"I went to Sick Kids yesterday, and I wanted to let you know that I missed you guys. I miss the hugs, the tears, the Kleenex and the chat. While I completely understand why you are no longer there, I wanted to make sure you were also aware how much those moments together meant to me as a parent." [sent during the COVID-19 pandemic]
Sebastian Alfaro Sanudo
“Hello everyone, my name is Sebastian Alfaro, I’m 11 years old and I’m here representing The Alfaro Family as an Ambassador family. My family is created out of my father David Alfaro, my mother Claudia Sañudo and myself. My father works on Saturdays, that’s why he has asked me to read some words that he wanted to share with you. This is his speech:
‘Our Dear Son Sebastian was always a very healthy boy and only at the end of 2011 we noticed that something was not right. He was diagnosed with acute lymphoblastic leukemia, ALL, on January 31/2012. It was devastating. Finally we met the cruel reality and this tremendous news was forcing us to enter in a new world absolutely unknown for us. Besides the intermediate level of our English, in Mom’s case a little bit less, we needed to face new vocabulary, people, facilities, medicines, treatments etc. We knew a famous quote that reads: “ If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but hope? We had two options, medically and emotionally: give up, or fight like hell”. After we made up our minds, which took us a couple of seconds, we were ready to fight like hell, but we realized that we needed help immediately, and that was when the Ontario Parents Advocating for Children with Cancer showed up with the Co-facilitated Parent Intervention Group, in full harmony with the Sick Kids Hospital. This group ran since March to April 2012.
It was very nice to go to the eight floor of the Hospital, be welcomed with a beautiful smile from Leila, the kindness of Helen and the patience and understanding of Susan, people that treated us with very delicious snacks. In company of the personnel from the Hospital which included psychologists and nurses, we had a very pleasant time sharing experiences with other parents, knowing different ways to deal with the situation, getting the help that we were needing and creating strong links with people and organizations that help people like us. At the end of the meetings we felt absolutely different, much more focused and ready to continue supporting our Dear Son Sebastian.
At every moment we have suggested other parents who did not know about the organization or the group to contact Susan, to go to the meetings on Tuesdays or to the intervention group. We were trying to share with everybody the wonderful experience that we have had and the huge benefits coming from it. It is a shame that other parents don’t take advantage of such a wonderful team.
Thanks again everybody for being here to help get the funds that OPACC needs to continue helping people in need. Trust me; this is the best way to spend your time and money.’
That was my father’s speech. And now, some words of my own. I just wanted to tell you that in February 2012, the first month of my treatment, I could see our regular family bond fading away. Thanks to the OPACC my parents were both able to hear positive comments, to share different points of view and experiences from other parents that have been through all the treatment. In the following months I noticed my family bond recuperating after both my parents went to each of the meetings on Thursdays and left me with our best friends. Let me tell you, that whenever I encounter any member of the OPACC in the hospital they are by far very kind to me and invite me to whichever event or reunion coming up. Their contribution to our family has been amazing. With all that being said, and despite the chemotherapy that I have received during these eight months, and the cranial radiation that I am still receiving, I came here today to support and thank the OPACC.”
"Thank you OPACC for everything you do. It doesn't go unnoticed or unappreciated."
"Thanks for all the great work that you do helping families and children through a difficult time in their lives."
"Thank you for all of your support you provided for our family in our time of need last year."
"Amazing organization helped our family in so many ways!"
"OPACC is an organization that is the first human contact for these parents and children. They are there to listen, for a shoulder, to offer a coffee or tea and a snack. But most of all OPACC is there to help these parents through the most difficult part of their lives."
"Thank you for your continued work providing care and support. You outreach to families who sometimes don't want to talk, who have financial difficulties but don't want to say, have fears and anxieties but don't want to voice. You are just there and that [is] enough, is reassurance - thank you."
"OPACC was there for our family when our son was diagnosed. The tremendous amount of support and love we were shown will never be forgotten. The delicious treats...the conversations and the hugs. OPACC lifted us up when we were down and was always there for us! Thank you for making our very difficult journey a little easier! God bless ♥️"
"Susan, never underestimate the importance of what you do! Personally, you were a huge support to me when my son was at SickKids not long ago. [OPACC] helps so many parents like myself who are otherwise unaware of the many resources available to them while they’re facing unimaginable challenges. Thanks to all of you for shining this important light."
