Submitted by Daniel H. And Marian. H. (Texas)

Perspective: Parents of children with cancer

Author’s Note:

The story you are about to read was originally Published in 2018. Although I didn’t know it at the time, the process of putting these thoughts on paper proved to be a significant milestone on the path to launching Peaces of Me the following Summer.

Its amazing how the challenges of today can shape the opportunities of tomorrow.

Before we dive in, we should warn you that some of this content is difficult to read. While we didn’t go out of our way to be graphic, it is fair to say that we didn’t sugarcoat things, either.we simply couldn’t provide a realistic glimpse into these moments while skipping over the less pleasant parts.

**Start of Original Posts**

Day 1 about Heather posted by Daniel:

A while back, Marian & I decided that we would celebrate pediatric cancer awareness month this year by sharing Heather and Dominick’s stories. Over the next month, we plan to tell the tale in daily installments. So, let’s do this!

Heather – part one:

Given Marian’s history, we knew that any child of ours had a 50% chance of developing retinoblastoma.  Furthermore, we understood that the strain of Rb involved was particularly aggressive. As such, we attempted to coordinate care during the last few weeks of pregnancy, in hopes that it would streamline our efforts. Instead of supporting our efforts, the hospital accused us of being paranoid.

Citing this accusation, and the misguided notion that blind people can’t be successful parents, the hospital referred us to child protection before Heather was discharged. Fortunately, Marian and her mom were able to track down the best retinal specialist in Denver, and we were able to set up an emergency appointment. Fortunately, we were blessed to have a CPS worker who understood the absurdity of the situation. She elected to become an ally. On April 22nd, 2008, we took our 5-day old baby in for her first eye exam. The initial exam looked ok, but the ophthalmologist wanted to run one more test before sending us home. When he began the ocular ultrasound, he was optimistic that we could wait another month before scheduling the first eye exam under anesthesia. Then he saw the spot. He didn’t say anything at first. He calmly focused on the problem area and asked his assistant to make an opening for the following Monday.

He didn’t want to call it a tumor. Just a 1 mm spot in the center of her left retina. Hey didn’t need to say anymore, we all knew.

Day 2 about Dominic Posted by Marian:

Dan and I have decided to share parts of Heather and Dominick’s cancer stories for childhood cancer awareness month this year. She is 10 years from diagnosis, and he is five years tumor free. When I learned I was pregnant in September 2011, my first reaction was excitement, but that soon turned to wondering if my baby would carry the mutation that causes retinoblastoma. After months of research, we concluded that it was best to collect Dominick’s cord blood at birth and send it to a lab in Philadelphia to be analyzed for the gene. Dominic was born on Thursday morning in Seattle, and his blood was being processed in the lab in Philadelphia before the close of business on Friday. Meanwhile, I called the eye doctor to make an appointment for my new born. I was informed that they had a waiting list of four months. I told them that they could put my newborn in the 2:00 slot on Tuesday because it was currently being held by his older brother. Somehow they decided they could see both boys at once. When we went to the eye doctor he gave Dominick a clear exam. I wanted to believe him, but something inside me just knew he was wrong. We took our baby home, did our best to enjoy him, and waited for the genetic test results.

Day 3 about Heather Posted by Daniel:

In commemoration of pediatric cancer awareness month, Marian & I are taking turns telling Heather and Dominick’s cancer stories.

Heather, part 2: April 2008

Through some creative collaboration, we were able to arrange for Heather’s first MRI of her brain and eye sockets to be done in conjunction with her initial eye exam under anesthesia (EUA). This meant that she would be under anesthesia longer, but at least they would only be putting her to sleep once. The entire procedure lasted around 2 hours.

When the ophthalmologist entered the waiting room, he confirmed what we suspected. That 1mm spot was indeed a cancerous tumor, and there would certainly be more before this was over. While she was in surgery, he used a laser to cut off blood supply to the tumor. He assumed this would kill it, but we wouldn’t know for sure until the next EUA.

Due to her forgetting how to breathe and an extremely low heart rate while in surgery, Heather spent the night in NICU. We faced some of the same scrutiny in the children’s hospital as we had during Heather’s first days. We were focused on treatment plans and they were fixated on our blindness. In fact, we later found out that the medical record cited our blindness as the reason for her admission that night.

Throughout the remainder of April, we tried to establish some semblance of normalcy. Marian focused on being a new mom, and I split duties as a new dad and an overnight stocker at Walmart. Sleep was a rare commodity.

On April 30th, Marian’s mom returned to Idaho. She reminded me today how frightened she was at that moment. Not because she couldn’t hold her own, but because she feared the authorities would use this opportunity to swoop in and take Heather. Given the statements that had been made to us, this fear was justified. Had this happened, Heather’s story would be quite different.

One of the recurring themes that you will notice throughout the month is that life-and all the complexities therein-continue throughout cancer treatment. Families who contend with this still must deal with the other responsibilities and obligations that they had before their world turned on its head. rather, we just have to fit cancer into an already complicated life. Things like work, bills, and other aspects of life don’t go away when the diagnosis comes. Instead, we are expected to fit cancer into our already hectic lives.

Day 4 about Dominic Posted by Marian:

As Dan and I continue to share the children’s cancer stories this month, we want to draw special attention to the fact that even though Erik does not have cancer it has definitely affected his life in huge ways. While he is always woven into Heather and Dominick’s stories, he has a story all his own to share. A story that is often overlooked because of his brother and sister’s stories. We will share Erik’s story later, but for now we go back to when Dominick was 12 days old.

We had been told that the genetic test results should take approximately two weeks. Day 12, and we were in the hospital anyway. We thought we’d drop by oncology to see if they had heard anything or wanted to schedule an appointment to discuss the results. The doctor was out and they referred me to call someone in a different department. As I stood there on hold waiting for the lady to try tracking down some paperwork, the ophthalmologist walked by. Erik smiled, waved, and told him hi. Something that he had never done in his 23 months of life. Honestly, my first reaction was anger and disappointment. Of all the people passing by why did my baby have to pick that one to be the first to smile, wave, and say hi to? All I could see was cold hearted surgeon who was already going against the recommended protocol for treating my son, yet his brother saw a human being worthy of a friendly greeting. It was only with time and some gentle prodding from loved ones that I came to realize Dominick’s cancer could be just as dangerous to my heart as it was to his eyes if I allowed it to be.

Day 5 about Heather Posted by Daniel:

The following is the next chapter in Heather’s cancer story.

May/June 2008:

A few days after Marian‘s mom went home, the CPS worker stopped by again. She brought diapers and encouraged our efforts, but the most important element of her visit was the respect with which she treated us. Eventually, she would file a complaint on our behalf highlighting the injustice of the hospital’s actions.

