William

William was born April 29, 2021! A beautiful, healthy baby! Always smiling, happy, and very attached to Mama! He began crawling at 7 months and took his first steps at 12 months! He reached all his milestones! Around 11 months, he began coughing and occasionally wheezing. I had him checked for pneumonia at his family doctor's office in the spring of 2022. The doctor said he sounded fine, just a lingering cough. I noticed he would wake up with a low-grade temperature of 99 degrees, and then the temperature would drop spontaneously. I assumed he was teething if not pneumonia or earaches! The low-grade fevers would come and go throughout the week. Our doctor assumed William was teething.

In May 2022, we flew to Florida. While there, it appeared that the rest of the family got a bug; we all began vomiting! William was the last one to get it. We flew home, and all the kids went for a second round of vomiting, so we assumed the bug returned! After two weeks, William began vomiting again, and all the kids had stopped! His vomiting continued weekly, then daily, then after every meal! (I sometimes wonder if the pressure in the airplane had triggered something during the flight, hmm)

We continued with doctor's office visits and emergency rooms: 15 visits in the month, and nothing was found, just vomiting. Anti-nausea medication was prescribed. He was checked for pneumonia and RSV and was negative every time. Finally, he was diagnosed with bronchitis and was hospitalized for 3 days. But once his oxygen was stabilized, we were sent home.

At a doctor's visit in June, the doctor noticed his head circumference was bigger and not proportional to his weight. She assumed he was underweight and suggested we take iron to help with weight gain.

In July, I noticed his eye bulging a little. I didn't know what to do anymore. He wheezed, coughed, and vomited! After hospital visits, an ultrasound was done on his bladder, and we discovered his bladder was very full. However, the blood work came back negative for a UTI, and the blood work didn't indicate anything. He didn't have a UTI, but due to his neurological status, his bladder wasn't working. We had a neurological assessment that day, and he was sent home again. No scans were performed.

Finally, on July 6th, he screamed, grabbed his head, and passed out. The ambulance rushed us to the hospital, where William was assessed and sent home 4 hours later. Back at home, he started yelling oddly, grabbed his head, and passed out! We drove to the ER. I roared like a lion and demanded a CT scan! Finally, we saw the tumor!

He was unconscious the entire day. We were flown to Seattle Children's Hospital, where the fluid was drained. He recovered and was himself again, smiling and happy! A week later, the tumor was removed, and after a two-week recovery, we were encouraged to start chemotherapy. We were moved to the oncology unit floor of the hospital.

William kept desaturating on and off during his time there, so we requested oxygen to assist with breathing. We were denied multiple times by the oncology team there. It was hard to watch when he would drop to the 70s, and he didn't even have a nasal cannula! The oncology team pushed chemo; they told us once chemo began, then they could address his breathing. I was furious; I didn't even know who to reach out to. How could a child start chemo when he wasn't even able to breathe on his own! I brought it up multiple times and was denied! I was shocked at how important pharmaceuticals seemed to be a priority versus giving a child the number one thing he needs: oxygen.

We had a good nurse on one night, and she had a respiratory therapist come in when William desaturated. He immediately came in and demanded William be taken to the ICU! The oncologist that night was convincing the RT to keep William there and offer an extra nurse. The RT removed the bed plug from the wall and said he was leaving with William ASAP and taking him to the ICU! We were so glad that RT came to the rescue. He was finally put on BiPAP for the first time in a long time. He slept through the whole night without waking up or desaturating. We were so happy!

The oncology team finally had us start chemo while in the ICU. After the first cycle, William went into a coma due to methotrexate causing fluid retention in the lungs, and he was already struggling with breathing. He was on maximum oxygen support on the vent while in a coma. The oncology team arrived and persisted that we continue another cycle of Chemo! We spoke with our ICU doctor, who agreed with me that William might not make it through the second round if he was maxed out on oxygen support. I didn't know how chemo could have begun when a person is struggling to live. I requested hospice care to step in, and afterward, chemo was not pressured on William.

He came out of the coma, and we got to enjoy the last 2 months with William in the ICU and on a ventilator. He loved the staff that would come and play the guitar, letting him strum the strings and bringing their shakers! He was so happy to see the guitar since his brother played it, and William always went to guitar lessons with his brother since birth. The nurses would sing to him, and he loved it. Since every time Mom or Dad were at his bedside, we sang songs to him, and when leaving the room, the good nurses would most of the time sing a song to him. He had a small ball he loved to throw and listen to bounce. He would be so happy to throw the ball and have someone pick it up. His family was finally allowed to visit, and he was joyful to see his brothers again. In October, an MRI was done and showed the tumor growing, and the size of the shunt was getting bigger and red. The week before he died, he stopped moving completely and closed his beautiful eyes. We continued to lay by his bed, hold his hand, and sing! He passed away on November 14th. He desaturated, and then his heart stopped beating. He went home to our Heavenly Father!

William taught us about love, patience, and endurance. His journey through everything humbled us. We are thankful the Lord gave William to us for that short time, to love and hold, and most of all, to learn what real love is. His smile and giving heart are greatly missed! We would love to hold him again and whisper how much we love him! His brothers and sister miss playing with him. He is a warrior for fighting a battle no one should have fought! Our sweet little William!

William Noah Barokha

April 29, 2021 ~ November 14, 2022