Tucker’s family:
Mom-Dawn Anderson
Dad-Shaun Anderson
Sister-Sheyenne
Grandmother-Kim
We were blessed with the birth of Tucker Layne Anderson on March 22, 2004. He appeared to be a healthy little bundle of joy. He brought us so much joy and “had a smile that could melt an iceberg.”
In August 2004 at 4 months, Tucker developed a fever and began the normal protocol for treating a virus. This continued for 3 weeks with various antibiotics, but he could not shake the fever. When I took Tucker to his third appointment to discuss switching antibiotics; I just had a gut feeling something wasn’t right. I requested the doctor draw some blood. When the Doctor reviewed the test results our lives turned upside down. He said it could be Leukemia, but we would need to see an Oncologist to determine the diagnosis. He made an appointment for Tucker at St. Louis Children’s Hospital and sent us straight there. I could not breathe as I held him in shock.
When we arrived at Children’s they had a room ready for him and began testing. As the days progressed the fevers continued. His spleen and liver were enlarged, at one point they discussed removing his spleen. One week went by with no official diagnosis, the unknown was taking a toll on us. The doctor decided the next test would be a bone marrow aspiration followed by a liver biopsy.
Finally, when the tests came back, we had our answer, HLH (Hemophagocytic Lymphohistiocytosis) known as Histiocytosis Disease. Tucker immediately began the treatment protocol for HLH 94 along with a search for a bone marrow donor. The disease quickly affected his body causing him to need many blood transfusions, platelets, and non-stop hospital stays.
More testing revealed another problem, Tucker had LCH (Langerhans Cell Listiocytosis) also. At the time there were only 20 other people in the United States that had both HLH and LCH.
Bone marrow transplant day was scheduled for February 9, 2005. Tucker was 11 months old, he breezed through the transplant with no complications. This was an extremely difficult time for our family; our home was two and a half hours away from the hospital. My daughter Sheyenne was five years old and in kindergarten. Grandma Kim and I would stay with Tucker and Shaun would stay home with Sheyenne.
We had an apartment at The Ronald McDonald House, a few blocks from the hospital. This became our home away from home, where we spent 100 days post-bone marrow transplant recovery. There, Tucker learned to crawl, walk, talk and be a “normal” little boy. He could be outside his room but had to always wear a face mask. He would rather be out strolling the halls or playing in the garden and spent many days at the St Louis Zoo.
On Memorial Day (day 102) Tucker began running a fever, so back to the hospital for more testing. The LCH decided to rear its ugly head again. My heart began to feel hopeless; I did not want to start this whole process over! He had just started feeling better and we thought our lives were close to becoming normal again. The doctor was concerned about the relapse and the risks Tucker faced. All our options were discussed at length and we started the LCH protocol including more testing, another bone marrow aspiration, blood transfusions and platelets.
I cannot say enough about the staff at St Louis Children’s Hospital. Doctors, nurses, physical therapist, and other parents became part of our family. Watching these children fight these ugly diseases was heartbreaking. When the Doctors and nurses came into our room, he greeted them with a smile, his favorites a hug. The staff nicknamed him “little man”.
There was a team of five or six doctors consulting on what was best for Tucker. All discussions were leading to another bone marrow transplant, which would be extremely risky. Shaun and I were very uneasy and wanted another opinion. Aunt Colleen attended a Histiocytosis conference in California and talked to Dr. McClain about Tucker’s case. He agreed to see Tucker in Houston. He confirmed that our two options were another bone marrow transplant or to wait out the disease. There were signs of disease in his tummy and colon, so we decided to go with another bone marrow transplant.
In October we decided to bring Tucker home and enjoy some family time together. His big sister took him for walks, rode their small four-wheeler and rode his pony. Being together again was priceless. Everyday we prayed God would heal him and make the disease go away.
At the beginning of December, we were getting ready for bone marrow transplant number two. Again, Tucker breezed through the transplant. This was the hardest Christmas ever. He was isolated in the unit and couldn’t leave. I’ll never forget when Sheyenne came in, he just laid his head on her and gave her a big hug. That Christmas wasn’t about gifts, it was just about being together as a family in a little hospital room.
Tucker was doing so great that he was released one week early. We moved back to our little apartment by the hospital. A couple of days after being released I noticed a white spot on his gum, then a low-grade fever. Back to the hospital we went and from there we knew only God could heal our “little man”. Tucker had an oral fungal (Mucormycosis) infection. From that day on Tucker battled hard and bravely to fight off this horrible infection. To rid him of this fungus he went through surgeries daily to cut away the fast-growing infection along with strong antibiotics. He kept fighting but he also developed GVHD, Graft Versus Host Disease, of the skin and gut. The treatment for GVHD caused the fungus to grow quicker and the treatment for the fungus caused the GVHD to progress at an extreme rate. It was an impossible juggling act that the Doctors tried to balance with little success.
At the beginning of January Tucker was transferred to the PICU floor. I was terrified because that is where children die. We were still holding on to our faith that God could heal our son. Tucker could no longer talk to us because he was on a vent due to the daily surgeries. We could not even hold him because of all the tubes and monitors that he was hooked up to. I sat in a chair and held his hand for almost 2 weeks. We were exhausted.
On January 23rd when the nurse came in for his morning x-ray, I said no. We wanted to see the Doctor, I told him no more. The hardest decision a parent will ever have to make for their child is Life or Death? I know we serve a mighty God, and he would save him if he was meant to survive. No more suffering. I told the staff I wanted a bed brought into the room so I could hold my baby in my arms again.
The next day, January 24, 2006, surrounded by the love of his Dad, Mom, Big Sister, Grandparents, Uncles, Aunts, the staff that loved and cared for him, and the doctors that never gave up the fight, Tucker went to be with his heavenly Father. To walk the streets of gold and sing with the angels; no more pain.
Many people refer to Tucker’s death as a tragedy, but we do not feel that way. Any life is a blessing, no matter how long you are blessed with their presence. Each minute we had with Tucker was a gift from God. Tucker taught us many things in life. He taught us to appreciate life, to save every minute, and not take anything for granted. He taught us patience. There were many days we could only live minute to minute and not worry about the future. Many people rush through life worrying about the future; we now live for the present. Tucker taught us to help others instead of only thinking of ourselves. It is truly amazing how much a tiny little person can teach you and how much impact they can have in such a short period of time. At only 22 months, his courage, bravery and beautiful spirit touched many, giving us the strength to carry on. You see, Tucker had a purpose on earth and although we would love to have him here with us in body, we know that he is here with us in spirit.
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