^^Angel Hayden G.^^ - Quilt Finished in 2005
Born: June 4, 2006 - Passed: February 25, 2009
Illness: Acute Myeloid Leukemia
A Thank you from Hayden's Family!
Written January 4, 2009
Hayden did receive his quilt and it was beautiful. Hayden is doing WONDERFUL at the moment. It was so precious when he saw it, he grabbed it and snuggled it right away. Of course with his fragile state, we wanted to wash it first before we let him actually have it and he was so upset when we took it away. It is nice to know that he will be snuggled up in prayers and is thought of all over the country and even the world! Thank you ladies, for this quilt and also for what you do to put a smile on people’s faces. May your New Year be filled with love and peace.
Andrea and Hayden
Hayden's Story
Written by mom Andrea
Hayden Alexander was born on June 4, 2006. He seemed to be a very healthy baby. He weighed 8lbs 5oz at birth and was 20in long. He looked exactly like Daddy, and everyone knew it. Hayden was a strong baby, even from the get go. I remember we were still in the hospital with him and he was already lifting his head. This being our first child, I didn't think much of it, but the grandparents and Auntie Jennifer thought this was amazing. Apparently they don't usually do that. :)
When he was born, the doctor's told us he was jaundice. They started running tests to see where his bilirubins were at. The first test they ran showed a very abnormal bilirubin count. While most children are born jaundice, usually their bilirubins are only high before they pass through the liver, Hayden showed they were high after they passed through. This caused the doctors to pay very close attention to his counts and they ran a complete blood count of everything (CBC). They did this a total of 3 times. Each time they did, the test showed the same thing, that the first test was wrong. He was jaundice, but not this abnormal type. However, they also discovered that Hayden was lacking neutrophils. Neutrophils are a certain type of white blood cell that fights of bacterial infection. This condition is called neutropenia. Hayden had nearly none of these cells, he had 1%. A normal neutrophil count could be anywhere from 16 - 60%.
At 3 weeks old they performed a mini operation and extracted bone marrow from Hayden's lower back (hip bone). They studied this under the microscope and also sent it to other labs for tests and things. They tested for Kostman's Syndrome and for Leukemia at this time and both came back negative. They could not put their fingers on what he had, but they knew that something didn't look right with his bone marrow. They gave Hayden a drug called GCSF or Neuprogen. Neuprogen is a hormone that your body needs to produce neutrophils. This added push helped Hayden's neutrophil count shoot through the roof. With such a nice responce from the GCSF, the doctors had high hopes that Hayden would grow out of it eventually.
As the months went by, we continually went to Kaiser to get CBCs and to check on his counts. If he was low and sick at the same time, we would inject him with the GCSF. This seemed to be working until this last time. Hayden was sick and had an ear infection and we took him in. We gave him antibiotics for the infection and it cleared it up. A month later I went in with him because he was sick and running a fever and the doctor said to give him the shots just to be on the safe side. He responded to the shots, but not as well as normal. A week later, I suspected another ear infection, which he did have, and at that time the on call doctor sceduled another bone marrow extraction. In doing this, they found that Hayden has Acute Myeloid Leukemia (AML).
We came to Kaiser about the ear infection on January 21, 2007. Two days later, he was diagnosed. The doctors said that when they looked at the bone marrow the first time, he didn't have Leukemia yet. It was pre-Leukemia.
Since his diagnosis, he has endured multiple rounds of chemotherapy and three relapses. In March of 2008, he received a bone marrow transplant. Until about 4 weeks ago, the prognosis was beautiful. We found out that Hayden relapsed on October 27, 2008. We were sent home on hospice and started planning his funeral. The cancer had come back with full bore and was in his spinal fluid this time. Doctors administerd 2 doses of a cancer med to make him comfortable. We took him to the hospital to have his levels checked and decided to admit him. He received some platelettes and his qualitly of life improved tremendously. After another dose of the cancer med Gymtusamab (sp?) he is once again in remission. He is headed to Stanfor 12/2/08 for a Tcell infusion that, God willing, will cure him once and for all.
Hayden is an amazing little boy. He has such a will to live and has surpased everyone's expectations thus far. We truly believe the Lord has him firmly in the palm of His hand.
The statistics are not that nice, but we don't believe that matters any. They say that only 1 in 3 survive past a few years. They also say that only 1 in 100,000 gets AML this young. So, if Hayden can be 10 kids in a million to get it, then he can definately be 1 of 3 that survives it. We strongly believe that God hand picked Hayden for this. We knew that when he was born. For, if it were not for a false test, some error made by a lab technician somewhere, we would never have known about his condition. We thank God everyday that we are aware of his illness and that we have great doctors and nurses taking care of him and treating it. We ask for your prayers for Hayden, for that is what he needs most right now. No human power can save him, that is only for God to do.
Update:
Wednesday, February 25, 2009
Hayden is now resting in heaven. He passed peacefully early this morning. We are just updating for all who know Hayden and our family. God bless you all. Let us hold Hayden up to the lord as he enters a wonderful kindom with our father.
