Journal History

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Friday, May 2, 2008 10:11 AM CDT

Hello to anyone out there thinking of Eion today,

It has been 6 long and very painful years since our Eion left us. Some days it feels so long ago and some the pain is so intense I think I might go crazy. I am about to finish my 1st semester of nursing school on Monday. I have 3 semesters left. I look forward to being the best nurse I can be in honor of Eion. The nurses we had could make or break our many days in the hospital. I want to be the nurse that makes a person's day much better.
Eion's siblings are getting so grown up. Gabriel will be graduating from high school May 31st, Ellie is a sophmore and still way into poms, Quin is in 4th grade and Kellan is in 3rd grade. Quin and Kellan talk about Eion all the time and even name Webkins after him! They are doing so well in school as I know Eion would have. I am so blessed with smart and creative children! School functions are still really difficult for me because Eion wanted to go to school so badly.
It still makes me really angry that Eion had to leave us, but I'm trying really hard not to be an angry and resentful person. Some days go better than others. I'll just keep chugging along...missing Eion....and try to be the best person I can be in his HONOR.

Thanks to all who still may remember.... Angela

Tuesday, May 2, 2006 3:51 PM CDT

Hello to anyone that remembered Eion today,

Well here we are, 4 years after our precious Eion left us. It seems to long ago, yet the pain and yearning for him is still so strong it can be paralysing. It is amazing to see how much just a few years make in children. Gabe is finishing his sohomore year in high school, driving and 6'1 now. Ellie will be graduating from Junior High getting ready for her journey into High school. Quin and Kellan are so smart and funny. They love school and are exceling. They are brilliant students and Kellan has actually been placed into the gifted program at her school. I am still in school working toward a degree in nursing and working full time at Good Samaritan Hospital in ICU. Going to school and working is very challenging and I often wonder if it is where I am supposed to be in my life, and then, I will have a shift that I work with patients who really appreciate me and that I know I have made a difference in their day. I remember the people that did that for us when we were in our time of need with Eion. I want to do something meaningful with my life in honor of the life Eion wasn't able to experience. I know he would have done great things with his life, he was an exceptional spirit in this world.
John is chugging along with cooking, real estate, Xango and side jobs. John and I will be going on our belated Honeymoon next month to Switzerland. We are looking forward to experiencing another country.

All in all, we are blessed, we work hard and have remember that our lives need to go on without Eion no matter how hard it is to do that. Our Eion will be in our thoughts and hearts forever. I just pray that the pain of losing him will relent someday. Maybe next year or in 10 years it won't be as harsh as it still is today. Who knows.

Hope all is well for everyone out there.

Thanks for any prayers of strength you may want to throw our way.

Love always, The Rileys

Sunday, September 25, 2005 1:38 PM CDT

Hello,

It's Eion and Quin's birthday today. Quin is 8 years old, in 2nd grade, into nintendo and a math and spelling whiz. He is getting so big. Gabe is 16 now, a sophmore in Highschool and driving. Ellie is 14, still in poms, and in 8th grade. Kellan is 7 (on 10-1), in 1st grade and reading.

I'm working at Good Samaratin Hospital in the Critical Care Dept as a tech and secretary full time while taking classes toward a nursing degree.

John is still cooking, although now at the Plainfield High School close to home. He also has his realestate appraiser license.

We miss Eion just as much today as the day he left us. We talk about him all the time. He remains in my daily thoughts and I think I am just getting used to the grief. It has become a part of my life. I hope I won't feel physically and emotionally drained for the rest of my life, but if I do, I guess I will get used to it.

Living with the thoughts of Eion's death, fantasies of what life would have been like if he were still here are just a part of daily life.

We are survivors and thanks for your prayers. Hope everyone out there is doing well.

Sincerely, Angela Riley and gang

Monday, May 2, 2005 8:17 AM CDT

Hello,

It has been 3 long, sad years since our angel left us. It seems so long ago and at the same time it feels like it just happened. The pain of what Eion went through in his last days is still in my thoughts nearly daily. I know he isn't in any more pain, but what he had to endure was purely torture. I think of him every single day all though more days are of fond memories than horrifying flash backs than there used to be. We are going to have a little ceremony at the cemetary today.

The rest of our family are doing well. Quin and Kellan are getting big and really enjoy school. I worry about Quin getting along without his brother but he seems to have peace about it. Quin and Kellan talk about Eion frequently and watch home videos often. For me, the school events for Quin have been the most difficult. I always end up crying at concerts and teacher conferences. I am still very angry that Eion didn't get to experience those things and sometimes dream of how he would be if he were still here for them. John is still cooking and working for the Plainfield School System now. I work at Good Samaratan Hospital as a CNA in the ICU department. I am taking classes working toward a degree in nursing. Working in the hospital has been therapy for me, I really enjoy bringing a little comfort and humor to patients. Gabe is in HIGH SCHOOL now! I am way too young to have a freshman in high school...lol. Driving next year? YIKES!! Ellie is in 7th grade and getting tall. She made PJC poms again, this will be her 4th and last year before high school. DOUBLE YIKES!!

Grief is a very hard and exhausting process...it seems like it will never let up. The pain of loss and yearning for Eion are still very strong. We are blessed with 4 wonderful, smart, great kids, for that we are thankful. We will keep moving through the grief and someday we will be together again.

Thank you for your thoughts and prayers,

The Rileys

Thursday, September 25, 2004 6:13 PM CDT

SIGH...
Happy Birthday my Baby Boy,

This year is harder than ever. I have thoughts of you every day nearly every minute. My heart yearns and aches to see you again...hold you...sigh...The world isn't the same without you here...it's lonely and cold. We are trying to move on and for me it's an act...I can't move on...grief is so confusing and exhausting and neverending. I have dreams of you that are not exactly "happy" dreams, but I'm so despirate for you, "anything" I get that seems close to you, I am glad for. I know you are in God's hands now and in a wonderful place, but I still feel all of you're pain here on earth. I'm trying to be the person and mommy you would be proud of in Heaven, but I fall short often and I'm sorry to you and your siblings here. The world is so dark and lonely without you...but I promise I will keep trying to rise above the sadness in Honor of my undying love for you. You were and always will be my heart and soul...I dream of the day we will be together again.

Happy Birthday my Precious Angel

Love, Your Mama

Friday, May 2, 2003 10:57 AM CDT

Dear Friends,

One long year ago, we lost a very special person in our lives. This last year has been very difficult. The feelings of loss are still over powering. We think of Eion every day and long for his soft warm hands and voice. We dream of seeing him again and have nightmares of how we lost him. The terrifying memories of his last days here still plague our hearts and souls. More happy memories have been creeping in, but we pray the horrifying images will stop haunting our thoughts. We remember the many family adventures with tears of happiness and longing. Our family will be changed forever and we are trying to accept the gaping hole Eion left in our complete unit of the crazy 7 Rileys. We have come one whole year on our journey without our precious boy and realize we have many years to go before the stinging pain in our hearts begins to soften to a dull ache. We hope and believe Eion in close to us helping to comfort us. We KNOW Eion is in heaven with the beautiful angels and God experiencing the awesome place we will all visit when we are done with this earth. We aspire to be the best we can on this earth to honor his memory and look forward to the day we can all be together again for eternity this time. Love to all and thank you for your thoughts of our Eion. We love for everyone to help keep his memory alive.

Until next time, The Rileys

Sunday, March 2, 2003 2:00 PM CST

Hello again,

Hope everyone is doing okay. It sure is hard to believe February is gone already. We are all looking forward to Spring. Last weekend we went to the Dells for John's birthday again. The picture from last year is still in the photo section of this webpage. The kids brought up the fact we went last year, so we've decided that it has become a family tradition. There are so many fun water resorts there, we could stay in a different one every year for the next 6 years or more. We had a nice time and were all thinking of last year with Eion. I think we all hoped Eion was with us this year in spirit. He is so much a part of our constant thoughts. Everyone is doing fine. We will be registering Quin for Kindergarten this month, Gabe and Ellie's mid-term grades are good, John and I are just chugging along as usual. Until next month, everyone take care and maybe the next time I update it will be warm.

Love to all, Angela

Sunday, February 2, 2003 2:01 PM CST

Hello,

Another month gone by...9 months. It occured to me this morning that it will be a year soon. I am feeling a little better since our trip to Nebraska. I am still "lost" as to where we go from here. Eion's illness and death have changed how I see the world forever. I am confused about where I want to go from here. It is a struggle to stay involved in everyday life, I would much rather hide from the world, but I am fighting those urges and making slow progress. Be patient please. I have faith that we are all going to come out of this stronger but weaker first...still nursing our wounds I guess. Thanks to everyone who still gives moral support. I'm sure many are ready for us (me) to get on with it. I have done alot of reading and am working on accepting that grieving is different for each of us. It may take longer for some than others and takes as long as it takes. Hope everyone is well. Talk to you soon.

Love, Angela

Monday, January 06, 2003 at 09:17 PM (CST)

Hello,

I tried updating on the 2nd. I wrote a lengthy message then was booted off and gave up...sorry. I am writing from Nebraska. Quin, Kellan and I drove here on the 4th for a get-away. I need to be here to rest for a little bit and clear my head. The holidays and everything else have been taxing. Our holidays went fine, just the usual bustle. Hope you all had a nice New Years. I'll write again soon. Love to all. Angela

Monday, December 02, 2002 at 11:48 AM (CST)

Hello,
Here we are with another month gone by. 7 months since I've seen my precious boy. It is harder now than ever. We went to Nebraska for Thanksgiving. I couldn't help but remember the last time we went for Thanksgiving. It was just a few weeks before Eion was dx. He vomitted on Thanksgiving day, we were so baffled by it then...we had no idea it was going to be the last "normal" family vacation we would ever have. I miss him so much. 7 months isn't very long in the scheme of things, but it seems like an eternity since he died. I think I am getting angrier now. I want so hard to make the best of this, but my heart aches so much all of the time I feel like I am going crazy at times. Everyone comments on how well we are all doing, well if they could see the enormous black hole in by soul they may not think so. The only choice we have is to keep going, and I don't see that as being particularly admirable. Anyway, its our first holiday without Eion, maybe I will feel better after the holidays. Hope all is well with everyone. Happy Holidays.
Angela

Friday, October 25, 2002 at 12:55 PM (CDT)

Hello,

It's been a while since I've written. I guess I don't know what to say. The change of seasons have been hard with the cold and gray. Halloween reminds us of our trip to Disney last year. It was the trip of a lifetime we all will cherish forever!! Recently we learned of a little boy Zack in Shorewood who passed away from cancer. He was so sweet and special. It brings so many emotions back...along with the weather...I think I just have a overall melancholy attitude. Everyone is doing fine, so we must always count our blessings there. Hope everyone is staying warm and all is well with you all. We love you. The Rileys

Wednesday, September 25, 2002 at 02:03 PM (CDT)

HAPPY BIRTHDAY TO YOU...HAPPY BIRTHDAY TO YOU... HAPPY

BIRTHDAY DEAR SWEET EION, HAPPY BIRTHDAY TO YOU. WE LOVE

YOU MISS YOU MORE KNOW THEN EVER.

