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Our Families

Princess & Madison

In May of 2019, 12-year-old Madison (Maddie) started experiencing unrelenting stomach pain that lasted for months. In October, she was incorrectly diagnosed with Mononucleosis. When her health continued to suffer, the doctors finally ordered a scan and discovered tumors on her liver. By this time, Maddie was already at stage 4 and it took nearly two months to determine the type of cancer she had, which was not a “good one.” Acinar cell carcinomas are highly aggressive neoplasms, with a median survival for patients with metastatic disease of 14 months, and an overall 5-year survival rate of less than 10 percent. The other painful news was that ACC is extremely rare in children, with only 25 known cases in the literature.

In March of 2020, right before the start of the pandemic, she underwent surgery to remove her tumors. and started aggressive chemotherapy to keep the tumors from growing back. For the next 8 months she stayed cancer free, but in that time, she developed Type 1 diabetes and a conversion disorder that caused tremors and seizures nearly every waking moment.

In August 2020, Maddie rang the bell, but it didn’t mean that she would be able to go home. She had lost the ability to walk and still needed a lot of medical care. She did recover from the seizures and was able to learn to walk again (you would never know her struggles seeing her today).

By November though, she had relapsed, and was given just 6 months to live. They enrolled Maddie in a clinical trial since the treatment options were nonexistent for a child with this type of cancer. She also received radiation to fight back the tumors. Yet they continued to grow, and in April of 2021 Maddie’s mom Princess was told there was nothing more they could do and that her daughter may not survive another week.

Princess fought back. She could not accept this fate for her daughter. She transferred Maddie to a different hospital and continued with an off-label protocol and chemotherapy. By May, Maddie miraculously had no evidence of disease! In December of 2021, she finished chemotherapy and rang the bell again! It is now 1.5 years later and she continues to have clear scans.

Maddie truly is a phenomenon, and we recognized that as soon as we met her in 2021. It was the pandemic, and at that time we were giving out family grants and offering individual family trips to Maine. After hearing Maddie’s story, we offered them both. And had the joy of meeting this incredible mom and daughter duo. We continued to stay in touch, and this year, we invited them back to a full retreat. Even though they live in Ohio, Princess will go to the ends of the earth for her daughter, and so they hopped in the car to come back to Maine.

You never know if teens will enjoy our retreats. Most take a while to warm up to the idea of connecting with new friends of all ages that have experienced cancer as a patient or sibling. Not Maddie though (who is now 16)! This girl’s smile beamed as soon as she arrived. She was the oldest of the group, yet, she got right in there with the younger kids to throw water balloons, paddle a kayak, ride a horse, hold a snake, or show off her incredible acrobatic skills. Maddie is a marvel–it’s unquestionable.

This is what Maddie had to say after our retreat, “Going into the retreat I was somewhat nervous because I had never been on this type of away trip/ retreat before, and so I was nervous to see what was to come. Safe to say, I had one of the best times of my life. By the end of the retreat, I had made some amazing memories and friendships, that will probably last me a lifetime, including my first-ever trip kayaking on one retreat, SUP boarding, my first time going to the circus, and holding a snake around my neck. The majority of these things I wouldn’t do “willingly” but given the circumstances and being able to connect with other kids like me, I decided to get out of my comfort zone and I definitely did NOT regret it. During the end of a retreat, at the end of July, I had a heartfelt moment with all of the families, and the amount of comfort and love that I had been gifted was definitely a moment to remember. So long story short, going to a Rett’s Roost retreat was honestly one of the greatest moments I’ve ever experienced in my cancer journey.”

Maddie’s mom Princess had an equally positive experience, “At the end of the retreat, you’re asked to say something you are thankful for. I was thankful for being able to find a glimpse of my true self again. To know, even though my kid has pancreatic cancer there are other moms out there that will forever have my back and understand my struggle. Yes, everyday we beat the odds, but that takes a toll on you. Of course I cried like a baby when I spoke. Madison ran up to me and hugged me. She said, “I’m here for you mom. I’ve never seen you cry like that.” I said, “you aren’t suppose to.” She said, “but then I would know you are human.

