Your Daughter has Cancer: 4 Words You Never Expect to Hear-Plus: Advice from a Pediatrician and Pediatric Oncologist

 

Emily in the Oncology playroom the day she's admitted to CHOC.

Emily in the Oncology playroom the day she's admitted to CHOC.

If you read my piece on my son getting Swine Flu, you know that it takes a lot to freak me out. Well, I guess fate decided to test me, because the day that story posted, I was told that my nine-month-old daughter, Emily, had a mass in her abdomen, which could very likely be a cancerous tumor. It was time for me to freak. –Alex

It all Began. . .
I took Emily to her nine month appointment on a Thursday and put her on the scale like I always do. She had only gained three ounces since her six month appointment. I knew she was small, but didn’t think much about it, and never realized that she wasn’t gaining any weight at all. Her pediatrician, Dr. Conti, was very concerned. He proceeded to examine her, and spent extra time palpating her stomach. Again, I didn’t think much about it. Dr. Conti went and got Dr. Carruth, who normally sees Emily, telling me he wanted Dr. Carruth to feel her stomach as well. Dr. Carruth orders a blood test to be done, and I’m thinking something must be wrong with her intestines, which is causing her to not gain weight. Dr. Carruth says the blood test will confirm if there’s a virus, or any foreign matters in her. In the meantime, I’m to feed Emily a high fat diet. I leave, and a nagging feeling stays with me that something is seriously wrong.

Friday, I get a message from Dr. Carruth saying her white blood cell count is normal, but he didn’t get results on everything he ordered, and that they’d be in touch on Monday. That phone call came as I was shopping at Sear’s Essentials—my preschooler was running around shouting for toys as Emily was crying because it was way past lunch. Dr. Conti told me that they had felt a mass in Emily’s abdomen, and the blood test confirmed it. I was to go in that afternoon and have an ultrasound done. I was in shock—I was not expecting this.

I take Emily to get the ultrasound done, and the technician has to tell me repeatedly that she can’t share what she sees. Repeatedly, because I, of course, ask over and over again. We finish, and I’m to wait for the radiologist. He comes and gets me, a nice man, who I don’t know the name of, and who I probably will never see again. A man who told me that my daughter has what’s most likely a tumor and it’s probably cancerous. The tears finally come.

That evening, my husband, Bowen, and I need to go back into the pediatrician’s office to learn what this all means. Dr. Conti says it’s too early to tell if it’s cancer, and gives us the advice “to live in the moment;” something that I had to keep reminding myself as the next couple of weeks passed. What he says during the rest of our time there is a blur, as I keep repeating to myself, “Emily may have cancer.”

We’re Admitted to the Hospital. . .
The next day, Bowen, Emily and I are admitted to Children’s Hospital of Orange County (CHOC) in Santa Ana, California. I break into tears at every turn. This was not what I thought I’d be doing

Music Therapy sessions are offered at CHOC.

Music Therapy sessions are offered at CHOC.

on Tuesday, September 1, 2009. We’re taken to the third floor, Oncology. Luckily, we were warned by Dr. Conti and the Nurse Coordinator that this is where we’d be going—Oncology is who deals with “masses in the body,” even if they aren’t cancerous. I say it’s lucky that we were warned, because it semi-prepared us for what we saw. It was the cancer floor. 90% of the kids didn’t have any hair. Most were skinny and moving with difficulty as a result of going through chemotherapy or radiation treatments. It was heartbreaking, and I quickly learned that there was no feeling sorry for yourself—everyone there was in the same boat as us.

One of the many scans Emily did.

One of the many scans Emily did.

That afternoon Emily had a CT scan—it was more detailed than the ultrasound was—it could tell the Oncology team exactly what kind of tumor she had. We nervously awaited the results, and got them Wednesday morning. And that’s when I heard the words: “Your daughter has cancer.” Writing them now brings the tears. It’s something you’ve never imagined that you would have to go through.

The Nurse Practitioner went on to explain that the cancer was called neuroblastoma—it’s one of the most common pediatric cancers. “Common” they say, but yet Emily was one of the “lucky” 650 patients that are diagnosed each year. It was mind numbing. Neuroblastoma forms as a tumor, but then it can leak into the bones, spread to other parts of the body, and get into the bone marrow. It’s a tricky, mean cancer.

