- 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, February 29, 2008
I am finally home.
First let me update you on the kids: Ryan had labs drawn today and we got a call from Erika before he even made it back home. His ANC is high enough to start chemo on Monday, but he will only get it every other day. Will went back to school on Thursday and seems like he is back to his old self. Heidi has managed to not get sick, but I don't know how. She just must be exhausted. She has had soccer and/or basketball every night. She played in the varsity game tonight (I got to see half!) and then she and her daddy left for Savannah. Please pray for their safe journey. Les also has managed to not get sick. I know he will be so glad when I am feeling better and he doesn't have to be the bus driver all by himself. :) I got to come home today around lunchtime. It has been a pretty miserable few days. I am so thankful that Les and Karen took me to the ER at Emory though. I haven't had any fever since my surgery. I am on oral antibiotics and go back to see my surgeon next Tuesday. My chemo for Monday has been cancelled indefinitely. They won't do chemo with these drains in due to the risk of infection. Dr. Losken thought I would keep them for four weeks. Please pray that the infection continues to clear up on these new meds and causes me no more trouble, and please pray that Ryan's chemo schedule will continue to do what we need it to and keep his cancer away. That is the most important thing. Thank you for checking in on us and lifting us up in prayer. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, February 27, 2008
She is resting
Missy headed to the OR at 3:30 this afternoon and was back in the room by 8:30. I can't see how long the incision is, maybe 6"? They removed a lot of infection and fluid and gave her 2 more drains, she hates those! We will speak with the Dr. in the morning to see how long she will have to stay in the hospital. Heidi won her JV soccer game, Yeah! Will still has a fever, Boo! If he has one in the morning, he will be visiting his Dr., and Ryan is doing GREAT!! Les, Missy, Heidi, Will and SuperRyan.
A week later and Missy is worse. We took her to the Emory ER last night because her high fevers just keep coming back. It appears there is an infection complication from the expander. She has started a broad base antibiotic and will be heading to the OR this morning to have fluid removed that has caused a lot of swelling and pressure. I'm sure they will keep her a few days to continue the antibiotic and make sure they have zapped the infection. Ryan is feeling well but his counts had not rebounded enough to start chemo after 3 weeks off. He should be able to begin next Monday. Will has the flu and has been out of school for the last 3 days, hopefully he is on the mend to get back at it tomorrow. Heidi has been going 100 mph with both JV and Varsity soccer, 3-4 games a week, practice every day after school and on top of that, Basketball practice daily, to get ready for State championships beginning this Friday in Savannah, whew!. We'll be back home Saturday night. I'll be so happy when that's done! Please keep Missy in your thoughts and prayers. Les, Missy, Heidi, Will and SuperRyan
Friday, February 22, 2008
Happy Birthday, Heidi
I feel like I am back from a near-death experience. I have never been so sick in all my life. Let me tell you, if you start feeling the flu coming in get to your doctor's office. Do not pass go, do not stop, go straight to the dr. It really hit me hard lunchtime on Wednesday. I went to see my primary care doc Thursday morning really seeking confirmation that I did indeed have the flu. I wasn't really expecting them to be able to do anything for me, but did they ever. I got a script for Tamiflu which I filled immediately. I had been alternating two Tylenol and one Advil. I knew from our experience with Ryan that ibuprofin really works on a fever. Anyway, I found out I could take 4 Advil every four hours! If my fever didn't come down after 8 Advil, I could alternate Tylenol after 2 hrs. Well, it took every bit of that and a tepid bath to finally get my temp down. And, yes, I did have a flu shot. I am really hoping I have turned a corner. My fever broke during the night and I am just trying to keep the meds going to keep it down. I just hope noone else comes down with it. My mom and my sister, Les, and my dear friend, Karen, have been taking care of me and I would hate for one of them to get it. Please say a prayer that they don't.
Today is our sweet Heidi's 15th birthday! Oh My! She is anxious to go and take her driver's test. We are hoping her soccer game will get cancelled today with all this rain. Will is off to his buddy, Jackson's, birthday party tonight and then tomorrow night he is spending the night at the Sunshine House for a sibling gathering. We, or rather, Les will be taking a bunch of girls ice skating tomorrow to celebrate Heidi's birthday-after her driver's test, I'm sure! Sunday is Will's basketball party. Heidi is still practicing basketball for the all-star state tournament in Savannah. Her team (surprisingly) won 2nd place last year and I expect they will do well again.
Our awesome, awesome nurse Dawn called to let us know that her sweet boyfriend is shaving his head for St. Baldrick's
. Thanks, Dennis, for helping the kids. Please visit the link and make a donation if you can.