"Thank you for all your support throughout this overwhelmingly difficult time!"
"Every act of kindness, every cup of tea, every tissue, every hug makes such a big difference in our lives."
"OPACC supported us, and it is amazing what conversation from those who get it, shared over refreshments, can do."
"The staff is amazing and have helped us so much, they really go above and beyond!"
"You were there for my daughter and my family while she battled osteosarcoma 16 years ago and won the fight. Thank you for all your help!"
Alexandria F. (Certified Child Life Specialist, Credit Valley Hospital)
"To our friends at OPACC, How can we thank you enough. From the moment your group first began coming to CVH we could feel the impact. You are all such an incredible outlook and beacon of hope for families going through the hardest of times. Thank you from the bottom of our hearts."
"Dear Susan, Thank you for being my angel today. [...] Thank you for the coffee, and really beautiful blanket. The blanket made the green bench so much more comfortable! I'll never forget all these nice gestures you've done over the last few years."
"The coffee service at Sick Kids has been a nice little treat during our clinic days on Thursdays. In addition to offering us coffee and treats, Michelle has gone out of her way to offer emotional support and strength as we navigate through this difficult journey. No words can describe how grateful we are for OPACC and the selfless work done by the Parent Liaisons. Thank you!"
"If I close my eyes I can still see Susan and John’s warm smile each week when I walked into the OPACC room on the 8th floor at Sick Kids. Even though each child’s journey was unique, we spent the better part of 2 years living at the Hospital for Sick Kids with our 5 year old daughter Sarah. Unfortunately, Sarah passed away at the age of 7, but this blurb isn’t about that. This blurb is about the smiles that OPACC provided to me, Sarah and my family. The room was a place to cry, to laugh and to pretend just for a brief moment that we were a normal family in all of the chaos we lived in. OPACC was a refuge of happiness and kindness. My family and I will always remember OPACC and will always be in debt for the way they treated Sarah and our family."
"OPACC supports our parent support group here in Niagara. This is not just a support group. It's my go-to for everything. We celebrate no more chemo together, we cry when there is a relapse, we come together to help a cause, cook dinner for families, sew courage capes, and we lend a helping hand. We laugh together, we raise each other up. Life with cancer is hard, life after cancer is hard too. This group has turned my journey from just surviving to thriving. Thank you OPACC!"
"Thank you for all of the incredibly important work that you do. You make a difference in the lives of childhood cancer families."
"Thanks to each and every one of you for all that you do, and for making us parents feel cared for during our time here at Sick Kids."
"Thank you all for the endless support! We have had some good talks during this drop-in."
"Thanks for the great work OPACC does for children and families!"
“Just want to thank Susan for her thoughtfulness. She is such an amazing, understanding, caring person. Being the only person here with my two year old, Kaeley, (ALL), Susan always look for ways she can help. She pushed my stroller to the ward where I was going. Then she bought me a coffee. What a thoughtful thing to do when you are alone and have no one to help. Keep up the good work, it makes a world of difference to have someone who truly cares.”
"In 2009 during Eric's first battle I was alone, fearful and terrified. I suffered in silence to be strong for Eric who was 9 years 10 months. This relapse, I reached out to OPACC and I am forever grateful to be friended during this journey and supported. I am still terrified but I am not alone! I appreciate the listening ears of Susan, Michelle, and Karen more than words can say. I appreciate the coffee/tea mornings so much that the simple gesture can make one's day during a storm of chaos. Forever grateful to OPACC."
"God bless you for all the support that you give to childhood cancer families."
"I really do appreciate all support given to families like mine during these difficult times."
"[...] Thank you for your amazing support and understanding. You were always patient and listened to the good and the bad. We appreciate your optimism and beautiful smile that greeted us when we saw you. You and Susan helped us navigate the scary world of cancer and have made it less intimidating."
"Really appreciate all you guys do for us! Thank you from the bottom of our hearts!"
“Hi, we met Susan in the middle of our treatment (ALL) she was great! Offered so much information and compassion that was needed. For that we thank you Susan and OPACC.”
“To Suzi Kuczynski and John of OPACC….thanks for being there every time I needed you. True, I didn’t meet you in the best circumstances but I am very glad I met you two. Thanks to you I feel a little less lonely in a country where I have been only for 3 years. OPACC is wonderful and credit goes to you guys.”
“Good day to you all. I am very pleased to be here today and to be able to say thank you to OPACC for everything they have done for my family.
