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Our Families

The Bares Family

How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.

The first year with Laurel was beautiful.

We noticed when she was about 10 months old that she was easily fatigued and very picky when it came to food. Our pediatrician in Plymouth, MA dismissed our concerns. Her weight loss was described instead as her “being svelte and having great genes.” At her one year appointment, her pediatrician massaged her abdomen and Laurel shrieked, to which the doctor replied, “she must know she is about to get her shots.”

A week later, a softball-sized mass was discovered on her left adrenal gland at Children’s Hospital. I had rushed her there as I knew that something was seriously wrong – despite said pediatrician assuring me she was fine. Because Laurel was so sick upon arrival, she was intubated for a week in the ICU and that’s when we began chemotherapy. We stayed in the ICU for 42 days until we were transferred to the Pediatric Oncology floor.

What did receiving the devastating news of your child’s serious illness feel like for your family?

We didn’t receive all of the news at once, but over the course of a few days, we learned that the mass was cancer, that it was Neuroblastoma in its most malignant form, and that it had spread to her bones. I had a feeling at that point that she wasn’t going to make it. I stood over her crib in the ICU for 2 weeks without glasses on in the same outfit while she was intubated. I’m not sure if I prayed or bartered with a higher being. I told my husband that if she died, I would die too. A month later, I learned I was pregnant with our son. He saved me from taking my life.

How did your child’s treatment progress? Describe one or two of the hardest moments. If you can, tell us a bit about their final days and end of life.

Laurel’s treatment was excruciating to bear witness to. It pains me to even have to pick one or two hardest moments – I can think of two times where I howled crying for my dying child.

The first moment was after 3 months of intense chemotherapy when she was getting scanned so that we could make sure that the bone cancer subsided in order for us to progress with the next stage of treatment – Stem Cell Therapy. The scan was taking a really long time. She was sedated and they had to re-sedate her to keep scanning. Because my husband worked in MRI (at Boston Children’s Hospital at the time- go figure), he knew that something was seriously wrong. Her Neuroblastoma doctor came to the waiting room and told us that her cancer had only spread – that the chemotherapy had done nothing. What we had put our child through – all of the hell and agony of watching your kid throw up, lose hair, become a skeleton – all of this treatment had done nothing. The cancer was too aggressive. This was considered a “relapse” and the doctors gave her a 10% chance of living. I called my mom because she expected us home much earlier from the scan, and I howled and cried that she was dying, that Laurel was dying and we couldn’t save her, My belly was starting to show with her new baby brother and I wept uncontrollably for hours and days. That’s when I knew she wouldn’t make it. She lived another 11 months through integrative therapies (novel immunotherapy treatments and naturopathy).

The second hardest moment was a few short weeks after finding out she relapsed, I left her room to meet a best friend that had dropped off a care package for us. My husband was standing with Laurel – she was hooked up with a chemotherapy IV and she reached for something and fell down on the floor. Although I wasn’t there, it was like any toddler fall. But because her bones were so brittle, she ended up breaking her left femur (thigh bone). The resident doctor on the floor refused to schedule us an X-Ray, despite Laurel crying in pain. She instead ordered Tylenol and got an ice pack. My full mama bear rage came out – I told this resident, “F your ice pack, order her an X-Ray now.” She saw in my eyes that I was not going to back done. The X-Ray revealed a full fracture and Laurel was placed in a full spica cast that immobilized her hips and legs. She could not walk and had to be picked up to be moved for 6 weeks. She wore a diaper that I could not change because the cast was in the way and keeping her clean was very difficult, but I committed myself to making sure she did not get any skin infections or chafing. I was almost 6 months pregnant carrying Laurel around on my hip in August. We could not travel or bring her to the beach. It was so hard to watch Laurel go through this on top of everything else. She finally had the cast cut so that I could remove the top half and it like a Velcro contraption. One day, my mom’s good friend visited me to help with household tasks. She raised 6 children herself and a very seasoned mum. She knew that Laurel had another 2 weeks to go in the cast, per the doctors orders, but said to me softly, “Leah, let’s remove the cast and let her legs rest.” Laurel, as sick as she was, was so excited to take that cast off. First she laid flat, rolled around, and then got up to walk without question. I remember being able to bathe her for the first time without that spica cast and it was one of the happiest moments for us both!

