Wednesday, June 30, 2010


We have had a nice vacation at home. I know weird right?!? I feel like we "live" at Riley and take mini vacations at home right now. We have had a great week; although I am not taking him out in public places to risk catching something while his counts are low. Keegan has been able to sleep in his OWN crib, play with his OWN toys and be with family. Friends have come by to visit and mommy has got to run a bunch of much needed errands.

Chemo Round #2 was started here at home. He has been given Etoposide for the last 8 days and for 5 days he received Temozolomide. Both are highly toxic and if you are in childbearing years should be very careful in handling it. My mom, who happens to be an RN and has moved into our house to help take care of our pup dogs while we are "home at Riley", has been gracious enough to prepare each evenings dose which both need to be mixed with Apple Juice. The first night we tried to put the "special juice" in a bottle to have him take orally, but when he tasted it we quickly knew that oral was not the way to go and we needed to push it through his G-Tube. He has responded pretty well, not any vomiting and he has been in such a great mood ( I personally think it's cause we are home).  We had to run to Indy for Vincristine yesterday, its a IV push chemo drug that he will get almost every week (9 doses). During our appointment yesterday we discussed our inpatient stay this weekend , what drugs would be given and how it should just be a wham-bam-thank you mama kind of stay. Check in Friday at 1, chemo drugs later that day with LOTS of IV fluids, then chemo drugs Saturday with LOTS of IV fluids and released either Saturday or Sunday! YEA maybe we will be home for  small get together on the 4th-who knows! Downside to that is we have to be back on Tuesday (In Indy) for his Vincristine shot.

We are very happy to be home and he has been made some new milestones while at home. He has recently started really "talking". He does Dada and lots of other gibber jabber, I absolutely LOVE listening to him! I got him a Winkle with some amazon credit I had from doing some surveys and he LOVES it as well. He has cut one tooth completely through and working on some more! He is growing up so fast! I think he is going to be talking before he is evening sitting up at this rate.

Here are some pics from the last week:

Oh yea I forgot to mention, we got accepted into Inspiration through Art program and photographer Leah Severson is going to be taking Keegan's photographs. I am very excited about him becoming a Little Hero. Its a great program, you should go to the website and check it out!

Anyway, I will update this weekend when we are getting the intense chemo at Riley!
Thanks again for all the prayers and support, our Facebook is over 1,000 strong and growing, I am amazed!
Love you All!

Wednesday, June 23, 2010

Fiction vs Reality

I have had so many ideas for the past 9 months of how our summer this year would be spent. Of coarse in my fictitious world I would be working and Keegan would be in daycare. He would spend his days with our sitter Amanda and on Thursdays with my sister Abby. He would spend lots of time outside where he would play in kiddie pools or cruise through 4 foot pools in the cutest of floats. We would spend many afternoons and weekends at our local zoo and splash park. A trip to Holiday World & Splashin Safari would be a definite must where my sisters, mom, Laura and I would hang out with Keegan in the Kiddie area all day while the BIG boys rode roller coasters and did the slides. He would be slathered in Aveeno Baby sunscreen and wear really cute hats to keep the sun off of his face. We would take evening walks with Daddy, Duncan and Lexus around the neighborhood and into the park. He would swing in his Little Tykes swing and play in the Little Tykes turtle sandbox momma got him really cheap at a yard sale. 

We would enjoy watching the fourth of July fireworks together as a family down on the Evansville Riverfront. Still in fictitious world we would go shopping for a 9 month suit or tux for Auntie M's wedding on July 24th. We would be introducing new foods and exploring new worlds all while getting therapy from the wonderful Patty Balbach. On July 24th, in my fictitious world, Keegan would be able to attend Auntie M's ginormous wedding and meet family members he has yet to see, he would enjoy the day with dancing with mommy, daddy, and grandma of coarse!

But then REALITY smacks me in the face. None of this will happen this summer  Okay so some of this could happen this summer but in a very different fashion than I ever dreamed. Instead of lazy afternoons and weekends being spent at the local zoo friends and family we will be on the fifth floor of Riley Children's Hospital in the Children's Oncology wing. I will be able to take him to the zoo but not without masks, supplies in case his G-Tube was to get pulled out, and more meds than you can ever dream. Instead of applying sunscreen to my little guy I am rubbing oil on his balding head because its so dry and watching to make sure he doesn't cut himself and cause an infection his little body wont be able to fight.

