History

Tuesday, June 24, 2008 8:59 PM CDT

Good Evening Faithful Readers!

Holy Cow! Tomorrow is my baby's 9th Birthday!!!!

I certainly don't have a clue where the 9 years have gone...it's moved so quickly.

I'm double extra tired tonight so this is going to be a shorty, with a full detailed report to follow all of the birthday happenings (remember birthdays around here last at least a week and sometimes longer if we're REALLY having fun!!!)

So tomorrow at 3:33 p.m. my beautiful little bald, turned toe-head blonde, turned bald again, turned dark, turning blonde again baby will be OFFICIALLY 9.

ALMOST double digits, I'm told.

Whew! Where did the time go?

We love you all -
g.

P.S. This is Ry and my "seester" Dasha when Ry was 1 year old!

Monday, April 7, 2008 9:10 PM CDT

Good Evening Faithful Readers!

As some of you already know and some of you will be reading for the first time right now, we had quite a scare last week on Wednesday. We landed ourselves an unscheduled trip to the 5th floor at Riley and a visit with our most wonderful Dr. Holly.

Let me back this truck up and start at the beginning....

On Thursday March 27th, Ryne came home after school and told me he really didn’t feel very well and that he wasn’t hungry. I didn’t think too much of it and told him he could try to eat a little but if he really didn’t feel like it, it was no big deal. Well, he really didn’t feel like it, but he made quite a few trips to the bathroom. In fact he really didn’t feel like it (eating that is) for the next 3 days, all the while still frequenting the bathroom. I knew that a couple of his buddies had a stomach bug and I attributed all of his “yuck” to the fact that his buddies were sick. Let’s face it folks, what 8 year old boys do you know of that wash their hands EVERY time they are supposed to and are extra careful when they are around sick people???

Believe it or not, I was still just thinking he was fighting this stomach bug......Derek, however, had been silently freaking out all weekend. I know Dr. Holly is shaking her head in disbelief right now). By Monday, Derek was bothered enough that he told both Ryne and I that he was worried and after Ryne fell asleep, Derek and I sat in bed and talked about everything that had been going on. In case any of you have forgotten, or you have been hit on the head by an anvil, you will remember that when Ryne first got sick in 2004, we thought he had.........the flu. He wasn’t eating and was tired and was going to the bathroom way too much and eventually started throwing up after he ate.......

Sound familiar?

As you can imagine after Derek pointed out all of his concerns to me, I lay awake most of the night worrying and praying for it “not to be”. Tuesday April 1st rolls around and Ryne heads off to school, still not feeling 100 percent but not feeling sick enough to stay home. Tuesday evening, Ryne said he just wasn’t hungry and despite the fact that we were having his very favorite, spaghetti and garlic toast, he barely touched his pasta and left the table without so much as a bite of his garlic toast. Later, after the night brushing of teeth and the getting ready for bed, Ryne walked into our room and coughed twice... Derek and I both said “get in the bathroom” loudly and urgently at the same time to him, we knew he was going throw up....and he did....for about 4 minutes. I looked over at Derek who was sitting on our bed, white as a ghost, and said “I’m taking him to Dr. Lori (his awesome pediatrician) tomorrow for a blood draw.” As Derek got Ryne brushing his teeth again and getting him in bed, I raced to the computer and fired off an email to Dr. Holly asking what specific tests I should ask for and letting her know we were worried, we were worried sick. I think I may have said we were about to load him in the car and head to Indy....maybe, I said that.

Dr. Holly emailed me back first thing Wednesday morning and told me what I needed to ask for and I printed off her email and headed to Dr. Lori’s office for a 9:30 appointment (by the grace of God, they had a 9:30 when I called at 8:30). After I gave Dr. Lori the email from Dr. Holly, we discussed a plan of attack and Dr. Lori suggested that we have a CAT scan just to be on the safe side. I think that Dr. Lori knows me sooooo well, that the CAT scan was just as much for my sanity as anything else.

Well, the CAT scan went smoothly enough and albeit long and the contrast really thick and gross, Ryne made it through with only one “poke” (needle stick) and the very nice CAT team guy named Rick was even able to get his blood draw from the IV site they made for more contrast. We headed back upstairs for directions and results from Dr. Lori around 12:45. Well, part of the blood work was back and was great and the other part (the part Dr. Holly wanted) wasn’t back yet and the radiologist had gone to lunch so we didn’t have any scan results just yet.

It had been a super long morning for Ryne and since I still remember the basics from blood school (thank you blood school lady – whose name I think is Marion) and had seen the initial blood work results with my own two eyes AND had seen the scan results with no huge looming abdominal tumor apparent, I just asked Dr. Lori to call us with the all clear as soon as she got the results. She said “great” and Ryne and I headed off to Wendy’s because he was “starving”.

We arrived home around 2 and I just sat down on the floor with the newspaper and some chips and salsa (because I was almost starving too) when the phone rang and it was Dr. Lori. I was glad she had the results until she said “George, I need you to sit down and take a deep breath”...I believe my breathing stopped just about then.

She told me that ‘although the blood work was fine the CAT scan wasn’t, there were lots and lots of lymph nodes in his abdomen that were enlarged and they were on the mesentery layer of his small bowel and she had already talked to Dr. Holly and that Dr. Holly wanted us to come to Riley with the films and that we needed to come today and we would be admitted through the ER...’ She said some other stuff too but I don’t know what it was and Derek was on his feet heading for the basement to get the suitcases.

We packed as Ryne was crying and we were crying but trying not to in front of him and we were saying lots of things to try to make him feel less scared......it truly was a blur and the next thing I knew we were out the door and on the road to SB Clinic to pick up films and then on to Riley. We were terrified and that is the only word that I can think of that even comes close to what we were feeling.

Outside of Rochester, I had Derek call (I was driving) Riley and have Dr. Holly paged...we had a few questions and frankly talking to her was the best thing that could have happened to us right then. She and Derek were talking and Derek kept saying stuff like “that makes me feel better, and I like that thinking” .

Sometime during the conversation she must have heard Ryne ask if he was going to have to have surgery again and she said “tell Ry that if he has to have surgery, I’ll pay him 100 bucks”.

Now, my dear friends, I know Dr. Holly fairly well and if there is one thing of which I am ABSOLUTELY sure it is this....she would never ever ever say something like that to a child if she didn’t believe it herself. With those few words, I began to breathe again, not consistently mind you, but breathing none the less.

It was decided that we would keep Ryne with us at the hotel Wednesday night and try to get some sleep (there should be HYSTERICAL laughter from all of you about now) and we would meet her on floor 5 at 9:00.

We arrived at the hospital the next morning and got some hugs from Dr. Holly and handed over the films, she took us with her to read them and showed us what the other radiologist saw. With that she said, I’m not even sure I want to re-run the blood work, why don’t you guys go hang out and I’ll take these to Radiology and get the experts to take a look.

We went downstairs and waited for about 20 minutes and headed for the elevators again to the place we never wanted to be in the first place.....Dr. Holly walked around the corner and looked at us and said “Benign” and that she was so NOT worried that unless we “made” her she wouldn’t even re-run the scan in 6 months! The lymph nodes were there, yes and there were lots of them yes, but they were most likely enlarged due to reactive swelling from him being sick with the stomach bug. We were so relieved that I felt like I was going to melt into a puddle right there in the hallway.

She told us to go home and to not be freaked out and we promised that we wouldn’t freak out as long as when she saw the original blood work with her own two eyes that she would email me and let me know that everything was okay. (And she did – of course).

After another round of hugs we headed for the elevators and then went to the chapel at the hospital to say thank you to God for listening once again to the desperate prayers of two very worried parents (and from what I have heard) and about 500 of our “closest” friends. We have been blessed again – our son is healthy and nothing else really matters. Perspective once again.

In an instant, I was right back where we were on January 8, 2005. You cannot keep your mind from wandering to the very darkest places in this situation, but even in the darkest of dark, there is this little pinhole of light.

Hope.

“We can live without hair....
we cannot live without Hope”.

It is as true today as it was 3 years ago.

We love you all –
g.

P.S. thank you all for the prayers, we appreciate them more than you may ever know.

Monday, April 7, 2008 9:01 PM CDT

Good Evening Faithful Readers!

As some of you already know and some of you will be reading for the first time right now, we had quite a scare last week on Wednesday. We landed ourselves an unscheduled trip to the 5th floor at Riley and a visit with our most wonderful Dr. Holly.

Let me back this truck up and start at the beginning....

On Thursday March 27th, Ryne came home after school and told me he really didn’t feel very well and that he wasn’t hungry. I didn’t think too much of it and told him he could try to eat a little but if he really didn’t feel like it, it was no big deal. Well, he really didn’t feel like it, but he made quite a few trips to the bathroom. In fact he really didn’t feel like it (eating that is) for the next 3 days, all the while still frequenting the bathroom. I knew that a couple of his buddies had a stomach bug and I attributed all of his “yuck” to the fact that his buddies were sick. Let’s face it folks, what 8 year old boys do you know of that wash their hands EVERY time they are supposed to and are extra careful when they are around sick people???

Believe it or not (I know Dr. Holly is shaking her head in disbelief right now) I was still just thinking he was fighting this stomach bug......Derek, however, had been silently freaking out all weekend. By Monday, Derek was bothered enough that he told both Ryne and I that he was worried and after Ryne fell asleep, Derek and I sat in bed and talked about everything that had been going on. In case any of you have forgotten, or you have been hit on the head by an anvil, you will remember that when Ryne first got sick in 2004, we thought he had.........the flu. He wasn’t eating and was tired and was going to the bathroom way too much and eventually started throwing up after he ate.......

Sound familiar?

As you can imagine after Derek pointed out all of his concerns to me, I lay awake most of the night worrying and praying for it “not to be”. Tuesday April 1st rolls around and Ryne heads off to school, still not feeling 100ut not feeling sick enough to stay home. Tuesday evening, Ryne said he just wasn’t hungry and despite the fact that we were having his very favorite, spaghetti and garlic toast, he barely touched his pasta and left the table without so much as a bite of his garlic toast. Later, after the night brushing of teeth and the getting ready for bed, Ryne walked into our room and coughed twice... Derek and I both said “get in the bathroom” loudly and urgently at the same time to him, we knew he was going throw up....and he did....for about 4 minutes. I looked over at Derek who was sitting on our bed, white as a ghost, and said “I’m taking him to Dr. Lori (his awesome pediatrician) tomorrow for a blood draw.” As Derek got Ryne brushing his teeth again and getting him in bed, I raced to the computer and fired off an email to Dr. Holly asking what specific tests I should ask for and letting her know we were worried, we were worried sick. I think I may have said we were about to load him in the car and head to Indy....maybe, I said that.

Dr. Holly emailed me back first thing Wednesday morning and told me what I needed to ask for and I printed off her email and headed to Dr. Lori’s office for a 9:30 appointment (by the grace of God, they had a 9:30 when I called at 8:30). After I gave Dr. Lori the email from Dr. Holly, we discussed a plan of attack and Dr. Lori suggested that we have a CAT scan just to be on the safe side. I think that Dr. Lori knows me sooooo well, that the CAT scan was just as much for my sanity as anything else.

Well, the CAT scan went smoothly enough and albeit long and the contrast really thick and gross, Ryne made it through with only one “poke” (needle stick) and the very nice CAT team guy named Rick was even able to get his blood draw from the IV site the made for more contrast. We headed back upstairs for directions and results from Dr. Lori around 12:45. Well, part of the blood work was back and was great and the other part (the part Dr. Holly wanted) wasn’t back yet and the radiologist had gone to lunch so we didn’t have any scan results just yet. It had been a super long morning for Ryne and since I still remember the basics from blood school (thank you blood school lady – whose name I think is Marion) and had seen the initial blood work results with my own two eyes AND had seen the scan results with no huge looming abdominal tumor apparent, I just asked Dr. Lori to call us with the all clear as soon as she got the results. She said “great” and Ryne and I headed off to Wendy’s because he was “starving”.

We arrived home around 2 and I just sat down on the floor with the newspaper and some chips and salsa (because I was almost staving too) when the phone rang and it was Dr. Lori. I was glad she had the results until she said “George, I need you to sit down and take a deep breath”...I believe my breathing stopped just about then. She told me that ‘although the blood work was fine the CAT scan wasn’t, there were lots and lots of lymph nodes in his abdomen that were enlarged and they were on the mesentery layer of his small bowel and she had already talked to Dr. Holly and that Dr. Holly wanted us to come to Riley with the films and that we needed to come today and we would be admitted through the ER...’

She said some other stuff too but I don’t know what it was and Derek was on his feet heading for the basement to get the suitcases. We packed as Ryne was crying and we were crying but trying not to in front of him and we were saying lots of things to try to make him feel less scared......it truly was a blur and the next thing I knew we were out the door and on the road to SB Clinic to pick up films and then on to Riley. We were terrified and that is the only word that I can think of that even comes close to what we were feeling.

Outside of Rochester, I had Derek call (I was driving) Riley and have Dr. Holly paged...we had a few questions and frankly talking to her was the best thing that could have happened to us right then. She and Derek were talking and Derek kept saying stuff like “that makes me feel better, and I like that thinking”. Sometime during the conversation she must have heard Ryne ask if he was going to have to have surgery again and she said “tell Ry that if he has to have surgery, I’ll pay him 100 bucks”.

Now, my dear friends, I know Dr. Holly fairly well and if there is one thing of which I am ABSOLUTELY sure it is this....she would never ever ever say something like that to a child if she didn’t believe it herself. With those few words, I began to breathe again, not consistently mind you, but breathing none the less. It was decided that we would keep Ryne with us at the hotel Wednesday night and try to get some sleep (there should be HYSTERICAL laughter from all of you about now) and we would meet her on floor 5 at 9:00.

We arrived at the hospital the next morning and got some hugs from Dr. Holly and handed over the films, she took us with her to read them and showed us what the other radiologist saw. With that she said, I’m not even sure I want to re-run the blood work, why don’t you guys go hang out and I’ll take these to Radiology and get the experts to take a look.

We went downstairs and waited for about 20 minutes and headed for the elevators again to the place we never wanted to be in the first place.....Dr. Holly walked around the corner and looked at us and said “Benign” and that she was so NOT worried that unless we “made” her she wouldn’t even re-run the scan in 6 months! The lymph nodes were there, yes and there were lots of them yes but they were most likely enlarged due to reactive swelling from him being sick with the stomach bug. We were so relieved that I felt like I was going to melt into a puddle right there in the hallway.

She told us to go home and to not be freaked out and we promised that we wouldn’t freak out as long as when she saw the original blood work with her own two eyes that she would email me and let me know that everything was okay. (And she did – of course).

After another round of hugs we headed for the elevators and then went to the chapel at the hospital to say thank you to God for listening once again to the desperate prayers of two very worried parents (and from what I have heard) and about 500 of our “closest” friends. We have been blessed again – our son is healthy and nothing else really matters. Perspective once again.

In an instant, I was right back where we were on January 8, 2005. You cannot keep your mind from wandering to the very darkest places in this situation, but even in the darkest of dark, there is this little pinhole of light.

Hope.

"We can live without hair....
we cannot live without Hope”.

It is as true today as it was 3 years ago.

We love you all –
g.

P.S. thank you all for the prayers, we still appreciate them more than you may ever know.

Tuesday, March 18, 2008 9:25 PM CDT

Good Evening Faithful Readers!

Holy Cow! It has been like, well, forever since I last updated! We have been busy, busy
and busy with all kinds of things from the very very fun to the very very not at all fun. Where do I start???

I’ll begin with Ryne Nolan...when we last visited, our hero and wonder-child, Ryne was oh so busy getting into the groove of third grade and getting really good grades and making Mom and Dad extra proud (like that was hard to do!!)
Ryne decided that he was going to play youth basketball in a YMCA league this fall. We were very excited about all of that but were left wondering how our young man who HATES loud noises, like crowds, and buzzers was going to pull this off. Derek and I decided that the “let him go and see what happens” attitude was our only option, so that’s what we did. Practices were Thursday nights and games were Saturday mornings so with Derek tied up at work most evenings Ryne and I settled into a nice little routine of homework, practices, homework, Super Nanny and other such educational TV watching on the weekdays and then we all attended the games together on Saturdays. Derek and I were really surprised at how much Ryne LOVES this game and how well he was doing (he has this shot from the “volleyball line” that pretty much toasted the other 8 year olds-hee hee) and when the first season was over, Ryne wanted to play in an Upward league that was hosted by a local church. Of course we said, “Great!” and the long-long basketball season just ended last weekend. Basketball is good and Ryne loves it so we are all pretty happy about that, and in case you are wondering how Ry did with the loud noises and the buzzers, the crowd noises he has learned to block out and the buzzer was only an issue for him if he was sitting out at the time it buzzed...we would look over at him on the bench and see him watching the clock and when it was just about time to buzz he would plug his ears!! What a smartie!!!

At the end of January we made a trip to Riley and had a checkup with our most wonderful and most pregnant again Dr. Holly who informed us that Ryne is doing fabulously and that after our July visit we may be moved (ahead of our initial schedule) to SURVIVOR CLINIC!!! Now, just how cool is that??? We are overjoyed that things have gone the way they have and that Ryne is most likely awesome enough to be moved early...and at the same time...clinic every year instead of every six months presents it’s own set of emotions for dear ole’ Mom. If you all remember, theses are the same feelings I’ve had to deal with every time they move us to another time segment between visits, so surely, I’ll adjust, just like all the times before...it’s just that little, nagging, screechie, voice inside me saying....
“What If. What if we miss some big sign again...what if...what if...what if” I’d love to be able to ignore that voice and thusly make it stop forever, but my dearest friends, I’d be a liar if I said that will ever be possible. And so we move forward, with one foot in front of the other, and when we are scared, we hold hands and trust God and that’s all we can do. And so we do.

Chaddie is awesome as ever. He is still racing motorcycles (gulp!) and loving it! He recently got third overall in his class for the season and now the outdoor season begins so here he goes again. It makes me happy that he is doing something that he loves even though I sometimes secretly wish that he would love something a little less likely to cause a broken neck or some other type of bodily damage...you know like, chess or cooking, or reading or painting. Oh the wistful dreams of the Mommie of two fantastic boys!! Oh yeah, Chaddie’s girlfriend Megan also races motorcycles and from what I hear she’s just as fearless as he is.........maybe I could teach her how to play chess (cause we all know cooking is OUT for me)....maybe Chad would follow...Oh, who am I kidding? I didn’t raise that child to follow anyone’s dreams but his own so on that note, I’ll just say I am very very proud of the man he’s turning into.

Derek and I are doing great and are looking forward to the pool opening and summer and a couple of getaway trips to Vegas and a trip to The Mouse with Ryne. Things are good in the land of us. In fact, we are going to Vegas in December to stand with Penny and Dave, our great friends, most awesome vacation buddies and the other two of the Vegas Fab Four, when they say their I do’s!!!!!!!!!!!!!!!! How VERY cool is that? We are both thrilled!

All of that being said...this weekend is Easter. It’s a big holiday for our family, we spend a great deal of time in church and have an opportunity to remember again what our religion is founded on. We have always watched the Ten Commandments either after church on Friday or on Easter Sunday and for the last few years we’ve added The Passion of The Christ on Good Friday night, after our little munchkin is in bed, the brutality of the “scourging” is nearly too much for me to take, I can’t imagine letting Ryne see that yet. All of my life the only word used was “scourged”, seeing what that entailed was...well, there are no words. Even so, it’s not the violence that takes my breath away, it is watching Mary watch what is happening to her son. It’s the feeling of helplessness; it is the shared feeling of watching someone whom you would gladly give your life for suffer and slip thru your fingers. We saw The Passion in a theatre with Chad when Ryne was just a baby (Ry stayed home with Grandma), during the parts when Mary was “flashing back” to Jesus’ childhood, Chaddie reached over and touched my arm and said “Mom? Are you okay?” We rode home in the car and not one of the three of us said a word. Later that night when Chaddie and I were talking I asked him what he thought of the movie and all he could say was “I just wanted them to stop hitting him!” As the years have gone by, watching The Passion has never gotten easier...I just can’t help but think of Mary and her pain at watching her baby.

I’ve said it before a million times and I’ll probably say it another million at least. No matter the person, from the greatest to the least, the most powerful to the most vulnerable.....

Everybody is SOMEBODYS baby.

Thank God for yours
and if you don’t have any of your own.....
Thank God for His.

We love you all-
g.

P.S. Ashley, I hope you like the flowers better than the snowmen!

P.S.S. Sean D. Welcome to our page and have an awesome Easter - the gorgeous men are in the picture with me. The one in the orange shirt is our "cancer kid" the tall one is Chaddie and the "other GM" is my hubbie Derek.
See? They really are gorgeous, and I really am George!

Monday, December 31, 2007 4:35 PM CST

Happy 2008 to
all of our family and friends!
We wish you all the best of
everything in the new year and
always!
We love you all-
g.

Sunday, October 21, 2007 9:31 AM CDT

Good Morning Faithful Readers –

I have been trying to get to this update for about 3 weeks now and have just not found the time until now. It’s Sunday morning about 9:50. Derek went golfing with his friends and believe it or not, Ryne is still asleep. I just went in and asked him how long he was going to sleep today and he said he wanted “more minutes”. That’s what he says every school day morning when his alarm goes off. One of us goes in to get him up and he says “more minutes” and we hit the snooze for him. He only gets one round of snooze though so when Derek or I appear for the second time, he knows it’s time to roll out.

Well, we have been pretty active since my last entry so I’ll try to fill you all in on the highlights – person by person.

We’ll start with the star of our web page...Ryne. Ryne has been busy at school and is trying to get really good grades so he can be on high honor roll. His idea is that he needs to be on high honor roll so that he can go to Notre Dame. A lofty goal indeed for a third grader, but he sure is working hard to attain it! His health has been great outside of a little cold he caught from his Daddy, and he’ll start basketball soon too! We are very excited about that and are waiting to see how it all shakes out. Remember that Ryne is not a fan of loud noises at all so it ought to be interesting. Before he got sick, we would go to Chaddie’s games and Ryne would either sit with his hands over his ears or he would wear earplugs. Maybe he’s outgrown the “loud noise” issues...we’ll see. He’s just a healthy, happy third grader and we are very thankful for that.

Riley is kicking off a fundraising campaign on November 14th and we were asked to assist in some marketing things. So keep your eyes and ears peeled for some of that to be hitting the local mainstream after Nov. 14th. We got to work with some really great people from Riley Children’s Foundation and from Innovative Marketing in Indianapolis. It was really fun and we have high hope for some great funding for the hospital.

Co-star of the family, Chaddie, is doing very well for himself too. He is working full time and we are discussing the start of college in January. Chad is just such an awesome kid. He’s very level headed most of the time and is totally responsible. I wish that he wouldn’t put so much pressure on himself but so far I can’t figure out a way to change that. He has just had his first vehicle issue in that the transmission on his truck needs to be replaced or whatever they do to transmissions....it’s really expensive and he’s plotting his finances. I think he’s doing a great job of that and I’m very proud of him.

Co-Directors and Producers, Derek and I are awesome. We just celebrated our 11th anniversary and went to Vegas for a short getaway. Our trip was great and it was a well-needed break for both of us. We are still trying to figure out a way to make 5 days seem longer. It just goes so fast. On one hand I hate to be away from Ryne and Chad that long but on the other, when we get home, we are like “Wow! That really flew by!”
I am just busy at the fire dept. and township office and real estate has been pretty slow as of late. Derek is blissfully happy with his new jobs. The job he just left was an awful place for a family-oriented person and he decided to nip it in the bud before it took a toll on what we are. (that’s pretty cool, don’t you think?) We have closed the pool for the winter and that is pretty sad, but not before Ryne, Derek, Jordan and Abbey went for a closing swim. It was 53 degrees outside and the pool water was a balmy 66. I decided to be the official photographer and hot towel hander-outer instead of swimming with the crazy people. At least there are leaves on the trees for this insanity swim, even though they are starting to turn.

On another note, our dear friend Matt from Fort Wayne has relapsed (A.L.L.) and he is facing more chemo to get him into remission and then on to a bone marrow transplant, they are looking for a marrow match and are having a donor drive on October 27. Please consider being tested, we can be tested here locally also. Go to Matt’s site at www.caringbridge.org/in/matthewk for details and updates. If you cannot be a donor, you can still be a pray-er or a supporter of another kind. If you want to help and don’t know what to do, e-mail me (georgeewald@comcast.net) and I’ll get you going in the right direction. Matt and his family have been a very big part of our lives since we met them at Riley almost 3 years ago. We love them and want desperately for Matt to be well, please help if you can. Thanks.

Matt’s relapse has shown us again how important the support of people who love you is. We have not forgotten what all of you did for us and for Ryne. The magnitude of what we were facing was overwhelming but the magnitude of the love we felt helped calm our fears.

There will never be adequate words to thank you all for that-

We love you all-
g.

Sunday, August 5, 2007 8:10 PM CDT

Good Evening Faithful Readers-

It has been quite some time since my last update and we have been busy as little bees working on the landscaping and trying to make the outside of our house look less like new construction and more like our home.

We had a trip to Riley on Monday and Tuesday (July 30 & 31) for a cancer clinic visit, blood work and check-up, neurology visit and another EEG. We were so happy to see Dr. Holly and even happier to learn she is now an official permanent fixture on the Riley Oncology team! We were a little worried that she was going to finish her fellowship and move on to another children’s hospital...I’m sure that she was very heavily recruited...and we feel very fortunate to be “stuck” with her!! I thought I’d take a new photo of she and Ryne as he is just about as tall as she is now. I’ll have to see if I can side by side the photo of them from 6 months ago so that you can see how tall he’s getting. The visit went well and his counts were fabulous! Ryne was thrilled to see his wonderful nurse “blonde haired Lindsay” and she wasted no time covering him with kisses. We love love love Lindsay and Dr. Holly so outside of the blood draw being a big ole “owie” with a big ole bruise to follow, our visit to the ROC was great. Neurology was good too although we don’t have any changes to report. The EEG still showed signs of seizure patterns so we’ll be leaving Ryne on the anti-seizure meds for another year and then re-test next July. Dr. Salanova seems to think that he may grow out of the seizure patterns as is common in children. We are hoping she is right. It’s not the worst thing that could happen – God knows worse things have happened- it’s just proof that he’s still not 100 percent from the ordeal. However, we are extremely thankful for the 98 percent that we have and we fully understand that there are way too many parents out there who would give their own lives to have a chance at our 98 percent for their own child. We are thankful every single day for every single minute we have been given.

I can’t believe it’s only two weeks until school starts! I’m almost depressed for the kids, it seems like summer just got under way. It will be nice to get back to the routine though. I know that Ryne is excited to start 3rd grade and see his buddies again. I just need to go out uniform shopping this week and we’re ready to go!!!

Derek and I have both been working loads of hours and trying to keep balance between work and our family. It’s not like you all aren’t trying to accomplish the same thing....it’s just tougher sometimes than others and all you can do is pray for some clarity and sanity and direction.

So, we’ll be here praying for all of those things –

and counting our blessings.

until the next,
we love you all-
g.

Wednesday June 6, 2007

Wednesday June 6, 2007

6:54 p.m.

Good Evening Faithful Readers!

Well, as promised, albeit a little late, I have carved out some time to fill you in on the events of the weekend, most specifically, Chad’s graduation.

Sunday June 3rd 2007. It was the big day for the Fairfield High School Class of 2007! Graduation was finally here and they could barely wait to get the little blue leather binders in their hands....Derek and I were driving to the school in the pouring down rain and hoping that it would let up before the end of the ceremony. The day was a mix of emotions for me as I went about the morning...on one hand I was really happy for Chad, yet on the other hand I was really sad, I was sort of mourning the end of his childhood I guess.

We got to the school and walked into the gym with Butch and Lori (Chad’s Dad and Step-Mom) and found four seats together which seemed pretty lucky considering that the gym was filling up fast and it was no less than 98 degrees in there. It wasn’t long before the graduates started lining up in the hallway to start their approach. Chad being a “B” (his last name is Brew) was very near the front of the pack of 139 classmates and Chad being the only 6 foot 7 person in his class made him very easy to spot. Now, here’s where it starts to get interesting (for me anyway). I looked up and saw him standing there through the doorway and the flood of tears that ensued surprised even me.

Here he was standing before me a grown man in a cap and gown with the soft and solemn “pomp and circumstance” playing in the background. But that is NOT what I could see....all I could see was this very chubby, blonde “muppet haired” toddler reaching out to me with his perfect beautiful little fingers wiggling and giggling because he wanted me to hold him....again. Flash. Then I saw the same toe-headed blonde skinny little boy with the cutest little haircut and his brand new backpack and his round cheeks and happy eyes, waving goodbye to me at the door of Sonshine Preschool on his first day. Flash. Then I saw the goofy 6th grader with his goofy best buddie Emily, both blonde haired and smiling a mile wide, ready to take on the world of middle school because they just received the “Zook” award together! Flash. Then I saw the same beautiful, well-mannered young man who cried with me like a baby on the last day of 8th grade because he was going to go to high school and stay at his Dad’s and for the first time since I was 21 years old, I was going to be without him. Flash. Then I saw the same boy, now very tall, and very very handsome smiling from ear to ear as he took the keys to his new car (his 16th birthday present from us), kissed me on the forehead and with a promise of “I’ll be safe Mom!” drove off to the freedom he’d waited a “lifetime” for...and the tears rolled down my cheeks. Flash. And then I saw him again, now, standing 6 foot 7 in his navy blue cap and gown, beautiful smile and spirit still intact, the entire world just waiting to be conquered. And the tears exploded. I couldn’t stop them and I told him earlier in the week that I wouldn’t cry (lies, lies , lies).