Heather’s May EUA was disappointing. Despite the treatment that she received in April, the tumor had grown. The ophthalmologist treated it with the laser a 2nd time in hopes that this attempt would complete the job.

At some point during this timeframe, I requested that my nights off be split. I reasoned that if I didn’t work Sunday & Wednesday nights, I could routinely complete my 40 hours a week and continue to make all her appointments.

In June, her EUA was much more concerning. Two new tumors were present, one in each eye. Worse yet, the original one was still growing. Again, the ophthalmologist laserdisc what he could, but it was becoming clear that we were approaching a crisis.

As the Summer wore on, cancer cemented itself as the predominant issue in our lives. We knew that Heather’s vision was now in jeopardy, despite our best efforts. We were keenly aware that if the most recent treatment had failed, we would be facing a menu of equally undesirable options.

Research was becoming a fixture in my life. I needed to learn everything I could. It was the only way I felt any sense of control over this. Discussions that most parents can’t imagine having, became common place. We needed to be prepared to fight for her life. We needed to plan for the worst-case scenario.

The social isolation was getting worse. People wanted to be supportive, but this brand of reality was overwhelming to them. The chasm between what we could discuss among ourselves and what we could share with the outside world was widening. The enormity of the task at hand was increasing, while the availability of outlets for this energy was decreasing.

Day 6 about Dominic Posted by Daniel:

Since Marian & the kids moved into their new apartment today, I am filling in for the 2nd installment of Dominick’s story.

Thursday, June 14, 2012:

Marian’s phone rang, and she disappeared into the bedroom. She was clearly upset. The oncologist from Seattle Children’s was on the other line. In a matter-of-fact voice, he simply informed her that the genetic test was positive, and that we should await further instructions from ophthalmology.

Given Marian & Heather’s history, we knew that time was of the essence. Despite the change in status, ophthalmology remained unwilling to schedule a follow-up within a reasonable timeframe. In order to circumvent this roadblock, we devised an end-around in which we facilitated an emergency referral from his pediatrician. With that plot, Dominick was seen that afternoon.

Unfortunately, this appointment unraveled quickly. The ophthalmologist performed a cursory exam, proclaimed that Dominick was “home free”, and instructed us to return in 6 months. When Marian’s mom held the genetic results directly in front of his face and reminded him of the family history, he suggested 3 months instead. For context, 4 weeks would have met the standard of care.

At this point, we demanded a referral.

Friday, June 15:

We returned to Seattle Children’s for the express purpose of filing a formal complaint. We could never trust this doctor again, but we hoped that our efforts could spare other families from his incompetence. While we were carrying out this process, I called the office of one of the world’s leading specialists, who is based out of Philadelphia. Upon hearing our story, they agreed to see him the following Monday morning.

None of the medical transportation charities were able to open a case & provide assistance with such short notice. Thus, we had no idea how we were going to get to/from Philadelphia.

Through a series of discussions, I was able to arrange a deal with our bishop that would allow us to get there. Beyond that, we would mostly be on our own. We then arranged for Marian’s mom to take the older 2 back to Idaho the following morning. On Saturday night, the 3 of us boarded a red-eye headed East.

Before I wrap up for tonight, I want to make two quick points:

First, because we removed Dominick from this life-threatening situation, we never had grounds for a lawsuit. That said, what went on in Seattle was disgraceful.

Second, we were financially sound when Dominick was born. Travel and other expenses not typically associated with medical care changed that in a hurry. However, we were exceptionally lucky, Medicaid covered almost all of the medical bills, so we were definitely blessed. Studies show that a significant percentage of families who deal with pediatric cancer ultimately file for bankruptcy. This didn’t happen to us, but we came much too close for my liking.

Day Seven about Heather Posted by Daniel:

It’s time for today’s chapter of Heather’s cancer story.

July 16-23, 2008:

EUAs typically last about an hour. Marian & I had just settled into the waiting room when the ophthalmologist appeared. It had only been 15 minutes.

We’re both thinking too ourselves, “Crap! How bad is it?”

The 3rd time the ophthalmologist lasered the primary tumor in the left eye, he had “scorched” it. Afterward, he informed us that if that treatment was unsuccessful, we would have to change course.

Indeed, the tumor had exploded in size over the last month. So much so that he didn’t even try to treat it this time. There was no point.

We were scheduled to see her oncologist within the next week. Those few days seemed like an eternity. Up until this point, I used work as an escape, but I couldn’t concentrate on my job anymore. My thoughts were flooded with questions about treatment options.

Marian and I agreed that radiation of any kind was a last resort. Although Philadelphia offered an innovative treatment commonly referred to as radioactive plaque therapy that often obviates the need for chemo, the risks were too great.

This left chemo as the only viable option. Memorial Sloan-Kettering had brought a treatment called inter-arterial chemo to the US, and early results were promising. Nevertheless, IAC also carried significant risks. Thus, we settled on systemic chemo.

The traditional chemo roadmap for retinoblastoma calls for 6 monthly cycles of 3 drugs. For the last couple of decades, Vincristine, Carboplatin, and Etopiside have been the standard agents used. Vincristine is plant-based, but it is so powerful that it burns through tissue if improperly administered. Carboplatin is platinum-based and carries substantial risk of late-onset side-effects.

Etopiside, the 3rd chemical that is typically used, is simply awful. Prior to our appointment with the oncologist, I found research from Philadelphia that showed a link between Etopiside and a fatal secondary cancer called AML. Furthermore, this research clearly demonstrated that Etopiside made no significant contribution to the overall efficacy of the cocktail. In other words, it’s useless.

The oncologist was a bit unnerved when we informed her that we would only consent to the use of 2 chemo agents. Nevertheless, to her credit, she heard us out. We were able to make a compromise in which Etopiside would be stricken from the roadmap. However, if treatment with only 2 agents began to fail, it would be included thereafter.

Note 1: despite a dearth of evidence supporting the efficacy of including Etopiside in the cocktail, VCE remains the standard of care nationwide.

Note 2: the chemo agents mentioned have been in use for decades. Sadly, research into treatments for childhood cancers remains woefully underfunded.

Note 3: I cannot emphasize enough the role that sound/thorough research and open communication with Heather’s doctors played in her treatment. The only reason our compromise was safe is because we knew what we were talking about, and we maintained a deep and respectful dialogue with oncology.

Day 8 about Dominic Posted by Marian:

After landing in Philadelphia, we left the airport in a cab that had bulletproof glass between us and the driver for the driver’s protection. Neither Dan or I had ever seen such a thing in our travels, and I am 100% certain that I was more afraid of the driver than he was of me. The hotel was nice with friendly staff and good food in the restaurant. Though we had been up for nearly 48 hours, straight sleeping was a challenge with the uncertainties of the next day’s appointment.

