5) SickKids Part II

The door to Cujo's Kids where the lumbar puncture procedure takes place

The hospital stay was awful for E, and equally, if not more awful for us. The first few days, E needed to have his blood drawn and tested three times a day. There was a revolving door of doctors, nurses, and support staff coming and going from our room. There is an incredible amount of information thrown at you in the first 48 hours. Between names, faces, drugs, side effects, tests, etc., there is little chance to keep everything straight and filed into memory. We were given a binder, the "Children's Oncology Group Family Handbook" that has everything we need to know about leukemia, tests, treatments, procedures, drugs, etc. Basically a "Leukemia For Dummies" book if I may be so blunt. Our nurses, who were amazing, checked E's vitals every 4 hours: temperature, blood pressure, and heart rate. He hated it, and screamed every single time. We also had to keep track of input/output. We had to record everything we fed him, and our nurses came in to check and weigh all of his soiled or wet diapers. They needed to make sure that he was excreting a certain percentage of everything he ate and drank. If he fell below a certain threshold, he needed to be administered a drug that would increase urine output.

During his stay, he had to have an IV. The problem with an IV and babies is that they tend not to mix very well. This proved true for E, who had to have IV his done five times. 5 times, the IV team had to come up to our room. 5 times we had to help hold him down. 5 times we had to try to soothe him while they poked his skin with a needle to look for a vein. 5 times where we had to listen to his screams and wish that we could do this in his place. The last time he broke his IV was a Friday, and the nurses said that he could just go the weekend without it as long as he maintained a certain level of fluid intake. That proved to be a blessing in disguise since the doctors allowed us to break quarantine and take him outside the hospital for a walk in his stroller on a day pass. On Saturday July 29th, we walked up to Queen's Park. On Sunday July 30th, we walked down University to Queen Street and back. Both trips would have been much more difficult, if not impossible if we had to drag an IV machine along with us.

We were told that at some point during our stay, E would be taken down to the operating room for surgery so that he could get a "port". The port is a device that sits underneath the skin of his right shoulder, and has a tube that connects to the jugular vein in his neck. A special needle punctures the skin and goes into the port. This way, cancer patients can have blood drawn, and chemotherapy administered without the need of having an IV insertion. Twice we were scheduled to have the port surgery, and twice we were bumped. I absolutely completely wholeheartedly understand being bumped so that another child who has a greater need for surgery can have access to the OR. That being said, it is frustrating to have your child bumped after a period of fasting when they're hungry and upset, and they're too little to understand why they can't have food.

On day 1 of chemotherapy (Monday July 24th), E was taken to Cujo's Kids and was put under general anesthetic for a lumbar puncture. I was allowed to carry him into the room and put him down on the stretcher. At this point, E was screaming because he knew that something was about to happen. I'm sure it's terrifying to look around and see a room full of complete strangers wearing surgical gowns and masks. They put a little non-rebreather mask over his face and turned on some sort of gas, and after a couple of breaths, he had relaxed and slipped into unconsciousness. I gave him a kiss on the cheek, and made a teary eyed exit to join my wife in the waiting area. Bone marrow was taken so that it could be tested to determine E's specific type of leukemia. The procedure drew some spinal fluid to test for evidence of leukemia infiltration. They also administered a dose of Intrathecal Cytarabine (chemotherapy drug) to the fluid in the spinal column and surrounding the brain to treat or prevent leukemia depending on whether it was present or not. The results took a couple of days to come back, but E tested negative for leukemia in the spinal fluid which is a good thing. The test on the bone marrow extracted from the lumbar puncture also took a couple of days, and it revealed that E has "standard risk B-cell acute lymphocytic leukemia", also known as B-ALL. This is the most common type of childhood leukemia, and also the easiest to treat. Later in the day, also on day 1, E received a dose of Vincristine through his IV drip. Day 1 was one of the days where both my wife and I stayed at the hospital with E instead of just one of us.

E was also given Dexamethasone, a steroid, on a daily basis to help counter some of the negative side-effects of the other chemotherapy drugs he is taking. I will address chemotherapy and the drugs in a future post.

On day 4 of chemotherapy (Thursday July 28th), E was given a dose of Pegasparagase. Day 4 was another day where both my wife and I stayed at the hospital with E instead of just one of us.

On day 8 of chemotherapy (Monday July 31st), E finally made his way to the OR. He had his port installed, had another lumbar puncture, and was given a dose of Intrathecal Methotrexate into his spinal fluid. The spinal fluid was once again checked for the presence of leukemia, and once again, leukemia cells were not detected. Later in the day, he had another dose of Vincristine, and then we were discharged to go home.

I was more scared going home with my son as a cancer patient than I was bringing him home for the first time as an infant.