- 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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Thursday, August 30, 2007
Ryan and Les are headed down to Scottish right now. Ryan started with low grade fever after school yesterday. We had his counts checked at Coach Gary's clinic after school and got the results this morning. His ANC is 0 and both hemoglobin and platelets are below transfusion levels. So, he will spend most of today in the clinic. At least he will be in a space right away and not hanging out in the ER. He doesn't seem to feel bad and, of course, didn't want to go. He will have more energy after his transfusions. They will just have to wait for his ANC to come up so he can fight off any germs and infections. He does have a sore on the inside of his cheek from his chemo. Tomorrow is Les' birthday, so we will likely be celebrating it together in the hospital. Will and Heidi will probably go to the Winder-Barrow /Apalachee game with friends. It is the big game of the season, and I know they won't want to miss it. Thanks for checking in. Please pray that Ryan has a short, healthy stay at the hospital. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, August 28, 2007
5 sticks for Missy today, ouch!
Sorry keep you hanging so long. As you can imagine, it has been crazy around here lately. Ryan finished up his chemo on Friday. We will have his labs drawn tomorrow to check his counts. He got a lot of play time in with Matt this weekend while Will was at sibling camp. Thank you Camp Sunshine staff and volunteers. Will always has a great time and would stay a week if they would let him. We received very sad news that Jon Allmett, a long time volunteer and camp music-man passed away last week. The kids always loved it when Jon was at camp and they love playing his cd in the car. Please pray for Jon's family. The pictures are of Ryan and his gourds that he planted at my mom's friend's farm. They live just down the road and Ryan drove me down there on the golf cart to check them out. He was pretty proud of them. Thanks, Brenda and Bobby. The other picture is of a sign the kids and I painted for my mom. It was a small thank-you for taking such good care of Mackie while we were at the beach this summer. I have continued to have various appts to get ready to start treatment which happened today. Hooray!! I got one drug today by IV and will take oral chemo for the next week. I'll have a week off and then go back and do it again (probably 8 times). I am feeling great and just very glad to have started our attack. Ryan has enjoyed his two days of school. Heidi seems to be making a good transition into high school, and Will is missing some of his awesome 6th grade teachers. Thanks for checking in on us, and thanks so much for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, August 22, 2007
Another very long day
Ryan wasn't feeling very well when he climbed in the car to go this morning. He started feeling better and ate a little, but then got sick. He seemed to feel better after that. He got red blood and got out of there just in time for the Atlanta traffic. Seems like everytime my parents take him he gets blood. That makes for a very long day. My appt. with Dr. O'Regan went very well. She, too, was incredibly nice. I met most of her team. They were all very positive and friendly. They are working to schedule my MRI so I can possibly start treatment as soon as Monday. I have some papers to look over tonight to select a treatment plan. All I have learned over the last 3 years has really prepared me for this. None of it seems too bad. I did have an EKG so they could establish a baseline for my heart function. This is one of those tests that Ryan hates because of the sticky buttons. I left some of mine on so he could see them and take them off for me. He thought that was pretty cool. Hopefully, tomorrow will go better for him. We have open-house at school and the kids start on Friday. I could really use an extra couple of weeks! Thanks for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
"I am going to do very well"
Ryan's chemo is going ok. He started chemo Monday with a platelet count of 52k. They will recheck his counts during the week to see if he needs either red blood or platelets. He was asleep when we got there on Tuesday (after a horrific ride in traffic) so I got a wagon in the parking deck and loaded him in. He stayed in the wagon pretty much all day just watching TV. Thank you, Julie and Lori Peck, for bringing me lunch and for the treats for us. They played Deal or No Deal and kept Ryan company while I went to my appt. Thank you, Kellie, for staying with him and taking him for Mongolian Beef. He and Will ate their take-out order after football last night. My appt. with Dr. Wood went incredibly well. He was so very nice and thinks I am going to do very well. He said he would rush the start of my treatment more for my mental health than out of any sense of medical urgency. He wants me to have an MRI because of my age. I don't know when, yet. I am anxious to hear about the chemo options today. I just got home in time to take Will to his football scrimmage. Ryan worked as his team's "water-boy" and had a great time. He was so funny to watch filling the bottles and taking them around to all the boys. He kept the sidelines "tidied" like his daddy would. I am so glad he got that gene. Will worked hard in spite of continually lining up against the star player of the other team. He is going to the clinic today with Ryan and my parents. I will post again after I find out about my chemo. Thanks for checking in on us. Please continue to pray for Ryan and his friends Taylor, Luke, Hannah, and so many others fighting hard. Please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, August 17, 2007
Just a quick update. We got Ryan's counts back today and everything is headed up. We hope his platelets will be high enough for chemo on Monday. I have two appts scheduled next week at Emory. I will see a surgeon, Dr. Wood, on Tuesday and the oncologist, Dr. O'Regan, on Wed. It will be so great to get started. Les and I are headed up to a B & B in the mountains tomorrow for just a little escape and to get our game faces on. We will definitely be ready by Tuesday. Thanks again, for all ya'll's messages. They have really given me a lot of strength and encouragement. Have an awesome weekend. Hope ya'll got some rain. We got just a little and it was so great! The picture is of one of my hanging baskets my mom made for me. The heat is doing a number on them. Love, Les, Missy, Heidi, Will, and SuperRyan
Enjoying the last days of summer.