Laurel was doing well with immunotherapy – she had about 12 rounds of it and it helped her Curie score (how prevalent her cancer was in her bones) decrease from a 17 at relapse to a stable 8 at Easter time 2018. We noticed though that she seemed to have increase leg pain. During a stay for immunotherapy, the team ran her vitals and noticed that she had more white blood cell blasts in her blood – this was a sure sign of another cancer, AML. Laurel was then diagnosed with an extremely rare cancer called MLL, which was *caused* by a chemotherapy drug, Etoposide. Treating AML and Neuroblastoma was like treating apples and oranges. From the date we received the secondary diagnosis to when she died, it was only 21 days. We decided to take her home to our little beachside home. She was on oxygen for a week and we had family and friends visit her. Someone gave her a beautiful bouquet of flowers and she took each flower out and handed individually to all of our people visiting her.

Laurel died in our bed between my husband and I in the early morning of June 15, 2018. We were up with her the night before, singing songs and reading and telling her she was the love of our life. I must have drifted off to sleep around 4 am. My husband stayed up with her and he watched her to take her last breath. He closed her eyes and woke me up to tell me she was gone.

I couldn’t believe how peaceful she looked when I cleaned her face and removed her breathing tube and the tape that held it to her. I washed her little cheeks and face and put her in a dress her aunt made her. We slowly took all the flowers we received in the home and placed them around her. We lit candles and said prayers and spoke to her and had to let her go. When someone came from the funeral home to pick her up, she carried Laurel in a blanket our family made her, flowers all around her, and our Newfoundland escorted Laurel to the van. It was the most devastatingly beautiful release of my life.

What made your child unique? What were some of your child’s favorite things to do during treatment? Did they have heroes, sources of comfort & joy?

Before Laurel was sick (and even after too), strangers would stop me and tell me how she looked like “an old soul” with those big eyes. Laurel was kind and gentle. She always gave things away. She loved ladybugs and pointed them out in books or whenever she saw one.

Laurel loved to dance and wiggle. Despite everything she went through, she only wanted to smile and comfort us.

Before she passed away, her Dad tucked her in one night and she touched his face with both hands and said clearly, “I’ll miss you Dad.” She was only 26 months old.

How are you dealing with your grief? How are your surviving children or partner managing now? What are some of the things that help your family keep going?

I’m in my 4th year of bereavement this year and I am finally able to live the day-to-day without intense rage and anger for what happened to our sweet Laurel Pearl. My anger ruled my life for a few years. I remember being unable to see children for a long time, I could not even look at a family or friend’s child. I became pregnant with our third baby, Julia, three months after Laurel’s death. My pregnancy kept my sober – it allowed me to process what had just happened with a clear head. After Julia was born in 2019, I went on and off antidepressants to just get through the day. So much had happened in so little time, but it became better for me to feel these emotions instead of numbing them out with medication.

Our family keeps going because it’s simple – what is the other option? I can’t spend the rest of my days living in a dark basement wallowing in my grief. Boden and Julia deserve a happy childhood and the best from their parents. My husband and I pledged to keep going no matter what. Yes, it gets very difficult and the grief of our former life and the questioning of the “what could have been” is hard to not get wrapped up in.

There was one moment I remember though – and this is a moment I will never forget. We were inpatient in December 2017 and Laurel was asleep in the hospital bed. I crept out of the bed and went to wash my face. I was standing in the bathroom, 9 months pregnant and my face was probably looking ravaged and tired. I remember looking into the mirror and telling myself, “you are doing this – you are giving it your all – no matter what happens, she knows how much you love and care for her. Keep going, Leah.” And so, I did. That moment was a pivotal point in my life as a young mom. I forgave myself and God or Buddha or higher power. I acknowledged how hard it was and how hard it would be going forward. I surrendered.

