- 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, November 30, 2007
A fun Dentist visit ?????
Ryan has had a little complex about his teeth over the last couple years. They have yellowed quite a bit. I shot out a few emails to cosmetic dentists to see if whitening would be an option for him. The Atlanta Center For Cosmetic Dentistry called us back and said they would love to work with Ryan! Whitening isn't normally done until 14 but they made an exception. We would like to thanks Christina, Angela and the whole team for treating Ryan so wonderfully. It's tough to find a dentist that serves snacks, massages, warm blankets and warm neck pillows. They gave Ryan one to take home, he loves it so much. Another apparatus they let him keep was a "cheek spreader". It was sooo funny. He had that thing in his mouth the whole way home! I told him he'd better be careful or his mouth may stay like that. Ryan will do the "tray whitening" technique for two weeks then go back for a check up. He's already looking forward to that. I will post a couple pics when they send them to me. Thanks again, Les, Missy, Heidi, Will and SuperRyan
Wednesday, November 21, 2007
Smiles for Ryan...
He got his new tubes out. The reality is no stem cells can be collected. He just can't produce whats needed anymore. So the last month of high doses of Cytoxan
, hospital stays, neupogen
shots and surgery resulted in zero for Ryan. It is horrible that he had to go through it all. He's happy today though. He can bring a smile out of anyone at anytime :) Love Les, Missy, Heidi, Will and SuperRyan
Monday, November 19, 2007
Three years ago Wednesday (the day before Thanksgiving) we checked into Egleston for Ryan's first stem cell transplant. Ryan seems to be feeling ok. A little calmer than usual. His chest is a little sore , but Tylenol seems to be taking care of it. I keep meaning to post that he has lost two teeth in the past week. I am just glad he was able to hold onto them until his platelets were up a little bit. He won't go back tomorrow for harverst. The cd34 is a marker they look for in his counts and it just isn't there, yet. Please say a prayer that it will be there on Wednesday.
I learned a lot today and have been waiting to post until I had some good info. I met with the surgeon, Dr. Wood today. He is such a nice man. According to the MRI, my tumor isn't shrinking as they expected. They had thought it would sort of go down like a balloon, but instead it is more like swiss cheese with holes in it. I won't be able to have a lumpectomy, but instead will have a skin saving mastectomy. They will be able to use my same skin, but tunnel out all the stuff inside. It will take some reconstruction, but I can't get that until after radiation. My surgery should be sometime the middle of January. I was really hoping to have it over the Christmas break so I would have plenty of time to recover. Dr. Wood said there was a possibility I wouldn't have to have radiation, but Dr. O'Regan felt strongly I should go ahead with it. I am going to arrange my radiation in Athens, and went ahead and set up an appt. in two weeks with the radiation oncologist at Emory so they can coordinate and manage the dosages. Two weeks will be my last chemo!! I will be celebrating on the inside for sure, but we don't want to make a big deal out of it in front of Ryan. His chemo isn't over. My last round has been the easiest so far. A few of my nails are looking pretty rough, hopefully I can keep them from falling off. Thanks to everyone who has sent hand creams, soaps, and food to the house. Ya'll are all so sweet to want to make this easier for me, and it really means so much.
The picture is from our trees in the front yard. They were so beautiful this year. We had a busy Sunday. Les got the pool closed finally (Hooray!!) and we started putting the Christmas lights on the house. We wanted to take advantage of the warm weather. We got about half-way finished and Les' knee gave out. One of these days we're going to have to get that fixed, too. Can you believe there was a time when we were all seemingly perfectly healthy!! Thanks for all your prayers for our family. Please continue to pray for our continued strength as we face each day ahead. And please pray for a bountiful harvest of stem cells for Ryan. Happy Thanksgiving! Love, Les, Missy, Heidi, Will, and SuperRyan
2 tubes and a port
His little chest seems full. I am glad it will only be for a few days. Just until we get enough stem cells for a rescue should Ryan ever need another one, better safe than sorry.
