Hello. My name is Annie Guérin, and I am the mother of a child with a brain tumour.
I'd like to thank you for this opportunity to speak before you today.
Before I begin, I should state that although I am a federal civil servant, my statements here today are my own and do not reflect those of my employer.
My son was but five years old when he was first diagnosed with his tumour. As you can imagine, my husband and I were shocked and scared and worried about our son. His entire life—and ours—was about to change.
He immediately underwent 16-hour brain surgery to remove the majority of the tumour. Nothing in my life has ever scared me as much as those hours waiting in the waiting room, waiting for news that he was still alive and doing well. That news could not arrive soon enough.
I was so relieved when I saw him awake, but groggy. My heart fell again when he was unable to remember who I was. Thankfully, once the swelling had gone down, his full memory came back. However, because of complications from the surgery, he had to be hospitalized for about four weeks. I stayed at the hospital with him to oversee his care.
Everything had happened in such a rush that we didn't have time to analyze how this would affect our son, our other two children, our marriage, or our finances. Our only concern was getting our sweet little boy back safe and healthy.
Now, I had just returned from maternity leave and had begun a new job. I had no accumulated leave. My employer was kind enough, however, to advance me some time off, but it wasn't enough to cover what I needed. I had to take time off without pay.
Even once my son was discharged and back at home and his chemotherapy treatments had begun, we still needed to take more time off for subsequent appointments with the myriad of doctors and to take care of him when his treatments got to be too much and his system was too weak .
My husband was unable to get any time off from his job, so he had to juggle his demands at work, our other two children, and relieving me at the hospital when it was needed. Unfortunately, the distractions became too much, which caused his performance at work to suffer. He was let go not too long after.
When a child is diagnosed, parents want to do everything in their power to make it better. Knowing that there wasn't much we could do medically, we did our best to provide for the remainder of his needs, but in losing his job, my husband was no longer feeling that he was providing for our family. The stresses on our family were now even greater.
By this time our son's chemotherapy was well under way. The protocol he was on required many at-home drugs, which cost about $600 per month, some of which were not covered by my insurance plan. We were now deep in debt, my husband was looking for work, and our electricity had been cut off. I had to return to work in order to support our family financially, to cover the medical costs, and to get my family back on track.
I realized I needed help to get us through. I began looking into what programs were available and was very surprised to find how few there actually were within the government. Luckily, we had the support of family and friends and charities to help us through our dark times, but that is not necessarily the case for many families.
That's why we need this bill.
Had this option been available to us at the time, my husband could have applied for benefits. We would have had the option to stay at home and take care of our son during his care. We might not have gotten into so much debt. The stresses on our family would not have been as great.
Unfortunately, a year after my son's treatment ended, his tumour had regained strength, and he had to go back on chemotherapy once again. The protocol was different this time; there weren't as many at-home drugs, but the physical effects were still the same. The cycle of missing work, the debts, the stress, and the uncertainty were beginning all over again, not to mention the physical and mental effects on my son and the rest of the family.
I have reviewed this bill and am happy to see that the benefits can be split between the parents. I do have a few recommendations, however.
My strongest one would be that the duration of the benefits be extended from 37 weeks to 52 weeks. Most cancer protocols are between 48 and 60 weeks in duration, at least for the families with whom I have come into contact.
As most of you may know, children's systems are weaker the longer they are on chemotherapy, and so the chances of their getting sicker increase the longer they are on the protocol.
Also, would it be possible to split the benefits throughout the year in order to give the parents the option to take a few weeks upon diagnosis, and then as needed throughout the treatment? You never know when your child is going to get sick, when suddenly they are neutropenic and are going to need to be hospitalized for another three or four weeks. This is not something you can plan for upon initial diagnosis. I would hate to take all the benefits at the early stage and not have any available when they were truly needed.
Also, is there a limit to the number of times you can make a claim? In the event of a relapse, will parents be penalized because they had already made a claim the previous year? That needs to be more clearly identified.
I also believe that the age limit should be increased to 21. New diagnoses among teenagers are on the rise, and I would hate benefits be cut off once a child turns 18.
In the case of Sabrina, I know that she is a teenager, and anything that stopped Nathalie's ability to take care of her daughter because her daughter had lived long enough to turn 18 I would be against.
I would also recommend that the claims themselves be easy to complete. There are so many forms that need to be completed and signed by parents and by doctors and by psychologists and you name it. We don't need another complicated process; we just want something quick and simple and easy.
If you truly want to help parents in need, every measure should be taken to make this process easy and flexible. I strongly believe that this bill should go through, with the amendments of prolonging the benefits, as I mentioned. It is my deepest wish that no one will ever have to use these benefits; however, the unfortunate reality is that it is gravely needed to help our families in need and to help them to stay strong.
In closing, I just wanted to mention that my son is now doing fine and things have somewhat gotten back to normal. I've become much more involved with the charities that have helped us, and my goal now is to help new families that have received the diagnosis.
I'd like to thank this government for finally bringing this bill forward. I would also like to thank you again for inviting me to speak before you today, and I welcome any questions you may have.