Do you have any advice for a family facing the end-of-life of their child? What helped you most? Are there any organizations that we can share as resources to other families?

Well, I know not every family can take their child home, but that decision brought my husband and I great peace. I also decided not to bury Laurel, instead she was cremated. I think about that now as we have moved different states and I am able to keep her close to me. We had a porcelain vessel made to hold her, ordained with gold and turquoise. It reminds me of the Sea, of Moana, of Laurel.

How has finding Rett’s Roost been helpful to you?

The Roost has taught me to process Laurel’s death in a holistic way. It has allowed me to meet other bereaved cancer moms and dads that I would otherwise not have known. I learned that I don’t have to go through this grief journey alone and I do not have to feel terrible inside for all of the trauma we went through.

My heart and soul are aligned with Rett’s Roost’s mission. We will grieve as parents for the rest of our lives. But we must forgive ourselves at some point and this organization has helped rebuild my mind, body, family, and community.

The Jarboe Family

How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.

June Helen Jarboe almost came into this world prematurely at 21 weeks gestation. I (her mama) was hospitalized for a week while in active labor, and then suddenly the labor subsided. I went home on bedrest for 17 weeks. June was born a beautiful, healthy baby. About two weeks after her birth she started having a 4-5 hour “witching hour”. Our first child never experienced this, so it was much different with June. I always attribute it to her being uncomfortable. It lasted about 4 months and that’s about the same time June stopped sleeping in her crib at night. She would only sleep in my arms. When she cried, to me, she sounded like she was in pain. We slept together most nights of the week in our guest room. At the same time, she started having incredible night and day time sweats. When I would take her out of her crib at nap time she had a halo of sweat around her head. She stopped being able to take bottles more than 2 oz at a time and she became very constipated. She was white as a sheet and very lethargic. Thats the time I found the tumor in her belly. She was up crying all night for three consecutive nights and it was then I stripped off her clothes and began examining her body. It felt like she was screaming in pain. I turned her little body side to side and thats when I saw the lump. The following day I brought her to urgent care and the pediatrician told me she could feel her entire spleen which was abnormal. So either she was sequestering blood due to some viral process or she had cancer. I blacked out. Only a few hours later the doctor called with her lab results saying she was severely anemic and we were to go to the hospital for a blood transfusion. It was that fateful night we received the diagnosis of a tumor. Our lives have never been the same.

What did receiving the devastating news of your child’s serious illness feel like for your family?

Our entire lives were up-ended with June’s diagnosis. We learned that her prognosis wasn’t good, however given all of the unknowns she might have been able to overcome the disease. When we found the cancer, it was solidified to a main tumor and a smaller tumor that had grown off of it and around her aorta like a vine. She, unlike many other children diagnosed, was very young (under 1 year) and the disease had not entered her bone marrow. It was contained to the tumor and one lesion on her liver which the tumor abutted. There were promising aspects to her diagnosis and our family survived trying to suckle every bit of hope out of the situation that existed.

How did your child’s treatment progress? Describe one or two of the hardest moments. If you can, tell us a bit about their final days and end of life.