Not much new to update on the medical front. We had Ryan's labs drawn yesterday at Coach Gary's clinic, and Ryan called me after leaving to tell me how great it was. Leslie had been out of town for the last few days so he took him. They were thrilled to see Dylan's mom, Kathleen, meet them at the front desk. Dylan and Ryan swam on the same relays at swim team. We will get results today and hope to see a big increase in his red blood count and platelets. I had explained to Ryan about how low his platelets were on Monday and he got very upset on Wednesday when he thought he was going to lose a tooth. I hated that he was so frightened. He did lose the tooth and we were able to keep the bleeding to a minimum. I am hoping to hear from Emory today that they have scheduled my appt. This waiting around is starting to really get to me. The phone calls, emails, and cards I have received have been so uplifting. I got a very special care package that really, really touched me. Catie's
and Mary Grace's
mommy's sent me a bracelet engraved with a great message from my cancer-mommy friends to "expect miracles" and a cd full of inspirational songs. We all belong to various groups in our lifetimes ranging from little league sports teams to college sororities and professional colleagues. This family of cancer-mommies is one of the most special groups I have ever belonged to. Believe me, I would give anything to have never belonged, but the relationships I have made during the last three years are with the strongest women I've ever known. Many people have asked how we do it, but I have yet to meet a mom that has crawled under the table and cried the days away. Well, at least more than one day! I am going to expect miracles and I'm going to play my cd when I have to drive down to Emory for my treatments. Thanks to all of you for your prayers and words of encouragement. Please keep praying for Ryan and all his little cancer friends and a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, August 14, 2007
Is it only Tuesday?
Time sure seems to pass slowly when you are wanting to get moving on your cancer attack plan! We have had a good last few days. Ryan seems to be feeling alright. He has had friends over playing just about everyday. We went and got his labs yesterday. His hemoglobin was 8.1 and platelets only 12,ooo. Both of these numbers are at transfusion levels. The clinic believes the numbers are on the way up. His white count has come up nicely already. We are just trying to keep him from getting bruised or cut. He has to get labs repeated on Thursday, and we expect that to show more of a rise. The needle-stick on Monday was a little traumatic. He was screaming at the nurse to "Take it out!!!!!" as she tried moving it around to get blood. We are going to start getting his labs done at our swim coach's clinic in Braselton instead of Athens. I think they take care of a lot more kids. We are still working on getting the slides of my biopsies sent to Emory. The hospital in Athens sent them to the dr's office in Athens instead of Emory, so there is a delay in that already. The option of a mastectomy has been taken off the table as the lymph node was positive. Looks like chemo for me. I almost think Ryan thinks this is great. He, of course, doesn't really understand it all, but I think it is somehow reassuring to him that this has happened to someone else in our family. He is already teasing me about having to take the liquid antibiotic that tastes bad! We are definitely keeping our chins up. This time is tough not doing anything. I know it will be better once we have a plan in place and can get started. Thank ya'll so much for your prayers for all of us. We feel so incredibly blessed to have so many that care for us. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, August 11, 2007
We've got some tough guys at our house!
We couldn't have asked for a better week with no fever than last. Thank you Ryan! I was seriously ready to walk out the door Thursday at 5am. He was right at 101 degrees but Missy made me stand down and wait a couple hours. She's so smart. It hovered around 100 for the next day and a half then back to normal. We really needed the tim
e at home with everyone together. We should have Missy's first Emory visit near the end of next week then strap on our cancer battle gear and begin the new fight. I am hoping for at least a split chemo schedule between the two of them rather than at the same time. Ryan just got home from a little shopping (and pedi). He walked in the door in a complete football uni. He is such a mess! But he's happy!!!! Love Les, Missy, Heidi, Will, and SuperRyan.
Thursday, August 09, 2007
We have been watching Ryan's fever since about 5 am. We are supposed to go straight to the hospital if it hits 101, but that is what we did the last two rounds and had no fever after arriving at Scottish Rite. Once you go, they are likely to keep you for 48 hrs. as a precaution. So we want to make sure that he has fever. It has gotten close to 101 twice today, but we are pushing fluids big time. My parents came and stayed while we went to see my doc in Athens. He was able to do a node aspirate, but we won't know the results of that until early next week. I spent a lot of time on the phone today trying to set up my treatment at Emory. Many, many thanks to those that offered recommendations on doctors. When Ryan got sick, we walked in and said his tummy hurt and everyone took over from there. Not the same in the adult world, let me tell you! You have to round all the docs up yourself. Anyway, we are home, and so happy to be there. Please say a prayer that Ryan will get by without a trip to the hospital this go round. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, August 08, 2007
More @#$% in my backpack, Smith!
Ok, SuperRyan first- His white count today was only .5 so we are watching him for fevers. None so far, hopefully we will get through this round without it. He seems to feel good and even made it to Toys R Us to spend a gift card for a new bike ramp. He was thrilled to get his dirt bike going.
