Chase Barclay's Journal
Written Mar 3, 2014 8:48am by Dionne BarclayWe've learned so much along this journey, from medical professionals and from other families who have taken the same journey. One of the words we learned from our Caring Bridge family is "scanxiety." This word describes the feeling of worry and panic and complete unsettledness when facing scans. Though we've known the scans were coming for quite awhile, I don't think we realized that the anxious feelings would intensify by the hour as the day approached. So the weekend was not a relaxing one for us but we are finally here at Kettering Hospital for the PET scan. The process will take several hours as radioactive tracker is administered through an IV and then has time to move throughout Chase's body. Then the actual scan will take place. Seeing familiar faces is comforting, the staff here remembers Chase and they are all very friendly and caring. We don't have an appointment with Dr. Dole for almost two weeks, hopefully he will call us tomorrow with scan results. We will keep our family and friends updated here. Until then, please say a prayer for clear scans.
Love and thanks <3
PS- While we may be fraught with scanxiety, Chase does not appear to be. His only concern is how quickly Dr. Dole will schedule the removal of his port once the scan results are back. He has full faith and confidence that we are looking at positive news. You gotta love the carefree nature of teenage boys! He keeps us moving along the journey, looking ahead, staying focused on the finish line!
Post treatment scans, Round 1
Written Feb 23, 2014 2:31pm by Dionne Barclay
With the 12 rounds of chemo now complete, we have entered the next phase which is regularly scheduled scans and tests. The first round is complete, CT of chest, brain, pelvis, also cardiac and pulmonary testing. We have an upcoming PET scan, hopefully within the next two weeks. We are anxious for the PET scan to offer some peace of mind. The scans looked mostly good (clear) but the chest scan shows something mysterious in the cavity where Chase’s left lung once lived. On the scans there appears to be a sack filled with air or possibly fluid??? Dr. Dole says he has never seen anything like that show up on a scan before. The radiologists at Children’s didn’t know exactly what they were seeing either. So Dr. Dole sent the scans to Chase’s surgeon in Cincinnati. She has not requested an appointment with Chase yet, so we are viewing that as positive news. Dr. Dole said it could be a thin layer of tissue that has filled up with air post surgery, sort of like a balloon. Chase has not has had any scans since late summer so it could have been there for quite awhile. It’s not causing him any discomfort or other problems. There is also a small shape near the very bottom of the lung cavity that looks like a smooth pebble. The scans were done with contrast and nothing “lit up.” Dr. Dole does not suspect a malignancy at this point but definitely wants to know for sure what the scans are showing. The PET scan will hopefully give the clarification that we want. Waiting on that scan is anxiety causing so luckily we have plenty of distractions...
One thing we are focusing on is supporting an upcoming event on campus at Ohio State. The “Your next Step is the Cure” 5K run/walk will take place March 23 in Columbus. We would like to give as much support to this cause as possible. The event is a fundraiser for the Bonnie J. Addario Lung Cancer Foundation. http://vimeo.com/75054783 The foundation’s goal is increase awareness and funding for research and to offer support and education for patients. Lung cancer statistics and facts are bleak.
-It is the #1 cancer killer, causing more deaths than prostate, breast and colon cancer combined.
-Lung cancer research is underfunded and the survival rate has not increased since 1971.
-1 in 14 people will be diagnosed with lung cancer, about 18% of those have never smoked. Another 60% are not current smokers.
We want to help increase the chances of successful treatment for those who receive this unlucky diagnosis.
To participate in the 5K please register with the following link. http://ynsitc.kintera.org/faf/home/default.asp?ievent=1096203 You can join our team, look for “Team Chase” under the list of teams, or just register on your own or build your very own team.
If you are unable to participate, you can support the Foundation with a donation using this link
The Ohio State Women’s Rowing team are the local organizers behind this event. They were inspired to support this cause after a member of the Cal-Berkeley rowing team, Jill Costello was diagnosed with lung cancer and lost her courageous battle after one year. http://vimeopro.com/lungcancerfoundation/jill In her short life, Jill accomplished a great deal and through her legacy the work to end lung cancer continues on. Please help support or promote the effort if you are able.
Baseball season is around the corner, and with that we have another welcome distraction. Chase is determined to be a part of the Yellow Springs High School team. Last year he worked out with the team and played in scrimmages and was diagnosed with PPB just as the season really got underway. Hopefully he will be able to build up enough strength and stamina to play with the team this year. He is lifting weights and Chase tries to carry all of his textbooks in his backpack at all times to help increase his strength. Dr. Dole put Chase back on the appetite stimulant he prescribed early in treatment. Chase’s weight was down to an all time low of 109. At almost 5’8” he falls well below the underweight guidelines. When he hits 119, we can start backing down the megace. Until then we are pushing a high calorie diet! Dr. Dole also wants Chase on the treadmill to increase stamina and rebuild the muscle loss that chemo has caused. Baseball training will help motivate him to spend more time running and walking on the treadmill.