LOVE ALWAYS. MOMMY, DADDY, GABRIEL, ELLIE, QUIN AND KELLAN

Wednesday, September 04, 2002 at 12:40 PM (CDT)

Hello to all,
We tried to update on Monday but couldn't. Here we are again, the 2nd of September. Four eternal months. This will be an a doubly hard month with his 5th birthday coming on September 25th. Quin will forever share that day with Eion and I pray it won't be a hard day for him. We shall see. We have had a very busy month. Ellie is doing very well in Poms and we are enjoying going to the games to watch and are meeting new friends. Quin loves preschool. He goes to college with me where they have a preschool in the building next to mine. Isn't that convenient?! I broke down his first day and never saw it coming. The director looked at me a bit baffled, then I explained that Eion passed away and that it was always something he and Quin would love to talk about. They would talk about all the things they would learn and especially what they would pack for lunch. He should have had that experience... Gabe seems to be handling 7th grade fine. He will be my first teenager this month. I just keep thinking that I am much too young to have such big kids! Kellan started "dancing school" last night. She was sooo cute, but seemed more interested in the other girls outfits at times. It looks as if I will be blessed with another "social goddess" just like her big sister! John's new job seems to be going well, too soon to tell yet. Our friend Lexi had her scans and they were clear and she is offically in remission (Thank God!). Our Friend Kristy's mom passed away Aug. 8th, so we wish her strength. For me, school and work are going fine. Lately, I have been feeling like I can't remember some things about Eion like his touch or his voice, and that makes me feel so much distance from him but then I will feel a tingly-buzzing feeling especially in my legs and I know it is Eion giving me a hug. I believe he drops in and visits. No dreams yet, I'm still waiting. The bottom line is we are just hanging in there and trying to give the kids as normal a life as possible. What other choices are there? Hope everyone is doing well and Thank you for your continued interest. Journaling is a type of therapy for me. Until next time. Love to all, The Rileys

Friday, August 02, 2002 at 11:43 AM (CDT)

Hello everyone,
Today is 3 months that our Eion has been gone. We miss him so, so much. We are all still living in a fog. I can't sleep at night because images of his last days flash in my mind whenever I close my eyes. It haunts me. There could be nothing as horrifying as to watch your baby die slowly and there is nothing we could do, but watch in horror. The pain is still so strong in my heart that I feel sick to my stomach all of the time. I think I will hate the 2nd of every month for as long as I live. It just takes us further away from our precious boy. We are trying to stay optimistic about life, but there is so much sadness around us. Our dear friend Kristy is in the process of loosing her step mother to cancer, an old friend Jess died last month from cancer, Sue's sister is battling breast cancer, Sue's brother-in-law is having his second bi-pass in 3 weeks today. I guess we just have to have faith, move through life the best we can and appreciate what time we are given. Some positive things are happening in our lives. John got a new job he will start in a few weeks, I'm going back to college (10 credit hours, wish me luck), Ellie has her 1st football game for Poms on Saturday, Quin will start pre-school in August as will Gabe (7th grade) and Ellie (5th grade). Everyone is growing so fast! We thank you for your continued interest in our family and hope all of you are doing well. Please pray for strength for Kristy, Tim and Loraly.

Love to all, The Rileys

Friday, July 19, 2002 at 11:47 AM (CDT)

Hello all,
Hope everyone is having a nice summer. We have been VERY busy. As some of you know, our annual Plainfield Fest party is this weekend. Eveyone is welcome on Saturday with food and fun for all. Come whenever you want, food will be laid out around 4-5 Saturday afternoon. It will be our first Fest weekend without our boy and John and all of us are missing him more then ever. We pray he is with us although he is probably busy in Heaven with his new Angel friends. Stop by and say Hello. Love to all. The Rileys

Friday, July 05, 2002 at 11:21 AM (CDT)

Hello all,
Hope everyone had a nice fourth of July. We spent it in Nebraska on Aunt Debbie and Uncle Phillips farm. Everyone, especially the kids, had a great day. We will be coming home on Sunday. We are so glad we came. We will update again soon. Love, The Rileys

Friday, June 21, 2002 at 02:34 PM (CDT)

Hello,
Sorry it's been a while. Everyone here seems to be getting along okay. Gabriel seems sad, Quin says he misses his brother several times every day, John seems to be in auto pilot, Kellan is Kellan, Ellie is more distracted than usual, and I am basically worthless. Gabe and Ellie left for Florida yesterday for a week with Aunt Joan and Aunt Jean. They were very exicited. We will be traveling to Nebraska June 30-July 7th to visit. John hasn't been back since 11-2000. That will be fun. My sister Wendy and her 5 boys will be here for 3 weeks in July. Plainfield Fest in July 19-21. Ride For Kids Brain Tumor Fundraiser is July 21st. Pom-Pom practice starts July 15th with the first game Aug 4th. We are camping out with the Ciaglias July 27th at Jellystone Park. So you see, we have some fun things planned to keep us busy. No matter what, the truth is that grieving sucks and thoughts of Eion creep into every aspect of all of our lives. All in time.
I bought a daily prayer book recently that looked interesting. I flipped back to when Eion died and found that the poem was very appropriate for that day. Here it is.

God, make me brave for life,
Oh, braver than this!
Let me staighten after pain
As a tree straightens after the rain.
Shining and lovely again.

God make me brave for life,
Much braver than this!
As the blown grass lifts let me rise
From sorrow with quiet eyes
Knowing Thy way is wise.

God make me brave-Life brings
Such blinding things.
Help me to keep my sight,
Help me to see aright
That out of the dark-comes light.

-Grace Noll Crowell, Songs for Courage

Until next time, We love you. The Rileys

Saturday, June 08, 2002 at 05:06 PM (CDT)

Hi everyone,

I read this verse today and it helped. Maybe you will find comfort too, I wrote it below. We are all hanging in there with some days being more difficult than others. We are certainly enjoying the nice, warm weather at last! Hope everyone is having a nice summer so far. Until next time, Love, The Rileys

**Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.
Matthew 11:28-30

(I liked this verse because it gives us permission to feel and be weak and that God will be our strength. What a relief.)

Monday, June 03, 2002 at 10:55 AM (CDT)

Our boy has been gone for one month yesterday. Talk to you soon. The Rileys

Tuesday, May 28, 2002 at 10:25 AM (CDT)

Hi,
Hope everyone had a nice holiday weekend. We had a barbacue on Sunday afternoon. I think everyone had fun. The kids were still beat yesterday. Having fun is going to be crucial part of our healing although it is hard afterward. It seems like I crash really hard afterward when the reality of my sorrow comes back. It still hasn't sunk in completely and I am wondering if it ever will. I miss him so so so much. Thanks to our friends who are surrounding us with thier love. We will write again soon, although I don't imagine it is very interesting to read about our lives now and the void of having our precious boy gone. Have a swell week. Love, The Rileys

Sunday, May 19, 2002 at 03:08 PM (CDT)

Hello everyone,
It's been a week since Eion's funeral, but seems like a very long time ago. We have the Strawberry Fest this weekend to keep us busy. John and I were sitting on the front steps this afternoon talking about Eion and I looked down on the ground beside me and found a penny. I turned it over and it said 1997. This is the second 1997 penny we have found this week. Sounds silly, but it gives us comfort. We let the butterflies go last Monday afternoon. Most of them were still alive, a bit ragged around the edges, we shall see if they lay some eggs so we will have more. I fear it has been much too cold for them though. Everyone here seems to be doing okay. We are all just trying to get through each day. We all miss Eion very much. I am also working on a memorial web page for Eion. When I get it done I will let you all know what it is. I have also left our good friend Lexi's web page address below. She is still in treatment for Wilms Tumor and is doing well for now, but as you know, a parent can never really feel safe until treatment is over and thier child is clean for a while. Give them support if you can. Bye for now. All our Love, Angela and the Gang

Sunday, May 12, 2002 at 07:30 PM (CDT)

Hello,
Thank you for your sympathies. I can only speak for myself now, but I have to admit that none of this seems real to me yet. Maybe there is a part of me that doesn't ever want it to. I feel a deep sadness in my chest and am sick to my stomach all of the time. Intellectually I can tell you what has happened in the last few weeks, but I still don't believe it. I feel like I am walking in a literal fog, everyone and everthing around me looks blurred. I have been trying to remember Eion and I can't even picture him in my imagination. I think that was my biggest fear and hope it is only a temporary shut down of emotion. I have been reading about other parents experiences and realize it may take months for this to sink into reality. I worry about the day this hits me between the eyes, but know that that is when the healing really begins. All I know now is that I miss him so, so much as do we all. The services were nice. So much love and compassion for our family. Saturday was a real disappointment with the weather so horrible. The butterflies are still in thier box waiting to fly free, maybe tommarrow it will stop raining so I can let them go if they are still alive. I hope I don't have to feel the guilt of the death of 50 stinking butterflies on top of everything else! Just another reminder that nothing is ever really in our control. Happy Mothers Day to all of the mothers out there. Thanks for the ear... Angela

Friday, May 03, 2002 at 04:50 PM (CDT)

