Today we're back with a story of perseverance with Lauren Anderson. Her touching story will melt your heart and give your a surge of resilience and hope.
Mom to: William (6), Eleanor (4), and Abigail (8 months
Briefly describe your experience over the last year with E's diagnosis and how you first started noticing something was wrong:
In June of last year we were having a picnic by the lake and William and Eleanor were running around. At one point William was trying to hug Eleanor and they collided and both fell to the ground crying. William had hurt his knee and Eleanor had hurt her back. After a little rest, they were both fine. However, that night and the next, Eleanor woke up crying and complaining of back pain.
After two nights, I took her in to see her pediatrician. Following a few negative tests for possible UTI/kidney issues, we got an x-ray. More inconclusive results, so we were referred to an orthopedic doctor at Primary Children's who told us that based on some swelling he could see, he suspected a lumbar compression fracture at L1, but it wasn’t entirely clear. With those results, we were given proper protocol on how to help her at home and the understanding that we should start to see some improvement within 2-3 weeks. But instead of getting better, her condition continued to get worse. She was in so much pain that it would bring her to tears when she would attempt to sit on the toilet, walk and oftentimes just sit up. She couldn’t sleep at night - the pain would wake her, every night.
In the meantime, we were trying to do what we thought was best for her by following the protocol from our pediatrician by encouraging her to sit at the table for meals and to go to the bathroom (at this point she had only been potty trained three months). But it was so heart-wrenching to see her in so much pain that we decided to put her back in diapers and to let her sit on the couch for meals. It continued to get worse where she was unable to walk - at all. As an Occupational Therapist who has worked with the geriatric population with compression fractures, I was sure after a bit more time had passed that we hadn’t reached the right diagnosis. I’ll never forget the second time I went with her to see the ortho doctor. He could tell that something was wrong, but he just didn’t know what. He said, “well we’re still throwing darts here, unfortunately.” As I left his office and made my way to the lab for them to draw her blood to check for possible autoimmune diseases, I distinctly remember crying the whole way there. At this point, my cute little 3-year-old is back in the stroller because she is unable to walk and we have no idea what has happened to her. It was crushing! Then on that day when I made a promise to her of “no pokes”, she had to get a blood draw and she just lost it. Thankfully, the blood draw came back negative, and the ortho decided we should proceed with a full-body MRI (as the previous one was just of the lumbar spine) with contrast dye to see if we could get a better sense of what was happening.
I can remember crying almost every night when I went to sleep at night just sick of worry for her. For over a month she was unable to walk, run, dance, and do all of the things she loved. I missed her running up to me and giving me spontaneous hugs. I felt so badly for her (and her brother) that she wasn't able to join William outside as he played in the sprinklers. She was up at all hours, crying from the pain. I hated seeing her in SO MUCH pain!! And, I was sick with worry about what was wrong, as we still didn't have any answers (and google was NOT a good idea as I kept googling possible diagnoses based on her symptoms, which left me incredibly unsettled).
The ortho called Aaron with the results of the second MRI. And this time, it was scary. They had found a mass in her L3 vertebrae. They asked us to come in to meet with the doctors to talk about the next steps. The next step for Eleanor would be to have a biopsy to determine what the mass was, and possible exploratory back surgery at the same time, and the oncologist gave us three possibilities of what he thought they would find. On July 23, she had her biopsy and surgery, and after several agonizing hours of waiting, the surgeons and doctors came to tell Aaron what they found. They told him that of the possible diagnoses that this could have been, we were lucky - it was the “best” one. They told us that Eleanor’s tumor was a result of something called Langerhans Cells Histiocytosis. This is an incredibly rare form of cancer that affects about five kids in a million. Like other cancers, it forms tumors - in Eleanor’s case, in her bones - but unlike other cancers, it doesn’t necessarily metastasize and spread to other systems. It either stays in the one place it started or stays in the same system (like her bones.) Her prognosis was good. She was going to be ok. The surgery got most of the tumor out. But there was still plenty of healing and monitoring ahead. To our great relief and joy, within a week of her surgery, she took her first steps, again. And within another week she was walking again regularly. Her joy was coming back. She was out of pain, finally!!
We were hopeful that the tumor in her back would be the only one. But LCH can be stubborn and can show up in other bones, or recur after periods of dormancy. The condition that caused her Langerhans cells to cluster like this needed to be treated. She was put on an intense regimen of prednisone to help wipe out the LCH. Thank goodness, she was doing so much better - healing, and managing her meds well, and back to being herself just in time for her new baby sister’s birth in the second week of August.
However, in September, just after finishing her prednisone regimen, she began complaining regularly of left leg pain and we weren't sure if it was related to her biopsy and decreased structural integrity of her lumbar spine from the LCH. However, it began to get worse, and in a way mimicked what she had gone through months prior with her back. She was up at night, in pain again. Although an x-ray came back negative, and just a bit more time spent monitoring things, we took her for another MRI that sure enough, showed another tumor, this time in her left iliac (hip) bone.
Because she had had two tumors so closely together, and because it was clear that the condition was not isolated to a single location, our (excellent, by the way) doctor treating this condition knew that the treatment of prednisone alone was not enough to silence the LCH that was causing lesions, and it was very likely that she would continue to develop further lesions unless we tried a more aggressive treatment approach- chemotherapy.
It’s still hard to say that word in the same sentence as our little Eleanor, even after months of it being our reality. In October, Eleanor had to have another surgery to implant a port into her mainline to receive chemotherapy. Initially, she had to go in for her chemotherapy once a week for six straight weeks, and now she is going every three weeks for a year total. The first few times were particularly terrible - everything was new, and scary, and painful, and confusing for our little sweetheart. She cried and cried and cried every time. And every time they started her chemotherapy, at about three minutes in, the taste of the poison going into her would reach her mouth, and she would gag. But every time Aaron would ask if she wanted to stop or take a break, she would fight through her tears and say “it’s ok dad. I can do it. I can do it.” Our little superhero.
