Hailey has an older brother and sister. Her older sister has a CHD called Truncus Arteriosus. Because her sister has a heart defect, they did a thorough fetal echo when I was pregnant with Hailey and she was diagnosed before she was born with a CHD called Tetralogy of Fallot.
At about 10 weeks old, we took Hailey to Edmonton for heart surgery. They had waited until she was a bit bigger to do surgery, but couldn’t wait too long as her blood oxygen saturation would keep getting worse. We went to Edmonton thinking that she would get a full repair and probably wouldn’t need another surgery for quite a few years.
The day before surgery as they were doing the echo and other pre-op tests, they discovered that Hailey had a tumor on her adrenal gland. They decided to go ahead with surgery the next day, but to do what is called a BT shunt instead of the full repair. This would help her body cope better and get more oxygen, but was only a temporary fix until they could figure out what was going on with the tumor.
We waited in Edmonton for a week or two after surgery. Then Hailey had an abdominal surgery to remove the tumor. They said it was about 5.5 inches across! I don’t know how that big thing fit in her little tummy, but we were so glad they got it all out. They discovered that
the tumor was cancerous and was called a Neuroblastoma.
Her liver was affected a little, but they were hopeful and said that if the patient is diagnosed so early and they get the main tumor out, 95% of the time everything else fades away on its own with time.
We went back to Regina and saw the oncologist there. We would go in for frequent blood and urine tests, and ultrasounds. Her liver got larger and the cancer was not going away on its own. We had to go up to Saskatoon and Hailey got a port put in so it would be easier to receive chemotherapy.
In March of 2011, when Hailey was 6 months old, she received one round of chemo. Then again in April she received a round of chemo (each three days). We continued to monitor her and in May they saw no more signs of the cancer! We were so happy. Now we just had to wait for her next heart surgery.
Before we had a surgery date, Hailey started to throw up green bile. She couldn’t keep anything down and could not have a bowel movement. We were admitted to the hospital in Regina. They did an ultrasound and found that she had a bowel obstruction most likely caused by scar tissue from her previous abdominal surgery catching on the bowel and twisting it (this is called “adhesions’).
Hailey was taken by air ambulance to Edmonton where they did an emergency surgery to correct the bowel obstruction. She recovered quite quickly and was happy again in no time. However, her oxygen saturations were still low (in the 60’s – most people are high 90’s to 100). We stayed in the Ronald McDonald House in Edmonton for a few weeks and then they got Hailey in for her second open heart surgery.
After surgery, she got something called Chylothorax and had to be put onto a low fat diet for 6 weeks for it to heal properly. At the time, she was solely breastfed and did not like bottles at all, so she refused to take the low fat formula called monogen. I don’t blame her, it smelled awful. They put in an NG tube to feed her. After the first few weeks of doing tube feeds, she got desperate enough that she started to take it by bottle. That problem was resolved and we went back to life as normal – or as normal as we had had in a long while.
Eventually her hair started to grow back in and she remains cancer free to this day. Hailey is now almost 8 and we go in for a yearly cancer check up but things are looking good. She will eventually need a valve replacement and possibly another surgery, but she is able to do so many things other kids her age can do. She loves to swim, play outside, play at the park, do gymnastics and soccer. She is a little comedian and loves music and crafts.
Our two heart warriors have pushed us to be strong and patient and have more faith. Our journey has not been easy, but it has been worth it to see them grow so much and overcome all of their obstacles. They are two of the strongest people I know. They are my heroes.