Jan 12, 2008 Latest post:
Jan 10, 2020
I was referred to Vanderbilt Children's Hospital after a week of hip and shoulder pain. I came into the Vanderbilt Children's ER on January 11, 2008. I was diagnosed with Leukemia (ALL). On January 27, 2010, I RELAPSED with isolated CNS Leukemia (ALL). I would like to thank all my family and friends for their support and prayers. Thank you God for all the blessings I have received.
It was such a shock when we found out that cold Friday night on January 11, 2008. Cole was actually very sick throughout Christmas Break. He had gotten a basketball goal for Christmas and fell on the ball and concrete several times. He had been complaining of pain in his hip. We went to his pediatrician twice in one week. Then he started to have pain in his shoulder. They did x-rays and labs. The doctor called and said the labs didn't look right. She said his WBC was up and he may be developing an infection and if he were to get a fever we should take him to the ER at Vanderbilt. He got a fever within an hour. We went to Vanderbilt right away. They did some blood work and they new he had leukemia within 4 hours. We stayed all night and most of the next day in the ER hoping for them to be wrong or just to wake up from an unbelievably long nightmare. We didn't know if it was ALL or AML until 4:00 the next evening. We were moved up to a room to learn it was ALL (Acute Lymphoblastic Leukemia).
On January 14 he had a port-a-cath put in, bone marrow biopsy, and spinal tap with a chemo injection. The results showed Cole had 82% blasts (leukemia cells) in the bone marrow and 32% circulating blasts cells. Cole started Induction Phase on that day. He did not have Leukemia in his central nervous system. During Induction his blood pressure kept dropping every time he stood. He also had severe jaw pain from the Vincristin. He had extreme nausea. He was unable to eat or drink. By the end of the seventh day he was considered a rapid early responder to chemotherapy. He had less than 5% in the bone marrow. By Feb 12 he was at 0% blasts cells in the bone marrow.
The next phase, Consolidation, he mostly was nauseous with vomiting and had jaw pain again. He had a hard time dealing with his transition of life.
The next phase, Interim Maintenance, he had a tough time due to severe joint pain and pain in his lower spine from the steroids and vincristin chemotherapy. He was also admitted for fever.
The next phase was Delayed Intensification. Cole was admitted several times for fever during this phase. He also visited the ER for fever twice. At the tail end of Delayed Intensification he had a severe rash that was just horrible. Head to toe, every part of his body, just covered. The bumps all joined together. You could not see any of his skin. The fever was on and off for a couple of weeks. The rash was an allergic reaction to the antibiotic given in the ER. We finally got to finish the last four days of the 6TG chemo and they also added 5 days of steroids by IV for the rash. He has made it through the most intense phases of chemotherapy.
He is now in Maintenance Phase. He has had a numerous amount of spinal taps with many more to go. He has one and a half more years of chemotherapy treatment left.
Cole returned to school in Jan 2009l. He had a hernia repair surgery earlier this year (2009).
***Cole relapsed with isolated CNS (Central Nervous System) ALL, Acute Lymphoblastic Leukemia in January 2010. We have elected to do a study for this type of relapse. He will now start a very intense therapy along with cranial radiation to treat his relapsed Leukemia. It will consist of many inpatient therapy stays.
During his second phase of the new treatment plan Cole developed a fungal pneumonia which he finally overcame with finally finding the right medicine. Three weeks later he had to have his appendix removed, too! Many interruptions during the beginning of this new study protocol. He continued with treatments and is about to do his last round in his third phase. The third phase lasted nearly four months. His fourth phase lasted four weeks. Then, came the BIG phase, Intensification 2, which was supposed to last six months without delays. It was the most intense of all the phases. He then start cranial radiation! He moved on to maintenance. It took Cole several extra months from complications during treatment.
Cole is now in remission for 4 years, and he is off treatment for 1 1/2 years as of March 2014.
His road was a long road, but he was strong and now lives life to the fullest each day.
Thank you for your support!
Thank you, God, for continued blessings. Thank you, God, for giving Cole's doctors the wisdom to take care of him with amazing care.