We will have Ryan's labs drawn this afternoon at Coach Gary's clinic to make sure they are high enough to start chemo on Monday. I am looking into a vitamin supplement to try and improve his marrow. I am on the schedule for Monday for chemo again. I do not look forward to starting again, but neither do I want to delay. It seems like such an uphill battle right now. We do keep moving, though. One day at a time.
Thank you for your prayers and for taking this journey with us. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, February 19, 2008
Got any good drugs?
Another quick update. Ryan and I both stayed home on the couch this morning. I woke up feeling very achy and flu-like. Ryan's cough was very croupy so we gave him another day to rest. My mom came at lunch and lured him to the farm for biscuits and gravy. I slept alot. He will definitely be back at school tomorrow. I hope to be. Still no sign of Mack. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, February 18, 2008
Mackie, come home
We are moving slowly, but things are looking up. Ryan and I are both feeling better today. It was very nice to have a day off of school. We should both be back tomorrow. Ryan has a check-up tomorrow with Dr. George. We didn't start his chemo today, but will see what they say tomorrow. The only thing that hasn't turned around from the weekend is Mackie's disappearance. He disappeared in a flurry of activity on Thursday and we haven't seen him since. He has on a collar with our number so someone should call if they find him. We are going to make some fliers and put around. Hopefully, he will turn up. That is all for now. Just a quick update! Thanks for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, February 17, 2008
This may sound crazy...
... but the good news is that Ryan has the flu! They are headed home. No sense hanging out at SR. There really isn't anything they can do. So long as they know the cause of the fever, he is ok to come home. Hooray!! He did get a good night's sleep. I talked to him early this morning and he was just a chatterbug! I was in the ER at St. Mary's until after 2 am. Ugh! I haven't been doing a very good of drinking fluids to wash the chemo out of my system. I will be in touch with Emory today. I just feel like dirt, and let me just say that I don't like it! Today is going to be better though because my family will all be under the same roof. There just isn't any better medicine than that. Thank you for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, February 16, 2008
About 3pm today Ryan was sleeping and woke up with a 103 fever. We shot back down to Scottish. Ryan hates having to check in through emergency. It takes soooo long. We ordered Chinese (all his favorites) and had a good dinner in an ER room. About 9:30pm we made it to the new Aflac floor, wow! it's very impressive. The rooms are double the size of the 3rd floor, flat screens, PS3's, accurate heating controls, soft parent's bed! recessed un-intrusive lighting, desk. It is so nice. I'm telling you all this as Missy sits in emergency in Athens (about 60 miles away) with her friend Karen. She is having severe abdominal pain. It's about 10:30pm right now. She will call with news as she gets it. It would be nice to be in two places :( Love Les, Missy, Heidi, Will and SuperRyan
Friday, February 15, 2008
Ryan made an amazing turn a round. After his initial 103 fever went down, it never came back. I have to say that our nurses on the second floor were wonderful. I think Erica had called over and given them the heads up that there was a couple of ornery guys coming to stay! So it was a record, one night in the hospital. Nanny and granddaddy stayed with Ryan while I went into work for a while today. Smith popped in for a visit and so did Kelly. I did take a quick tour of the new Aflac floor. The rooms are very large and beautifully finished. They come complete with flat screen TV's and Playstations! I'd love to never have to stay there!!! Ryan's picture hangs perfectly in the hall, his quote on the bottom reads " I'm happiest when I'm with my family"... I am happiest when we're all at home...
Love Les, Missy, Heidi, Will and SuperRyan
Thursday, February 14, 2008
No rooms available in the new Aflac ward. We will be headed, (severely neutropenic with ANC less than 50) to another floor. Hopefully with nieghbors that are not infectious ! I am not to happy about it but there is nothing we can do.
Whats that suitcase for...
Ryan was feeling a little lethargic last night. We gave him a Tylenol and hoped a good night sleep would turn him around. At 2 am, he hit 102 so we new the trip to Scottish was inevitable. One more Tylenol to get him through the night just so we come check in at the clinic where the best team in the world could look after him rather than head out in the middle of the night and be admitted to emergency. We always hate having to go that route. I had told him we were headed to the clinic to get fixed up, he immediately responded with, " we're coming right back, right? I said " I sure hope so" ! Then he asked the obvious, "what's that suit case for then?" Oops. We were whisked right in at 9 am and started on antibiotics. Labs confirmed that his counts had bottomed out. I am excited to move to the hospital. The Aflac floor is now on the 1st, having just completed the move from their long time home on the 3rd. Ryan's portrait is apparently hanging over there also! He is getting blood right now and sleeping peacefully. We will likely be here at least a couple days. Love Les, Missy, Heidi, Will and SuperRyan
Wednesday, February 13, 2008
We are doing good!
