- 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, April 30, 2009
The right medicine
The right medicine is what we have found. We have substituted his nasty, make me mean, Keppra
, with Trileptal, another anti seizure drug. This morning he is much more agreeable ! even though at this very moment we are still at the hospital. We moved him on to 50ml Fentanyl
patch for 24hr medication and he gets Toradol
every 6 hours on top. In short, he is feeling much improved this morning !!! He got out of bed at 7 and started packing. The first time he has walked since we checked in. Yesterday, you couldn't even touch his legs. He has ordered breakfast and is patiently waiting. It is sooo
good to see him feeling better.
Missy has gone to Emory with her friend Karen for Chemo so we likely won't see her until this afternoon. She spoke with Heidi and Will last night but we won't be discussing this with Ryan. He is too stressed and his mood needs to get back to his normal, lighthearted and carefree, funny self. Thank you for all the thoughts and prayers that been lifting us up. Les, Missy, Heidi, Will and SuperRyan
Wednesday, April 29, 2009
Ryan is our hero
Doctor George told us the news this morning that Ryan is out of treatment options. The bone scan shows the disease has progressed throughout his body and that his poor counts cannot recover from any type of chemotherapy required to simply battle it. He is in severe pain as the time wears off on his medicine. We are spending the night here again to get blood and platelets. The extra time will also help with the transition from iv pain killers to oral. Please pray that we have the ability to make Ryan as comfortable as possible. That he can have fun with his friends and family and we have half his strength and fortitude to walk bravely beside him. Les, Missy, Heidi, Will and SuperRyan
101.8 - Oh no
Did we just buy ourselves another day ???
Tuesday, April 28, 2009
Ryan is "fit to be tied"
Nothing is going his way today. First the Neurological team has slapped him back on Keppra and B1 for seizure prevention. He adamantly denies ever having one and is positive there isn't one in his future. He has let everyone here know, he is here for "PAIN, NOT SEIZURES !!" We made it through his Nuclear Bone Scan. He did sooo well staying perfectly still even though we can't eliminate all the pain. I have been doing my best to convince him he WILL be doing the MRI at 5. This has been difficult to say the least. Now Dr. George comes in, one hour before the MRI and tells us we are not going home ! He has assured us that we will be first on the checkout list in the morning. Can you imagine the state of his PO'd-ness after that! (that damn Keppra doesn't help either).
No results back yet from the bone scan but I could see it was not good. Dr. George is hoping to have both scan results first thing in the morning. Please send Ryan the strength to just get him through tonight and him finally getting home should carry him on tomorrow. Oh how I wish I had some good news, just once. Ryan has so many friends that care so much about him out there, for that, we are very thankful. Sincerely, Les Missy, Heidi, Will and SuperRyan
Monday, April 27, 2009
What a stressfull day
Thank you Erin for providing our friends and families a "real time" update first thing this morning. Things were moving so fast down here at Scottish Rite.
The crazy thing is, I would have normally waited to take Ryan to the clinic until after 8am. This saves Ryan all the hassles that the emergency team put him through. Today though, something just made me say, "we'd better go now" 3am. What luck to be in Emergency when his seizure happened.
Nothing seemed to be out of the standard routine. We were in a dark room and it appeared Ryan began to stretch and turn to look at me. His eyes were open so wide and I made a quick quip. After a couple seconds of processing and I realized the hollow look in his stare. I hit the call button and opened the door yelling code blue. A four person staff was in the room, working in under 10 seconds. It is scary to be there and almost as scary reliving it right now. The seizure and morphine combined to put him out for a few hours of much needed rest. Missy made her way down to the hospital before 9am. All the tests seem to show stable signs. He will start back on the anti seizure medicine, Keppra. He is in incredible pain in all his major muscle groups, a pain that morphine hardly eases. He has it every 4 hours. Kristen Connor popped in to see if there was anything she could do , and Smith and Julie stopped by to help cheer him up. They ended up driving Missy and her car home tonight, as Missy is hardly doing much better than Ryan. We are hoping to be out tomorrow and back at home, safe and sound. Thank you all for your kind words, thoughts and prayers. Sincerely, Les, Missy, Hedi, Will and SuperRyan.
Missy called me this morning and asked me to update the blog. Ryan spent yesterday on the couch with severe leg and arm pain and could not keep anything down. He started to run a fever in the middle of the night, and Les took him to Scottish Rite at 3 AM. Missy told me that she talked to them earlier and they were both in tears. Ryan had a seizure at some point after arriving at Scottish Rite. His pain is so high that they have basically knocked him out with strong morphine. They will be staying in-patient at Scottish Rite until the pain can be controlled and a plan formulated. Missy is driving there right now. She asked me to post this information and to ask for your prayers. They are obviously very worried.
