4 New Words You Never Want to Hear: The Cancer Came Back

Emily, the day before what would be her third surgery.

You may have read my story about Emily, my daughter who was diagnosed with cancer this past September. Her tumor was taken out and we left the hospital without needing chemotherapy. She was having regular check-ups and scans, but there was a 15% chance the cancer would come back. I tried not to obsess over the 15%, but I did. Every time Emily was having fun at something, I would think such thoughts as, “What if she can’t enjoy this next year?” I kept telling myself to live in the moment–she was having monthly check-ups and bi-monthly CT scans–if it came back, it would be found and treated right away. And then, just as I was getting better about not thinking about it, that’s when it happened. Guess who fell into that 15% range?

We got the news . . .

December 3 and 4th, 2009, Emily had two follow-up scans: a CT scan which shows masses in the body, and a MIBG scan which is specific to Neuroblastoma, the name of Emily’s cancer. For the latter, she is injected with a radioactive dye that adheres to Neuroblastoma cells. We had the scans done and on December 5, I flew up to Canada with the kids for a family trip with my parents. We had been there for four days when we got the news–there was a mass, about 11 millimeters in size, showing up on the CT scan, and the MIBG scan was lighting up in the same place. I was incredulous–this little girl, who was laughing and crawling up and down the halls of our hotel had cancer in her?? I just couldn’t believe this was happening . . . again.

I talked to Dr. Rubin, her Oncologist from Children’s Hospital of Orange County (CHOC) who explained everything to me–that the mass was too small and too close to her spine to remove, that Emily would need chemotherapy, that new rounds of testing would need to be done to see if the cancer had spread, etc, etc. I was in shock. We were to meet with her as soon as we got home (she assured me there was no need to cancel the rest of the trip) and go over all the details. In the meantime, I had told her that we’d like to get a second opinion. She replied that as a mother, she couldn’t blame me, and offered to set one up with Dr. Judith Villablanca, a Neuroblastoma specialist at Children’s Hospital of Los Angeles (CHLA).

Emily's favorite mascot, CHOC's Choco Bear.

We came home that weekend and on Monday, my husband Bowen, and his parents, and I all found ourselves in the Oncologist’s office, going through the details of what this recurrence meant–it meant that Emily would be readmitted to the hospital, that she would need another bone scan to see if the cancer had spread there, another bone marrow aspiration to make sure there wasn’t any cancer in it, and another surgery to put in a central line–the tubing that goes in to a major vein in the neck and comes out of her chest. This is how the chemo is administered, along with any blood transfusions that are needed, fluids, etc. And then of course, we were given a lesson in chemotherapy–what exactly that means, the side effects (all I can remember as I walked out in a daze was the potential loss of fertility and hearing), what treatment will be like, the nausea, the precautions–how this would change all of our lives. It was numbing.

The next day, I was able to speak with Dr. Clarke Anderson, a Neuroblastoma specialist from City of Hope. Emily’s pediatrician, Dr. Jon Conti set this up–Dr. Conti had met Dr. Anderson during his residency at CHLA. Dr. Anderson was wonderful to talk to–allayed many of my fears about the chemotherapy, about what we were going through, and let me know how lucky we were that we had Dr. Villablanca working on the case to offer us a second opinion. Knowing Neuroblastoma like the back of her hand, he said to follow any advice she gave. So, when I received a call that afternoon from Dr. Rubin informing me that Dr. Villablanca suggested to remove the mass, we went for it. Dr. Rubin had talked to Emily’s surgeon from September, Dr. Lam, and he didn’t see why it couldn’t be done. Wednesday found us being admitted to CHOC to start the (September) process over. Surgery, and a central line placed in case she did need chemo, followed by the different tests to see if the cancer had spread.

Back in the hospital . . .