No water parks for us this summer, heck he can't even bathe. Between his central line and its dressing and his G-Tube that goes directly into his gut the poor guy can't even do one of the only things he loves; take a bath and splash around.

Instead of hats to keep the sun off we are putting doo rags and bandannas on his balding little head so stupid people don't ask us a bunch idiotic questions. I do hear we might be able to enjoy some fireworks from the top of the hospital when we are there in a little over a week but its not the same. We will miss our annual cook out with good friends ReXx and Laura, Shannon, Aaron and Silas, Dave, Angela and Baz and the chaotic trip down to the Evansville Riverfront to view the fireworks spectacular over the water to music.

Our therapy regimen is completely different than at home and it seems every day we have a new therapist to get use to and visa versa.

Instead of cute pictures in the sun I have dull pictures from hospital rooms with limited light and dreariness.

I know this all sounds like a pity party, and that was not my intention is writing this blog post. I just feel like so much has been taken away from us already! I see pictures on Facebook of little ones around Keegan's age swimming and playing in the sun and I am jealous. I want that soooo bad its not even funny. I know he is where he needs to be getting the attention he needs to get but how I wish this had all turned out differently. In my fictitious world when we got flown to Riley on Mother's Day we got the bowel obstruction diagnosis that was originally given, we had surgery, and we would be done, PERIOD. Our biggest worry being his developmental delay but in reality that is not how it panned out and here I am with a beautiful almost bald baby boy fighting for his life! Oh how I wish things were soooo different.

Sunday, June 20, 2010

Father's Day 2010

There are little eyes upon you,
And they're watching night and day.
There are little ears that quickly
Take in every word you say.
There are little hands all eager
To do anything you do;
And a little boy who's dreaming
Of the day he'll be like you.
You're the little fellows idol
You're the wisest of the wise,
In his little mind about you
No suspicions ever rise;
He believes in you devoutly,
Holds that all you say and do,
He will say and do in your way
When he's all grown up like you.
There's a wide eyed little fellow
Who believes you're always right;
And his ears are always open,
And he watches day and night.
You are setting an example
Every day in all you do;
For the little boy who's waiting
To grow up to be like you.
You are the best father a girl could ask for for her son.
You are the best father a girl could ask for when we are faced
with the situation we are faced with. You do a wonderful job
providing for us and loving us unconditionally. You are the best
,and I KNOW without a doubt, we will be celebrating Father's Day 2011
with a Kee that is in remission!
We Love you Daddy!
Beth & Baby Kee

Tuesday, June 15, 2010

Joanna is hosting this shindig for us.....

Joanna over at Raising Madison, is having a little fundraiser for us, she has set a specific goal in her mind and would really like to obtain her goal, I am not trying to be pushy OR ask for your money because many of you are already helping in more ways than I could ever imagine. But if you could check out what she wrote and what is being given away, I think you would really like it! Please read her ditty below....and if you feel so compelled.....

Help! For Ryan's First Father's Day

Ryan was nominated by his best friend for this Father's Day Giveaway and would love to see Ry make it into the top five. Please see what he just wrote on Karing for Keegan Facebook Page.

Ryan still needs your votes for the competition he is in. We have almost 900 members in the group, and only about 100 votes total, there are exactly 5 people in front of him in the standings currently, don't let him be number 6 when he needs to be in the top 5!!

If you want to help and haven't already... do the following...

1. Go to Kings Great Buys Plus Facebook Page and become a fan of the page...

2. Once you are a fan, go to this link.

3. Click "Like" or comment on the picture with Ryans name, picture, and story on it. DO NOT DO BOTH!!!! If you do both, the vote is deleted. Like or comment, not both please.

Thanks everyone for your support! I want to see the same amount of "Likes" for Ryan on the Kings page, that I see as members of the Karing for Keegan group. THANKS EVERYONE!!!

Monday, June 14, 2010

Times Like These......

All night long I have been searching the inter webs for the "perfect" song, poem, lyric, or quote for our situation and our future. It has been hard, I didn't want it to be very negative and I didn't want it to be all about struggle. But I think I found the perfect song for our current moment in time.