****WEDNESDAY MAY 8th SEVICE UPDATE***
There will be parking reserved for Eion's service across the street from the church at the 1st Baptist church lot and the Village parking lot by the library. Our church is small so we respectfully request that seating for family and friends be taken into consideration first. Thank you for the wonderful messages. We love you all, The Rileys




Visitation for Eion will be on Friday May 10th from 2-9pm at Overman-Jones Funeral home in Plainfield. Services will be at 11:00, Saturday, May 11th at Plymouth Congregational Church, 409 Lockport St. in Plainfield. We have alot of family coming from out of town and finals week next week so waiting for next weekend is what works best all around. Memorals to Wish Upon A Star in Joliet or The Pediatric Brain Tumor Foundation are appreciated ( links below). This is really tough right now as you all might imagine. We thank you for your support and will see you all next week. Love, The Rileys

Thursday, May 02, 2002 at 07:57 PM (CDT)

At 7:22 this evening, our beautiful angel Eion went to be a beautiful angel in heaven. He passed very peaceful and looks beautiful even in death. We were worried that he wouldn't look like himself after he passed, but he looks so peaceful. We are going to miss him. We will write soon with all of the details of his funeral services. Thank you for your love for our son. The Rileys

Thursday, May 02, 2002 at 01:16 PM (CDT)

Hello, everyone. Just a quick update.Eion has turned another corner; at about 3:00 this morning he woke us up with some very intense convulsions/seizures which lasted a little more than an hour, during which he mercifully slipped into a coma. His breathing has become somewhat labored with that "rattle" which usually signals that the end is approaching. Our hospice nurse said that he could go on several hours or several days, but we are keeping him medicated so that he will be as comfortable as we can. He didn't have a great day yesterday, & by the time he went to bed he wasn't really able to drink anything out of his everpresent sippy cup & his voice was very weak & hoarse. Thanks to everyone who has been calling & stopping by to visit Eion & help console us; thanks to you, days which seem to never end are made a great deal more tolerable. This has been an extremely difficult time, the likes of which I don't recommend to anyone, but your concern, love, & continued support has made us feel like we are not alone here. Thank you for holding our hands through this. We will keep you updated as things unfold, or we just need to vent a little. Thanks again for everything. Stay tuned.

Wednesday, May 01, 2002 at 09:40 AM (CDT)

Okay everybody calm down. A dear friend Lisa from Nebraska called last night . She has been a hospice nurse for 5 years and set us straight on how to manage his pain better. We didn't realize how much more we could give. We do now and we will be sure to keep him pain free. Maybe we just didn't ask the right questions of our nurse, but now understand more clearly how we can help him better. Thank you Lisa. Otherwise things are going the same. I put a different photo and a picture Eion made in the hospital in photos. The picture is so precious to me because after we made the picture, I jokingly said, " Okay now write your name Eion", and he did! I didn't tell him how to spell it or write it, he knew and I was so impressed and proud! It is also so perfect that the picture is butterflies. We are going to frame it and keep it close forever. Thank you again for being out there for us. We'll write soon. Love, The Rileys

Tuesday, April 30, 2002 at 01:51 PM (CDT)

Hello,
How are we doing? Well, we've decided that life really stinks. Isn't it bad enough that we have to let our boy go, but now we have to watch him suffer too? He is very uncomfortable. We keep him pumped full of pain killers, but his body hurts all over. He has been through so much and now he must be wondering why we aren't helping him. And yes we know intellectually that we are doing everything we can for him, but instinctually as parents, it goes against everything a parent should be doing for their child. We are trying to cherish every moment, but do I want to cherish the moments when he is crying out in pain and has already had morphine? We cherish every moment we have had with our precious Eion when he was running and playing with that special coy smile. The sun shining in his beautiful sparkley blue eyes. When we are going to sleep at night and he is softly stroking our hair like he has done his whole life and he whispers back "I love you so much too." Watching a body die is something we don't want to remember and to ever feel this agonizing pain in our hearts again. Thank you for helping Eion and us through this. If it wasn't for all of you, we would surely have gone mad from sorrow by now. We will write again soon. Love, The Rileys

Sunday, April 28, 2002 at 08:46 AM (CDT)

Hello,
Eion has been doing much better in the last few days. The hospice nurse and social worker were here yesterday and took his vitals. His heart rate is down and he is much more relaxed. The nurse said this is very common. He is so relieved to be home. It is very interesting that his cat Rufie is by him almost constantly. He has always known Eion is his master. The nurse said that is also very common, animals sense what is happening. The kids seem to be handling everything well. Gabe and Ellie spoke to social workers at school and they said it was helpful. We can't thank the schools enough for supporting Gabe and Ellie like they did. As for John and I, we are hanging in there. I keep thinking it will get a little better each day, but actually it is more painful each day. I can't even look at him without feeling like my heart will explode. Some people have said they want to call or stop by but don't want to impose. It isn't an imposition if you feel you would like to come by or call, then do. Having friends and family around us has helped, but don't look at the mess. We will write of Eions condition again soon. Thanks for your support. Love, The Rileys

Friday, April 26, 2002 at 09:05 AM (CDT)

I woke up this morning, looked at Eion's beautiful face, and for a few seconds I forgot that we are going to loose him. He has declined rapidly in the last few days. He is now blind, can't sit up and has involuntary movements in his arms and legs. His heart rate was up to 160-200 bpm at the hospital with irregular respiration. He is still coherent and has been drinking milk and had a red popcicle. He doesn't complain of much pain, but we have morphine to make him comfortable. Also, his shunt isn't working because it is clogged. We don't know how much longer he has, but we do know that he is definately happy to be home. We have talked to Overman-Jones funeral home and will have the visitation there w/ services at Plymouth Congrational Church. This is the most horrifying, painful thing we have ever experienced. Your support, as always, has helped ease our pain. Thank you. Love, The Rileys

Thursday, April 25, 2002 at 01:30 PM (CDT)

Dear friends and family,
Eion will be coming home today, but it is so that he may leave this world in his own home and with all the people who love him. We are going to try to make him as comfortable as we can. Hospice will be called to help us take the best care of him as we can. We will let you know how he is doing as we can. Thank you for everything. Pray that Eion is in as little pain as possible. We love you all. The Rileys

Tuesday, April 23, 2002 at 09:42 AM (CDT)

*WEDNESDAY APRIL, 24TH***
HI, eION IS NOT HOME YET AND WE AREN'T SURE WHEN HE WILL BE READY ENOUGH. HIS LITTLE BODY IS SO TIRED, I THINK IT IS JUST GOING TO TAKE HIM LONGER THAN WE'RE USED TO. PLUS HIS GOOD EYE IS ALMOST SWOLLEN SHUT AND HE ISN'T PEEING YET. WE'LL LET YOU KNOW WHAT'S UP SOON. LOVE, ANGELA



Good Morning,
Eion is sleeping, so I thought I would update everyone. He had the shunt put in last night. He didn't go in until 7:00pm and was back in the room by 10:30pm. I don't think it was any too soon. The spinal drain was causing alot of discomfort for him. He hasn't eaten in 5 days and his legs were hurting so bad we had to rub them most of the time. The spinal drain also wasn't working very well and too much fluid was building up in his brain again. We are very relieved to get past all of that and now they say we could go home as soon as TODAY! I'm trying not to get too excited about coming home today, but feel that tommarrow is more likely. He seems to be feeling a little better but he has a few new wounds to heal. I am praying that he wakes up this morning much better. Thank you to the great visiters last week. One of Eion's fans Dahne from Arizona stopped in and Reverend Perry who read about Eion in the paper stopped in to pray with us. We have also gotten inspirational cards and messages from many people who are truely special for caring about Eion. Thank you all! We will let you know more as we do and hope to be updating with Eion from home next time. Love always, The Rileys

Friday, April 19, 2002 at 12:27 PM (CDT)

Hello,
Eion is doing okay. He hasn't eaten much lately. We aren't sure if it is the new spinal drain or that he is really sick of the food here or maybe a little depressed. He was weighed yesterday and hasn't lost much weight so we aren't too worried yet. His results from the spinal tap showed that there are some cancer cells in the fluid and the spinal MRI showed a couple of questionable areas. He will have the permanent shunt put in Monday and hopefully he will be coming home Wed or Thurs. We also will be starting him on Thalidamide (angiogenisis inhibitor) and oral VP16 next week. The treatment will be done at home with blood counts weekly. We are looking forward to Nana and Papa coming from Nebraska today for the weekend and the exciting news for the day is that Ellie has made the traveling pom pom squad for the football team next year! We are very excited for her. We will update again soon. Until then, thank you for your loving support and prayers for our Eion. The Rileys

Monday, April 15, 2002 at 03:44 PM (CDT)

Hello,
Sorry we haven't really given much detail to what has been happening in the last few days. I think we are having a hard time trying to get it all straight. We don't know when Eion will be home. He has Fungal Menigitis which is very uncommon and difficult to treat. The good news is that the yeast is already starting to clear up, but he will be on the anti-fungal meds for 6 more weeks. Some doctors are saying they don't want to put in the shunt until then and others say we can earlier. It looks like he will be in for at least another week, one Doctor said 4 weeks, but we don't think that will happen. Eion had another surgery this morning to put a drain in his spine in hopes of removing the one from his head to more quickly clear up the fungus. We won't know if it will work for a day or two. Then we have the MRI results. We were told that there is a new tumor in the third nerve at the top of his brain which has caused the damage to the eye. We were also told that they think there is another new tumor on the other side of the brain. The problem with the MRI is that collections of yeast show up as well and I think we are praying that it really isn't tumor but maybe yeast? Are we grasping at straws? Maybe, I guess we shall see. I guess we have to accept that he has lost his eye. We mourn every beautiful part of his little body that we will never see working again. He came into this world perfect and it is hard to accept his losses. We know the most important part is that he is still with us and is still Eion. We will let you all know of further details as soon as possible. Thank you for your prayers and love for Eion. The Rileys

P.S. We have the web link to the Sun Times article below if you missed it. No pictures though.

