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. I’m so glad this story has a happy ending. Thank you for sharing. Emily is such a cutie.

  2. Thank you so much for sharing your story, alex! You guys have been through so much, and you remain so positive and strong . As I have said before, little emily is amazing 🙂 So many people will benefit from reading your story.

  3. unbelievable…i’m sobbing. and sooo thankful your baby is cancer-free. thanks for sharing your story. i’m keeping emily and all of you in my prayers. xoxo

  4. Thank you for sharing your experiences so openly. I am thrilled that little Emily is back at home doing well. We love y’all!

  5. I still am so choked up reading this… We are so happy that Emily is okay. I am certain that those two weeks will have been the hardest in your lifetime.

  6. Alex, my heart goes out to you… I can’t stop the tears, except for the fact that Emily’s prognosis is excellent. Thank you for sharing.

  7. Valerie Sorrells says

    When we heard your story while you were living it our whole family felt such shock and cried. We kept positive thoughts and hopefull and were all so thankful she is ok. Your family has had a very hard couple of months and yet your courage and dedication gives hope to others who are going through their child’s cancer.
    Our hearts also go out to the Mother’s in your story for their loss and greatful to them for the information they shared.

  8. Thank you all for your sweet words–it was the hardest time in our lives, and knowing that Emily was in everyone’s thoughts and prayers helped us get through it.

  9. God bless you Alex, Emily and family. Your story was heart wrenching, I cannot begin to imagine how it all felt, but I am so glad all is well now. Thank you for sharing!

  10. Rebecca Tierney says

    This was very emotional to read Alex. I commend you for writing and sharing your experience with us. I am so happy that Emily is okay. I cannot imagine what you and your husband were feeling during this scary time of the unknown. Emily is so lucky and you are all so very blessed. To be able to leave that floor so quickly and without further treatment is a very rare thing indeed. I’m sure you have a whole new appreciate for life now and find yourselves “LIVING IN THE MOMENT” more often now. Enjoy your sweet little girl! She is a doll! God bless!

  11. No one should have to go through this. Big kisses to you and Emily for me. I’m so happy to hear she’s ok.

  12. I have read this article 3 times already today and each time I get tears. Thank you so much for sharing with us Alex and reminding us about what is really important in life!

  13. Yes, when they are grumpy and throwing tantrums, I keep telling myself at least the kids are here, with me, and I can hear them do it.

  14. Heidi Ferrer says

    Alex,

    I am so moved by your experience, what a horrible thing for any parent to go through. Emily is a very brave little girl. As someone who has seen many sick children in hospitals, I know that it forever changes you. Cancer is something that scares all of us, but for a child to have it is, by far, the worst situation of all. As many will say, I can’t imagine how you got through those days, but I am overjoyed that Emily will be just fine. God bless you and your family!

  15. Thank you for sharing your story, it left me in tears. I am soooo grateful that Emily was diagnosed so early and cared for so well. Big hugs and kisses for your little girl!

  16. Susie Harper says

    Oh Alex, I was crying reading this!! I can only imagine the horror, the helplessness, the need to find strength when you didn’t know you had any left!! I love you sharing this story, not only for the insight, but for the opportunity to remember to, “live in the moment”. Thank you. Blessings to you, Bowen and beautiful Emily!! Amazing…
    Love, Susie

  17. Alex,
    I am reading this and I am trying my best to hold back tears. I can’t imagine how scary this was. I am so glad to hear Emily is doing well, please know you are in my thoughts and I think its so brave of you to share this story.

    Much love to you and your family

    OXOXO Melissa

  18. Fantastic on so many levels! Fantastic that your baby is home and healthy, fantastic that you were able to stay so strong for your family, and of course fantastic that you are here, on the other side, able to share these details and emotions with us so eloquently. Thank you for the reminder that we should all “live in the moment” no matter what moment we are given.