When we arrived at the hospital the next morning, we were quickly taken back where we met with one of the residents who took down not only Dominic‘s history, but mine and Heather’s as well. It wasn’t too much longer before the doctor and her team of about 10 helpers came in. Some were holding him down, the doctor was looking and giving very detailed descriptions to others who were notetaking and making diagrams of his eyes. Never before have I witnessed such a thorough eye exam. After the exam it was off to the ultrasound just to doublecheck. Fortunately, there were no tumors yet, but the doctor was just as displeased with the care we received in Seattle as we were. She made it clear to us, and clear to the original doctor that had seen Dominick in Seattle that she would be taking over his case. We left with a plan to come back in 6 to 8 weeks.

After leaving the hospital we walked down the street in search of Wendy’s. It didn’t take us long to figure out we had gone the wrong way and turn around. We soon found the Wendy’s, and though it was probably only around 20 minutes of walking it seemed like an eternity to me because of the neighborhood. As we ate our lunch, we tried to figure out where to stay as we waited to hear back from corporate angels to see if they could help us get home. The call soon came, and they had found us a flight home on Wednesday. We checked into a different hotel and crashed.

Later that night I discovered that Dominick had spiked a low-grade fever. We had considered seeing more of Philadelphia on Tuesday, but with Dominick‘s fever and us being so exhausted we took the day to rest. Corporate angels had arranged transportation from the hotel to the airport on Wednesday morning, and we all took our first limo ride. It was only us, the pilot, and one other guy on the corporate jet that day. Both treated us wonderfully and thought Dominick was adorable.

Day 9 about Heather Posted by Daniel:

July 24, 2008: Colorado

“This is a children’s hospital! What do you mean you don’t have a port small enough for my baby?…what are we supposed to do?!”

We were exhausted, and totally not in the mood. Marian & Heather had to find someone from church who was willing to drive the to the hospital at 5 a.m. Medicaid transportation declined the trip due to insufficient notice. Yeah, that’s what happens when cancer throws you a curveball, and you end up scheduling a surgery with less than 48 hours’ notice.

For my part, I scored a ride after work up to the park & ride and caught a bus to the hospital.

The surgeon informed us that he would be inserting a Broviac line into her SVC, the primary vessel leading into her heart. Unlike a port that is accessed through the skin, a Broviac has an external access point that MUST remain sterile. Furthermore, since this device led directly into her heart, any disturbance of the placement would be an emergency. That said, the surgeon assured us that there was no way an infant could take it out.

The surgery went well. Since we would be staying overnight anyway, we elected to do the first chemo infusion. The nurse had Marian release the clamp herself. To this day, she’ll tell you it’s the hardest thing she’s ever done.

During that hospital stay, Marian proved that she could successfully care for the Broviac. Only a few months prior, nurses in Denver were openly questioning her ability to change a diaper. Yet, there she was, safely working in a sterile field. She was a rockstar.

For my part, my memories of the period are covered with a later of haze. My department at work had been running a promotion much of the Summer, and I was responsible for maintaining the increased flow of inventory. My nights off had been split for a while by that point, and I was generally operating on 4-5 hours of sleep per day.

To her credit, Marian got after the staff anytime someone was snarky about me dozing off. She knew it took everything I had just to be there, but I couldn’t go home and sleep. That’s my little girl getting this poison pumped into her.

We were all trying to be superhuman.

Day 10 about Dominic Posted by Marian:

While there were definitely feelings of relief after having Dominick evaluated by the specialist in Philadelphia, going home to an apartment without Heather and Erik left a deafening silence that constantly reminded us of the seriousness of the situation. We immediately got to work researching ways to get Dominick back to Philadelphia and trying to schedule that appointment. Unfortunately, when we tried to schedule the appointment, we were informed that the doctor was going to be gone during the time we needed and was booked for weeks after she returned. Between the Dr’s schedule and our financial difficulties, we eventually concluded that our safest bet would be to take Dominick back to the doctor in Denver who treated Heather. We called and were able to make an appointment for mid-July. Thankfully, Dan had the foresight to contact that office that day we received Dominick‘s genetic test results. They were somewhat expecting the possibility of us needing emergency appointments and went over and above to make sure Dominic’s needs were met.

On the afternoon of July 4^th, We decided we had enough of being away from our older two children, and that We did not want to miss Erik’s second birthday. We quickly threw things in bags and were on a Greyhound headed for Idaho that night.

After brief introductions to the rest of the family who hadn’t met Dominick yet, we set to work figuring out how to get to Denver. We concluded that it would be most cost-effective if my mother could drive us, but she did not have a vehicle at the time that would make that kind of drive. So, we decided it was time to buy a vehicle of our own. With A little bit of help, we were able to find a 1997 Chevy suburban in good condition. Though I felt quite a bit frustrated with Idaho’s law that does not allow a car lot to sell a car to an individual without a valid driver’s license, that was not the time to pick a fight. I swallowed my pride and allowed a sighted person to have his name along with mine on the title of that vehicle. I bought it with my own money, and he helped me drive it off the lot.

A few days later we sent Dan back to Washington to focus on some classes he was finishing up, and my mother the kids and I headed to Denver. We ended up being in Denver around a week. With sometimes having days between appointments, we were able to visit the zoo, the aquarium, and several parks. Dominick was still tumor free, and we scheduled to come back to Denver in mid-August.

Day 11 about Heather posted by Daniel:

August 2008:

“The tumors are dead? Like, completely dead?”

This was the first EUA after chemo, and the news was almost too good to be true. The formal term for systemic chemo in bilateral Rb cases is “chemoreduction”. Typically, the desired outcome is that the drugs will shrink the tumors enough that they can be locally treated again.

This was WAY beyond that. This was inexplicable, especially given our refusal to use one of the standard agents. This was the first good news we’d heard in 4 months.

Monthly EUAs & chemo would continue as planned. Quarterly MRIs would still be performed in order to screen for tumors in the brain. This war was a far cry from being over, and any number of things could still go wrong. Nevertheless, at least for a moment. We could celebrate.

Day 12 about Dominic posted by Marian:

With Seattle Children’s refusing to treat Dominick for anything less than a life-threatening emergency, and us having to travel to Denver for treatment, we could not afford to stay in our apartment in Washington. Even before tumors showed up I felt that cancer was robbing us of our home and the life of independence we had worked so hard for. I Bitterly began to pack as Dan finished up his school and had a surgery of his own that had needed done for years.

After a late baby shower/going away party, we loaded the truck, and said goodbye to all our friends promising to keep them updated. We did not have a place rented in Idaho, so Mary Hodges volunteered her garage for us to offload all our stuff into. We offloaded the truck then headed for the hills with my family to pick huckleberries. After a couple of weeks trying to pretend we were just a normal family having a normal summer vacation, it was time to head back to Denver.