We got to our hospital room at 4:30 PM–but it took until midnight to get the IV placed in Emily to start fluids for the next day’s 7:30 AM surgery. Tired

Emily falls asleep in-between IV pokes.

and angry, we went to bed and had a restless night’s sleep. Early the next morning, we went through the same motions as we had only two months prior. Dr. Lam seemed confident that the mass could be removed, we gave her a kiss, and he carried her down the hall as she clutched her blankie and watched us. Though we’d been through this before, the tears kept falling. Two and half hours later, a mystified Dr. Lam came out from the operating room. “She’s clean!” he declared. “HUH?!?” was our first reaction. He said that he explored all around, up in her diaphragm, in her abdomen, everywhere, and he couldn’t find a mass, only scar tissue and the remaining gel that he applied to stop bleeding from his last surgery (which he removed this time). We were shocked, to say the least. As we walked in to see our baby girl in post-op–not a pretty site–we couldn’t help but wonder, “Was this all in vain?” Dr. Lam assured us it wasn’t–the body could recover much faster from surgery than chemo–and boy was he right–she was already crawling and climbing around the next day!

Recovering from surgery.

Since Dr. Lam couldn’t find any cancerous tissue, we decided to do another CT scan the day after surgery to see if the mass was still there. Unfortunately, it was. Once again, our hearts fell. Dr. Lam felt terrible–it obviously pained him to know that he couldn’t help her. He suggested that we get a Interventive Radiologist (IR) to do a biopsy of the mass so we could see “what” we were dealing with. After three days of recovery, Emily had the procedure done. Basically, she was laid on her stomach and sedated. The IR went in through her back, using a CT, which was being done at the same time, as a guide. The IR could see his needle go in to the mass and pull out a sample. After this procedure, we went home.

Bowen and Emily share a laugh.

While we were home, Bowen and his dad did some research of their own. We had all of the CT scans that had been done on Emily–two in September (pre and post op), another in October, and the one in December. The mass showed up in every one. This gave us hope that maybe the positive MIBG was a fluke (false positives are known to happen). However, our hopes were soon dashed on December 23–Dr. Rubin called saying that biopsy came back as cancerous. As a result, she was recommending more aggressive chemotherapy than what we were originally told–from four cycles to eight. She also said that Emily’s staging may be higher–from Stage 2B cancer to a Stage 4. WHAT?!? Her thinking was that since Dr. Lam couldn’t find the mass, that it was farther away from the original tumor site, hence, making it a higher stage of cancer. Dr. Rubin made sure we knew that wasn’t her official opinion, that she’d wait to hear what Dr. Villablanca and Dr. Anderson had to say, since they were the Neuroblastoma gurus (both were waiting to get pathology back before making their official recommendation).

So, Christmas came with a lot of tears, knowing that Emily would definitely have to go through chemo. Bowen and I talked about our future, how things would change (kids going through chemo have a huge amount of safety precautions), but we knew that it was all worth it so Emily could grow into the outstanding woman she’s meant to be.

A turn for the better . . .

Yum! Hospital food!

Then came December 30. Dr. Anderson and I were able to have a consult over the phone, and as we talked about Emily’s case he said, “You’re going to think I’m crazy, but she definitely doesn’t need chemo. I would find a surgeon who specializes in Neuroblastoma, get this thing out, and then keep an eye on her. If it can’t be removed, I think she just needs to be monitored closely.” Again, WHAT?!? To back up his recommendation, Dr. Anderson went into the specifics of Neuroblastoma, the biology of the disease, how it acts, and came to the conclusion that her Neuroblastoma falls into the middle of the spectrum–it’s not malignant, therefore, the cells don’t split as fast which result in them not being as affected by the chemo. And, the crazy thing about her Neuroblastoma histology is that there’s a good chance the cells could mature and integrate themselves as normal cells (which is something that Dr. Rubin had told us back in September). My jaw dropped to the floor. I called Bowen and we both didn’t want to get too excited–we would wait to see what our meeting with Dr. Villablanca would bring. Dr. Anderson reiterated what he had told me before–that she‘s a top Neuroblastoma doctor, and although the aforementioned was his recommendation, to do whatever she said.

