Life as normal as it can be

Aidan – One Year Later in 2012

Well it has been a year since Aidan was diagnosed with Acute Lymphoblastic Leukemia (ALL) in February 2011.

It all started last February with Aidan being extremely tired and not playing all weekend not even with his Nintendo DS. He managed to go to class at Franklin Elementary School on Wednesday, but called home wanting to go and see the doctor. Luckily, he was able to see Claire Heffernan, our family doctor who recommended a blood test.

Our family still remembers the call later that evening from the on-call doctor at the clinic who told us to take Aidan immediately to BC Children’s Hospital (BCCH). That was the start of a year of major ups and downs for the entire Chin family. Nobody in our family has ever had cancer. The doctors told us that there are no simple answers to pinpoint why some children get it and others do not.  Aidan has one of the most common types of leukemia found in children that is treatable.

It was both frightening and overwhelming for Paul and I during the numerous conversations we had with all the medical staff at BCCH telling us about the different types of procedures and treatments that would follow. We were exposed to a whole new set of vocabulary that included Cycolophosphamide, Mercaptorpurine, Cytarabine, Intrathecal Metholtrexate, Vincristine, Doxorubicin, Nelarabine, Leucovorin.

During Aidan’s first few days in the hospital, he had a Venticular Access Device (VAD) surgically placed down the right side of his neck.  The VAD was recommended because it is the easiest method for administering chemo and doing blood tests on children. The VAD has to remain inside him until the completion of his treatment until late 2014 or early 2015. 

When Aidan had lost 20% of his original body weight, the doctors inserted a feeding tube in him. Since he was being discharged from the hospital, his parents had to learn how to set-up the machine at home for Aidan and learn how to clean the feeding tubes. We went through many bottles of Boost. Unfortunately, the tube was so uncomfortable for Aidan and it affected his speech, he ended up throwing up the NG tube. 

Although Aidan was eventually released from the hospital, he still had to go to BCCH on a weekly basis for chemo treatments. Sometimes, he was there for an hour, for half a day or a full day. Sometimes he went once a week or sometimes he even went every day. Eventually, my parents, Brian and Betty came from Osoyoos and moved in temporarily to help out. This was important as it helped maintain some stability and normalcy for Brandan’s daily routine to and from school. Brandan missed hanging out with Aidan, so sometimes he would come along on the appointments to BCCH. His Uncle Dat would visit sometimes to play video games or bring bubble tea.

Aidan’s aunt Diana had called Franklin and told them that Aidan would be in the hospital and not coming back for a while. One day, Diana got a call that some of the kids had made some cards to give to Aidan. When Diana dropped by, she picked up a pile of cards and 1000 paper cranes made by the kids and staff at Franklin Elementary. These were plastered all over Aidan’s small room at BCCH. Every letter was truly inspirational and creative and helped bolster Aidan’s courage.

Although Aidan no longer attends Franklin Elementary, this school will always be a source of deep strength and affection for our family. When Aidan’s teacher, Stacey Svesistrup organized a fundraiser called “Shavin for Aidan”, we had no idea what a major event it would be. Several of the children from each grade shaved their heads, there was music playing and it was incorporated with orange day so all of the kids were wearing orange.  They made orange baseball caps with the “Shavin for Aidan” slogan.

A few days earlier, Aidan and his mom were expecting to attend the event, but on one of his clinic appointments, he broke out in hives from the chemo treatment and was having difficulties breathing. Three nurses came rushing over and Dr. Lucy had to use an epi pen on him. He had to be re-admitted to the hospital. 

I prepared a slide show documenting Aidan’s stay at the hospital to illustrate what Aidan’s life was like now. Paul, Brandan, my sister Diana, my friend Laura, my cousin Rita and her boyfriend Jake and cousin Terry attended the event.  Paul told me that he was overwhelmed by what the school had done for us especially since Aidan had just transferred there the previous year. In a dramatic turn of events, Tina managed to get Aidan released for a few hours to attend the event but they only made

it for the last ten minutes. Despite this fact, we will always remember that day fondly for the financial and emotional support in Aidan’s fight with leukemia. It was a very uplifting and emotional experience and so difficult to express even now how grateful and inspiring it was to see how the entire school rallied behind Aidan and the affect it had on his road to recovery.

Aidan did return to Franklin Elementary for a few days in June so he was able to see everyone and say goodbye, as he would be not be returning in the fall. He still keeps in contact with his friends at Franklin but has returned to his previous school Chief Maquinna Elementary. The good news is that Aidan will be reacquainted with some of these friends when he moves on to Grade 8 at Templeton this fall. 