There is so much that I haven’t taught him yet, so many things that he needs to know, so many hard lessons that I should try to save him from, and the time was just so dang short. Where did 18 years go? Did I do a good enough job? Will he keep his promise and “be safe”?

It was a flood of emotions and my life literally flashed before my eyes. In every single snapshot and every single frame, there he was, growing up at warp speed. Where did the time go?

I always knew how proud he made me. I always knew how very much our lives were entwined. I always knew that he’s my baby, my first son.

I never knew how hard it would be to see him in that cap and gown!

We love you all-
g.

P.S. there's a picture of Chad on the photo page - go there

Friday, June 1, 2007 6:57 PM CDT
Good Evening Faithful Readers!

Well at least now Ashley, Wendie and Nancy will maybe (just maybe) cut me some slack about not updating in forever......maybe.

We have been crazy busy with lots of "new house stuff" like landscaping and trying to get sprinklers, sod, hydroseed and edging coordinated and it seems as if we are going to make it through all of this. It's soooooo nice to look out our windows and not just see dirt, dirt and more dirt!

As you can see by the photo, Derek and Ry wasted NO time flipping on the pool heater and making great use of the new pool in mid-April! BRRRRRR!! Notice that I am not jumping in...someone had to take the pictures! Ry is swimming every second and having a ball. The weather has been beautiful and we've only had to use the pool heater that one time (that makes me happy since NIPSCO doesn't give a rip that we are only trying to have fun!) As of yesterday the pool water was a refreshing 85 degrees!
Ryne's health appears to be just fine and he is just a completely happy, funny, cuddly 2nd grader. We are so thankful for every second with him that there are just no words to describe it. Maybe, gratitude, faith, strength, hope, miracle, blessing, humbling...those are all good words, but somehow seem to fall just short.

Speaking of short....

This is going to be a shortie update for now as I plan to update more after Sunday....Chaddie is graduating from High School and just thinking about how quickly the time went is overwhelming. My sweet little chubby, bald, screaming most of the time but still the apple of my eye baby, has grown to be a 6 foot 7 beautiful, kind, loving, level headed man and I couldn't be prouder of him.

I just can't believe how quickly the time went....
just imagining him from then till now...

wow and wow!

we love you all-
g.

Sunday, August 5, 2007 8:02 PM CDT

Wednesday June 6, 2007

Thursday, April 5, 2007 12:20 AM CDT

Hi Faithful Readers!

Just wanted to thank you all for your prayers for our sweet Matt (www.caringbridge.org/in/matthewk) in Fort Wayne, he is now home and is recovering in the comfort of his own bed!!!! But prayers are still needed and very much appreciated - so keep it up and THANKS THANKS THANKS!!

Also, on our front, the above photo is a copy of one of the billboards that Ryne has had the honor of doing for the South Bend Medical Foundation. There is another one up around town also and I'll try to get a photo on of that fairly soon.

We are on Spring Break (at home in the snow) and are feeling very well and attempting, albeit unsuccessfully, to rest up and relax. It seems that this has been one of our busiest, craziest weeks of all lately...and THAT'S pretty bad. Whew...I'll give you details at a later post.

Hope everyone has a blessed Easter. Thank you in advance for your continued prayers for Ryne's health, we are very blessed to have you all in our lives.

"The point is not to pay back kindness, but to pass it on"-Julia Alvarez

we will forever be doing just that in honor of all of you.
we love you all-
g.

Saturday, March 17, 2007 8:22 PM CDT

**********PRAYERS NEEDED*************
Hey! Our sweet Matt from Fort Wayne is in the hospital with pneumonia, he is really sick and we need to activate the prayer "hotline" a.s.a.p.
www.caringbridge.org/in/matthewk
Please pray for him and for his family!

thanks,
we love you all-
g.
**********prayers needed*************

Saturday,March 17, 2007 8:22 PMCDT

Good Evening Faithful Readers!

After just typing for at least 40 minutes to make a lovely new update, the very cool "Warning: This page has Expired" message has once again graced me with it's presence and now I'm peeved AND tired.

We have our own version of March madness going on around Chez Ewald. Fortunately, it's just the day to day chaos that we prayed so hard to return to way back when Ryne was sick.

We got moved into the new house without too many issues. There are lots of plastic storage tubs in the basement waiting to be unpacked and sorted but since I can't see them every second...they seem to be doing okay just waiting in the basement. There's plenty of time to go through those things....later. Right?

Ryne just got over his bout with the creeping crud that plagued the entire second grade. He missed all of the last week of school and Derek and I missed plenty of work. Even with Grandma and Grandpa pinch hitting for us a couple of the days it was still really tough. Of course, I sped him right off to the doctor on Tuesday after the pale, pale skin, dark eye circles, sleeping for 22 hours and not being able to shake his fever...I was in a mild panic. Dr. Lori did a couple of tests for us and it turns out it was just some virus thingie that had to run it's course. I probably over-reacted but this is the first time he's been really sick since "off-treatment". I know that we are very fortunate in that regard, it just freaked me out to see him so sick. Outside of that little sidetrack Ryne is WONDERFUL. Healthy, smart, funny, happy, polite, well-adjusted, active and very very cute!

Chad is coming over tomorrow to discuss further college details and we are planning a trip to visit the school he wants to attend over his Spring Break. College? Where did that time go? He is also just the greatest kid...Smart, really really funny, extremely driven (hmm..where do you 'spoze he got that?) cute, tall (6'6"), a little moody every now and then (he did NOT get this from me)and most definately his own man!

We are very proud of both of our boys!

Derek and I are doing very well and looking forward to the summer and finishing the outside of the house ie. the yard and landscaping stuff. I don't like it when things are unfinished...it makes me neurotic. (Stop laughing Nancy, yes YOU in Fort Wayne). I know that it will all get done eventually.

Ok enough rambling (for the SECOND time) for one update. Please continue to keep Ryne in your prayers always along with all of the other kids fighting this horrible disease. We can't even begin to thank you for all for the support that you have so graciously bestowed on us throughout this journey...

"Alone, all alone. No one can make it in this world all alone" Maya Angelou

Because of you, we'll just never know.

we love you all-
g.

Tuesday, January 30, 2007 6:44 PM CST

Good Evening Faithful Readers!

Again, we have just returned home from another sucessful...albeit long, long, long two day trip to Riley.

We started out with Cancer Clinic on Monday and a good report from our most fabulous Dr. Holly. She says Ryne is looking great and has decided to accelerate our visit schedule. Are you all ready for this? We now only have to go every 6 months!!! Holy Cow! Have we really come this far, this soon? It seems like yesterday on most days, but when we look at Ryne, it seems like a lifetime ago. We are actually comfortable with the 6 month visit idea. I'll admit, Derek is a little more comfy with it than I am but we are both at a really good place with Dr. Holly's decisions. So 6 months it is!!!
Counts were great and hand delivered to us written on a paper towel (because we are not the most patient of patients, if you hadn't already guessed) by our wonderful nurse Blonde-haired-Lindsay. Of course, she spent LOTS of time smooching Ryne and they got in all the hugs they had time for too. I can't tell you how much it means to us that they love Ryne the way they do. I would match our nurses and hem/onc staff against any hospital anywhere and I know that in terms of patient care we would be unbeatable! It reminds me of the sign that was posted somewhere on the set of M*A*S*H
"The Best Care Anywhere"

After we said our see ya laters we headed to the mall where the "Champion shopper Ryne" (who MUST get this from his Daddy) manages to purchase about $200 worth of Ralph Lauren wear for the bargain price of $62. They had some great sales at Parisian and Ry has a knack for finding them. After the exhausting shopping, we grabbed some great dinner at Champs and headed back to the hotel for some work out and then swimming. Whew! We were tired after all of that and snuggled down for some Super Nanny watching in our room. Ryne slept well and Derek and I didn't sleep a wink (par for the Riley days).

We got up this morning and headed for Riley Neurology where they were running just a few minutes (like 180) behind. Our appointment was for 10:30 and we finaly got to see Dr. Salanova at 12:30. The bottom line with Neuro is that Dr. S. is concerned that there will be another seizure if we try to wean him from the meds and we
(Dr. Derek and Dr. George) are wondering if his dose is even effective anymore anyway. We FULLY understand her point and our point is that when he was initially put on the Trilleptal he weighed about 48 lbs. he now weighs 97 lbs. and we've never increasd his dosage. So how effective is it???? That's the money question. We landed on a compromise to do ANOTHER EEG in July and then compare again with the assistance of the entire Neuro team.
If you are wondering what the heck the big deal is...you must be new...read back in the journal and it should become clear. We are still very torn.

Outside of all of that I am kinda tired, we are all kinda tired. We should be closing on the new house on Feb. 9th and the moving in the following week and we've been running all over the snow covered earth to put this house together. It will be great though and probably worth all the pain when it's done.

Okay, I have a little boy to get showered up and ready for bed so I better get a move on here. Please continue to pray for my little man's health, there can never be too many prayers. Also, please pray for our buddy Matt to finish his chemo without a hitch and NEVER EVER look back! And for Donovan's family, they will need our strength in the days and years that follow.

I told Melissa that I couldn't even fathom being in a place where my baby couldn't stay...

I pray to God every single night and thank Him for my chance not to have to.

we love you all -
g.

Tuesday January 16, 2007

Please pray for peace for our dear friends the Rasmussens. Baby Donovan isn't being given much of a chance and we really need a miracle. If you have time please visit his website at www.caringbridge.org/in/babydonovan
his Mommie, Daddy and big Brother could use some encouraging words and our prayers.

thanks,
we love you all-
g.

Saturday January 6, 2007

Good Evening Faithful Readers!

Here we are on the verge of Ry's diagnosis anniversary and I'm finding my self wondering what to do.
In case you find yourself wondering when it is...it's Monday January 8th. This will be the 2nd anniversary.

Do we do something special? Do we just let the day pass as if it's just another Monday? Do we bring it up to Ryne? He doesn't know the exact date, he just knows it was in the winter after Christmas...trust me when I tell you, Derek and I know the exact date. Last year we went to the beach and bummed around in the place we love. This year it's a school and work day, no beach for us.

It's not as if Derek or I will be able to ignore this day, this is, after all, the day that our lives changed on a dime. It's ironic now when I look back and remember how cloudy and fuzzy it all seemed, like a horrible dream, yet at the same time...this was the day that things began to be crystal clear for me and for us.

Clear in terms of things that "truly" matter and the things that "truly" don't. I saw us change. I won't say we grew up, because we were both grown up quite enough already, I would say that we "got it". After countless homilies at church and endless times hearing the old saying about the things that matter in you life not being things at all...we finally got it.

We had more than a few desperate hours in those days following the words..."your son has cancer". We wondered if there would be life altering physical changes, we wondered if there would be life altering mental changes and in the darkest hours, we wondered if there would even be a life...we didn't care about the physical or mental changes, we were ready for whatever hand we were to be dealt, we just wanted to save our son. No matter what it took.

In those hours, we realized that all we truly needed was "us". We needed our families, the ones related by blood and the ones we are fortunate enough to have chosen. We needed to draw strength from you all and from your prayers. And so we did.

We are not the same anymore. We are so much more than we were back then.

Someone told me that I would "build so many memories with Ryne while he was in the hospital"..I remember thinking that was the craziest thing I've ever heard. But looking back now, my memories aren't so much the chemicals, and beeping IV's and the shocking red urine and trying to calm Ryne's screams as they changed his dressings and lifting the once 65 lb. turned 40 lb. once rosy cheeked toe-head blonde turned pale bald joy of our lives into the bathtub while he shook uncontrollably because he was cold and scared and sore.
My memories are the sweet smell of the skin on his head as I lay all night in that little hospital bed with him in my arms with his hand over one of my eyes so he could "pet my eyebrows", the quiet nights around 3:00 a.m. when I could hear the sound of his breathing while I sat up reading by flashlight next to him in bed, watching Blue's Clues and hearing him giggle for the first time in days because I was dancing to the "mail song", reading him stories and making crafts, talking about what we were going to do when we got him home and well and just being "us".

I'll never forget those days and as stupid as it sounds, I wish everyone had the same opportunity (although NOT for the same reasons)to bond so closely with their children.

So here I am with the same dilemma I started with....
what do we do about Monday?

Let me know if you have any great ideas. Keep praying for my little angels health please. Without your prayers, we wouldn't be what we are right now-

just "us".

we love you all-
g.

P.S. Due to an overwhelming amount of requests for an explanation of what we ACTUALLY did on Monday..you all get a P.S.
Ryne went to school and we went to work - yuck to both of those - then we just hung out together in the evening. Things were pretty quiet on the homefront. I was pretty tense yesterday and I could tell that Derek was too. Ryne on the other hand was his typical, beautiful, smiling and hillarious little self. When we went to bed last night, I spent some time laying next to him and watching him by the light of his night light and thanking God that we have been given so much more time.
We are very fortunate and tonight and every night I will say many prayers for those who are not as fortunate as we.
we love you all-
g.

Monday, December 11, 2006 5:08 PM CST

Good Evening Faithful Readers!

We have just (and I mean just...like 15 minutes ago) returned from our most recent trip to Riley. Today Ryne had another MRI and another EEG. We will meet with the neurologist again in January to determine if there have been any changes in any of these areas and if not maybe we can convince her to start weaning him off the Trileptal. Maybe....
I'm kinda on the fence about this. As much as I'm against giving him more chemicals (especially if he doesn't need them) the other side of me is TERRIFIED that there will be another seizure. It was one thing having the seizure when we were right there at the hospital and they were able to "bag" him and get him intubated right away, and it's another ball game entirely to take a chance of another seizure so far away from Riley. I am praying for some definite answers and hoping against a "well, we can TRY it and see what happens". I don't even want to think about another seizure...let alone one where we are at the mercy of an unfamiliar hospital for even a short period of time. We had our share of question marks last time we were at Memorial but I will say, the best thing they ever did was "admit" that they didn't know what was wrong with Ry initially and suggest we head to Riley. When we got to Riley, it took Dr.'s Vic and Engum a collective 10 minutes to read the CAT scan and tell us they were 99.9ure it was Byrkitt's. Hearing it was cancer sucked, but seeing the look of confidence in their eyes made ALL the difference. It was clear that they were NOT guessing. And for that we will remain eternally grateful.

Outside of our trips to Indy, we are busy watching them build our new house and getting ready for Christmas. I should post some new pic's on Friday.

Things have been good here, nice and quiet in terms of drama. And who couldn't use less drama?

Well, I better sign off for now and fix my fellow road warriors some dinner. So until the next, take care and stay sane this holiday season.

Count your blessings everyday and trust that when we count ours, you all are included among our biggest blessings of all.
We love you all-
g.

Monday, October 23, 2006 4:41 PM CDT

Good Evening Faithful Readers!

What is up with the snow and cold cold cold???? It's only October for cryin' out loud!

We left for Riley in the wee hours of Monday morning (10/16) so that we could meet Sarah at The Ronald McDonald House and give her our tabs and the can full-o-money before we needed to be at clinic at 11:00. This seemed like an easy enough task and it turned out to be just that!

Sarah met us at RMH and boy was she surprised to see the amount of tabs we had for them. I told her on the phone that we had two big ziplock bags full...I don't think she knew about the Ziplock XL's yet though. She was probably thinking two of the gallon bags...what she got was about 40 lbs. of tabs that we pulled in a wagon. She had a crown for Ry to wear that was made out of tabs and said he was the "Tab King". The crown was very cute even though Ry tried to convince us that it was poking his head just so that he could take it off. The photos are attached. Remember the "party at the pier" we talked about in the last journal entry? Well, that's where one whole HUGE Ziplock of tabs came from and the other one came mostly from Ry's Great Aunt Joyce, his uncle Derrik (my baby brother), his Aunt Dasha (my little sister) and from "Mulberry" (our friend Barry that used to work with Derek). Remember when Ryne told nurse Kelly about Mulberrys "drug use" during a spinal tap?? (now THAT was funny!) Anyway; the grand total of cash was $720.50 and with the huge bags of tabs to boot from the party: the folks at RMH were just thrilled. What a great way to start our Riley day.

From there it was off to McDonalds for some very quick McNuggets (as Ryne was about to "perish" - his word).

After he scarfed down the Nuggets, it was off to the ROC for some blood draws and a visit with our most fabulous Dr. Holly. Ryne's counts were better than great and were delivered by one of our very favorite nurses in the whole wide world "blonde Lindsay". As you may recall, we had three nurses named Lindsay, so Ryne called them "blonde Lindsay, curly hair Lindsay and plain old Lindsay (who by the way was anything but "plain". Blonde Lindsay always wants to be smooching Ryne and he is always trying to get away, but the minute she leaves, he's looking for her to come back.

We had a great visit with Dr. Holly and bombed her with question after question. In true Dr. Holly form, she answered every single one without ever acting like "my God, you are taking my ENTIRE afternoon". We landed on a joint conclusion that Ryne will be visiting the Endocrinology Dept. for some tests and a consult on November 9th. I'll give you the details when we get them.
Not to worry, he's probably just fine, we may just need some chemical assistance to make sure his physical age and his actual age match up better.

After a very long day, we headed back North, of course with a stop at Karl's in Carmel (it's Applebee's, Karl is always our waiter...more Ry-isms) and continued to drive the rest of the way home, while Ry slept and Derek and I talked about how blessed and lucky we are.

We really are.

until the next,
we love you all-
g.

P.S. I spoke to Gina at South Bend Med yesterday and the blood bank is very low on all blood types....here I go, up on the soap box!!! Please, please donate blood this week, do it before Friday. You can go anytime without an appointment to Edison Lakes from 7:30 a.m. to 7:30 p.m. Please, somebodys baby may be depending on you and remember "EVERYBODY is SOMEBODYS baby!" Tell them you are donating in honor of Ryne and you'll get an extra cookie! (okay, the truth is you can have as many cookies as you want anyway....just looking for a way to get you all there - he he!)

Wednesday, September 27, 2006 5:47 PM CDT

Hello Faithful Readers!

Wow, have we been busy since my last update. I'll give you a quick rundown of what Team Ewald has been up to in just a moment but first....I'll give you the most important update of all....Ryne!
Ryne began 2nd grade on Aug. 28th and is off to a great start. We just got his mid-term report and he is getting all A's and B's and we are very proud of how dedicated he is to making good grades and learning. He has the cutest little friends and his teacher is just awesome. (Even thought she was going to put me on the "questionable Mommie practices" list last week...I'll explain later). He looks healthy and we can only assume by his behavior that all is well health wise. We don't go back to cancer clinic at Riley until October 16th. Going every 3 months has it's certain advantages, but waiting 3 months between counts can sometimes be a little scary after getting used to counts everyday and then every 30 days. Ryne even had his first professional massage the other day and he LOVED it! We made a trip to the day spa before our big Light the Night walk in Fort Wayne and Ryne was treated like the little prince that he is! He is soooooooo cute and I am sooooooo biased!
Chad is also doing very well in school and is getting straight A's!! He tells me it's because he is "el-smarto", I'm not so sure about his Spanish, but it sounded like a valid reason to make good grades to me. We are going to start getting the college apps. around in the next two months. YIKES!!!!! He's talking about college in Florida or maybe Arizona. I think he should go to UNLV and get a degree in hotel management or casino hosting with his ability to SHMOOZE he'd be a natural!

Team Ewald has been hard at work too! Wait 'till you see the October update and see all of the pop tabs that we have collected for RMH. Our friends (and fellow slip-mates of my Dad and Pammie) Bob and Donna came up with an idea to have a benefit for RMH in honor of Ryne. The event was scheduled to be held at Pier 33 in St. Joe, MI on ND vs. Penn State Saturday. Bob and Donna hired a band that played before and after the game, we had tons of food, plenty of beverages, a GAZILLION pop tabs were collected and quite a nice pile of cash. We will be delivering all of it to RMH on Riley campus on October 16th. They are going to be so happy...and right before the holidays to boot! Way to go Bob and Donna, the whole evening was a huge success!!!!!

The second Team Ewald event was held just this past Sunday. We were honored to be asked by my dear friend Nancy (Matt's Mom to all of you caringbridge faithful) to walk in the Light the Night walk with them on Team Never Give Up! Of course we agreed right away and got busy collecting donations for the Leukemia & Lymphoma Society! Last I heard Team NGU had topped $10,700! The walk and festivities were great and even greater than that was spending some time with the Fackler-Vinson's. We love them as if they were our own!

Last but not least, Team Ewald has relocated. Yep! We sold our house and are building a new one! Contact me for the address info. The moving was a nightmare and I almost had a few nervous breakdowns along the way, but we are now settled at my Dad's for the next 4 months until our new house is done and then we get to move again! Betcha wish you were me huh?

Speaking of that, I have to run and help Dad finish cooking dinner. Look for updated photos in the next day or so!
Until the next, take care, keep praying
and never forget
we love you all-
g.

Monday, August 7, 2006 7:53 PM CDT

******UPDATE AUGUST 22,2006********
We need prayers and we need them NOW for Baby Donovan and his family. His website is www.caringbridge.org/in/babydonovan
He has relapsed again and we need all of you to pray for a miracle...
please-
we really need you-
we love you all-
g.

August 7, 2006

Hello Faithful Readers!

Well here we are only two weeks away from school starting up again....where in the heck did our summer go????
It flew by so fast we can barely believe it. We are getting Ry ready for 2nd grade, we've met his new teacher and we are convinced that she is going to be just great!

Lots of things have happened since I last updated. The most significant of these things was the passing of my Grandpa. The photo above was taken on his birthday July 18, 2004. He looked the same for most of the rest of his days with us, smiling and happy. Those of you who know me best know what an influence Grandpa Carl had on me and what an important place he has in my heart. I was fortunate enough to visit with him on one of his last lucid days and was able to tell him how much I loved him while he was able to hear me. We were all fortunate enough to have Grandpa Carl on this earth for 95 years (he passed to the next life 3 days after his 95th birthday) and feel extremely blessed that in all of those 95 years only during the last week of his life was he unable to communicate and engage in conversation with us. He loved his family so very much. He was a wonderful testimony to the term "blessing in disguise" (he could turn the craziest pot holes of life into mere speedbumps), he lived his life with integrity, honesty, tenacity, love and always with God. The world would do well to try to be just a little more "Carl".
So Grandpa Carl, rest well, I love you and..."I'll see you later!"

Ryne had a Riley ROC visit and an EEG and Neurology visit on July 17 & 18. Things went well in both places but not yet well enough to start to phase out the anti-seizure meds. We'll get there sooner of later. If the worst thing that ever happens is that he takes meds twice a day...then we are GOLDEN. And so we wait...... more EEG and MRI in December and then we'll re-check. Outside of that he looks and feels great. He's growing up so fast and he is still the sweetest thing God blew breath into. Derek and I are blessed in so many ways.

Chaddie is doing great and we have senior pictures tomorrow night. A SENIOR!!!!! Where did that time go????
He and I went school shopping on Saturday and I think he is just about squared away in terms of supplies and clothes.

All in all we are still feeling truly blessed and we are as focused as ever on living a good life!

I'll update again soon...enjoy the rest of your summer!
we love you all-
g.

Wednesday, June 28, 2006 9:57 PM CDT

Good Evening Faithful Readers!

I must confess, I have not ignored my duties as the "recorder of events". The truth is, I actually spent about an hour updating the page a few weeks ago and then got that beautiful "page cannot be displayed" message that I love so well and was much too tired and much to frustrated to try to recreate what I thought was a wonderful entry. Everyone join me for a big ***sigh***!

Well, we have been busy being summer folks. And just when you thought you should be feeling sorry for Ryne in "daycare" all day. The photo above is of Ryne and his "sisters". You will all remember that Ryne has an entire other family in Wakarusa complete with his "Yowie and D" (Laurie and Derek) and his beautiful sisters. I am fairly confident that they like him a little, aren't you? He is a lucky little man in more ways than one...frankly, Derek and I are feeling pretty lucky to have them as well!

Ryne turned 7 on Sunday the 25th of June! I can't believe how fast seven years can move by. He is growing and healthy and happy and smart. We make a return visit to Riley on July 17th for an EEG, labs and a check up. I am just so proud to be his Mom. We have come down such a crazy road. I remember telling Derek when Ryne was REALLY sick that "this is so much more than we signed up for, how are we going to make it?" That seems like such a stupid question now, the answer was obvious. TOGETHER! That's how you make it through what we've been through. You keep your eye on the goal, your faith in God and the doctors and nurses and you stick together.

Chad is doing great and is working his tail off this summer. He has some big plans for a new vehicle and we'll have to see how that shakes itself out. Insurance is awfully "spendy" when you are a 17 year old young man. Nonetheless, I am extremely proud of Chaddie too. He has this insane work ethic that I would like to think he got from me, but when I was 17 I wasn't nearly as focused as he is. He has a goal in mind and ("Katie bar the door") he's going to achieve it.

I'm just so full of thanks for both of my boys.

Derek is doing well and has a new job he is trying to get used to. He has been spending a substancial amount of time commuting and is working about 2 minutes from the beach. It's hard to stay at work when the sand is singing your name, I'm sure. He and Ryne are golfing up a storm and having a great time.

It's all good....

I am exhausted so, I'll update you on our other summer happenings a little later. I haven't slept since April and the time change and as a result I am not a fan of "G.W.'s Man Mitch!". I'm going to turn in an hour early tonight (11:30 instead of 12:30) and see if I can't get an extra hour of sleep.

There is, however, one more minute to remind you all that the blood banks are all counting on you to continue to donate (my friend Karen just made the 11 gallon donor club! WOOOHOOO, thanks Karen!). There are some of the most beautiful children I've ever seen and had the pleasure of meeting counting on you too. Please don't let them down.

Have a safe and happy holiday weekend.

until the next....
we love you all-
g

Monday, April 24, 2006 7:14 PM CDT

Good Evening Faithful Readers!

Today marks an almost huge milestone! We have just returned from our April trip to Riley and Ryne's counts were great so this makes us "12 for 12" in the words of Derek! Wednesday is actually his one year off treatment anniversary - but I think we are going to spend most of the week celebrating.

We are truly celebrating our survivors this week. Firstly Ryne being cancer free for a year and secondly it's the 14th annual "Thank God, Mitch is alive day". In case you are scratching your heads about what Mitch Day is....May 1st is the day our friend Mitch was shot. He was a South Bend Police officer at the time and he was shot during an ambush by a coward juvenile with a gun. He was shot multiple times in the lower back and legs, called in his own "May Day - officer down", underwent major surgeries to unhook parts that were failing and then again to try to put the pieces back together. They were as successful as could be expected but it was not without a price. Mitch is paralyzed in one lower leg and his foot - but you'd never know it the way he plays tennis - Yep tennis! All the while his wife Lynn, who happens to be like a sister to me, was scared to death that their two year old daughter Courtney may grow up without her Daddy and Lynn would be a widow at the age of 26. As odd as it sounds, we have gone out to dinner on May Day for years to celebrate - this year we'll just have another survior to add to our celebration.

Okay now for a what's going on at home update. Courtney (mentioned above) and Ryne are truly like brother and sister (she's 15) and she taught Ryne to text message on Saturday night - so now he's taking my cell phone and texting God know's who - whenever he wants. THANKS COURTNEY! Now maybe he can teach my mom how to work her cell phone! And not only is he a techno genius, he lost another tooth - he's growing up right before our eyes.

Chad is busy working and getting great grades and getting ready to go to the prom with his girlfriend Jess. We went Saturday to get his tux and I'm certain that they'll look gorgeous.

Derek and I are just doing what we do and loving those boys of ours. It's been great! And we are really looking forward to summer.

Please keep sweet Micah's family in your prayers as their little angel earned his wings yesterday at 10 months old. Their faith is amazing!
www.caringbridge.org/al/micah

As our milestone nears and we may start to breathe again (just MAYBE), I've had a chance to let the magnitude of what all of you have done settle in. I'm thankful more than ever for all of the love and support and prayers and help we received when Ryne was fighting this awful disease. I'll say it again at the risk of sounding like a broken record.. Thank you from the bottom, top and middle of our grateful little hearts. We couldn't have done it without you.

Until the next...
we love you all-
g.

P.S. Please also take a moment and visit baby donovan's site at www.caringbridge.org/in/babydonovan They could certainly use the extra prayers and kind words right now. There's even a way to donate to the donovan foundation if you wish! We've know them since he was 6 weeks old and are quite fond of their whole family.

Monday, March 27, 2006 6:18 PM CST

Hey Everybody!
Again, I am remiss in my duties to update. *Sigh* If only the business of life would slow down a little!

You know, one of the things that Ryne's cancer gave us all was such a new perspective. The things that would have sent us into a spin before are merely a ripple in our days. The outside events or committments that we would have easily agreed to before are now weighed carefully against the family time it will cost before we say "okay!". It's a great feeling. I am sorry that it took Ryne getting sick to get our attention, but now that we can "see" what we weren't "seeing"...things are so much, well, more.

We have news!!!!!
Ryne is a famous star now (as if he weren't before) and he has his own billboard to prove it! It's on Michigan Street just past the Center for the Homeless and before you get to the overpass and it's just so very cool. I posted a photo of it - so make sure that you go to the photo section and check it out! It's for the blood bank and if you know me at all, you know how strongly I feel about the need for volunteer blood donors. Even before my baby was the one needing transfusions and platelets, I was always trying to convince someone to go give blood. Volunteer blood donors are saving lives daily. I used to think that donor blood was used only for trauma victims or for surgery patients...that is simply not so! BLOOD IS MEDICINE! It saves cancer patients and sickle cell patients and so may others! I urge you again, if you can, please give blood. You could be saving somebody's baby...and Everybody is Somebody's baby!