Friday, April 24, 2009
Somebody left me some flowers in all my pots while we were gone. What an awesome surprise to come home to!! Please let me know who you are cause it'll drive me nuts not knowing who to thank!! They are just beautiful, and they're out by the pool, too. Thank you so much. We came home a day early. I had to call my doc Wed. afternoon as I was in so much pain and couldn't get any relief. She thought it sounded like a kidney infection and wanted to go to the ER so I could get an antibiotic. My hgb was only 6.4 so they kept me overnight and gave me three units of blood. I am so glad that drive home is now behind us. Les took Ryan to the clinic this morning to see what his counts are. His gums have bled a little bit so he may be needing some more platelets. I changed my appt back to today so maybe I can get my chemo. Karen and I are gonna drive down and check it out. Thanks for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, April 22, 2009
A week without a hospital, not quite...
Missy has had a lot of pain in the left kidney area the last couple days. She called her Dr at Emory and they suggested a quick trip to Emergency, haha
2 hours in the waiting room, 1 hour in the emergency room, then the Dr finally came in. They shot her down to RT for a CT scan and a couple of x-rays. Her initial blood work came back very low, translation, spend the night. She will be getting 3 units. We are still awaiting the rest of the results. I just made it back to the Hotel. The kids hardly new we were gone. They are so independent
. They ordered room service and are watching Idol ! Great kids (most of the time :) I will more as I get it. Les, Missy, Heidi, Will and SuperRyan
(who is doing fantastic)
Tuesday, April 21, 2009
more pics of day 2
This has been how I've felt a few times today and yesterday!! and NO, Les wasn't on the log ride with two hot girls by himself. Will was in front! :)
Our only bummer is that we didn't win a gigantic "Balto" at one of those rip-off midway games!
Pictures from today. We had a great time at Universal's Islands of Adventures. We got totally soaked on one ride. Oh my Goodness!! Was I really happy for just a bit that I didn't have hair? Les took the kids to get some dinner and I am resting. My mom made an appt for me today for accupuncture on Saturday. I never thought I'd try it , but I'm getting pretty excited about the thought of pain relief. I'll let you know. I'm gonna add a couple more pics. It's so slow if you do more than three. Love, Missy
Monday, April 20, 2009
PICS FROM UNIVERSAL
It's a shame the kids don't really know too much about Jaws, or Beetlejuice, or ET. I think their favorite rides were the Simpsons and the Mummy.
This is Balto!! We've known him since the day he was born and have been able to play with him and watch him grow. He's really only about 5 weeks old, but his mom is pretty much done with him and his siblings. He was a gift from Rick and Barre'. We're missing him already.
His mom is a Siberian Husky (maybe 35 lbs) and his dad was a neighbor German Sherpherd. All I know is Sandy's daddy was a German Shepherd and we got her Easter weekend, too, and she turned out to be the best dog ever! So I'm taking that as a good sign.
Wednesday, April 15, 2009
Looking for good things.
Ryan filled up his quarter book yesterday. He was pretty happy about that. Can you tell? I think he loved being FINISHED ! The other picture is of my tulips Les bought me. Aren't they beautiful? I love bright yellow tulips. They've done their fare share of perking things up around here! I'm hoping tomorrow is a better day. I've been sick every day and haven't been able to keep anything down. I've been trying different pain meds and nausea meds, but haven't had much luck yet. Maybe tomorrow?? Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, April 11, 2009
Surprise, Shock, and Dismay!
It's been a crazy past couple of days. The SURPRISE is that Ryan is at the beach with the Lighthouse. As we headed down Thursday morning, we got a call from Smith that he was gonna go down for 3 days, so we offered our baby up for some fun!! My mom met us at Gwinnett with him. He still wasn't feeling that great, but he was pretty excited. He's coming home tomorrow. The SHOCK is that Les' high school friend who has been in Tanzania doing some missionary work has suffered a major stroke. How can that be?? We are still working on the details as you can imagine. I know they are trying to raise money to get him back to Canada, and I hope to post some of that info we maybe we can help. The absolute DISMAY is in the passing of Erin Buenger. I haven't thought of much else in the past couple of days. Please visit her website and offer some encouraging words to her family. She was such a full-of-life kind of girl that just had a way of touching your heart.Today promises to be a busy day with soccer and cleaning up around here. I'm hoping some flowers are involved! Please keep praying for us and for our friends. Love ya'll! Les, Missy, Heidi, Will, and SuperRyan
Monday, April 06, 2009
Ryan and I have both just felt like dirt for several days. The pain patch seems to be working on his leg pain. I've emailed for a pain med for me. I can't take anything with tylenol or motrin. Even some of my prescription meds have tylenol, so I've been avoiding those, too. I think the nausea is the worst part, though. Just nothing brings any enjoyment, and that has been tough. Please pray we feel better soon. Love, Missy