On May 2, 2006, Kaeden was diagnosed with Acute Lymphocytic Leukemia or ALL. The previous week Nana Cheryl had noticed a couple of very small bruises. Kaeden cut his pinkie finger the weekend prior and Papa David had a very hard time stopping the bleeding. Nana Cheryl took Kaeden to his pediatrician and he quickly diagnosed Leukemia. Dr. Bryant had Nana rush Kaeden to Sacred Heart Hospital in Pensacola, Florida where he would be in the care of Nemours Children's Clinic/Oncology Group. Kaeden had to have lifesaving blood transfusions that first night.
We met with one of the three Oncologist in charge of Kaedens case. Dr. Assanasen (Dr.Chatchi is easier). He let us know that Kaeden had "the good kind of Cancer." We couldn't fathom what he meant by this until much later. The "good kind of cancer" means that Kaeden has a chance to survive.
The next day Kaeden went to surgery to have a Medi-port inserted under the skin. It is sewn onto his rib and a tube is running to a large vein to his heart. (this is our understanding of it) Kaeden does have to be stuck with a needle every time he has chemotherapy but it does prevent damage to his veins. Kaeden also underwent his first Bone Marrow Aspiration (he has had 9 so far) where the doctors insert a hollow needle into his hip bone and extract bone marrow. They then are able to see how advanced the Leukemia is or how well the chemotherapy is helping fight the leukemia. On May 4, 2006-Kaeden had another surgery where they inserted Chemo drugs directly into his spinal fluid. This is called Intrathecal meds. Kaeden has had fifteen of those surgeries and he continues to have them every twelve weeks. Kaeden is on protocol AALL0331. Kaeden has had many difficulties during the past sixteen months. Kaeden has spent approximately seventy-one days in the hospital. In August 2006 Kaeden has a staph infection that traveled to his blood giving him blood poisoning. The doctors were not sure if Kaeden would pull through this infection but Kaeden was on antibiotics around the clock for 3 weeks. Things then went fairly well in the months of September and October.
On November 1st,2006 Kaeden was having a normal day of chemo. He is seen at the clinic by one of the oncologist. They access his port and draw blood. They send the blood off for test. Then he is given any drugs in the clinic that he needs before being sent over to the Sacred Heart hospital for his Spinal chemo. Everything went well during his surgery but afterwards things turned into a nightmare. Papa and I noticed the nurse called us in rather soon. We never mind because the sooner Kaeden is back in our arms the better we feel. As soon as Nana Cheryl seen Kaeden she said "something is very wrong." Kaeden was bloated, white as a ghost and moaning in a strange way. Papa David grabbed him and held him. Kaedens breathing was labored-barely breathing. For over an hour we argued with his post-op nurse that something was very wrong. We asked for oxygen, we asked for help. Kaedens nurse Jennifer even called to ask where we were and the post op nurse hung up on her. We finally insisted on an anesthesiologist who came and he quickly found the problem. We were now two hours after surgery. The post op nurse gave him an over dose of pentamidine- a drug to protect Kaedens lungs from infections. He was given six times the dose- a full adult male dose. Kaeden was only two years old. Kaedens pulse ox was down to 50. Kaeden was rushed to Pediatric Intensive care. He was well taken care of by the Nemours Children's hospital staff. (They are separate from the hospital) Kaeden was in congestive heart failure. His lungs were full of fluid. His blood pressure was as low as 64/40. They told us they didn't know if he would make it out of this. If his heart didn't fail, Kaedens lungs might. If his lungs didn't fail, his kidneys might. If his Kidneys didn't fail-then we could concentrate on whether or not he had brain damage. For two and a half days Kaeden slept. Finally he woke up. We still don't know if there are any lasting effects from this overdose.