Ryne's Riley visit on March 20th went off without a hitch! Perfect counts, Dr. Vik, Dr. Holly, Dana and Kelly! Whew! It was a star studded trip to be sure! I even got a photo of Ryne and Dr. Holly (posted as well) - you see the only other photos I had of the two of them were on March 1st 2005 (for those of you keeping track at home, Dr. Holly gave birth to Lucy on the 7th of March 2005) and Dr. Holly was EXTREMELY pregnant. I struggled to get a photo while the two of them weren't goofing off - but getting a photo of a unicorn would have been easier! They are mostly always messing around and poking at each other or something -it's a sight, but Dr. Holly remains our hero and a true Godsend!

We were so completely relieved to get those great counts that I almost (almost) forgot for a second that my sweet Chaddie wrecked the car on Saturday! Again - merely a ripple (albeit an expensive one)- he wasn't hurt and that is the ONLY thing that truly matters! We can replace a car, but our Chaddie is one of a kind and priceless - and so we move forward.

Well, outside of Ryne having a cold right now - we are very much as normal as can be and loving every minute of it!

Thank you for your continued prayers - we truly couldn't have come this far without all of you pushing ahead for us when we couldn't do it for ourselves, praying without cease and lifting us up the rest of the time.

Until the next.
We love you all-
g.

Monday, February 20, 2006 4:17 PM CST

Hey Everybody!

Well, I'm kinda frustrated right now because I just got done typing a new update and when I hit "save" I got a page cannot be displayed message...so here it goes again!

Wow, I can't believe I haven't updated for over a month now. We have just returned from our February trip to Riley and are pleased (not to mention relieved) to announce that Ryne's counts were just where they are supposed to be! We got to see Dr. Hill today as our mostly fabulous Dr. Holly was out ill. (Feel better soon Dr. Holly!) While we love Dr. Hill too, we really miss our Dr. Holly and now it's been two visits in a row that we didn't get to see her. *sigh* However, we did manage to get a visit in with Dana!!! As you recall, Dana is Ryne's primary nurse and we haven't seen her since September as she was busy being a new Mommie to the beautiful Miss Reese! It was great to see her again!

You know it's so hard to describe the anxiety that we feel before we get those counts back. Although we are always hoping and praying for the best, that nagging little spark of an idea is always just lurking in the back of our brains and the memory of when he was first diagnosed comes rushing back. Yuck! Although I think we deal with that the best way we can, I think we are both realistic enough to know that it will probably never go away (the awful memory that is) completely. But, enough of the parental momentary psychosis report.

Let's get to the good stuff....Ryne is doing just great!
He is truly growing up right before our eyes. In fact he's grown 1 3/4 inches since his last visit to Riley (January 24th) and he weighed in today at 73.3 pounds. To think that it was only one year ago that we left the hospital with him on IV nutrition at 45 pounds astounds me.

He is doing really well in school and has a ton of the sweetest little friends you'd ever want to meet. He is reading and doing math and learning money and science (lots about magnets) and he loves all of it! He also wants to take up Tae Kwon Do and the electric guitar. Wow, sounds like fun 6 year old boy stuff to me!

We also took him to see his first movie in the theatre last week. Up until now, he's always said that the theatre would be too loud for him (he hates loud anything) so we just never took him. When we heard that Curious George was coming we made a date for opening night right on the spot! We (I mean Ryne, okay, me too) LOVE Curious George. All was great at the movie until The Man with the Yellow Hat (whose name was Ted in the movie) decided to send George back to Africa on a boat *gasp* in a cage. Derek and I never saw it coming but Ryne had a mini meltdown complete with crying and a blotchie face that lasted at least 10 minutes but seemed like an eternity. This continued until I could convince him that there was going to be a happy ending. Good thing we didn't take him to see Bambi huh? No "happy misunderstanding" there!

Even with the intermittent drama we are happy to report all things normal!

Please continue to pray, not only for Ryne, but for all familes facing childhood cancer. It truly is the scariest most uncertain thing that there is.

Not everyone is as blessed as we have been.

We love you all -
g.

Sunday, January 8, 2006 7:56 PM CST

Hey Everybody!

ONE YEAR AGO TODAY......

We were just learning that Ryne had cancer. We were just arriving at Riley ER and talking with Dr. Scott Engum and Dr. Terry Vic. We were just starting to absorb the words they were saying. We were just being told what needed to be done to save Ry's life.
I remember thinking "so all those Mom's that I hear on the St. Jude's Radiothon, have heard these same words. This is how it happens, you are just on auto pilot one minute and the next minute- we are "those other parents", we are now them, we have a child (practically a baby) who has cancer.
This is just how they say it happens - NOW WE ARE THEM."

The rest of that evening is mostly foggy except for a few things that stick out in my mind, I am sharing these things with you as a method of clarifying what was, until now, just left unsaid.
1. Dr. Engum was explaining to us what was going to happen and then he looked over at Derek and saw his eyes glazed over and said to me " do you understand what I am saying?, now repeat to me what I just told you."
I said "you are telling me that my baby has cancer. He'll need to have surgery to remove the tumor and then we'll talk about therapy after you type the tumor. By therapy, do you mean chemo?"
Dr. Engum - "yes."
Derek - "we are going to fix this."

2. When the 5th floor phoned down to the ER that they had a room ready for Ry and we started that way, we got off the elevator to a bright gold sign that said "Riley Childrens Cancer Research Center". I remember thinking that the words Children and Cancer should not be together.

3. We wheeled Ryne through the doors and saw this huge dry erase board with all of the room numbers, patient names, nurses and staff assigned to them listed. I remember seeing "5122 - Ewald" and thinking that I never wanted to see his name someplace like that.

That night the grandparents went to the hotel across campus that would become a new home for Derek and I. Derek slept (if that's what you call it) on what would go down in history as "the prison cot" and I slept (if that's what you call it) curled up at the foot end of Ry's bed, listening to the monitors hum and wondering what was next.

Most of the rest of the story, you, our faithful readers, already know.....

FAST FORWARD TO JANUARY 8, 2006.......

We decided that it would be nice to turn this historically bad day into something good so we hit the road and ended up in one of our favorite spots....the BEACH! It was windy but unseasonably warm at 45 degrees and we walked along and threw rocks into the water and found "beach glass" and 40 cents and a cool brick that we "had" to bring home and took tons of photos. What a difference a year can make.
I realized today that there are so many opportunities in our lives to let events define who we are or what we become and it can easily go bad or good....it's all up to us.
Kinda like our future.....
one step at a time, with one foot in front of the other.

When you are scared, hold hands and keep moving forward...at the end of the bumpy road and the scary, dark woods, there's beautiful sunlight and if you're really, really lucky........some sand!

We love you all -
g.

Tuesday, December 27, 2005 10:16 PM CST

Hey Everybody!
Just a super quick update to let you know that we have some very very big news here!!!
RYNE LOST HIS FIRST TOOTH TODAY!!
At about 12:30 this afternoon, eating an Airhead at his "Grandma's" in Wakarusa with his Laurie. Photo attached. Seems just as it should be...took his first steps with his Laurie, ate his first real carrot for his Laurie, swam with no floaties on for his Laurie....*sigh* you get the idea.
Truly, our little boy has an entire "additional family" in Wakarusa and the surrounding area. Outside of Derek and I, Chad and a small handful of Grandparents, you'd have to go a long long way to find someone who love's Ryne more than his Laurie & "D", his "sisters" and Ryan, Grandma and Sissie. We are truly blessed. And, our RyRy is truly growing up!

By the way his December counts were as perfect as perfect can be and again...we are truly blessed.

We love you all-
g.

Monday, December 12, 2005 8:02 PM CST

Hey Everybody!
Well you can clearly see how well my last plan worked out. I am just now updating. Like one month later...sigh.

Ryne is doing fabulously and we have been working hard on painting his bedroom (you know a bigger boy bedroom is needed when you are 6 after all). His new furniture is scheduled to arrive on Thursday and we're going to be ready!

Thanksgiving has come and gone and we are well on our way to Christmas - time is just flying by! We are remembering last year and how we were so worried that Ry was not eating and wondering what the heck could be wrong...whew, we'd NEVER have guessed what 2005 had in store for us. Looking back it seems like just yesterday and then again it seems another lifetime ago. Still surreal to be sure.

We are all but ready for Christmas and are more than ready for the new year to begin. The gifts are almost all purchased and wrapped and the halls are decked and Ryne and I are gearing up for our annual Gingerbread Man sacrifice by oven...no, wait, I mean baking day. Yeah, baking day! We have always made some gingerbread men and we make this enormous mess in the kitchen and then inevitably burn at least one batch to cinders. Last year my Fire Chief was the lucky recipient of the "very well done" gingerbread men. What a sport he was..he even managed to look grateful when Ry handed over the ziplock baggie chock full of burnt cookies...TAAAA DAAA!

Derek and I just returned from a cool 4 days in Vegas courtesy of the other half of the Vegas fab-four (Penny and Dave). The trip was officially named the "Adult Make-A-Wish" and unofficially named "the Give George The World Trip". We had zero sleep and many more than zero cocktails and lost a few more than zero (but not many)dollars gaming and had a ball doing it! It was great to be in the 55 degree desert versus the 9 degree Granger, but we came home about an hour before the lake effect snow storm hit. We were lucky to get home when we did. Thanks a gazillion to Penny and Dave for a great time...by the way Penny...Willis has a cold now....I wonder where he got it??

Chaddie is having a birthday on Sunday!!!! 17! Holy Cow! Wasn't he just turning 6 himself? 6 foot five, size 14 feet, driving, good grades, a cell phone and a girlfriend! My first born is quite a young man. I couldn't be prouder of him!

I am working on a New Years letter instead of Christmas cards..I have a lot to say this year it seems. Well, we are off to Riley again on Sunday for an early Monday morning appointment.

Please keep Ryne and all of our "Riley kids and Families" in your prayers this Christmas season.

"Peace" takes on a whole new meaning when your child has cancer. Peace of heart, peace of mind, a peaceful soul, or a peaceful nights sleep...peace on earth, world peace.
Serenity...
It all paints the same picture...it's just that the people in our new picture have central line's and IV's and no hair and dark circled eyes and puffy faces from steroids and Mommies and Daddys with puffy eyes from crying and worrying...and through it all, the strongest spirits I've ever seen!
God Bless each and every one.

Peace -
We love you all-
g.

Monday, November 14, 2005 7:36 PM CST

Hey Everybody!

Again, it's been awhile since I last updated and I feel horrible that it's taken me so long. Please understand that we haven't forgotten that all of you wonderful friends and family love us and want to know what the heck is going on...it's just that we have been so out of control busy, that I need to force myself to sit down and start typing. I have so much to say, that I need to be able to spend like 45 minutes on the update and frankly, I haven't had 45 minutes in I can't tell you how long.

Fear not faithful readers, as inventive and resourceful as I am, I have come up with a solution. I am going to just add to this one journal entry whenever I have a free moment or two and sooner or later...we'll all be caught up!
The downside is that chronologically (sp?) we will be out of whack, but since most of you have known me for quite some time, you should be used to my random thought process and be able to follow along nicely.

Any objections?????? Good, then we'll begin with our trip to Riley today...

November 14, 2005
We started out very early today with an MRI at 7:30 a.m. The purpose of this is so that the neurologist will have something nice to compare the not-so-nice seizure MRI with when we have our consult with her in January. The MRI went along without a hitch and Ryne the super-patient was as still as a statue without being sedated for almost an hour!!! They gave us the option of having him sedated with Versed (sp? again) but Ryne doesn't do so well with that as you might remember, so we decided to take our chances that he would hold still enough...and we were right...we knew he could and would! They let me go in with him and he wanted me to hold his hand...however, when they moved him into the tube I couldn't reach his hands, so I got the pleasure of holding his ADORABLE little feet for about an hour. I didn't mind and it put my little troopers mind at ease and that's what mattered most.

After the MRI it was on to clinic and blood draws (the second "poke" of the day) and a visit with our darling Dr. Holly! She nearly fell over when she saw how big he's gotten (he's grown a 1/2 inch taller and gained 3.5 lbs. in the 3 weeks since our last visit). His bloods were as perfect as can be...litterally and we were as happy and relieved as we've ever been. I'll say it again at the risk of boring you all with the repetition, WE LOVE LOVE LOVE DR. HOLLY! She and Ryne have the coolest bond and obviously we have great affection for this little (she's probably 5'4" in heels) Dr. who saved our little boy.

After our clinic visit it was down to neurology for an EEG. Ryne was such the trooper for all of that...lots and lots of electrodes (look for photos soon) and lots of holding still and all. Our MRI tech was awesome and she and Ryne had quite the time with the wires and taping and gooping of the hair...you get the idea. We'll know the for sure results of all of that testing in January as well...again we are looking for a comparable to the EEG we had done the day after the seizure.

A visit to the 5th floor followed all of that. We got to see Ellen (and pictures of the very beautiful and VERY big baby Mason) and Rosa and Telesa and Tawana and Cecil and the gang. I can't imagine ever losing touch with our nurses and the staff...we have such a special place in our hearts for all of them....

My timer (Ryne) is yelling from upstairs that he NEEDS to go to sleep, so I'll continue on this journey tomorrow.

Good night and thank you for praying for Ryne and for loving us...
We love you all -
g.

Sunday, October 16, 2005 8:52 PM CDT

Wow! It's been awhile since I updated and tonight's update will be short as I am positively exhausted. So much has happened since my last update that I don't even know where to begin.
Firstly Ryne is doing great! He looks healthy and is mostly back to being a normal 6 year old. He does have a tendancy to get tired quicker than he used to but we think that will change back to normal soon enough. He is doing very well in school and has just a ton of friends both new and old.
We have just returned from a FABULOUS week in Orlando doing the whole Disney/theme park tour courtesy of Indiana Children's Wish Fund and we had a ball. I'll give you details later along with photos.
We have had quite the football weekend...Notre Dame vs. USC yesterday (emotionally draining, but we couldn't be prouder of our Irish!) and Chicago Bears vs. Minnesota Vikings today in the windy city (always great fun with the Tafelski's).
I'm going to go get Ryne to sleep now but I'll fill in all the blanks tomorrow and make one LONG journal entry!

By the way Baby Donovan is off to Duke tomorrow and he sure could use every prayer www.caringbridge.org/in/babydonovan!

Thank you for your continued prayers - we still need them
And as always
We love you all
g.

Wednesday, September 14, 2005 2:31 PM CDT

Hey Everybody!

We have just returned from yet another successful (and long) trip to Riley. We had a consultation with the neurologist to get a feel for their comfort level in taking Ryne off the anti-siezure medication. We are scheduled for an EEG and an MRI in October so that they can compare the tests to the ones they took right after his seizure in January. It sounds as if he'll be on the medication for about another year. That's okay with us. I've said jokingly (although I really meant it) that I will go with him on his honeymoon to make sure that he takes his meds if it means that I'll never have to see him have another seizure. Yesterday the student neuro doc asked us to describe exactly what happened on the night of his seizure and it was all we could do to get through explaining it - seeing another one would put me right over the edge!

School is going exteremely well for Ryne and he is enjoying being back with his friends again. He is reading real books already and I can't believe that this is the same kid who was so sick at the beginning of the year. Speaking of that...I loaded some new photos so make sure you check it out. The first one is Chad's first day of school, the second one is Ryne's first day of school and the third one was taken in April 2005. You'll be amazed at his progress.

We are winding down the summer/beach season (how sad) and gearing up for football and fall! The days are getting shorter already and the leaves are starting to turn. I am hoping for a TOTALLY boring winter for all of us. No excitement necessary!

We are thankful for all of your continued prayers. We'll keep up our end of the deal and continue to stay well!

We love you all -
g

Monday, August 15, 2005 8:12 PM CDT

Hey Everybody!

Bet you thought we forgot all about you didn't you? Well, faithful readers, we have not...not even close. We have been extra busy getting ready for school to start and still managing to get in some serious beach time.

We made our monthly trip to Riley today and we think everything is okay. From an exterior standpoint, Ry is great. Looks great, has grown 2 3/4 inches since January 8th and is up to 64.1 lbs.!!!! Interior, we are hoping is fine, we left clinic today before his blood work results were back...the lab was totally backed up and we waited around for two hours and decided they could call us with the results later. It was so great to see Dr. Holly, like usual. I wish you all could see the look on her face when she sees Ry. I guess you will always run across doctors that you have a good repoire with and are comfortable with, but my friends, this one is something else! She walks into the room today (Ry was laying down on the table on his tummy because I was rubbing his back) goes straight to Ry and snuggles her face right onto his cheek and whispers "Hey...it's great to see you, I missed you!" to him. You can see him visibly relax when she comes around, he is safe in her care and we are so thankful for her. Then it's hugs all around!!! When I say over and over again how much we love our Riley family, I am serious when I tell you all that they are absolutely family to us. I know that they care for all of their patients and are very passionate about all of them, however, these two have that great connection that so rarely comes along. You can't begin to imagine how blessed we feel to have Ry in the care of someone who cares so much for him.

So we left the ROC and headed to Floor 5 to see the girls. What a great day, Dana was there! She is Ry's primary nurse and we grew very close to her over the first 5 months of the year. She is pregnant (due in early October) with a girl, whom I am fairly convinced WON'T be named George...don't think I didn't try (sigh...).
Anyway, she looks great and is not a huge pregnant lady, just a little bump, yet she is convinced she is a big as a house. Ellen was on too and looks wonderful! So we got to talk to them for a little while and then it was back on the road for the trip back home.

When we got home we cooked dinner to take over to my Dad and Pammie's because Pammie had knee surgery today and is busy convalescing. She did great and isn't even on crutches!

We are trying to get into some sort of school groove with bedtimes and wake times so I guess I'll cut this short for the evening. I'll try to load some new photos soon. Ry got a haircut two weeks ago (can you believe enough hair for a haircut???).

Thanks for the continued prayers...we still appreciate and need them.

We love you all -
g

****UPDATE***** August 17, 2005

Ry's blood test came back yesterday early afternoon and we got the two thumbs up again from the most fabulous Dr. Holly herself via telephone.

Unfortunately, our spirits were dampened by the news that Baby Donovan (remember I wrote about he and his family a lot) who was diagnosed with (A.L.L.) cancer at 6 weeks old has relapsed. I am just sick and am asking once again for the wonderful prayer chain to gear up and pray for this beautiful baby and his family. Donovans web site is www.caringbridge.org/in/babydonovan
Hope is so precious.

Where there is great love, there are always miracles.
We love you all -
g

Friday, July 22, 2005 6:10 PM CDT

Hi Everybody!

Things are still going very well for us here this summer. I can't believe it's almost the end of July already. We waited so long for the summer to get here and as usual it's flying right by. It's been so hot and sunny that our normal routine of the beaching on the weekends has been 10 times more fun and relaxing.

Since my last update Ryne has been having lots of fun with his Dad at the driving range, Chad goes along about every other trip as he is so busy working and making his fortune this summer. I am just working like usual and enjoying the same old everyday more than ever.

We made the monthly trip to Riley this past weekend. Ry had to start drinking contrast for a CT scan at 8:00 a.m. so we decided to stay in Indy Sunday night instead of getting up and leaving while it was still dark on Monday morning. The hotel had an outdoor pool so we spent Sunday afternoon swimming (the boys did most of the swimming and I read in the sun). We then had to convince Ryne that he needed to eat so after dinner at Max and Erma's we were back in the pool for round two. Derek and Ry decided that cannon balls were in order and proceeded to splash lots of water out of the pool with their jumps, there was only one other guy at the pool and he was just sitting out in the sun so they weren't too obnoxious. Neither Derek or I slept on Sunday night, partly from the pre-Riley nerves but mostly because there was a 63 pound 6 year old sideways in the bed between us. So there we were, up bright and early Monday looking like hell from no sleep and headed for what always turns into a long day at clinic. It all turned out great eventually, as The CT scan and the blood work were....PERFECT AGAIN!!!! As always it was great to see Dr.s Holly and Vic. Of course we couldn't leave without a trip up to the 5th floor so Ry could see "his girls". Ellen was on shift, back fresh from maternity leave (her beautiful son Mason was born on April 9th...remember that I guessed his birthdate!!!) It was an exhausting but great visit.

Chad is involved in the fair this week so I'm sure we'll be making the trek to Goshen a time or two. Thank God for Chad's step-mom, Lori----I sure wouldn't know what to do with all of this livestock and stuff! Can you just see it??? I hate petting zoo's, let alone giant pigs that outweigh me by hundreds of pounds and smell bad. EWWWW! I'm usually glad for Lori as a general rule but during Fair Week, she earns a special thanks from me!!!

As for the rest of us, you can find us any weekend with our toes in the sand on the shores of Lake Michigan.

Thanks for the continued prayers and support!

We love you all -
g

Friday, July 1, 2005 8:48 PM CDT

Happy July Everybody!!!

We are having our best summer ever - it's amazing how the outlook and priorities have changed around here!

There are lots of new photos again and we have been as busy as ever. I'll start where I last left off and give you all a rundown of our "events".

We are still in celebration mode for Ryne's birthday! We had a few parties and are planning at least one more...and if the mood strikes us, we may have two or three more! Ryne got some really great gifts for his birthday including a new set of golf clubs and an interactive R2D2 robot (that Mom had to buy on Ebay because they are no longer in production - yikes! the things I won't do for my boys). You see, Ryne's teacher Mrs. Cataldo brought in her son's robot for the kids to play with a few times before the end of school and it was so dang cool, Ry fell in love with the idea of having one of his own...now just tell me, how do you disappoint a 6 year old who's been through what ours has? I'll tell ya, you don't. So there I am like a woman posessed, bidding on ebay. We finally ended up with an R2 of our own from a wonderful lady in New Jersey. Guess what? Her birthday was the 25th also! She was thrilled, and so was Ry!

He and Chad have been miniature golfing twice and to the driving range who know's how many times.

We are still beaching it up at every resonable opportunity and having as much if not more fun than ever - some of us are having so much fun we can barely "stand" it right Derek? (Side note to Dr. Holly - the invitation still stands and honestly, it's been a long cold winter for all of us hasn't it? Pack up Mr. and Lucy and head North!)

Okay, now for Ryne's latest most coolest thing. When Ryne was really sick he and I were talking late one night in the hospital and he told me he still wanted to be a fireman. I think I told him that he was as brave as my firemen already...read back in the journal to confirm. As I'm sure some of you read in the guestbook, some of "my boys" (my firefighters at Clay) were moved to say the least. You need to understand that for the entire first year of Ryne's life, my boss allowed me to bring him to work with me everyday at the fire station. These guys are really attached to Ryne because of that. They were constantly carrying him around the station and playing with him when he was a baby, there are still safety plugs in all of the outlets in the offices today. When he got "mobile" in the walker, he would cruise from office to office to find the guys (usually with the Chief's glasses case all slobbered up in his little fist), on one occasion he even caused our fire marshall, Lane, (now retired) to have to run upstairs for a clean uniform after some excessive "airplane-ing" too soon after a bottle. When Lane retired he gave Ryne his badge - Ryne was 5 months old then- Lane pinned it to his Baby OshKosh overalls. One of my Battallion Chiefs shaved his head so Ryne wouldn't be bald all alone - do you see my point?
They love him, he love's them.
Well, Lt. Kwieran and my Fire Chief, after reading about Ryne still wanting to be a fireman, decided to get Ryne his own real helmet, shield and all. Lt. Kwieran gave Ry this great "speech" on Wednesday and presented him with his own helmet! A awesome cool moment in Ry's life and ours!
It just confirms (again) how lucky I feel to be where I am right now!

Okay, Ryne is yelling from upstairs that he needs some company....we are off to the sand again tomorrow for a long holiday weekend!

Be safe and enjoy your weekend!

We love you all -
g

thanks for the continued prayers!!!!!

P.S. for those of you that are worried that Ry only has one shirt (hmmmm Ashley???) it's just his FAVORITE because it's the Cubs...shaaaa
And I'm still upright...Derek, maybe not so much! (we love you ash!)

Tuesday, June 21, 2005 9:36 PM CDT

Hey Everybody!

Took me long enough but I FINALLY loaded some new photos of Ryne so make sure to check them out!

We are fresh from our trip to Riley yesterday where we had a great visit with Dr. Holly and we had blood work and an echocardiogram. We are so very happy to report that Dr. Holly says he and all of the tests and labs look "perfect"! You gotta love that Dr. Holly, she's a pretty smart cookie!

Ryne has been keeping busy swimming at Laurie's all summer during the week and swimming in Lake Michigan during the weekends with his beach buddies. We are having a ball watching him and catching up with our beach crew too! I can't believe how much hair Ryne has grown back. We can't even get the sunblock on his scalp anymore!!!!

Despite the fact that we lather him up with SPF 45 he is still sporting a great tan - as he was so eagerly comparing his arms with Dr. Holly's on Monday, it was really evident that he's got great color already. It's nice to see when you compare his complexion to what it was since the beginning of this year.

Only 3 more days untill Rynes 6th birthday too! He is truly excited and we have a couple of really slick birthday suprizes in store. In a few weeks we are going to have a belated mini golf birthday party for Ryne with his friends - so that ought to be great. We couldn't seem to squeeze it in before his birthday - so I guess he'll have to celebrate for about 3 weeks solid. I bet he won't object!

I'm worn out and need to put Ry to bed for the night so I will write more tomorrow.

Thanks for the continued prayers -

We love you all-
g

Tuesday, June 14, 2005 8:36 AM CDT

Hey Everybody!

I am so happy to report that we have actually been to the beach both of the last two weekends! Ryne is having a ball with his beach buddies and so are we. The weather here has been beautiful and outside of hauling the medicines with us in the cooler, things seem to be fairly back to normal.

Ryne is still working at regaining all of his energy, he seems to get tired just a little quicker than he used to, but hey, don't we all? It has been wonderful to see him splashing around and water fighting and throwing rocks into the lake and playing in the sand with the other kids. At the beginning of this journey, we were hoping that by next summer things would be okay and Ryne would be healthy again. As we learned more, we thought maybe by mid summer we could hit the beach, we wouldn't have guessed that the first weekend in June, he would be back in action!

I'll post some new photos sometime this week. You won't believe what a difference a month makes.

We go back to Riley on Monday for blood work and an echocardiogram. I'll let you all know how that goes. Keep up the prayers please...we need 'em!

We love you all-
g

Thursday, June 2, 2005 6:50 PM CDT

Hey Everybody!
I haven't updated in a while because things are so crazy around here. I am quickly remembering how chaotic our normal actually is.....frankly, I'll take chaos and a healthy child over what our first 5 months were anytime!!!

Ryne finished school on Friday (may 27th) and is enjoying his summer vacation back at his Laurie's with his "sisters" and everybody else in his 2nd family. He looks great and seems to be feeling very well. We are looking very forward to some quality time parked in our beach chairs with our wonderful friends and our toes in the sand as soon as the weather is cooperative on the weekends.

Chad's last day of school was today and he is officially home for the summer now too. I couldn't possibly be luckier - both blondies under one roof FINALLY! Chad picked Ryne up from Lauries early today and took him miniature golfing (they both love that so much) and Ry got a hole in one! I think a great day was had by all!

Ryne is very excited also that it is his birthday month! When we were at Riley he kept asking me how many more days 'till his birthday and I remember telling him it was about 150 days - that seems like 150 years ago now, we've been through a lot this year. At Ry's graduation Pastor Mielke said "this has been a kindergarten year that none of us will soon forget...." later Mrs. Price (the principal) and I were talking about it and she said that even though it was a toughie she felt it was one of the best years ever.

Everyone in the school came together, an example of unity like I've never seen. Words could never begin to express how I felt the day I walked into the school to see every single soul with a team Ewald shirt on...I was so grateful and so humbled and so proud to be Ryne's mom. We are truly blessed.

We truly are-
We still love you all -
g

P.S. prayers???? yep, we still need 'em! Thanks!

Wednesday, May 25, 2005 9:37 AM CDT

Good Morning Everyone!

We made our first monthly trip to Riley on Monday for Ryne's check-up and we are thrilled to announce that things look great. His blood work looked good and Dr. Holly said things looked "perfect"! We were relieved to hear those words coming from those lips! There is a great comfort in hearing one of our most trusted doctors tell us what we were hoping to hear.

Ryne did really well for the blood draw too. We put Emla on his skin an hour ahead of time to help numb it so that he wouldn't feel the poke. (We HATE pokes!) He cried when we peeled off the Tegaderm patch covering the Emla but he never felt the poke for the blood draw. So next time we will pack the Emla AND a bottle of adhesive remover.

We go back to Riley on June 20th and get another blood test as well as an EchoCardiogram. Dr. Holly says that sometimes the chemo is tough on the hearts of the little people (whew, she should see what it did to ours!) so they will do the "echo" to make sure there is no residual damage.

Have I mentioned to you all lately how very much we love our Doctors and Nurses at Riley? They are quite simply the best of the best! We will forever be grateful for what they have done and what they continue to do. Also, I got to see a picture of the oh-so-gorgeous "Wilma" (Dr. Holly's baby, who's real name is Lucie). She is perfect, beautiful skin and strawberry blonde/redish hair....just a pumpkin'.

Kindergarten graduation is Thursday night! We are feeling even more blessed than ever and I'll post new photos after Thursdays fun!

We appreciate all of your continued prayers-

We love you all -
g

Sunday, May 15, 2005 7:26 AM CDT

Good Morning Everybody!

