- 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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Friday, September 28, 2007
Still no fevers. (I whisper that cause I'm afraid I will jinx it!)
Thursday, September 27, 2007
So far, all our prayers are working. He is cool this morning. He did have to go to the clinic for red blood yesterday. They called mid-morning and said his hemoglobin was 5.5 and should head on down. Fortunately, my parents were able to take him, but it sure made for a long day for all of them. We will wait and see what his platelets look like today. He has to go back to Coach Dalley's clinic for labs again today. Please keep praying for no fevers. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, September 26, 2007
It's that time again
We are approaching Ryan's potential fever days. Please pray he will get through the next three days without any fever. He just hates having to go in to the hospital for that, even though he seems to have a good time when he's there. After we get the antibiotics, his fevers have typically gone down and stayed down, and he simply gets to hang out for 48 hrs. For that, we have been so thankful. It sure beats going down and fighting fever for days.
We had an awesome time at JSP Day. The kids had fun on the lake, the waterslide, the moon-walk, etc, etc. Smith and Julie just out did themselves. We stayed late for the fire-works. Thanks, John and Smith for a great show. We are so thankful that they raised money for pediatric cancer research. Thanks to everyone who bought raffle tickets or made donations. I am not sure I have ever met someone who has taken such a personal tragedy and used it for so much good. Smith and Julie's strength shined on Sunday afternoon and is evident everytime I talk to them.
I got through my treatment on Monday. Dr. O'Regan is pleased with my progress. She gave me some meds to help manage some of my side effects. Hopefully, this week will go better than the last few. As always, thank ya'll so much for taking the time to check on us. Thank you for your prayers for all of us. We will be meeting with the bone marrow transplant team next week and Dr. George to make some plans for Ryan. Please pray that we make the right decisions that will lead to a complete cure for him so we can enjoy watching him grow up doing all the normal boy-things. We want for nothing more in this life than that. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, September 23, 2007
We got 1000 tags!
We received this email from Jeff McAfee earlier this week:
Congrats everyone… we made it! We have 1000 reservations!
There are 902 reservations on record, but Renfore Outdoor Advertising and Butler Lexus have agreed to purchase 100 tags as part of an upcoming Butler Lexus’ “Joanna Tag” promotional campaign.
I can’t tell you how appreciative Misty, Paul and I are for all everyone has done to make this possible.
Please let the fine folks at Butler Lexus and Renfroe Outdoor know how much you appreciate not only their significant donation to get us to 1000 reservations but also the commitment to widespread distribution of the “Joanna Tag” once it goes into production. We have our sights now set on surpassing the “other” cancer plate currently in production, they have about 38,000. The model that Butler is using for their “Joanna Tag” campaign could be used by car dealers all over the state!
I am so proud of what we, together, have accomplished. It has been 2 years of dreaming about reaching this milestone. Now, it’s up to the state to get them manufactured and made available, and a full-blown marketing campaign for us to get sample plates in tag offices all over the state.
Joanna would be so proud.
Thanks to all our family and friends that reserved a tag. I hope it won't be too long before we can put them on our cars. There is a link to the left for more information on the tag. You can register for one of them at your county tag office.
We had a houseful at our house last night! The boys and the girls all had a great time. Heidi and her friends looked beautiful as they headed out to Homecoming (yes, they are twins!). We are looking forward to JSP Day today with the Pecks and lots of friends. Tomorrow Ryan will be back at school and I have my 3rd treatment at Emory. My friend, Karen, has been very insistent on going with me, and for that I feel very blessed. She is great company. Last time, we sat and laughed and felt kind of conspicuously youthful and fun. I won't let Les go with me. It is just too much for one person to watch their child and their spouse go through the needle sticks, the pumps, the every detail of our treatment. Just too much! I know he is strong enough to handle it all, but he just shouldn't have to. Maybe it only makes me feel better that I can take something off of him, but I guess it is worth that. Thanks for checking in with us. Please continue to pray for our strength and that Ryan will go without fever this week. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, September 19, 2007
Way beyond his years!