June’s treatment (we were told from the beginning) was going to be 18 months long: 5 rounds of chemo, surgery to remove tumor, a tandem stem cell transplant, followed by radiation for a month and 7 months of immunotherapy. Taxing. Exhausting. Life-threatening treatment. June completed 4 rounds of chemo and the tumor responded positively by shrinking immensely. For the first time, we were able to see our baby eating, sleeping, comfortable. Hindsight is 20/20, but truthfully it made us understand she had been sick her entire life to see her happy and herself. We began treatment in June of 2021 and by the fall only 6 months later, June was cancer-free. Her scans after her surgery and a fifth round of chemo were completely CLEAR. We went into two stem cell transplants at Boston Children’s (back to back) incredibly hopeful. We spent two months (with a 3 week break between at Christmas) at BCH watching our baby suffer the most enduring therapy. We watched her almost die multiple times, but in the end she always recovered. Our strong girl put up the greatest fight and did everything we asked of her. We returned home and throughout the process June had acquired multiple line infections, When we arrived home at the end of January, she got really sick and we were readmitted to the hospital for long term antibiotics for two weeks. They removed her line and she came home again. They wanted to give her body a break, so they delayed radiation for a month. We spent (what we hadn’t know at the time) the last month of Junes life sleeping, playing, eating a little her and there, but just enjoying our lives again. Full of hope. June didn’t make a comeback like she had previously from the first transplant, but they had told us she was going to be weak for quite some time. The week June died we thought she had come down with a virus going around. We brought her to the hospital because she was weak and unable to eat. During that admission they decided they would start radiation and do the mapping. When she came out of the mapping they told us the cancer had returned ten-fold. It was all over her body, We took our baby home that afternoon and she passed away two days later in her mama and daddy’s bed.

What made your child unique? What were some of your child’s favorite things to do during treatment? Did they have heroes, sources of comfort & joy?

June was an amazingly spirited girl. She was the happiest, always, despite life’s circumstances. She completed treatment with beauty and grace. She is and was our angel and she will forever be the strongest person we have ever met. During treatment, June loved music therapy. It brought her so much joy. We always thought she would grow up to be a musician of some sort like her grandfather, Chief.

How are you dealing with your grief? How are your surviving children or partner managing now? What are some of the things that help your family keep going?

We are handling our grief very differently, however we are understanding of one another. We have been through hell and back and fortunately our family has continued to grow stronger because of it. Individually, we attend therapy, and we participate in a grief group at the Center for Grieving Children. We attended Rett’s Roost bereavement retreat which has opened a new network of support for our family. We have made some wonderful friends throughout the process. For me (mama) I need some form of meditation every day, whether it be exercise or actual guided meditation, or yoga. I find that if I let myself feel all my feelings for 10 or 20 minutes per day and allow myself to cry (my favorite form of moving emotion) I am able to honor June and move on with my day as a mom to a 6 month old and 4 year old. Our family is trying to live life to the fullest because our sweet June is unable to and with us we carry her memory and talk about her always no matter what we do or where we go.

Do you have any advice for a family facing the end-of-life of their child? What helped you most? Are there any organizations that we can share as resources to other families?

Find someone that you can talk to (when you are ready) who has been through what you are going through. It helps me most to talk with my friends who have lost a child. Find a therapist you love and who will support you during this tender and profoundly vulnerable time. Find a way to self-transcend. Look within yourself, you have all the resources (although you may not know now) within you to overcome life’s worst hurdle of losing a child and you will be okay. I wish I had more resources, however this is what I’ve found most helpful.

How has finding Rett’s Roost been helpful to you?

Rett’s Roost has opened a door for our family that did not exist. It has helped us in our grief journey to not feel so alone. We have found lifelong friends through Rett’s Roost and although the most unfortunate circumstances brought us together, we are forever grateful that this opportunity presented itself. Thank you Deana, Jim, Evie and Rett.

The Silvani Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given?

Joe was diagnosed with Stage IV neuroblastoma in June of 2015.

What did receiving that devastating news feel like for your family?

It’s hard to describe what it was like. Time stopped. Priorities changed in an instant. Suddenly our future was a giant black hole, a giant question mark, with a good possibility our child would die despite our efforts to save him. Our sole focus was on Joe, which put our other two children on the back burner.

How did their treatment progress? How is their health now?

