Cody's story was written back when he was added to MACS as a "Featured Kid of the Month". He passed away on August 18th, 2005.
Cody's Story
written by mom Eleasha
Cody was born healthy and big, only one day early and weighing in at nearly nine pounds... He was a rather quiet baby, never cried much, we actually called him squeaky in the beginning because he squeaked instead of crying.
Throughout his first three years he was developmentally advanced with no signs of any type of disease. He walked early; he talked early and even had an adult understanding of many things much earlier than he should have. When Cody's father and I separated, his father moved to Missouri from Florida so Cody was a frequent flyer before the age of 3 and a half, when he was diagnosed.
It all began in the beginning of October 1999. Cody had been battling what was diagnosed as an ear infection. He was being treated with general antibiotics, as his condition throughout each week would worsen instead of improving. Finally towards the end of the second full week, Cody began to lose the use of his arms and legs... he literally carried one of his arms and would only have enough energy to get up and get his toy before he had to lie back down.
Later at Cardinal Glennon Children's hospital we would learn the most devastating news ever... Cody had Acute Lymphocytic Leukemia... his initial diagnosis was high risk considering his white blood cell count was 82,000... he had almost no red blood cells, only enough hemoglobin, which carry oxygen to keep his primary organs functioning (that's why he had basically lost the use of his limbs) and his platelet count was 5,000... we were blessed to find out when we did.
We started our treatment immediately upon diagnosis on October 30th, 1999. We stayed in the hospital for 40 days and 40 nights... finally on the 41st day we moved from the Induction phase of treatment to Consolidation. Upon our release from Cardinal Glennon we were transported back to my home state of Florida where his doctors were already prepared to begin the next phase of treatment at Joe DiMaggio Children's Hospital.
Just shortly after we arrived in Florida Cody developed an additional "issue" throughout the course of chemotherapy, he developed an Esophageal Stricture (to date they have not figured out why) anyway, what this means is he only has one millimeter of space where he should have 10. He was no longer able to swallow solid foods. He had a g-tube placed for feedings and he still receives the majority of his food in this way (the bright side is all of his oral medications can be poured down the g-tube, so no arguing about taking meds, hooray!) For the next 3 years we would continue our treatment POG protocol there at Joe DiMaggio with little or no real issues... we were blessed!! In May of 2002 we completed our treatment.
We had started a new family now, I had remarried and Cody was to be a big brother in July. My husband is in the Navy and so as a family we decided to move to Virginia Beach. My husband left before us to prepare the way and get our new house in order. We were scheduled to follow him on August 21st.
On August 19th, Cody was scheduled for a routine monthly check up, it was at that time that I found out that my son may be in relapse... at first we hoped for a hernia, but that was negative... then we hoped for an infection... we were given the okay to move anyway on antibiotics awaiting the results of the labs. The results upon our arrival at our new hospital the Naval Medical Center Portsmouth were negative... He had relapsed!
From there we started over... the prognosis was explained to us and we had hope, but this new news was hard to handle! Cody had a normal year of school in Kindergarten (well as normal as can be expected with weekly chemotherapy) but starting 1st grade would prove to be next to impossible. Since there was no treatment protocol that pertained to our specific diagnosis, our doctor was forced to use a CCG protocol for normal relapses and then being the awesome physician that he is... he went on to figure out where how and what we could do to increase our son's bleak prognosis of little more than 40% with chemotherapy only.
We were consulted regarding radiation... we underwent many new biopsy procedures and spinal taps (again) and with new treatments he lost all of his hair again and this time would prove to be more difficult. In October we received word that a Bone Marrow Transplant would be Cody's best chance increasing his recovery rate a full 15-25%. Unfortunately, there were no family matches and so we were placed in the National Bone Marrow Registry. Within a very short amount of time we found out that Cody had two unrelated cord blood matches, so our new journey began.
On November 10th, 2002, we boarded an Angel Flight from Norfolk to Raleigh/Durham and we have been here at Duke Medical Center undergoing work ups and treatment since then. Cody received his transplant on New Year's Eve and after an extremely rough road, he is doing remarkably well.
Mind throughout this whole cancer treatment ordeal, he has had to undergo procedures in an effort to widen the stricture in his throat... as he explains it: "it's like a web in my throat and things get stuck there". So they have tried to open the space up but have not had any success...our greatest triumph in that area was here at Duke when he was able to swallow solid food for about two weeks before the opening went back to its normal closed up size (he loved that... I would too, considering the kid hasn't had any real solid food he could swallow in almost 3 years).
Cody is a true fighter... he is a blessing... he continues to smile and stay positive through out this entire ordeal. On the hospital ward we have experienced with other families many losses, but amidst everything, Cody informed me that he was going to make it.
Cody is a winner... we know that because in his heart and in his mind he has already won.