  19. I love you Alex! Thank you so much for sharing your story. I am beyond relieved that Emily is doing so well and giving her hugs again is the best feeling in the world.

  20. Natalie Nelms says

    I’m so glad that she had such a great prognosis. She is such a sweetie. So cute! Your pediatrician caught it early and saved her life. :-). Can’t even imagine what you had to go through. Lots of love your way! Natalie

  21. Thank you for sharing your story Alex. I can’t imagine how difficult this time must have been for you and your whole family. What a sweet and brave liitle girl you have! So happy to hear she is cancer free. She will be in my prayers that she always stays that way.

  22. Alex, I am so proud of you. This is amazing that you were able to do this so soon and with such comprehensive information. While I am still crying, its tears of joy for Emily and all of you!! Thanks for writing this, I am sure this will be helpful for so many people. Love to all of you!!

  23. Alex you have such a natural and heartfelt way of writing your story. Thank you for sharing. Sending our blessings to you, Emily and the rest of your family.

  24. Heidi Burke-Pevney says

    I am moved to tears and so grateful your daughter is healthy! Thanks for sharing, Alex 🙂

  25. You all are so nice, this whole thing is bringing more tears! Tears for feeling so loved. I can’t keep up with all of these heartfelt comments, thank you all, they mean so much.

  26. Oh my heart is broken and inspired all at once! I am so happy for you that she has such a triumphant testimony to share. She is sure to have amazing moments ahead of her and an amazing mommy to ” live in each of them!” Big hugs to you all. What a little angel she is!

  27. Alex, you are one courageous woman. Emily is so fortunate to have a mom that can pull it together in even the worst of times. Please give Em an extra squeeze from us!

  28. Katie Kohn says

    So glad she is better. What a scary experience. Hope to see you all soon. xoxo

  29. Jessie Neiman says

    Emily came to this world for a reason. For sure it is TO STAY!!! and for a long long time. She is a fighter!!! She is strong!!! She is wonderful. Her pictures are amazing. Her sweet little smile, like saying:”don’t worry..everything will be ok”
    I am so happy she is ok . Congratulations to Mom, Dad, Brother, Grandparents for such a wonderful and strong little angel.

  30. Thank you Jessie, your kind words have made me cry. . .

  31. Hi Alex, your piece on your daughter has moved me to tears. When Jenelle told me about Emily’s battle with cancer, I was in shock (btw, we met you at Kendra’s b-day party back in August). She was immediately in our prayers. I am so relieved to know that she is recovering, doing well and cancer free. My daughter Malia spent her first 2 weeks of life at CHOC as well, so I can relate to your experience to a certain degree. I think we even had the same doctor, Dr. Lam, the pediatric surgeon who wears clogs, see Malia! Lots of love to you and your family. You are in our thoughts and prayers.

  32. Wow Alex,….I am so impressed that you could share this story! You are so strong and Emily, I am sure, thrived having you as her “rock” to get through this. She looked to you and you got her through it. I can’t possibly imagine having to deal with what you had to deal with. Literally, i don’t know how you held it together. The true definition of “a mother”. You are amazing. And, of course,..Bowen was there 100% with you. Thank God Emily has you guys for parents to support her and love her so much (and of course Kieren too!). Love you!!!

  33. Kim Bolton Anderson says

    Alex – Like all the other posters, I was so touched by this story. What a brave and beautiful little girl (and family)! I am SO glad to hear that Emily is OK. She is lucky to have such a strong mommy and loving family! All my best to you guys…

  34. Oh my gosh Alex… I was in tears. I cant believe that you guys had to go through this- what a strong little girl you have! I am so happy that she is doing well. We miss you guys at boot camp (i cant believe how big emily is now!). Thank you for sharing your story. Oh, and I am sure Emily will adore that picture of her and David Beckham when she is old enough to appreciate it hehe 😛

  35. First, I’m so grateful to read the good prognosis.

    Second, what a rollercoaster your story is. I deeply felt each up and down as we’ve riden the same ride with two of our children – although not to the same happy ending.