Friday, April 12, 2002 at 11:43 PM (CDT)

****Saturday April 13***I just got home and saw the Sun Times article. They did a really nice job. Also, Grandma Sue added some new pictures. Eion is doing well.We'll update soon. Love, Angela



Hello all! Just a quick update, as there isn't much new to report. Angela has been with Eion the last couple of days & she reports that he seems to be doing ok (allowing for the fact that he is still in the hospital) in that he is eating good, has been playing games with Angela, doing puzzles, & is interested in going to their very nice playroom which is an improvement in his attitude since earlier this week. We are still dealing with his yeast infection & cfs fluid problems, so we don't know when he will be able to come home. However that doesn't mean that he will not be out in the world, as the Sun Times will be featuring him & the Gliasite procedure & the University of Chicago in their Sunday edition. I suspect that, based on everyones interest & concern for Eion, this should be an exceptional day for the Sun Times. Sorry, no autographs from him will be forthcoming at this time. Also, look for an update in the Enterprise soon. In the meantime, please keep that special boy in your thoughts & prayers; he has patiently persevered through all of his past crises & is doing his best to get through this one. Thank you, as always, for your concerns & prayers, & for taking a minute out of your busy lives to check up on Eion. As he has been in your prayers, so you will be in ours (because we all need them every now & then, right?). 'Bye for now.

Tuesday, April 09, 2002 at 08:58 PM (CDT)

Hello everyone,
Eion has had a big day and is doing well. He had the radiation removed this morning at 7:30am with no discomfort (Thank God). Then we waited for our turn for surgery. He ended up going into surgery at 2:10 this afternoon and was done by 4:00. He did well and was recooperating when I left at 6:00. I think he was a bit angry with us for putting him through another surgery, but handled it all like the exceptional little guy that he is. We aren't sure when he will be coming home, maybe a week or so. We are told that yeast infections are difficult to get rid of. We may not be able to put in the permanent shunt until we get rid of the infection and aren't sure yet if we even will need a shunt yet. There seem to be many variables right now so we are just trying to embrace one day at a time. (How cliche')I think the next area of concern is the MRI. We aren't sure when we will have it, scheduling is ALLWAYS a pain, but will let you all know. The news coverage was a nice temporary diversion, and thank you for all of the great comments. We hope it will help others, but now it is time to get back to the business of getting Eion well. We depend on your prayers and support to carry us on to each difficult day, so keep it up. Many people ask what they can do for us and honestly you all are doing more for us than you will ever realize. You ARE "The wind beneath our wings" Ha Ha...now I'm getting corny, too much nasty hospital food. Seriously thank you very much. All our love until next time... Angela

Tuesday, April 09, 2002 at 08:58 PM (CDT)

Hello everyone,
Eion has had a big day and is doing well. He had the radiation removed this morning at 7:30am with no discomfort (Thank God). Then we waited for our turn for surgery. He ended up going into surgery at 2:10 this afternoon and was done by 4:00. He did well and was recooperating when I left at 6:00. I think he was a bit angry with us for putting him through another surgery, but handled it all like the exceptional little guy that he is. We aren't sure when he will be coming home, maybe a week or so. We are told that yeast infections are difficult to get rid of. We may not be able to put in the permanent shunt until we get rid of the infection and aren't sure yet if we even will need a shunt yet. There seem to be many variables right now so we are just trying to embrace one day at a time. (How cliche')I think the next area of concern is the MRI. We aren't sure when we will have it, scheduling is ALLWAYS a pain, but will let you all know. The news coverage was a nice temporary diversion, and thank you for all of the great comments. We hope it will help others, but now it is time to get back to the business of getting Eion well. We depend on your prayers and support to carry us on to each difficult day, so keep it up. Many people ask what they can do for us and honestly you all are doing more for us than you will ever realize. You ARE "The wind beneath our wings" Ha Ha...now I'm getting corny, too much nasty hospital food. Seriously thank you very much. All our love until next time... Angela

Monday, April 08, 2002 at 11:04 PM (CDT)

Hello, everyone. Well, we have had a bit of a setback in our hopes to be home Tues.; because of the extended use of Vencomycin to prevent an infection in Eion's cyst area, he has developed a fungal yeast infection there. That means that after the radiation is removed from his ballon, they have to remove the appliances & treat this new problem, so he will probably have to be in another week or so (at least we will be able to cuddle with him again, & boy is he ever a good cuddler, but we'll have to do it in a hospital bed). Also, the mri has been postponed until Wed. In the "Give the world the news" dept., he & this Gliasite procedure will be spotlighted in the Sun Times sometime this week. The reporter is looking into Sundays edition, but it may run sooner. The media machine continues to roll. Angela has been with him & reports that he is holding his own, his appetite remaining pretty much normal; don't worry, his cheeks will still be very cherubic & cute. Not much more to report. We are hoping that things will start to run a bit smoother in the days ahead. Thank you all, again, for all of your thoughts, prayers, encouragement, & concern. It really helps & is much appreciated from his friends old & new.'Bye for now.

Friday, April 05, 2002 at 04:09 PM (CST)

Hey, everyone, we have a "radiation reprieve & one of us can come home! They took readings with Angelas new favorite instrument, the Geiger counter, & found that the perimeter area around Eion's bed was safe enough for 1 of us to remain in the room all day. The only restriction is at bedside where we can be for 1 cumulative hour each day. When I last talked to Angela, she said that Eion was a little quiet to start the day, but after a couple of naps he had come around to Eion. We have been weening him from his Dekadron & today he has been eating more normally (too bad for McDonalds), & Angela said that his fluid has been decreasing, so we are happy about that. Our big concern now is his right eye; his eyelid has closed & the eye is off center & as of today not responsive to light. This could be caused by several things, the worst being tumor, but we will see Tuesday when we have an MRI done after the radiation is removed from the ballon. Kudos to Angela & her composure & eloquence while being interviewed by the media. She has such a perfect way of expressing a thought that would take me an entire newscast to struggle to express. The whole TV experience was very amusing, & of course Mr. Eion was his little charming self. Everybody just loves that boy! Thanks to Grandma Sue for the updates while we were away & for Aunt Mary for coming from Phoenix to nanny everyone at home. Also thanks to everybody for your continued concern, prayers, & encouragement as we once again are in a difficult phase of this saga. Angela will be home Sat. & I get to get back to that boy. Thanks again & please keep Eion in your thoughts & prayers.'Bye for now.

Thursday, April 04, 2002 at 05:16 PM (CST)

Eion has had the radiation injected into his balloon and everything is going well. He said it hurt when they sucked out the saline solution but got better as soon as the radiated iodine started going in.

I talked to Angie by phone at 4:00 today and she said Eion was fine and eating ice cream !

I just watched a very impressive interview on Channel 7's Healthwatch where they interviewed Angie and showed movies of the procedure being done. They all looked so wonderful. Angie said that in addition to the interview that was done by Channel 7, that Channel 9 WGN (broadcasted on cable in many parts of the USA) as well as FOX 32 did interviews and will be shown on tonight's (Thursday) 9:00 P.M. news. See if you can get one of these in your area. As I said before, I hope that this publicity also helps another family find help for a suffering child. I'll update for Angie and John as I get more info. Love, Grandma Sue

Thursday April 04, 2002 at 12:43 AM (CST)

***** Hi, Angie, John and Eion are checked into their room at Univ of Chicago hospital. They been visited by Channel 7 news (it will air today on 4:00 PM Healthwatch and ALSO have been interviewed by FOX 32 who will air this segment on the 9:00 PM news tonight. We sincerely hope that this publicity will help direct another child's family to a cure for this terrible brain cancer. The radiation will be injected this afternoon through the catheter opening to the balloon in Eions brain. They do the procdure right in the room. He is resting comforatbly now.


***Hi another quick update. We got a call from the hospital publisist and Channel 7 is coming tommarrow to talk to us about Eion's treatment. He thought it would be aired on the 4:00 news during the Healthbeat segment. We are excited, watch for us!!Bye for now.

Hello,
The meeting yesterday went well. We met with the people who will be working with Eion during the proceedure. They were very nice and seemed like they were thinking about how best to make Eion comfortable during his isolation. They admitted that they are going to be overly cautious with us because he is the first to have this treatment at their hospital. We will use a gauge to see how much radiation he is actually omitting and perhaps adjust the time we each are allowed to spend with him acordingly. It could be more or less the suggested 8 hours cumulative time. They were very concerned with how he was going to handle isolation, but we explained that it is old hat for us and that Eion is not a typical 4 year old so they left the meeting feeling much less apprehensive. We will be admitted tommarrow morning at 10:00am and hopefully put in the radiation in the afternoon. As far as Eion's condition goes, his eye is drooping even more, but his spirits seem to be inproving. We have been tapering down the steriods and he doesn't seem as iritable although he is still eating unbelievable amounts of food! He is at about 43 pounds and rising! My friend's son saw him yesterday and asked who he was! I'm sure after we're done with the steriods it will work itself back to a normal balance. We will try to update from the hospital as we can and thank you for your support and prayers. Love to you all, The Rileys

Friday, March 29, 2002 at 06:44 PM (CST)

Sunday March 31, 2002, Hi, We added some new pictures from Easter Sunday. Will add more as we can.