I have always loved Jack Johnson; ever since I heard Flake oh so many years ago when I was a wee girl in college. But this song; this song speaks alot about what we have been through lately. The first paragraph simply states:
In times like these
and times like those,
and what will be will be
and so it goes

I am reminded ever day to take one day at a time, sometimes one hour at a time until I feel I can go on. I can't think to far into the future because to be quite honest it sometimes scares the hell out of me. I know to live in the moment and enjoy each and every one, what will be will be and so it goes.

I have always been the kind of person that associates periods in my life with music. That is how it has always been and I have a feeling that is how it will continue to be. Music is a very important part of Ryan and my lifestyle. We spent countless hours picking out all of our songs for our wedding ceremony, reception, and video. They had to be songs that meant something to us and that we had a connection to.

I always find inspiration and hope in Jack Johnson's songs. He is one of my favorites and when Keegan's beats the hell out of this cancer and grows up to be a big strong man like his daddy, I hope he loves Jack Johnson as well.

So, with that said enjoy the song!

But somehow I know it won't be the same
Somehow I know it'll never be the same

Thursday, June 10, 2010

I know what you are thinking....

Where in the heck are the updates? Well I got kinda behind and for the life of me can't actually remember what happened on Tuesday and Wednesday, hospital time is all kind of a blur.  Some days go incredibly fast and some seem to drag on till next Tuesday.

We are officially DONE with the Drugs for the first round of chemo; however, we are waiting for all of his number to drop, which they are in the process of doing right now. Every morning his blood is drawn to check levels. This morning he had virtually NO immune system. He is getting antibiotics via IV every couple of hours along with benadryl because the one antibiotic he is on causes "Redman's Syndrome" which in layman's terms is red rash.

He if vomiting about once a day but Doctor Shiyh is not too worried about it. He is not really gaining weight so as of today he is being moved to 24 calorie specially mixed formula by the pharmacy.  I am really surprised at how well he is taking this. I want to be able to tell him what is happening to him and why but maybe its better this way. He doesn't know how to react because he doesn't know what he is really fighting so he just goes on fighting!

He is such a strong little guy. It seems like every day now he is learning to do something different. He can now turn his head back and forth in both directions when laying on his back -HE COULD NEVER DO THIS BEFORE! He reaches for toys and grabs them and he has learned to hold bottles all by himself! We are making leaps and bounds in development! I am so happy and so are his therapists!

As of right now he is running a slight fever, Keegan usually runs in somewhere in the upper 97's but when our night nurse took his temp at 8ish it was 99.1, so up for him most definitely. We also think he is getting Mucositis which is a side effect of the Methotrexate. I will keep you updated on that as the story develops.....

Anyway I am off duty for the night relaxing at RMH and took some Benedryl to fall asleep, so its off to dreamland my friends...hopefully we get some more good news tomorrow!

Thursday, June 3, 2010

Our New Digs....

We are officially back at the Ronald McDonald house! Our new room is smaller but cozier which I happen to like, feels a little more like "home". We are on the "newer" side of the older side of the house on the bottom floor which we are both very excited about, it has a way homier feel than the side we were on last week. I encourage those of you wanting to send us cards, letters, etc. to send it here rather than to the hospital, less people dealing with it. So with that said (and by no means am I asking for ANYTHING, I just know people wanted an address as soon as we had one) we can be reached at:

Ronald McDonald House
c/o Ryan & Beth Chupp Room 4
435 Limestone Dr
Indianapolis IN 46202

Hopefully I can post some pics of our humble abode tomorrow or something once we get more settled in!

Tuesday, June 1, 2010

First Chemo Treatment Week 1

Its Tuesday June 1st, D-Day in my mind. Today is the day we are starting our chemo treatments. I can not describe in words how scared yet happy I am. I know that sounds VERY odd but I am so scared where this journey is taking us, the unknown has got to be one of the scariest things on this god given earth; yet I am happy to get this show on the road. The last 3 weeks since we found out about the tumor all I wanted to do was get this thing started to keep it from coming back. Now is finally the day and I am scared myself and for my little baby. I am scared at how sick he could get, I am scared for what all these "poisons" will do to him and I am scared for the fight.