    I encourage everyone who has been touched by Emily’s story to participate in a cancer awareness/fund raising activity in the next year. Here’s our family’s story for this year’s Relay for Life event.

    http://nutsandboldts.typepad.com/chromosomes_cancer_kids/2009/06/i-missed-the-1st-lap.html

  36. With a 11 mo old myself, I could not imagine the stress that this has put you through. When you said that Dr. Lam wanted to carry Emily instead of having her “transported”, you got me. I had a vivid image in my head. Your precious daughter…so brave. I am so happy she is well, but I will keep her and your family in my prayers. Thank you for sharing. It reminds me how precious life really is.

  37. Hi, Alex- I finally got to sit down and read Emily’s ENTIRE story. I am SOOOO glad you are getting a happy ending! Emily is going to have quite a story to tell. She no doubt will live her life to the fullest! You never know…she could be the first woman President of the United States someday! I am so happy you took her in on time to her appointment. You are a great mommy(and a great friend). I love you. Now more than ever.

  38. Hi Alex, your story is really heart touching. A nine month old child undergoing cancer operation is shocking and painful but thanks to the Almighty and the physicians as everything ended well.

  39. Unbelieveable story. Alex, you have a beautiful family, and it’s easy to see that that gorgeous little Emily will be a powerhouse later…There’s nothing like a strong woman! I didn’t read your captions at first so I assumed that David Beckham was your husband. I’m sure he’s JUST as fabulous, but Man, I was jealous for a minute:). Give that little lady a hug. I love her and don’t even know her!

  40. Wow, Alex! I am so happy everything worked out okay. What a crazy ordeal you all went through. Hugs to you and your family! Emily is adorable!!

  41. Hi,
    Emily was very lucky indeed. Ava our 3 1/2 year old died in 2007 of neuroblastoma. This cancer is a monster that has no rival. More funding is needed if this cancer is to be stopped. We tried several different treatments over a one year period of time, and nothing worked for Ava, as her cancer had spread to all parts of her body. I think of her often many times a day. I miss her dearly.

    Congrats!

  42. Larry, I am so sorry that Ava is no longer physically here with you. Every minute of the day my husband and I think about how lucky Emily is, how lucky we are, that the neuroblastoma was staged as 2B. It’s not something we take for granted, and our hearts go out to parents with stories like yours. More funding is definitely needed. I’m sure you’ve been on the site, but if you look at the site, http://www.thepetitionsite.com/1/CureChildhoodCancer, it states that ALL pediatric cancers combined get only 3% of cancer research monies. I’m blown away by that fact.

  43. Lance, You and your family are very strong to have to go through not, one, but TWO cancer diagnoses. I can’t begin to imagine what your days were like, what your thoughts were, and how your family coped and survived. When faced with catastrophe, it’s amazing what we’re capable of, isn’t it?

  44. Alex,

    What a story! What a scary and emotionally challenging experience. I’m so happy to hear that Emily is going to be OK. She’s so freakin’ cute!!

  45. Alex, my heart broke for you and your family when I read this. Thank you so much for sharing your story! I’m so thankful your beautiful little girl is now cancer free.

  46. Alex, That is such a powerful report and so awesome that you have shared it. What a wonderful little girl, Emily seems. So happy that you guys are “through it”.

  47. Karla Galba says

    Hi Alex,I’m 69 years old and lost a niece 40 yrs ago when she was almost 5 yrs old.Her name was Noelle and she was a beautiful little girl.And sooo brave!!!She was on chemo for almost a year and unfortunately back then they didnt know anything compared to what they know and can do now.
    I just had a mastectomy on my right breast and I just wanted to let you know how wonderful it is that your precious Emily came through her ordeal so well.
    My heart and prayers are with you,thanks for sharing such a heart-warming success story with all of us.

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