Hi,
We have the final details for next weeks treatment. They have changed the day from Monday to Thursday. They are having trouble getting everything organized. They have to have specially trained Ped. nurses for us, reserve a special lead room and have the radiation made and shipped from St Louis the day of treatment. I was very disappointed when they moved it to Thursday. Eion is having some odd things happening to him. His right eye is drooping very bad. It is half way shut like he had a stroke or something. The Dr isn't sure why this is happening. It is adding to our anxiety about Eion's current condition, plus we are driving to Chicago daily to drain 100ml of fluid from his brain. We want them to get the lead out SOON. I'm worried that by the time we have treatment, he will have irreversible damage from waiting so long. It has been a frustrating and frightning week and next week is going to seem like an eternity! Tuesday we go in to meet with the "team" of people who will be working with Eion. They are going to educate us on the procedures involved in being around a radioactive 4 year old I guess. They want us to know the risks to us and precautions we have to take for our safety. We will let you all know how the weekend went and how next week goes. Have a wonderful Easter everyone. Love to all, The Rileys

Tuesday, March 26, 2002 at 07:57 PM (CST)

Hello to you,
As usual, much to report. We went into the ER on Saturday. Eion's pupil was dialated again and he wasn't acting normal. They did a CT scan and everything appeared ok. It turns out that his brain is still producing too much fluid. They have drained his brain and couldn't keep up with the fluid, so they put a needle in connected to an exterior bag to do a continuous drain. If the fluid accumulation doesn't equal itself out after the GliaSite procedure is done next week, he will have to have a perminant shunt put in. Hopefully he will be coming home tommarrow for a few days. He is scheduled to have the radiation treatment done next Monday. He will be in isolation for the procedure for approximately 5 days. On a very positive note, Dr Mundt (radiation oncologist) was very pleased with how well the brain has formed around the balloon. Better than he thought it would. Eion once again surprises the pros! That's our boy! We will have to go in every other day for the rest of the week to have the fluid drained. A small inconvenience to have him home for the rest of the week. Thank you so much for all of the great messages! We gain much of our strength from you, "Eion's devoted fanclub". We will let you know of anything new as we do. Love to you all, The Rileys

Wednesday, March 20, 2002 at 05:40 PM (CST)

Hello,
Not much to report. We have a meeting with the radiation oncologist next Tuesday to find out when they are going to use the radiation. Eion is doing better, a little uncomfortable still. As always, we will let you know what is going on as we know. Thanks for your love and prayers. Angela

Friday, March 15, 2002 at 07:46 PM (CST)

*******Saturday night March 16, 2002****
Hi, I came home for the night. Eion is doing great!!! He will probably come home Sunday. The CT scan showed today that the balloon is adhering to the tumor bed walls nicely, and so soon.Great News!! I have yet to meet with the radiation oncologist to discuss the next step, probably Monday? We will let you know as we do. In the mean time, thank God he is doing so well! What a special boy! We have new pictures, thanks to Grandma Sue, so check out the kitty and pictures from today. He looks GREAT!!! Love you all and thank you so much for the love and prayers!!!!! Angela


Hello Everyone ! This is Eion's Grandma Sue updating Eion's page. Surgery is over and Eions is doing very well. He was on his second popsicle as Grandpa was leaving! The surgery didn't start until about 4:00 PM today and he was back in his room by 7:00 PM. The Dr. team had decided on Thursday that they would not resect the tumor. They did not feel that they could get it all and then were afraid they would chance injuring his brain functions. So the decision was made to insert the Gliasite balloon into the tumor bed and at the same time insert an additional collector vehicle to use for drainage of fluid buildup.
Angie said that the Dr. was pleased that the balloon fit in as nicely as it did - better than they had hoped. They are going to let it sit for a couple of days to give the brain a chance to settle around it. Probably next week, the liquid radiation will be injected and it can go to work on the tumor! We all thank God for giving Eion this additional chance for healing and also for giving him the physical strength to endure these procedures. John and Angie will stay with him while he is at the hospital (University of Chicago Hospital- childrens wing) - He is in an "intensive care type unit" and no phone in the room so just send your greetings and good wishes via this wonderful Web Site! Til next time, Love, Grandma Sue

Monday, March 11, 2002 at 06:04 PM (CST)

Hello,
It's never dull with the Rileys!!We spent the weekend in the hospital for two different reasons. One was serious and one was urgent, but not serious. Sat. my Mom, Eion and I went to Jewel for a few things. Eion was sitting in the cart. We were at the cash register and I was helping him stand up when he said "Mom, my tubey." I looked down and the bottom half of his newly repaired port tube was laying on the floor! A half of a second later, I saw the blood gushing out of his line. My mom ran and got some barrettes to clamp it. Needless to say the entire store stopped and watched in horror at what was happening. We tried calling area hospitals, but they couldn't repair his line so off we went to Chicago at about 5:00 and got home by 9:00pm. Everything was fine. Then Saturday! It started fine and we were all getting ready to go to a movie. At 11:00, Eion starting vomiting and said his head hurt really bad. We paged Dr Grant and he said to come to ER. We had a CT scan done and it showed that he has Hydrosephalis (sp), swelling of the brain and the center line was pushed over 8mm. He was admitted to neurology accute care and put on Dexadron (steriods)to reduce the swelling. He was stable over night. Dr Grant released him from the hospital so we could go to our appointment today. SOOOO...we met with Dr McDonald today and basically he said he wouldn't do the surgery because the tumor bed is too large for the procedure, but, would talk to Dr Yamimi, another surgeon, to see if he would be interested. We drove home deflated. When we got home, I called the product rep for GliaSite to ask her more questions and while I was on the phone with her, Dr Yamimi's nurse called to schedule Eion's surgery for this coming Friday! We will go to clinic Thurs., then get admitted Thurs night with tentitive surgery on Friday. The Dr is meeting with the GliaSite representative on Wednesday. So for now, we are just trying to keep the swelling and fluid in Eion's brain from becoming a problem, if it does, we will go to the U of I emergency room for a temporary shunt until surgery. I think that's it. We'll let you know any new news. Pray for Eion! Love, The Rileys

Friday, March 08, 2002 at 03:46 PM (CST)

Hello everyone,

Well here is the latest. We think we may have found something new and promising. Last night I read about it on the internet and then a dear friend, Nola, saw a story about it on CNN TODAY!! Talk about a sign from God. It is called Gliasite radiation. The surgeon does the resection, then inserts a balloon into the tumor bed area. After surgery, liquid radiation in put in the balloon. The radiation kills cancer cells and leaves good brain tissue alone. We found a doctor at University of Chicago who can perform the procedure and have a meeting with him at 3:30 on Monday. Wish us luck, it has worked well for another little boy simular to Eion, but to our knowlege he is the only child they have used it on so far. Dr McDonald's nurse said he is very interested in using it in children but hasn't had a candidate yet. We think Eion is the one he's been waiting for. We will let you all know how it goes. Bye for know, Angela


****If ANYONE has any ideas, suggestions, ANYTHING, that can help us find treatment for EION, please let us know! Thanks.*****

Wednesday , March 6, 2002 at 03:15 PM (CST)

Hello,

Well, we are home. Eion didn't have surgery today. He had an MRI this morning at 7:00am to use with the Steath during surgery. At around 11:00, Dr Tomita informed us that acording to the MRI the tumor had grown another 1cm and had spread. He said Eion is no longer eligible for the INTRABEAM. We now have some very hard decisions to make soon. All we can say is that it isn't good. This has been a devastating day, and we will let you all know what will happen next when we figure it out. Please pray that God will guide us to make the right decision for Eion. Angela

***Check out new photos***

Tuesday, February 26, 2002 at 10:22 AM (CST)

Hello everyone,
Well yesterday was yet another "exciting" day at Childrens Memorial. Eion got a pin hole in his port tube, so a surgeon had to come and fix it. The spinal tap went okay. Eion is the bravest boy I've ever known! His spinal tap was clear. Then Dr Goldman informed me that we had an appointment with Dr Tomita (the surgeon). They forgot to call and tell us that. So John didn't get to come for that. Anyway, we are scheduled for surgery on March 12th or 13th. They discussed the Intrabeam process and risks involved. This is also a study, which we didn't realize. More waivers to sign, but it is kind of scary yet exciting that it is so new. Only about 5 other children have had he procedure down. A huge team of nuclear scientists etc. will be called in for his surgery from other hospitals. We pray this will work. Like I said before, 6 weeks after surgery we will begin a Phase I chemotherapy. Phase one means they don't have much data on it and are still trying to set the doses for maximum effect. In essence Eion is somewhat of a guinea pig in all of the treatments to come. We hope he will be one of the first children to reap the benefits of a new drug or procedure that will be the cure for cancer. Until then we pretty much have 2 weeks of freedom. Eion's counts are good and he feels good, so we are going to have as much fun as we can in the next two weeks. We will post with more details as we get them. Again, we can't thank you all enough for the support and prayers. It really does give us the strength and comfort that all is going to be okay no matter the outcome. Until next time, God Bless, Love The Rileys

Thursday February 21, 2002 3:54 PM CST

Hello everyone,

We just talked to Dr Goldman about the next plan for Eion's treatment. We are less than excited to here the new plan. Eion will be having a spinal tap on Monday morning to make sure the cells haven't spread into the spinal fluid,(they haven't so far), as long as that is clear then he will be having another brain surgery in 2 weeks. They are going to scrape out the new tumor and use the INTRABEAM radiation treatment during surgery.It kills cells directly up to 1 cm into the tissue. It is a really new treatment, only in use for a few months at Childrens, but a promising one. 6 weeks after surgery we will start another chemotherapy treatment. It will be another "promising" drug that is new and still in the experimental stages. Just think, if it works, Eion will be in the research manuals. I know some day they will find a cure for brain tumors and it would be great if Eion could one of the first to have it save his life. That's all we know for now. If anything else comes up, we will let everyone know. Thanks again for your love and prayers, they mean the world to us. Love to all, The Rileys

Wednesday February 20, 2002 10:08 AM CST

Hello everyone,
Just a quick message to let everyone know what is going on. Eion will not be having treatment this week. His platelets went down to 14 so we had to transfuse yesterday. He is going to have the MRI this afternoon. It will be the brain and spine. Dr Goldman said he would let us know the results by 5:00 tonight. I will add it to the bottom of this message so scroll down tonight. Other than that everything is going okay. We have alot of meds to give right now so I think John, Eion and I are really get worn out on that!! One less on Sat. ( John's birthday!)Until tonight...Love, The Rileys

****************
Hi again,

The MRI was very late today. He was supposed to start at 1:30 but started at 4:30. You have to remember he couldn't have anything to eat after 7:30 or drink after 11:30 this morning. Anyway, we do have preliminary results. Eion's tumor is growing back. It isn't a mass yet, but the questionable area (line) is broader, so Dr Goldman is sure it is growing back. The Tumor Board meets tommarrow and they will discuss the next plan of action and let us know tommarow afternoon. He said this doesn't neccessarily mean the stem-cell transplant is off, but we will have to change the chemo "cocktail". Speaking of which, I think I need one. Ha Ha, just kidding. We will let you all know what we find out tommarrow. Thanks for your love and prayers. Angela

