NEUROBLASTOMA. She explained that it neuroblastoma starts out as additional nerve cells that you’re born with that are in your body at the time of birth. Over time, these cells wind up in different places, and can turn into cancer. She also explained that Angelina was stage 4, which meant that the cancer was in multiple areas and had metastasized to her bones.

Only 500 children a year are diagnosed with this type of cancer. We would need a bone marrow test to confirm the diagnosis but based on the tests that had been run the week before, and the additional labs drawn that morning the bone marrow screen was more to confirm what they already knew.

We were stunned – we were told that despite her advance stage, Dr. Rifkin was hopeful that Angelina could be treated and beat cancer – she was given a 50/50 chance. We were also told that the five year survival rate for children with neuroblastoma is 35%.

So we set out on a mission – Our daughter has a 50% chance of beating cancer. We’ve know Angelina since the day she was born, and even before then she was a fighter. And then – once Angelina beats this, she’s going to beat the odds again and live to a ripe old age.

We’ve already installed her central line – and we’re waiting on one or two more tests before we start a very aggressive treatment plan. This plan will take approximately 6 months to a year depending on how she responds to the treatment.

Please stay with us through the journey – Angelina needs all the love, support and prayers she can get in order to beat this thing.

Cancer – we’re coming for ya….

43 comments to How We Found Out

  • The Oppegaard's  says:

    Sending prayers!!!!

  • Aunt Carla  says:

    Danielle, my heart is breaking for all of you. I cannot imagine the pain that you are going through. I wish there was something that I could do to ease that pain. Please know that I am praying for her and the entire family. I love you.

  • Leah Hammerman  says:

    Thanking about your family and wishing Angelina a Refuah Shleimah–a speedy and full recovery.

    Love,
    Leah

  • Holly Ernst  says:

    I am so sorry to hear that your family is going through this right now. Although I don’t know Angelina I know Danielle and imagine that Angelina is a fighter just like her mom. My thoughts and prayers are with you all right now.
    Love,
    Holly

  • Esther Tonnessen  says:

    My thoughts are with you and your family. I am so sorry for all your family is going through.

  • Mara Suskauer  says:

    Sending lots of prayers and much strength to you all. As part of Angelina’s Army, we are here to help however we can!

  • Laura Sivilic  says:

    Thinking of you guys and sending prayers and happy thoughts. We’ll help you in any way we can. We love you!

  • Bernadette  says:

    Kids are stranger than we think. She will be beat this!

  • Jen Bradley  says:

    holding mighty little angelina and her entire family in the light.

    • Danielle  says:

      Jen –
      I’ve been meaning to call you to thank you for the iPad mini. Angelina LOVES it. The games are great, she loves watching movies on it and I spoke with her preschool and since she won’t be well enough to attend school in the fall, they’re going to let us attend school via skype. Thank you so much – god bless you.

  • Sheri Weinstein  says:

    Scarlett is in Aiden’s class, and we are here, as part of Angelina’s Army, too (good job, Mara!) to help your family maintain their strength in any way they can. If marrow tests are needed, please let us know. In the meantime, I hope to host many playdates after school with Aiden whenever we can (I see his dance card filling up) and make him feel as secure and loved as possible, and to check the schedule regularly for other help. The more that we can take the small things off of your mind, the better. So thankful for how the internet can help us build community like this.
    Sheri Weinstein and Adam Friedland

  • Chasity Glazer  says:

    My mother beats the odds (30% chance of surviving past 3 months – that was 20 years ago). She WILL beat this! If you need ANYTHING, please let me know. I really means it.

    XOXO,
    Chasity Glazer

  • Bridget, Dave, and Kai  says:

    I am so sorry, Danielle,that Angelina and all of you are going through this. Kai, dave and I are sending you our love and prayers.

  • Maribel  says:

    She will beat this! Do not lose your faith!! My entire family will pray for Angelina.

  • Jill Mendelberg  says:

    My heart is breaking for you all. I am sending hugs and prayers your way. I know that Lila will be able to play with her friend Angelina very very soon!!

    xx
    The Mendelbergs

  • Melissa Randazzo  says:

    You are all in our prayers! Angelina is a strong little girl and she will get through this! Please let me know if you need anything! Hugs and kisses to you. Melissa, Gianna and Johnny

  • Gina Maas  says:

    You are all in my heart and prayers!!!
    xox

  • Ali  says:

    Angelina is a strong, amazing girl and we will pray every second of every day for her! Can’t stop thinking about you Danielle! Stay strong as you always are:)

  • Anita  says:

    Hi. We dont know each other. However, angelina and u r in my prayers.

    Sending u a big hug,

    Anita
    (Inactive Parent Connection member)

  • Meghna  says:

    Hopes and prayers and best wishes. She is a brave and strong little girl. Love to her.

