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The Bottari Family

When was Seth diagnosed with cancer?

Seth was preliminary diagnosed at 5 months in December of 2016, but his diagnosis of AT/RT (Atypical teratoid rhabdoid tumor of the brain) was not confirmed until mid January 2017.  Seeing the dates now does not seem like a long time but it felt like an eternity in the moment.

How did his treatment progress?

Seth’s treatment was slow to start due to the amount of time it took to get a definitive diagnosis.  We spent 6 weeks from the time they told us he most likely has this really terrible and aggressive cancer to when we actually received confirmation and his treatment followed the same path.  If there was a bump in the road Seth hit it!  Beginning with the wrong type of central line being placed, to fevers, RSV, and other bumps along the way Seth didn’t begin treatment until February 3, 2017.

His type of treatment was aggressive and they told us it would be difficult and Seth would be in-patient for weeks on end.  He did defy all odds and made his way home pretty regularly but we also spent a fair share of time in the hospital. Seth was a trooper through it all and for the majority of the time had a smile on his face.

In early June 2017 we got amazing news that the treatment was working and the tumors in Seth’s brain had shrunk.  They were so elated with his reaction to treatment that they were going to begin preparing Seth for the stem cell transplant phase of treatment.

As parents we were so excited.  Our son was going to make it, and although the stem cell transplant process is hard and grueling on everyone involved it was going to keep Seth with us so we were ready to move full steam ahead.

But Seth’s cancer had different plans, during the testing needed to move toward stem cell transplant a large tumor was found on Seth’s right kidney; and it had grown during the time that Seth was receiving chemotherapy.  Why his brain responded and his kidney didn’t is something we may never know.

From the time we found out about this as parents we wanted to enjoy our time together as a family.  Keeping Seth as comfortable as possible for as long as we could have him with us.  However, the option to remove Seth’s right kidney was posed to us as potentially giving him another possible 18 months.  How could we possibly refuse that opportunity?  They weren’t even sure this was AT/RT so we went for it.  Seth’s right kidney was removed and he recovered nicely.

It was 2 weeks later that we were doing additional testing to determine next steps for Seth when an MRI revealed that the tumor had grown back in the same place to half the size it was previously, he had spots all over his lungs that were too numerous to count and a concerning spot on one of his vertebrae.

Devastating doesn’t even begin to describe how we felt.  We had his kidney removed to give him, give us, and our family more time and now we’re right back in the same devastating position.

At this time we took Seth home for as long as we could but ultimately decided to return to the hospital when things got worse because we didn’t want him to suffer.  We had a wonderful few days as a family having sleepovers at the hospital and just being together as a family of four.  Seth ultimately took his last breath on August 30th in my arms.

What did that devastating news feel like for your family?

Through the whole journey we were hit so many times with devastating news.  The initial mention of AT/RT – how can our perfectly beautiful and healthy baby boy have this terrible disease with no sign of anything.  How will we do this financially, emotionally, physically?  How will this effect Sadie?  Could she have it?  Do we have it?  So many things spiraled through our minds.

Then realizing that you couldn’t save your son.  A terrible feeling that no parent should ever have to experience.

And lastly having your infant son take his last breathe in your arms.  Something I would never wish on anyone but also something I wouldn’t change for a second. I was there to bring him into this world and I was there to ease and comfort him on his way out.

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

Our friends, family, and employers really rallied around us from the start and haven’t stopped.  In the beginning it was just spending time together, meal drop offs, and eventually it grew to financial support, ensuring that Sadie was well cared for when either of us couldn’t be with her, dropping everything at an instant when we had to take Seth to an appointment or the ER.

What were some of your child’s favorite things to do? Did he have super heroes, sources of comfort & joy?

Seth was so young through all of this that he couldn’t tell us what he wanted to do but he always wanted to be held and snuggled, he loved his swing and rocker, his eyes lit up when Sadie came to visit or when they could play together, he loved throwing his toys on the ground and making us pick them up over and over again, he listened to music with my husband, and his favorite toy was the syringe for his G tube.

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

By far, it is the lasting friendships formed and finally having people who understood what we were going through. People who had those same hard questions and terrible thoughts running through their minds.

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

Let’s be honest it sucks!!!  You never think you’re going to be the one effected by this terrible disease until you are and it’s heartbreaking and life altering.  But despite how awful all of it is, the diagnosis, the treatment, the sicknesses, the unbearable grief, there were a lot of good times and memories too.  The circumstances weren’t the best but we enjoyed time as a family as often as we could and made a second family with the staff on the 9N floor at Boston Children’s Hospital.  We really got to see how generous and loving people could truly be through what will hopefully be the worst experience of our lives that we carry with us each and every day.

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 Ross Family

What was your experience with cancer like?