It's odd to only be updating Ry's webpage once a week, but odd in a great way! Ryne is feeling very well and is mostly back to our normal child - he is growing lots of hair back and just really looks (at a glance) like a little boy with a really short haircut. Upon closer examination, his hair is coming in like new baby hair, it's sooooo soft. I probably touch his head every single time I am near him. He doesn't seem to mind. It's also nice to not have people giving us that sympathetic smile/frown that people do. They just look at Ryne and smile, probably thinking how handsome he is!! We love it!

Our days are very busy just getting back to normal and catching up the things that were put on the back burner for the first part of the year. I may actually be caught up enough to start the seventeen thousand thank you notes that I need to be sending. While we were in the hospital, I tried to stay caught up on sending them and I did a fair job...but once we got home and back to work and school and cooking dinners and going to the grocery store etc., I fell far behind. I'll get there sooner or later.

For now, know that all is well here. We go back to Riley on May 23rd for a clinic visit - blood tests and a check up. Ryne looks great and Derek and I feel loads better now that we are a little more rested.

Prayers are still very welcome and very much appreciated!

We love you all -
g

Sunday, May 8, 2005 7:57 PM CDT

Hi Everybody!

Can I just take a moment of your time to tell you all about my mostly awesome Mother's Day? True, I got my best present 2 weeks ago Tuesday when the scans came back clear of cancer, but humor me would ya?
Great!
Ryne made me a "pot of Easter lillies" made from his own handprints and a framed photo of himself for my fridge and the positively wonderful Chad got me a beautiful bracelet that has both he and Ryne's names on it. My boys are just the best!!

We went shopping today and Derek had some great shopping karma going on...he found everything he set out to find, it fit him perfectly and EVERYTHING was on sale. Why doesn't that ever happen to me?

After the fun of shopping we went to my Mom's for awhile and Ryne got to go fishing. He was thrilled and he caught 5 fish. Derek was right there to take them off the hook and a good time was had by all!

Happy Mother's Day to all of the wonderful Mommie's I know. I hope your day was as cool as mine!

Ryne is feeling fine - still a little tired though. He looks great and his hair is really coming back well. We are blessed!

We love you all-
g

Tuesday, May 3, 2005 9:23 PM CDT

Hi Everybody!

Today is officially day number 2 of our newfound NORMAL! We are enjoying ourselves immensely. Ryne is back at school full days including after school care for about an hour and a half. Derek is back at work full days and I am back at the fire station and the real estate office! This is really exciting for all of us and we are thankful to be back into our boring everyday!

There was an article in the paper today about one of Ryne's Riley 5th floor-mates; John Montgomery from Plymouth. He had a bone marrow transplant and appears to be doing very well! John was right next door to us for 3 of our first 5 weeks at Riley and had his transplant during Ryne's 3rd round of chemo. We are very happy for John and his family, if you get a chance to read the article, please do so. There's a picture of John and his little brother - the marrow donor and they both look great! Way to go men!

I'll update every few days now as I'm sure that what we do everyday is not only boring to us, you all may find it a virtual snooze-fest as well. A very wise woman once told us that our goal should be "BORING - no excitement is good!" - we fully believe her now and since she helped to save our little guy, I guess we better continue to take her advice...thanks Dr. Holly!

Have a nice night. Please toss a prayer Ryne's way whenever the urge strikes you.

We love you all-
g

Saturday, April 30, 2005 3:07 PM CDT

Hi Everyone!

As I type this, Ryne is in the middle of a wonderful afternoon nap. His benefit was last night and I think it wiped him out. I can name a number of other people it wiped out too... I can't imagine the amount of work that our friends and families put into making this benefit such a HUGE success.

It was so nice to see so many people come out to support Ryne and his victory over cancer. I have no idea how many people were there total but I'll bet that it was over 300. It was such a fun evening, great food and drinks, great music, great auction items and so many friends and family...it was overwhelming. Ry hung in there all night which suprized both Derek and I. He was one tired little man though and he slept in extra long this morning.

I can't even begin to thank everyone involved. There were just so many people. There was a core of our most faithful and closest "lovelies" who just went crazy with this idea and WOW!!! what an awesome evening! So to all of you.... a giant THANKS!!! Words are inadequate at a time like this. THANKS THANKS THANKS THANKS!!!!!!!!!! You guys all rock! Very good things will come of this, I promise you. What a way to celebrate an "all clear" from Riley.

We are all going to church this evening. I'm pretty excited about it as it is the first time we have been able to go together for a long time. We are quite simply exhausted both mentally and physically, and possibly are beginning to relax and realize that we CAN get back to normal now.

It's been a long time coming-

Keep up the prayers-
We love you all-
g

Thursday, April 28, 2005 5:23 PM CDT

Hi Everybody!

We are once again at home - this time to stay! We had a really busy 2 days at Riley and were happy to be home last night. Oddly enough, we thought we would be more relaxed than we are. I guess now we have to worry over the hole in Ry's chest (it's really small) where the central line used to be. It's just another place for something bad to be able to happen to him..ie. an infection. The likelihood of this is very small yet, here we are not yet able to relax. I'm sure that once that heals we'll be working on a new worry to occupy any spare moments we have, such as recurrance etc.

Don't get me wrong, we are not so worried that we are unable to function properly, it's just something that's there. Just there. All of the time.

Ryne had some issues yesterday with the anesthetic. He just couldn't shake it and was crying and halucinating and seeing double for quite awhile. To make it worse our Day Surgery nurse acted as if she couldn't give one hoot whether or not Ry was doing okay and/or ready to go home...she was definately ready for Ryne to go home and even told us "our time was up" after about 1 hour. I know she meant that we fulfilled our obligatory time that we needed to be under observation after surgery but her tone and demeanor said "seeee ya" in no uncertain terms. Derek and I were tense and nervous about Ryne's reaction (he couldn't even stand up on his own)and this nurse could not have cared less. I honestly think we were keeping her from leaving for lunch. So we got home and I "took a few moments to fill out the patient survey" just as they suggested and plunked it in the mailbox last night.

We are still in love with Riley Hospital and what they do there - make no mistake. I even wrote on our "survey" that this woman probably gave us "average care" but we were so used to the exemplary care of the 5th floor team of nurses and Oncologists and of Dr. Engum (Ry's surgeon) that "average" seemed very inferior. I suppose that nurse (we don't even know her name) is going to be sad that she gave us a survey sheet.

Even though the last day was not so good, overall we acomplished what we set out to do and that is "kick some cancer butt". Ryne looks great and is gaining energy every day.

We can still use the prayers - our new chant is No Recurrance - No Recurrance!!! But for now we are very happy to just have our cancer free little man back!

We love you all-
g

Tuesday, April 26, 2005 6:43 PM CDT

Good Evening Everybody!

The news we've been waiting for came today. After reading the scans Dr. Vik came in and told us that as of right now Ryne is CANCER FREE!!!! We are absolutely thrilled and after one more little hurdle tomorrow, we are going to try to resume normalcy.

Ryne has surgery tomorrow morning at 10:00 to remove his central line and that's our last hurdle!

We will be back at Riley every 4 weeks for check ups for the first year and then we go to an every three month schedule....but for right now things look GREAT!

The oncology staff all came in and Dr. Vik presented Ry with a certificate and a medal to recognise his bravery and acomplishment...then, are you all ready for this??? they all sang him a song the tune was "Happy Birthday" but the words went "Happy Off Treatment To You....."you get the idea. It was really sweet and it put a giant period at the end of this sentence. Ryne was really proud of himself but I think Derek and I were prouder.

We then visited the 5th floor to show Patty & Kelly (two of his wonderful nurses) his medal. It was nice to see them again and even nicer to know that at this point, we weren't up there to stay. Everyone was so happy to see Ryne feeling so much better - genuinely happy.There is something special about this hospital, it's like a family that you'd rather not be a part of but you are so thankful for your fellow family members that it takes away some of the "sting". It's like the saying "Life may not be the party we hoped for but while you're here you might as well dance!"

We all made some wishes in the fountains here at Riley today. I hope they all come true.

It's been a great day!

We need one more great (smooth) day tomorrow and we'll be on our way...home for good!

If there are any prayers left in you all, we still would appreciate any and all you can muster. Again, you may never know how much you all and the prayers have meant to us.

We love you all-
g

Monday, April 25, 2005 1:44 PM CDT

Hi Everybody!

We're off in just a few minutes - heading to Riley for scans and hopefully to remove Ry's central line. I'll try to update you all as we progress there, I think the hotel has an internet connection.

We had a good weekend and are very much looking forward to the successful completion of this trip. We hope that the scan shows no more cancer and that everything is as good as new.

Keep Ryne in your prayers, we're almost through. He's a tough little kid and we couldn't be prouder of him.

We love you all-
g

Saturday, April 23, 2005 4:22 PM CDT

Hi Everybody!

Well, Ryne made it through 2 full days of school with no problems. A little tired by the end of the day but other than that - flying colors! We are preparing him now for our trip to Riley on Monday. He has been really nervous about getting his central line out ever since he got it in. We don't know why he's so nervous, so we are telling him that it's no big deal and that he'll be sleeping for it and when he wakes up the line will be gone. Yet, he's still nervous, he said that last time he wasn't really sleeping because he remembers the doctors talking about his cancer.....hhmmm. We don't know for sure, so we are just trying to keep him excited about the freedom of no line.

He and Derek just left for church. I am dissapointed that I don't get to go with them this evening, I was asked to speak at Trininty (Ry's school) this evening at their annual school auction/fundraiser. I'm not sure a choked up Mommie is going to be the best choice for a speaker - but we'll have to see how that goes. I'll let you know.

Isn't this weather just about the craziest thing? Ryne was so sad that he had to wear his winter coat today. We thought for sure after this past week that the old winter coat was put away for the season.

I hope you all have a peaceful rest of the weekend. We are trying to get back into some sort of groove here just a baby step closer to normal...this will be a lot easier after this weeks trip to Riley.

Please keep up the prayers-
We love you all-
g

P.S. Just to let you all know, the "speaking engagement" seemed to be a success. What a wonderful school Ry goes to. Everyone is so supportive. I was a nervous wreck and have honestly not been in a place where I've ever felt so much love, support and acceptance. Wow! I am overwhelmed again, but this time for a good reason. Without a doubt, Ryne is in the BEST school around - it is a place of great wisdom, great respect, great love and even greater faith. We are humbled, blessed and on our knees in thanksgiving!

Thursday, April 21, 2005 10:02 AM CDT

Hi Everybody!

As I write this Ryne is actually at school - for a full day! Today is the second time I have been alone since January 8th (the first time was yesterday afternoon). How odd it is to have him ready to go back to school for a full day already. I am so proud of him.

He went to school yesterday too but only for the afternoon, I thought he would be too tired to stay for the whole day. I guess we'll see how today goes. It was so hard to leave him yesterday...it was like starting school all over again. I'm still a little nervous about him rough housing, I feel especially cautious because he still has his central line in and that's in a fairly serious location (his heart arteries) in terms of dislodging. I know he'll be fine though, his teachers and friends were overjoyed to see him and have him back at school.

The phone just rang and when I looked at the caller ID and it was Trinity. I was thinking, "okay, I hope he's just tired and not hurt or something...". It was Mrs. Cataldo calling to tell me he's doing just fine and that she can't even tell that he was ever sick. I love it!!!! I am forever thankful that we chose to send Ryne to Trinity, I can't imagine teachers at public school taking time to call a nervous Mom at home to put her mind at ease.

Mrs. Cataldo also told me there is going to be a drawing held and that three LUCKY students get to eat lunch with Ry in the gazebo!!! Oh how will we ever deal with all of this celebrity??? You know, I think he deserves it. This was not an easy path for any of us but Ryne just kept fighting, quietly.

We're almost done with this crazy nightmare, we're almost back to normal, it may take Derek and I longer than it does for Ryne to get back, but with time and the grace of God, we'll get there too...

Some day-
keep up the prayers please-
we love you all-
g

Tuesday, April 19, 2005 9:24 PM CDT

Hi Everybody!

Ryne had such a great day today - he and Derek stayed home while I went to work and they sure were busy! They went to the grocery store for some "supplies" (cupcakes, chocolate milk, potato chips and some beverages), then they went to get Ryne a new pair of shoes. They came home and took a short nap and went outside for most of the afternoon to play.

Derek is so great at playing with both of the boys. I'm always the dud Mom who has about a million things that need to be done in the house or in the flower beds or at my office....you get the idea. I think that's why I love to be at the beach so much, because I am forced to just relax or to play.

When I got home this evening they were both hiding to "suprise" me for my birthday. I had a cupcake with a candle (bet you can't guess what my wish was...)and presents and then we all went out to dinner (large Italian Margaritas were involved). Just a great day all around.

Ryne wants to go back to school tomorrow, so I'm going to take him for the afternoon. I'll just come home to work so if they need me to come get him, I can be there in mere seconds. I will be curious to see how his strength and energy hold up, he gets tired pretty fast these days. Wow, this is going to be a GIANT step for him.

When we were out for dinner tonight, it was odd for me to see people looking at Ryne. They had looks on their faces that ranged from curiosity to pity to sadness...I guess we're so used to seeing him (and lots of other kids) with no hair that it doesn't phase us anymore and this actually was his first time out in public since January. Nobody at Riley even looks twice as there are bald kids, and wheelchair kids, and birth defect kids, and burn kids, kids with IV's poles and kids with casts and bandages all over the place...after a very short period of time you get used to seeing just about everything in the hallways and the atrium and they just become plain old kids that just aren't as lucky as most. It's a good thing to be able to just be in a place where all differences are accepted no exception.

The world could learn a valuable lesson if everyone could just spend a week in the hallways of Riley Hospital.

Keep up the prayers please-
we love you all-
g

Monday, April 18, 2005 11:24 AM CDT

Hi Everyone!

Let it be recorded on this day in our history that I actually feel that the light at the end of the tunnel is NOT in fact an oncoming locomotive! We just left Memorial Hospital where they were thrilled to announce that Ry's counts are on their way up. AGC 2407!!

Up so much, in fact, that he can go outside with no mask!!!
I had him wear his mask until we got outside of the hospital building, then he took it off, both of his little arms shot up in the air and he said "I am a free man!"
A small victory to some...an enormous victory to us.

Ry was so excited that he wanted to go to his school right away and see his friends. So we stopped at home, picked up some things to take to the school and surprised his teacher and the class with a quick visit! The kids were jumping (litteraly) for joy, Mrs. Schneider came running around the counter with her arms open wide for a giant hug and Mrs. Price made it down the hallway in a flash! Mrs. Cataldo snuck in at least two or three hugs and an I love you for good measure. During all of the initial comotion and through my tears of joy I heard one little girl say "See Jesus answered my prayer!!!".

Olivia, honey, he answered mine too!

We love you all-
g

P.S. prayers still much needed and much appreciated!

Saturday, April 16, 2005 10:17 AM CDT

Good Morning Everyone!

I should say GREAT morning! Derek called me this morning and said Dr. Maher was letting us come home today! Derek stayed with Ry in the hospital last night and I came home to sleep - so what a nice wake up surprise that was! By the way, we were at Memorial so before you call Madison Center to have me admitted, know that coming home to sleep wasn't a three hour one way drive from Riley this time.

We sorta pled our case to Dr. Maher and asked if we could come home on antibiotics. Remember we've done it before. We can sit at home with zero AGC just as well as we can sit at the hospital. So here we are again. No imune system to speak of but no cooties growing in the blood cultures either. I told Dr. Maher that we've been home on just about everything you can imagine and have done very well, so I was hoping that he would just consider it. He must have thought we could handle it because they turfed the boys first thing this morning. Our feeling is that Ry is less likely to catch something in our house than he is on the general Ped's floor at the hospital.

It is a gorgeous day and Derek is planning on mowing very shortly and Ryne and I are going to hang out. Ry can't really go outside (AGC zero) and they are turning the fields around our subdivision today so it's probably best to keep him in and resting anyway. I hope you all have a great weekend.

Please keep the prayers coming-
We love you all-
g

Friday, April 15, 2005 10:29 AM CDT

Hi Everybody!

No update again...unfortunately, this time it was because things were not alright. We went (as expected) for blood and platelet transfusions yesterday because Ry's counts were absolutely in the dumper. Since his AGC is essentially zero, we have to watch closely for fevers. Well, last night Ry got a fever of 103.5 and we were off to the hosptial.

And that's where we sit now. We will be staying until his AGC is back up to at least 500 with no infection (so far there is no infection) or we identify the infection, treat it and get some AGC numbers up to 1000. Sigh... we only thought that the waiting was behind us.

I'll try to update again later tonight if there is any news worthy developments. Until then, I am one exhausted girl and Ryne and Derek aren't looking their most alert either.

Keep up the prayers, please.

We love you all-
g

Wednesday, April 13, 2005 8:39 PM CDT

Hi Everybody!

I know, I know...there was no update yesterday! Don't worry, we are still okay. I was completely exhausted last evening and was sound asleep by 9:30. It happens.

Ry is doing okay overall, he is extremely pale and is also complaining of a sore throat. Nurse Judy comes tomorrow for bloods so we'll see if we are going to Memorial on Friday or what. He is not running any sort of fever with this sore throat so we are on a watch and see and give Tylenol program for that.

Right now Derek is upstairs giving Ryne a bath. Ryne was outside playing and "helping" finish off our second (and last) load of rocks. He was pretty dirty and very very tired so it's bath and bed for Superboy tonight.

I hope he sleeps well. He needs the rest as his energy levels are so low right now. He's frustrated that he gets tired so easily, but we know that it goes with the program.

Better days are coming-please keep praying for him.

We love you all-
g

Monday, April 11, 2005 9:01 PM CDT

Hi Everybody!

We had a good day here at home again. Ryne was really tired today, he even took a nap at 11:00 this morning (he got up at 6). Nurse Judy came to get bloods and this afternoon when Riley called with his counts, we knew why he is so tired. His hemoglobin is down to 8 and his platelets are only 33,000. These numbers are pretty low and my guess is that after Thursdays blood work we will be at Memorial Friday for blood and platelet transfusions.

It's nice to be done with treatment but it still seems as though there is plenty to worry about - so it's not exactly stress free bliss around here. When platelets are that low there is a danger of bleeding - for instance a nose bleed may just not stop or a bonk on the knee from falling could bleed under his skin and cause some issues. I'm sure you get the idea. It's just one more thing to keep us from relaxing a little.

It was too windy to play outside today, so we are hoping that the wind dies down for tomorrow so we can get some fresh air and some resonable amounts of vitamin D. It was also dressing and caps change night tonight. We just finished that up and I am worn out. I'll be hitting the bed myself as soon as I get Ryne ready.

One cool thing that happened today is that Ryne got a letter and shirt from Mike Brey (Notre Dame Men's Head Basketball Coach) congratulating him on his couragous battle! Ryne thinks that's VERY cool, it put a smile on his pale little lips! Thanks Coach!

I'm signing off now - someone is calling me from way upstairs. Not "THE" Man Upstairs, the boy upstairs!

Keep up the prayers please, transfusions are a regular item on the agenda, but they still freak me out!

We love you all-
g

Sunday, April 10, 2005 9:22 PM CDT

Hi Everybody!

Wasn't it just gorgeous outside today? Ryne was at it again out playing with Blake and Gabe for quite awhile today. Derek was mowing the lawn and the boys were playing so I ran to the grocery store for my first actual grocery shopping (not just a day or two at a time) since January. I hate grocery shopping so you must know that this was one normal thing that I did not miss in the least.

When I came home the boys were playing on Blakes front porch so I walked over to make sure that Ry was doing okay. There they were - Blake (I think he turned 9 in February), Gabe who turned 6 in March and Ryne who will be 6 at the end of June sitting on a quilt playing Texas Hold 'Em poker for chips! Ry had his mask on, Gabe had his shoes off and Blake was in charge of running the automatic card shuffler. They were having a ball! I'm sure that Blake was frustrated trying to teach Gabe and Ry the game but he is such a great sport you sure couldn't tell that he was frustrated by looking at him.

By the time we decided that Ry needed a rest from playing he was so exhausted that he came home and slept for 3 hours. He also has tan lines on his head and neck where the bands from the mask were! Another successful day in the cul-de-sac. We sure are going to miss Blake when they move (Ed & Gina too!).

Ry just got out of the bathtub and we are trying to convince him that even though he had a long nap, he still needs to go to bed on time. Only two weeks to get back on some sort of schedule before we try to go back to school.

I hope you all enjoyed your weekend, hopefully this is a precursor to how nice this summer will be.

Please keep up the prayers for Ry!

We love you all-
g

P.S. Gabe is our next door neighbor and he and Ry have lots of fun together!

Saturday, April 9, 2005 8:39 PM CDT

Hi Everybody!

We had an extremely busy day today. Ryne started to feel better late this afternoon and decided that he was coming outside even if it meant that he was going to have to wear a mask! Derek and I had a truck load of rock delivered today and Ryne was determined that he was going to help shovel them into the wheelbarrow. I was a little nervous about the strain on his little central line but he understood what I meant when I told him if it was too much that he had to quit. So outside he comes in his pajama pants, sunglasses and a mask to help shovel. It wasn't long and he was tired and needing a break - but after his lemonade break he was back out at the rock pile with his shovel! The rocks finally got the best of him and he headed back in the house, those masks are really hot too!

Derek and I worked outside for about two hours and then our neighbors Ed & Gina started to head our direction. As we adults stood around talking, Ry appears at the living room window and says he wants to come outside again. He said he wanted to ride his bike! And he did! Form a quick mental picture with me if you will, pajama pants, flip flops, sunglasses, his hemet and the blue mask riding in the cul-de-sac. A fashion don't to most but I gotta tell ya, he's never looked better to me!
Before I knew it, Ryne and Blake (Ed & Gina's son) were riding bikes and then they played game boys on our front step for awhile and then.....played wiffle ball until it was dark! I was so happy to see Ryne with his good buddy Blake that I just about cried - and I can tell you that Ryne was ecstatic to be playing with someone besides Derek and I.

As if this day could get any better, my darling friend Penny (1/4 of the Vegas Fab. Four) comes over with dinner!
She is such a great cook and she made us spinach stuffed shells, garlic toast, salad and brownies!!! Not only did we have a great day, we had a wonderful dinner cooked by my wonderful partner in crime! I must be the luckiest girl in Indiana! Also, my Mom came by for a quick visit- I haven't seen her in what feels like FOREVER to me (we talk on the phone all the time, but it's not the same as an in person visit). I miss her a bunch so it was so good to get to SEE her instead of just hearing her.

I just got Ryne out of the bathtub and I'll bet he sleeps VERY well tonight. He is growing in loads of hair and it looks very dark...how odd will it be if we end up with a dark haired boy after all of this. Heck, we're just happy to have our boy after all he's been through. It doesn't matter what color his hair is (or if he even has any for that matter)!

I'm tired too. We moved lots of rocks and I already have a stiff back, I probabaly won't be so agile tomorrow. I'll cut this one short and say goodnight from a house full of happy and very grateful people.

Keep up the prayers please -
We love you all-
g

Friday, April 8, 2005 7:49 PM CDT

Hey Everyone!

We are home and Ryne is doing fairly well. He's a little nauseous and is really really tired but all in all doing well.

We finished chemo infusion yesterday at 4:00 in the afternoon. The spinal tap went as well as they go - actually better than the last three have gone but still not the thing you want to do any more than you absolutely have to. Ry told us at the beginning of his tap that he was going to stay awake the whole time (yikes) he never goes to sleep but the medication makes him forget what happened so I guess he thinks he was asleep. At any rate he was being really funny at first but as soon as the needle went in he cried and cried but seemed to snap out of it loads faster than usual. His hallucinations were more funny than scarey (I still hate it though) and we were back in his room before we knew it.

What's next, you may be asking? Well what we know so far is that on April 26 and 27 we will be back at Riley for a clinic visit, blood work, scans and the surgery to remove his central line. After that we will be going to Riley every 4 to 6 weeks for more blood work, follow up and scans. The statistics are in our favor - survival rate is 75 to 85 percent. The chance of relapse is real and would most likely happen within a year. Dr. Vic said that after that first year the chances of relapse are "significantly reduced". We like that!

Here is an interesting point of view for you - one of the Docs. on the Oncology team said to us that she doesn't really like stats because in regard to your own personal case your survival rate is either zero or 100. You are either cured or you are not cured. You are not 75% to 85% cured, you either are or you aren't. Period. That is so true and is something that I never thought of.

We are hopeful and prayerful that Ryne is a "100". If we could possibly ask any more from all of you - we would appreciate it if you all would continue to pray for total and permanent cure. This will be a little deamon that haunts the rest of our lives. They can say cure, but cannot promise forever. They can say relax but cannot fathom what it is like to face potentially losing your child. Our goal is to keep our fears in check and to take every day as the gift that it is.

Our goal is to make sure that the blondies (Chad and Ry) always understand that they are our world and our every breath.

Please continue the prayers, we know it's been a long road but we appreciate your company on the journey more than you may ever know.

We love you all-
g

Thursday, April 7, 2005 11:34 PM CDT

Hey Everybody!

The three best words of all
WE ARE DONE!!!!!

WOOOOOOOOOHOOOOOOOOO!

Have a great night! I'll give you the details tomorrow.

We'll need you all to continue the prayers for no relapse for at least 1 year (longer if you can). But for now know that our "INFUSION IS COMPLETE INDEED"

We love you all-
g

Wednesday, April 6, 2005 7:54 PM CDT

Hi Everyone!

Nurse Dana just came in and hung the last LAST bag of chemo! All we have to do is get through this bag - 24 hours-and endure one more spinal tap and we are DONE!!!!

It's so close now it feels unbelievable!

Ry had a good day today and even ate some Lucky Charms and some nachos and cheese from Taco Bell. We are encouraged by this, remember that eating and no barfing equals good. Most of the time for us just eating equals good! Ry did more laps today too. He also played Riley Bingo - a favorite among all of the kids here and then took a two hour nap. The chemo makes him tired and he is sometimes frustrated by his lack of energy. I keep telling him that this will pass and he seems content with that explanation.

By the way, Ryne got a Bingo fairly early on in the game and won a great Pink Flamingo Beanie Baby - he is thrilled!

Hopefully Derek will be able to sleep tonight at the hospital. I finally fell off to sleep last night around 3:15, it's not really easy to sleep here and for some reason my mind was just racing last night. After Ry's long nap yesterday he didn't nod off until almost 1:00 this morning...that's late!

So far all of our news is good, no cooties have shown themselves yet and the fevers are gone along with the bathroom issues. I won't say it, so as not to jinx us, but you know what I'm thinking.......

We are so close - don't stop praying now!
We love you all-
g

Tuesday, April 5, 2005 8:44 PM CDT

Hey Everybody!!

What a difference a day makes! I will go out on a limb here and declare Ryne downright PERKY today! We did so many laps around the 5th floor today that we were making the nurses dizzy. We don't know what has happened but we are glad it did. His color came back today around 10 a.m. and we spent a long time constructing a catapillar out of construction paper, when we got done with that Ryne crashed and slept for 3 hours!!!!! He is now up and we just came back from another round of laps.

So far no cooties have grown and we are extremely thankful for that. Sunday nights activities were far more than enough for me. We have been so fortunate in terms of the lack of barfing through all of this that when he started barfing on Sunday night along with everything else I thought we were really in for it this trip. Things have calmed considerably since then and we are so very thankful.

I just still can't believe that we are actually almost done with this. I am trying to figure out a way to thank our nurses and be able to express to them what their caring and friendship has meant to us. In my eyes these are some of the most incredible women I have ever met. Their dedication and commitment to excellence is not to be ignored. Riley is like no place that I have ever been in terms of care. Each and every nurse here have not only cared for my son, they have cared for all of us. When we were melting down they were right there, they have stayed past the end of their shifts to make sure that Ryne was okay when he had to go to ICU, they have found an answer to every single (extremely numerous) crazy question that I have come up with, they are kind, they are positive, they are honest and compassionate, they are the sliver of light you hope for on the initial dark days after diagnosis, they are more than competent...they are in a word Riley Nurses. They have brought sanity and peace to our shaken world and I have for them a profound respect and affection. How do you ever properly thank someone for this??????

How indeed?

Please keep up the great prayer work....it's working, I have proof.
We love you all-
g

Monday, April 4, 2005 7:48 PM CDT

Hey Everybody!

Well, we are still on fever watch as of this evening. The doctors ordered an IV antibiotic just in case but so far nothing has grown in his blood culture (no cooties). Ry felt pretty well today but is still flat. We slept very little last night as we were in the bathroom about every 40 minutes. He also has some pretty wicked tummy cramping (it even made him cry) so they started giving him morphine again every two hours along with these chemical hot packs to hold on his tummy.

We had a spa night tonight and he is currently in his basketball lounge pants and matching underwear with a Falcons Basketball shirt in anticipation of tonights big game. He was initially sharing a board (basketball pool) with me but when I had no hope left of winning he jumped ship to be with Derek or Chad - the only two contenders left in this particular pool. He looks great and we have noticed that he has loads of new hair growing. The chemicals will have him flat for another day or so and then we expect he will start to get some energy back. His Methatrexate level was fine today so we must have pee'd enough the other night...one more bridge crossed.

It was positively gorgeous here today and Derek went for a nice long run - they have a terrific river walk in Indy- and then around noon I headed out myself for a nice long walk in the sunshine and then a long hot shower at the hotel. Chad is on Spring Break this week and I'm sad that we don't get to spend any time with him. He is busy working and golfing but I really miss him a bunch, so do Ry and Derek. Hopefully he'll get to spend some time with us this weekend when we get home.