Tuesday February 12, 2002 8:34 PM CST

Hello,
Well we got home from an unexpected hospital stay last night. Eion had pinched his finger in the zipper of his coat last week and it didn't seem like any big deal. Well 4 days later it hurt and was purple-black all the way up to his knuckle. Luckily, he needed platelets Friday anyway, so we made sure the doctor took a look at it. That was it, he was admitted. They took blood cultures Friday and it turned out to be two blood infections. Strep and Staff. He is on Vancomiacin every 8 hrs for the next 12 days. Its a good thing we caught it when we did. It could have been very serious. The bacterias are normal baterias everyone has on their skin, but with the very low immunities it caused the problem. Other than that, all it well. He is feeling good and looks great! We won't be ready for treatment this week, but I think he will be ready next week. And we have the MRI coming up again already. Time sure does fly. We will let everyone know of the date. Thanks for all of your love and prayers. Love, The Rileys

Tuesday February 5, 2002 11:15 AM CST

Hello to all,
Hope you all saw the MRI results from last week. I forgot to mention the vision test. Eion's vision is fine, praise God. We will recheck in a year, but as of now, its fine. Eion seems to be handling this chemo treatment fairly well. He was sick for a few days after, but seems fine now. He isn't eating really well, but he is still on TPN (IV nutrition)so he is still gaining weight. He is up to 37.5 lbs! He out weighs Quin by a whole pound. Hopefully the extra weight will help him recover from chemo. So far so good. Last Friday he did go in for Blood and Platelets. Monday, his labs were done and his blood was fine, but platelets were borderline. We will redraw Thursday, and are expecting to have to transfuse on Friday. We shall see. Other than that all is going well, no fever, which is a blessing! We will write again soon. Love to all of you, The Rileys

Thursday January 24, 2002 9:23 PM CST

**MRI results added to this message-scroll down***

Hello to all,
Sorry I haven't let you all know whats going on this week. We started treatment Wed and will be done tommarow (Fri). We are doing it outpatient which is alot of driving but worth it to sleep in our own bed at night. The hospital is the worst place to get any rest! Eion started vomiting this morning 5am, 7am and 10am. We brought some Zofran home with us today so we will give it before bed and tommarrow morning to see if it helps. Otherwise he is doing very well. He is in great spirits and feeling strong still. We will have the MRI tommarow at 12:00. We are going to try it without sedation. I think he can do it but we shall see. I don't know if we will be told of any results tommarow and I am praying they won't make us wait until MONDAY! I will be distracted all weekend. Eion also got a new kitten. He has been pestering us for a "New Baby Dog" for a few months, but finally agreed to a kitten. He named him Rufie and he is a great kitten. We will try to post pictures soon. Until I get more news, bye for now and thank you for your support and prayers. Love, The Rileys

********NEW INFORMATION***********

Hello, I am excited to report that Eion did the MRI without sedation. 40 minutes of laying perfectly still! Everyone looked at me like I was crazy for trying, but I explained to them that they don't know Eion. He is a special boy. The MRI results aren't "bad" news, they saw an area that looks nodular in the origination area. It could be tumor regrowth or post surgery scar tissue. The doctor said he "concerned". We will have another MRI in four weeks to check on it. Pray that it isn't tumor. Otherwise things are fine. Eion is still feeling ill, hopefully that will pass soon. Until next time, thanks again for your love and prayers. Love, The Rileys

P.S. We haven't gotten many messages lately, but know your there by the visiter numbers, we would love to hear from you. if you have time, leave us a message.CHECK OUT NEW PHOTOS!!

Thursday January 17, 2002 12:07 AM CST

Hello to all,
Hope everyone is doing well. It's been pretty quiet around here. We had blood work done today and we can finnally stop the nupegen now. He's been on it for 25 days. Normally he should be on it for 4-7 days. I think we may be able to do the next treatment next week (Wed).We will have counts on Monday to confirm. His platelets are still a little low for treatment, but should be okay for next week. We shall see. Nothing has been very predictable so far with this new treatment. We are still doing the TPN, stopping Fri hopefully. He is eating a nice, well balanced diet, so I feel comfortable taking him off now. He has maintained 35.5 lbs now for a week or so. He looks great!! He has chubby cheeks (top and bottom!) and is feeling very energetic. When he feels good, we feel like everything is going to be okay. As soon as we know anything definate, we will let everyone know. TA TA for now. Love, The Rileys

Saturday, January 05, 2002 at 09:31 AM (CST)

Hello to all,
The holidays are over. We have had a rough couple of weeks with Eion. We did end up going to Nebraska to visit even though Eion had nasty mouth sores. Dr said we could take care of him there just as well. He is just starting to eat again after about 10 days of not eating. We starting him on TPN (IV Nutrition) 10 days ago. We hook him up at night for 12 hours. He was down to 29lbs. He now is up to 31 lbs. We won't be happy until he is at least 35 lbs. He is also having alot of trouble recovering from the last chemo. He was supposed to start the next treatment Jan 2nd, but isn't even close. His white count is still only .7 after 3 weeks of nupegen. I don't know how long it is going to take his body to recover. I am hoping it is because they took so many stem cells and that this won't be the case every treatment. He has never had mouth sores that bad before it was horrible trying to treat his mouth when he was in so much pain. Other than that, he is really feeling good this week and his mouth looks clear. We are supposed to have the next MRI when we finally go in for treatment and also we are going to have someone look at his vision. I think he might be having trouble seeing clearly. We will let everyone know how those tests come out. Keep your fingers crossed. I always get to nervous when a MRI is coming up. Take care of yourselves and Happy New Year again. Love to you all, The Rileys

Tuesday, December 25, 2001 at 12:31 AM (CST)

Merry Christmas!
Everyone is asleep here dreaming of waking up tommarrow morning to lots of great presents. They are really blessed this year. Then tommarow afternonn we will go to Grandpa and grandmas house for a special dinner and more gifts! Eion isn't doing really well this week. His white count was still only .2 on Sunday and he has terrible thrush now. His mouth hurts so much he won't eat anything. I had to bribe him today with a present per bite of yogurt he could eat. He has lost more weight this week is noticably miserable. Hopefully he will start to turn around in the next day or two with the new medicine we have started today for his mouth. Plus when his whites start to come up, his body can fight bacteria and fungus. On the up side, he didn't get the fever and I think we are past that now. We are planning a little trip on Thursday back to Nebraska. We have the okay from the doctor and can't wait to see everyone. We havn't seen them in a year, before Eion was sick. Hope you all had a wonderful Christmas and if I don't write before January 1st, Happy New Year!! Take care, Love, The Rileys

Thursday, December 20, 2001 at 10:06 PM (CST)

Hello everyone,
Only 5 more days until Christmas! I hope I can keep Quin and Kellan out of the gifts that long! They have been really snoopy this week. Eion is holding on without the fever. His white count was .3 today and we have to go in for platelets tommarrow. If he makes it one or two more days, we'll be home free until January 2nd. We have had such a wonderful holiday season. We are overwelmed with all of the kindness and love people in our community have shown us. We feel truly honored that Eion has touched them. We have always known what a special boy he is. It brings us much comfort and strength to have so many people behind us in our fight for Eion. As always, thank you so much for your prayers and Happy Holidays. Love, The Rileys

P.S. Make sure to check out cute Santa photos!

Friday, December 14, 2001 at 01:23 PM (CST)

Hello everyone,
We are HOME!! Tuesday's Stem Cell Harvesting went very well. We harvested enough stem cells (4.3 million) for both transplants in one day!!! Everyone said that is very unusual. So Wednesday we just collected extra. Now we won't have to do it two more times as originally thought. Chemo went well on Wed., Thurs., and this morning. He seems to be tolorating it well. We will watch for fever next week, maybe we won't have one. Then are scheduled for the next treatment January 2nd. I can't believe it's 2002 already!! I saw the article in the Enterprize today. What an honor to get front page attention!!! I would like to make one correction though, wishes are not only granted for termanally ill children, its children with life threatening illness. We don't by any means consider Eion terminally ill. He still has a 50% chance of cure with Stem-Cell Transplant. We believe he will survive!!!!!I hope the article helps to raise funds for "Wish Upon A Star", they are special people. Until next time, I hope you are all having a wonderful holiday season.Check out new photos. Thanks for your love and prayers. Love, Angela

P.S. December 14th is Eion's one year anniversary of dx.

Monday, December 10, 2001 at 09:47 PM (CST)

Hello,
Eion's surgery today went very well. He had his Broviac central line put in today. He was supposed to have it done last Friday, but surgery was postponed until today. He was scheduled for 11:30 am, but they didn't get him in until 12:30. He was NPO (no food or drink)since last night, so he was uncomfortable, but not a complain or even a whimper out of this brave little boy. We are so proud of him! We will start Stem-Cell Harvesting tommarrow morning at 9:00am. Hopefully they will get a nice amount of stem cells. Thank you very much to all of the emotional and anonomous financial support this week. Just for your information it was perfect timing. Thank you "Santa". We will let you know how the rest of the week goes. Wednesday we will go inpatient for chemo until Friday. Take care and we hope you are all enjoying your holidays. By the way, Quin and Kellan had a great first day with Jennifer, the new babysitter. We are so greatful for her. Take care... Love, The Rileys

Tuesday, December 04, 2001 at 11:53 AM (CST)

Hello,
We met with Dr Goldman and others yesterday.It is a little overwelming to think about all we are in for in the next year. It is going to start this Friday with surgery. He will have a new port put in. Next Tuesday we will start Stem Cell Harvesting (4-5hrs, Wednesday Stem Cell Harvesting (4-5hrs)then admitted for his 1st Chemo treatment(2-3days). Then we watch for fever (7-10 days after treatment), if/when he gets the fever another 4-? days in isolation, with a few days before he goes back in for Harvesting/Treatment. The Chemo treatment is scheduled for every 3 weeks as long as his counts are okay. It is very overwelming right now but I'm sure we will get into some kind of routine eventually. I am looking for childcare for Quin and Kellan right now and think I have found some excellent people to count on but could always use volunteers for fill-in help. It is really difficult for us to ask for help, but we now realize we have to. Thank you to all of you have offered help and we may take you up on it now more than ever. Please pray for Eion's strength, my heart is absolutely breaking for what we are about to put him through. He trusts us to keep him safe and instead we are forcing him to endure pain and sickness. A four year old could never understand that he is now fighting for his life, all he knows is that he wants to feel good and to play with his brothers and sisters. Thank you all again for your emotional support, it really helps, especially on days like today.Sorry I'm a little emotional. Take care and we'll let you know how Friday goes. Love, Angela