We were hoping things would get better after this but on November 23 Kaeden had a split lip that allowed strep and staph to go directly into his blood stream. He once again had blood poisoning. We caught it quickly so Kaeden only had to stay for two and half weeks this time. We dealt with the cafeteria food on Thanksgiving-giving thanks that Kaeden was with us and he still had a chance to win against Cancer. Christmas was wonderful. Kaeden made it through the holidays with no illnesses but he did start two weeks of chemo therapy December 26th. On January 24th, 2007 Kaeden started Maintenance chemotherapy that will last until September 2009. We take Kaeden once a month for chemo and every twelve weeks for surgery/IT meds. Whenever Kaeden gets a fever of 101 Kaeden must be admitted into the hospital. In May Kaeden got a spider bite while playing outside. It became infected and Kaeden was admitted into the hospital again. On May 18th Kaeden made it to his 3rd birthday. We weren't able to have a birthday party for him because his White blood counts were too low for him to be around anyone. The doctors try to keep Kaedens neutrophils between 1000 to 2000. Whenever his neutophils fall below 500 he is considered neutropenic. Whenever this happens-anything could end Kaedens life. A virus, a spider bite, strep or staph. Things that don't effect a healthy person can really hurt Kaeden. We do all that we can to protect him during these times.
Since April 2007 Kaedens WBC (white blood counts) have been fluctuating dangerously low. We were told last month that Kaeden may have an enzyme that is preventing his body from ridding itself of a chemo drug 6mp in a timely manner. Instead his body is holding onto it longer causing Kaedens counts to fall. From our understanding Kaeden cannot beat Leukemia without the use of 6mp. They sent Kaedens blood off for genetic testing to see why his counts are falling. TEST CAME BACK NEGATIVE
Kaeden was going to start Pre-K for special needs children two weeks ago. He cannot start school now because of the problems with his low blood counts.
Kaeden now is 3 years old. Kaeden has been evaluated and is testing at a 20 month old level. Kaeden is very smart but during the first year of cancer treatment Kaeden regressed mentally, physically and emotionally which is fairly common. During many of the hospital stays, Kaeden had to be sedated because he would try to throw himself out of his bed head first or bang his head non stop till he bled. Kaeden tried to hurt himself every chance he had. Kaeden wasn't able to talk and couldn't share his feelings with us. Kaeden became very angry because he couldn't understand why he was being poked and tested and drugs being given that makes him sick. His only outlet to show his anger was to bang his head. During Novembers illness-Kaeden was sedated twenty-four hours a day. When Kaeden went home he could no longer hold up his head, sit up or walk.
Kaeden now needs Occupational therapy, speech therapy and school to catch him up to his level of learning. We are in the process trying to get those needs met in the home.
On July 21st, Kaeden broke his leg dancing. We were all in the room and heard a "snap" like a pencil. Kaeden had a blanket over him so we really dont know what he did. It is called a spiral break or Toddler fracture-from our understanding the child plants his foot and spins his body but his foot doesnt move. The toddler doesnt understand that it will happen. Kaeden will have to have the cast for 8-12 weeks or longer.
Our struggles have been many but we are enduring. We are very Thankful to have Kaeden in our lives. He has a tremendous spirit and a fight to live. We have faith that he will beat his cancer.
WE WANT TO THANK EVERYONE FOR THE OUTPOURING OF CARDS AND GIFTS FOR KAEDEN. IT IS VERY TOUCHING TO US ALL THAT THERE ARE SO MANY WHO CARE ABOUT KAEDEN. WE ARE VERY THANKFUL FOR EACH AND EVERY ONE OF YOU WHO FOLLOW KAEDENS STORY DURING HIS CANCER TREATMENT. GOD BLESS, NANA CHERYL AND FAMILY
ALSO, THE HOSPITALS ARE IN NEED OF "LIKE NEW" TOYS. CONSIDER DONATING YOUR CHILDRENS UNUSED TOYS TO YOUR LOCAL HOSPITAL. OUTDATED NINTENDO SYSTEMS WITH GAMES ARE GREAT. VHS CHILDRENS MOVIES ARE ALSO A GREAT CHOICE IF YOU NO LONGER HAVE USE OF YOURS. START BY CALLING THE PEDIATRIC WARD. ASK FOR THE CHILD LIFE SPECIALIST. THANK YOU!