As you can see, Ryan never stops clowning around. He finished day three of chemo today-two more to go. His counts on Monday were a little low for starting, but we needed to move ahead. No decisions have been made as of yet, on his next course of treatment. We are still waiting on some information from Dr. Marcus, his radiation oncologist at Emory. Ryan has been a great source of comfort for me this week. He is so much like his daddy- just incredibly kind and thoughtful. I told him this morning what a wimp I am and how proud I am of how he has handled so much and been so strong. He told me that no matter what it takes we will get through it. So, I will try not to be such a wimp! My side effects individually are not that bad, it's just when you put them all together, it stinks. I finished my oral chemo Monday night, and was really hoping to be feeling a lot better by now. Hopefully, I will get in a few good days before I go back on Monday to start over again. It is a busy weekend ahead for us. The kids have their usual games on Saturday. Friday night is Homecoming at Apalachee, so we will all be there for that. Heidi is going to the dance on Saturday. I will post a picture. I know she will look beautiful. We are excited about JSP Day on Sunday at the Pecks. It is their annual event to remember their son Jackson's birthday. He would have been 7 this Tuesday. This year they are holding a fund-raiser for pediatric cancer. Who knows? Maybe this will fund the research that will cure Ryan! We all want that more than anything. Please continue to pray that we will find the right treatment for him, and that he will be strong and just as playful as ever. Thank yall so much for your prayers for us. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, September 14, 2007
What a week!
What a week, what a week! Ryan has had a good week at school. I think the multiplication tables are finally sinking in! I got my chemo on Tuesday and have been taking oral chemo each day. The side effects have been minimal so far. Ryan is headed off to play with Matt tomorrow. They bought a boat and are looking forward to a great time on the lake. Heidi and Will both have games tomorrow, and we so enjoy cheering them on. I hope you have been able to access the caringbridge site for the Dunn twins. I think some of you had trouble, but it has worked for me everytime. We are working on the next steps of Ryan's treatment with Dr. George, and will update with that when we have something definite. I think we will be traveling to Philadelphia for the MIBG treatment. There is still a lot to figure out. Please say a prayer for us as we continue to forge ahead with all that we have to deal with, and please pray for all of our friends and a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, September 10, 2007
Now we've both been bumped!
Just a quick update. Ryan got sent home today and chemo re-scheduled for next week. His platelets are too low. They are coming up, but just aren't high enough today. Also, I was sent this link today from a cancer mommy friend. This family's newborn twins, (http://www.caringbridge.org/, search Dunntwins) both have Neuroblastoma, and I am certain they would welcome your prayers and kind words. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, September 09, 2007
Hooray for weekends!
We got some news on Ryan's scans late Friday. The CT looked good which we expected, but are always thankful for. The bone scan looked "stable, if not better". We haven't talked to the dr. yet, only Ryan's nurse, Erika. We have a few questions about the results, and should get some answers this week. He goes back tomorrow for chemo again. Hopefully, his platelets have come up enough to get started. He pulled a tooth in the car on Thursday, and I thought it would never stop bleeding. A few moments of real panic!! We all went to the Apalachee football game Friday night, and Ryan went home with his buddy, Max. Heidi played soccer Saturday morning in Athens. They won 9-0!! We left there and went straight to Will's first football game. He played well, and they won their game, too. It looks like Ryan has earned the spot at Water Boy. Thanks, Neil and Jenifer, for his t-shirt! It is amazing how comforting rituals like watching your kids play sports can be. Those events are our "normal" and we love them. We went to see the "Walking with Dinosaurs" show at Phillips Arena last night. Thank you, Camp Sunshine!! Will and Ryan really loved it, and I have to admit, it was pretty amazing seeing the huge dinosaurs walk around and look so real. My chemo on Monday has been delayed. Still having problems getting the oral chemo. The wonderful folks at Emory are hoping to get this worked out in a day or so. Everyone down there has been so nice, but I am ready to see some signs I am getting better. Thank you all for your prayers and encouragement for Ryan, myself, and our family. Please, also pray for our friend, Taylor. She is a beautiful (inside and out) 16 year old who has been fighting her very rare cancer for many years. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, September 05, 2007
