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.

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.

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.

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.

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.

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.

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.