We have a TON of people backing us and I am thankful for EACH-AND-EVERYONE-OF-YOU! If we did not have the backing of hundreds of people I would feel very much more weak and unable to face this alone as a small young family.

We are where we need to be, I am rest assured in that. Our Cancer team is very on top of their game and I know they will give us their honest opinions even if its something we don't want to hear!

So  today starts day zero of a very long journey. I am going to try to update everyday as to what drugs, side effects and feelings are happening, I may even upload an adorably cute picture as long as he is feeling up to giving me that $1000 smile :)

Day 0-6/1/10-IV of fluids started, needs to be running for 2 hours before they will start the first round of chemo. He seems happy and is still smiling and giggling. Right now they are running yet another hearing test on him for a baseline study. We are then being admitted to the hospital on the Hemoc floor where we will remain for a month or more.

A little before 9:45 on day one the nurse came in and gave Kee anti-nausea meds, one of the chemo drugs given tonight has a side effect of nausea. Right after that ran through his central line she started him on Vincristine , it lasted approximately 15 minutes, then she flushed it with saline and began running the scarier of the two drugs Cisplatin. He will be on Cisplatin for 6 hours through the night. Then off drugs, except IV's all day tomorrow and start another round tomorrow evening around the same time.

I called the Chaplin in to say a quick prayer before chemo started but I guess he/she was off somewhere else cause the never answer the page; they best not show up here at 1 am when I am finally trotting off to sleep and Keegan has been sleeping for hours..

**On a side note, while we were waiting to be admitted Keegan did manage to pee through his diaper onto my crouch and made me look like I peed myself. It was quite lovely....thank goodness for black gauchos. Oh and I still have not changed because the boxes of my clothes are still in the car. THANKS :)

Tomorrow is a new days, lets see what is in store......

Day 1-6/2/10-Today has gone fairly well. When Keegan and I decided to wake up; whenever that was...I am not really sure....we noticed he looked a little puffy. He had been given fluids all night and they settled on one side of his face. He acted normalish almost all day! I was VERY happy to see that. He ate and peed like a champ-Let Me tell you! Dr. Shi was very happy with how well he took that first round. I tried to feed him around 8ish and he acted like he has an upset tummy; not finishing his bottle and gagging a little so I had the nurse give him another type of anti nausea medication and he passed out....meanwhile mommy and daddy got a room at the BIG HOUSE-no not the jail, we are getting settled in back over at the big Ronald McDonald house a few block away. Its our home away from home.

Tonight is actually considered day 1 of the chemo with day 0 being the first round. Tonight was a much sorter cycle. This one only is lasting 3 hours vs. the 6 last night. Tonight he got Etoposide and Cyclophosphamide. Because of both of these drugs, he is also being given Mesna which helps coat and protect his bladder from damage done from these drugs. He is passed out and sleeping well, for the 2 hours he was on Etoposide he had to have his blood pressure taken every 15 minutes because a side effect is a low blood pressure. Usually this upsets him and wakes him up but the Ativan knocked him out! He needs a good nights rest though, he has been a trooper! Look what we did today!

He sat with Daddy and had some breakfast!
*Notice the mesh on his belly circa 1980's body builder top, it helps him NOT pull out his G-tube or central line.

Got some smiles after therapy, which is a RARE thing!

And ate dinner with momma!
Today was a good day, I know they all won't be like this but it sure would be nice, you can hardly tell he is a cancer patient!

Day 2-6/3/10-Today started our REALLY bad. I fed Keegan about 6:30 am  and almost immediately it all came back up. I am not a big fan of puke but really when it's your own kid it doesn't matter all that much. After we got him all cleaned up mommy waddled her puke covered self into the glass elevators, down through the main atrium and out to a car where Ry was waiting for me. I drove back to RMH, promptly took a shower and then decided it was nap time; you see Mrs. Snorey McSnorester I was talking about got worse and worse through the night. I finally had to turn on the movie Footloose but every time a song would come on I would find myself waking up and singing it.

Keegan threw up one more time today, so they ordered up some more anti-nausea meds and we continued on through the day. Aunt Abby came to visit. He slept alot today but Aunt Abby did get some cuddle time! Abby and I also decorated his room all beautiful like (and if you want to send anything else to decorate his room with please do, we could always use a change-we are here for awhile!).