As Dominick had his exam under anesthesia, I sat in the waiting room watching the time. Just as I was starting to get nervous about how long it had been, the doctor came and found us. “Time to break out the champagne “he said. “We found two tumors today. One in each eye, and both about 0.5 mm.“ why celebrate this occasion? We had known that the tumors would come, and they had been found and treated before they had the opportunity to grow. The other good news was that with active tumors he qualified for assistance from programs that previously could not help us as he was classified as receiving cancer surveillance.

Day 13 about Heather posted by Daniel:

Today’s gold ribbon entry:

When I talk about children receiving chemo, what am I really describing. I’ve discussed some of the surface-level considerations in previous posts. Today we’re going to dive a bit deeper.

Hair loss: chemo is basically designed to attack every rapidly dividing cell in the body. As it happens, hair follicles and GI tract cells fall into that category. Thus, you have the traditional hair loss and nausea.

We knew it would happen, but there’s still a twinge of pain every time you place your hand on your child’s head where hair used to be. In addition, this is usually the only visible sign to the outside world of what is going on. Before long, it feels like a spotlight is on you.

Germs: setting up a quarantine area within your own home isn’t fun. It doesn’t matter how close you are to a friend or family member, their cold/flu could still kill your child. With Dominick, we had to take the added measure of isolating him from his siblings at times.

Since Marian did most of the day-to-day care, she would go for extended stretches without going anywhere except the hospital. No stores, no restaurants, and church was out of the question.

Fevers & bruising: the drugs accumulate in the body more with each cycle. You look down, and you see bruises the size of your hand. That’s how you know the blood counts are falling. If it gets bad enough, they’ll do a transfusion.

Any fever over 101.5 is an emergency. No sniffle is truly benign. The immune system is too weak.

Other physical effects: These drugs are known to cause a plethora of side effects. Some are early onset, while others take years to manifest. Broken bones, hearing loss, secondary cancers, developmental delays…just to name a few. They will need to be monitored for the rest of their lives.

Social/financial: families that go through suffer bankruptcy and divorce at staggering rates. In fact, studies have shown that survivors experience elevated poverty rates when the reach adulthood. Charitable funds are hard to come by, and they run out quickly. Furthermore, unless you can get the patient on Medicaid, insurance is a nightmare.

Eventually, the stress is too much for the outside world. People stop asking how things are and bringing it up can bring the interaction to an abrupt halt. Even after the smoke clears, it’s never the same. It’s a reality too far removed from the experience of most people.

That’s why we’re making these posts. Because too many families suffer in silence.

Helplessness: after everything you can do has been done, it still may not be enough. Until the dust settles, you live every day with the understanding that crisis may be around the corner. Things can go from calm to chaotic in an instant.

Day 14 about Dominic Posted by Daniel:

September 2012,

Seeking second opinions can be a tricky proposition. When we did it June, there was no other option. September was a bit more nuanced.

Our oncologist was citing a published study in an effort to push chemo. We knew that chemo was nearly certain at some point, and we agreed that preventing trilateral (brain involved) retinoblastoma was critical. Yet, the pieces just weren’t fitting.

Systemic chemo is somewhat controversial within the Rb community. One faction, led by Philadelphia, promotes systemic chemo as a way to prevent Trb. Of note, they also identify pineal (brain) tumors <15mm as being terminal.

New York dismisses the study and treats pineal tumors of larger sizes. Furthermore, New York largely favors inter arterial chemo.

The study in question indeed showed a drastic decrease in TRB when systemic chemo was administered. However, the control group also showed a lower insolence than anticipated. Essentially, there wasn’t sufficient evidence to justify taking the next step at this juncture.

Before we finalized our opinion, we attempted to gather more information. We contacted the most influential hospitals, not expecting much of a response.

Imagine our surprise when a handful of the leading Rb specialists in the world reached out to us personally. Through those conversations, our decision was cemented. More importantly, these specialists renewed our confidence in our vetting process.

As a side note, we unearthed evidence that the Boise Dr had mislead us regarding her own research methods. However, that’s not the point of this post.

How we access healthcare is a deeply personal decision. In my mind, trust and mutual respect are crucial to any doctor-patient relationship. If you have questions, ask them. If you have concerns, raise them. If you find research that presents a novel perspective, discuss it.

There are doctors that I literally trust with my children’s lives. That level of trust is not easily earned, nor should it be.

Day 15 about Heather posted by Daniel:

November 2008,

It was 7:00 on a Saturday evening. We had just returned home from a rare day out among the public, and I was getting ready for work.

Marian started to sense that something was amiss when Heather started acting unusually. Her temperature was 99 degrees at that point. Not great, but not critical either.

Within a couple of hours, she was at 103.4. I didn’t want to believe it. I came up with every excuse I could think of for why the thermometer had to be wrong.

Six weeks earlier, Marian & I had made the difficult choice to temporarily move back to Idaho. As part of that arrangement, mom had begun driving me to/from work.

As we were driving to Walmart. It became more obvious that the fever was for real. We headed straight to the hospital, and the next series of events unfolded like a nightmare come to life.

The hospital confirmed the temperature as 103.6 and immediately hypothesized that her central line was infected. They did a spinal tap to rule out brain involvement and ran blood cultures to identify the exact pathogens involved.

Thankfully, the initial spinal tap results were negative. However, we didn’t have time to wait on the blood work. She was critical, and the results would take 48 hours.

We were transferred to a hospital with a PICU, and Heather was admitted. We began treatment with powerful anti-biopics that we prayed would match the bacteria. The infection was in her blood. No margin for error.

By morning, the fever was starting to ease. The drugs were working, but she wasn’t out of the woods. We watched, we prayed, and we hoped that this would pass. I was in disbelief as to how quickly things had escalated. It’s the kind of experience that changes you forever.

Day 16 about Dominic posted by Marian:

November 2012

November 2 was Dominick‘s routine exam under anesthesia. When the doctor came out, he informed us that he had lasered the tumors just as he had the previous months, but that he was now growing concerned as Dominick was developing tumors closer to the center of his eye. If we continued to try managing the tumor with the laser Dominick would lose vision in that eye. That was the day we officially decided to start systemic chemo.

With the growth and placement of this tumor the doctor wanted to see him for another exam under anesthesia in two weeks. We scheduled his exam as well as a port placement for the 16th and took him home to wait out two of the longest weeks of the year.

My mother was growing increasingly concerned about driving through Wyoming blizzards, so we arranged our first Angel flight for that mid-November trip. Because of how far it was, Angel flight arranged the trip with two different volunteer pilots. The first pilot flew us from Idaho to Utah, and the second from Utah to Colorado. Our angels for the second part of that trip were a husband and wife who went way over and beyond to help us. They brought Dominick a baby blanket, and once we landed in Denver, they volunteered to drive us to the hotel.

