- Name: Ryan
- Location: Athens, Ga, United States
Our son Ryan was diagnosed with stage 4 Neuroblastoma in 2004. In 2007, my wife Missy was diagnosed with stage 2 triple negative breast cancer. On July 8th, 2009, Missy lost her battle to this horrible disease. 2 days later, on July 10th, Ryan also lost his. Together forever, they both watch over our family now from the heavens above.
Below is our families journey through Ryan's treatments, along with the joy and laughter we tried to instill into our daily lives. Those days helped us all cope with the pain and suffering that comes with cancer and it's deadly treatments. Both Missy and Ryan endured high doses of chemo, radiation and surgeries. Over 150 nights spent in the hospital and many, many more days. More transfusions than I could count. Yet both Missy and Ryan took on each day with a positive attitude and warm smile for all their friends. We miss them terribly. They will always be a shining light in our lives.
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Monday, May 26, 2008
We have really enjoyed the weekend here at home. Today is our 18th wedding anniversary, and we had a nice quiet day with the kids. Ryan's buddy, Matt, and his sister and cousin Nick, spent the day with us around the pool. The nurse comes in the morning to access Ryan. His Temodar won't be in at Publix until around noon, which is a bummer. We can't get him started until the afternoon. He has less nausea (like none!) when he gets chemo early in the morning. We'll be able to back it up to early a.m. for the rest of the week. He wants to make sure he can swim in the swim-meet on Saturday morning. I guess we will be de-accessing him, which is a little unnerving (at least for me-probably not for Les). He had a great week last week. He didn't miss a bit of school. Friday was his Field Day which is always fun. The picture is from the Science Expo at school. His group did a very fitting experiment for little boys about producing gas! Only two more weeks of school!! Woo-hoo!!! Only three more weeks of radiation for me. Another woo-hoo!! That should be the end of my treatment. I still have some reconstructive surgery to go, but I will be so glad to be finished with all the treatment. We know that all of Ryan's info has been sent to Sloan so we are just waiting to hear back from them about him getting the 8H9 antibodies. The doctor that oversees that study is Dr. Kramer. She was in Japan last week presenting on this study at the Advances in Neuroblastoma Research (ANR) meeting. We are hopeful that we will get confirmation that he can participate and some sort of schedule for us to travel to NY. Please say prayers that all goes smoothly, and of course, that Ryan continues to feel well and his cancer dies, sleeps, how about just goes away! And please just pray for a cure for all cancers. Thanks for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, May 17, 2008
More Relay Pictures
Will and his buddy Jackson Sumo Wrestling-very funny!! and Will in our school's Jail and Bail. That is one way to keep up with him.
Last night was our local Relay for Life. It got pretty chilly, but we all had a great time. Ryan had his lemonade stand again, and got two checks for CURE! All the stuff is still piled in the back of my car this morning and I have no idea how much he raised for Relay. We'll get around to that later today. Heidi made some awesome luminaries for Ryan, as you can see. I was very touched by how many luminaries there were for the two of us. We walked the survivor lap together with our friend, Lillie. We sure missed Jena this year. She came by last week while she was home for a school break. It was great to see her. Thank you, Jena, for all the treats for Ryan. Will walked with me on the team lap, as well as Ryan's 3rd grade teacher and her family. They are moving to Pennsylvania this summer, and we are sure going to miss them.
Ryan is feeling well for the most part. I thought I was headed to the pediatrician with him on Friday for a sore throat, but he said it only hurts in the morning, so it is probably just allergies. Heidi had strep throat a couple of weeks ago, and I certainly don't want him to get that. I am a third of the way through with radiation. Four more weeks to go! Ugh! It isn't bad, just inconvenient and tiresome. I am slathering on creams trying to keep my skin from getting burned. I am looking rather tan on the one side! The exciting part is that my hair is finally coming back! I can't wait to be able to get rid of my wig. Ryan is scheduled to start chemo on Monday, but we are going to put it back a week. He has to be off chemo 3 weeks for the 8H9 and we are just trying to time everything right for that to start in June. Please say prayers that his cancer is gone or at least being still. He is going to have an MIBG either here or in NY, not sure yet where. All that is being worked out between our docs here and those in NY at Sloan. Thanks for checking in on us. Have an awesome weekend. We are going to enjoy a weekend with no soccer or swim meets! Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, May 11, 2008
A new week ahead
It was a busy weekend with Will's soccer tournament, Missy's birthday and Mothers day
. Ryan had a good weekend with all the activities including lots of swimming. He dragged me in tonight and I was surprised
how warm the water is already. We have an appointment with Dr. George on Tuesday. We will schedule a MIBG
scan and bone marrow aspirates sometime during the week. This will give us a good baseline on how to proceed. We are leaning towards the Phase I trial of 8H9 antibodies at Sloan in NY, if we qualify. Hopefully Dr. George will get to talk to them before we meet. Have a good week. Les, Missy, Heidi, Will and SuperRyan
Thursday, May 08, 2008
Not the fun kind... Ryan's MRI yesterday showed noticeable shrinkage, 1/2 cm or so. That gamma knife is an awesome procedure. No one knows if it will ever go completely away or not. He has lost a 3" circle of hair just above his right ear but no radiation burn. There is no standard therapy direction at this point so we are struggling through a couple of options. Full brain radiation or experimental antibodies directly injected into he cerebrospinal fluid. We are trying to weigh the benefits vs the side effects. The odds have never been on our side but now they can't get much worse. It is just such a hard time, he looks and feels great right now, but there is a monster hiding inside, somewhere, waiting. We do know we have to act but decisions get harder and harder. Pray for clarity and a happy healthy little boy we call Super Ryan. We thank you for that, Love, Les Missy, Heidi, Will and SuperRyan
Monday, May 05, 2008
Been busy livin'
Sorry for the delay in updates. We have been go, go, go. We finished Ryan's chemo with no problems the last three days. Ryan went home with his buddy, Max on Friday and spent the night. They had a great time together. Max came home with him for a little while after school today and they had fun in the pool. Will had games both Saturday and Sunday. They lost their first game on Sunday, the last regular game of the season. He has a tournament next weekend, and it will be over. We went to the CURE family picnic on Sunday morning before Will's game. We had a great time and were able to catch up with old friends. I think Ryan climbed to the top of the rock wall four times. We had a little swim team get-together and then it was off to Matt's for his birthday. Poor Ryan was about pooped by that time. He is out playing ball with his brother now. We have really enjoyed the warm weather. Ryan has his first post-Gamma Knife MRI on Wednesday morning. Please pray that we will see a big decrease in that spot. We will meet with Dr. Reissner after the MRI to get results. He goes back to see Dr. George next Tuesday.My radiation started this morning. Not much to say about it. It is like have an x-ray. You lay very still and feel nothing. One down, 29 to go! Thanks for checking in on us, and thanks so very much for your kind words of support and prayers. Love, Les, Missy, Heidi, Will, and SuperRyan