Thankfully, she has gotten more adjusted to it. And from the first one on, she has bounced back almost immediately, back to herself by the time she gets home. We’ve had a few little complications with infections and other issues, one landing her in the hospital for a few days at the start of the new year, but she keeps bouncing back, keeps forging ahead. And now, gratefully, she is a little past the halfway point with her chemotherapy. She has quarterly MRIs to check for progress and her most recent one on March 30th showed that both the tumors (in her back and hip) have completely resolved - they are gone! What a HUGE relief!! Eleanor has been incredibly strong and brave, and she’s back to full energy - jumping off couches, racing with William, riding her balance bike, and best of all, back to skipping and dancing through life the way she did before, and the way we hope she always will.
She still has good/bad days but overall she is such a trooper. But the degree of difficulty of all of this has been so much higher due to the pandemic. Because chemotherapy compromises her immune system, making her susceptible to infection (which means Covid) and she cannot receive a vaccine, we have had to be especially cautious to keep her safe and protected, which has been incredibly difficult and stressful, and very isolating.
- Who or what helped keep you grounded during this challenging time?
I could not get through this without the support and strength of my husband. He is the parent who worries more over the kids’ than I do with basic colds and such, and I know that this has been very hard on him (especially since he has to take Eleanor to all of her surgeries, chemotherapy appointments, and MRIs since I have to stay with the baby since I am nursing her, which has been SO hard for me as well- not being able to be there with her!!), but he has talked me off so many ledges of worry and despair, especially during the summer before we had answers. My mother-in-law has been able to come to stay with us for long stretches, and she was especially helpful during the stretch after the baby was born and Eleanor was starting chemotherapy. And my mom, living far away in Canada, was able to be here after the baby was born, as well, which was a huge help, and has provided such guidance and support from a distance every single day. We have been so fortunate to have so many friends reach out and ask what they can do for us and offer dinner and generous gifts for Eleanor that have touched us deeply. Even though LCH is fairly rare, we have the BEST hematologist working with us and overseeing Eleanor’s care who is an LCH expert and has been so incredible working with her. Additionally, I have truly felt the heartfelt love and prayers from friends and family during this difficult time, which I know has given not just myself, but all of us the strength to persevere.
- How did you balance the needs of your other children, family, and yourself while also handling this stressful situation?
We were very worried about our eldest son having issues with Eleanor getting a lot of attention since he is generally very needy for attention in general, but he LOVES his best buddy Eleanor, and he was worried about her too. He didn’t have an ounce of resentment toward her. Oftentimes when she would want us to make her a bed on the couch after her surgeries, or MRIs, William would request a bed on the other couch too. At his request, we’ve made signs, cards, and surprises for Eleanor to welcome her home every time she is gone to another visit to Primary Children's. On Eleanor’s chemotherapy days, I try to take that time to spend one on one (well as best as I can with the baby at home too) time with William.
- What advice would you give to parents in a similar situation (or any parent who is dealing with uncertain challenges or loss)?
For me, it was important to listen to my gut. I just remember not feeling settled with the first diagnosis we were given. So based on my professional expertise as well as my gut, I knew we needed further answers. I would encourage parents going through a health challenge with their children to get a second opinion if for some reason they don’t feel satisfied with the first one.
One thing my husband taught me is to not catastrophize, meaning, to not get my mind in the depths of despair about the future, but to take it one day at a time.
Lastly, and I don’t necessarily mean to preach, but I can’t emphasize how important it has been for me to lean into my faith. Seeking support and comfort and peace from the divine, finding solace in prayer, looking to understand how I can learn from this, how I can be a better mom from having gone through it and looking to the examples of my kids who are so pure and innocent and close to the divine as they asked for healing for Eleanor - all of these were so important to my survival, sanity, and perspective through all of this.
- What did this experience teach you about resilience?
It is SO easy to get down and discouraged in times of huge trial and when I have become so, I have easily let that affect how I am as a mom at times with increased impatience and exhaustion from our situation with Eleanor as well as living through a pandemic that seems at times to have no end in sight. Additionally, I would find myself alone in tears occasionally throughout the day (more so during the periods when we didn’t have answers for Eleanor), however, I knew that I had to stay positive for her, me, and frankly for the rest of our family. And I had to take it one day at a time, going off of the advice that Aaron gave me. I had to make the most of each moment and focus on the positives even when they seemed hard to come by. When times were particularly tough, we celebrated tiny walks from one couch to the next. Focusing on the positives helped to pull me out of any despair. Looking back almost a year now since it all began, I am reminded that although at moments it can seem like we will never get through this trial, I know God knows what we are capable of and that we are given trials that we will be able to overcome through his help. The thought of having a child with cancer and having to be on chemotherapy has always been a nightmare of mine, and yet, we are going through it and it is our reality, but we are surviving and we are doing just fine, once again I believe because of our prayers and all of the many prayers on our behalf.
- Update on E:
So many wonderful family members and friends will check in on me and ask how Eleanor is doing. She is halfway through her chemotherapy and handling it a lot better than in the beginning. She told me tonight that she likes going to chemotherapy because “I can play games on dad’s phone and draw pictures on the whiteboard. But when they take the tape off (her port) I cry sometimes.” Luckily, she hasn’t had any side effects and she is happy and her spirits are up and she is riding her bike, running, dancing, and skipping as though she wasn't even on chemotherapy. It is hard that she has to go through these treatments, but knowing that her prognosis is good and that her last MRI showed that her lesions were resolved (so it is working!) and that she is happy and her cute little self brings me so much happiness and peace!