Chemo again started at 10:00 with more anti-nausea meds given a half hour before. He was on the same drugs as last night, Etoposide and Cyclophosphamide. He also has to get Mesna for the next 24 hours to protect the lining of his bladder. It's getting a tad (teenie tiny) bit better every night when the hang the chemo, not as hard as the night before, am I getting used to it already?

 Tomorrow he will get a catheter and some different kinds of chemo....on to day 3....We Charge ahead with vigor....

OHHHH btw the Governor was on the floor yesterday visiting a patient-whohoooo!

Keegan and Aunt Abby

Sleepy baby

Go Team Keegan!

Thanks to the Rexing's and Wilson's

Our Room with a view of IUPUI

Its Friday, Day 3 6/4/10-Ry and I had breakfast provided by a local church at RMH this morning, it was a good way to start the day! After that around 9ish we headed to the hospital to be with Baby Kee. The day went pretty well. We were told by our day nurse that later that day or early evening Keegan would be getting a catheter placed because the chemo he would be given that night if left too long in his diaper could cause sores on his bum and manly parts. The drug he would get later that night Methotrexate, is also the drug that causes sores in the GI tract that can take a few days to appear, I am crossing my fingers that that doesn't happen because I DO NOT want to find him via G-Tube. 

We had some biker ladies come visit us today! The Miracle Ride is this weekend in Indy and thousands of bikers are in town to raise money for Riley! The actual ride is Sunday but some ladies from the southern bikers club came and brought Keegan a Do-Rag, blanket, teddy bear, book and backpack! It was really neat, too bad he AND Ryan were both sleeping!
Nothing else too exciting; they started the Methotrexate around 10 pm, after they had to re-do his catheter because it was leaking (not big enough). The Methotrexate was a BRIGHT yellow and I watched it go into his veins, and eventually come out a lighter color in his urine, gross I know. But they also have to monitor his urine to make sure the right amounts of this drug are actually coming out of his body. He will get another drug to help flush it out tomorrow night. Then we wait and watch for all of his counts to drop.

We had a male nurse last night and just for the record I have decided I really like male nurses. This is the second one we have ever had in our visits to Riley and they have both been wonderful! He explained everything to me like the nurse we had had the past 3 nights. He wanted me to ask questions so I knew what was going on and comfortable with everything.

I just ask that everyone keep the prayers coming, the rest of this month will be hard because he is VERY prone to infections since his immune system is being depleted!

Stop and smell the flowers!

Hangin with Pup Dog!

Day 4 6/5.10-Today started out pretty good, no direct vomiting or anything. We continued to recover from the Methotrexate by receiving LOTS and LOTS of IV fluid. They monitored how well it was passing through his kidney's by testing his urine a couple of times a day (he still has his catheter in).

The day seemed to pass pretty quickly, for hospital time; which we all know is extremely slower than normal time. He was in a great mood almost all day and was just a joy to be around (not like he isn't every other day of the week!). He was talking up a storm, at this rate I think he will talk and have a conversation with us before he is able to hold his own head up!

 He continues to take IV fluids but also is eating quite well, the nurses and doctors seem impressed that he can still take food orally. Luckily the Methotrexate hasn't reared its ugly head quite yet and the mouth sores have yet to happen.

Some of the bikers for the miracle ride came up to the cancer unit today. One of them being our friend Shaney's cousin. Her and her husband stopped in and gave Keegan and cute Harley Davidson Beenie. He looks like a little biker with it on!

Last night he got Leucovorin. This drug basically exists to help keep Keegan's Healthy cells that are being attacked by the Methotrexate healthy and strong and basically stops the attack. So his urine and blood are still being monitored to make sure that Leucovorin is doing its job.

Here are a couple cutie patootie pics from today:

Baby's Got Mommy

Mommy Loves her Baby

Chewing on Aunt Laura's Gift-Num Yummy!

On to Day 5!