So, after digesting this new information, we are told that Emily’s next test will be a bone scan—this will tell us if the cancer has spread into the bones via lesions. After waiting an eternity, and she being NPO’d (doctor talk for no drinking or eating) for hours—which means we had a very cranky baby on our hands—we’re finally taken down for the scan. While we were away from our room getting it done, the surgical team came up to the room to introduce themselves. As you can guess, surgeons don’t wait around for you, so there went that opportunity.

Emily being "transported" to the next test.

Emily being "transported" to the next test.

We came up from the scan at about 5:00 PM and were told that, if we wanted, Emily could go into surgery that next morning at 7:30 AM. Bowen and I immediately panicked. Our thought was to be admitted into CHOC, find out what the mass was, and then go to the best place that handled whatever “that” was. We didn’t know what to do—we hadn’t met the team, let alone had the time to research them, or the surgeon who was assigned to her case.

After much discussion, Bowen and I decide to go for it. From what the doctors said, the tumor looked as if it wasn’t intertwined with anything else; it was just resting there, above her kidney, under her spleen. Pretty much cut and dry as far as tumor removal surgeries went. Surgery would be done the Thursday before Labor Day weekend—if we put it off, we’d be waiting around for four days, with no progress and no more answers on Emily’s condition.

Surgery. . .
That next morning, Thursday, September 3, I was once again crying with every move. The surgery was huge as it would tell us what exactly we were dealing with. We were taken down to the surgical waiting room and met Dr. Lam, Emily’s surgeon. Dr. Lam walked into the room wearing bright red wooden clogs and I immediately took a liking to him. He answered all of our questions thoughtfully, and with patience, and when he discovered that neither Bowen nor I had seen the CT scan, he took us back individually to show us what were dealing with. The tumor was huge. It dwarfed her kidney and took up her abdomen. It blew our minds. When it was time to take Emily to surgery, instead of her going on “transport” Dr. Lam declared, “I’m going to carry her in” and he proceeded to pick her up, grab her blankie, and off he went. I will never forget the image of Emily looking at us over Dr. Lam’s shoulder as he went through the wide double doors and down the long, long hall to surgery.

Emily's "Porterhouse". Yes, the ruler reads that it's 5" wide.

Emily's "Porterhouse". Yes, the ruler reads that it's 5" wide.

Two hours later Dr. Lam came back, with pictures in his hand, and joyfully declared, “It was fully encapsulated, we got it all!” He gave each of us huge hugs and there were tears all around. What wonderful news. He gave us the pictures he took and Emily’s tumor looked like a Porterhouse steak. Amazing.

The Next Week. . .
The next few days consisted of Emily recovering, finishing tests to see if the cancer had spread, and waiting for results. We learned that the bone scan was negative. Next up was the MIBG scan which is specific for neuroblastoma. This was done twice (there was confusion in her neck, which was bent when the scan was being done) and it was declared that she didn’t have any other tumors in her body. After that was the bone marrow aspiration and a bone biopsy. Those came back negative. We were on a roll until we found out that one of the four lymph

Recovering after surgery.

Recovering in the days after surgery.

nodes that had been removed was cancerous. (They removed her adrenal gland and four lymph nodes all together.) This meant that her cancer was declared a Stage 2B. But what we were nervously pacing for was the pathology of the tumor—we needed to know if it carried what is called an N-MYC gene. Basically, this is an amplification gene, and if the tumor had it, and one cell was left behind by the surgeon, then the tumor would grow right back. Seven days after the surgery, we finally had our answer—no N-MYC gene. Once again the tears flowed, but this time they were tears of pure happiness. It meant our baby did not need chemotherapy or radiation—she could come home.

But Then. . .
Friday, September 11 was a beautiful day. I woke up knowing I’d be sleeping in my own bed that night. Bowen and I playfully discussed all that we would do that weekend now that we would be back together as a family. But then, Emily spiked a fever, something that is taken VERY seriously on the Oncology floor. The patients have what is called a Broviac, or a port, in their chest which is how their medication is administered to them. These get infected very easily, and since most patients on the floor are going through treatment, their immune system is weak. An infection could kill them.

Cheerios, hospital style.

Cheerios, hospital style.