Dr. Vic came in to see us today and we were able to ask him some "what's next?" questions. The risk of recurrance is about 15 percent and will generally come back within the first year if it's going to. We will be back at Riley every 4 to 6 weeks for scans and blood tests and the like during that first year and you can bet that we'll be watching Ry like hawks.

I took a picture of Ry while he was sleeping last night. He just looks like a little fuzzy haired angel to me sometimes and in the middle of all of this chaos, he feels safe enough to sleep very soundly.

Again, I stand amazed.

Please keep up the prayers, we appreciate and need them more than you know.
We love you all-
g

Sunday, April 3, 2005 7:25 PM CDT

Hi Everybody!

COOTIE ALERT***COOTIE ALERT**** We are hoping that Ryne's great big 102.8 fever today is just from the chemo and not from some super cootie. Ryne slept lots of the day today as he had this giant fever brewing. He has since had some Tylenol and a blood draw to send to the lab to NOT grow some cooties we hope. We'll just have to wait and see, it usually takes 48 hours for the culture to grow something if there is actually something there.

After the Tylenol took affect he seemed to perk up a bit so we are thinking that the chemicals have a lot to do with the fever. Dana (our nurse) seems to think so too.

Other than lots of trips to the bathroom and some big old fever, it's been a quiet day. Bag #3 of ARA-C is running right now and we are laying low.

It was a beautiful day here in Indy and we are one day closer to being done....

Keep up the prayers please-
we love you all-
g

Saturday, April 2, 2005 7:35 PM CST

Hi Everybody!

We are having quite a day here at Riley. Ry got the Methatrexate finished last night. Because of the toxicity of the chemical you need to make sure that the patient is going to the bathroom about every 90 minutes so that the chemicals won't damage the kidneys...that means that we didn't sleep too much. It always takes a day or two to get used to being here again as it is, noises all night and nurses coming in and out and lights in the hallways, etc. you get the idea.

We also had another spinal tap this morning. These taps have gotten increasingly harder for me to take. Ryne is also finding them more difficult, he cries a lot and says it REALLY hurts and then he has a tendancy to hallucinate and I really hate that. Perhaps we were spoiled at his second spinal tap (rememeber, the first one was done while he was in surgery), the nurse practitioner who did his second one was so awesome that Ry didn't even flinch. The third one was a little tougher and these last two seemed pretty bad. These last two he has cried out and tried to sit up when they insert the needle (which is very large) and the whole thing seems to take forever to even get going much less get the procedure over with...sigh. I know that some of the kids have a super hard time with the spinal taps (particularly the older kids), Ryne just didn't start out having too tough a time and I was hoping against hope that his good fortune would continue. The whole process is entirely rotten--bad enough for adults but unbearable when it's happening to your child.

Verity just came in with the first of many bags of ARA-C (Cytarabine) that will run continuously through Thursday. If we can avoid any cooties and any diahrea and all of that type of fun, we should be in great shape and then just endure another spinal tap (aarrrrgggghhhhh!)and we're there!

I'm way tired tonight and am gonna call it a day before too long....Ry is in great spirits (although bored he says). Derek ran all over downtown this morning (litteraly went running) and I got out and walked campus for awhile. The sun was out and it felt great to get some exercise.

Let's hope for some great days to come, no fevers, no mouth sores, no barfing, no cooties and NO MORE CANCER!!!

Keep the prayers coming-
We love you all-
g

I'm glad that I get to sleep at the hotel tonight. I tried to sneak in a two o'clock nap today and Derek decided he would talk to me and make sure that I wasn't sleeping (nice of him don't you think?)and then Pope John Paul II passed on and we watched the news lots of the afternoon. I'm torn about the media coverage at the Vatican...but that's a subject for a whole different journal. Rest well.

Friday, April 1, 2005 6:48 PM CST

Hey Everyone!

We have arrived here at Riley safe and sound and are getting ready to start our LAST round of chemo. Verity (our nurse tonight) should be in here in a few minutes to start the last bag of High Dose Methatrexate that I hope will ever be infusing into my little boy. Following the Metatrexate, our schedule includes a spinal tap tomorrow morning (spinal fluid out and chemo in) and then the 6 day infusion of ARA-C (Cytarabine) begins....yuck, on the 7th day we plan to cap off our last lengthy stay here at Riley with another spinal tap (spinal fluid out and chemo in) bid our most excellent Riley family farewell and hit the road.

It's kind of sureal still, that this is what we are right now. Cancer is not WHO we are but it has sure done a number on what we are (or were). We have made some friends here that I know will always be a part of our lives. The cancer has changed a lot of things, there have been good things, sad things, hilarious things, terrifying things and things that will forever change our world. Not all of these changes are unwelcome either and above all we are so very thankful that we caught this in time.

Clinic days (or check-in days) are really long and really boring so we are fairly tired this evening. We'll be here all week doing what we can to kick this cancer in the seat.

Pray for a productive and UNEVENTFUL week please. As Dr. Holly says "boring is GOOD".

We love you all-
g

Thursday, March 31, 2005 9:10 PM CST

Hey Everybody!

The counts came back this morning and we haven't stopped smiling since....Ry was very busy making lots of white blood cells for us and we are leaving for Riley tomorrow morning!!!

He was so happy when the nurse called with the counts that he did a little victory lap around the basement! (truth is, I was right behind him) We are actually a little nervous as usual about going but the knowing that this is the last round is far more powerful than our nerves.

We got a GIANT poster from Trinity today signed by every one in the school and that seems like the perfect send off to keep Ryne's spirits up and his mind focused on the future and getting well enough to be back to his friends at Trinity.

Even though we have been mentally ready to go for at least a week, I am busy doing some 11th hour packing as usual so this won't be too long tonight. Just wanted to say THANK YOU all so much for praying without ceasing and for all your love and concern.
Please keep praying for Ry to beat this completely and forever.

I say it every day but I want you to know how much we really mean it-
We love you all-
g

Wednesday, March 30, 2005 6:36 PM CST

Hey Everybody!

Another beautiful day...two in a row...could Spring finally be here? We sure hope so!

Ryne spent some time playing outside late this afternoon. When Derek got home we headed right outside to swing and then Derek got Ryne to play wiffle ball for awhile. I can't tell you how great it was to see him running around the yard and playing again. Even though he wasn't able to play for too long it was sure great to see him out there laughing and running. He was chasing Derek around with the ball trying to tag him out and he fell, now keep in mind that this was not a major wipe out by any stretch but I still felt my heart skip a beat none the less. In true Ryne form, he got up and took off again right away.

It was really nice to be outside. I'm going to put him in the bathtub now so that he can be all clean snug and rest real well tonight (and make lots of cells) so that we are ready for nurse Judy tomorrow at 6:30 a.m.!

Please keep praying for good counts and we'll try to convince Ry to keep up his end of the deal here.

We love you all
g

Tuesday, March 29, 2005 7:58 PM CST

Hey Everybody!

Wow!!! What a beautiful day today! We are so thrilled to finally see some sign of Spring, we were happy all day!
Ryne even went outside for a little while - nothing too major seeing that he is still neutropenic AND wearing pajamas- just out on the front porch for a little while.

We did have the windows open off and on during the course of the day and the fresh air was marvelous. Adding to our great spirits today, Ryne and I finished our work in the basement and it is FABULOUSLY clean and mostly organized too!

Ry is feeling quite well and is working very hard to grow more "bone cells" for us. If his counts are good on Thursday we will leave for Riley on Friday morning. We are ready to go, packed and all so we say Bring It! We'll spend our spring break at Riley...no chance of seeing the beach this spring anyway.

Ryne is so excited about the end being in sight here, I know he is tired of just us all the time and who can blame him. He wants to see his friends at school and just be back to normal as much as we want that for him. He is just a brave boy with a wonderful attitude. He has never asked "why me?" and frankly, neither have Derek or I. We've pretty much said "Okay, it is what it is now lets get it fixed".

And fix it we will.

With a lot of help from our medical staff and prayers from our friends-
Keep 'em coming-
We love you all-
g

Monday, March 28, 2005 4:29 PM CST

Hi Everyone!

Well we got counts first thing this morning and the news, although brighter, is still not quite good enough to get us to Riley. We never did get the total exact counts but
Ry's AGC is at 800 (we need to be at 1000)
Hemoglobin is 10.8 good
Platelets are over 500,000
So it looks as if he is about to shoot that AGC number up really soon. What's next you ask? We have nurse Judy come over at 6:30 a.m. on Thursday and we wait again to see if we get to travel on Thursday or Friday or even wait until Monday. We don't want to wait until Monday if we don't have to. Even a two or three day wait is two or three days longer than we want this to go on.

Please understand that this is not simply a matter of our impatience. Yes, the cancer is technically gone from what we understand but the end of treatment makes that a little more official. I suppose that in my mind I have a hope that the end of treatment will bring us some sort of peace.

So here we will be, waiting and working. Please keep up the prayers. We need them still and appreciate them always.

We love you all-
g

Sunday, March 27, 2005 7:18 PM CST

Hi Everybody!

We had a nice relaxing Easter Sunday with both boys at home and nowhere to be for a change of pace! We hunted for eggs, ate chocolate for breakfast, cooked a huge polish lunch and then Ry and I napped while Derek watched basketball and Chad headed out for the various Grandparent stops. It was a very relaxing day.

At around 4:00 I headed for the office where I managed to get all the payroll and payroll taxes paid for the upcoming week (in hopes that we will be in Indy). I can't believe how much I got done in just 3 hours at the office, some days I amaze myself.

We are working this evening to make sure that we are ready to go back to Riley tomorrow, clothes packed, enough things to entertain ourselves for a week and the oh so important tote bag of goodies - like cheezits, licorice and my favorite coffee creamer. Just a few comforts of home!

Not too lengthy of an update tonight as we have lots to do yet and we have to be at Memorial at 7:45. We should know by 10 whether or not we are on the way to Riley. When they say jump - we say how high, how fast and how long would you like us to remain in the air. They are the boss of us - we are lucky to have them all.

Please pray that we have enough AGC to make the trip for our final round of chemo.
We love you all-
g

Saturday, March 26, 2005 7:51 PM CST

Hi Everybody!

We just got done coloring Easter eggs and eating pizza and I thought that I would update the page and call it a night. We are all looking forward to not having to do much tomorrow but hang out with all of us home for once.

Ry had a great day again today. He has been taking naps the past few days and we are hoping that he is napping because making new blood cells is such hard work. When he is not power napping he is running around like a normal little boy. We were teasing him today that he hasn't had actual clothes on since January 8th! Seriously, he has been in pajamas ever since he was diagnosed. He may have to ask Mrs. Price if he can have an exemption from the school uniforms and just finish out the year in his pajamas.

I'm going to try to load some new photos on the site so check it out if you get a chance.

I hope you all have a wonderful Easter. I always think of Easter as a time of fresh starts and a time to begin new things. It's a time to re-focus, make sure your heart is in the right place.

We are currently focusing on getting back to Riley and then setting our sights on the future...

I don't know how long it will take us to get there, but from where I sit the future looks brighter every minute.

Happy Easter-
We love you all-
g

Friday, March 25, 2005 7:46 PM CST

Hi Everybody!

Some days you get no updates and some days you get two...funny how things go sometimes huh?

We had an uneventful day today watching the snow this morning and just hanging out in the afternoon. I worked most of the day and finished up my quarterly reports that are due for the township and fire dept. then ran to the office this evening to pick up more things to do over the weekend. Ry just played and played, mostly with this cool foam ball squeeze gun that he got from one of Grammie Pammie's co-workers (Thanks Ms. Lies, that is one of the coolest things!)

We are looking forward to a peaceful weekend and Ry knows that his job is to be making some good "bone cells" as he calls them. He is feeling great and we are actually making great headway in the storage area of the basement too. All in all it has been a very productive week.

Also, when I got to my office this afternoon there was a bag of surprises from "Real Live Disney World". Marci must be home for the holiday weekend or something and we got some cool presents, like blue hot cocoa that we are going to make tomorrow after we color eggs! Thanks Marci!!
(Derek loves his shirt and I think my pen is awesome). It's super cool to have friends that work at Disney World!
Marci's dad is one of our Battallion Chiefs at Clay, but I gotta tell you, in Ryne's eyes, Marci's job is just as cool as her dad's!

Have a happy Saturday and keep praying please-
We love you all-
g

P.S. Congratulations Kaz and Susan!
Welcome To The World
Mitchell Oakley Kazmierzak
May the world be kind to you always!

Friday, March 25, 2005 6:38 AM CST

Good Morning Everyone!

No update last night as we had a spa/dressing change/central line caps change night and that takes me awhile as it is but then Ryne said his lines were uncomfortable so I changed the dressing again. Dressing changes are no small undertaking. It is a sterile process because his line is an access to arteries in his heart so all of the handwashing and gloving and masking and cleaning and taping are all done very carefully.

Our nurses at Riley can do a complete dressing change, caps and all in about 15-20 minutes max. It takes me about 15 to 20 minutes to just get all the stuff out and then another 10 minutes to get the old dressing off of Ryne's chest. The top dressing is about 4 X 4 inches and it seals on all four sides with adhesive, then there are two smaller gauze dressings underneath. Suffice it to say that I'm not the fastest, but you can bet that there's never a wrinkle in Ryne's dressing when I do it. Everything we do takes a little longer than it used to right now and that's okay, we aren't in any hurry anyway.

We are going to color eggs and have a movie night tonight. I know that movie night sounds like fun but unless I can convince Ry that I should go to Blockbuster, movie night will probably be....yep, more cartoons (aaarrrrggghhhh). I can't believe it's snowing again. When is this weather going to start to turn? The neighborhood Easter egg hunt will be pretty easy if all the eggs are on top of the snow!

Have a good day and a peaceful weekend-
We love you all-
g

Wednesday, March 23, 2005 8:46 PM CST

Hi Everybody!

The new counts are in and there is good news and bad news:

The good news is that we won't be in the hospital for Easter.

The bad news is that we won't be in the hospital for Easter.

White blood = .97 yikes! we need more infection fighters
Hemoglobin = 9.5 still good
Platelets = 410,000 lots and lots of platelets
Polys = 8for those of you keeping score at home, that's lower than Sundays counts and quite frankly WE NEED POLYS!
Monos = 52also lower than Sundays counts
AGC = 78 still totally in the "hopper"

We will be going to Memorial Monday morning at 7:45 to get blood drawn so the labs can be done really quickly. And if, by the grace of God, we actually have an AGC of 1000 or above we will leave for Riley immediately and begin Round 4.

I know you all are praying your selves silly, but if I could ask (again) please, please keep up the prayers. We really need these counts to "turn the corner" soon for lots of reasons. We would love for Ry to be well enough to finish out the school year with his friends and maybe even have a few weeks at school without lines sticking out of his chest....Ry would love it too.

I told one of my closest allies today that I would just like to stop being scared. Everyday since January 8th has been in one way or another a huge blessing and I am the first to acknowledge that, conversely, every day since January 8th has also been very scarey.

I cannot imagine a day in my life, and for the rest of my life that Ry's cancer won't consume a part of my thoughts, is it really gone?, will it come back?, am I paying close enough attention?...etc. It (the thoughts and nerves) will always be there. This cancer can have my thoughts and worry, but it can't have my son.

It can't. We have too many people praying for him.

Thank you for all your prayers - keep them coming.
We love you all-
g

Tuesday, March 22, 2005 9:10 PM CST

Hi Everybody!

It's 10:22 p.m. and I just got everyone settled down for the night and remembered that I didn't update the page yet..so here I am.

Chaddie came home tonight and after dinner he and I went out to go to Target and then to tan. Well, we ended up at Target, Linens-n-Things and Michaels and decided that we didn't feel like waiting in the line to tan. The line at Fun Tan in Granger was to the door and there were people waiting in lots of the chairs so we just brought our pale selves home and we'll tan some other day.

Speaking of pale people, Ry had another feeling great day today and the true test comes tomorrow morning at 7:30 when nurse Judy comes to draw bloods. We then find out if we are ready for round 4 yet....the suspense is nerve wracking.

Derek is the only tan one in our household right now.

It's late and we have to be up early tomorrow so I'll sign off for now.

Pray for good counts for Ryne please...we'd all love to be one step closer to having a cancer survivor than a cancer patient!

We love you all-
g

Monday, March 21, 2005 7:10 PM CST

Hi Everybody!

We've had a mostly uneventful day here at home. Ry worked on the computer for awhile while I cleaned some of the storage area. We are just waiting and waiting. I think these last two weeks at home have been harder on Derek and I than they have on Ry. He is having a blast being home and doing his thing during the day and we just want to get through this last round. He just goes with the flow.

Ry got to talk to his classmates on the phone again today. He was so excited to have them call...he misses his friends so much. He keeps asking me how many more days till this is over and he can go back to school. Instead of thinking of this as a life threatening illness, Ryne thinks it's merely an inconvenince, something keeping him from his normal routine and his friends at school. I wonder if that's why kids do so much better with cancer than adults? Perhaps, because they are too young to understand the severity of the disease. Whatever the reason, we are certainly glad for Ryne's attitude through all of this. He has been nothing but positive and nothing short of an inspiration to us.

We are attempting to get back into some normal bed times and wake up times (our cancer schedule has been stay up till 11 or 11:30 and sleep till 9). I probably won't be able to go to the firestation in my pajammas, so we better try to start adjusting our sleep patterns now. It's hard for me to believe that I used to get up at 5 every morning, that seems like another lifetime ago now.

Have a happy Tuesday and please keep praying for Ryne.

We love you all-
g

Sunday, March 20, 2005 6:32 PM CST

Hi Everybody!

Well the results are in and they are as follows:
Platelets = 273,000 very nice recovery there
Hemoglobin = 9.5 also a number that makes me smile
WBC (white blood) = .76 not good but climbing
Polys = 11hmmm, we need more polys than that
Monos = 60monos, we got monos, we got lots and lots of monos
AGC = 82 boo-hiss, remember the magic number? (hint: it's 1000)

All of these strange numbers add together to mean that we will not be making the trek to Riley tomorrow to start Round 4 as scheduled. We will have bloods drawn again on Wednesday and we may go on Thursday instead or perhaps we will have to wait until the following Monday (Dyngus Day).

The Hem/Onc Doctor on call said that things looked like they were about ready to swing up but that the tummy virus is probably slowing us down. (Sound like a familiar diagnosis????)

So we will wait and continue the fever watch and the isolation and the whole 9 yards. We are getting good at this now. Ryne told me today that "his cancer is almost over anyway". I think that's Ry-speak for we are in the home stretch.

Yep, the home-stretch. Extra emphasis on the "home" part this time. We have come full circle, at first all we really wanted was to be well enough to come home and now all we want is to be well enough to go back into the hospital! Insane indeed!

By the way, Aunt Donner called me today laughing hysterically about Ms. Brady and Mr. Bunch (God rest their souls), as it turns out,the Ms. Brady I wrote about was some relation to her niece. I don't think that Aunt Donner can form a just opinion on my sanity though as she is mostly in my same boat (the S.S. Crazy). That is why I love her though, we understand each other's sense of humor.

As usual, I'll keep you all posted on any new developments on the blood count front. I feel like "Blood Team 16"! I can start saying "we were the first to bring you the latest blood counts...blah,blah,blah".

Happy Monday tomorrow - I brought home loads of work and am also planning on cleaning out the storage area of our basement the next 3 days. If I don't update for a while, call Derek and make sure that I'm not burried under some fabulous thing that I couldn't live without but haven't used since we moved here that fell from the top shelf.

Please continue to pray for good health for Ryne. We appreciate it and need it!
We love you all-
g

Saturday, March 19, 2005 6:45 PM CST

Hi Everybody!
It's Saturday night at 7:56 and Ryne is doing well. I think that his counts are still way low though as he had a 2 1/2 hour nap this afternoon/evening. We have noticed that when his counts are down he takes a nice long afternoon nap. When his counts are up he is like the Energizer Bunny. He also isn't having much of an appetite here the last few days...maybe the tummy bug has something to do with that. We'll find out more tomorrow after we get his blood work back. Nurse Judy is coming between 7 and 8 a.m. to draw and take it to the Med Foundation for counts. Then Riley will call us and we'll know what we are doing next.

I went to church tonight and Derek stayed home with Ryne. I sat way over in the side pews so I wouldn't chance being around someone with cooties that I could bring home to Ryne. Actually, I sat by Chief and Mrs. Korpal and just said "hey, you aren't sick are you?" before I committed to the pew in front of them. People probably think I am insane. Anyways, Father Len said that after 10:30 mass tomorrow they will have the annointing of the sick...I was sitting there thinking that of all people, we should take Ryne to that. Then it hit me that since it's an annointing of the sick there will probably be sick people there and that's a risk that we cannot take. It's the type of irony that just sneaks up on you and makes you laugh.

Kinda like in the obituaries last week there was a Ms. Brady and a Mr. Bunch (God rest their souls) who's obituaries were one right after the other. True story! I laughed 'till I was crying...not because I was being disrespectful mind you....the irony was irresistable. Like when the lady who played the Wicked Witch of the West in the Wizzard of Oz died, she had in her obituary that she hoped someone (I think she meant the media) had the presence of mind to say "Ding Dong the Witch is Dead".
Laugh or cry take your pick.

Somedays for us it's either laugh or cry. We are laughing as much as possible and crying only when we just can't help it.

I won't even be mad if some of YOU are the people who think I am insane!!

Have a restful Sunday-
We love you all-
g

Friday, March 18, 2005 7:27 PM CST

Hey Everybody!

We are wrapping up a Friday here at home and watching very closely for fevers. We had another blood draw this morning and the results were Platelets = 152,000 good
Hemoglobin = 9.0 good
White Blood = .47 bad,bad
AGC = 9 very very bad

When his AGC is below 1000 that means he is neutropenic and that means he has virtually no immune system. Any little thing that he comes in contact with either from actually coming in contact with it himself or from one of us "bringing it home" he will probably catch and not be able to fight off. It's too scarey. Also his AGC must be at least 1000 and his platelets must be at least 100,000 to move forward with round four of chemo. At this point it doesn't look too much like we'll be at Riley for round four on schedule. We are getting another blood draw early Sunday morning to see if there is any improvement, but we are certainly not holding our breath.

I think that he has a stomach bug that he is trying desperately to fight off and that is holding up our white blood count a bit...you know, now that I am a nurse and very nearly a doctor, I feel as though my diagnosis is probably correct.

So here we will be, watching and waiting, waiting and watching. Pray for some good numbers for us and for this tummy bug to make a quick retreat. We could use a little good news, it's been a long week.

And wasn't it GREAT to see the sun today and have temperatures in the 50's???? (We know you all just had that a few weekends ago, but we were in the hospital and missed it.)

Have a beautiful weekend!
Keep up the prayers and know that we love you all-
g

P.S. If you have extra prayer time, my dear friend Liz lost her Dad to cancer yesterday. She and I have shared many stories about our Dad's, how much we adore them and how we couldn't imagine this world without them (typical Daddy's girl chat). I can't imagine the loss that she is feeling. Say an extra prayer for her tonight please.

Thursday, March 17, 2005 8:25 AM CST

Hey Everybody!
Happy St. Patrick's Day! We are celebrating here at home with a SpongeBob Marathon on Nickolodean (whoooohoooo). I am so tired of cartoons I could cry.

We ended up at Memorial yesterday for blood and platelets and that went really well. Ry played PlayStation and I read while all the infusing was happening. He seems to be doing better now and time will tell in terms of his counts.
It was just an emotionally exhausting two days. There are so many things to deal with that the smallest of variation from what we expect to happen is just crushing. I am trying to convince myself to snap out of it now and resume what we think to be the normal, but about every five minutes I'm feeling Ry's forehead and asking him how he's feeling.

I know that we are lucky that we have only had just this one speed bump here at home. I still realize that we are far more fortunate than some families that have a cancer kid. I still feel that we are blessed with our entire team at Riley. I am still grateful for everyone's support and prayers...with all that in mind, I guess one little speed bump isn't so bad after all. It is just what speed bumps are meant to be...a slow down, not a stop (and in my humble oppinion, a total annoyance).

Chaddie is coming home tonight and that will make all of us have a little more fun. Especially the little fuzzy haired blonde boy.

Please keep praying-
We love you all-
g

Tuesday, March 15, 2005 12:12 AM CST

Hey Everybody!

No update yesterday either - what's up with that? Well, we got a phone call last evening at around 6:30 from the Pediatric Hem/Onc on call doctor for Riley letting us know that Ry's blood counts were "critically low" and I spent lots of the rest of the evening trying to get a copy of his entire count sheet so that we could see what was going on. At 6:30 p.m. there aren't many answers to be had. After lots of phone calls we got a copy of his count sheet and had to call our home nurse for a re-draw this morning to make sure those numbers were correct.

They were correct and we need to go to Memorial tomorrow for blood and platelet transfusions - ewwww! That should fluff him back up and help his counts recover. The doctors think that the cooties prohibited our usual full steam ahead progress so now it looks like we may have to back his last chemo treatment up a week...RATS!!!!

I'm telling you that this is a roller coaster of proportions that I can't even grasp sometimes. It seems like right when we get comfortable with all of this - something rips the rug right out from underneath us again.

The proverbial end that was so close is now still in sight but got a little further away - it's depressing.

The good news is that Ryne is still acting great. Apparently he is a child who doesn't require much hemoglobin or something. The Unsinkable Molly Brown of blood counts if you will. Too bad Mommie isn't equally as unsinkable today.

Pray for good blood and platelets tomorrow and THANKS AGAIN to everyone who participated in the blood drive and to Battalion Chief Hummell who gives platelets regularly... you all are angels!

Keep up the prayers please -
we love you all-
g

Sunday, March 13, 2005 4:15 PM CST

Hey Everybody!

Sorry for not updating yesterday, I took the day off (not from everything, just from updating). We are still at home and doing very well. Ryne spent most of the weekend just playing and hanging out with us.

Monday is the end of the IV anitbiotics so we are looking forward to that. Monday night will be the first time since January 8th that Ryne will be able to go to bed and sleep "un-hooked from any IV's". That's exciting. As an added bonus, this means that I actually have the potential to sleep all night. It doesn't necessarily mean that it will happen, just that the potential is there. What actually happens remains to be seen.

It was so nice to see the sun today. Even though it's really cold, the sun is better than looking at the snow we've gotten recently. Doesn't seem possible that there are only 7 or 8 days till spring!! About the time the weather gets nice Ryne will be able to play outside without a mask. We are really excited about that too! Spring seems like the perfect time to start yet another new normal. We envision this new normal quite a lot like our old normal, with just a little more trepidation. I still wonder if we'll every really believe that the cancer is gone?

Sad news - our friends the Kajzers found out yesterday that their dog has lymphoma - they are foregoing the family vacation this year in order to have chemotherapy for Bacchus (their german shepherd). I didn't know that dogs could even get cancer, let alone chemotherapy. The bad news is that the chemo for Bacchus will only buy them another year together, Derek suggested that they take him to Riley. Seem to us like lymphoma doesn't stand a chance there. Too bad there isn't a Riley for pets.

Keep up the prayers please-
we love you all-
g

Friday, March 11, 2005 8:17 PM CST

Hey Everybody!
TGIF!!! No mouth sores and no fevers and it looks once again as if we may have dodged the mouth sores. Dr. Vic said that if Ry made it to the end of the week without them we should be in the clear!!! In the words of my friend Nancy...WOOOOOOOOOOOWEEEEEEEE! (we hope)

Remember the famous words from th O.J. Simpson trial "cautiously optomistic", those words have taken on a whole new premise with us.

Two really cool things happened today. The first thing was that this morning one of Ryne's teachers called and Ry got to talk on the phone to all his extended day kindergarten friends for a few minutes each. He was so happy to hear their voices and he actually said he couldn't wait to get back to school! Thanks Mrs. Cataldo -what a great idea.

The second cool thing of our day was that my dear friend Lisa and her daughter Bella cooked us some homemade cheese manicotti, with cheesy garlic bread and salad and Bella's world famous brownies for dessert and brought it over for our dinner. Lisa is a great friend and a great cook!
And Bella is not only a great baker - she is adorable and a fabulous artist. Yep, our friends are the best - hands down. Thanks LeBlanc's!!

Congratulations to Dr. Holly and Mr. Dr. Holly on the birth of their daughter Lucy Elizabeth (formerly known as Wilma) Monday March 7th. Derek was spot on with her birthdate...Dr. Holly will never hear the end of this I'm sure!

All in all it's just been a really quiet day here watching the snow on and off (and doing laundry). We actually welcome the boredom. I think we've had quite enough action for the first quarter of 2005 thank you!

Keep up the prayers please -
we love you all-
g

Thursday, March 10, 2005 2:00 PM CST

Hey Everybody!

Updating a little earlier than usual today as I know we are going to have a busy evening and I'm really tired from last night yet.

We were up more than usual last night, in addition to the 3 a.m. "hook-up" to the IV antibiotic, Ry had a bad dream and woke up crying around 2. About 4 or 5 hours of sleep per night catches up after a while.

On a happier note, we are having a good day at home. I got some work done and Ry and I played Nickolodean Trivia (which he promptly and swiftly kicked my butt at by the way) for an hour this afternoon. We also did more laundry and I actually sat down and read the paper!!!! I also (are you all sitting down?) added photos to the web site successfully!!!! Chek it out!!! We are on a roll.

The to do list actually looks managable from where I sit right now. Okay, managable might be a stretch but at least we are down to two pages of "to do". WOOOHOOOO!

