The Celebrate Our Community event is a benefit, organized by Tricia Schmitt, for Colin Delaney. Colin is an 8th-grader at Springfield Middle School that has recently been diagnosed with a rare form of Lukemia. It’s happening on Friday May 30th from 5pm – 9pm at the Flourtown Country Club.
This fundraiser will assist in the effort in raising money for Colin’s family to help them with their medical expenses. Raffle baskets and a silent auction are available. Tickets for the event are $40 each, and can be purchased from Tricia Schmitt (email@example.com).
Can’t make it? That’s ok. Just donate your old shoes at the Collect4Colin event and spread the word to all of your friends and neighbors.
Many readers may not know Colin, so we asked his mother, Melissa (owner of Giggles & Tickles Toybrary) some questions to have people better understand their situation. Here are her responses:
What are some of Colin’s favorite things to do?
His favorite things are snow boarding, soccer, hanging out with friends, watching movies, playing xbox, sleeping. This is straight from the source. He was bummed his snow boarding season was cut short! It was just the perfect winter for it.
How is he feeling about the diagnosis and whole process?
When I asked, he said “I thought, oh this sucks.” It is not easy, he finds it very painful and tiring. The worst is the mucusitis, which is a chemo side effect of open sores anywhere along his GI path from the in to the out, if you know what I mean. He can’t eat, can’t drink and is it very painful. The whole process is draining. There is not getting away from it or taking a break. With the Burkitts diagnosis the treatment is very intense, with about 2/3 of the time (or more) being spent inpatient at CHOP. So much inpatient time is because with such high levels of chemo, he needs a great deal of support via monitoring for pain meds, IV nutrition (can’t eat with mucusitits), fluids, and other various medicines as well as daily blood count checks. The health of his organs are also monitored closely, to be certain they are handling the chemo as well as they can.
What has kept him and you guys positive through this process?
In Colin’s opinion, he has not been very positive. It has been a daily struggle and he has a hard time feeling so sick all the time. We all have good days and bad days. The bad days are the worst and our family has to fight hard to find the “new normal” in this situation. There is so much we hate about this entire situation. Being positive is made much easier by the community that surrounds us. The constant help and support we receive really does help on a daily basis. Not just physically like the Meal Train but emotionally, to keep us balanced and in touch that things will get better and people are thinking of Colin. It is hard to explain but look at it like this: going to work, a job you hate, every single day (we started this new job back on February 22nd) and getting no days off. We are working 7 days a week, day in and day out, 24 hours a day. The only bright spot are the people around us and for that we are exceedingly grateful. I also am kept positive by Colin. So often he looks to me to see how I am handling things. I have to be positive for him or he won’t remain positive for himself.
How has this impacted you financially?
Financially, this is not something you can easily plan for. Every week we discover some new financial aspect of it. The copays for prescriptions (he has 12 in the medicine cabinet at home), the extra gas, tolls, parking fees, eating at the hospital, supplements, new clothes (he has lost 35 lbs), etc. I think we are lucky, we have decent insurance and in PA, we can apply for medical assistance because of his diagnosis. What I had no idea about is how quickly all the other things add up. The biggest hardship has been my inability to work and have an income. I am very fortunate to have volunteers running the Toybrary right now. I am grateful that keeps the doors open to the public and the business running.
What advice would you give to others that may find themselves in your situation?
Colin said, “Gotta keep pushing and fight through the pain.” There is no real advice to prepare a parent to watch this level of suffering in their child and be unable to do anything about it. I can only advise to another, as weird as this sounds, that you have to embrace the situation. Accept it and figure out how to work with it. There is no changing it, only working within it. I would advise any parent that finds such a diagnosis for their child to realize you won’t be able to work. I originally thought I would be able to work and manage this. But that is not possible. He requires constant monitoring, supervising and communication with medical staff. When you are home, you still go back and forth to clinic almost every day. Medicines have to be administered, foods prepared, vitals monitored, lines flushed, etc. Let go of the stress of work. One parent has to have the full time medical responsibility of being at the hospital and over seeing care. But my biggest advice, don’t borrow trouble. It does absolutely no good to worry or think ahead. Sometimes we can only take it one hour at a time. Most things you think about don’t happen anyway, so why waste time and energy thinking about them?
Is there anyone, or several people, you’d like to thank for helping?
Colin said, “My mom, my dad, my brother, Griffin, Robert, and Liam (his buddies) and grandma.”
For Dave and I it is not that simple to name names. The easiest one to thank is Tricia Schmitt. She was smart enough and kind enough to just “do” for us and not ask. In the beginning we had no thoughts about anything other than the shock of our new situation. We didn’t even know we needed help. She took up the part about thinking of everything we couldn’t think of. Getting the dog walked, cards for Colin, yard clean up (from the storm that had just occurred in Feb), caring for William, meal trains, parking money, etc. It was amazing how she acted so selflessly and crusaded for our well being. She still does.
Laurie Cipolla, with the help of Diane Smith, has pretty much single handed taken over the Toybrary for me and as a volunteer. She has organized a whole team of fantastic ladies that keep those doors open for me on a weekly basis. I still can’t think easily about it without becoming very emotional- it is such an extraordinary thing they are doing. This business was a dream of mine and to have it fostered and cared for by so many- it leaves me speechless with appreciation. Heather and Heidi for checking on me every day and making sure that I am ok, not just Colin. For Laurel, Heidi and Peggy for covering birthday parties at the toybrary on the weekend. To Griffin and Robert, who voluteer at the Toybrary every week just because they care about Colin. Griffin has been so beyond his years in caring for and helping Colin while he battles; anything Colin needs, Griffin is there to do. He defines friendship for me and for my son to have such a friend is worth its weight in gold.
The whole community around us deserves a thank you. The cards, well wishes, meal train, flowers on our door, cleaned up yard, care for William- I could go on an on. We may not know the names of each person directly but each person that has helped and cared for us literally is in our daily thoughts. Our appreciation and thanks can never be repaid. That is hard, to get and not to give. People are taught when you get a gift, you give a gift. To only “get” has been difficult, but without it, I absolutely know we would not be doing as well as we are. The Middle School has been amazing in helping Colin succeed at school while struggling with Leukemia. They alleviated the fear of Colin not graduating and have been beyond supportive of his educational needs.
Please come out and join your friends and neighbors in supporting this great cause.