Blood was drawn and sent to lab for a bacterial culture. Her Broviac was removed since she wouldn’t need it. Her fever immediately went down, and the nurses thought it to be a fluke. Armed with antibiotics, our armbands were cut off, and we were discharged. As we were literally stepping into the elevator, the nurse came running down the hall, “WAIT! YOU CAN’T LEAVE!” Emily’s blood culture had grown a bacteria—she needed to stay and be watched. We couldn’t believe it.

The night was horrendous. NICU was called down to insert an IV. An hour, at least 10 pricks, and blood all over my pants later, it was finally in. Emily was exhausted; I was on my last nerve. We just needed sleep. As I was crying out of frustration one of the nurses reminded me, “This is a huge inconvenience, but you need to remember your daughter doesn’t have cancer.” She was right. I straightened up my spine and decided, as Dr. Conti had told me, “to live in the moment.”

And, We’re Home. . .
On Tuesday, September 15, it looked like we were finally going home. But first, we needed to meet some celebrities.

Radio Station KIIS FM (the home of Ryan Seacrest) built a real radio station, named Radio Lollipop, in the lobby of CHOC three years ago. CHOC broadcasts from the station to the hospital rooms—the kids can call in, request songs, tell jokes, and if they can leave their room, come down to the booth where there are activities to do. KIIS FM was there on September 15 to celebrate the third year anniversary—they broadcasted from the station all day, and celebrities such as Shakira, Kellie Pickler and David Beckham came to help celebrate.

Emily with David Beckham.

Emily with David Beckham.

Emily and I went downstairs to check out the festivities. Emily was quite the celebrity up on the Oncology floor—not only because she beat the odds and was going home without needing chemo, but because she has an infectious smile and waved to everyone who came her way. As a result, I received some “insider information” and was told that a Radio Lollipop volunteer was bringing David Beckham by Emily’s room to meet her. I don’t think I could’ve moved faster. We were waiting for Beckham, and as promised, he came by the room. Beckham was extremely nice—he picked Emily up and whispered sweet nothings to her as he asked me what her condition was. It was a cool ending to a really long story.

With David Henrie from Wizards of Waverly Place.

With David Henrie from Wizards of Waverly Place.

In Epilogue. . .
Emily will need monthly check-ups from the Oncology team, and a scan every three months, for the next year. After that, the appointments are less frequent, but she will be going to the CHOC clinic until she leaves for college. Emily will grow up knowing CHOC like the back of her hand—the Oncology team in turn, will see her grow up into a young woman. It’s a crazy way to start your life, but we are thankful that Dr. Conti caught it. Now that we’ve been home for a few weeks, Emily has settled in to her routine, and if it wasn’t for the scar across her belly, it would be as if the whole experience never happened.

Side note: This past December, 2009, residual cancer was found in Emily. To read what happened next, click here.

Emily sees her big brother for the first time in 15 days.

Emily sees her big brother for the first time in 15 days.

Advice from Emily’s Pediatrician, Dr. Jon Conti:

I can’t imagine what a difficult time this must have been for Emily and her family. As a parent, the fact that your child has cancer is one of the worst situations you can be faced with. While reading this amazing story, two questions immediately come to mind: 1) How does a baby get this nasty tumor? and 2) What could I have done to prevent it?

As with some childhood cancers, the cause of neuroblastoma is still under investigation and not completely understood. Hence no known prevention methods exist. However, to paraphrase Louis Pasteur, chance favors the prepared.

It was critical in Emily’s case that her mom brought her in for the recommended “9 Month Old Check-Up” and then quickly followed through with the diagnostic studies as advised. Their experience demonstrates how important these “Well Child Visits” can be. It should also not be overlooked how fortunate we are to live near a medical center like the Childrens Hospital of Orange County, where they have the resources to treat conditions such as Emily’s.

I am so thrilled that little Emily is doing well now and look forward to seeing her at her 12-month check-up!

