Tuesday, September 10, 2013

Isaiah's Story

Our life was pretty much perfect until we experienced a very tragic loss. My husband and I both retired from the Army in June of 2009, we were both on our second careers working for the Army as civilians. We had 3 grand-babies and finally one of our children wouldn't have to move schools every couple of years while we changed duty stations. Four of our five children were adults and our baby boy Isaiah was starting the 1st grade. My husband and I both have 2 children from our first marriages and Isaiah is the only baby we had together.

My beautiful 6 year old son Isaiah started to have a cough at the end of August, so on Sep 3, 2010 I took him to the Doctor for that cough. They reassured me that it was just allergies so they prescribed him Zyrtec and sent us on our way. I will never forget what that Doctor said to me that day. "Mrs. Alonso, all we can do for Isaiah is give you advise…he has allergies which is very common in Kentucky". This is video of Isaiah from that day...

Well, less than 12 hours later a loud thump woke us up, it was my Isaiah collapsing in our hallway. I picked him up and noticed his lips were turning blue, so I yelled for my husband who started CPR while I called 911. The EMS were there within a few minutes and took over. They couldn't get a breathing tube inserted so they picked him up and rushed him out and we had to follow in our vehicle. (They wouldn't let us ride with them.) Once at the hospital we were led into a consultation room and were met by a chaplain. We had no idea what was going on but being sent into a room with a chaplain is never a good thing. A while later a police officer came in and told us that they got Isaiah’s heart beating again and once they had him stabilized we could go to him but he was very critical. We had no idea what happened…heart attack? Allergic reaction to the medication he had been prescribed that day? We were clueless. We finally got back to the trauma room and my baby was hooked up to every machine with tubes everywhere. They were asking us tons of questions, like if we had heart disease in our family etc, etc. The x-ray showed something huge around his heart at this point they were thinking an infection of some sort. So they prepped him to be life flighted to Kosair's Children Hospital in Louisville, KY I was able to fly with him while my husband had to drive. Once there they took Isaiah for a CT scan and got him situated in the Pediatric Intensive Care Unit (PICU). Finally after awhile we were brought back and told us that our son had a massive tumor in his chest, most likely cancer but due to the collapse Isaiah had suffered severe brain damage from lack of oxygen to his brain, so he had two serious life threatening illnesses with the brain damage being the worse of the two. WHAT???? How do we go from him having allergies to him having cancer and brain damage? So we had to wait 72 hours to see if the swelling in his brain would go down and then determine the amount of brain damage. They did a biopsy of the tumor to determine the type of cancer, it was T-Cell Lymphoblastic Lymphoma the tumor in his chest was causing the cough and it ended up cutting off his airway and literally choking him to death. Isaiah didn't act sick other than the cough… he was fine. He still went to school, played, ate and did everything he normally did. We had no signs.

So when we hit the 72hr mark, Isaiah was still unresponsive. So they did an EEG to determine if there was any brain activity, which there was very little they told us at best he may be able to breathe on his only and that would be about all. So they began to talk to us about Palliative Care, at this point there wasn't much they could do to treat his cancer other than a steroid though his IV which was shrinking the tumor some, but Isaiah’s body wouldn't be able to handle the needed Chemotherapy. The Palliative Care team was an amazing team of doctors, nurses and social workers who helped guide us in the best medical decisions for Isaiah. We made hand molds of Isaiah hand being held by me and one of my husband and Isaiah. They made books for Isaiah’s nieces and nephew that has his foot print and hand print in it. On day 6 Isaiah started having a hard time breathing while on the ventilator. All of our family surrounded Isaiah’s bed for hours, not sure if it would be his last breath but then the ventilator would kick in and he kept breathing.

The next morning, my husband and I decided it was time to have them remove the breathing tube to see if he could breathe on his own. I hoped and prayed with all I had that he would be able to breathe on his own . Around 5:30 am on September 10, 2010 we told them it was time to take the breathing tube out. Sadly Isaiah couldn't breathe on his own, and he passed away in my arms at 6:05 am September 10, 2010.

Isaiah was a true superhero and would often be seen wearing costumes of his favorites, especially his batman costume. He also loved to dance to MJ songs. Isaiah had a contagious smile that would brighten any room and was truly loved by all who were lucky enough to have known him.

Three years to the day later and I am still in shock of all of this really. We were so clueless to childhood cancer. Shortly after Isaiah passed we started a nonprofit organization in his memory The Isaiah Alonso Foundation. Our mission is to raise awareness for childhood cancer and to provide financial assistance to families of kids with cancer. Together we can make a difference, helping one family at a time! Since September 2010, we have been in the fight trying to raise awareness but it is so hard to get people to pay attention unless it hits them like it hit us. Did you know that September is Childhood Cancer Awareness month? Did you know the ribbon color is Gold to represent Childhood Cancer? Did you know that on average 46 children are diagnosed with cancer every school day and 7 children die daily from it? I had no idea before September of 2010 of any of it. What I would love is for Childhood Cancer to get the awareness and federal funding that it so desperately needs. Tomorrow is not promised to any of us, it can happen to anyway.

Our Isaiah is forever 6, loved and missed more than imaginable.

T-Cell Lymphoblastic Lymphoma
April 26, 2004 - September 10, 2010


Anne B. said...

God bless this family for their hard work in raising awareness. This is the same cancer that took my daughter and while not quite as suddenly it was still a complete shock. We can't rest until pediatric cancer has the same "fame" as that PINK ONE. GO GOLD!! Thanks Renee. (((BIG HUGS)))!!

Elizabeth said...

While Isaiah was clearly very sick, I just want to reassure all readers out there that a visit from a chaplain doesn't mean ANYTHING specific. I am a hospital chaplain and when I am working in the ER, I respond every time a patient is brought in by ambulance. My goal as a chaplain isn't to be the bearer of bad news, but to be available to the patient, family, doctors, and nurses for whatever their spiritual needs may be in that moment.