- 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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Tuesday, October 28, 2008
A Long Day
Night has finally come and things have finally slowed down. Our flight today was delayed three hours for bad weather in NY. It is soooo cold here, and was raining when we had to find our way to Sloan. He has finally eaten something (he complained the pound cake just wasn't like his Nanny's) and will be getting platelets soon. He will be getting the usual pre-meds this time to avoid those nasty hives. I will post again tomorrow after the injection. Please pray that he has a great sleep tonight (me, too) and the injection goes smoothly tomorrow with no pain or nausea, or fever, either. Thanks so much for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, October 26, 2008
Home again. ah!
So Sorry for the delay in posting. We made it home late on Friday-all 5 of us. Friday was such a long day. Ryan got to come back to the Ronald McDonald House on Thursday after the the PET scan. We rented a movie and ate popcorn. It was great! He ran a little bit of fever during the night, and Les and Will took him back Friday morning. He got an IV dose of antibiotic, another PET scan and they let him go home. I got about a 40 minute notice that the Super Shuttle was picking us up and Heidi and I hurried to clean everything up and get packed. We rode around on the shuttle for 2 hrs., then our 5:00 flight got pushed back to 6:15, and we might have gotten in the air by 7:30. My poor Dad was hanging out at a Waffle House near the airport to pick us up for what I'm sure felt like forever. It was definitely great to be home again. Heidi and Will both played soccer yesterday, and Heidi had a game to ref. I had looked forward to going, but Ryan and I stayed home. We both felt pretty rotten all day. Thank you, everyone who brought food and came to help. Tomorrow I have an appt. with my dr. at Emory. I am hoping to get some answers to this cough that just won't go away and some good medicine before Ryan and I head back to NY on Tuesday. He has felt much better today. Please pray for a smooth trip for us, and for all he will have to endure. We are hoping for no fever, nausea, or other bumps in the road. Thanks for taking this journey with us and for your never ending support. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, October 22, 2008
No fever but very nauseous. We were waiting in Nuclear med when Ryan started throwing up. I grabbed the closest trash can and saved a greater mess on the him, the wheel chair and the floor. We got him situated in the scanner and about a quarter of the way through the scan it happened again. He is very drugged up right now, so I reached the bucket into the scanner and caught it all. He never missed a beat and the Physicist said "we're doing good, let's not stop now". He finished his scan 20 min. later, then threw up one more time. He is back in bed now, resting but still very nauseous. If this is the worst...Thank you !
All has gone well today with the 3f8 injection. He got platelets again, but no reaction this time, thanks to pre-meds. An entire team came in and drew off some cerebro-spinal fluid, injected the antibodies, and flushed with his his own fluid. It might have taken 30 minutes start to finish. Ryan sat up in his bed eating Lay's potato chips the whole time. Then he finished off one of NY's great warm salty pretzels. It's been about an hour and a half, and no nausea or pain yet, but we don't want to jinx ourselves. We're still watching him closely and expecting anything can happen at any time. He will have a PET scan in about an hour then one 3 hours after that to see where the antibodies go and that they do disperse. He'll have another scan tomorrow around 11 and then maybe discharged back to the Ronald McDonald house. He is happy about that. We will be back again on Friday then fly out late afternoon. When Ryan's feeling good, we are all doing well! Les, Missy, Heidi, Will and SuperRyan
Monday, October 20, 2008
Inpatient bound tomorrow
Ryan checks into Sloan tomorrow to gear up for the 3f8 antibody test dose on Wednesday. We are hoping and praying that the pain will be tolerable and nausea kept to a minimum. The easier it goes this time will surely help with getting him back up here for the next round. Missy will be coming up with him next Tuesday through Friday.
Busy day !
We met with Ryan's NY buddy Jon, for lunch, then toured "ground zero". We ferried around the Statue of Liberty and finished the day with a theme dinner at the "Jekyll and Hyde" restaurant. Lots of fun!
Please keep Ryan in your thoughts and prayers the rest of the week as we move into the unknown for us. Les, Missy, Heidi, Will and SuperRyan.
Sunday, October 19, 2008
All Together, again.
The weather has turned colder up here over the last couple of days. It was perfect for lunch and ice-skating at Rockefeller Center. We walked down to Times Square just long enough to pick up Ryan a pretzel and then caught the subway back to the Ronald McDonald House. Ryan has loved having Will here to play games. Not sure yet what tomorrow holds. I know the kids want to see Ground Zero and the Statue of Liberty, and, don't forget, Central Park. Ryan has been all smiles today, and for that we are very thankful. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, October 18, 2008
A Couple of Quacks!