Joe’s treatment plan was extensive and intense. Neuroblastoma is a very difficult cancer to treat, especially in Joe’s case where he had disease in his bones. He spent much of his treatment in patient at Boston Childrens Hospital. He endured 6 rounds of inpatient chemotherapy, tandem stem cell transplants (which are identical in procedure to bone marrow transplants, just with his own stem cells), 20 rounds of radiation, and 6 rounds of antibody therapy. All told, he spent 210 days in the hospital in the course of 18 months.

Joe made it through treatment relatively well. He developed a severe and rare complication while undergoing his stem cell transplants called transplant-associated thrombotic microangiopathy, which presented as nonexistent platelets and hard to control high blood pressure. He required an infusion of an expensive drug called eculizumab every 2 weeks to keep his condition controlled, which he was finally able to discontinue in February of 2017. By last year he was finally able to wean off all his blood pressure medications (which was 6 of them at one point) and is doing incredibly well right now.

What are some of the things that helped your family get through your child’s diagnosis and treatment?

Our family and friends were definitely saving graces for us. Often Joe would be admitted unexpectedly–usually in the middle of the night–, leaving Adam and the older two kids to scramble. Adam was the sole breadwinner as I had taken a year off from my position as a teacher in order to care for Joe. Friends and family jumped in to fill the holes in care and food, held fundraisers, and sent gifts to Joe while he was in the hospital. The Jimmy Fund and BCH also have incredible social workers and child life teams that help families in need with programs, grants, and opportunities for families who are inpatient.

How did your other children handle their sibling’s cancer challenges?

We were thankful that our children were younger when Joe was diagnosed, though they still dealt with the absence of me and Joe. We decided to try and shelter them from Joe’s care as much as possible so as to not scare them– they only visited the hospital a few times while we were there, and we tried to keep things as normal as possible for them.

What are some things that make your child with cancer unique?

Having dealt with adults for a large portion of his formative years, Joe can talk to anyone. He loves engaging people, asking questions, and being involved with everyone. He is inquisitive and thoughtful, just the sweetest boy around.

What is one thing you wish you could tell everyone about childhood cancer?

Many people believe when treatment is over, the ordeal is over. Honestly, it’s just begun. Post treatment life is nothing the family is prepared for, and support is needed even more as caregivers and families process the experience. There is a giant hole in services when it comes to post treatment support and care, especially in areas away from the hospitals of treatment.

How did you find out about Rett’s Roost?

Searching for other people in our situation, looking to connect with other families, I stumbled upon Rett’s Roost and its mission.

What is your favorite memory or most positive outcome of attending a Rett’s Roost retreat?

We attended a retreat at Duck Puddle Campground and it was amazing. We felt so taken care of, we were able to meet with a therapist who also had a child with a cancer diagnosis, and we were able to just be with other families who had similar experiences. It was so healing and needed, and I knew I just needed to be involved with this incredible organization. What makes RR special is that despite its roots in grief, Deana and Jim also open their hearts to survivors. This makes them very special indeed.

The Tajima Family

Our daughter, Addison, was diagnosed with high risk neuroblastoma at eighteen months old. She had a grapefruit-sized tumor originating in her right adrenal gland, basically flattening all organs around it. Over the course of a year, she underwent six rounds of chemo, a massive abdominal tumor resection, a stem cell transplant including a one hundred day isolation, twenty rounds of proton radiation, and five out of six rounds of antibody therapy.

She is in the process of completing the final sixth round of antibody therapy. Watching this happen to our baby has shaken everything about ourselves and our family. What matters? What can we trust? What can we hope for? How can we be sure about anything in life?

Addison is now thriving, growing, and as happy as any other two year old I know. She lives each day to the fullest and seeks happiness in every situation. She is loving and thoughtful. I like to think that she has her priorities straight! In this lies our answers. Each moment is a moment to cherish. We can’t know what tomorrow may bring, but we don’t want to waste what we have right now. We laugh, love, and play as much as possible. We cherish our children and we’re grateful for each other. Today, this is enough.