Yes, finally a picture of our SuperRyan! This is him and his buddy, Matt, at Awards Day last week. As you can see they raked them in. You can also see that his hair is coming back. He looks great. He has finished two rounds of the oral vp-16 and goes back next week for another check-up. I don't know when they will repeat his scans, but I am thinking it will be soon. He is playing soccer and having a good time. All the kids are playing. Heidi is actually playing both JV and Varsity at Apalachee. The Varsity had a pre-season scrimmage on Saturday, JV won their game on Monday, and she played Varsity again last night. She was so excited that they let her start the game!! We missed the very beginning. We were running about 5 minutes late from Crawford Long. Les and I ran down there (just a quick jaunt, don't you know?) to get my last drain yanked out. HOORAY! I am officially drain-free (after a mere four weeks). I am really hoping that after the little hole closes up in a day or two, I will really feel like I can move around more, and that will definitely make me feel better.
I went to Emory on Monday and met with the onocologist, Dr. O'Regan. She really wants me to have four rounds of doxorubicin (adrimyacin in the breast cancer world) and cytoxan to try and get rid of any microscopic disease hanging around. She feels this is my best chance of not relapsing. So we got started on that right away. The doxo is just a push and the cytoxan runs over an hour. I will go every other Monday again. We got the Neulasta delivered to the house and Les gave it to me last night. Again, I learn more empathy for Ryan. I didn't think that was still possible. That little shot burned-and for awhile! It was great that Ryan was there to hold my hand and make me feel better. It has been very important to him that he comfort me during all of this, and he has done an awesome job.
The nausea hasn't really set in. They expect it to in 5-7 days, which means the weekend. Yea! I did come home with four nausea drugs that I have been taking-except for the phenergan. It just zonks you out. I really haven't needed it-maybe this weekend! So, we are trying to keep all the routines going. Heidi has yet another soccer game tomorrow. JV this time. I am working, and have been for a while. My job is really not physically demanding. I see special-ed hospital-home bound students in the mornings and do my speech-kids in the afternoon. I only have groups of three of them so they are all very manageable. The teachers at Bethelehem are all so very supportive and keep me lifted up everyday, and for that I am very thankful.
I do want to ask for prayers for two of our cancer friends. Luke Webb is a friend of ours from the Lighthouse. He actually relapsed last year after we met them. They live in Florida, and his mom Carrie is taking care of him and his brother by herself. The chemo he has been taking isn't working anymore and they put him on Ryan's chemo, but it didn't do too much either. She is taking him to CHOP in the next week or so. Please pray for them to get some good answers and a new direction that will lead Luke back to NED and offer them many more years together until we can find a cure. Also, another NB mom could use your prayers. Her daugher Sarah is on a maintaince chemo similar to Ryan, and she is trying to get a definitive diagnosis on breast cancer. I should say on not having breast cancer. Any words of support you could offer would be welcome, I am certain.
Thank ya'll for checking in on us and for your many prayers and kind words of support. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, February 07, 2008
I wish I had a picture of Ryan playing soccer to post. I will try and get a good one next week. He started practice on Tuesday and on the way he said "wouldn't it be great if we got there and my coach was Coach Mark?" He seems to have a good coach, but, oh yes, it would be great if his coach were Coach Mark. He is so happy to be playing again and is already looking forward to swim season. He has two more days of chemo this round and then gets a week off. He goes back to the dr for a check-up in a couple of weeks.
I went to see my plastic surgeon, Dr. Losken, today. They took all the tape off my stitches and started filling the expander. It was weird that I could feel it in my elbow when the nurse accessed the port on the expander. I guess there is a nerve that connects the two. I can't believe it has been three weeks since my surgery. I still have one drain. He told me today to slow down so it would stop draining off so much fluid. Slowing down is hard for me. We have been having some warm days and it has been nice to get outside and walk just a bit. I really know what Ryan meant when he said he just wanted his life back. I feel the same way. I go back to Emory on Monday and hopefully, will start chemo. Sooner started, sooner finished. I don't know yet how much or for how long yet, but I'm sure I will learn all that on Monday. I am pretty sure I will be taking Doxorubicin and Cytoxan. Ryan has had both drugs and we are already aware of the side effects. We just have to forge ahead and get through it-and we will. Thanks for checking in on us and for your prayers, love, and support. Love, Les, Missy, Heidi, Will, and SuperRyan