That next day we made the trek up to Children’s Hospital of Los Angeles. The hospital is in the middle of Hollywood, so already it had a different vibe. It is bustling with people and you see kids with every sort of condition. We nervously waited for Dr. Villablanca–would she say the same thing as Dr. Anderson? She walked into the room, and the first thing out of her mouth was, “Your daughter is going to be okay.” Which was followed by a “And her cancer is still Stage 2B.” Just as Dr. Anderson did, she went into the biology of the disease, how it affects Emily, and then, she recommended the SAME THING Dr. Anderson did, verbatim. It was amazing to hear Dr. Villablanca speak, to hear about the cases just like Emily’s with those kids, years later, being just fine. Five years ago, she told us, they would’ve administered chemo on Emily without a second thought, but they were finding that it didn’t kill her type of Neuroblastoma cells. Instead, they started to closely follow cases like Emily’s and what they were finding was that the kids grew up to be healthy individuals without having chemo administered. (Please note, this recommendation was specific to Emily’s case. She has a lot of things going for her–she’s young, her tumor’s histology is favorable, there was no N-MYC gene, etc. Neuroblastoma is a deadly, tricky disease, and she was lucky. By the time it‘s found in many kids, the cancer has overtaken them, so those children may not have the same fate as her.)

We left Dr. Villablanca’s office happy and excited–what a way to celebrate the New Year! The next step was to meet with the CHLA surgeon, Dr. James Stein, who works on the majority of Neuroblastoma cases at that hospital. (Dr. Stein also made headlines when he separated two sets of conjoined twins in 2003 and 2006.) Meanwhile, we met with Dr. Rubin and told her we wanted to surgery instead of chemo–she replied with, “As an Oncologist, I’d like to see Emily get a little bit of chemo, but as a mother, I totally understand you not wanting to do it.” All three Oncologists were on our side and we felt lucky to have everyone’s blessing with the game plan. We had our consult with Dr. Stein a couple weeks later and he told us that he didn’t foresee a problem in getting the mass out. Surgery was scheduled for January 27, 2010 (so it would be done six weeks after the December 17 surgery), and the date couldn’t come soon enough.

At bath time, Emily's central line had to be covered up.

As we counted down the days to January 27, we stayed in our bubble. Remember, Emily had a central line in her, so she was prone to infections. If she had a fever of 100.5 degrees, we needed to rush to the ER–as parents, you know this temperature is nothing when it comes to pediatric fevers. We also had to take care of her line–flush it with heparin once a day, change the caps at the end of the tubes once a week, and change the dressing twice a week. These tubes lead straight into a major artery, so it’s nerve wracking–you don’t want them dirty, you can’t have them unclamped and uncapped or else blood may come out, and, Emily couldn’t touch them because there was a risk she could pull them out. So, we stayed at the house, only seeing friends if they were 110% healthy. It seemed as if there was always something going on with the central line too–she felt the flush and cried, bloody dressings, not being able to flush at all, etc. Things that scare the bejeebies out of you when you’re a parent having to act as a nurse. However, the one good thing about keeping it in was that Emily wouldn’t need a IV during her surgery–the medical staff would use the central line, and after getting the pathology back on the mass, it would be removed.

Time for surgery number three . . .

Emily waits in the pre-op room for her surgery with Dr. Stein.

January 27 came and as we found ourselves in the pre-operating room at the hospital, I told the

anesthesiologist and the nurses, “She has a central line, she won’t need an IV”, thinking our hard work of maintaining it would finally pay off. But, as the nurses tried to draw blood from it, it wouldn’t draw. They flushed it with saline, (and could see Emily’s reaction as she felt it go in), and it still didn’t work. Hmmmmm. They wheeled her off into surgery and said that she would need an IV, but would insert it after she was sedated and then they’d look at the positioning of the central line when she was under.

Bowen whispers words of encouragement before Emily is taken into the OR.

Three hours later, Dr. Stein came and met with us. He was 99% sure he removed the mass in question. Pathology did a quick “freeze” on it in the OR, and it showed calcification, but no Neuroblastoma. This was by no means a final result, but it did leave the 1% question if the correct mass was removed. And then, he said, the central line had moved, which means that it wasn’t working and there was no point in keeping it in. So, we consented to remove that as well. All that home care for nothing. Grrrrrrr.