Writing on the wall
We headed down to Scottish at 6:30 hoping to be out by 1pm - ha ha... Ryan spent the first 2 hours drinking his Gatorade/contrast cocktail. He always does such a great job with that. He got his IV at 9:45 just as planned and we had labs drawn (those numbers came back good). We thought we could have his nuclear injection done at the same time because they can't perform that scan until 3 hours after. They opted to hold off on that until his CT scan was complete. I wish all scans were as simple as the CT ! We finished with the CT and they gave Ryan his isotope injection. Last one for the day so we got to remove his IV. With 3 hours to kill, we went and had lunch at Cheese Burger in Paradise and then a little shopping at Perimeter Mall. At the fountain, Ryan made his usual wish, " I wish Sandy and Tiger (our old dog and cat) would come back from heaven, only this time they could talk and that they would get along with Mackey". It's always the same, he's never asked for this burden to be lifted from himself. It's always a heart breaker. We got back to Nuclear at 1:45. There is a wall under construction in the little waiting area. Just roughed in dry wall where kids have been drawing pictures, writing thank you notes and signing their names, so I asked Ryan if he would like to sign his name. Well this is what he did...He drew a picture of a hospital in a pot that was boiling over an open fire. He drew himself with devil horns stirring the pot and wrote below it "I hate this place" SR (superryan) He has always been one to speak exactly how he feels and I don't think he held back this time. Nuclear turned into a 3 hour set of scans and re-scans. It is so very difficult for anyone to lay motionless for long periods of time. Ryan is such a good little boy. He brings a shining light with him where ever he goes, even strangers are drawn to him like they've known him for years. We all love Ryan so very much...just wish he would knock out those darn multiplication tables!!! Thanks again for holding Ryan in your thoughts and we hope to get good news from todays scans by Friday. One other thing, please check out this You Tube video...The images shown are a small sample of what these brave children live with everyday. It really says it all... http://www.youtube.com/watch?v=AGS4yE5v9rM Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, September 04, 2007
A Happy Labor Day!
We had a great weekend, especially with the extra day. We took in the Pirate movie, finally, on Sunday. We spent time playing and relaxing together. Our friends, the Pecks, came out to the house yesterday for a yummy cookout. Heidi made the best brownies! Ryan had a good day at school today, but he will miss tomorrow. He has a CT scan and a bone scan starting early at 7:30. Please say prayers that no cancer shows up on the scan. We did hear that the BMT team has agreed to harvest Ryan's stem cells. We are hoping this happens after the next round of chemo. The cells are harvested after his counts have dropped from chemo and are on the way back up. He will have to have his double lumen cathether put back in for the harvest, but it will be removed afterwards. Unfortunately, this means two surgeries (that terrible anesthesia!!) Please pray that all of this goes without any extra stress or problems. Thanks for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, September 01, 2007
Cat Scratch Fever
We received our walking papers this morning and didn't waste anytime getting outta there. Ryan's counts bounced back very well after a slight scare with his platelet infusion. We were kicking back when all of the sudden, half way though the platelets, Ryan's arm started itching. He thought it was mosquito bites! As we are looking at his arm, you could see welts forming all over his body. He does get pre-medicated with Tylenol and Benadryl but got another shot of Benadryl and a steroid to ease the ferocious itching. They stopped the platelets and the welts left as quickly as they started. Ryan also was given blood, thankfully without any reactions. We had Julie and Smith visit and they had brought Ryan's favorite wings. Kelly came by and brought Ryan's favorite Mongolian Beef and a special thanks to Nanny and Grandaddy for fighting Friday night rush hour to bring Missy her Chemo pills. They have been a nightmare to get. She finally had to buy the first round because insurance still hasn't given their "approval" yet, already 4 days late. Hopefully this will be rectified by next week and Missy will have one less thing to worry about. So we are very thankful to have a long weekend with nothing but fun on the schedule with all of us together (winning Mega Millions would have been OK to :) Glad to be home. Les, Missy, Heidi, Will and SuperRyan