Caring Bridge is another distraction. Sometimes the best way to forget your own troubles is to take a moment and consider someone else’s struggle. The Murphy Family http://www.caringbridge.org/visit/jacobmurphy is an inspiring family who reached out to us via Caring Bridge. They have a tremendous depth of faith and work diligently to keep updated on many families struggling with health crises and call others to prayer during those times. Through them we’ve recently learned about two beautiful girls who fought long, hard battles with cancer and passed away this month. Please send a prayer up for their families as they find a way to carry on through the hours and days.
Thanks for reading, thanks for caring! Hopefully we will post an update soon with positive news from the PET scan. Until then we wish you love and peace and we ask you to keep Chase and the other children in your thoughts and prayers.
9 months ago today...
Written Jan 22, 2014 1:03pm by Dionne BarclayJanuary 22- Today is exactly 9 months since the official diagnosis that put our world into a completely different orbit. On April 22nd, after being admitted to the hospital for a persistent cough, Chase had his initial biopsy of the mass in his left lung in the morning and doctors were immediately certain that it was a malignancy. We were introduced to our oncologist that evening and he showed us scans and narrowed the possibilities to about 6 types of cancer. We waited a couple of days for the pathologist to determine the exact cancer we were facing, Pleuroplumonary Blastoma.
It's hard to say what has been the scariest part of this journey but I'd say the rarity of PPB is high on the list. There are between 10 and 20 cases diagnosed each year in the U.S. and only 40 to 50 cases diagnosed worldwide. The International Pleuropulmonary Blastoma Registry, which is the preeminent resource for PPB, refers to the recommended treatment plan as an "educated guess" due to the small numbers of patients on which to collect data. However, that is just one of the endless list of scary things about having your child's name and the word cancer used together daily. Somehow you learn to adjust your thinking so that you're not anxiety ridden every moment of every day. You learn to move forward in a way that your new mentors, the other cancer families, refer to as "the new normal." Local filmmakers from Y.S. made an excellent documentary several years ago called "A Lion in the House." It's both heart-breaking and honest because you never forget that there is a "lion" living in your house. But you live your new normal because that's what Chase needs and that's what Kylie and Tuck need and in the end it's probably what Rod and I need, too. We go to work and school and appointments and accept lots of love and support from family and friends. We were lucky enough to find doctors and nurses that we trust. They care deeply about their patients and have guided us through this with calmness and certainty. Chase has responded pretty well to each step of the treatment. We've had a few bumps along the way, like shingles diagnosis last week, which caused chemo to be postponed...much to Chase's delight. With hindsight we know realize that onset of shingles is most likely what sent us to the ED with a fever just before Christmas. But overall things have gone according to the treatment plan/educated guess.
Which brings us to today, exactly 9 months after diagnosis. Chase is currently at Children's receiving his 12th and LAST chemo. He got hydrated very quickly and we actually started treatment at about 11:30. We should be leaving here around dinner time. Since this is the last chemo, we've had visits from a few hospital friends that we haven't seen in awhile. Everyone is telling Chase congratulations, and he is in a slightly better mood than on the normal treatment day. He continues to amaze us in a thousand different ways. Somehow he finds humor in the ridiculous, repetitive steps of the treatment process. He already had me laughing so hard I had a coughing fit today. His 16th birthday was January 3rd but even now at 16 I don't think he has the perspective to realize just how amazing he truly is. He just seems to take it all in stride, with an occasional grouchy mood but never a moment of why me, at least not out loud. So from here he will begin a regular cycle of many scans and monthly port flushes. If all goes well his port will come out in a few months.
Karen from Special Wish is working on something for Chase. We look forward to whatever they are able to work out! We were able to head out of town for a week after Christmas. We mostly just hung out in a lovely rental cabin from www.moosecreekcrossing.com Grandpa Larry, Grandma Jeanine, our nephew Ethan and Kylie's friend Zach went with us. We avoided town except for watching the Christmas show at The Dixie Stampede. We just did a lot of relaxing, the highlight was playing a new game we got called Telestrations.
At this milestone today, more than ever, I want to say thank you to our friends and family for continued prayers and support. We love you! More news later...