Day 5 6/6/10-Today is Miracle Ride Day! Yea! Mom was coming up at the crack of dawn to be here for it. The Bikers were coming by the ROC (Riley Outpatient Center) between 11-12. We got baby Kee all ready put him in his "barley used" stroller and wheeled him and his IV pole down stairs 5 floors in the glass elevators then all the way out to the ROC. He had to have a mask on of coarse because any time the cancer patients step off the floor they have to wear a mask. When we got down to the correct area and got a seat, little did we know Keegan vomited in his face mask! I felt so bad for the little guy. SOOOOO we turned around and took him right back up to the 5th floor to get cleaned up.

He had a pretty good day otherwise, he did develop a pretty nasty rash on his abdomen an diaper area. We think it was from the Leucovorin that was given the night before. The rash looks really really painful. Its bright red, hot, sand papery feel and just plain nasty. Our nurse gave him a nice dose of benedryl that seemed to stop they itching that Kee was having.

By Mid afternoon Ryan let me know he was going to go home and "try" to work for a couple of days. I felt badly for him because I knew he didn't want to go and leave us but we can't do without his income and insurance these days. My hope is that we can settle into a routine once this first round is done and Ry can actually get some work done either in Keegan's hospital room or in our room at RMH since we have a nice desk decorated with pictures of family and friends.

Mom decided to stay the night with baby Kee which meant I got to go back to RMH and get a good nights rest! God Bless my momma! We had another great Nurse Renae, she rocked!

Today was pretty uneventful, we are just waiting around for the Methotrexate to clear his system and his counts to drop.....we will be here a while!

Happy Boy!

Those Eyes!

The Cutest Harley Dude you ever did see!

Rockin' the mask!

Day 6/7/10-Today started out pretty well, Ry had went home yesterday afternoon, mom stayed with Kee so  I could go back to RMH and get a good nights rest. I woke up super early (5:15) drove moms car over to Riley where she met me to go home. I headed up to Kee's room and fell asleep in the chair bed. When I woke up around 9 or so, our nurse Cathy came in to inform me that we got our own private room! Yippee! It's what we have been waiting for for the past couple of days.

I packed up all of our decorations, blankets, toys and "stuff" and prepared to move right next door to the private room. I immediately began moving the room around how I thought it would best fit us and started to put up all the decorations. Cousin Pam from Lewisport sent us some twirly sparkly decorations to hang from the ceiling so when Kee is laying on his back he has something to look at! Such a great idea! She also sent some die cut shapes of Noah's Ark and the animals but I still have yet to find a place to put them, they are way cute though! I need to take pics of the new room ASAP so everyone can see! We even have our own private bathroom!

The rest of the day went pretty well. We did some physical therapy here in the room and the nurse got him off of all his IV's for the day and I took him for a stroll around the unit. I think he enjoyed it!

Later in the day I decided to head back to RMH to get some laundry done and dinner was going to be served at 6. Went back started 2 loads of laundry and took a nice hot shower. By then dinner was ready. I headed over to the kitchen and had roast and potatoes with some cake to top it off! I am so grateful for all the churches and families that donate their time and make dinner for the house! It really helps me feel more at home. I hope one day I can pay it forward and prepare meals for the RMH at home in Evansville!

After dinner I headed back to the hospital to spend the evening with Keegan but when I got to his room he was gone and so was his stroller! I didn't completely freak out at first but I did decide to take a walk around the unit to see if I could find him but to no avail. I came back in the room and waited about 5 minutes, surely whoever borrowed him would bring him back.....but NO! So I went on the look out again! This time I found him hanging out at the nurses station. They just kept going on and on about how cute he is! Made me feel good :)

When we got back to the room I played with him a little while in his stroller and then got him out to hold him for a little while; I don't get to do that often since he is hooked up to lots of machines.  After about 5 minutes or so he started to vomit and then again and again. Luckily his nurse was in and helped me to catch it and get him in bed and cleaned.

A little while later we headed to bed, no other meds scheduled for the night except his usual Keppra for seizures and his Nexium. I was sitting in the chair bed watching a video on blood (parent education stuff) when all of a sudden his machines started beeping. His pulse ox dropped from the 99/100 range all the way down to 79/80. I FREAKED and paged the nurse. The on call doctor came in they said they couldn't rule out a seizure since I had a hard time waking him up but it was then that I decided I needed to sleep my his bedside. Hoping for a better day 7!