Super Ryan

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

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

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 !

Busy day !

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

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

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!

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

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

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

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

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 @ 8:00am
CSF Flow Inj Wed, 10/15 @ 10:30am
CSF Flow Scan Wed, 10/15 @ 11:00am
CSF Flow Scan Wed, 10/15 @ 2:00pm (@4 hr scan)
MRI Brain Scan Thu, 10/16 @ 9:00am
CSF 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 Test

Inpatient at Memorial Sloan,
10/29-31 3F8 inj #1
11/05-07 3F8 inj #2
11/12-14 3F8 inj #3

6 week break for treatment in Atlanta

Inpatient at Memorial Sloan,
3F8 inj #4
3F8 inj #5

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.

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.

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