Thursday, November 29, 2001 at 09:44 PM (CST)

Hello everyone,
Another week is gone in a flash. Eion is doing good. We saw Dr Grant on Monday and Santa today at the mall. Dr Grant gave him a clean bill of health and Santa promised more cool Thomas stuff! We won't see Dr Goldman (Neuro-Oncologist) tommarrow as planned it is rescheduled for Monday but we have a general idea of what will happen. Starting next week (thurday?), he will have a new central line put in and will start a high dose chemo drug called Cytoxin. He will have treatment every three weeks(2-3day stay)with the fevers in between (another 3-6 day stay) home in time to go back in for treatment. They want him on that treatment for 4-5 months to see if they can keep the tumor from growing back.If it doesn't, he will have Stem Cell Transplant. It is a horrible treatment but can be the best chance for cure. If it does come back, its another resection surgery, then maybe we can try an experimental treatment. I guess we're looking at another year of treatment. Please continue your prayers not only for Eion's physical body, but his emotional health now more than ever. He seems discouraged with all of the pain and hospitals. We try to remind him of all the wonderful things in life he has to look forward to. He really wants to go to Kindergarten and to leave a tooth for the toothfairy. When we know more we'll let you all know. Bye for now. Love, The Rileys

Saturday, November 24, 2001 at 12:50 PM (CST)

Hello to everyone,
We hope you all had a nice Thanksgiving. Much to our surprise, Thanksgiving turned out better than ever with the arrival of Eion home from the hospital Thursday evening! He is still feeling under the weather or "icky" in his words, but he is eating fairly well and hasn't had a fever. Overall he looks good. He isn't horribly swollen or bruised maybe a little buggy-eyed yet. He is such a trooper, we are so proud of him! We wish we could plump him up more, he is pretty skinny. He is going to need extra fat to get him through the next stage. We will probably have a clearer idea of the next step by next Friday and will be sure to let everyone know. We feel like he has the best chance for cure now more than ever before except now his poor little body has been through so much. Thank you for all of the prayers and support it has made a difference. Until next time...God Bless You. Love, The Rileys

Wednesday, November 21, 2001 at 10:32 AM (CST)

Hello to all,

This has certainly been a rollercoaster ride! Saturday and Sunday Eion definately started looking as if he was feeling the effects of the tumor. We were relieved to bring him in early so he could be monitored. We are so excited with the outcome. 100% resection never seemed like a possibility before. Eion has more of a chance than ever before. We have met with Dr. Goldman (he wants to be refered to as Stew). He touched on some options for Eion's chemo treatment. He wants to wait for the pathology report on the tumor first because tumors can change types especially after recurrance. After he is clear on the type of tumor he is dealing with, he will recommend the best treatment for Eion. We will probably be starting treatment in 10 to 12 days. We feel like angels have led us to this place of new hope and are certain all of the prayers have helped Eion come through yet another "close call" with this monster in his brain. We hope all of you have a wonderful Thanksgiving and truly thank the Lord for the friends and family around you, we know we are. Check out photos, we have pictures from the hospital.Our love always, Angela and John
P.S. Thank you Grandma Sue for updating our website, you did a terrific job!!!

Tuesday, November 20, 2001 at 06:02 PM (CST)

Hello Everyone! Thank you all for the wonderful support and all the prayer lines going. We now know the power of prayer -We have GREAT News on the MRI taken after Monday's surgery. It shows that 100% of the tumor was removed ! The Oncologist is very encouraged that now Chemo will help this terrible disease.

Eion is out of bed and sitting on Angies lap and complaining loudly and are we glad to hear that! She cannot see any evidence of him having lost any functions. I don't have any info on how long they will be there so until then, I will be updating this page. We have so many things to be Thankful for and NOW, this wonderful turn of events gets added to that list.
Love, Grandma Sue

Monday, November 19, 2001 at 11:47 PM (CST)

Know you are all waiting for an update so this is where we are. Eion's surgery was delayed today until 5:00 PM. The neurosurgeon came out at 10:30PM and said that he had removed 98% of the tumor and was very pleased with the results. An MRI in a few hrs will confirm. He was confident that Eion still has all his vital functions but Eion won't be awake for a few hrs yet. We will update as it happens. Love, Eion's Grandma Sue

Monday, November 19, 2001 at 11:35 PM (CST)

Know you are all waiting for an update, so I will tell you what we know so far. Eion's surgery was delayed today until 5:00 PM and the surgeon came out at 10:30 PM saying that he was very pleased with the results. He won't know for sure until an MRI can confirm, but feel that he removed 98% of the tumor. He was also very confident that Eion's vital functions remain intact. Eion won't wake up for a few hours yet, so it will be awhile before Angie and John know how well he did. I'll update as I know. Love, Eion's Grandma Sue

Friday, November 16, 2001 at 06:24 PM (CST)

Hello,
This has certainly been an exciting day. I started calling for opinions this morning and decided to call Childrens Memorial (Thanks to stephanie for the insider #'s)I reached a wonderful woman named Aimee. She organized an appointment with the neorosugeon, but we had to be there before noon and it was 9:00am. We made it to Chicago by 10:45am. We talked with the neurosurgeon for over an hour and he feels very confident he can resect most or all of the tumor! We found out that that hospital has many new treatment for children just like Eion that not many other hospitals are very familiar with. Surgery is scheduled for Monday. Eion will be admitted Sunday evening and is scheduled for the second surgery which should be around 1:00pm. John and I feel like we need to keep trying to save Eion and feel very confident that Childrens Memorial is the right place for him now. Keep him in your prayers. We will try to update his website after surgery Monday. No promises. Thanks for your love and support. Love, The Rileys

P.S. The neurosurgeon,Dr. Grant, is from Ireland. Funny huh.

Thursday, November 15, 2001 at 07:29 PM (CST)

Hello to all,
Eion had the MRI today. We are sorry to inform you all that it wasn't good. Eion's tumor has grown to 9.4cm x 4.6 cm despite the aggressive radiation he received. We are now going to talk with neurosurgeons tommarrow for possible surgery. If they aggree to surgery, it would probably take place Mon or Tues of next week because we don't have much time now. Please keep Eion in your prayers, but don't worry about John and I, we are doing ok. We will let you all know what the next step will be when we know. I'm am truly, truly sorry we don't have better news to share. Thank you for your support. Love, Angela

Tuesday, November 06, 2001 at 09:59 AM (CST)

Hello everyone, We're Back!! We have one word to describe our trip...WOW!!! We were treated like royalty every single day! We went to the Magic Kingdom, Animal Kingdom, Universals Islands of Adventure, Universal Studios and the Melbourne Beach. That is what we did by day, every evening when we arrived back at the Village there was much more to do! The Village was beautiful! We saw many of the characters from Disney and Universal right at the Village! We have a great portrait with Mickey and Minnie. They gave us the negative so that might be Christmas card material. The Village is all volunteer run which is amazing. Everyone there was so kind and loving to our children. We went to the beach on Sunday. It was a pretty nice day but Hurricane Michelle caused the water to be really choppy. Although that enabled us to watch surfers. All in All everyone had the time of their lives, no one wanted to come home yet. We will get the film developed today and will post A.S.A.P. I wll try to download some of the pictures the park photographers took, but they might be too big for the memory on our computer. Check in photos to see if it worked otherwise watch for the other photos in the next day or two. Until next time...our love always. The Rileys

Monday, October 29, 2001 at 09:01 PM (CST)

Hello and goodbye!!
Well it's the night before our BIG trip!!! I think we are as prepared as possible. I'm sure we've forgotten something, but hey, we won't miss it. The kids are so excited! Surprisingly they all went to bed fairly easy.(Thats a first) We will make sure to update this site as soon as we come home or if we have access to a computer, while we are still in Florida. Hope you all have a spooky good time on Halloween. We will update again soon. Bye for now. Love the Rileys

Wednesday, October 17, 2001 at 09:12 AM (CDT)

Hello to everyone,
We have been waiting a long time to tell the kids and everyone about a very exiting trip. "Wish Upon A Star" out of Joliet granted Eion his wish. Last night they surprised the kids with the news! We will be going to Disney World Oct. 30-Nov. 5th! An all expense paid trip with all kinds of special surprises for us!! A limo is even going to take us to the airport!!! This is going to be the trip of a lifetime. It was such a pleasure to meet the board members and friends of"Wish Upon A Star", they are a wonderful, just regular people doing a really great thing for sick kids.
This will be great diversion from thinking about the MRI on the 7th. Otherwise Eion is doing well. He had a doctors appointment yesterday and checked out fine. His weight was a little lower than I was hoping, but not too bad. As always, thank you for your guestbook entries and prayers, they mean alot to us. Until next time, The Rileys

Wednesday, October 03, 2001 at 09:09 AM (CDT)

Hello Friends,
Well we are finished with radiation. We are going to have so much time on our hands now. We won't know what course of action to take for at least a month or two. The MRI is scheduled for November 7th. The port is going to be surgically removed tommarrow morning. Eion is feeling great. His energy levels are pretty good and we expect him to feel back to normal soon. We've had some really fun things to do this summer and look forward to some more really exciting events coming up soon. You will just have to stay tuned to find out what they are! Thank you to all of our friends and family who spent Harvest Fest weekend with us, it was a great time! Nana and Aunt Debbie made it extra special with their visit from Nebraska. Wish they were closer. Please keep Eion in your prayers while we get through our agonizing wait to find out if the radiation has done its job. Don't forget your messages are very much appreciated and sometimes even get us through a really hard emotional day. Take care...until next time. Love, The Rileys

Monday, September 24, 2001 at 09:41 AM (CDT)