The next morning, Dominick first had his eye exam and was then turned over to the general surgeon for his port placement while the eye doctor came to discuss his findings with us. Once again, the tumor was trying to grow, and he had lasered it. It was still tiny, and he proposed that we come back in a few weeks to begin chemo. I told him that if it was all the same to him I would just assume start chemo that day. He said “done “, and as he was sitting there, I watched him call up to the oncologist and inform him that we would be starting chemo that afternoon.

When we got up to oncology, the doctor wanted to go over the plans. He proposed that we use the standard three drug cocktail, and I told him that we were only going to use two. He said that he had spoken with the oncologist who treated Heather, and that she had warned him I would say that but told him she felt he should still suggest the three anyway. I told him that the tumors were small, and that Dominick‘s life was not in immediate danger. I agreed that if a cycle of the two was not effective, we would then consider adding the third drug. This satisfied him, and we did Dom’s chemo Mom’s way instead of the doctor’s way.

Day 17 about Heather posted by Daniel:

November 2008,

The oncologist walked into the NICU room and greeted us. She then proceeded to say, “I know this is awful timing, but I need to talk with you about extending Heather’s chemo.”

Seriously?! Her blood counts are in the toilet, the infection isn’t all the way gone, and we’re having this discussion now? Ok, so this paragraph is slightly dramatized, but you get the drift.

The general theory was that her tumors could come back at any time within the next couple of years. Completing 6 cycles instead of 4 reduced that risk. Furthermore, it minimized the danger of spontaneous brain involvement.

The 2nd growth had been removed due to the infection, and they were going to place a PIC line in her neck. This would be a conduit for the inevitable transfusion, and the 5 cycles of chemo that would occur in a week or so.

In Denver, we had a system wherein MRIs and EUAs occurred under the same anesthesia. We thought we had a similar arrangement in Boise, but they managed to put her out three times in the same day for these exams while she was still inpatient. Ugh!

Throughout this 5-day hospital stay, at least one (usually both) of us was always by her side. With everything that was going on, we never felt comfortable leaving her alone.

Walmart policy required a separate call-in for each day, even when the absence was continuous. During one of these calls, I explained in detail that my child was dealing with sepsis. The cold and indifferent response that I received in response made it clear that I wasn’t in Colorado anymore. On the bright side, reactions like that are part of the impetus for these posts.

Ultimately, the cultures confirmed that the antibiotic was a strong match for the 3 bacterial strands in her bloodstream. The MRI & EUA were clear. The transfusion had worked, and her counts were rising. We nearly lost her, but we didn’t.

We took our baby girl home, just in time for Thanksgiving.

Day 18 about Dominic posted by Marian:

Late November-December 2012

With Dominick starting chemo, my already isolated world became even more isolated. Going out in public was out of the question, and people I had once thought were part of my support system began to make ignorant and insensitive comments. “Why give him chemo went there has to be a natural treatment out there? You’re just being cruel to the baby putting him through that. “ “If you had eaten more blueberries when you were pregnant, maybe this wouldn’t have happened. “ “If both eyes have cancer just chop them out and be done with it. “ and my favorite, “when are you going to get fixed so this doesn’t happen again? “ I stopped giving community updates and pulled my inner circle even tighter.

Aside from an allergic reaction to his antibiotics, Dominick remained the same happy baby he had always been. The chemo didn’t even slow him down that first cycle, and the stranger looking at him never would have guessed he had cancer. On the rare occasion we did go out, strangers would always comment about his big beautiful eyes. Jaws would hit the floor when we informed them that those eyes both had cancer. Strangers expressed there’s sympathy to Dan and I for how difficult it must be to have a child with cancer and volunteered to pray for our family. Why were we treated so much better by complete strangers then we were our own friends, family, and other RB parents who criticized our treatment decisions while defending the doctors who refused to treat Dominick.

Angel flight could not help us get to the December checkup, so NCCS paid for my mom to fly with Dominick and I while Dan kept the older two children at home. We were fortunate that the Ronald McDonald house not only had a room for us but had a group of high school students helping families with Christmas. The process was to fill out a basic form about your child, and they will receive a letter from Santa in the mail. We were invited to look around Santas workshop and pick out five toys per child that would be wrapped and boxed up ready to go. All we had to do was pay to check the box on the airline. What a relief as Christmas was coming fast, the budget was tight, and we had been so overwhelmed with coordinating healthcare we had barely had time to think about Christmas.

Dominic‘s exam revealed that the chemo had been successful, and we continued another cycle the way I had previously proposed to the oncologist. His blood counts were great for a kid that had received chemo. We scheduled his next exam and third cycle of chemo for mid-January, and took him home trying to focus a little more on Christmas and a little less on cancer.

Day 19 about Heather posted by Daniel:

December 2008-February 2009

When a baby is rolling around, and accidentally drops onto the surface below, there is a problem. When said baby has had Carboplatin, you have an emergency. Carboplatin tends to weaken bones. Thus, what otherwise would have simply been a teachable moment for me and my parenting skills turned into a fractured femur for Heather.

Fortunately, the body cast came off just in time for Christmas. We spent the holiday celebrating and bracing ourselves for the last chemo infusion.

At the January check-up, her platelet count was dangerously low again. We had hoped to avoid another transfusion, but the need was clear. Thankfully, we knew that this segment of her journey was nearing its end. If the cancer returned, we would have to control it with local treatments. Failing that, the only options left on the table were much more drastic in nature.

At this point, we were about to make our long-awaited move to Seattle. On our way out of Idaho, we squeezed in one last EUA. Nothing had been seen since July, so we hoped for a clean exam.

After the exam, the ophthalmologist informed us that there was, “no significant growth”.

Wait…what?

Day 20 about Dominick posted by Marian:

Early 2013

Dominick remained well through Christmas, but as the new year approached his counts started dropping and his siblings started getting sick. Dan took the older two to stay with grandma in hopes that Dominick would not get the virus they had. Unfortunately, it was too late so off to the hospital we went for IV antibiotics. Luckily, he bounced back enough to be able to handle his mid-January chemo.

One morning I noticed that he was covered in bruises and feeling a bit warm. I took his temperature and found he had a low-grade fever. In a matter of hours that low-grade fever had climbed to 105°. Off we raced to the hospital again. By the time we got there his temperature had reached 107°. The hospital did their best to cool him off and gave him Tylenol, but ultimately discharged him saying that it was safer for him to be at home than in the hospital because they did not have anywhere to keep someone that sick. I went home and called his primary care doctor asking if we should take him to the Children’s Hospital in Colorado. The doctor told us that with a temperature that high it would be dangerous to travel across Wyoming. “If he starts to have seizures in the middle of Wyoming there will be nothing you can do” the doctor said. While I understood the doctors thought process, I was terrified to handle the situation by myself at home. We alternated Tylenol and ibuprofen, used lots of peppermint oil, offered continuous prayers, and left the rest to God. Eventually the fever broke, and Dominick’s blood counts slowly began to improve.

