Renzy was born on February 28th, 2008. He was a week early but considered full term and he was a whopping 8lbs. 7oz. He took to nursing like a pro and was a seemingly healthy baby. He was our first baby so we were admittedly unsure about a lot of things (everything)... The first few weeks were hard. He was fussy all the time and only content when he nursed. I didn't know any better and others were quick to chalk it up to colic. However, it seemed he was always getting sick. If it wasn't an ear infection it was thrush or, at one point asthma. He also developed a bluish growth on his tiny little hand that made it sometimes impossible for him to make a fist. We were confused and concerned and not sure if we were doing something wrong.
One night my husband got off work and I had fallen asleep with Renzy right next to me. I woke up and realized he was hot to the touch. Not just warm but hot! Our thermometer of course wouldn't work and my husband ran to the store to buy a new one (at probably 2:00 am). When we were finally able to check his temperature, it was 104.3! That is HIGH for a 3 month old baby. Of course I was crying and we rushed him to the ER at Pioneer Valley Hospital. They got the fever to come down and did some blood work. They concluded that he was severely anemic and would have to go directly to Primary Children's Hospital. We were told he could go by ambulance or we could take him if we promised to go straight there. They told us "they'll be expecting you".
Getting there was a blur... I remember them taking us straight to the fourth floor, immunocompromised section (ICS). We were told what it could be and what it looked like but they'd have to do more tests... after having to go through his scalp for blood they decided it was time for a picc line in his arm which would soon turn into a central line in his chest. After a couple days of wondering and worrying, we were given the news. "He has leukemia". It was Acute Myeloid Leukemia to be exact and required intense and immediate chemotherapy.
Over the next nine months we spent more time at the hospital than at home. Our 3 month old baby underwent numerous bone marrow aspirations in his back, several central line placements, a biopsy on his tiny hand, 5 brutal rounds of chemo, 4 straight days of twice daily full body radiation, and finally, a bone marrow transplant. After transplant, he went two solid months without food. Two months. Almost 25% of his short little life thus far. He had to relearn to suck and we used a syringe to feed him. He spent his very first Christmas and his first Halloween in the hospital. This is not how we imagined his first year of life. But, we are grateful for every year after!
He deals with many long term side effects even now and will most likely be sterile forever. It is a small price to pay to have him here with us but after seeing the suffering and pain first hand and knowing that he is one of the lucky ones absolutely breaks my heart. We have to do better...