Emily came out of surgery with a IV in each hand.

After surgery, Emily recovered quickly. This was a pretty easy stay in the hospital because there was no other testing–surgery, recovery, and then we’d be home. But, since Dr. Stein was only 99% sure the mass was removed, Bowen and I were pushing for a CT scan, and we got it Friday night. The next day, we were unofficially told by some of the surgical staff that the mass looked like it was gone, but she would need a MIBG scan to make sure there wasn’t any residual cancer. This didn’t come from Dr. Stein or Dr. Villablanca, so it was unofficial and we wouldn’t be told officially what was going on until Monday. We were able to go home Saturday afternoon, where we eagerly awaited the results of the CT scan and the pathology.

And then, we found out . . .

Bowen was home for lunch on Monday when an email came through from Dr. Villablanca. And what did it say? That the CT scan proved the mass was removed and the pathology results showed no Neuroblastoma cells. It seemed as if Emily didn’t fall into that 15%–the cancer was residual, and probably had been there all along–it just wasn’t removed in September. Dr. Villablanca’s recommendation was that Emily did not need any further treatment at this time, just periodic check-ups and scans. OH MY GOSH. It was finally time to celebrate.

In conclusion . . .

As I write this, the good news still hasn’t hit me. We have spent the last two months in emotional turmoil. We’ve

One last wagon ride before we're discharged from CHLA.

braced ourselves for the worst, and got the best. It’s hard to live life normally when you’ve stared death in the face. But what does hit me, is the amount of love that we’re surrounded by. It’s amazing to me how the people that are in your day to day lives–from the preschool director, to the distant neighbor, to the mom you see at the park–how all of these people, as well as those that you know so well, come together for you. They don’t think twice about doing and giving things that will help you during an extremely difficult time–something that will never cease to cause me wonder. Human nature is very kind indeed. Looking back, I’m also amazed at the fortitude of our little girl. She lived with tubes coming out of her chest for six weeks–she was in pain every time we flushed her, or had to change her dressing. But she literally bit her bottom lip and bared it. And also, for the power of second opinions–Dr. Rubin was wonderful in setting us up with a Neuroblastoma specialist–she put us with the best, and we couldn’t have been more appreciateive of that. What am I trying to say? Never take for granted what you have around you–love those who love you, and smile at those you don’t know. You’ll never know if you’ll need them someday.

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

Do you know of someone who has a child going through an illness? Check out these books for the sick child’s siblings by clicking here.

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Comments

  1. Maya Drake says

    After reading this article I had to take a moment and digest all that you and your family had to face and endure. I am so inspired by your family’s journey with Emily’s cancer and the lessons that you have learned. This is such an important article because it applies to every parent, every family, really every mother because we all need to be reminded how precious every day is with our children and with our families. Our smiles shared with one another is a simple acknowledgment of this powerful fact…we are here in this together and the support and love from one another…even strangers is a powerful and wonderful gift. Thanks for the beautiful article Alex. I am so moved by your strength and thoughtfulness.

  2. Thank you for sharing your story with us. We wish your family a happy and HEALTHY 2010 and beyond. 🙂

  3. WOW what a touching blog post! It is best to get a second opinion! When I was diagnosed with Crohn’s Disease back before my 16th birthday, my Doctor wanted me on more and more medication which did nothing but make me feel even more sick than before.. I finally got a home hospice nurse to tell my Doctor that something was really wrong, and there was! I had a blockage for almost a year and was in dire need of surgery.. not medication to mask the illness.. Thank God for that nurse because if not I might not be here today. Its still an uphill battle, switching to new Doctors due to moving.. I’m about to get another 2nd opinion now because my Doc I have now isn’t fixing the problem , he’s overmedicating just like the Doc in the past.. Its sad because we are supposed to trust some of these Doctors.. but I have a hard time because I know my body, and apparently they don’t? I pray that your little girl stays well and happy!

  4. Thanks, Alex for letting us go on this crazy journey with you. Those pictures of Em and Bowen are SO precious! Love you guys.