This was yesterday on our "Duck Tour" in Philadelphia. We decided we needed a change of pace-something relatively slower. The boat/truck, actually cruised around the Delaware river! It was a nice day with a relaxing double decker tour around the city also, we didn't get see too much up close though. Ryan is not into a lot of walking and time was short. We are off to meet Les' cousin, Christina, in Greenwich Village. We're going to walk around Soho, too. Heidi has a soccer game this morning. I wish I had booked their flight earlier in the day, but at least, they will have plenty of time to get their stuff together and get to the airport. We will be so glad to put our arms around them and see their smiles. Have an awesome day! Les, Missy, Heidi, Will, and SuperRyan
Thursday, October 16, 2008
We finally hit the town!
We made it down to Times Square last night. OMG, I am officially old! We braved the subway and walked around a bit, grabbed a bite to eat, and headed home. We had to be at Sloan this morning at 9:30 for a brain MRI (which was late), the last of the flow study scan (also late) and then ran upstairs real quick to get deaccessed. Ha! Ha! Joke's on us, I guess. We left around 5:00! Ryan was pretty mad about it all. We were supposed to meet his pilot buddy, Jon, for lunch, but had to cancel. We found out he had to get platelets before he could be registered for the study. The platelets only took about an hour, but he started breaking out in hives about the time the platelets were done. He got two IV meds to bring that around. Our nurse, Terri, was wonderful and patient with him. He was not a happy camper! I spent the next hour or so at the drug store around the corner from the Ronald McDonald house trying to get prescriptions filled for us. Dr. George, Dr. Rapkin, and Dr. O'Regan have all been so great (and Erika and Liz) helping us get prescriptions filled so our insurance would pay for them. I have a terrible cough still, but hopefully this new medicine will help even more. Ryan has to start taking the dreaded SSKI every day while on the study. He is so great about it, and doesn't complain a bit. It is basically iodine to protect his thyroid from the radiation. Yucch!!! He also has to start taking a medicine to help his thyroid function properly. It is in pill form, so that shouldn't be a big deal. key word here is "shouldn't". We are getting excited about Heidi and Will getting here on Saturday. We are thinking about going ice skating at Rockefeller Center on Sunday. Ryan doesn't have to be back at Sloan until Tuesday at 1:00 so we are going to pack in as much fun as we can. The picture is from last night. I don't know if you can see my mysterious black eye or not. It appeared after my massage at family camp on Saturday. Just something else in my back-pack! It only looks bad, it doesn't hurt a bit. Thanks for checking in on us and for your prayers and encouragement. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, October 15, 2008
We had a great time at Family Camp last weekend, as usual. We missed Heidi, as she had an important soccer game in the middle of the day on Saturday. Thank you, Camp Sunshine!
I had great plans to post with great pictures that "we made it!", but our pace just hasn't let me. And, just adding this one picture has taken forever. I will try and add more later. We took this one yesterday in Central Park. We got here safely on Monday and are settled in at the Ronald McDonald House. Tuesday at Sloan went pretty smoothly with a spine MRI (he has to lay completely still for an hour) and a CT. We met with the nurse practitioner who was really nice and didn't seem to mind a bit when Ryan wouldn't even peek from under his blanket. We managed to get a jogging stroller here at the R.M. House so he doesn't have to walk to the hospital, which is awesome! He looks pretty funny with his blanket draped over the entire thing. He is loving watching u-tube on Les' i-phone under his blanket. Today, they will access his Ommaya port and inject a radio-active tracer and then scan periodically to make sure it is dispersing the material like it should for the treatment. On Thursday, he has a brain MRI and a final nuclear scan then he'll be done until next Tuesday. We are making mental plans for when Heidi and Will get here on Saturday. He has a list of things he wants to show them, and I am dying to see the Statue of Libery. We'll only have a couple of days to take in as much as we can together. Ryan will have to be inpt. Tuesday night for the rest of our stay. We will update again when we have more information. Thank ya'll so much for your prayers for Ryan and our family. Your messages and your support give us much strength that we need. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, October 12, 2008
Not a good scan
Ryan's scan on last week has shown uptake in his right leg. This will mean that during our break from treatment in NY, Ryan will undergo more radiation and if possible, chemo here in Atlanta. I just can't imagine what goes through his little head with this never ending treatment...
We did have a great time as usual at Camp Sunshine this weekend. It is just soooo
hectic it hard to think straight. Worrying that everything is done and up to date, that Heidi and Will are OK
, that they are going to have a smooth trip to NY next weekend to meet us.
I have to thank all the friends of ours
and Ryan's who have helped us out. Everything is so very much appreciated
Well, we are finished packing and will be flying to NY in the morning. Thank you again, Les Missy, Heidi, Will and SuperRyan
Wednesday, October 08, 2008
What a day!!