Now, me-ugh!- I am still in disbelief. I have been taking care of a lump in my breast with ultrasounds, second opinions, and the like. Neither of the surgeons I saw were too alarmed about it, and it hurt. Everyone said that if it hurt, that was a good sign that it wasn't cancer. So much for that! I will learn more at my appt. tomorrow, but I am looking to get a referral to a dr. in Atlanta rather than Athens. I just think that might be easier with all the trips we make down there for Ryan. I don't know what the course of treatment might be, but I do know that it is not going to take my focus off of Ryan and his needs. We have worked hard to keep cancer away from our everyday life, and we don't want that to change. It will be a struggle to keep him from seeing the effects of it in me and not worry himself sick. So, thank you for your emails, posts, and phone calls. Thank you mostly for your prayers. Please pray for a quick treatment and that we can minimize the negative impact that it will obviously have on Ryan, and Heidi and Will.
Love, Les and Missy
Tuesday, August 07, 2007
Wet Weekend...Terrible Tuesday :(
I hope you can tell from the pictures what a great day we had Saturday at the lake with the Pecks. Thank you Matt, Lori, Hunter, and Troy for such a great day! The kids wake-boarded, skied, and tubed all day. It was nearly dark before we could get them off the lake. Matt did give Ryan a special suprise just before leaving, a Honda 50 to use as long as he wants! (pics soon) Thank you!! He also got a remote control skier from their neighbors Mike and Jen for his birthday. Ryan is still doing well from his last round of chemo. Maybe this is the week we get lucky an he'll stay out if the hospital...we need some good news right now after the horrible news we got this morning. The cornerstone of our family, the one that gets everything paid, our lives kept in order and perfectly scheduled, the one that gives us all the love and energy we feed off of, has unwillingly joined Ryan's special club. Missy was diagnosed with cancer today. We have a long way to go, starting with her first appointment this Thursday to draft a winning game plan. We didn't see this coming but we must deal with what has been laid before us one day at a time. To try and look the big picture is just too overwhelming to even comprehend. We realize this will come as much a shock to you, all our friends, as it did to us. Please keep Missy and Ryan in your thoughts and prayers. Love, Les, Missy, Heidi, Will and Ryan
Saturday, August 04, 2007
Here is the latest wish of my little thrill-seeker. Don't sign me up to have my head examined, yet. This one isn't actually his (but he is wanting one awfully bad). His soccer coach Thomas brought his family and a few bikes over last night for Ryan to check out. I was absolutely shocked when he jumped on it and took off. He rode up and down, back and forth, and actually the four-wheeler trail once with it. Now he is absolutely insistent that we get one, TODAY! We are looking forward to our day at the lake with the Pecks, but we will miss Julie.
Gramma left early this morning. We all enjoyed her visit so much and hate to see her go home. We had really been looking forward to a trip back to Vancouver Island in August, but maybe next year!! Thanks for checking in on Ryan, and have an awesome weekend with your family. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, August 03, 2007
Day 5 of Round 5
These are just a few of the Flashes of Hope pictures we received. Are
wonderful?? I just love Ryan's little smile. As you can tell, he was much happier having his picture made with Dr. Rapkin than me. I will post more in the coming weeks, but these pictures will always be treasured.
Les took Ryan in this morning for the last day of chemo this round. He will be happy to be de-accessed this afternoon. He did get red blood yesterday so hopefully that will keep him at home. He lost a tooth on the way home yesterday. I was a little worried about his platelets, but the bleeding wasn't too bad. Now, if only it won't be a source of infection. We got a visit yesterday at the clinic from Michelle from Camp Sunshine. Will is looking forward to sibling camp coming up at the end of August. And we got a visit from Kellie. She brought Ryan a birthday present and gift cards for Heidi and Will so they don't feel so left out of everything. We are so thankful for her friendship. She is doing an awesome job raising money for the hem/onc unit. Speaking of that, I want to tell you about another fund-raising opportunity. Check out Play for Patrick
to see details of a golf tournament coming up in September at the Druid Hills Golf Club benefitting Neuroblastoma Research at Aflac here in Atlanta. This is definitely where we want our money to go. We are hoping to get our fund-raiser going on Ryan's site before school starts. Today is our last day with Gramma. We are going to go out and do a little tax-free shopping. Tomorrow we are going water skiing with the Peck clan. They are so awesome to put this day together for our kids. Will has just been dying for it ever since he watched Ryan ski when we were at Rosemary in June. Thanks for checking in on us and please keep up your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, August 02, 2007
Good Luck, Jena!
We went to Jena's send-off party last night. She is headed out to California for the Miss Teen USA pageant that will air on TV Aug. 24. She looked beautiful, as usual. Ryan gave her a drawing of her on stage with people throwing flowers at her. She gave him a wrestling mask for his birthday. He loved it and was so animated when he put it on. We are back this morning for Day 4 of chemo. Heidi, Will, and Gramma came with us. He will probably get blood today also, which will make for a very long day. Thanks for checking in on us. Please continue to pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan