Makade T. - Quilt Finished in 2006
Born: November 7, 2003
Illness: Hepatoblastoma
Makade T.'s Story
written by mom Michelle
November 7th, 2005 - Makade's 2nd birthday
November 8th, 2005 - Makade had his 2-year checkup with his family physician, Shawn E. She noticed a rapid growth spurt. He had gained 13 pounds in six months and his hands and feet were much larger than that of a normal 2-year old. She also noticed early signs of puberty. After her visit with Makade, she referred us to Dr. Johnson, a pediatrician at Aurora Medical in Oshkosh.
November 9th, 2005 - Makade saw Dr. Johnson and he too noticed the same signs Dr. Ekstrom had pointed out. He also decided to perform numerous blood tests. One of the lab tests showed Makade's testosterone level at 550. (The average testosterone level for a normal 2-year old should be around 20. The normal testosterone for an adult male should be around 400.) He immediately referred us to an endocrinologist at Children's Hospital of Wisconsin - Milwaukee.
November 15th, 2005 - We met with Dr. Tosson, an endocrinologist at Children's. She too, along with a fellow collegue noticed the same signs the previous doctors had mentioned. She decided to perform more blood work to measure his level of testosterone. The lab results showed that in less than a week, Makade's testosterone level jumped from 550 to over 1,000!
November 16th, 2005 - Makade had a previously scheduled MRI at 7 am at CHW. The MRI was performed and was immediately followed by a CT Scan and an Ultrasound. The results were disturbing. We found out that they had viewed a tumor in Makade's abdominal area and he needed to admitted immediately. Makade became a patient on the HOT Unit at CHW. (HOT = Hematology, Oncology and Transplant) We met the attending physician that would be caring for Makade later that evening, Dr. Bruce Camitta. We were in shock. We had no clue of what was actually going on or what was going to be happening. They were asking us numerous questions about cancer in the family, but it never occurred to us at this point that in a way they were preparing us to hear that our son had cancer, as well. We had a meeting with Dr. Camitta, his resident and Makade's nurse. They revealed the disturbing news that would change our lives forever. Makade has Hepatoblastoma. I'm not really sure what all else was said. Hearing our son's name in the same sentence as the word cancer stunned me. But the team reassured us that we were in good hands and they would work fast and hard to save Makade. We also met with the chaplain and a social worker later that evening that proved everyone there was willing to help us in any way we needed it. Both of our parents, my sister and Madisen came down that evening. The next thing that came across my mind... How do I tell my daughter, his sister, that her brother has cancer? What does cancer mean to a 5-year old? For most - death. I'm not really sure how it all was said, but believe me, notifying the rest of your family that your defenseless 2-year son has cancer is traumatic.
November 17th, 2005 - Makade underwent a bone scan to determine if the cancer had spread. Results - Negative!
November 18th, 2005 - Surgery. Makade was taken to the operating room at 8am. They prepped him and we gave him hugs and kisses and went to the waiting room. Dr. Aiken, Makade's surgeon, said the surgery would take a maximum of 6 hours and they would keep us posted throughout. On the agenda... bone marrow aspirations, remove skin lesions (molescum), hopefully remove the tumor and anything else that they encountered once inside Makade. 13 hours later............................................. surgery complete! FINALLY!!! They removed the skin lesions without any problems. (Note: The skin lesions (molescum) are a common skin virus. Makade had had them for some time before being admitted to CHW, but the doctors felt it was necessary to remove them if he had to go through chemotherapy. Chemotherapy kills the immune system and without an immune system the molescum would spread like wildfire.) They resected the entire tumor (the size of a loaf of bread) and the left lobe of his liver. They also removed a couple lymph nodes as a precaution. (If the cancer were to enter the lymph nodes it would progress throughout his body with no cure.) They also removed his gallbladder, because the tumor surrounded it. They also installed a "chemo-port" into Makade's upper left-side of his chest. This would be used to administer chemotherapy, give blood tranfusion and take blood from. With a "chemo-port", Makade would no longer be used as a pin cushion. Dr. Aiken assured us that Makade was quite a trooper throughout the entire ordeal. Pathology results later determined that the tumor was indeed malignant. Chemotherapy... here we come!
Makade would remain in the hospital until Wednesday, November 23rd. He was able to come home the day before Thanksgiving for a week prior to his chemotherapy starting.
November 24th, 2005 - The best Thanksgiving Day ever!!!
December 1st, 2005 - Day 1 of Makade's 1st chemotherapy. Makade's chemotherapy plan is a 3-day treatment every 21 days. In addition he had clinic visits on a weekly basis, in which they administer additional chemotherapy. In total, Makade's plan shows that he will receive four complete chemotherapy treatments.
December 3rd, 2005 - Makade comes home from his first chemotherapy treatment. The following week, Makade became deathly ill and is readmitted to CHW for dehydration treatment. He was in the hospital for three days, before becoming healthy enough to come home and be stable.
December 25th, 2005 - Merry Christmas!!!
December 27th, 2005 - Makade's 2nd chemotherapy treatment begins.
December 29th, 2005 - Makade comes home from chemotherapy. To prevent the dehydration he suffered after his 1st chemo, the doctors send him home on IV fluids that we will administer for 12 hours at night. This helps a great deal. Makade does not want to eat or drink much after chemotherapy, so the IV fluids make up for that can keep him hydrated.
December 31st, 2005 - Makade is taken to the Emergency Room at Aurora in Oshkosh. His chemo-port had infiltrated and the fluids we ran the night before dispursed throughout his body. In Matt's words, "He looked like a water balloon!" We brought him home after they removed his needle from his port and took x-rays determining that the fluid had not seeped into his lungs.
January 1st, 2006 - Happy New Year! Not so much... We had Makade back in the Emergency Room in Oshkosh to re-access his port to administer heparin that his needed to avoid clots in the lines. If the port receives a clot, he would need to go through surgery to have the old one removed and another one inserted. Something that could be extremely risky for a 2-year old.
In the coming weeks, Makade was readmitted to Children's Hospital with a fever spiking at 104.9 degrees. They administered IV antibiotics and performed numerous lab tests. The lab tests showed that Makade was suffering from a common cold. When you are going through chemo, a common cold could potentially be lethal. Scary, huh?!
January 19th, 2006 - Day 1 of Makade's 3rd chemotherapy treatment.
January 21st, 2006 - Makade returns home after his 3-day hospital stay. His again comes home on IV fluids and we run into NO problems!
Today, Makade is doing wonderful! After a large weight loss after surgery and the start of his chemotherapy, he's managed to put on 3 pounds! That's very exciting when at times you thought your child was going to wither away. He has one more chemotherapy treatment ahead in the coming weeks.
Makade will be monitored heavily after the end of his chemo to check for the cancer's return. We hope and pray everyday that it will never come back. He's been going through multiple CT Scans looking for additional tumors and at this point, the results have all been negative - no return! He's also gone through numerous kidney and hearing tests as some side effects of the chemotherapy can be hearing loss and kidney failure. Everything looks great at this point!
Written by Makade's mom Michelle in February 2006