Our experience with cancer was very brief. On January 4, 2017, after a usual afternoon nap, Kennedy just wasn’t her usual self. After a few alarming signs that evening, I took her to our local ER where we were later airlifted to Boston after finding a large mass in her brain. Kennedy underwent brain surgery the next morning, half of her head shaved, where long, curly raven black curls once bounced. Kennedy suffered a stroke during surgery and never regained consciousness. On January 18, 2017, we found out we were expecting a baby boy in May, and just a few hours later, Kennedy was diagnosed with an embryonal tumor with multilayered rosettes (etmr). Kennedy Sutton Ross died the next day, January 19, 2017, at 2.5 years old

How does your family remember your child?

From the day that Kennedy underwent brain surgery, her symbol became a sunflower. The sunflower symbol became bigger than ourselves. It’s comforting to know that others think of our daughter when they see sunflowers. We talk about Kennedy and mention her name daily. Sharing her life story and adventures to the world to illustrate how truly delicate life is has helped tremendously.

How has Retts Roost helped you in your journey through grief?

Rett’s Roost has opened the door to a lifelong community of supports. Fellow families that have been through the unimaginable who empathize with your pain when your words don’t exist.  They have done an amazing job in their own keeping Kennedy’s name alive. Healing is a journey that will last a lifetime, just like the connections and friendships I’ve made through such a caring organization.

The Light Family

Our story begins in early September 2014. Our 3 year old daughter Alison spent the spring/summer of 2014 battling constipation.  The very regular issue for a 3 year old took a turn for the worse when we were visiting our family in Virginia for Labor Day weekend.  Ali was dealing with quite a bit of pain in her abdomen and bottom area.  By the end of our family visit, however, her stomach had become distended and she was not eating or going to the bathroom.  When we returned home September 2nd we knew that we needed to take her directly to her pediatrician. After another examination, it was recommended we get a “professional” enema.  Before leaving the office, we pointed out some swelling Ali had around her tailbone.  At that point it was quickly recommended that we go to Boston Children’s Hospital Emergency Department for further testing on the chronic constipation. That day, became one of the longest days of our lives. Quickly, doctors in the emergency department found a very large tumor mass in Ali’s  pelvic region.  After two days of tests and scans, Ali was diagnosed with Stage 4 Germ Cell Yolk Sac Tumors. The tumor was not just in her pelvic region, but had spread to her liver, lungs and lymph nodes as well.  We were getting answers to why Alison had such a miserable summer, never feeling “great”.  But the news was devastating.  This was happening to our family.  “Cancer” was happening to us!

After being assigned a full oncology team, we were able to discuss treatment. The good news was that chemotherapy was supposed to be very effective against this type of cancer and the plan was to wipe it out completely.  We got started right away on four, 21 one day cycles of chemo which did prove to be very effective. Every cycle shrunk her tumor and seemed to be working on the rest of the tumor burden in her body as well. Unfortunately, the tumor was so big it would take more than chemotherapy to get rid of it. Ali was next scheduled for surgery to remove  as much of the tumor as possible.  Once again, the 6 hour surgery was successful. Although Ali’s surgeon couldn’t remove every piece of the tumor, he was able to get the majority of it and leave the best of the nerves – She would still walk and have function of her bowel and bladder.  The seemingly successful surgery along with the cycles of chemotherapy allowed the doctors to be confident that the cancer was gone.  She would now be under surveillance, which meant we would have monthly clinic visits to check her tumor marker via labs and then every 3 months we would return for CT Scans and MRI’s.

Of course, we were ecstatic about this news. Unfortunately, it was short-lived. The surgery was done in December and by February her tumor marker showed signs of the tumor increasing in size. We were looking at a relapse. It was confirmed in late February that the tumor was back, and that Ali would need to start treatment again – a stronger more potent chemo.  Our team decided that she would go through four more cycles of chemotherapy. Once that was complete we would need to supplement the chemo treatment with local control, which meant one of three things would have to occur – another surgery, radiation or a stem cell transplant.  The second round of chemo proved to be as effective as the first with her markers constantly going down. The doctors opted not to do any local control, but to keep her tumor marker under close watch – at the first sign of her tumor marker rising they would move fast forward with the stem cell transplant.

I don’t know how to put into words to show how strong, resilient and upbeat Ali was through her entire journey, but her strength gave our whole family strength. I think that she is a changed girl. She went from being in pain for months to almost immediately feeling relief the day the chemo started and the having a huge tumor removed from her body. I think she was just happy to be pain-free and then rolled with the punches after that.  She is 4 now, and a brand new girl.  Ali’s last round of chemo was in May of this year. Her scans have been clean and her tumor marker has stayed in a safe zone since!  Of course, she will have to go through these scans and blood work every month for a long time to come, but we are thankful for every minute that our family gets to spend together. Her doctors were amazing, our community support is beyond belief, and our family has been by our side. We praise God for every moment we have, He walked with us and filled us up every day with the strength to get us here.

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.

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