I think nurse Judy is going to have to come back tomorrow to draw "levels" to make sure the Vancomyacin (sp?) is getting out of Ry's system properly - I guess it can damage your kidneys if it doesn't flush through properly. No wonder the cooties are on the run, they can't get any sleep here and the chemicals sound pretty scary too!

We are still hoping for no mouth sores and no fevers and hoping to stay home until the 21st. Ry seems to be holding up his end of the deal. He continues to amaze me!

Keep up the prayers please -
We love you all-
g

Wednesday, March 9, 2005 9:15 PM CST

Hi Everybody!

We are still home with no issues to speak of. The cooties are on the run (I think) and so far no fevers and no mouth sores. We are still chanting and maintaining the isolation bubble. I know it sounds harsh but it seems to be working so far and if it's not broke.....

I took Ry on a mini fieldtrip to the bank this morning (drive thru only) and we were listening to the B100 radiothon and he said "mom, do those kids talking have cancer like me? I said yes and he said "so there is a WHOLE hospital full of kids with cancer like me?" I said yes and he said "well, we need to call that phone number and give them money right now!" Then he said "Mom, are we rich?" and I told him we weren't rich but we weren't poor either so he said "well, if we ever get rich I want you to give the kids with cancer lots and lots of money". I promised him that if we ever get rich that is exactly what we would do. Then I told him we would call as soon as we got home and that is exactly what we did. He was so happy to be helping and being a "partner in hope". He was really excited to hear about the boy that also had to wear his mask outside, all of the things he was hearing sounded familiar to him - I'd give anything if they didn't.

He also helped me work today and after an hour of stuffing envelopes and putting return address stickers on he needed a nap. So he just crashed on the floor beside me, the laptop and the bank statements. He had a great nap and woke up in a really good mood. Then to top off his great mood, Chaddie came home and the world for Ry turned from great to FABULOUS!!!! Then he beat Chad in a game of video basketball and well, that was the icing on the chocolate cake of Ryne's day!!! We had a great night!

It's now 10:40 p.m. and I have got to get Ryne to bed, we have nurse Judy coming tomorrow morning so we need to get up a little earlier than usual.

Keep up the prayers please-
we love you all-
g

Tuesday, March 8, 2005 8:08 PM CST

Hey Everybody!

We are still at home and having some fun doing the things that we do at home - like laundry, open all the mail, laundry, laundry and more laundry. Ryne spent a fair amount of time this morning being sad and crying. We don't know why, maybe it's just a bad day for him. I think he is pretty tired - counts are down and that makes him irritable and very tired. He is still eating well for us and by this afternoon his mood was starting to change back to the usual perky, funny Ryne.

He played with this pyramid thing today that Ant Shel and Uncle Joe got him for Christmas a few years ago for about four hours. Making different shapes and towers. He really was focused on that one toy for almost all afternoon. It interests me how one thing can keep his attention for such a long time.

Derek went back to work today and I went to the firestation tonight after we ate dinner. I brought home work for tomorrow and Ryne will help me by sticking the return address labels on all of the bills for the fire department. Last time he helped he told me that he thought Timm (Chief Schabbel) should pay him $100 for his work. Sounds like he is "skilled labor".

I listened to the B100 St. Jude's radiothon on my way to and from work tonight and spent lots of time in the car crying. Last year when I listened, I was sad for the families. This year I am devastated and we are them.

One lady was saying that she couldn't wait to take her son outside without a mask on again and not be worried because his counts were down...last year I wouldn't have known what she meant. This year, we are her.

What a difference one year makes. Derek and I have been "Partners in Hope" (donating monthly to St. Jude's) for years. We also have donated money to Riley Hospital for years. Ironic, huh? You just never know. Both are great causes and both places treat regardless of ability to pay...both places are Godsends.

Tonight when you say your prayers for Ryne, remember to say a prayer for every family facing childhood cancer.

If your children are healthy, thank God for that too!

We love you all-
g

Monday, March 7, 2005 9:18 PM CST

Hey Everybody!

Well guess what? We came home last night! Dr. Vic sped up one of Ry's chemo IV's and we moved his spinal tap up to yesterday so we were free to go last night...and go we did. You don't have to tell us we can go home twice!

So we got home kinda late and we all slept in a little this morning (after getting up to hook up the IV anitbiotics at 3:15 a.m. and staying up to unhook them at 4:15 a.m.) Ry got some great sleep in his own bed and didn't even know that I hooked him up overnight.

Busy day trying to re-group at home and now we are all tired. Derek and I both were able to give blood today at the blood drive in Ry's honor at Cressy & Everett. So that was another great thing about coming home early!

Speaking of the blood drive, I just want to thank everyone that gave blood and those who tried but couldn't. You may not realize the impact you made today on a strangers life, but trust me when I tell you, today you made a difference. I was so honored to see so many people there giving blood, most of them I knew, but some of them were total strangers. Some of my friends were even giving knowing going in that it wouldn't be easy (Harold, Sandy and Sue come to mind right away on that) some gave blood for the first time and were extremely nervous but did it anyway (Joe Lacay and Norma)some of our "world travelers" tried to give but couldn't because of places they've been (Aunt Donner, Jillian and Carol Jax)suffice it to say there are a lot of stories to be told about blood drive day at Cressy and Everett. I even got to see the Medical Foundation personel try out their cold packs, barf pails and smelling salts today (you all know who you are). We had lenders and title companies and walk-ins and the "top brass" both from Cressy & Everett and Clay Fire and even a local radio celeb (thanks Hummer)! Really, with Sue and Penny at the helm, there was no detail left undone. Thanks so much.

Sue had eveyone sign a big plaque that says "Believe in Miracles" for Ryne - I can tell you that we do.

We have a miracle in our family room right now wearing Spiderman pajamas.

In our eyes you are all heroes - today and always!

Keep up the prayers please-
we love you all-
g

Sunday, March 6, 2005 8:23 PM CST

Good Evening Everybody!

We have officially identified the cooties as a strain of strep. Dr. Vic said it's the kind that is normaly in everybody's mouth but it doesn't cause any issues because everbody has the immune system to fight it....EVERYBODY does not include kids on chemo. So we are on IV antibiotics every 6 hours for the next ten days and we hope that it's little strep buns will be kicked!!

We also hope that it doesn't decide that Ry's mouth seems like a great place to party and invite friends that turn into mouth sores over for happy hour.

Speaking of happy hour Matt's Mom and I have yet to turn the ice machine into a margarita bar - Matt had a rough few days on floor five and as Nancy said she felt like a coyote and roadrunner cartoon "anvils were dropping out of the sky and landing on her head left and right this past week". It's odd how you'd think that we are cruising along just fine and chemo holds no surprises (the initial shock of cancer diagnosis should be our biggest shock) but I'll tell ya, just when we get comfortable with what's happening, the kid's have a knack of spinning our normal chemo days right out of control (not on purpose, it's all the chemicals) and it hits you like a knockout punch.
At any rate, our next trip to floor five will be complete with a blender - our last round of chemo deserves celebration!!

Ry is doing well again today and we also learned today that our last round of chemo will be Easter week. I assured Ry that the Easter bunny will still find him even if we are at Riley. I wonder if we could get a tape of the St. Hedwig choir and Father Len so Derek and I can have one of our favorite parts of Easter at Riley too?
Looks like we'll have to postpone our Dyngus Day festivities this year - Advil stock will surely plummet.

Ry also got a blood transfusion today along with a spinal tap. Poor kid, he doesn't remember the spinal taps when they are done but the unit of blood hanging from his IV pole freaked him out pretty well. To be totally honest it freaks me out too. I am one of the queasiest people I know when it comes to blood, other peoples blood freaks me out but my own is no big deal. It's not that I am worried about diseases either, just simply freaked out by blood.

So thank you very much to the person who donated the blood that Ry used today (and to the persons who donated the other 5 units he has received so far) - without you, my son would not be getting well! The blood drive at Cressy & Everett is tomorrow too - go give if you can make it.

They'll save you a seat and you could save someone's baby!
And don't forget...

EVERYBODY is SOMEBODY'S baby!

Keep up the prayers-
we love you all-
g

Saturday, March 5, 2005 6:18 PM CST

Hey Everyone!
We are still here in our home away from home and have had a nice day. We still don't have the word on what kind of cooties are growing in Ryne's blood but he is already on IV antibiotics that should squish whatever it is. Ryne had a good day today and is currently taking a nap. I'm a little worried that he won't sleep much tonight since he has been sleeping for about 2 hours now and it's 7:30 p.m. It's my night to stay at the hotel again so it would be nicer if the boys sleep as much as possible tonight at the hospital.

Guess what else??? I went OUT today! Yep, out to the mall! I power shopped for about an hour and a half at the mall in the big city. I hit the Franklin Store, Abercrombie & Fitch, White Barn Candle Co and Victoria's Secret. WOOOOHOOOOOO!!!! Shopping seems like a total luxury these days. The boys did fine without me and it really was nice to be somewhere besides Riley or the hotel or somewhere on the sidewalk in between for a change.

Ryne said twice today that he wanted to come home. So do we. I tell ya, we liked our home and our beds before but now we REALLY like our home and our beds. We'll be there before you know it - chanting, NO MOUTH SORES, NO FEVERS and NO COOTIES!!!!

Keep praying - we need it!
We love you all-
g

Friday, March 4, 2005 6:06 PM CST

Hey Everybody!

We are still here in Indy and the new news is that Ry's blood culture DID in fact grow some "bugs". At this point we don't know what kind of bugs and probably won't for another 24 to 48 hours. So now we are on anitbiotics and the total number of bags hanging from the pole is four. We have no more room to hang bags so if more are needed we have to get the "double wide" pump out again. So as it sits right now, we have unidentified cooties and no fever and the diarhea is coming to a stop (we think) and Ry just ate some Doritos and that is the only thing he has eaten since Wednesday.
Oh yeah, and his counts are diving.
We are full of great news here aren't we?

It's really not as bad as it sounds (I hope). Again, this is all part of the gig here in La Casa de Chemo. We are just taking it day by day and hoping for the best from each day we have.

Indy is hopping this weekend with lots of "chick basketball" stuff and some truck show. We heard that there are no hotel rooms available downtown and that it's a pretty crowded mess. It's pretty crowded here on the 5th floor too. Unfortunately, that's nothing new. This place is almost always full. There are kids in and out of here like a revolving door.

Derek and I ordered Chinese delivery tonight for dinner and we both agreed that it wasn't very good. Ry thought he would try some of the soup and then changed his mind when we got him a bowl. The smells of different foods seem to be making him sick and luckily enough he hasn't thrown up. (knock on wood).

By the way Dr. Holly's baby "Wilma" is still not out in the real world yet. She came in to hang out with us for awhile yesterday. She loves Ry to pieces and showed him some nice "tricks" to play on his nurses with syringes (without needles) and water and the occasional "hot pack". She is so great, we are very fortunate to have landed at Riley when we did. Our doctors and nurses are the best of the best! We haven't gotten to meet "Mr. Dr. Holly" yet but I'll bet he is as cool as she is - and Wilma is going to be one lucky little girl!

It's my night to stay at the hospital tonight. Last night I was sleeping by eleven and woke up at eight this morning (except the 1/2 hour I was up in the night with a nosebleed)
I slept like a brick! Hopefully Derek will sleep well tonight. We sure did get spoiled at home for those two weeks! Can't wait to come back!

Please keep up the prayers and ad our new "cooties" to the list of things we don't want. No Fevers, No Mouth Sores and No Cooties.

My Dad draws a great "cootie" and I'll bet that's what Ry's look like.

We love you all -
g

Thursday, March 3, 2005 4:19 PM CST

Hey Everybody!

Today has been full of ups and downs. Ry and I were up all night, he has stomach cramps and some diarhea and...sigh a big fat 101.5 fever. We are unclear as of yet the cause of the fever, they took blood for cultures today and so we are waiting for something to NOT grow. The doctors seem to be concerned about his tummy pain and we are probably gonna have another CT scan tomorrow - just to see what's up.

Of course my first thought was "do the doctors think that the tumor could be coming back?" It doesn't sound like that's what they think at all. I think that from now on, no matter what is wrong with Ryne, scraped knee, loose tooth, headache, I'll be worried that the tumor is coming back. We'll just have to wait and see if the scan shows anything or if it's simply a side effect of the GIANT and CONTINUOUS chemical parade. In the words of Grammie Pammie "we are not borrowing trouble". It could also be that the mucusitis (sp?) settled in his tummy at his surgery site according to the oncology team. None of these things sound like no big deal to me, but it all sounds like routine chemo stuff to them...another reason that here is better than anywhere else for us right now.

Rosa just came in to take Ry's temp again and he is back down to 99.5. Still warm but not scarey warm - that is good.

It is my turn to sleep at the hotel tonight - since I didn't sleep last night at all, I bet I have no problem sleeping there alone tonight. I hope that the boys get some sleep tonight - I do okay on little or no sleep but those boys.... they need their rest or it's a little bumpy the next day. We are going to have a spa night starting at 6:30 (so we are done in time for Survivor and the Apprentice).

It was sunny and beautiful here today and almost 40 degrees. Hope you all are shoveled out and starting to melt. Bathing suit season is just around the corner!!!

Keep up the prayers please...
We love you all-
g

Wednesday, March 2, 2005 5:22 PM CST

Hey Everybody!

Lots and lots of chemo today! Ry is a little "flat" right now and the docs say that's okay. We are on constant infusion until Sunday night - the chemical is called Cytarabine and some of the side effects include fever, mouth sores, diarrhea, painful red eyes and bone pain. Sounds like fun huh? We really want no mouth sores because that seems to spur on so many other small catastrophes that add up to one big old pain in the you know what, then again we also really want no fevers because that wins us another 7 to 10 days in the hospital. What we REALLY want is no more cancer though, so to get that, I guess we'll risk the former. Again, we are exercising our only option.

Last night when I was waiting for the shuttle to take me to the hotel (my night to sleep all night) I met a family in the atrium that had "the look". It was just like looking at Derek and I 8 weeks ago. They never said what the deal was, but I already knew. This morning they got on the elevator with me at the hotel and we started talking...they brought their son (13 years old)here yesterday for what they thought might be juvenille arthritis... he was dianosed with cancer and they formally awarded them the lukemia stamp this morning. They are from South Bend and now we have even more friends here on the 5th floor. The world is such a tiny little place after all. I visited them late this morning and took them "blue hope" bracelets. They are such nice people and a really close family and right now their world is upside down. Whew, our diagnosis seems like it was forever ago sometimes - but we have grown light years in the last 8 weeks!

I think Derek is going to go to Taco Bell for some dinner for us tonight. The doctors just told us that we will be here until Monday night at the earliest so we are formulating a plan to re-adjust our previous plan.

Hope you guys aren't too burried in the snow. The streets are clear but cold here in Indy!

Keep up the prayers please-
We love you all-
g

Tuesday, March 1, 2005 5:58 PM CST

Hey Everybody!

Looks like we got out of St. Joe County just in time. Sounds like you all are getting a little extra winter bliss. Well, I'll tell ya, here in the South it was cold but sunny today and we are doing very well so far with round three.

Ry had a big Methatrexate infusion last night and then a spinal tap first thing this morning with more chemo. We should be getting another bag of something really wonderful and really expensive here shortly and this stuff is a continuous infusion for the next 6 days - yep, 6 days! This is still so hard for me to grasp; so many chemicals and such a little boy. I know we are doing what we need to be doing...it's just so many chemicals.

Kelly (one of our nurses, whom we LOVE) is in here right now changing Ryne's dressing, she woke us up by singing to Ry this morning - she is a riot. Ry is telling her some dog pee stories (about Reggie) and it sounds like they are both giggling pretty hard. OH NO...spoke too soon, there is some new prep stuff in the dressing change kit and it has alchohol in it and Ry is crying cuz it stings like crazy. Kelly is feeling bad now and Ry has these huge tears. Who would make a dressing change kit and use alcohol for the thing to clean the hole in your chest with anyway????

We are doing better and Ry just said he's hungry again. This kid is eating like Chad-that is, ALL THE TIME. It's nice to see him with his weight back on. We figured he weighed 60 lbs. minus a 2 lb. tumor, he now weighs 58 so he has gained back all of his loss. He looks great and we are ecstatic.

In addition to being ecstatic we are very busy working hard to get Ryne well and praying that the chemicals are working so well that we are never long term guests of Riley's 5th floor ever again.

It would be nice if no child had to be.

Keep up the prayers please -
We love you all -
g

Monday, February 28, 2005 5:37 PM CST

Good Evening Everybody!
We have landed safely back at Riley for Round 3 and are waiting for the chemical parade to start. We are currently back in our first room with no roommate which has Ryne thrilled but we may not get to stay here very long if a kid comes in that is sick with an infection or needs to be in isolation, so we are hoping for the best and hoping we get to stay put.

Ry is kinda a private kid and let's face it, if you are having to pee in a portable urinal because you can't unplug the IV pole from the wall to get to the bathroom and they need to measure and test your urine anyway it's nice to do it in the privacy of your own room. Not to mention that sleeping in the same room with total strangers is a little unnerving for adults much less little kids.

The doctors say that Ryne looks great and that they were extremely happy with his progress the past two weeks at home. We are learning more and more about this particular round of chemo and getting comfortable with the program. We are going to continue to be overly cautious when we get home again because we honestly feel like that has something to do with our "beating the odds" this time and not fevering and being re-admitted. Time will tell but we are most unwilling to take any unnecessary risks.

It's a dreary snowy night here in Indy and they are anticipating about 2 inches of blowing snow by tomorrow. The city will probably shut down - but, we aren't going anywhere anyway.

Keep up the prayers please-
We love you all-
g

Sunday, February 27, 2005 8:15 PM CST

Hey Everybody!

We made it!!!! 2 weeks at home against the odds and we are feeling very fortunate! We go back tomorrow for round three and are hoping for the best. This series of chemicals is called CYM1 and so we are venturing into new territory in our fight.

As I write this Ryne is next to me on the family room floor playing with Legos and watching the Oscars with one sock off and one sock on. He looks great and if you can see past the new hairdo (or lack of hairdo) and the very white skin and the Pediatric IV backpack and tube sticking out from under his shirt, he seems completely back to normal. He is just our same great little guy who wants to play and watch cartoons and sit right in the center of the family room floor so as not to miss anything going on on the first floor of the house. It amazes me what he has been through and has been able to bounce back. He quite simply amazes me.

These last two weeks have been so many things; hectic, fun, quiet, inspiring, kinda tired, hopeful, and nervous. Ryne and I had time to dance in the kitchen two days, I was trying to teach him to slow dance but he was more interested in "booty shakin'" so we changed our music and had some fun. Ry and Derek played basketball in the basement. Chad and Ry played some video games and played "Don't Wake Daddy" (it's a board game thing) for like two hours. We really enjoyed our time here and actually got some things done too.

Now it's back to the 5th floor and all of our fabulous nurses and doctors - we are rested (well, Ry is anyway) and ready to take the next step. We're halfway there, we're determined to beat this and we're confident that we are going to the best place in the world for treatment of Childhood Cancer.

And we still feel blessed!

Please keep praying for Ry -
We love you all-
g

Friday, February 25, 2005 8:39 PM CST

Hey Everybody!
We had another successful day here at home. Ry even played some basketball in the basement with Derek this evening. Mitch (Mutch) came over and got our new internet stuff all hooked up so now we are high speed and wireless. THANKS MUTCH!!!!! Now Ryne can play games in the family room and I won't have to run up and down the stairs every 5 seconds to see what he needs me to fix on the computer next!!!

He is really doing well right now and it makes me a little sad that we have to go back to Riley already next week. But, it's one of those things, the sooner we go the closer we are to completing "therapy".

Going to cut it short for tonight. We were up really early and I'm pretty tired.

HAPPY 27th BIRTHDAY GRANDMA JUDY!!!! WE LOVE YOU TOO MUCH!

Please keep up the prayers, it's back into new and uncharted waters (for us anyway) on Monday!
We love you all-
g

Thursday, February 24, 2005 8:52 PM CST

Hey Everybody!
Whew...what a day!
We were very busy and quite active for not sleeping much last night. Ryne got up around 8:15 and we did the usual waiting for his "hook up" pump to beep and let us know that his infusion was complete and took medicines, then nurse Judy came and took bloods then we ate some breakfast, I had to call the insurance company and after that we made cookies. We made minimal mess and Ryne had a great time eating cookie dough.

I'm not one of the Mom's that says "Not too much cookie dough, you'll get worms or salmonela or be struck blind etc." In fact, I've been known to whip up a batch of cookies that never get to the cookie stage at all! Good thing that whole "worm" story from when I was a kid turned out to be an urban legend!!! That Grandma Judy...she could sure come up with some good ones. By the way tomorrow is Grandma Judy's birthday!!! WOOOHOOOO!
Ryne said she is gonna be 27! That makes me a lot younger too, so we're just going to go with that.

Ryne is doing very well and we are gearing up to go back to Riley. It's like moving to Indy for a week at a time. Unfortunately we are already used to it. We can't believe it's almost March! Our year has been so unusual, we have actually been home less than 25 days of 2005! I noticed that it was still fairly light out at 6:45 this evening and I am encouraged that summer is on it's way.

Gonna run for now....watch some ER with Ry and then get him to bed!

Keep up the prayers, please.
We love you all-
g

Wednesday, February 23, 2005 7:26 PM CST

Hey Everybody!
Well it's Wednesday night and we are still here at home and living it up!!!
We had a great day again today. Well, I had a great day anyway, we cleaned Ryne's closet and boxed up lots of "baby toys" for a garage sale this spring and that made me feel great (in case you don't know me that well, clutter is a source of insanity for me - I just can't deal). I also had one hour today when Ryne was watching a movie upstairs and I was downstairs getting my 2004 tax speadsheet finished for our accountant and....are you sitting down?....I GOT TO WATCH DR. PHIL! A great day indeed! The only bummer is that the Dr. Phil is a 2 parter so I've gotta figure out some plan for tomorrow. I have to be at the firestation at 3 to work on payroll and there is a TV on my desk....hmmm..
It's the little things in life that truly make you happy!

Ryne is doing so well. He is in such great spirits and is just loving being home all day with me and with Derek, when I go in to work "early". He was having fun cleaning out his old toys today and we are going to make chocolate chip cookies tomorrow morning after we get "un-hooked" and nurse Judy comes.

When he was coming back around in the hospital one of the things he asked me in the middle of the night was if we could make chocolate chip cookies when we get home. Looking back on that time, I remember thinking, "we'll make cookies every day if I can just get the "old" you to come back to us". The first few weeks in the hospital were a scarey and desperate time. It still seems like this is all a dream sometimes.

We are doing well though and Ryne seems to be stronger everyday. Just in time to knock him back down with Round 3!

Also, Ryne's friend from Riley, Matt, is having a rough go of it with his cancer here lately and he and his family have really been a source of strength for us since Ryne's diagnosis. I bet he'd like to get a line of encouragement from you all. His web address is www.caringbridge.org/in/matthewk. This kid is a real fighter and his fam. is awesome!!

Have a happy Thursday, we'll be making cookies!
Keep up the prayers-
We love you all-
g

Tuesday, February 22, 2005 8:45 AM CST

Hi Everybody!
Oops...no update yesterday. The days sometimes have a tendancy to just get away from me. We had a great day yesterday after not sleeping much on Sunday night. Ryne was ultra restless and that means I wasn't sleeping either. I then got this great idea to move Ryne and his IV backpack to our bed (so Derek could share in the fun too) no, seriously thinking that Ryne would have more room to flip around - it seemed to work and we slept for about 2 hours!!!!

We got up and got all of the medicines taken and "unhooked" at around 9:00 a.m. just in time for nurse Judy to come and change Rynes dressing, caps and draw bloods. I am anxiously awaiting the blood counts today and am hopeful that his AGC is on it's way back up. I'm trying to be not heart-set on better counts because when they aren't better or when they start to bottom out I get sad for some reason. The dumb thing is that I know that if his counts didn't bottom out, that the chemo isn't working - but it still makes me sad that he is so vulnerable. There is no Social Work Team here at my house, so you all get to hear about my temporary depressions. By the way not a tear during the dressing change....Nurse Judy said she's convinced it's the rubbing alcohol followed by the skin prep (which did I mention, was my invention???)

Well I've got a lot of things to try to get done today...so I'll get going for now and will update again tonight.

Take care
Keep praying, please.
We love you all-
g

Sunday, February 20, 2005 8:47 PM CST

Hey Everybody!
It's 10:00 on Sunday night and we are still home and doing very well. Ryne took a 4 hour nap today so it looks like I'll be up for awhile yet tonight. He had a great day just playing and resting and napping and doing some homework. All this while grazing different things to eat all day. Last night for dinner he ate 9 pieces of garlic toast (without the crust please). He is eating yogurt and cheeze and Cheezits and great stuff like that. I won't win the award for the Mom with the best nutrition ideas but that's okay with me (I wasn't going to win that one before Ryne got sick).

Derek watched the race today (he says "Boo-Hiss Jeff Gordon") while Ryne napped, I went to the mall, then to the office and then to church this evening. I went to St. Joe South Bend and I gotta tell you I was about out of my mind with a packed church and the person in front, in back and to the right of me coughing through mass. I excused myself from shaking hands during the sign of peace (was thinking if I could pull off a "Bob Dole" and just hold a pen to keep people from trying to shake my hand) and left church promptly after communion and went to my car and loaded on the hand sanitizer. The excessive hand washing is not a new habit for me but the paranoia about crowds of people with colds is. YIKES!!!!!

It was just a quiet day here and that's EXACTLY what we're after. We had more than our fair share of the excitement during the last 3 weeks of January.

I'll talk to you all tomorrow - keep praying.

We love you all-
g

Saturday, February 19, 2005 7:21 PM CST

Hey Everybody!
Another good day here at home and we are really feeling blessed at this point! Ry started a small fever around 3:00 this afternoon but took a nap and woke up back to his normal 97.5!!!!! Derek and I were like, "wheeeeewwww!!" we are realistic enough to know that he could get another one tomorrow that doesn't go away - but for now we'll take it!

Ryne is still working very hard on his homework - he wants me to take it to Mrs. Veen to get it graded before we go back to Riley, so he is very focused and is doing 2 or 3 pages a day for me. He's so cute!

I bought the Shark Tale movie for Ryne yesterday and he has watched it no less than 8 times since yesterday evening. It's interesting to me that little kids will watch the same movie over and over. When Chad was little (like 2) we watched Bambi every night for over a year - we both knew the movie lines by heart and he just kept wanting to watch it. There must be lots of comfort in routine and familiarity for my kids-probably all kids.

I went to the office today for awhile and got loads of stuff done - believe it or not, I'm nearly caught up! It was really quiet there and I didn't bother answering the phone (except when the guys were out on a call) and I was amazed at how much I got done in 3 hours. Derek is mostly caught up at his office too so that is a big relief.

Well, I gotta get the #2 "hook-up" ready, it's almost that time!

Have a great Sunday! Derek will be glued to the set for the Daytona 500, Ryne will probably be watching Shark Tale and I might just take a nap (okay, probably not).

Keep praying -
We love you all-
g.

Friday, February 18, 2005 9:13 PM CST

Hey Everybody!

Well we are still here on day 6 and that beats my initial goal of 5 days at home so we are pretty happy. Riley called me today with Ryne's blood counts and they are way down again (sigh...) his AGC was 1100 yesterday when they did bloods. They won't do them again until Monday so we are "in the bubble" until they start to come back up. Now the NO FEVERS, NO MOUTH SORES chant is of utmost importance. His hemoglobin was also right on the edge (8.5) so chances are he'll need another transfusion (sigh again...). Rest assured that this is all normal in the course of childhood cancer and that the doctors and nurses act as if it's just another day.

The good news is that Ryne is still in great spirits. He was quieter today but that is to be expected with low hemoglobin - less energy etc. The cravings continue though and he managed to eat a half can of pizza Pringles, about 15 Hershey Kisses, 2 bowls of vanilla yogurt, the last hog cookie and a bowl of EasyMac then washed it all down with Capri Sun Sport and white milk.

We also had spa day today and he looks great! I wonder if Dr. Holly knows that our spa up North is easier to get into than our spa at Riley? I'll bet she could really use a good spa day about now - Wilma (her baby) is due to arrive on March 1st.

Chaddie's basketball team won their last home game tonight! I miss watching his games in person. Now I just rely on his post-game play by play. He is such a great kid...what other 16 year old boy with his own car would tell his friends to be quiet so he can tell me about the game via cell phone from the school hallway??? I'll answer that...not very many. Derek and I and Butch and Lori are pretty lucky parents...maybe that's the secret it takes 4 adults to raise one good 16 year old young man.

I've said it before and I'll say it again...I am blessed with two of the best boys on earth!

I'm exhausted (again) so I'll sign off for now and write again tomorrow.

Keep the prayers coming Ryne's way! We couldn't do this without all of you and your prayers.

We love you all-
g.

Thursday, February 17, 2005 10:14 PM CST

Hey Everybody!
It's 11:30 p.m. and right now is the first time I've had a chance to sit down. We are just busy all the time here anymore. Mondays and Thursdays are Nurse Judy (no, not my Mom, that's Grandma Judy) days and she comes to take bloods and to change Ry's dressing on his Central Line and caps. Today was the first day that he didn't even so much as shed a tear during the dressing change. I tried to convince him that it was because he let me change it on Monday and I did such a good job that the tape didn't hurt coming off today - he wasn't buying it but Nurse Judy asked me what I did specifically and we are trying it again to see if it really was my great nursing skills at work!