Day 21 about Heather posted by Daniel:

2009 & 2010,

The other ophthalmologist entered the room before we had a chance to inquire as to what “no significant growth” meant. She claimed that there was nothing to report at all, and we weren’t in the mood for a fight. Given this new information and the fact that her retinas were still developing, we put a rush on relocating to Seattle.

This is a basic idea of how the agenda for our moves unfolded: unload the truck, apply for Medicaid, establish contact with oncology, put in a change of address card…In other words, mildly controlled chaos. Heather’s first EUA was within a few weeks of us arriving in Washington. As we suspected, new tumors had emerged.

Fortunately, the new tumors were tiny and posed no threat to her vision. As it happens, these would be the last new ocular tumors that would emerge. In the Summer of 2010, the surgeon in Portland would retreat these growths out of an abundance of caution, but this stretch of the journey was effectively over.

Once the danger within the eyes was entirely contained, our primary source of concern was monitoring for secondary tumors that might pop up in other parts of the body, especially the brain.

On Memorial Day weekend, 2010, we took Heather into the hospital in Portland for her semi-annual MRI. Unlike every other establishment that we had been to, Portland assigned the same nurse for both pre-op & post-op care.

Marian & I both noticed a distinct change in the nurse’s demeanor between our interactions. Before taking Heather back, the nurse was friendly and upbeat. Afterward, she was somber. Something was off.

Knowing that the purpose of this exam was to screen for a potentially fatal brain tumor, we spent the weekend agonizing over our next moves. If we were evaluating the situation correctly, time was of the essence. We spent a great deal of time in prayer that weekend and finally settled on a strategy if our worst fears were confirmed.

As it happens, there was something on the scan. However, we still haven’t gotten a straight answer as to what it is. Boise called it. A cyst, New York called it white matter brain damage, and Denver says it’s a figment of everyone else’s imagination. Seriously, this is how inexact radiographic studies can be.

Over 2 years after the initial treatment had begun, Heather was finally beginning the transition from active patient to survivor. 4 central lines, 6 rounds of chemo, 2 transfusions, 1 life-threatening infection, dozens of times under anesthesia, the list goes on and on. She is one of the lucky ones.

Through it all, there is absolutely no doubt that we made the right decision by bringing this child into the world. Despite the trials of survivorship that we will discuss on Sunday, she has a very fulfilling life. I can’t imagine not having this little girl in my life.

Day 22 about Dominic by Marian:

March 2013

Dominick’s eye exam showed that the tumors were dead, however he was too sick to receive his chemo. The oncologist told us to come back in 2 weeks to see if his blood counts had improved enough for chemo. As luck would have it, I had scheduled weeks in advance for myself to be seen by an oncologist in Seattle the week after our Denver trip. This meant that in three weeks I traveled from Idaho to Denver, Denver back to Idaho, Idaho to Seattle, Seattle to Salt Lake, Salt Lake to Denver, and once again Denver back to Idaho. I did all this with a very sick, very immune compromised infant.

Colorado children’s had wanted Seattle children’s to draw labs while I was there. This would allow us to find out if Dominick was healthy enough to be worth traveling back to Denver for his chemo, but Seattle refused to even do that much. The oncologist personally called me and first shamed me for demanding the doctors give my baby poison, and in the very next sentence criticized me for only using two of the three chemo drugs. Fortunately for us, Dan had the brilliant idea to check with primary children’s hospital in Salt Lake regarding the labs. They were more than happy to draw labs and send the results to Colorado even though Dominick had never been seen there before.

I was in that moment so focused on fighting for Dominick that I rarely had time to think about the unidentified growths in my own body. I was met at the hospital in Seattle by a dear friend who had volunteered to be there for emotional support as well as to help with Dominick while I was with the doctor. What a relief it was to learn that the abnormal growths inside me were not malignant nor would those particular growths ever become malignant.

After leaving the hospital, my friend pled with the hotel to extend my check out so that I would have a private place to keep Dominick away from as many germs as possible. The hotel was able to accommodate for an hour. I still had several hours before my flight left and was at a complete loss of what to do. I did not want to go to the airport that soon. My friend proposed that we go hang out in a local bar. “Are you crazy? I thought you had given up drinking years ago, and you know I’ve never touched a drop of alcohol in my life nor do I plan to” I said. “It’s one in the afternoon, and the bar is usually dead around this time. I never said anything about drinking. It is just a place we can go where we can get high quality hamburgers for cheap and avoid large amounts of people.” replied my friend. Fortunately, the bartender had compassion on us and allowed us in. How do you turn away 2 blind people with an adorable baby who has cancer?

Unfortunately, the people in the airport weren’t quite so understanding. Despite the sheet I had placed over Dominick‘s stroller, and the signs on both sides boldly stating that he was immune compromised and to please stay away, every time I turned around it seemed someone else was trying to grab my baby. Even the kind old gentleman that sat next to me on the flight stepped in a couple times when the flight attendant was going overboard. What a relief it was to finally see my mother in Salt Lake. Somehow, she had talked her way into being able to meet us at the gate, and good thing for that flight attendant that she had.

We went to primary children’s hospital where we learned that Dominick had bounced back barely enough to receive chemo. They would draw labs again once we got to Denver, but the doctor thought it good enough to be worth the drive. Chemo was given, and he handled it like a rockstar once again.

Day 23 about Heather posted by Daniel:

As Marian alluded to last night, coordinating referrals and getting hospitals to play nice can be challenging at times. Over the course of her treatment, Heather was seen in 5 different states. It goes without saying that she has seen several ophthalmologists and oncologists, but she has also been seen by a number of other specialists also. These include neurology, orthopedics, OT, PT, neuropsychology, GI, and probably others that I am forgetting.

As I mentioned in a previous post, I have spent the last several years coordinating care and managing referrals while Marian focuses on day-to-day care. This experience has taught me a great deal about our medical system, and how to get access to care. A few of you have approached me with questions about this over the years, so I wanted to use this opportunity to share a few ideas.

Knowledge is power. Not everyone will learn how to read academic journals, but everyone can learn how to ask meaningful questions in their conversations with healthcare providers. This skill takes time to develop, but the liberation that comes from honing it is immeasurable. Our questions and research significantly bolstered Heather’s experience and changed the dynamic between us and her providers.

Seek out divergent perspectives. Basically, nothing in healthcare has one right answer. rather, there is nearly always a spectrum of opinions and approaches that are ever-changing. This diversity of thought actually strengthens the quality of care. As such, there is no need to shy away from disagreement. When we faced forks in the road, these dissenting opinions brought clarity to the picture.

