Connor’s Story

Site created on May 31, 2018

We found out that Connor has been diagnosed with a very rare form of cancer called Embryonal Rhabdomyosarcoma. He has been having nose bleeds and sinus issues since the fall and has been treated  with antibiotics and steroids each time.  When he got home from Penn State, we made an appointment with our ENT Dr. Howard Hammer, who after scoping his nose put him on steroids with the hope that what he saw was polyps. He told us if they don't shrink it could likely be a mass. Our follow up visit on Monday 5/21, showed that they didn't shrink and in fact looked as if the mass had shifted. He took a biopsy in the office and on Friday informed us that Connor had Embryonal Rhabdomyosarcoma.  This type is the better of the two possibilities and has a higher cure rate. We had two great appointments at UPenn on Wednesday with a head and neck surgeon, Dr. Jason Newman and a medical oncologist, Dr. Lee Hartner that Dr. Hammer recommended and expedited getting us in to see. We received the best news we could have hoped for that the cancer has not metastasized to the chest, abdomen or pelvic area. We are currently trying to get an appointment with a specialist at CHOP, Dr. Richard Womer who was also recommended to us by two unrelated sources, Dr. Gary Freedman and Dr. Andy Kolb. This particular type of cancer is most common in younger children under the age of 10, but also appears in 18-35 year olds. We are told treatment will be aggressive with chemotherapy and most likely radiation. We are uncertain whether or not he will have surgery because of the location of the tumor.  Needless to say we were completely devastated by the news, but are encouraged, hopeful and have unshakable faith that he will get through this. We are so grateful for the love, thoughts and prayers we have received from you ! xoxo

Newest Update

Journal entry by Linda Welles

I've started this post several times and keep rewriting it because I don't want it to come across too negative. The truth is the last month and a half have been the most difficult part of this whole journey. Connor was treated with both radiation and chemo for six weeks. We drove to Philly every weekday spending sometimes up to 8 hours there and needing great patience when the machine would break down. The days radiation was cancelled only prolonged his time there since those days were tacked onto the end. In addition to this he had a chemo infusion each week and takes an oral chemo 6/7 days a week. He will continue this regimen at Penn State until May. During this time we celebrated holidays with lots of fun family events. Connor was able to get together with friends and also had the opportunity to meet some of the Eagles players at CHOP. On January 17th , Connor rang the bell once again, this time for radiation. 

As expected the effects were cumulative and the last few weeks he has suffered in pain, has not been able to eat normally and lost another 12 pounds. I can't begin to explain how difficult it is to watch someone you love, let alone your child go through this. However, he continues to press on, take his meds, follow doctors orders and have unbelievable strength and determination. Our sweet Charlie never left his side knowing he needed some love. His goal from the beginning which everyone knows has been to get back to school for the spring semester. Last week Doug and I drove him to PSU on Monday and moved him in to his apartment with his friends. We met with Connor's new oncologist, Dr. James Powell and his staff at Mt Nittany Medical Center. Everyone there was welcoming and kind and I'm confident he will be in very good hands there. I offered to go up for his first treatment but Connor wanted to do it on his own.  The transition for Doug and I has been tough, but we know he is exactly where he needs to be. We both could not be prouder of Connor's preserverence and strength to get to where he is today. He will have his first scans when he comes home for spring break in March. We plan to go visit him in February for THON which we are looking forward to. Until then we are all settling in to our "new normal" and look forward to Connor gaining his strength back and enjoying life as a college sophomore . Thanks be to God for seeing us through this difficult time and to our family and friends who have always been there for us. We are so grateful to you all! xoxo
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