Hello to all,
It's Monday. Only a week and a half left of radiation. Then we just wait and see what happens. We had a busy weekend. Saturday was the big birthday party at Oddesey Fun World. It was a crazy good time. I think everyone had a great time. Grandpa and Grandma are still recooperating! Now we are looking forward to next Saturdays Harvest Fest party. Everyone stop by and say Hello! It looks like the weather will hold out for us. Eion is doing well. His culture came back positive last week so he started on antibiotics again Monday. The culture from last Friday was negative so it looks like we'll keep the port for another week and a half then it will come out. I think Eion is feling better since we have stopped spinal radiation. His appetite seems to be getting better, so we are focused on fattening him up some. Hope everyone has a great week and we'll see you all on Saturday the 29th! Love Angela

Friday, September 14, 2001 at 11:12 AM (CDT)

Hello to everyone,
It's Friday again already. Eion's counts were good today so that is good. Next week we will stop spinal radiation and whole cranium radiation and just do tumor bed area. Hopefully this will help his appetite and counts. No word on MRI yet. I need to take a second to tell everyone how thankful we are for the wonderful Doctors and Nurses we have been blessed with. They make this experience much more tolorable. The events of this week are so horrifying words can not explain. Here we are fighting for our one precious life and evil people take the lives of so many. How could they possibly justify in thier minds this disreguard for life? I feel deeply depressed and shellshocked. I hope everyone is coping okay, it is difficult for all of us to try to make some sense of it all. Until next time, please take care of yourselves and loved ones. Angela

Thursday, September 06, 2001 at 08:26 PM (CDT)

Hello everyone, Check out some new photos we have for you. We recieved the fountain and plants we won from the benefit and put it together on Sunday. With a little help from my Dad, I think it turned out great!! We are very excited. Thanks to Rizzi's and whoever put our name on their raffle ticket! We will have more great pictures from Thomas etc. soon. One more day of radiation and antibiotics for the week. The weeks sure do fly by. Eion is starting to show signs of fatigue but is hanging in there. Everything else is going well. We are looking forward to the multitute of birthdays. Gabe 9-17, Ellie 9-23, Eion and Quin 9-25, and Kellan 10-1! P.S. I call it birthday Hell. ha ha. We will have much fun this month. Until next time. Angela

Friday, August 31, 2001 at 10:22 AM (CDT)

Hello all, This is the 3rd time I've tried to update our journal. Just as I finish the computer kicks me off. URG!! Anyway, happy Friday!! 3 weeks down, 4 more to go! Eion is doing well. His blood culture came back neg. this week so we are keeping the port infection at bay. Dr. Salvi said it will need to come out when we are done with radiation, hoping that we can keep it that long. Next MRI will be in a few weeks, we'll keep you posted of dates. I'll be honest, I feel a little let down after our big Thomas outing last weekend. We looked forward to it so long, I feel sad its over. So I have been looking for something new for Eion to look forward to. I think Halloween will be it. We have been having so much fun finding new, cheap Halloween decorations. Thanks Theresa, you started it all with the cool ghost lights! I think Eion does much better when he has something to look forward to. We aren't planning much for the weekend. We need to catch up on many long overdue home repairs. We want to be ready for you all at Harvest Fest! (Sept 29th weekend) We encourage everyone to stop by and say Hello. If you didn't know, we will literally be in the middle of it this year! We love all the great Fests in Plainfield. Hope everyone is well. Until next time. Love, the Rileys

Monday, August 27, 2001 at 06:17 PM (CDT)

Greetings from Union, Il.; wish you were all here...with us to see this town of 650 swell to at least 3,000 to see Thomas the Tank Engine at the Illinois Railway Museum, & to see at least 2 of his biggest supporters, Eion & Quinlan Riley, loving every mimute of it. The life-size Thomas really was an awesome thing to see, particularly if you have watched him race & chase around the island of Sodor. We kept our 1:30 appointment to ride in one of the 5 vintage coaches he was pulling (ours was built in 1912), & I must say that it was pretty exciting watching his train pull into the loading area. After a short ride, we proceeded to enjoy the rest of the Museum, which included train rides on an old Metra double decker train & an electric train that used to serve the old Brown Line. We also were able to view, climb in & on various old & vintage ralroad engines & coaches. I think that Gabe, Ellie, & Kellan probably enjoyed the latter part of the day more than riding on Thomas, but we all had a great time on a beautiful Summer day. Sorry we haven't updated everyone sooner on Eions' progress. He only had to spend the night on the 4th floor last week; he was allowed to come home with i.v. antibiotics which we are still giving him every 6 hours. His cultures continue to grow, & Dr. Hayani thinks that it might be his port that is infected. He went today after radiation therapy to have blood taken from his port & directly from a vein to see if either culture shows signs of growing. We'll keep you all updated as we know anything. In the meantime, he seems to be doing well with his appetite & general well being, so we are happy about that, at least.
Thank you all for the continuing cards & messages of support; it really means a lot to us to know that so many well wishes & prayers are with our little trooper. Stay tuned....

Wednesday, August 22, 2001 at 07:01 PM (CDT)

Hello, Everyone; The Rileys had an eventful day today. Therapy went smoothly & was capped off by Eion getting his stitches removed. His appetite is back (judging by how he ate pancakes when he got home), & he is acting & looking pretty darn good. The excitement continued at Toys R Us, where an anonymous Guardian Angel provided all the kids with a shopping spree (escorted by their mascot Geoffrey, & a very patient & cordial woman named Marcela), & you should have seen the Thomas stuff fly into that shopping cart! All the kids were able to take part, but the lions' share went to Eion, including the pedal driven tractor complete with plow that Eion happily drove out of the store. O.k., so we went slightly over our allotted limit: the tractor will work very well in his continuing therapy. By the way, hats off & many thanks to Toys R Us store manager Dave Koepke, Marcela, & everyone there who made this wonderful event possible, from the cake, balloons, & store donated treats, to a leisurely way we were allowed to shop. The only bummer of the day was the news that Eions' cultures, taken Tues., had sprouted, so at this writing, he & Angela are back on the 4th floor getting antibiotics. Hopefully, they will be back home soon, as we can give him i.v. antibiotics at home. Thurs., we should have results of his cultures; stay tuned. Thanks to all of you who have checked in to see how that boy is doing, & thanks for all the support, love & prayers that you have left for us. It continues to be a great source of comfort & strength to us. God Bless you all.

Tuesday, August 21, 2001 at 01:36 PM (CDT)

Hello to all, We had a great weekend (especially without having to go to the hospital!). We had a nice dinner with grandpa and grandma on saturday, and went to Lexi's funtastic benefit on Sunday. The kids had a great time! It was great to see so much love for their family. Yesterday after treatment, Eion just wasn't feeling himself. Then he started spiking with a 100ish temp and no appetite. Same today, so Dr Salvi checked him out and can't find anything. They took a blood culture, we won't know anything on that for at least 24 hours. He said it may be a virus. We are disappointed that Eion has to feel sick again so soon. It really has been wonderful to see him so full of energy. Well he had better be feeling great by next Sunday. For all who don't know, that is the day we ride on a lifesized Thomas the Tank Engine!!! Eion has reminded us and everyone else that we have tickets to ride Thomas since May 26th when I purchased the tickets!(Me and my big mouth)I hope everyone likes the new family portrait as much as we do. Until next time. As always thanks for the messages. Love, Angela

Friday, August 17, 2001 at 08:36 PM (CDT)

Hello to all, Eion is doing great. 1 week down, 6 more to go!! He had therapy today and Amanda says he can scale back to 1 hr of PT instead of 2 per week with the 1 hr of OT. We will also do the horseback therapy once a week. He has gain 6 lbs since surgery. He is up to 37 lbs. We havn't seen that in 8 months! Great to see hair growth and chubby cheeks. Kristy and MaryKay stopped by with the benefit totals today. We feel so fortunate to have them on our side. What great women!!! They have busy lives, to give us so much of thier time and energy is overwelming. We coul;d never express to them and Jennie our much they mean to us!!! They will keep us afloat and our credit intact and we could never repay that. Stop listening to the nightly news and take it from us; humanity is still very much good. Sorry we don't have the updated portrait as promised. It was accidentally sent ot New Jersey. Luck O' the Rileys?HaHa. We will post it as soon as it finds its way back home (Monday?). Until next time. Angela

Wednesday, August 15, 2001 at 08:30 PM (CDT)

Hello to all, It's wednesday and we have had two radiation treatments. So far everything is going well. The Doctors say we probably won't see effects ie. fatigue until three weeks or so into treatment. Eion is feeling really great. It is so wonderful to see him acting so mischieviously! He's calling Quin a "stinky head" right now. He has gained quite alot of weight and is actually getting his trademark chubby cheeks back! We went to the Field museum "free" day today for the butterfly exhibit. We had a great day! I think we all feel better when we can enjoy great family days like today. Once again, thanks for the wonderful personal notes, they mean so much to us. Until next time. Angela

Monday, August 13, 2001 at 11:09 AM (CDT)

Hello, Well we just got back from our 1st appt. at radiation. Today was a fitting so it took a long time. Tommarrow we will start radiation. Dr. Morgan said it sould only take 1/2 an hour tommarrow. That would be nice since it took 2 hrs today. Traffic was terrible this morning because of an accident. I don't know how to factor accidents into travel time! Otherwise all is well. Thanks for the guestbook entries! Angela

Friday, August 10, 2001 at 03:15 PM (CDT)

Hello to all, It has been 10 days since Eion's 2nd brain surgery. Eion is looking and feeling great! He has gained more than 3 lbs since surgery (probably because the chemo poison is out of his system).We met with Dr. Morgan today(radiation oncologist)and he seems optimistic and caring. I think Eion will be comfortable with him. He said we will have 7 weeks (mon-fri),instead of 6 because it will be less damaging to Eion. We are going to the P.O.P.S. carnival tommarrow and plan to have a fun weekend before we start the 5:30 Am wakeup calls to get to the hospital by 7:00am treatment.Thanks to all who went to the benefit Aug 3rd. Everyone I've spoke with had a great time. I'll write again next week after we have started radiation. Talk to you soon, Angela

Friday, August 10, 2001 at 03:05 PM (CDT)

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