Meanwhile in Toronto, Aidan’s cousin Grayson who is the same age as Aidan was enduring his own medical scare in June when he was admitted to Toronto Sick Kid’s Hospital initially due to what they thought was chickenpox. His mouth and throat were so raw and sore that he was spitting up blood. Eventually, he was diagnosed with having Erythema Multiforme it causes internal and external blistering. He was placed in isolation and it took several weeks to fully recover. Fortunately, he was still able to come to B.C. along with his parents, Stephen and Helen. It was great to see the boys spend some time together last summer.

While most kids look forward to the summer break, Aidan had to be admitted into the hospital every other week for up to four or five days.  He had to get a high dose of Metholtrexate (5000ml) that takes about 24 hours to fully drain into him.  At the same time, Aidan was expected to go pee every two hours, so every night the nurse woke him up every two hours.  Since he was on a strict schedule, he was restricted to his room, but there were lots of video games and family and friends that came to help pass them time. Frequent visits from his grandparents (Paul’s Mom and Dad) were appreciated as his Nana and Grampa brought his favorite meal (Chicken Chow Mein).

The BC Cancer Society runs a summer camp in Maple Ridge called Camp Goodtimes put on by the Cancer Society. It is just like any other summer camp with cabins, canoeing, hiking, swimming, archery, etc. except that it is specially designed for kids with cancer. The last week of June, Aidan was in BCCH for his first Metholtrexate treatment and had spiked a fever so his release date was delayed until Saturday. He was anxious to get out as he was supposed to go to Camp Goodtimes with his mom, aunt and brother. Unfortunately, he became nauseous and was throwing up when he arrived at the camp. Besides camp guides who led outdoor activities and arts and crafts, there was also a building called the “Med Shed” with a doctor and nurses. He had a restless sleep and then went straight to the Med Shed and the head nurse said that Aidan was too sick and was sent home. The next 24 hours were no better and the vomiting continued so he had to return to BCCH to administer anti-nausea medication and was so dehydrated that he received at least two bags of fluid through his VAD. Fortunately, Aidan and Brandan were able to return later that summer and attend Camp Goodtimes kids camp together. Despite the rainy weather, they had five days of outdoor fun.

In September, Aidan went back to his old school Chief Maquinna Elementary to be back with his friends since kindergarten but felt a bit uncomfortable about taking off his toque because he was bald.  His teacher Miss Nucich was very perceptive and asked him if he would like to do a presentation about leukemia.  He was eager to work on this project and got all of his props ready and he said that it was a good thing because now his classmates would know what he had and the challenges he had to face.  One kid asked how his little brother was coping with all of this. He said it caught him off guard. He swallowed hard and then answered that Brandan was his best medicine.

The months of September and October were filled with more Oncology clinic visits at BCCH. Aidan lost his hair again from the intensive chemo.  He wasn’t too upset this time because he wanted to be Darth Maul (this Star Wars character is bald too) for Halloween. 

One weekend, I took Aidan and Brandan to Seattle for a food truck rally where there were tons of food trucks all lined up in one area. Coincidentally, the Bricksmaster convention was scheduled for the same weekend. Since Aidan and Brandan are complete LEGO-AHOLICS, we had to go check out the convention at the Seattle Centre.

Other treatments include lumbar punctures in his spine to administer some of the chemo.   Another time, he had to go to Vancouver General Hospital for radiation treatments.  Since Aidan had no adverse side effects, he found it to be an easier method of treatment than getting chemo.  Also, the hospital had to custom fit his face with a thermo mask that he thought was a cool souvenir. The staff even let him use the remote control to rotate the bed he was lying on.

In December, Aidan had started a Maintenance program where he supposed to come in once a month and the rest of his chemo medication could be taken in a pill form at home every day.  Unfortunately, the Nelarabine he had taken brought his counts down and his immune system was extremely low.  He missed school in the beginning of January. At the end of the month, his counts dropped again so he was away from school for another three weeks. 

Life at the Chin house is more or less back to normal for all of us, but Aidan will continue to have treatment for a few more years and then he needs to be monitored for a further ten years to ensure there is no reoccurrence.

For the first week of Spring Break, Aidan is scheduled for daily appointments at the outpatient clinic at BCCH.  Since we had to cancel our family cruise to Mexico last Spring Break, I wanted to make sure that Aidan and Brandan would have a better time this year. We are planning on going to Portland where there are streets full of food carts. Then we will spend a few days at the beach in Lincoln City, Oregon. We are hoping to splash in the waves, go crabbing and clamming, visit the Tillamook Ice Cream Factory, go kiting, and just have loads and loads of fun together.

Aidan has been selected to participate as a medal bearer in the upcoming relay celebrating the Rick Hansen 25^thAnniversary of the Man in Motion tour coming to Vancouver in May 2012.

All the visits, cards and phone calls we received this past year have been a tremendous source of strength for the entire family.  We appreciate all of the support and it is awesome to know that we have such great friends and family in Aidan’s continued battle with leukemia.

Tina, Paul, Aidan and Brandan