You can choose where to be seen. In the vast majority of cases, patients can choose to receive care from a range of options. Providers often refer to the nearest geographic location, assuming that is what the patient desires. If that is not what you want, say so! Private insurance can complicate things upon occasion, but there are methods of working through the red tape. We spent quite a while commuting from Idaho to Denver for care because it was the best option. Asserting that choice significantly improved our comfort level with the process.

Some of you have shared privately that you don’t feel capable of replicating some of the tricks I’ve pulled. Fact is, that’s not true. I wouldn’t have shared those elements of the story if I were unwilling to teach anyone who wants to learn how to get their needs met. I am an advocate at heart, and I love helping people solve problems.

One of the main purposes of these posts is to raise awareness. Not only with regards to childhood cancer, but also rare diseases in general. No one should ever feel powerless, or as though they are alone in this fight. If we choose to lift one another up, everyone rises.

Day 24 about Dominic by Marian:

April 2013

Somehow Dominick managed to stay out of the hospital for the remainder of March and the first part of April. This allowed me to focus more of my efforts toward working with make a wish Idaho and figuring out if it were possible for them to grant Heathers wish. We had applied after Dominick had started treatment and we saw the emotional effect that watching her baby brother go through treatment was having on her. She knew all about exams under anesthesia, and she hated to see her baby so sick from the chemo.

We optimistically headed to Denver for Dominick‘s last chemo treatment. It had started to feel like we could see a light at the end of the tunnel. Chemo was almost over, and though Dominick would still require frequent eye exams under anesthesia, they did not come with the same risks as chemo. We could finally start working on building his immune system without worrying about turning around and tearing it back down. What a relief! Heather‘s savannah kitten she had wished for would soon be joining the family. Kitten Grace would be able to keep Heather company when she got left at home because she no longer needed the appointments with the same frequency Dominick did. We seemed to be gaining positive momentum in several areas all at once.

We generally scheduled eye exams for the morning, and chemo in the afternoon, however that time was different. The ophthalmologist was not able to see him until afternoon, so we went ahead and scheduled chemo for the morning. Labs were not great but good enough, paperwork was completed, and the nurse came in and started Dominick’s infusion, while I settled in for my several hours of snuggle time with Dominick who usually slept through chemo. As the second medication was being given I noticed that Dominick was feeling a bit warm. My mother confirmed this and noticed that he had a bit of a rash. She pointed this out to the nurse who observed and said it didn’t look too bad. We would keep an eye on it. Not even 10 minutes later my baby was burning up and the brightest red I ever did see. My mom urged the nurse to come back in and look again. She immediately stopped the chemo and brought in the Dr..  Dominick was diagnosed with having red man syndrome and an allergic reaction to his chemo. They gave him Benadryl and informed me there was nothing else they could do. If he continued to get worse, they may have to cancel his eye exam. All I could do was pray. He would never receive the full six cycles of chemo that was recommended but I prayed that what he had received would be enough to keep the tumors dead, and that no new tumors would grow. If they did, we had just eliminated one of the biggest defense strategies as an option.

Fortunately, though Dominick remained red and burning up, oncology was able to talk to the anesthesiologist, and they still allowed the eye exam to occur. The tumors were not active and have been that way every exam since that time.

No day 25 post was included.

Day 26 about Dominic posted by Marian:

We continued with Dominick‘s monthly eye exams under anesthesia at first, but as they continued to be clean, we slowly extended out to six weeks, eight weeks, three months, six months, and eventually annually. When he was three, he was brave enough to hold still good enough for in office exams. We eliminated the risk of anesthesia and allowed Dominick more time to actually interact with his personal hero.

That very first in office exam, the doctor told Dominick to sit up tall and grab onto the machine like he was driving a motorcycle. For the longest time Dominick was obsessed with motorcycles and insisted he was going to have one when he got big. Though his obsession with motorcycles has faded, his desire to become an eye doctor remains strong. He truly is one of the lucky ones, and he knows it. He has seen what retinoblastoma has done to me, his sister and other survivors as well as those who have lost their battle. He hates cancer in a way that only someone who has fought it can, and he is determined to help others when their battles.

Day 27 by Daniel:

This is actually going to be a post about NGOs that are doing some awesome work. While all of them assist kids with cancer, they also tend to help patients with other concerns as well. I will give a brief synopsis of what they do, and the population that they serve. As always, please let me know if you need help locating assistance with this sort of stuff. Researching and coordinating are stress relievers for me, and I love to help out where i can.

Corporate Angels: This organization flies an er patients of any age (and their family members as space permits) to/from appointments. They do this by partnering with corporations who have empty seats on their jets on a given route. For example, Nordstrom was already planning to fly it’s jet from DC to Seattle on the day that we needed to return from the East Coast to WA. Corporate Angels arranged for us to meet up with the pilots at the airport, and fly home at no charge.

Alex’s Lemonade Stand Foundation: ALSF is known for being a leading source of funding for research into pediatric cancer. What a lot of people don’t realize is that there is a separate fund set aside for families who require assistance to get to appointments at a major hospital. Families who receive assistance from this program generally earn too much income or have too much in the bank for other programs. This service is crucial because one can go from relative comfort to bankruptcy in a hurry.

Ronald McDonald House: Families who are temporarily displaced (i.e. traveling for care or hospitalized) can receive lodging and other services for very little cost. To give you a basic idea of the need, Denver has 2 facilities, and it’s not at all uncommon for both places to be full, and have a waiting list on a given day. Although they are loosely affiliated with the restaurant, they don’t really receive any funding from that source. Almost everything is provided from donations and volunteers.

Angel Flight: This NGO partners patients with private pilots who donate their time and fuel. This group tries to accommodate anyone who needs help, regardless of age or medical condition. The ingest drawback with them is that their group is broken into regions, and they can’t arrange travel outside of certain geographic boundaries.

Miracle Flights for Kids: The are able to arrange travel on commercial flights in slightly limited circumstances. Although they offer assistance to patients of any age and with any medical condition, their application process was a bit cumbersome for my taste. Nevertheless, they are still filling a need.

St Jude: This is definitely the most famous pediatric cancer charity, but it isn’t well understood. They do a tremendous job of furthering research and treating kids who would otherwise have difficulty receiving quality care. However, most kids (such as my own) aren’t able to go there for various reasons. In order for them to fulfill their mission, they are very selective about who they accept, and at what point during the treatment process a child can be treated there. Every new patient must fit within a treatment protocol, which protects the integrity of their research, but it also creates some barriers to care. I love what they are doing, but the limited scope of their work accentuates the need for the other NGOs listed above.

Ronan Thompson Foundation: I tried to avoid focusing on charities that only fund research for one branch of childhood cancer, but I couldn’t help highlighting this one. Ronan was a little boy from AZ who passed away from brain cancer. His mom turned her grief into action by forming this organization, and inspiring Taylor Swift to record and perform a song on his behalf. You can find “Ronan” on YouTube, iTunes, and Apple Music. Fair warning, you will cry.