His surgery went well this morning, no complications. Kellie came by and hung out for a while. Ryan tortured her after completely taping her to the recliner. He was in fine form as usual at the hospital. It's always "my way or the highway". His sharp eye did pick out a larger than normal port needle. He asked if it was the smallest and the nurse said "yes". I asked if it was 5/8th's
and she said "no, it's 3/4's." You can't get anything past him! It was a sad feeling this morning. Ryan and I were in the waiting room here at Egleston
and we called Missy in her waiting room at Emory. We could see each other across the street while we talked :( It will sure be nice when Missy gets through her treatment. I think she will update again tonight with her latest. I know we don't talk about her progress very much and she gets asked a lot to post more info. We had a lot of fun Sunday afternoon. I took Will and Ryan to a paint ball course in which they proceeded to shoot the ^%$^ out of me, ouch. They loved it and now want all their own gear. I could have guessed that. We are so glad everything went smooth today. Thanks for sending all the good thoughts and prayers. Love Les, Missy, Heidi, Will and SuperRyan
Sunday, November 18, 2007
2 ways to help over the holidays
There are two great ways to help raise money for NB research over the Christmas holidays. Lunch for Life has started the Christmas Tree campaign already and Ryan got the first two ornaments on his tree this morning. There is a link on the left side of Ryan's site. If you use the code 26819, Ryan gets an extra ornament. All the money raised by Lunch for Life goes to find a cure for Neuroblastoma. Also, when you are doing your holiday shopping, register with i-give
. There are tons of stores that will make donations when you make a purchase. You can choose your charity when you register. Aflac and the Rally Foundation are both charities you can select.
Ryan is doing great. Friday was incredibly long day. My parents took Ryan for his count check at SR and had to stay all day to get blood and platelets. No reaction today!! Hooray! Friday was also the Fall Jamboree at Ryan's school. He was so excited, but then so disappointed when he didn't leave the clinic till 7 pm! Traffic was terrible, but my dad took back roads and they made it to the school by 8:30, and we tore through it in 30 minutes!
So, for right now, the plan is to arrive at Egleston tomorrow at 7:15 for counts and a line placement. Ryan will be put to sleep to put the double lumen catheter in his chest. Please pray that his counts are high enough and that he tolerates the procedure. He hates waking up to the taste and smell of the anesthesia. They will not try to harvest tomorrow because of risk of infection. If his counts are right, he will go back on Tuesday for the harvest. Please pray for lots of stem cells. We don't have a plan for the stem cells right now, but having them could make Ryan eligible for a study that comes available later. Thanks for checking in on us and many, many thanks for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, November 15, 2007
Not close enough!
Just a quick update to let you know he didn't get his line placed today. His counts were not quite high enough yesterday and he is to go back tomorrow morning. He will probably get his line put in on Monday which is kind of a bummer since I have my chemo and dr appts set up for Monday. He will probably be at Egleston and I will be just across at the Winship. At least I can walk over and check on him throughout the day. Thanks to everyone who has sent cards and emails of support over the last several weeks. Your encouragement has been very uplifting. Please continue to pray for Ryan and all the children fighting this terrible disease. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, November 13, 2007
Getting close to the harvest.
Sorry for the delay in updates. We have been so busy. I kept Ryan home from school last Thursday, and he had to go to the clinic on Friday for blood and platelets. He woke up in the middle of the night Wed. night bleeding in his mouth. We went through an entire box of kleenex and wrecked a towel getting it stopped. I was a little nervous there for a while, but Ryan stayed calm the whole time. Friday was an incredibly long day. He got platelets first and then blood. The blood had to be stopped not long after it started. He started breaking out, probably from the platelets. We all managed to make it to the last home football game Friday night and had a really good time. Our team even won! Go Wildcats!! Heidi and Les took off early Saturday for her soccer tournament and Ryan and I went to Cartersville to see Jena give up her Miss Teen Ga. crown. Fortunately, my sister and her kids went with us. Ryan was so glad to spend time with Nick. It was great to see Jena and her mom. Ryan sat on the front row taking pictures of all the pretty girls with his camera phone. He picked a blonde with a day-glo orange dress that turned out to be the 2nd runner-up. He loves pretty girls!! I will post some pictures later. We got to spend Saturday night with the Pecks at our house. That is always a good time!! I took Heidi back to her tournament on Sunday, and the boys got to spend some time together at home. We got Ryan's counts checked yesterday, and they have come up quite a bit. Erika called today and his white count was 4.7! Wow! He has to go to the clinic for counts in the morning. If his counts are just right, they will check for the magic number for harvest. There was talk of getting blood (hgb-7.7) so his central line could be placed on Thursday! Please pray that all of this goes smoothly, and that they are able to get all the stem cells we need. And please pray that Ryan is able to tolerate all this. He has been through so much lately, and I am sure is sick of all of it. Thanks for checking in! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, November 06, 2007
He is home!!
