Last September Kai had his annual Well Visit and came away with a clean bill of health. But suddenly in the beginning of October his father Gus, found large very dark purple bruises on his backside. When he asked him what had happened Kai didn’t know how he’d gotten them.
On Oct. 11th Kai’s parents too him back to his pediatrician Dr. Lorna McFarland, and Gus only had to take one look at her face to know something was terribly wrong.
After drawing Kai’s blood they found his platelet levels were at 10,000, where normal levels are between150,000–450,000.
Oct. 13th was their first appointment with Dr. Finklestein in Long Beach Pediatric Oncology/Hematology. At first it was thought that Kai had ITP (Idiopathic Thrombocytopenic Purpura). He was treated for ITP and they were hoping that would be the end of the problem since ITP usually resolves itself after 6 months.
When the ITP treatment didn’t show results (on Gus’ birthday, on Oct. 22nd), they brought Kai in for a bone marrow aspiration. It showed Kai’s bone marrow was working at 25% and they would now wait and see if he could recover on his own. Kai, being very aware and inquisitive, asked the doctor which bone the doctor was going to take from his body and how he was going to put it back in 🙂
At this time Kai became blood transfusion and platelet transfusion dependent, with increasing frequency to a weekly basis. The doctors also sent his blood to the Mayo Clinic, and places all over the US to perform countless tests and rule out everything imaginable.
In November they brought Kai in to have a 2nd bone marrow aspiration surgery, and if his bone marrow were at higher capacity they would have known for sure that he had Idiopathic Hypoplastic Anemia. But the Monday after Thanksgiving, Kai woke up in a pool of his own blood, and with a bloody nose that wouldn’t stop. When the family got to the hospital, the anesthesiologist called off the bone marrow aspiration surgery and hospitalized him for three days. This was the first of many unscheduled prolonged hospital stays.
After transfusing blood and platelets the surgery was performed for his second bone marrow aspiration. This also began Gus and Beth’s journey of endless nights on the computer learning about the different diagnoses and their treatment and prognosis.
For 6 days the doctors thought they saw improvement from the preliminary reading of the bone marrow aspiration. Gus and Beth shared this news with friends and family as one of the highs along this ongoing journey of many highs and lows. After further review from the pathologist however, they decided that there was no improvement, and that now they were looking at Idiopathic Aplastic Anemia. A very rare disease that affects only one in a million people.
The next step was having the whole family’s blood drawn to see if anyone was a bone marrow match. With a 1 in 4 chance, Kai’s brother Klaus was most likely to be that match.
At the end of school in December the kids in Kai’s class gave him a card, and the hardest part for Gus and Beth was knowing that he may not finish the end of the school year as his condition seemed to worsen. Over Christmas they waited to see if Klaus’ bone marrow matched and later got an appointment at UCLA to find out about a bone marrow transplant when they found out he wasn’t. Blood and platelet transfusions continued, including appointments on Christmas eve and New Years eve.
In January, the family found out that UCLA has two potential blood matches and two potential stem-cell matches. At UCLA they re-categorized Kai’s condition as Severe Aplastic Anemia and suggested 1 or 2 rounds of chemotherapy treatments (6-8 months long each) and then a bone marrow transplant if full results weren’t seen in that period of time. The doctors recommended further match searches in order to give Kai the best chance at survival. As parents, Gus and Beth were left with two choices: treatment that only may put the disease into remission for an unknown period of time, or the bone marrow transplant which creates a much higher risk of complications with an unrelated donor. Also, you only get one shot at a bone marrow transplant. If complications arise, the risk of losing Kai increases. They were told that this disease is harder to treat than Leukemia and more serious – the doctor’s most serious diagnosis.
They opted for the chemotherapy treatment first, and in January Kai underwent surgery to have a portacatheder put into his chest.
Jan. 18th was Gus and Beth’s 19th wedding anniversary and the family celebrated by going to the Air Museum in Chino, because it was a few days before Kai’s chemo treatments would kick off with a long hospital stay.
The first hospital stay for beginning chemo was supposed to be between 10 days and two weeks, and Kai made it out in 8 days! During this stay, Kai was given round the clock medicines by way of IV drip and oral. Kai insists that the “breathing treatment” (which is therapy given through an oxygen mask) is the worst part of the entire process. This was given once a month but now has been changed to an IV drip. His parents were so excited that he did so well, but unfortunately 3 days later he collapsed at home and was completely unresponsive – Beth had to call 911 to have an ambulance transport him back to the hospital. He woke up at 11pm that night, looked at his mom and asked how he had gotten there (the pediatric ICU). When Beth told him he came by ambulance he said “What?! I missed the ride of my life?!” This hospital stay was a result of the medicine’s effects causing a fainting heart rate and high blood pressure. After 10 days they stabilized him and he was released.
Once again, only 3 days later, they returned the ER after they found that Kai was urinating red blood. And this stay lasted another 5 days.
Countless unscheduled, prolonged overnight stays in the hospital have continued since then. His diagnosis has now changed to VERY Severe Aplastic Anemia and his immune system has been completely wiped out. Kai is very susceptible to anything and one of the most recent prolonged stays was due to a fever that was 103.9 degrees. He came home from this visit on an IV drip and with a home nurse. Anytime Kai has a fever he needs to be hospitalized because his body can’t fight anything off.
As parents Gus and Beth lose sleep and both often cry daily (sometimes up to 10 times a day) fighting this disease. The prognosis as recent as 10 years ago was very very bleak. Gus and Beth are hoping that more time will help the doctors find better ways to have success at curing Kai’s disease. Gus had recently won a sales award from his work at Nordstrom that included a trip to Florida, which the family had to cancel.
The entire Quinonez family is incredibly thankful for the overwhelming support they continue to receive from the community throughout this lengthy battle that is not yet over. The doctors have explained that fighting this disease is a marathon and not a sprint. As one of the nation’s past top marathon runners and US Olympic Trials qualifier, nobody knows better than Gus how to prepare for such a task. The support Kai is getting from his friends and families in the community is not only impacting all of us now, but also leaving a lasting impact on his generation in the community for the future and many years to come.