In 2010, when Anthony was diagnosed with a low grade brainstem tumor, we were not prepared for all of what transpired. I felt lost and in a world of the unknown, we were not prepared for all of the events that transpired and it was like being in the zone. I felt overwhelmed and alone and confused and was in a state of shock and disbelief at how much our lives had changed, like we were spiraling out of control. At this time, while attending weekly Chemotherapy that would last for 70 weeks, I met Susan, who from that first day listened and passed on valuable advice. I was crying at every session. She comforted me and was able to advise on all of my concerns from health issues and how to approach the doctors, to problems at school and my work.Through the group meeting on the 8th floor I was able to meet with other parents and interlink nurses and share common feelings and concern and realize that we were not alone.
I learned to accept our situation for what it was and though I still cried, I felt relieved to know that Susan was there to share her time and own personal history with me and overcome most of the hurdles we faced to again emerge smiling and making the best of a situation that is not going to go away. Acceptance that we cannot change the situation but learn to adapt was slow, but now we can live and enjoy each day as a family as never before.
I would like to thank OPACC and all the other groups who have collectively helped my family and other families on this journey and ask that you all continue the good work. We really appreciate it and you all have helped us in so many ways. Thank you.”
“Susan and John are great. They are such a support and help to us through theses hard times.”
“Thanks for all your thoughts and prayers and especially to Suzi Kuczynski who sat with me while we waited for those results. Your support was incredible. While I know God is always there with us, I also know that He put you in our path yesterday to let me know He is always meeting our needs.”
“Thank you so much for being there at the hospital all these weeks and months and years. You have always been such a source of comfort and reassurance for me.”
"Your OPACC hospitality is always a bright spot in what can be some stressful visits to the Sears Clinic."
“Thank you for all you have done to help parents cope through the worst nightmare imaginable. You’re a blessing.”
"Dear Susan, You have been like an angel, like a mother and a great friend for all of us. You have made our days much brighter and took so much of the pain away just by listening to us. [We] are very thankful for all your help and act of kindness. God bless you."
“Susan, […] we met in August after my daughter was diagnosed with leukemia. You have been so helpful and supportive anytime we’ve seen you at HSC. I’m with my mom all the time and my mother in law has been with us too. You were kind enough to call my husband too.”
“Hi John and Susan. I wanted to take this chance to wish you a Merry Christmas and say thank you for offering your support and being there when even a friendly smile in the halls of 8A was all I could accept.”
"I just wanted to say thank you so very much for all that you do. This year was a challenging year, and our family certainly learned a lot."
“I wanted to say how grateful I am for organizations like yours. What you do is amazing and parents like me appreciate your efforts so very much.”
“You are a gift to this world and us Momcologists and Dadcologists. You really are a very special person and a gift to us all.”
"OPACC was there for us every Monday morning and Tuesday evening at Sick Kids. They helped me talk about Mia’s condition and listened with empathy and such wonderful support- John & Sue are the best! God Bless them for their selfless work. They gave me such great advice, helped me sign up for events for Mia and helped me deal with my daily struggles. The coffee and treats were so thoughtful and very much needed. Its difficult to stay strong all the time, especially when your child is suffering from any critical illness, but OPACC helped me deal with my daily and weekly struggles, and I would always leave them feeling a little bit better. They knew what I was going through which is the most important thing. Both John and Sue have lived through this. It was comforting to know that you are not alone in this journey. Yes, you have family and friends to help you, but no one really can understand your emotions and your struggles unless you have experienced them yourself. I got my strength from them. If they were able to continue on and get through their children’s illnesses, then I could too. And, we have been able to get through this."
"Thank-you for the support that you provided my friend and her family when her daughter got sick. I know it has meant so much to her."
“Without the Parent Liaison in place in 2001 (Susan), our family would not have experienced the great support we did and had the understanding we did.”
“The kids are our future. Thanks for helping them.”
“Please direct to Parent Liaison Services. They provided us with a wealth of information when our son was diagnosed with leukemia.”
“I was nominated to do the ALS ice bucket challenge .. instead of donating to ALS, I’d like to donate to OPACC .. Our son [name withheld] was diagnosed with Leukemia this May and I know how much OPACC has helped us during this difficult time .. and this is our way of saying thank you.”
“You do amazing work!”