  • Natasha Kreizman  says:

    So overwhelming. We are only thinking positive thoughts. Oliver is sending Angelina a BIG hug. Please let us know if you need anything at all. xoxo- Natasha

  • Michele  says:

    Hi Danielle,
    We’ve never met but I received an email from the Parent Connection about Angelina. What a nightmare. Know that you’ve got an army rallying around you and your family and we’re going to help out any way we can!! Is there a place where we can send things? Cards, balloons, meals?
    Big hug, Michele

  • Michele  says:

    Just saw the lotsa hands link…

  • Dina Conover  says:

    Oh my gosh. Thinking about your tough little girl.

  • Marilyn  says:

    My prayers to your entire family and especially for Angelina, God will embrace her in his arms and will not let her down.. KEEP THE FAITH!

  • Tara Mazza  says:

    Hi Danielle

    Love and prayers to your family! We have never met, but there was an update on facebook from bergan mama about the situation. Please keep us posted when the link for donations is running, and like the previous post, if there is anything else we could do in the interim, please reach out!!

  • Zuzanna  says:

    Danielle, I have Angelina in my thoughts and prayers. You are such a strong woman, and I can only imagine what a strong little girl your Angelina is. I pray that she beats these odds. I’ll help out however I can. Be strong!

  • Gina Lyn  says:

    I had no idea this was going on- you’re in my thoughts and prayers always! Please let me know if there’s anything I can do from South Jersey!!

  • Joan and Harvey Bucholtz  says:

    You are in our thoughts and prayers. Your spirit and determination will help get you through this tough time as will the love and support that you have from many, many people. One day at a time….

  • Melanie Conklin  says:

    Hello–we’ve met in passing in the halls at Beth-El. While I have not had a child with neuroblastoma, I did a significant amount of research on the cancer for a project last year. If you ever need someone to talk to who isn’t an expert, but can understand what you are dealing with, please get in touch. I’ve signed up for your help group. And I am praying that Angelina gets a shot at the best treatments for NB–living in this proximity to NY and Sloan Kettering is one small spot of luck in this terrible situation. I will be thinking of you. Melanie COnklin–melanie.conklin at mac.com

  • Micah  says:

    We are here and ready if there is ever anything we can do.
    She will fight, and she will win. I had a student who graduated last year who has survived and thrived for 15+ years after his treatment, and the treatments are even better now!
    Angelina is in all our prayers, our thoughts, and our hearts – as is your whole family.
    Love,
    Micah

  • Allison Barnett Dukes  says:

    Hi there,
    Danielle – I know you don’t know me, and Sandy – I’m sure you don’t remember me…but I’m your second cousin, Allison (my parents are Susan and Syd Barnett.) I just heard about your beautiful little girl and I am so sorry you are all going through this. From everything I’ve read here, she sounds like one tough little girl, who will fight and BEAT this awful disease. Please know that my family here in Bucks County, PA is thinking about all of you and, and praying for you. My husband has beaten those “percentages” given by doctors (twice) and I know Angelina will do the same!
    Lots of love to all of you~
    Allison

  • Barbara  says:

    Danielle, I am so sorry you are all going through this. Angelina has been in my prayers and thoughts and Emmie sends Anglelina a big princess hug. She is looking forward to having a playdate as soon as Angelina is up for it. You will all be in our thoughts. Please do not hesitate to get in touch if you need anything.

  • Noelle Houghton  says:

    Danielle (and family), my thoughts and prayers are with you. I can’t even begin to imagine what you are going through–I’m getting teary eyed just reading all of this. If there is anything I can do, you know how to reach me.

  • Nicole  says:

    You are in my thoughts and prayers.

  • heather Harrington  says:

    You are all in our thoughts. all our love Heather Harrington and her dancing pal Lorelei Harrington Wright

  • Cathy Motamed  says:

    So sorry to hear about your terrible news and this difficult struggle. We have Angelina and you in our hearts and prayers, Cathy, Marc and Talia

  • Haydee Baculy  says:

    Sandy n Danielle my prayers are with you all , I will say to you both as a mother of four children have the strongest will power to over come anything and I know Angelina will over come this,with Gods Angels right by her side.

  • Jaime Costanza  says:

    Your Princess is a fighter.. She will beat this!!!
    My thoughts and prayers are with you always <3

  • Haydee  says:

    Danielle as you may know i have a 6 yr old grandson whom lives at my home and you guys live right around the block from me I like to make arrangements to set up some play dates with Aiden and my Grandson Jason on my days off, I heard Aiden Is a great swimmer so they can enjoy the day at our pool, I like to offer my help in any other way also. I will contact you,

    My love and prayers to Angelina and the family.

  • Deborah and Jerry  says:

    We are praying for your little angel! If anyone can beat cancer, she can! Love and hugs, Deb & Jerry

  • Ronni Schwartz and family  says:

    We are a fellow Beth El family and have heard a lot about Angelina and your family through the synagogue and Dancer’s Pointe. We’re thinking about you, holding you in our prayers and happy to help out with dinner.

  • Katie Telschow  says:

    Danielle – If anyone can beat this, Danielle, it’s your daughter. You are all in my thoughts and prayers and I look forward to hearing about how well Angelina is doing.
    Angelina’s Army is a great support for you and your family and if I can ever do anything for you, let me know.
    It’s been a long time, Roomie, but I’ll be there when you need me,
    Katie

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