Ryan stayed at school till 11:30 today, which is the longest in the last week and a half. He missed everyday last week. I had an appt. with my dr. at Emory, and thanks to my friend, Linda, he was able to camp out at her house during my appt. We made it to Scottish Rite at 3:30 for a 15 minute injection and left at 6:15. It was soooo long and cold sitting around in radiology. The highways were packed with cars so we stopped at I-Hop for some blueberry pancakes, and finally made it home at nearly 9:00. Needless to say, we are pooped! We are all excited that Daddy is coming home tomorrow. He is going to be home in time for Ryan's MIBG scan. Please pray for a dark scan. I will go in feeling better knowing his marrows are clear, but it is still always a very nervous event. We have Family Camp this weekend at Camp Sunshine and are looking forward to some great time together. Thanks for checking in on us and for your prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, October 07, 2008
Good News and very, very sad news.
The good news came in an email this morning from Erika. Ryan's marrows are clear. Hooray!! With all this sleeping, we have been really worried about him. We know this is typical, but it is still hard to see him feel bad. It is usually so comforting to be with him because he usually feels pretty good. We haven't been too comforted lately.
Shortly after that, I got an email from Les. He is in TX on business and got a call from his mom that our nephew, Jerry, had a heart attack and passed away in the early hours this morning. Please pray for his wife and his little 4 and 6 year old boys. Jerry was only 28 and in the midst of, what I'm sure were, the best days of his life. I wish that Les and I were able to go up and be with the family, but with Ryan's scan on Thursday and our trip to NY on Monday, it seems crazy to even consider it. Please pray for all the Morgan family and the McGinnis'. The next week is going to be so difficult. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, October 05, 2008
Did we scare you? We scared a lot of people Saturday night at the Night of Screams haunted house. You'll just have to imagine how scarey Will and Mom were! and, yes, they had make-up, too! Thank you, Rob, and all the other spooks! We had a great time, but sure were tired today. Speaking of being tired, Ryan has been sleeping a lot this past week, and we're told that could continue for another week. It is a common side effect from his radiation. We were told it could happen 4 to 6 weeks after radiation. It figures Ryan would stretch that out to 7! We've got a busy week ahead getting ready for NY. Between Ryan and mom, we've got 4 trips to Atlanta to see the doc. Thanks for checking in on us, and thanks for your many prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, October 03, 2008
Ryan will have his MIBG
scan done in Atlanta next week. The following week we will head to NY to have the remaining tests completed. The week after that we will run a test dose of the 3f8 antibodies. Then, finally, treatment begins.
MRI Spine Scan Tue, 10/14 @ 8:00amCSF
Wed, 10/15 @ 10:30amCSF
Flow Scan Wed, 10/15 @ 11:00amCSF
Flow Scan Wed, 10/15 @ 2:00pm (@4 hr scan)
MRI Brain Scan Thu, 10/16 @ 9:00amCSF
Flow Scan Thu, 10/16 @ 11:00am (@24 hour scan)
CT cap Thu, 10/16 @ TBD
Inpatient at Memorial Sloan,
10/22-24 3F8 inj
Inpatient at Memorial Sloan,
10/29-31 3F8 inj
11/05-07 3F8 inj
11/12-14 3F8 inj #3
6 week break for treatment in Atlanta
Inpatient at Memorial Sloan,
This is going to be a really tough schedule on Ryan. When you have to look ahead like this, it just so hard to imagine doing it. With the good Lord and great Doctors with us, we will come out the other side of this course, then begin to plan the next one. Ryan is the most incredible fighter, brother, son, comedian and hunter!
you will ever meet. We are so unbelievably grateful to have him in our lives. Wish us strength, wisdom and patience. Les, Missy, Heidi, Will and SuperRyan
Wednesday, October 01, 2008
New Schedule (maybe)
We are trying to get Ryan's MIBG injection and scan done here in Atlanta, next week. We will try to accomplish all the other tests he needs, the week of the 13th, in New York. This will eliminate at least one trip. It is going to be hard enough to get him to go several times. Thank you for all your support. Les, Missy, Heidi, Will and SuperRyan.
Got any spare Delta tickets? :)
Finally have a schedule !
10/08-11 CSF flow study, MRI brain/spine, MIBG, outpatient at Memorial Sloan,
Inpatient at Memorial Sloan,
10/14-17 3F8 inj #1
10/21-24 3F8 inj #2
10/28-31 3F8 inj #3
6 week break for treatment in Atlanta
Inpatient at Memorial Sloan,
3F8 inj #4
3F8 inj #5
Finished by Christmas