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The Patterson Family

We have always remarked that our family was destined to be.  We met in the Army and through sheer luck, ended up in the same units through a five year tour, including more than two years together in Iraq and Afghanistan together.  After leaving the Army in 2008, we returned to Colorado to raise a family.  Blessed with our son Tristan in 2008 and our daughter Emma in 2010, our “plan” for our family appeared to reach completion with the birth of our third child, Jackson in 2013.

We counted our blessings and Jackson began growing into a happy and feisty baby boy.  Jackson was infamous with our family and friends as the baby who gave you “stink face” if he was unhappy with you. He was the only one in a family of five that had red hair. He was the baby of the family with a big sister and brother who adored him. His sister would hug and kiss him constantly throughout the day resulting in a lot of growls of displeasure from Jackson. “Never without my permission!”, we imagined him trying to say.  We used to joke that Jackson had an “old soul”.  He seemed to have a comprehension of the world around him far in excess of his young age.  Life was good.

In November 2014,when he was 11 months old,  we took Jackson to his pediatrician over concerns that his once cute “buddah belly” appeared to be growing even larger.  Jackson showed no outward signs of sickness. None. The day after we took Jackson to the Doctor, an abdominal ultrasound was performed.  Within 20 minutes, our doctor called and told us, “I’m sorry, Jackson has a tumor”.  Those words set into motion a whirlwind chain of events that would change our lives forever.

That day, we were sent to Children’s Hospital Colorado, where we met with the amazing staff in the Center for Cancer and Blood Disorders.  Jackson was admitted that afternoon so we could begin the work of identifying what we were up against.  We both stayed in the Hospital for that first week.  Jackson underwent scans, a biopsy and central line placement.  The scans showed that Jackson’s large primary liver tumor had already started to metastasized to his lungs.  Ultimately we were give then diagnosis of Malignant Rhabdoid tumor of the liver with pulmonary metastasis.  Jackson’s amazing doctor, Dr. Brian Greffe, didn’t pull any punches when delivering the news, telling us Jackson had “maybe a 10% chance” of beating the disease.  We were also advised that because of the low probability of survival, we could also choose to not pursue treatment.  We took a few minutes, allowed ourselves to process the news and then then told the doctor we would take any option that gave Jackson a fighting chance.

Jackson started one of the most intense chemotherapy regimens in pediatric medicine. One week in the hospital, two weeks out was the standard drill.  Our lives revolved around constant lab draws, platelet counts, and obsessing about Jacksons ANC. His life, our lives, changed suddenly and have never been the same. Life for our entire family was different despite trying to keep routines. Mom stayed with Jackson every time he was in the hospital. Dad had to stay home with Tristan and Emma rather  instead of going to work. In December 2014, after a few cycles of chemotherapy, Jackson had his second PET scan.  We braced ourselves for bad news, as the size of Jackson’s abdomen did not appear to have decreased.  The news was not what we had expected.  Jackson’s primary tumor showed almost no activity on the PET scan and many of the lung nodules appeared to be shrinking.  The treatment appeared to be working.  On February 5th, 2015, Jackson endured a six hour surgery in which the large primary tumor was successfully removed. Our “Jack Jack” appeared to have been given a new lease on life.  We allowed ourselves to believe that our miracle was actually going to happen.  Because of the aggressive nature of this cancer, his course of treatment and the chaos that ruled our lives,  had to continue.

In late Spring 2015, a PET scan revealed a small recurrent lesion on Jackson’s liver. The initial progress on his lung lesions also appeared to have stalled.  A different combination of Chemotherapy drugs was tried, to no avail. While our doctor researched other treatment options, including a possible trial at Saint Judes, we tried to stay optimistic.  Our family entered our local 4th of July parade and “Team Jackson” marched with family and friends to raise awareness of pediatric cancer.  Jackson was in high spirits and seemed to be doing so well. Within 48 hours of leading his team through the parade, Jackson’s health began to deteriorate.  Jackson was admitted to the hospital one last time.  After several days of inconclusive tests, Jackson was sent home, though he now required supplemental oxygen at all times.  At a follow-up clinic visit, Jackson’s doctor told us that because his case was so advanced, Jackson did not qualify for any clinical trials at Saint Judes.  There were no other options to cure our son.  In consultation with his doctor, we brought Jackson home on Hospice care on July 10th, 2015.  We tried to spend every possible second with Jack Jack. We tried to prolong every moment.  On July 23rd, Jackson died at home, with his Father, Mother, brother, sister, aunts and grandparents by his side.

Jackson was the baby in our immediate family; the second grandson on both sides of our families. The first Jackson, the only ginger and our Hero. Throughout a brutal course of treatment that would have brought most adults to their knees, he was such an amaing happy boy.  He was a warrior.

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 Cavan Family

Healthy pregnancy, healthy birth, and healthy baby—his mama and dada, Deana and Jim, were overjoyed. For the first six months, life felt like it was meant to be. Rett was by no means an easy baby, but he was thriving, aware, and simply beautiful to look at. On October 28th life changed forever as a visit to the pediatrician for what seemed to be a stomach bug turned into every parent and child’s worst nightmare. Cancer, an extremely large solid tumor, was found on his liver. He’d start chemotherapy immediately. Malignant rhabdoid tumors are nothing to scoff at, in fact, they are extremely rare and aggressive and the prognosis is dire.

Rett and his mom and dad spent most of the next 4 months living at Boston Children’s Hospital. After two cycles of the strongest chemo they can give a child, the doctors felt ready to try removing the liver tumor, although it would not be easy because of its size. What was most baffling however was that while the chemo succeeded in killing 99% of the cancer in that primary tumor, it did nothing to stop rogue cancer cells that were suddenly found invading his lungs. This new metastatic disease slashed the probability of recovery in half.

Against the odds, Rett’s little liver regenerated and started functioning well enough for more chemo three long weeks after surgery. But during this time, his lungs filled with more cancer. After just one more unsuccessful cycle of chemo, the doctors in Boston could do no more. A three-day trip to St. Jude’s Children’s Hospital in TN with the hopes of entering a clinical trial proved that there were absolutely no more options, and not much time either. Rett got to experience one last adventure on his med-flight home complete with door to door ambulance rides (one of his favorite toys was his wind-up ambulance).

Three days later at home on February 22nd, after his closest family members all got to say goodbye, Everett crossed over to the spirit world during a magnificent sunset. The number 222 (the date he passed) is shown to those who are awakening to the presence and guidance from the angelic realm. Its vibration creates inspiration, big ideas, and the persistence needed to manifest dreams into reality. Gratefully, he left his parents feeling not just heartbroken, but also selfless, motivated, and bountiful—carriers of his benevolent torch in the form of Rett’s Roost.

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