There are several others that I didn’t get to, but you get the idea. I tend to avoid supporting most of the more recognizable NGOs. Most of the ones you see on TV are quite wasteful, and they do next to nothing for “rare” cancers. I could go more in-depth, but that’s a conversation best had off of Facebook. Anyway, I hope this has been informative. If you would like to know more about any of these organizations, let me know and I will do what I can to help.

Day 28 by Marian:

Surviving versus thriving after cancer.

Is it enough to survive cancer? Some would say so, but fortunately for me I had the type of mother who wanted me to thrive. There are sadly those individuals who view my life as a blind person to be a fate worse than death, but thankfully my parents did not have this view. Mom knew from the start I could live a fully functioning life if I just had the proper skills. She knew she could not teach me the skills on her own and tried to find helpful resources. She saw a bunch of people with long white canes in a restaurant and had to crash the party in hopes of helping me. That was one of the best things my mother ever did for me as it was my first introduction to the National Federation of the Blind and the philosophy of being able to live the life I want.

In many ways I had a normal childhood, enjoying the same things as my siblings. Of course, there were those ignorant adults in my life who refused to give a blind child a chance, but in their own ways they taught me to fight and helped me become a stronger person. I tried not to think about cancer, yet awkward stairs and insensitive comments wouldn’t allow me to forget. The same radiation that had saved my life deformed my face which not only caused the painful remarks from outsiders, but extreme head pain as my bones have not grown properly.

Every year I would go for cancer screening. Staff had to come by and see me while I was there. Somehow, they were all shocked that I had not died as many of the pediatric patients in the 80s had. I saw my original oncology nurse while I was in the hospital doing other business at age 19. She informed me that she had just been talking about me a few weeks earlier bragging about how I was the youngest and smallest patient she had treated and how remarkable my outcome was. I had not seen this woman in years prior to that, and yet she was still discussing my case.

What a difference it was to go into the oncology unit as a parent. These days the staff expect children with retinoblastoma to survive. No one is shocked that my kids are still alive when I take them in for their checkups. Though the long-term side effects of the chemo therapy they received are different from the radiation I received, there are still side effects and a lifetime of surveillance.

Even though all our tumors have been dead for years, cancer continues to affect every day of our lives. Just the other day I held my little girl as she cried because of insensitive inquiries about what’s wrong with her eye. Dominick appears to be physically fine, but cancer bothers his big heart in ways that cannot be explained. More than anything else he wants to be the superhero saving all the children from cancer.

Yes, the mutation is there in every single cell of our bodies. It affects us every day of our lives in one way or another. However, it never has been and never will be an excuse not to live life to the fullest.

Day 29 by Daniel:

Reflections:

First, I would like to thank all of you who have liked, commented, or simply followed These posts over the month of September. Marian and I have broached some incredibly tender topics, and I know that they are not easy to read sometimes. We wrote about these things, not because they are comfortable, but because they need to be brought into the light.

Second, I can’t emphasize enough that we have been profoundly blessed through all this. Yes, some of the trials were incredibly difficult to navigate at the time, but there was always that underlying hope and peace that arises from faith that it will eventually work out in the end. We never prayed for a specific result, but for an increased ability to make the right choices and maintain perspective regardless of what came about. In my mind, those prayers were answered and then some.

Unlike most children who undergo treatment for retinoblastoma, both of my kids came out of this with both eyes intact. For all the setbacks, it could have turned out so differently. My children came away from this relatively healthy, which is worthy of celebration all on its own. More than that, they are now resilient, compassionate, and able to take on whatever comes their way.

Unlike many parents who go through this, Marian and I were also fortunate in that we never disagreed on any major health-related issues. Even when the marriage was dying and tensions were high, we were always able to focus on getting all 3 of the kids exactly what they needed. We learned how to cooperate like that through this adversity, and it has now permitted every aspect of our co-parenting. Divorce often destroys collaboration between exes. I am eternally grateful that we were able to avoid that pitfall.

On the topic of forgiveness, I also want to touch on my healing process regarding the inexcusable treatment that we received in Seattle. There’s no question that what took place with that hospital was completely unacceptable. Yet, holding on to a grudge simply wasn’t going to serve any positive purpose. Long story short, I prayerfully sought help in moving past what took place, and my life has been better for it ever since. I don’t bring this up to make myself sound like some sort of saint, I am quite imperfect. Rather, I want to illustrate the essential role of forgiveness in the healing process.

Over the last decade, I have learned countless lessons about advocacy and cooperation. I have been asked to coordinate and problem solve through some nearly impossible situations. My children, their mother, and I have been required to endure hardships that I wouldn’t wish on anyone. Nevertheless, we are blessed. We have faced failure, and we have seen miracles. With every battle, we have all emerged stronger and more capable human beings. Even at the darkest moments, God’s grace has always been sufficient.

Day 30 by Marian:

Final childhood cancer awareness post.

I just want to take this post to thank those who have joined in this journey with us, and to recognize people who have done the behind the scenes work to help us have such a wonderful outcome. We often say that we are lucky, but truthfully blessed is a better word. We have always been given who and what we needed to win these battles.

How bittersweet it was for us five years ago when we received a card in the mail informing us that our favorite surgery scheduler was moving on to better things. Of course, we were happy for Lauren McCaddon to be moving on to new chapters of her life, while we also recognized the invaluable resource that we would no longer have. Thankfully, we were done with active treatment by that time. Same doctor, same office, different surgery coordinator equals an entirely different experience.

Then there was Janine Jovet Hernandez Who became our meal/babysitting coordinator in those first months of Dominick’s life. What a relief it was to have delicious and nutritious homemade meals brought to us on some of those days spent in the hospital where it was tempting to not eat at all or to grab something quick and unhealthy because cooking would just be too exhausting.

I wish I could tag everyone who has helped us, but I’m not even going to try as there are way too many, and I wouldn’t want to leave anyone out. From handmade blankets to prayers and encouraging words, we have been given the help and the support we have Mia to get through these times. While it is easy to overlook the simple things, sometimes it was those very things that helped us get through.

I would never wish for anyone to go through the things we have, but I would also never trade the lessons learned nor the relationships that have been strengthened through these experiences. I was raised to be Miss Independent never wanting to need anyone for anything, but having two children with cancer has forced me to accept help that I otherwise wouldn’t have. If you are one of the mortal angels who has helped to teach me these lessons, thank You! And thank you to all our readers for reading our stories and continuing to support us. If sharing our stories has changed the way even one person will approach other families who may be experiencing similar things, it will have all been worth it.

Epilogue (09/, 2026)

Since we made the original posts, Heather and Dominick have continued to grow and thrive. Heather is a barista With dreams of becoming a paramedic And Dominick is a high school freshman. Both of them have shown leadership potential in their own rights, and we are excited to see what comes next for each of them.