  5. I am very happy to read that Emily is doing well and is home safe with her family. My prayers go out to you and yours and will continue. Best of luck to you all.

  6. Amazing! I love you!

  7. Alex,

    I was so moved reading Emily’s story. It really hits home as a Mommy and just made my heart ache for you all. I am so happy that Emily is okay, yet so sad you all had to endure this again. I cannot imagine the fear you as parents endured. Thank you so much for sharing your story and for reinforcing the importance of never taking anything or anyone for granted. And loving those who love us. I will hug my kids just a little bit tighter today after reading this and praise God for their good health. Keeping you all in my prayers and hoping that this is the last of the scary stuff for you all.

  8. Wow, Alex, it’s still so hard to believe how much you’ve all been through the past 6 months! It’s an amazing story and we are so, so happy that Emily (and you guys!) can put this all behind you. We love you!

  9. Alex,
    I am in awe of your strength and intelligence (you could be a doctor). We are soooo relieved that emily is in the clear. Looking forward to beach days with you guys!

  10. Alex,
    Thank you so much for sharing your story. I am soo sorry you and your family have had to endure all of this. I am glad that you got the medical care Emily needed! As parents, we will go to any length for our little ones, wading through all the different medical opinions we get, and making the decision we feel is best. When Sydney was a baby, we got referred to CHLA and found the most amazing doctor there. All the staff there were wonderful and when they took our 7 month old back for surgery, they did so with love. You do really learn about those around you, who support you through difficult times. Thanks for sharing your story.

  11. I am in awe of you all, Alex. We are so happy Em is doing well again and looking forward to lots of good fun ahead!
    Love you!

  12. Once again, I’m in tears – but they are joyous! Hope to see you soon Alex – love to you and your family – you are all amazing…

  13. Alex this is wonderful news – thank you for sharing. We will be thinking and praying for you always.

  14. I wish I knew the ending before the beginning…..but then it wouldn’t be telling your journey. And, it probably wouldn’t make me cry any less. I don’t know how you have remained so strong. My thoughts and prayers are with you guys and Emily! Thank you for sharing.

  15. Sending you big hugs your way! I know that 2010 and beyond are going to be WONDERFUL for you!

  16. My heart is smiling! I am soo happy for you all and this day of GREAT celebration! Emily will be forever a part of our prayers if not only as a reminder to be grateful and of what Great things He is capable of! her steadfast health is such a beautiful reminder of this! big hugs to mama and papa.

  17. The strength of your family is truley admirable. You guys are an inspiration and we will always stand up with you in support. All kids are special, but Em really does have that extra special something : )

  18. Alex, I am so sorry for what you and your family have been going through, and I can’t begin to truly understand the emotional turmoil of it all. But I am soooo happy that the end result sounds as good as possible! Emily is beautiful, courageous, and so strong… truly, already a little hero.

    My thoughts are with you all! Many, many cheers,

    Sara

  19. What a touching story. I was sad to read it initially but am so happy to hear that everything has worked out. Your daughter is beautiful and you are amazing parents to have endured so much. xxoo

  20. I am moved to tears and so relieved about Em’s positive outcome. I couldn’t agree more with your conclusion on this difficult journey you and your family have undergone these past six months. Life is truly complicated and I am reminded by your strength and for every new, healthy day I have with my loved ones. Thank you for sharing your extraordinary experience.

  21. Heidi Ferrer says

    Alex,

    Alex,

    I’ve been thinking about you so often, especially in the last few days. I kept wanting to contact you, but didn’t want to intrude during such an intense and personal time. I’m crying tears of JOY for Emily and for you and your family!!! She will grow up to be the incredible woman she is meant to be, and she will know what an incredible mother and father she has. You are the strongest woman. YAYYYY EMILY!!!

    Love,

    Heidi Ferrer

  22. Thank you for sharing your story and how important and the difference a second opinion can make.

    Enjoy and celebrate life with your little girl!