Dr ContiAbout Jon Robert Conti, MD FAAP: Dr. Conti earned both a BA in Psychology and a BS in Biological Sciences from the University of California, Irvine. He went to medical school in Michigan, and completed his pediatric residency from the Children’s Hospital of Los Angeles in 2001—consistently ranked by US News-‘Nation’s Best Hospitals’ since the 1990’s. Dr. Conti is Board Certified in Pediatrics & Adolescent Medicine and presently cares for patients & their families at Sea View Pediatrics in Laguna Hills & San Clemente. He can be reached for consultation at Sea View Pediatrics: (949) 951-KIDS (5437)

Advice from a Pediatric Oncologist, Dr. Jason Litten:

I am a pediatric oncologist and a friend of the Ota’s. When I heard that Emily was diagnosed with neuroblastoma I was shocked and saddened. Although I have cared for many children with cancer, I have never experienced a cancer diagnosis in a friend’s child. While Emily was quite unlucky to have a malignant tumor, she is now very fortunate to enjoy an excellent long term prognosis.

Emily is now home and thriving with a fading surgical scar on her belly as her only reminder of cancer. Many other children, however, will not be so lucky. Most children diagnosed with cancer require some combination of surgery, chemotherapy and/or radiation. With modern medical treatment, some pediatric cancers offer greater than 90% cure rates. While these rates are now quite high, many children suffer the long term consequences of cancer treatment. These consequences can include obesity, heart disease and hormonal imbalances.

Although there are no specific warning signs that your child has cancer, there are several things that you can do to minimize your child’s risk of cancer. Important measures include using sunscreen while outdoors, providing a healthy diet and attending all recommended check-ups with your child’s doctor. With the love of the Ota family and the watchful care of Dr Conti, I am confident that Emily will continue to be cancer-free and I look forward to dancing at her wedding.

JBLmdAbout Jason B. Litten, MD:Jason B. Litten, MD attended Cornell University for his undergraduate education and Emory University for his medical degree. He trained in general pediatrics at the University of Miami and pediatric oncology at UTSouthwestern in Dallas, Texas. Dr Litten currently works in oncology drug development at Amgen Incorporated, Thousand Oaks, California. His research interests include heritable cancer syndromes, cancer genetics and oncology drug discovery. Dr. Litten can be reached by email at jlitten@amgen.com or by phone:(805) 447 – 4543

breezy_deal1Breezy Tip: Looking for more resources? Read on to see what helped our family, as well as two others who have been affected by pediatric cancers.

Breezy Mama Laura P., who lost her son to neuroblastoma, had these resources to recommend. In her words:

  • www.caringbridge.org. I highly, highly, highly recommend it and it’s nice to hear from people. Fantastic resource. Would absolutely do this again and highly encourage others to use something like it.
  • I was on a neuroblastoma mailing list through www.acor.org which I think is an excellent resource. They have lists not just for neuroblastoma but other cancers as well. Basically, you get a group of people dealing with same cancer and you can ask anything, see other families going through similar things and get any kind of support- medical and emotional.
  • A great book for explaining death to little ones [i.e. siblings] is Lifetimes by Bryan Mellonie.
  • Lastly, we used mostly family and friends for emotional support and  journals, abstracts, etc. found online for researching medical issues.

A mom who lost her son to a brain tumor writes:

  • I’ve read a lot of books, and for me, the one that I connected with is called A Grace Disguised by Jerry Sittser.  Jerry Sittser suffered great loss, losing multiple family members in a single car accident.  I was drawn to his philosophy of life, as he beautifully describes how the soul grows through loss.
  • Pediatric Brain Tumor Foundation; this book was given to me from the CHLA (Children’s Hospital of Los Angeles) staff after the removal of my son’s brain tumor.

The websites that I refer to are:

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Comments

  1. Did you ever hear about the Gerson Clinic? If not, check it out!

  2. Karla, I am so sorry to hear about your niece–it’s amazing how far oncology treatments and research has come. And, I’m glad to hear that although you had a mastectomy, that you’re still here to tell us about it.

    Monika, the Gerson Clinic sounds interesting. It’s in-line with what Prue Jeffries wrote about in her holistic healing piece:
    https://breezymama.com/2009/09/25/holistic-healing-pro-surfer-prue-jeffries-spells-it-out/

  3. Your story touched me! On my daughter Emmy’s 2nd birthday she was wheeled into surgery to have tubes placed in her ears and as scary as that was for me the only thing I could think of was, how can parents with really sick children can go through this? I’m so glad to hear of your happy ending, congratulations!