Ry had a good day again today and he is still eating well (quantity not quality) and is playing quietly. He has also become an expert PlayStation 2 Backyard Baseball player and beat the computer 25 to 2 yesterday and actually beat Derek this afternoon. Beating Derek at a video game is no small feat either - he gets lots of practice. We are hanging in here at home and keeping an eye on the weather forcast for the weekend. Hopefully, we won't have to go anywhere and we can just wait this dang snow out.

That's about it for now - I'm tired and want to check on another patient/friend at Riley before I turn in for the 2 or so hours that we get to sleep at a time (the bonus is when it's actually in our bed instead of Ry's).

Don't forget the blood drive is March 7th at Cressy & Everett. The posters got done today and they are adorable! Call Penny at 233-6141 to reserve your spot. There will be plenty of cookies!!!!!!

Keep up the prayers please -
We love you all
g

P.S. Congrats to Danny and Chris - they are getting married tomorrow (Feb. 18th). Sorry we won't be able to attend - we'll just have more reason to celebrate when we get back to our regularly scheduled programs!!!! We love you guys! Derek, George, Chad and Ryne Nolan

Wednesday, February 16, 2005 7:14 PM CST

Hey Everybody!
As I write this it is about 8:30 p.m. on Wednesday night and Ryne is still going strong. He is currently working on his "homework" that I picked up at the school today. He sent me to Trinity with his Valentine's for his class and they loaded me up with plenty of Valentine's for him along with some homework. He was really excited to see his familiar papers and is now working on the new letters of the last 6 weeks. You know, I also picked up some of the papers he worked on the week before we went to Riley. Not only does he not remember those particular papers, he doesn't think he went to school after Christmas break. So all total he is missing about 3 1/2 weeks - kinda scarey.

His Grandpa (my Dad) came over today at lunch time and dropped of 25 Wendy's chicken nuggets and a box of cookies that Ry and Grandpa call "hog cookies" (they are these huge cookies with tons of frosting and we've called them hog cookies since Ryne was 2). Needless to say Ryne was pretty happy to see his Grandpa!

Derek worked a half day today (and tomorrow) so that I could go to the fire station and get a handle on my office. It's nice to be able to work from home but there are just some things that can't be done from here. We are trying to keep everything as caught up as we can - keeping in mind that if Ry gets a fever we're most likely outa here right away. Time management skills that I learned years ago and have chosen to ignore are flooding back to me!

Just a few more quick things - Ryne told me the other day that he wanted to see other people. When I asked him what he meant he said "you know other people...people that I like, like my friends". I was just about on the floor at this point and I asked him if he was tired of just Daddy and I everyday - he promptly said yes. You can hardly blame the kid, 6 weeks of being stared at by the same 2 people 24/7 is bound to get old. It was just his choice of words, I asked him if he was "breaking up with us" and he said "no, he just thought other people would be more fun". I remember saying just about those same words to this guy I knew about 18 years ago - Taco Bell and now this...yep, he's my kid!

Also, at school today, Mrs. Cataldo asked me to look at Ryne's hook when I left (the hook he hangs his coat on). One of his little buddies at school cut the word Jesus out of paper and colored it and layed it on the floor under Ryne's hook. The teachers have since taped it to the wall. You know, kids are so simple and yet so complex. This little girl knows 2 things for sure, her friend is sick and she feels helpless and even if she can't fix it personally, she knows who can. You just don't get that kind of faith in every Kindergarten class.

That's too bad!

Keep Up the prayers please - we know they are working!
We love you all-
g

Tuesday, February 15, 2005 1:51 PM CST

Hey Everybody!
Well we are still at home and doing well. Ryne and I went on a field trip yesterday to Wendy's for some chicken nuggets around lunchtime. We just went to the drive thru and brought his lunch back home to eat, he went in his pajama pants and winter coat. His logic was that since we were just going to stay in the car, no one would see his legs and he didn't need to get all the way dressed. Sounded well thought out to me - so that's what we did.

The nurse came for bloods yesterday and I changed the dressing on his Central Line. He hated me changing it as much as when the nurses do it so we've decided that since nothing is going to make it easier, he can be angry with the nurses every Monday and Thursday instead of with me.

He has been coloring and drawing a lot today and making great pictures of us with crayons. I am still trying to convince him that he should let me watch some daytime TV, like soaps and Dr. Phil and Oprah, but he isn't buying. Just like in the hospital, we sat there for almost and entire month and I didn't watch Days of Our Lives once. I did get to watch Dr. Phil one day when he was sleepy from Morphine and didn't feel like putting up a fight. Frankly, I'd rather have him fighting me to watch the Disney Channel all day than for him to have to be on Morphine.

We have shifted into a little routine here at home which is nice for all of us. The nightime meds and IV's take a long time to get ready so after dinner it's pretty much nurse duties until 9:30. Ryne is just great about all the meds and the "hook up's" (that's his term for when it's IV time). We are lucky he is so easy going, I can't imagine battling a rambunctious toddler to hook them up.

The sleep department is no better for Derek or I but Ryne seems to be enjoying his bed. He wants one of us to sleep with him which is awful on the back and even worse on the quality of sleep but, I keep telling myself that this isn't going to be forever and soon enough we will be back to normal sleeping arangements, it's tough to convince even myself sometimes but it is what it is.

That's all for now! Thanks for all of the prayers, keep them coming....we still need them.
We love you all-
g.

Monday, February 14, 2005 8:12 AM CST

Hey Everybody!
We are home again for a little while and things seem to be going great so far! Ry is doing well with all of his new medicines and both of the IV things that he gets. Our house looks like a sattelite Riley Room and that's okay with
all of us.

Ryne said that he wanted to take his Valentine's to his class this morning. It's so hard to explain to him that he just can't go right now. We barely understand blood counts and AGC, how do you explain to a 5 year old that his friends and school have to be on hold for a little while until his counts are good enough to be around other people.

Ryne seems to have grown up so quickly in the last 6 weeks, it's a lot to ask of a kid, but he seems to be rolling with it pretty well. He said right away this morning when we were watching the news that Melissa Etheridge must have cancer because she has no hair. He also wondered where big people go that have cancer because where we go there are only kids. Hmm, the wonderings of our Riley boy. I suspect that before he got cancer, it would have never occured to Ry that bald people could be sick - now he thinks ALL bald people have cancer.

Chaddie is coming home tonight to stay with us for awhile while Ryne is home and we are glad to have everyone under one roof again. It feels like forever since we've all been home. Derek and I figured out Saturday night that we have only been home 11 days in 2005 - that's lots of not home days and lots of everybody taking care of our homefront for us days. My parents have been so great, taking care of Murphy and taking care of the problems that Murphy causes, taking care of our mail and checking the house, running to the store so we have milk when we get home... the list just goes on forever - we couldn't make it through this without them. The support from both our families and our friends has been wonderful.

Keep the prayers coming we are officially halfway! Your prayers mean the world to us - so do all of you!
Happy Valentine's Day!
We love you all -
g.

Saturday, February 12, 2005 10:18 AM CST

Hey Everybody!
Just wanted to give you all a morning update to let you know that Ryne is doing well and we are on our last day of Round 2 Chemo. We just finished a spinal tap (the second one this week) and he did okay. I can't imagine having that huge needle poked into my spine once let alone twice a week. The medicine made him cry both times this week (like an un-happy drunk kind of cry - just weepy) so no great stories to tell this time.

Our roomates Mom came down with some kind of cold or something last night and she was up a lot, coughing and nose blowing so we didn't get much sleep. Then when Ry started to sleep I started to worry that we may catch her cold and spent the rest of the night freaking out about germs and our lack of what it takes to fight them.

While I was up though, I had some time to just stare at Ryne (as if we haven't done enough of that the past month). I was looking at him and thinking about how sweet he is and how cute he is even without much hair. His little head is so perfect and round and his skin is so soft.
Someone told me at the beginning of this journey that we would make great memories in the hospital and at the time I thought that sounded insane. Now that I've had plenty of time to absorb all of this, it makes perfect sense. During my normal life, I would have never laid awake in bed with Ryne sleeping next to me at 3:30 a.m. just spending some time looking at his head and being so thankful that he is mine - cancer, chemo, IV's and all. My normal life was too busy with work and not busy enough just staring at my kids. There will be some very good things in our new normal. Perhaps some better balance. New perspective at the very least. Don't believe that we were all work and no play (our beach and Vegas buddies can attest to that), I think that we'll just re-adjust our priorities - no giving up opportunities to stare at my kids so that I can stay up late and get one last bit of work in. Unless the work fairy stops by, I'll bet the work is still there in the morning.

Your time is now.

Keep up the prayers please-
We love you all-
g

Friday, February 11, 2005 6:01 PM CST

Hey Everybody!
We are having a some good and some bad day today. Ryne is kinda tired and feeling a little puny but is still "starving" and has currently requested some Taco Bell. I love this kid! He wants nachos and cheese with hot sauce, if there was ever any doubt that he is MINE - it's gone now.

We just gave him a bath and had his dressing changed on his central line. This task (dressing change) is most unpleasant as you recall, the pulling of the blonde body hairs hurts like a banchee and Ryne screams like one in the process. He crys, I want to cry and by the looks of him Derek wants to also. But we are now done and Ryne has calmed down.

Some IFD (Indy Fire Dept.) boys came to Riley today to build bird houses and paint them with the Cancer Unit kids and that was fun fun fun! We had them bring us a bird house to our room as Ryne couldn't take all of the hammering. The play room has hardwood floors and is not the best hammering place acoustic-ly speaking. Well our bird house is quite fashionable and looks like Cubs colors!
Picture about 20 kids all with IV poles in tow sitting in a 20 x 30 room with firefighters and kids alike armed with hammers and bird house kits (pass the Excederin Tension Headache please). The firefighters will probably not forget this experience anytime soon, the room was packed and the kids were thrilled. Seems like there are firefighters here doing something to entertain these kids more often than not...a great group of folks, those fire persons.

We are in the home stretch for Chemo Round 2 and are looking forward to coming home to rest before Round 3. Round 3 is scheduled to start on February 28th. Barring any fevers or need for transfusions we will be back in Indy then. The chance that he won't get a fever or need a transfusion between now and Feb. 28th is only about 25 percent so we won't be counting on it not happening, but it would be nice!

Well that's all for now - the Taco Bell delivery boy (a.k.a. Derek) has arrived with the Nachos and Cheese for his Highness and it's my job to dip the Nachos or stir in the hot sauce or something.

Keep praying -
We love you all-
g

Thursday, February 10, 2005 5:15 PM CST

hey Everybody!
We are having another good day today. More Chemo today and the condition is still good ( I hate to even say it out loud). Ryne is eating lots of stuff and has even ventured into new and exciting - okay that's a stretch- hospital food. Today he ate the usual chicken nuggets and added vanilla pudding, mashed potatos and gravy without the gravy, white ice cream, chocolate and blue milk (blue milk is 2the color of the carton) and loads of crackers with butter. He has a good appetite but has a hard time telling us what specifically sounds good. We'll figure it out as we go, that is how our life seems to work right now.

For those of you who know and love me and my annoying habits you know that "go with the flow and have no plan" is NOT how my usual life runs, so to say that we are trudging forward with no definable plan in terms of where we will be and when for sure is easier said than getting used to for all of us. The important thing is that the doctors have a definable plan and it seems to be working!!!!

The doctors at Riley rock! Dr. Holly is pregnant and is having a girl at the beginning of March - so we were discussing names (of course I suggested that George is a great name for a girl) she calls her baby Wilma (an alias so as not to give away the real name). Anyway, she has the greatest sense of humor and Ryne really loves her - we are blessed.

One more thing before bath time - are you all sitting down? Derek went to Blood School today! And got a 99n his Blood School test. He is officially off the hook and the list of dissapointments. Whew! Now maybe we can sleep at night!

Gotta run while Kelly (fabulous nurse) is still here to help us with the bath and changing of the dressing.
Keep praying -
we love you all-
g

Wednesday, February 9, 2005 1:27 PM CST

Hey Everybody!
We are now here at Riley again and have settled back into the hospital routine. We got to our room late last night so I was too tired to get out the computer to update the web.

We had a GFR test (testing kidney function) and a CT scan yesterday when we got here, saw one of the oncology team members in clinic and then got admitted. Both of our scans/tests were "beautiful" according to Dr. Holly. She says that it looks like everthing is gone that was left of the tumor now and that sounded great to all of us! The oncology team is very pleased with Ryne's progress and so are we.

We have a semi-private room this time and Ryne has had two roomates in less that 16 hours. His first roomie got to go home this morning and his new roomie is a 13 year old boy named Austin. Austin is Amish and he is from Nappanee. What a small world! He is very nice and his Mom is real nice too. We are doing much better in the semi-private room today than we were last night. Ryne was not liking sharing a room with a stranger - but now we've warmed up to the idea and are just rolling with it. He and Derek are working on his new Spiderman puzzle right now.

Tonights Chemo is a biggie and is the one that causes the most problems, ie. fatigue, nausea, the dreaded mouth sores. We are in hopes that the mouth sores will not befall us again. Fatigue is not too much an issue and nausea is controllable but the mouth sores are a wild card and they are not controllable in the least. Our new mantra- no mouth sores, no fevers, no mouth sores, no fevers!

So far so good! Please keep praying for Ryne's complete recovery - we still need you and your prayers. Your support means more to us than you know.

We love you all-
g

Monday, February 7, 2005 12:57 AM CST

Hey Everybody!
As you can tell I have loads more time to update when we are hanging out in the hospital than I have had since we landed here at home.

Ryne is doing so well, we are thrilled. It's hard to believe that tomorrow we start the process all over again and make him un-well again. We have to stay focused on the end result for this to make any sense. We made Valentine's last night and he was just like his old self, albeit a more frail (not to mention pale) version. He was laughing and joking with us and working very hard to make his letters perfectly. He slept well last night and we are currently enjoying our last day at home playing for a little while.

Ryne is enjoying his day anyway, I am working on some reports for the Township and trying to tie up some loose ends here at the homefront.

Ryne is reminding me right now that it is time for our 2 o'clock nap. I'll have to pass on the nap today as I've got just a ton of stuff to finish up. It's been nice to be at home even though we have been on constant "go" since we got here. Derek actually sat down and watched some of the Super Bowl last night, it was the first time I saw him sit down since we go back - me...not so much! No sitting for the nursing staff!

I'll check in again tomorrow -
Keep up the prayers please, who knows what surprises Round 2 has in store for us. Hopefully, none!
We love you all -
g

Saturday, February 5, 2005 10:24 PM CST

Hey Everybody!
Wow, we thought we were busy in the hospital! Being home is a whole new ballgame! We managed to fit 3 1/2 weeks of errands into one whole day today and Derek even made it to church while I stayed home with Ryne. I'll try to go tomorrow morning (we do everything in shifts now you know). Ryne had a great day today, playing quietly and snoozing a little in between eating Pringles, chocolate milk, a HoHO, a part of a doughnut, some orange juice, some kool aide and various other junkie snacks! All of this while never getting out of his pajamas - he is a talented young man. (Probably gets that from me!)

Ry is so happy to see Murphy and it appears that Murphy is actually happy that we are home again! I'll bet he was pretty lonely. He is even sleeping in Ry's room part of the night (never did that before).

We are looking forward to watching the Super Bowl tomorrow at home instead of from the prison cot/sofa. Our sofa is so much more comfortable. Ryne says he's going to take a bath tomorrow too! So that will be our big day. Chaddie is coming home after he gets off work and that will make Ryne extremely happy too!

Well, it's late and I'm kinda tired so I'll make this a short one - more updates tomorrow!

Have a great Sunday! Be safe if you are going out for the game!
Keep the prayers coming!
We love you all-
g

Friday, February 4, 2005 8:33 PM CST

Hey Everybody!
Sorry for no updating yesterday - we were so busy! We needed to go play as soon as Ryne woke up yesterday and so we spent 2 hours in the playroom! At 10:00 a.m. I had another HomeCare training and I am happy to report that I passed TPN (the initials for the IV nutrition) school with an A ! Good thing too since I had to know what I was doing when we got home LATE LAST NIGHT!!!!!!!!!!

Yep, stop rubbing your eyes, we are actually home!

Okay, it's only until Monday night or Tuesday morning but it's a start! We start Round 2 on Tuesday but have scans and clinic Tuesday morning, if it's really early we'll leave Monday night.

We arrived home under the cover of darkness (about 9:30) and by the time we unloaded the car, unpacked the meds, got the TPN ready and hooked up to Ryne, rearanged Ry's bedroom so we could reach him easier it was late and we dropped into bed at around 12:30. Chad came home and was here when we got here, I wish I had a camera with me so that you could have seen the smile on Ryne's face when he saw his Chaddie standing in the door. That is the smile we've been waiting to see for about a month now. Chad lucked out and the fog caused school to be cancelled today so he was able to stay home with Ry and I until about 12:30 this afternoon. Derek got up and went to work this morning, I know his buns were dragging but he was happy to get a sliver of normalcy back in his life!

Ryne played for a while today and snacked on some pringles and Hershey kisses, kool aide, lemonade and chocolate milk.
He held true to our newfound 2 o'clock naptime (when we usually crashed in the hospital) but decided to stay awake a little longer while I finished some laundry, he went to sleep at around 4:30 and woke up at 6. He looked so sweet all curled up on the sofa - blonde/white hairs sticking up everywhere and blonde/white hairs on the sofa cushion and pillow. He actually vacuumed the back of the sofa cushions for me today - for those of you who don't know, we have a cinnamon red sofa so his blondie hairs really show on it.
Right now he is upstairs working on his new "goodest connect the dots ever" that he got from Uncle Joe and Ant Shel. He is content, we are content (if not a little nervous) and we are recharging to fight through Round 2!!!

By the way - the blood drive sponsored by Cressy & Everett on behalf of Ryne is scheduled for March 7th from 8 to 2:30. My dear friend and personal Vegas vacation planner, Penny is scheduling the appointments (I think), you may call her at 574-233-6141 Monday thru Friday from 8 to 4:30 to get your time set up! Don't forget how important this is, I WILL get back on the soap box if I have to.

Also, my heart of gold baby brother is redesigning some new T-shirts. I assume he'll let you all know what they look like and stuff. Ryne was so excited that people were buying shirts with his name on them! The doctors and nurses all want shirts now too! Derrik (my brother) and my Dad have been printing like crazy men. They have both had the opportunity to meet some of you, and they seem to agree with me that we have the best friends around - they understand why I love you all so much now!!

Again, we can't thank you all enough for all of your prayers and support! We are humbled by the magnitude of your caring.

Keep up the prayers please, after Round 2 we're halfway home!

We love you all -
g

Wednesday, February 2, 2005 7:51 PM CST

Hey Everybody!
We had another good day today! Ryne wanted to play as soon as he woke up this morning so we headed off to the playroom for 2 hours of Mario. We had to take a break when Ry announced that his butt hurt from the wooden chair. I should say so - the boy has zero meat on his buns these days.
The HomeCare Education nurse came in today to educate me in the ways of running the IV nutrition at home and how to assemble the pump, add ingredients to the bag and the like. She is coming back tomorrow for another hour to make sure that I have an idea of what I'm supposed to do. The good thing about this is that she is the HOME care nurse (get it home???). We just may get there yet. We are scheduled for round 2 of Chemo on February 8th so if we do get home it will only be for a few days, but a few days are better than nothing! We do ask, though, that if we do get to come home that you continue to check the web page for updates instead of calling us or stopping over. The doctors are very direct in their orders that Ryne is not to be around lots of people. Chemo patients immune systems are very fragile.

Please don't take this for anything other than what it is - 3 people who haven't been home since January 7th, haven't slept all night since January 7th, heck, we haven't slept for more than 2 hours at a time since January 7th (some nights not at all),can only stay for a couple of days, have a sick boy and a new routine to get a handle on, and two parents who have to learn how to deal with their son and their fears all on their own. You get the idea, we love you all and want to see you when we can and moreover when we are sure that Ryne's progress won't be compromised.

Okay, that being said, our afternoon activities included 2 hours of playroom (Connect Four and Mystery Person)then back to our room for some American Idol and State of the Union Speech. Ryne is actually right next to me on the prison cot right now. I'm going to show him where the helicopters land in a second. We are doing quite well and things are looking up - after round 2 next week we are halfway done!!! Also, still haven't been able to get the photos to load, I'll try again later.

Ryne wants to send an email to one of his friends now so I'm going to sign off.
Keep praying- pray us home!
We love you all-
g

Tuesday, February 1, 2005 7:24 PM CST

Hey Everybody!
Lots more news to report today, we had an extremely busy day in the land of us. Ryne was up most of the day (by up, I mean awake) and we even went down to the playroom where he whooped up on Derek at the foosball table and then played Mario for awhile, we were out of our room for about an hour and that wiped him out.

After a short snooze, Ry drank a 1/2 carton (like the school size) of milk then I cut his finger nails and toe nails and he joked with Dr.'s Vic and Holly for a little while.

Dr. Holly is 8 months pregnant and she's always trying to figure out how she can get included on our spa day list here in the room. She deserves a spa day, I think she works her buns off and I may be biased but I think our oncologists are the best in the world - hands down. One of our nurses Ellen (we love her lots too!) and I were talking about us NOT having our Chemo treatments in South Bend - Dr. Vic wants us here and we are more than willing to do what Dr. Vic thinks is the best thing for Ry. At any rate she said something about South Bend being closer and I said "we don't want close, we want good - we want the best, close means zero to us if Ry is better off here". Anyways, she looked at me and said "then you certainly are in the right place!" Do you know how much these people believe in what they do here? They are dedicated to a fault and we will never be able to express to them how grateful we are that they are such an important part of our family. Maybe someday we'll find the words, somehow I doubt it.

This evening at about 6:00 we decided to give Ryne a bath and wash his hair..so much of it is coming out we thought that washing it would help eliminate the loose ones - it did. The bottom of the sink and bathtub were filled with hair and so was the towel. Ry looks like a new man! He's clean and he smells really good. His hair that's left is thin and very very blonde but he is just as gorgeous as he ever was - Donald Trump would be envious of this hair!!! Okay, I know that's not saying an awful lot, but we take what we can get- no complaints - ever!

After the bath he sat up in a chair for about 30 minutes and then we made a door hanger. We are getting in some good craft time. Now we are watching American Idol and Ryne is making some great faces due to some UNIQUE singing. We are so thrilled to see him having fun, I can't tell you how much we missed him these last few weeks.

Another wonderful quote has been brought to my attention by my cousin Myra. It is actually an Ant Shel-ism but since we are related we take full liberty and plagerise (sp?)the Ant Shel-isms whenever the mood strikes us. Anyway, I thought I'd share with you all...

"Everything will be Okay in the end...If it's not Okay, it's not the end"
You gotta believe that!

Keep the prayers coming-
We love you all-
g

P.S. I'm going to try to load some photos next, check it out (don't be alarmed if it doesn't work).

Tuesday, February 1, 2005 8:29 AM CST

Hey everybody!
I'll make this a quick update as it's early and not much has happened yet today.

Sunday and Monday were pretty uneventful in terms of Ryne changing anything - just hangin' steady. I got back to Indy late last night after a board meeting. I worked on Sunday from 1:30 in the afternoon until about 10:30 p.m. and put in another 11 hours yesterday before heading back. I feel like I am now at least partially caught up. Derek held down the fort here at Riley and Chaddie got to come home and stay with me Sunday night (albeit a short night after working most of it).

BUT...today there's a change - Thank God for the good!!!!
Ryne's AGC (overall blood count score -learned by me only so far - at blood school) is up to 1125!!!!!! It has been zero for well over a week and a half and the fact that they are coming up means his cells are starting to recover! Dr. Vic said yesterday that we should start to see Ry perking up and he was spot on (how do you like that Aunt Donner?).
Ry woke up this morning and is smiling and laughing and not talking because his mouth still hurts pretty bad - but even his poor lower lip is looking like it's on the mend.!!!!

You have no idea how excited we are!

I'll update again later today, we are going to get up and get moving a little today....baby steps are better than no steps!

Have a great day!
Keep praying -
we love you all
g

Saturday, January 29, 2005 6:28 PM CST

Good Evening Everybody!
Today is our anniversary - 3 weeks here at Riley! So much has happened since we first got here...it boggles my mind. Someday I'll read back through the journal and try to take in just how out of my mind I was, not today or tomorrow, this I'll save until we are all done with treatments. There is no time to look back right now. We are too busy looking forward and attempting to move forward.

Ry slept most of the day again today. His mouth and throat are so sore that he doesn't want to talk. Although, last night we had a 5 minute conversation at around 3:00 a.m. He is still being so brave even though he's pretty weepy now because of his owie mouth and throat. He's still spiking and breaking fevers with great regularity and when his fevers break, he is completely drenched. I'm trying to brush his hair everytime we get him out of be to go to the bathroom - the logic is to get as many loose hairs off his head as we can as they have a tendancy to "itch" him and get all over the place in his pajamas and in his bed. And so we wait. No eating or drinking because it hurts him to even swallow his own spit. It must be completely miserable.

On another note, I have been meaning to tell you for a few days that on Thursday Derek packs up his notebook and heads off to blood school only to sit there and wait for 10 minutes - and you guessed it - blood school lady was a no show!! Derek THINKS he is off the hook for blood school, but I'm gonna try to make sure he goes on Tuesday. The nerve of blood school lady...now I'm dissapointed with HER!

There may not be an update tomorrow as I am coming home. I have to have W2's to our employees by Monday. We thought that I could do them from here, but we couldn't make it work..so I'll go home and catch up some things and head back here Monday evening. I'll update Monday, but it wil be late.

That's about all for the news of the day. My cousin Pam sent me an email with another Maya Angelou saying that she loves so I'm going to write to you what she wrote to me (she writes like I do - thought in, words out)

"It is this belief in a power larger than myself and other than myself which allows me to venture into the unknown and even the unknowable" Maya Angelou

"The Power larger than all of us is listening" Pam Brawley

Keep the prayers coming-
We love you all-
g

Friday, January 28, 2005 4:58 PM CST

Hi Everybody!
Not much change today. Lots of sleeping (all 3 of us). Ry is running fevers and breaking them pretty consistently - he looks really sweaty most of the day. Hair is coming out by the handfuls and we are watching lots of SpongeBob still, no change there from home!!

The good news is that his lip looks a little bit better, like maybe it's healing up. His mouth is still a mess with lots of sores and those will stay until his blood counts start to rise. I know that I sound like a downer but if you want a true update, you get what we get and it's not always great. Our eyes are still on the prize - when this is over, we will have a normal, healthy, cancer free boy back and we'll move forward. Forward sounds good!

The doctors were in this afternoon and it looks as if our coming home early next week may be pushed back to midweek. We need to get some more stability before we head North. Our nurse is here hooking up Ryne's IV Nutrition bag - now I'll be looking for visible improvement! More IV bags, we've had to add another pole...Dana says we now have a Double Wide. Great!

Sue from Cressy & Everett e-mailed me that they are going to have a blood drive soon on Ry's behalf - I'll let all you potential donors know when and where - you can help by giving blood. My baby probably won't get it, but someone else's baby, mommie, daddie or grandparent will and that could make all the difference to them.

We got an e-mail from the 5th graders at Trinity saying they were going to P.U.S.H. for Ryne.
"Pray Until Something Happens".
Derek has modified their saying to P.U.S.H.-P
"Pray Until Something Happens - Positive"

Keep em' coming.
We love you all-
g

Thursday, January 27, 2005 8:28 PM CST

Hi Everybody!
This probably won't be a long update tonight. The day in a nutshell had more bad than good and more sleep than anything else. We'll have days like this - you just get your hopes so up on the good days that if they are followed by a/some bad days - the bad day kicks you in the head.

Ry has at least 4 mouth sores and probably a few sores in his throat so he is back on morphine for pain. Because of the sores, he can't eat (it hurts too much) and he has lost more weight. When we got here he weighed 60 lbs. and todays weight was 48 lbs. It is extemely hard to see him so thin and weak. The doctors are going to give him some IV nutrition tomorrow (more to put me at ease than anything else). I don't understand how he will get stronger if he isn't eating - it makes sense that he needs to eat although the nurses tell me they see kids get better without eating all of the time. Because of the morphine he slept from 1:00 this afternoon until 6:00. When he's up he's only up for a little while. He's had a fever on and off today too so they did more blood work to make sure there is no blood infection. So we'll wait and see.

We did have him up and in a chair while we changed his bedding and then he was ready to get back in bed. While he was sitting up, I decided to brush his hair as it was sticking up everywhere from laying down and being sweaty etc. anyway lots of his hair is coming out now - lots in the brush and all.

We got a package in the mail from Ant Shel & Uncle Joe yesterday and included amongst the things was a card for Derek and I that has a saying from Maya Angelou

"Alone, all alone. Nobody, but nobody can make it out here alone."
Thanks to you all for letting us know that we aren't alone.
We love you all-
g

Wednesday, January 26, 2005 7:54 PM CST

Hey Everybody!
Did you miss us yesterday? I wish I could tell you that I didn't have time to update because we were driving home but that was not the case. I actually came home (alone) and stayed overnight (with Chaddie) and got some work to bring back with me and returned Ryne's library book (really late)!

Yesterday (tuesday) Ryne had a good day and got up and walked with Derek, 1 lap around the nurses station and they went to the playroom on another outing and played foosball for about 5 minutes. This wiped him out and he stayed in bed all day today. He has a sore throat, we think it's probably one of the Chemo sores (like a canker sore) and he feels pretty yucky from that. There will be good days and bad days and we are learning that they can turn on a dime. Ry got a unit of blood yesterday because his Hemoglobin was 7.7, under 8 wins you one unit of blood here and he got platelets today because he was down to 24 (good is 150-450). This is totally normal and we can expect it to happen with every Chemo - if it doesn't we are lucky.