“A warm thank you to John, the Parent Liason at HSC. Always kind and supportive and easy to talk with. Our daughter had just turned 16 when she was diagnosed with leukemia. It seemed to me that John really understood what Francesca was experiencing. He would often set aside her favorite pastry for when she was able to eat after the lumbar puncture. It was certainly nice to see him on clinic days. Thanks OPACC!”
“Keep on doing what you do. It matters.”
“You guys do an amazing job of supporting all of us in this journey!!”
“Thank you for all that you do to help us! It’s really appreciated.”
"You always have a loving smile and support that goes a long way."
"Keep up your wonderful work! Although somehow we missed you during my son's stay at SickKids, I did find your wonderful website extremely helpful following his treatment."
"Advocacy is huge. How many people desperately need this service from those able to provide it. I feel fortunate to be able to give to this cause. Best wishes."
"You've given so much hope to so many children with cancer & their parents. Please keep up the great work!"
"Thank you for all you do for parents of children who are ill."
"My son is now 19 years old and does not qualify for OPACC any longer. But, I will say that while he was eligible OPACC was a wonderful program with caring and helpful people for a parent to have access to. I can never say thank you enough."
"We thank you for helping us spread the awareness. Truly we appreciate this act and so grateful for all the support - we can't thank enough esp[ecially] to Susan and John, they are the first persons I've met in Sick Kids hospital, very kind, true, caring and informative. Talking to them help[ed] hasten all the worries I had. They supported us in many ways even until Jason's wake. Thank you Susan and John, OPACC. God Bless."
Rae-Lynn N. (OPACC volunteer)
"I am so happy I was able to run the session this evening [Tuesday evening hospital drop-in] as tonight really demonstrated to me how much having these Tuesday sessions mean to the family even if it’s a quick drop by to just say hello and have a quick chat and cup of coffee.
[After experiencing an emotional moment with a parent:] I saw in that moment how powerful these sessions are and even though I have not lived through what she is going through, my presence and shoulder to cry on was just what she needed…someone to listen to her and just be there.
Thank you again Susan for the opportunity for being part of this amazing organization that I believe is making a difference to these parents' experience at Sick Kids."
Gabrielle B. (Principal, St. Pius X Catholic School)
“Roughly three years ago, one of our Grade Two students was diagnosed with cancer. Following surgery, radiation and a year of chemotherapy, this same child – free of cancer – is now a student in Grade Five. In addition to other initiatives, the school community created a fund entitled “Alexander’s Wish” (named after the young boy in question). Monies raised through a variety of drives were directed to support organizations – selected by the student – assisting children diagnosed with cancer. This year, our fundraising is generated through monthly donations requested of our students on those days when the school uniform is not required, but rather, “civvies” are allowed. We have also continued to ask that Alexander identify those organizations that the school will be supporting and he has directed that the Ontario Parents Advocating for Children with Cancer be one. Please find enclosed a cheque in the amount of three hundred and forty-three dollars and thirty-seven cents ($343.37) in support of your organization. On behalf of the St. Pius X School community (students, staff and parents), I thank you for your work and effort on behalf of children like Alexander.”
“We’ve been invited to share a few words about how OPACC has helped us over the last year and a half and in our minds, the word “help” doesn’t even begin to scratch the surface. OPACC is an organization made up of parents, friends, and family who have walked our paths before us. This is exactly what sets them apart from other organizations. They know and understand our journey when most of our loved ones cannot. They anticipate our needs before we anticipate our own. Meals have come without asking and were a welcomed relief. Conversations were easy and without judgement. And friendships grew in the most unexpected ways. John, in particular, can always find a way to make Sachi smile through jokes or play. Over the span of a year it’s been quite amusing to see how the two of them have learned to greet one another by sticking out their tongues! These are the relationships which have eased our minds and helped us feel “normal” again. There were moments at the hospital where our minds would head towards the dark side and without our Parent Liaisons, our journey could have been much longer and darker than it was. The support offered by OPACC has been invaluable to our family and so many other families whose lives this humble grassroots organization has touched. If that’s not enough, OPACC’s compilation of resources has kept us organized, taught us how to manage our emotional rollercoasters, and have kept us informed of events where we could go and have fun with the family in a safe zone. Families touched by childhood cancers are such a small community and OPACC has a vision to do so much more. It’s important that we all stay connected and support these kinds of initiatives in order to pay our experiences forward.”
View additional Video Testimonials from parents here.
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