2013 started out a great year for the Kupsky family, they welcomed Eli into this world on July 16th and were looking forward to celebrating Owen's 2nd birthday and their 1st anniversary in September. On August 17th their lives would change forever - after a family afternoon at the Brown County Fair, Cammie found a tumor on Eli's hip while changing his diaper. That quickly followed with a trip to Children's Hospital in Milwaukee for tests. They were expecting news of a harmless lump that could be easily removed with surgery, to have their doctor come out and ask to speak with them privately- her words are forever embedded in their minds "I have bad news, Eli has cancer and it's bad, it's really bad".
They would wait two weeks to hear stage 4s Neuroblastoma. This is the only cancer diagnoses known that can regress on its own so, the initial plan was to monitor the cancer with Ultra-sounds on Eli's liver and abdomen every 6 weeks and to watch Eli closely for signs of distress. (He had large tumors on his liver that could cause liver failure and/or press on his lungs and cause difficulty breathing). At the time of diagnoses he had about 15 tumors that you could see and feel and many more internally in his liver and by his kidney.
After hoping for natural regression but seeing numerous new tumors for 5 months, on Tuesday Dec 3rd they heard the words they feared - Eli's cancer has spread to his bones and into his lungs, and they would need to start treatment. This changed his official diagnoses from stage 4S to stage 4 Neuroblastoma. The initial treatment protocol called for 8 rounds of chemo every three weeks and they started treatment on December 10th.
After 2 rounds of chemo they did a CT scan to determine if the chemo was working and the tumors were regressing. After review of this scan it has been determined that although there are no new tumors - the tumors on his lungs have grown. Most of the other tumors are showing signs of regression, however are not reacting as positively to the chemo as initially hoped.
Since things were not progressing as expected, and after a discussion with their doctors, they were referred to a Neuroblastoma specialty clinic in New York to hopefully get a better handle on their options moving forward.
The trip to New York was good and bad. They found a tumor in his spine which was very disappointing and new. Because of this tumor, it automatically pushed Eli into the high risk neuroblastoma category. The first step with this news was to get Eli into surgery to remove the tumor. While in surgery, 2 tumors in the spine were removed. Surgery was considered successful but because of the cancer now being in his central nervous system and falling into the high risk category, chemotherapy would need to be increased to a higher dose. To date Eli has had one round of the higher dose chemo, this is done outpatient 5 days in a row for 5 hours a day (2 hours pre-hydration, 1 hour of chemo, 2 hours of post-hydration). There is an obvious difference with the higher dose chemo, Eli suffered from a lot more nauseau and recovery takes significantly longer but through it all he has kept a smile on his face.
After the first round of higher dose chemo it was also recommended that Eli does a stem cell harvest, this was not easy on him. There was medication that he had to take every day for about 2 weeks that made his bones sore and made him very achy and crabby. The stem cell harvest produced enough for at least one bone marrow transplant possibly two but the goal is enough for a minimum of 3 transplants so after round 2 Eli will be going through the same process again.
They still feel they are incredibly blessed with 2 boys that are all smiles and hugs. People have made comments to them about how strong they both are and all they have to say is "We are doing what every other parent would do "“ taking care of our kids the best we can, we give a lot more kisses and hug tighter and just wait for things to settle and try to appreciate the small things more. Hopefully tomorrow is easier than today and that's all we can hope and pray for and no more new tumors." Owen has been an amazing older brother showering his brother with hugs and kisses and is not ashamed to yell at the doctors if he's in the room and they make Eli cry. Eli has astonished them with his smiles and laughter no matter how painful or nauseating the last treatment was. His engaging personality has made him a favorite to every doctor and nurse that he has met. Cammie has said, "Our life as we know it will be different, we are scared and don't have a clue what to expect but we are ready to help our little man fight any way we can!" Cammie, Aaron, Owen and Eli have a long journey ahead of them with a lot of unknowns and through all of the ups and downs and learning of Eli's cancer they have become a stronger family and have been shown true compassion, love, and support from their family and friends.
As their friends and family we ask for your support and prayers!