This gives me a good opportunity to remind you all how important it is to give blood if you can. We take for granted that if we need blood the hospital will have it ready but it has to come from somewhere. Derek and I give blood on a regular basis, it takes just a short period of time and can literally save a life (and you get to eat cookies afterward). The South Bend Medical Foundation in Edison Lakes is open at 7:30 in the morning - so you could go give blood before work. Did I mention that there are
COOKIES? Go do it, don't make an excuse, remember what a cupcake I can be - and if I can do it so can you!!!

Okay, I'll step off the soapbox for the rest of my update.

I went to Trinity today (Ry's school) and got to see Ryne's friends and talk to them for just a few minutes (they were in chapel). I haven't cried for a few days, it was all I could do to hold it together in front of his friends. They all love him so much and it's a validation of sorts that we did something right - we raised a sweet little boy that has LOTS of friends at school. It occured to me that here I was with about 30 little kids that were all praying for MY little kid - they don't care what he looks like, they want him to feel better and get back to school to play. Ry's "best friends" (there are like 14 of them) are wearing their team ry ry shirts to school tomorrow and Ry is going to try to wear his here so he can be part of the day too. It was very clear that the "kindergarten puzzle" was missing a piece.

Their thoughts are simple, their prayers are simple and sweet, their requests are so seemingly easy "we want Ryne to get better so he can come back to school and learn and play with us - AMEN!"
And we echo - AMEN!
We love you all-
g

Monday, January 24, 2005 8:17 PM CST

Good Evening Everybody!
We had quite a big day today. Ryne had his spinal tap (the last step in the first round of Chemo), at 11:30. They gave him some Morphine and some Versette (sp?) to relax him and you should have heard him...telling the nurses that Daddy works with a guy who does drugs and he goes outside to do it so the bosses won't see him and that Ry tells him to stop but he won't and this same guy likes number 88 and Ry thinks that is a bad idea. The "guy" is a dear friend of ours named Barry (Ry calls him Mulberry) and he does in fact work with Derek..that's pretty much where the truth starts to get twisted. Barry smokes (cigarettes) which Ry apparently thinks is a drug and he does go outside because they can't smoke inside any more after Derek's sinus surgery. Ry does want him to stop smoking (we all wish he would) and he does like Mr. Dale Jarrett which is one too many 8's for Ry's taste...it was a pretty funny story from a pretty loopy little boy. The nurses say they want to have a talk with "Mulberry".

After a 2 hour snooze he then ate a whole bunch of chicken nuggets (like 7) and drank lots of milk, then I gave him a bath, really in the bathtub sitting down bath and we washed his hair with baby shampoo (this is far more complicated than is sounds because we can't get the central line wet), brushed teeth, then I (yep, I, the one who nearly passes out when I get a paper cut) changed the caps and flushed his lines,and changed the dressing on his Central Line it was like a test with Kelly (a great nurse) watching to make sure that I knew what I was doing for when/if we get to go home someday, painted a fish keychain, watched some cartoons and ate ice cream for dinner, took all of our medicines and now he's sleeping with Derek curled around him in bed. Derek will need the morphine tomorrow for his back.

I'm exhausted and in need of a hot shower and a change of clothes. Derek talked to his boss today and he was so pleased that they are willing to work with us in terms of Derek's needing to be off work about a week at a time for the next 4 months or so. We are both extremely fortunate to work for real people with whom we can communicate instead of some big corporation where no body gives a rip about your family as long as you show up every day. Another thing to add to my "grattitude journal".
I'm turning in - please keep praying. Ry's counting on it, he told me he's working really hard to get better.
Hard work indeed!
We love you all -
g.

Monday, January 24, 2005 7:26 AM CST

Good Morning Everyone-

Sorry for the lack of new information yesterday, Derek left for home around noon and you wouldn't think that being the sole companion for one little boy who mostly stays in bed would be too tough but, yesterday was....
It wasn't that tough, just busy. Ry is getting so much IV fluid that he is going to the bathroom every 45 minutes to an hour and since he's so hooked up to stuff, he can't do it without help. He also has a sore on the inside of his lip (where he bit it really bad during his seizure) that makes him not want to eat and "feel like poop" (his exact words). So while he was trying unsuccessfully to sleep yesterday, he wanted me to stay next to him in bed so he could sleep better. He tossed and turned all day, cried on and off because his lip hurt and was just basically miserable. At about 8:00 the nurses gave him some morphine so that he could rest and his lip wouldn't hurt. That seemed to work as he slept in two hour stretches (before having to go potty). He still wanted me to sleep with him so I did and now I think I need morphine for my back.

We are on our last day of the 1st round of Chemo and we wrap up our first week with a spinal tap - some fluid out and some Chemo (ARA-C and hydrocortisone) in. We then take a 1 day break and start this hormone (via injection) to stimulate new cell growth, that lasts until we get to round two and go about destroying cells again. A crazy circle that lasts until June (approx.).

I'll wrap it up for now and update again this evening. Have a good week and please keep praying for Ryne.

We love you all-
g

Saturday, January 22, 2005 10:29 PM CST

Hey Everybody!
Just a short note to let you all know that the doctors told us today that we will be here for about another week or so. There were lots of things that factored into their decision - his is not the classic case I guess. It sounds like they are being extra cautious (which we really appreciate). When we heard the list of reasons we are staying, I can't say that I would do any differently. All of the things that have happened in the last 14 days have added together with this new little fever last night to grant us another week to 10 days here at Riley.

I guess that generally you get diagnosed and there may or may not be some surgery and then Chemo gets started right away and you go home. We had a pretty major surgery on a pretty sick little boy, then we had kidney issues, then we had the seizure and PICU stay, then we had major Chemo and a fever too. Whew! We have been busy.

I was kinda depressed today after they told us we were staying, I think Derek was too. We will stay until they tell us we can go home, it's not that. I guess I felt like I want him to get better so badly, that them telling us we weren't ready to go home yet was just dissapointing. Derek is going to come home Monday if the weather is okay so that he can make some sort of arrangement with his employer. My employers have gone far above and beyond to make sure that things are taken care of. I can actually do lots of my Fire Station work from right here on my laptop in Ryne's room thanks to Timm & Scott from Clay and Bill & Mike from Net Results. Lisa Leblanc is covering my real estate buns while we are here. Thanks to them, I don't have the added pressure of worrying about my jobs...that's huge!

We had another spa night here in the room tonight with a large focus on removal of adhesive yuck from various spots of Ryne's skin. He has a rash spot on his neck from the bandage from the 1st catheter and then little vampire looking spots from the 3 stitches that held the catheter in place and the actual hole itself - his left shoulder is kind of a mess, but we will fix it in time. He just looks so thin and frail to me - it breaks my heart. This is the part of our new life that I will miss the least. It's still hard to imagine that my healthy, stocky, blonde haired, tan and smiling boy has been reduced to this.
I feel confident that he is going to be back to normal in time - it's just hard to take right now.

Make no mistake, we may look weak but we are far from defeated, our hearts and faith are strong and so is our little boy!
Remember, Cancer Cannot Cripple Love!
Keep up the prayers-
We love you all-
g.

Saturday, January 22, 2005 12:06 AM CST

Just a quick update for mid-day, I'll update again this evening.
Ry got up this morning and ate 3 bowls of Lucky Charms - followed by about 7 oral medicines that he has to take and then took a 2 hour nap. He is up again now and is saying he's hungry but I have to tell you, some of this hospital food would make the people of Fear Factor cry. Ry is a finicky eater anyway so getting him to try new things is quite a task - getting him to try new things that look like some of these things is impossible.

We actually hit the 101 plus mark in the land of temperatures last night at midnight. Now we will wait to hear from the doctors on the results of the blood cultures to determine where we are in terms of getting home for a little while.

I also wanted to let all of you know how much all of your messages in the guestbook mean to us. We read them whenever we have time, but always at least once a day. It's so nice to know that you all are thinking of Ryne and us too. The messages have all touched us not only by content but by shear volume. We are only 3 hours away, but there are times that we feel a world away from all of you - the guestbook is a nice way for us to stay connected and not feel so "out of town". You all mean so much to us, we would like you know how thankful we are for each and every one of you.
Be careful in the snow this weekend and keep the prayers coming. We KNOW they are working.
We love you all -
g

Friday, January 21, 2005 6:58 PM CST

Tomorrow we will be here for 2 weeks. Surprizingly enough the time has gone quickly. We are so busy learning new things and worrying about new things to worry about every day that time has slipped by. It seems we always have a new "thing du jour" to worry about, first it was uric acid and kidney function, then it was post surgery internal function, then it was on to high phosphorus and high calcium, then seizures and high blood pressure, now our magnesium and calcium are low and the other issues have either resolved themselves or have been fixed with chemicals or medication. I'm sure that tomorrow will be yet another part of the puzzle that needs to be custom fit.

Ry isn't feeling well today. Not throwing up, just not feeling well and battling a low grade fever since this morning. His blood count AGC is zero today and the doctors all said that shows us the Chemo is doing it's job. The immediate goal now is no fever above 101. Should his fever go to 101 or above, we are here for another 10 days on antibiotics. The chances that will happen are good for all kids on Chemo - we could also get him home and he could spike a little fever and we turn around and head back here anyway. It's a process and the main concern is infection.

The home health education nurse came in today to show us what we are going to need to do in case we ever get to come home. We will someday - just not sure when.

We were up every 45 minutes last night going to the bathroom and at one point Ry said "Mommie, did you know it's 3 o'clock?" I looked at the clock and it was in fact 3:00 a.m. I guess we can learn the rest of our clock skills while we are here if nothing else. One of the Chemo drugs that he got last night was in a 6 hour drip - Doxorubicin - and is bright red. The nurse said it was important to flush it through his system (via urine) and not to be alarmed if his urine was a red or orange color. I'm glad she told me that because facing bright red urine in the middle of the night without warning would have sent me into an immediate panic. So many chemicals and so many effects - another thing that I consider overwhelming.

This "round" of Chemo will be over with on Monday and then we hope to see an upswing in his blood counts fairly soon. It will be our first chance to see what his new normal may look like and to try to establish a vague idea of what to expect during our recovery periods. We will then have 3 weeks off, come back for another "round" lasting a week, have 3 weeks off, and repeat this cycle two more times. We hope to be done with treatments (therapy, as they call it here) by mid June. There will then be 5 years of tests, scans and random labs - the "all clear" should be the result.
We are praying that this is in fact the result. We have realized that we are much luckier with our diagnosis than many other families here. The nurses say that Ry is the champion medicine taker on the floor. Not the championship that we dreamed of when we first saw his face in June of 1999 but we'll take a second or third place in baseball and be the champion over this cancer any day.
Keep up the prayers please.
we love you all -
g

Thursday, January 20, 2005 9:45 PM CST

Hi Everybody!
We had another good day today - Ryne is getting lots of Chemo now and we are waiting to see of there are any adverse side effects. We are lucky so far and I hope that continues. Remember good days are as simple for us now as eating and keeping it down.

His blood counts are way way down today (12) which means he is very suceptible to infection and germs. This is a result of the Chemo and we are to expect this to happen after every treatment for up to a week or longer. When his counts are below 1000 we will be flying way under the radar. We will be staying home and not able to have visitors. We are so nervous about him developing an infection while his immune system is compromised that we will most likely be way under the radar the majority of the time.

I actually went to blood school today. Marion was happy that I was there. I learned a lot while I was there and met 2 other parents that are going through different versions of our same hell. It occured to me today that I can compare Chemo to clinically induced AIDS - the immune system is seriously compromised and the risk of infection from something as innocent as the sniffles is very real. In fact the mouthwash they have the kids use (for when they get these awful mouth sores) is called Philladelphia Mouthwash (did you see the movie with Tom Hanks?) It's a lot to grasp.

Ryne spent a considerable amount of time coloring today while I worked on our Annual Report for the Township and Fire Territory and Derek watched golf and read USA Today. We are fairly comfortable in our little room here - the "prison cot" has proven to also function as my "office chair", our "sofa", Dereks "breakfast nook table" and our "library". We had "spa night" here in our room last night and Ryne got the full treatment, hair wash, bath (sort of..he has lots of things that can't get wet still), nails done both hands and feet, nice teeth brushing, and a back massage. It wore him out but he looked so great afterward - I know he felt better. It's been a long time since giving Ry a bath was a 2 person job.

We are working hard to get well and are looking forward to sleeping in our own beds again someday.

Please continue to pray for Ryne to beat this. We appreciate all of your prayers and support more than words could ever express.
Rent the movie "Pay It Forward" this weekend. One little boy can change the world.
There's a little boy sleeping in the bed near me that has certainly changed ours.
Perhaps he has changed yours too.
We love you all-
g.

Wednesday, January 19, 2005 5:32 PM CST

Hi Everybody!
Well we had another big day today. Ryne had another surgery (hopefully the last for awhile) to replace the Hemo-Dialysis Catheter with the Central Line and they also drained his right lung (retaining fluid and giving the Methotrexate a place to "pool" and cause us more grief). He walked to surgery instead of riding in a wagon or on a rolling bed. It's interesting walking with him now, in case your mental picture is something like get out of bed and go - the reality is he gets out of bed very carefully because he has no less than 5 wires and tubes hanging out/off of him and walks fairly slowly while Derek or I walk next to or slightly behind him pushing the IV pole that has 3 pumps and a control box attached, he is attached by 2 tubes to the IV pole and has to wear a surgical mask because his blood counts are down and we cannot risk germs at this point. Despite all of this - it is a very common sight here- he is happy to be "out and about" and is seeing for the first time (with clarity) the outside of his room.

He came out of the surgery, woke up and said "I'm REALLY hungry", he then proceeded to eat 4 chicken nuggets a small bag of Cheezits, 6 mini chocolate chip cookies and a 1/2 can of 7Up. I was certain that I would be seeing it all again very soon but it actually stayed down.

By some of the remarks he has made we think that he doesn't remember any of last week - that's okay, there's a lot of last week that we'd just as soon forget.

He is currently laying in bed and watching Nickolodean and is hooked up to a large bag of IV Methotrexate - we have now reached the big time in terms of Chemo. He got Vincristine about 3:45 and they started the Methotrexate at 4:00 the Methotrexate is bright yellow and runs into his IV for 4 hours - seems like a long time. There will be another round of different chemicals tomorrow through the course of the day with one medication taking 6 hours to run.
His "counts" are now a huge issue and we are worried that he's going to feel pretty yucky very soon. It is not uncommon to lay here in the night when things are fairly quiet and hear kids in this unit continually throwing up. It would be unrealistic to hope that it won't be us one day.

One of the nurses aids came in to get vitals and saw Kelly (our nurse) starting the bag of Methotrexate and said "If you want pictures of him with hair you better start taking them now...in a week you won't have the option".
We don't have too many options right now anyway.
We are exercising our only one.
Keep up the prayers - we gather strength from your encouragement!
We love you all-
g.

Tuesday, January 18, 2005 8:50 PM CST

Hey Everyone!
Ry had a great day today - as I write this he is playing War with Derek on his bed. He ate 3 times today (very very small amounts) and barfed 0 times today! This now equals a good day for us! Eat-yes, Barf-no = good day!
I came home today for a little while, long enough to check on the house, pick up some more clothes, say Hi to the Murphy and do payroll at the Fire Station. Derek spent the whole day with Ryne and I thought he would like to write the journal for today - Derek didn't think that at all.
From what I can gather, the day was quite fun. Lots of doctors in and out, watching some cartoons, playing Uno, snoozing, eating and generally enjoying each others company. Sounds like the boys did just fine today.

Ry is having another surgery tomorrow to put in his Central Line. He currently has a Hemo-Dialysis-Catheter in, it's like a central line but can also be used for Kidney Dialysis if needed. The surgeons thought that was the best option when Ry's kidneys were being unhappy. They are apparently happy enough now that we can remove the catheter from his shoulder and replace it with the Central Line in his chest. The doctors will be able to use this line for all of Ry's Chemo and to draw labs as well. This means no extra "pokes" and that also equals good.

I think Derek wore him out with all of the "activity" today and he has decided to turn in and sleep. He was actually up for 6 hours in a row today. I'm reluctant to be really encouraged by today as I know that this run of energy can turn on a dime.

We did get to spend some time this evening reading some messages from the guestbook to Ryne and he really enjoyed listening to them. He is so happy to know that so many people care about him. We are humbled by everyone's caring. I guess I always thought that we had the best friends around, now I know it. Today's journal will be short as we are both tired, me from driving and Derek from being the sole source of companionship for Ryne for 13 hours while I was gone.

On another note altogether, Chad got his drivers license today and is now in posession of the white Altima (my former Altima)!!!! We are so proud of him - it's almost disgusting that I have the two best boys on earth!!!
Look for my two blondies at a miniature golf course near you soon!
Keep up the prayers please!
We love you all,
g.

Monday, January 17, 2005 5:00 PM CST

Hey everybody! It's a wonder what a day and four hours of sleep can do for a person. We had another busy day today, Ry Ry had an EEG and another CT Scan. I know that this doesn't seem like a lot to do over the course of a day, but it sure did wipe Ry out.
He is such a brave little boy, generally it is not in his person to be happy about strangers even talking to him let alone touching him, and somehow he is gathering up the courage to not melt down during all of this. He does show us visible signs of how scared he is ie: shaking (which scares the hell out of me after the seizure)we ask him if he's scared and he says "no, just nervous". It surprises me that he hasn't cried (maybe we cried enough for all of us).
Ryne was up and awake for short periods of time throughout the day and for some brief moments he was joking and smiling. He and I played a game of Go Fish and Fish War today (he won both games) and he is speaking in a louder and clearer voice than the quiet/squeaky voice we have been hearing as of late. There was a SpongeBob marathon on Nickolodean today and he watched TV on and off for awhile too.
He also tried to eat a bite of lunch today which he promptly threw up and then followed that session with the throwing up of the Gatorade/CT contrast cocktail we had to give him. Another part of our new life.

We just met with the Onconlogist and he showed us pictures from the CT scan of Ry's abdomen last Saturday as compared to today and wow what a difference. The tumor was huge, it went from the front of his abdomen to his back and fully involved his right side, even pushing up on his lung. The good news is that now its mostly gone and the Chemo will kill the rest of it.
We are learning about all kinds of meds that Ry will be taking at home once we get there and we still haven't made it to Blood School. I was spozed to go this morning, but I didn't set the alarm right in the hotel and overslept by an hour (seems to me like 0 hours of sleep since Thursday should somehow earn me a special one on one blood school - ya know I don't ask for much). The blood school teacher is fairly annoyed that we haven't gone yet but we have been a little bit pre-occupied - she'll learn to deal with her dissapointment in time. Derek and I are taking turns sleeping, I usually send him to the hotel just before 11 and he comes back to the hospital at around 3:30 and then I go to the hotel and sleep till 7:30 or 8. Ry just goes with the flow. Last night he woke up at 1:30 and we watched a Disney movie for an hour - then it's our turn to go with the flow.
My Dad brought us a bag of blue "hope" bracelets supporting coaches against cancer and we are giving them to our favorite doctors and nurses. They love them and we are so glad to know that Mrs. Freshour (1st grade teacher at Ry's school) wrote in our guestbook that lots of the kids at school have them now too. The wishes and prayers on our website guest book have been a real source of comfort for Derek and I and have made Ry smile too.
It hits me out of the blue from time to time that this entire building is full of sick or hurt children - it's overwhelming.
Equally as overwhelming is that in this place of despair there is such an enormous feeling of hope.
It is what allows us to face another day.
Keep up the prayers.
We love you all - more than you may know.
g.

Sunday, January 16, 2005 7:53 PM CST

I will never forget, as long as I live, how quickly my day turned from "quiet" to pure hell yesterday.

Ry had a grand mal seizure last night and ended up in PICU breathing on a ventilator. He is now out after many tests and breathing on his own. The doctors have attributed his seizure to a combination of high blood pressure (brought on by one of the Chemo chemicals) and the drug Methotrexate. I have never seen, nor do I want to again, something that terrified me like that seizure did. The whole scene was something like a slow motion version of ER.

We know that we are in good hands here, but nothing could have prepared me for that. Literally face to face with potentially losing my baby boy, I cannot tell you in words the magnitude of pain we were feeling. For those of you who know me the best, you know that I don't cry easily, nor do I cry in front of many other people. Last night, through to this morning, I couldn't stop.
Someone said once that there is one thing that is truly universal and that is pain. No matter where you are from or who you are, pain is the same for everyone. The whole ordeal lasted 24 hours even from beginning of seizure to out of PICU and back in our room. As I write this, Ry's window overlooks the helipad and Samaritan Hospital is flying in with another child and that means there is another parent feeling the same pain that I was feeling
last night. I'll add them in my prayers tonight and hope that they, like I, are given more days with their baby.

We are back in our room here on the 5th floor and I remember saying last night that I just wanted to get Ry back to this floor and out of PICU and off the ventilator. Adding to the list of things I never thought I would hear myself say, "Just please let us get him back to the Cancer Unit". Cancer doesn't scare us anymore, we will beat this, we are in control of this. I learned last night what it means to be truly scared. I never want to go there again.

Keep up the prayers, we need them even when you might think we don't.
After last night, I can tell you they are being heard.
We love you all,
g.

Saturday, January 15, 2005 4:00 PM CST

Today has been really quiet. Ry hasn't wanted to eat today and is still sleeping bunches. We haven't gotten him up for the walk yet but that is still in our plan and definetely NOT in Rynes plan.
The onclologists came in this morning and said that his electrolytes look as if they are rebounding to almost normal. They were smiling when they said this so we assume that it is a good thing. We have to go to blood count school on Monday and Tuesday morning so that we will know how to read labs, know what we are looking for in terms of platelet counts, red and white cells etc., and we will know when/if we need to be in isolation or whether or not we need to keep him home from school. I can't imagine him going back to school someday at this point but the doctors assure us that it will happen and and that someday we will be comfortable with this. Personally, I would like for him to live in a bubble with a moat around it and a chain link fence. I suppose the "Social Work Team" would not view this as appropriate behavior so I guess we'll hold off ordering the back-hoe for now.
Nurse Patty (one of the best nurses I have ever met) just came in to change Ry's Central Line dressing. He cried most of the time because all of his little blonde body hairs are being pulled of by adhesive of one kind or another, I'd cry too, that's gotta hurt. We are blessed to be part of the blue nurses crew. They love my son like he is their own. Dana, Patty, Missy, Lindsay are among the favorites. Dana was here with us on our second day and she stayed in the room and talked to me for as long as it took for me to have my questions answered and for me to just talk about how confusing and scarey this is. Missy and I chat while Ry is asleep (she's a night nurse and she loves Ry to pieces) she is one of the nicest people I've ever met. Patty is the Mom of a 4 year old named Sam and he sounds like a hoot, Patty is such a caring person and she really loves her job and her "kids". Lindsay is something else, she is sweet and just thinks Ry hung the moon and the stars, she reminds me of Nikki Frantz, and just has such a positive personality she is a joy. I wish I could bottle the passion these ladies have for there jobs and their "kids".
All for now, Please Please keep praying...this woods we're in is a lot bigger than we thought!
Love you all-
g.

Friday, January 14, 2005 9:06 PM CST

We have a new and really exciting development!!!! We are almost as excited as the surgical team was when he pooped!

Ry Ry ate 2 and 1/2 chicken nuggets today and a carton of CHOCOLATE MILK!!!! For those of you closest to us you know how important the chocolate milk is to Ry and the food is to us.

He is still sleeping lots and lots of the day and tomorrow (Saturday ) we are planning on getting him up for a walk. I don't think that is his plan - but it is ours. He is quite swollen from all of the IV fluids they used to keep his kidneys flushed, so we are hoping that a little walk will get some of that fluid moving.

Today Ryne asked me if his hair was "out": I said do you mean "sticking out?" and he said "no, is it gone?". I said he still had hair and he asked if it was going to fall out and I said yes that it was and that Daddy was going to have no hair too and that even though it would fall out it would come back. He seemed okay with that but it let me know that he either overheard us when we thought he was asleep or that he is noticing that there are lots of kids around here with no hair. Either way, he is feeling good enough to understand that there are going to be some significant changes in his life. Kind of made me long for the days when he would have been to little to fully understand. I'm not sure how we will explain what is happening and why when we still can't quite grasp it ourselves, but the Social Work Team (yep, another team) is standing by to educate us as soon as we are ready...I guess we better be ready very soon.

Thank you for all of your wishes, prayers, cards, and balloons. The nurses just love Ry and are teasing us about building on to the house to make room for all of his new stuff! We have his balloons where he can see them all from his bed and he likes it when the heat/air kicks on and blows them around.
I guess I better turn in while the gettings good, the "prison cot" (our name for the small bed in Ry's room) is actually growing on us - or we are so tired that it seems comfortable, either way, when Ry goes to sleep, we try to sleep too.
Keep up the prayers please!
We can live without hair, we cannot live without hope!
We love you all-
g.

Friday, January 14, 2005 12:46 AM CST

We had a good day yesterday in terms of getting more stuff out and or detached. Ry is no longer on oxygen and that means his lung is probably starting to clear out!!! The Oncology doctors came in this morning and they are very happy with his progress. It's interesting that medical progress and mental progress are two very different things with kids, since he really only understands that he doesn't feel good, his mental attitude is unaffected by the doctors telling him he is doing so much better. In his world, he still feels yucky and tired and therefore he is still not doing better. The doctors say we have "turned another corner" and that is a good thing!
For Derek and I it will be a better sign once he is able to act like he is feeling better - visual reinforcement of what the doctors assure us is going on. They have really lifted a lot of the diet restrictions for him and exept for dairy products, he can eat whatever he wants (which is nothing yet except the cookie yesterday). The dairy is being withheld because the Renal Team (whew, lots of teams) feel as if it is too much phosphorus. Lots of labs and lots of new things to understand how they all mesh together to make us feel healthy. I'll update again later this evening. We are doing well and are actually getting sleep when it is our "turn".
Ry's a trooper. I told him the other day that he doesn't have to be a fireman when he grows up now cause he's LOTS braver than them already (maybe even braver than my firemen), he says that's still what he wants to do!
Keep up the prayers, you'll never know how much they mean to us and more importantly to Ryne.
Love you all,
g.

Thursday, January 13, 2005 1:49 PM CST

Sorry that I didn't get to update yesterday. We had a very busy day. Ryne got his catheter line (Foley's) out, his NG (we think that stands for NO GOOD)tube out - that went through his nose and down his throat and into his stomach to suction out the stomach yuck and rest his newly operated on intestine and bowel, he had three chest xrays and got two of his IV ports removed. Whew! We also got the formal diagnosis for his cancer type- it is in fact a Burkitt's Lymphoma, you can find out more by going to Cancer.org. Also know that the Oncology doctors here have warned us about venturing too far out there on the internet and getting false info. They're advise is to stay close to cancer.org or cancer.gov.
The surgeons are impressed with how fast Ryne's tummy is recovering he is actually wanting real food and has eaten almost a whole chocolate chip cookie! His incision is just about from hip to hip and for those of you fellow beach bunnies, the surgeon fixed his "outie" while he was in surgery! Understand that he is not up and about and is still a pretty sick little boy, he just has these moments of the normal Ryne that come through and save our sanity. He told me Tuesday morning at 3:30 a.m. that he wanted food and for me to take that tube out "right now and start doing what he says I should do". Yep, the normal Ryne is a most welcome visitor.
We will be having about 5 months of Chemo - not everyday- the series are spread out and I'll let you know how those are going and where we are in the process via this web site. The prognosis is good and we are looking forward to having a normal healthy, cancer-free boy back by summer if all things go right.
Derek wants me to let anyone who wants to help know that we appreciate all the offers but are not in need of anything but prayers right now. You can help out as a whole by getting Riley Plates for your vehicles, getting the blue "hope" bands (the are like livestrong bands and they have them at Martins) supporting coaches against cancer and giving blood. We have had Riley plates on our vehicles for about 3 or 4 years now just to support the families who need it. I hope there will be someone else in line behind us - someone who doesn't have a family need, but just supports the cause- we never dreamed we would be a "Riley Family Member" let alone a member of the "5th floor club". The 5th floor is the childhood cancer research floor.
I'll write more later. Keep up the prayers...we will beat this.
There is a sign on the fridge here that says
"Cancer cannot cripple love" - truer words were never spoken.
We love you all.
g.

Tuesday, January 11, 2005 5:33 PM CST

For those of you who have not yet heard, or are just visiting for the first time, we are here at Riley Hospital with Ryne. He has been diagnosed with cancer. We are still awaiting "formal typing" of his cancer but it is presenting itself as a Burkitt's Lymphoma. Ry underwent surgery yesterday to remove the majority of the tumor from his colon and small bowel they also removed part of his bowel and colon. We are still "in the woods" in terms of his kidney function and reconstruction function but I will try to update this information at least once a day. We will be here for awhile, at the very least another week. And then we will be here on and off over the next four or five months for additional therapy (yep, chemo.-I still can't even believe this). I will spend some more time explaining how this all came about but wanted to at least get everyone a starting point.
From my understanding, you can send us messages from this site, but since we are extremely new at this, you'll have to figure out how. I'm heading back up to Ry's room so this update will be short. They started his first Chemo IV
at 6:10 p.m. - I swear to God, I can't believe this is now our life. We are in good spirits and don't need anything but prayer at this point. Ry is strong, and we are a lot stronger than I thought. I'll stay in touch. Check here after 6 p.m. for new updates.
Love you all -
G.

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