Ryan got to come home around lunch time today. He was so happy to see Heidi and Will and Mackie, too. His poor little mouth is bleeding on and off so we have to watch that pretty closely. His platelets are low. If he has any fever, he has to go straight back. He is going to stay home from school tomorrow just to keep an eye on his mouth and keep the mouth rinses going and to give his white count a chance to jump a little higher, too. So we are back on with the Neupogen shots. That was the best part of being in the hospital. He could get the Neupogen through his port without any pain. Please pray that Ryan has no more fever, that his mouth heals quickly, and that Neupogen is able to raise his counts enough to harvest a lot of stem cells. Love, Les, Missy, Heidi, Will, and SuperRyan
No fever last night!!
Here are a few pictures from Family Camp. Yes, that's me in my wig! The news from Ryan is no fever over night! Hip, hip, hooray!!! We are hoping he will get to come home today-more like counting on it. No word on his counts this morning. I wish I had had my camera yesterday morning when he was flying his little helicopters with his Dad-the biggest smiles I have seen in a while. It made a great start to all of our days. My chemo ran smoothly yesterday, but long. I went ahead and made appts for the last two rounds and that is a good feeling. I also made an appt to see the surgeon when I go back in two weeks. I want to get the surgery scheduled ASAP. Over Christmas break would be ideal. It would give me some time to recover. They are trying to schedule an MRI for me next Monday just to make sure we are where we want to be. I will post again if I hear Ryan is coming home. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, November 05, 2007
White cells, where are you??
Uuuuuugggghhhhhh!!!!!!! I am so frustrated and I know Ryan is too.
He had fever at midnight last night of 102. They have been able to stop the Lortab and just use Tylenol. I think his mouth might be feeling a bit better, but he isn't eating anything. I hate for him to lose any weight. There has been no budge in his counts. I am hoping his white count is getting used up by the repairs to his mouth from the chemo. His platelet count has dropped to 10 this morning so he may get platelets today. We were able to get out of the hospital for several hours yesterday. He spent the last of his birthday money that he has been holding onto at Toys R Us. He will be trying to fly a remote control helicopter today with his Grand-daddy, I just have a feeling. I hate to leave him, but I have an appt. at Emory for my chemo today. Please pray that his white count will make a good jump tomorrow and we can start thinking about going home. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, November 03, 2007
Both Ryan and Dawgs, Hot
Ryan's fever just keeps creeping back on him. He was 103 at 10 last night, then good until 6 tonight when it spiked at 103 again. That always adds another day :( Our nurse unhooked Ryan for a couple hours and we cruised over to Perimeter Mall and shared an ice cream sundae. We were hoping get out Sunday night, but we are crossing our fingers for Monday. His mouth and gums are improving thanks to the rinses. Missy, Will, Lanne, Macie and Smith got to go see Georgia spank Troy State's butt at Sanford Stadium this afternoon. Will really loves football. It was a beautiful fall day for it. Heidi's soccer game ended in a tie with one of the toughest teams in the league even though they only had nine players make it. One more weekend left for her and soccer. She made the high school basketball team. She is very happy about that. She will also be playing rec. basketball. Seems like an awful full plate to me!
Take care and send Ryan some positive thoughts to help break him out !! Les, Missy, Will, Heidi and SuperRyan
Friday, November 02, 2007
We're in for the weekend
We are just here hanging out at Scottish Rite. We didn't get a room until about 1 am, and we're not on 3North where our usual nurses are, but we will move up there sometime today. Ryan got platelets during the night (with no reaction, yea!!) and will get some red blood today to try and make him feel better. He is pretty quiet. His mouth hurts. We are doing the mouth rinses, but our nurse, Melissa, thinks it will get worse before it gets better. She doesn't see him going home before Monday. About the only thing that will make it better is a rise in his white count, and we're not seeing that right now. His fever is up and down, but Tylenol is doing the trick. They have ordered him some Lortab for the mouth pain and will up that to "the button" he can push and get IV pain med if we need to. Please say a prayer that his white count comes up soon and fights the mouth issues. He just wants to go home. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, November 01, 2007
A step in the right direction
Just a quick note on Ryan's scan results from last week. They show substantial decrease in amount and location of disease
! Yeah! On the down side he just checked into Scottish this evening with fever. The last round of higher dose chemo made him sicker than normal and his gums are blistered and causing him some pain. Lots of liquids on the menu for the next few days. Love Les, Missy, Heidi, Will and SuperRyan