“Crying didn’t help me, but I think it helped her see something new in me. But gaining a new support system definitely helped me… Having a child diagnosed with cancer changes you, you lose who you are. Regardless of what anyone says, part of you dies in that moment. But somehow if you meet the right person or people; they can help bring some life back into you. Put a little sparkle back in your eye. Something about a mother’s tears gives you strength. Something about a mother actually understanding and not just giving you the “oh I’ll pray for you” phrase but actually listening and giving a hug that only a mother that’s been in my shoes could give, fixed me, just enough to be able to keep going.”

The Kaiser Family

  1. When were your children diagnosed with cancer? What type of cancer diagnosis were they given? How did their treatment progress?

When Zachary was turning two he had a routine blood check at his 2nd-year pediatric appointment. That test came back abnormal, so they had us bring him to a local lab for another check.  We were more annoyed than concerned at this point, as we had experienced low counts from the pediatrician’s office previously. When the doctor personally called us back the next day saying we needed to bring him to Children’s right away for additional tests, that’s when we began to wonder what was going on.

That day they found Zach’s hemoglobin was a 6 (half of the normal value) and his platelets and white cells were low as well. They admitted him, gave him his first of many transfusions, and scheduled his first of many bone marrow biopsies.

The following day they said that preliminary results showed blast cells that indicated leukemia (ALL). Over the weekend we met the team of doctors that were to follow Zach’s case for the next three years of treatment. We asked all the questions we could think of, signed dozens of papers authorizing treatment, etc.

Monday morning Zachary was to have a port put in, a lumbar puncture, and his first dose of chemo. The doctor walked in and said “Stop!  He doesn’t have leukemia. Now, it is always a good thing when your child doesn’t have leukemia, but the bad thing is it’s going to get complicated from a diagnosis standpoint.”  Truer words have never been spoken.

Over the course of the next fourteen months Zachary had at least six bone marrow biopsies, dozens of transfusions and lab draws, and his case was studied by three different Children’s hospitals.

Candice was 9 months pregnant during Zach’s first admission (the false ALL diagnosis) and they recommended banking the cord blood in case it could be used for a transplant in the future.  We did and were disappointed to learn that his younger brother, Gabriel, was not an HLA match, so that wasn’t an option.  The rest of the family was checked as well, but none of us were HLA matches for him, so they started the search for unrelated donors.  It wasn’t clear yet whether he would need a bone marrow transplant or not but based on the range of diseases they were looking at, it was a possibility they wanted to be ready if/when he needed a donor.

When Gabriel was about ten months old he was very cranky one weekend and we took him to the urgent care thinking he might have an ear infection.  They couldn’t find anything wrong, but a nurse made the comment that he looked very pale, which shot up red flags for us based on everything we had been going through with Zach for the past year.  The pediatrician agreed to do a CBC lab draw and when the levels were low recommended that the same team at Children’s take a look at Gabriel as well as Zach’s next appointment.

Our primary doctor walked in that day and said, “The odds that two of your boys have the same thing are astronomical, but we agree something looks fishy, so we’ll take a look.”

After additional labs and a bone marrow biopsy revealed that both Gabriel and Zach had the same characteristics in their marrow, the doctors settled on a diagnosis of Idiopathic Myelofibrosis of Childhood.  Myelofibrosis is more commonly seen in elderly patients but is exceedingly rare in children. Our two boys are 2 of 50 known cases worldwide.

So, it turns out that Gabriel being a different HLA type than Zach was really a blessing in disguise, because if they had been a match the team might have recommended a transplant right away while unknowingly replacing defective marrow with defective marrow…

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

After such a long and drawn out diagnostic phase, there was a small element of relief that there was finally a plan forward, but of course, it was a plan that none of us wanted. We had been hoping for a year that a bone marrow transplant wouldn’t be necessary.  Come to find out that not only was it necessary, but two of our children would be undergoing the treatment was overwhelming and numbing.

The doctors refused to share treatment outcome data with us, stating that the little info they had was old and would likely look worse than reality with medical advancements.  After continued pressure, our doctor finally said, “They are probably a little bit better off having the treatment than not.”  So essentially, we were looking at a 50% success rate for each boy’s treatment.

Due to the rarity of the disease and the severity of the treatment we asked around to find the most knowledgeable team of doctors for the treatment.  Hands down the answer were Boston Children’s.

It is always disruptive to the entire family when a child is diagnosed with cancer.  In our case, we added a relocation from Columbus, OH to Boston in addition to learning that we had two boys needing treatment instead of one and that the treatment was risky and invasive.  The boys were officially diagnosed in September of 2014, we met with the doctors in Boston in October, then packed up our house and relocated in February of 2015.

It’s hard to overstate the disruption to our family life.  Everything changed for all of us.

  1. What are some of the things that helped you get through the initial months of diagnosis and treatment?

We had a somewhat active group of friends and family following the boys’ journey on social media and they showed their support by wearing the boys’ care shirt on each of their transplant days.  Financially, we were fortunate to have a “Critical Care” insurance plan that paid out when the boys’ treatments began.  Those payments plus donations from our church back in OH and assistance from Dana Farber are what allowed us to continue living in MA for the first year.

  1. What are some of your children’s favorite toys, heroes, sources of comfort & joy?

Gabriel really latched onto a small stuffed leopard which he named “Kitty”.  He has only spent one night away from it in the three years since treatment, and that is because it was accidentally left at a store.  Zachary didn’t latch onto anyone specific toy but enjoys games and things that allow him to build (legos, blocks, etc.)

Both boys really wanted our company and physical contact most during their treatments.  We often found ourselves in their beds during hospital stays because they didn’t want us sleeping across the room.

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

We love being around other families that have had (and still have) similar struggles. In so many ways we feel like we live in a world where other people just don’t understand what we’re going through.  Even most people that ask about the boys don’t really listen to the answer, they just want to check the box that they were polite and asked.  Meeting and spending time with others who can relate feels like home to us, and the Rett’s Roost retreat was one way of connecting with others in that way.

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

Three things actually: It’s way more common than you’d think, research for it is terribly underfunded, and it affects the entire family, not just the patient.

The Neal Family

We are a family of six. Jason and I (Shawnalee) have been married for 9 years and are the parents of 4 wonderful kids. Jordan (17), Cameron whom would be 15, Jason Jr (7), and Tiara (4). In april of 2010 our lives forever changed. Cameron was diagnosed with Anaplastic Ependymoma. Cameron was such a happy, vibrant and strong kid. There was no way he couldn’t beat brain cancer…. right? Cameron fought for 5 years, fighting through 5 brain surgeries, two 6 week stays for radiation, every chemo known to man, and approved and trial meds. In November 2014 his doctors gave us the worst news any child or parent could ever receive.

There was no more treatment. No other options. They told us our precious baby boy only had 3 to 6 months to live. They was wrong! Our big man fought almost another year. Cameron gained his Angel wings on his baby sister’s 4th birthday (9/14/15). He was comforted in our home by us and his oldest brother Jordan. This day changed our lives forever.

Since Cameron passed we don’t talk to people. It seems like no one understands. We go to work and come straight home to snuggle with our babies. Even our oldest son. He goes to school, lacrosse and work. It feels like we haven’t had any time to process Cameron’s loss. Tiara always has questions though. She greatly misses her Cammy Bear! “Mommy I miss Cammy,” “Why does Cammy have to be dead mom?” “If we go visit him….. will he really be there? I just wanna hug and kiss him mommy!” These are the daily questions of a 4 year old. How do you answer some of these? Jason Jr has completely disconnected. He never talks about Cam at all. If he hears Tiara crying he simply and quietly tells her, “I miss Cammy too sissy.”

This has been so hard for our family! We want to attend this retreat in hopes of meeting people who really understand what we go through as well to gain coping skills.

Thank you for taking your time to get to know our family a little.

Jason & Shawnalee Neal