    Theresa
    Managing Editor
    The Fashionable Bambino

  23. My best friend’s son was born with a neuroblastoma the size of an orange in his stomach. He had chemo for a long time. I did not have children at the time, but I was heartbroken for her. Now I have two children, I cannot even imagine the pain she went through. He is now a very happy healthy gorgeous 6 year old, and has been totally clear for 5 years.

    Your daughter is so very very beautiful, it shines through her eyes. I’m so happy for you.

  24. We been thinking about you. Emily is a trooper. Sending our love to your whole family!

  25. Alex,
    Thank you for sharing your amazing story with us all. I am brought to tears when I think of what you all have gone through. But you can see that Emily has such a joy in her. Even in these awful times her sweet smile and bright eyes light up the room. I am just so happy that you are back in the clear. We love you all and miss you all.

  26. Alex,
    As I write I am still in tears but I have to say you have once again amazed me. You write with such clarity and grace, I can’t even imagine being able to write this post. All of you continue to be in my thoughts and prayers and I can’t wait to give Em (and you too!) a big hug. She is a beautiful little girl and I look forward to watching her grow and enjoy life! Wow. I am so impressed. Sending our love to all of you!

  27. Pamela Rojas says

    Emily is an amazing warrior. We have kept her and rest of the family in our prayers and we are very happy to know that she is healthy.(my mum and I are very good friends of your mom)

  28. Oh Alex,
    I have been thinking of you so much lately and I have such admiration for your strength through this incredibly difficult time. I am so so relieved to hear about Emily. I have always been able to picture her as a beautiful grown girl, I just knew she would make it there! Lots of love to you, Bowen, Emily and Kieren!

  29. It is a powerful read to be taken through your journey. I was emotionally raw simply in the reading of the events and I can only imagine living them. Seeing the pics of Emily and Bowen/Emily together is especially touching. Thanks for sharing. I think every reader can be further inspired to be of help to others in need.

  30. Danielle Scherrer says

    I was sitting at my daughter’s soccer practice this afternoon chatting with other moms when I mentioned my daughter was a neuroblastoma. One of the moms said her good friends went through it over the last year. We were “lucky” enough to have been one of those 650 families a year to hear that their child has neuroblastoma. When my daughter, Maggie, was 26 months,she was diagnosed as stage 2a, unfavorable, diploid,N-MYC non-amplified. Hers was a thoracic neuroblastoma the came from her spine- from T3 – T10. It invaded her spinal canal in three spots.

    Just wanted to share with you that we too decided not to do chemo and she has residual tumor come up on scans. We still chose to wait and it has now been over three years and the remaining tumor has been stable.The oncologists think there is a good chance it has matured. Wwe started at scans every two weeks and are now at our first 1 year stretch! We had a few scares with activity on MiBG scans, but were convinced that chemo, without immediate need, would be more harmful than helpful.

    She is now 5, just started kindergarten and playing soccer!

    I will keep Emily in my prayers, but from what I have read and my experiences in the pediatric cancer world, I am confident Emily is going to be fine!

    Blessings,
    Danielle Scherrer

  31. This is a very inspiring article and it applies to every body. We need to thank God for everything that he has given us. And like the doctor said “Live in the moment”. God bless you and your child.

  32. Today, I had a horrible day with my 3 year old and my six week old. I mean one of those really really really bad days…was it cancer? Nope. It was just life and reading this I am reminded that I am one lucky mom!
    You are stronger than you know (as most moms eventually find out).

  33. Today, I had a horrible day with my 3 year old and my six week old. I mean one of those really really really bad days…was it cancer? Nope. It was just life and reading this I am reminded that I am one lucky mom!
    You are stronger than you know (as most moms eventually find out).

  34. Alex,

    I checked out breezymama.com tonight because Marisa mentioned to me that you and Chelsea had started this website. We were both reminiscing last night about HS memories as we look forward to our reunion next week. I had not heard that you and your family went through such heartwrenching struggles with your little one. It breaks my heart and also provides an amazing since of gratitude that Emily is OK. She is also very lucky to have such an intelligent, loving, and perservering Mom like you. I wish you all the best in Emily’s continued good health and look forward to seeing you all next week.

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