  4. Debby, It’s amazing how strong one can me when it comes to their children–you just get through it because you don’t have a choice. And, no matter if it’s tubes in the ear or cancer, it’s always scary and hard to see our children not feeling well.

  5. Awesome. She is so strong. Thanks for sharing.
    Blessings to you all.

  6. Alex, thank you for sharing– we are all so glad that darling Emily is ok! You and your family’s courage is awesome. Thanks for showing us your heart, and your tears.. love and hugs!

  7. Alex.. I had no idea Emily had a tumor. I have just read your story and the tears started pouring. So sorry you had to go through all of that. I am so glad it’s a happy ending. Thank you for having the courage to tell your story. Hope to see you soon.

  8. Shari Roybal says:

    Alex-My Daughter Maria told me your story. As you know Maria has a daughter Ella born within 2 days of your beautiful daughter. I am grateful to hear the wonderful outcome for your baby. This is the reason for many years we have supported Choc and I have in the past belonged to Los Ninos a group that raises money for the hospital. It was good to read your e-mail and to know specifically what is needed. Today I am going to an event with other women who also support Choc and will pass on the information regarding the need and your event. You are to be admired for your proactive stance on behalf of your daughter and other children. A Spirit to be admired-your giving and loving attitude. Looking forward to meeting you in the future-Shari Roybal

  9. Gigi Tsern says:

    Hi Alex,

    I am in tears reading your story, not only because I lost my 8 year old sweet son, Matthew, to leukemia two years ago (after three years of fighting, with two bone marrow transplants) and know your story so familiarly, but that your beautiful daughter is a success story…a beautiful survivor story to childhood cancer! Thank God. Embrace your time with your children. It is so precious! We started a non-profit organization called kidsSTRONG with some parents to help children with cancer and their families “survive” this ordeal at the hospitals.
    http://www.kidsSTRONG.org

  10. Thanks so much for your kind words Gigi. I learned about your organization while we were at CHOC, it’s wonderful. I think it’s beautiful that people like yourself, who have lost children to cancer, are so strong and reach out to help out so many others. Thank you for doing so.

  11. sky rondenet says:

    Alex. I can’t believe this happened to your sweet daughter and your family. Having a child has changed my life and I can’t imagine how this experience has been for you. My heart and prayers to the Universe go out to Emily and your family. I know she is going to be ok because she is brave like her momma.

    Much love to you.

  12. I had no idea that you had this in your past. I’m so grateful that your little Emily is doing well. We had a family friend lose their two year old to Neuroblastoma. It’s heartbreaking, and I’m so thankful that your little girl is okay!

  13. I’m so sorry to hear that Rachel. Neuroblastoma is no fun, it’s such a tricky disease. We truly are blessed that Emily is alive and healthy.

  14. I am incredibly touched by this story and can relate deeply as I too lived in your world..and in truth, I still do because as I am sure you are already aware, once you enter the world of pediatric cancer, it touches you FOREVER. Your daughter is beautiful and it is a joy to witness her strength and her smile and I am so happy for you and your family that she is thriving, despite her battles and such an inspiration to others. Bless you for sharing Alex and hope we can stay connected. In love and light and HOPE…Debi XOXO

  15. I am so glad they found and were able to treat your daughter. My son has had 2 kidney surgeries and it is nothing compared to what you went through with Emily. I admire your strength and wish you all health and much hapinness

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  1. Breezy Mama says:

    […] may have read that my daughter was diagnosed with cancer last month. As a result, we were in the hospital for a long period of time, and when we were […]

  2. Breezy Mama says:

    […] the day she was born – had cancer. By the time the show came around, the tumor had been removed, Emily was cancer free, but had yet to be released from the […]

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    […] Your Daughter has Cancer: 4 Words You Never Expect to Hear-Plus: Advice from a Pediatrician and Pedi… […]

  4. Breezy Mama says:

    […] past December, we found out there was another cancerous mass in my daughter (stay tuned for that story). We’ve been on an emotional roller coaster–going back and […]

  5. Breezy Mama says:

    […] You can read the first half of Emily’s story (her September diagnosis) by clicking here. […]

  6. […] Your Daughter has Cancer: 4 Words You Never Expect to Hear-Plus: Advice from a Pediatrician and Pedi… […]

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