Friday, December 31, 2010

11 Things about '11 that I am excited about!

This year, instead of a post like Last Year's; which was neither sad or happy, it just was, I want to focus on the things we are looking forward to most in 2011. While 2010 was one (for the lack of a better word) HELL of a year we are hoping to put that behind us and leave it a distant memory. So with no further adue our list.

Top 11 Things for '11

11. Visting more family out of town

10. Play dates with friends when he can actually leave the house

9. Weight loss before getting pregnant (see #3)

8. Finishing my schooling and getting a medical transcription job to work from home

7. Keegan walking and Talking-although first we have to crawl

6. Less trips to Riley and more trips to fun places like the zoo

5. A neice or nephew to grow up with Kee

4. Starting my crafting business-Kee to My Creations

3. Baby #2 being conceived

2. Trip to Florida with our Family

1. Health and Remission

So here out with the old and in with the new. While this year has proved to be one of hardest of all of our lives, I think it has made us the people we are destined to become. It hasn't been easy and I wouldn't wish it upon my worst enemy but it is what it is, here is to praying 2011 proves to be healther, happier, and easier than 2010 was!

Found this quote and I think it is perfect for our New Year's Montra:

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
- Albert Einstein

With Love!


Wednesday, December 29, 2010

Friday, December 24, 2010

Merry Christmas!

This year I am exceptionally Merry. I can't tell you that in the past I have been the same. It has been years since I have felt the Christmas spirit, and I can tell you EXACTLY why this year is different. We get to celebrate our Christmas AT HOME with our family, as a family, and Keegan is here.

I started my shopping rather earlier than I ever do. There are probably a few factors for that, one being we didn't know when we would be "home" from the hospital and for how long. Also because I needed to budget what and how I was going to spend my "allotted" amount. I was also stuck in the hospital with Keegan for 6 weeks straight then two weeks at RMH with nothing to do but watch TV and cruise the Internet. So I think it was around July or so I started picking things up. First it was a T-shirt here or a mug there. I found GREAT photo deals on Snapfish, shutterfly and Vista Print and also free samples from some of my favorite blogs that came in handy for stocking stuffers. I have definitely learned how to be thrifty this year.

With that said, since I started so early I also got done exceptionally early which has really given me a chance to not stress about the gifts and getting them shipped to our families but concentrate on what Christmas is all about and enjoy being home with my husband, son, mom and sisters (and my brother in law too of coarse).

I found a great website called freecycle.com. Evansville happens to have one and I have begun giving away things left over from our charity yard sale to people that could and need this stuff. I found a lady collecting for our Rescue Mission (its a homeless shelter for men). I found all the coats I could, Ry cleaned out his closet, I gave all our million hospital pillows we took home, spare blankets we had accumulated, and I cleaned out our pantry so these gentlemen would have some food. It was amazing to be able to give things that we no longer had use for to people that really needed it. This is the email I got from the worker lady that picked the stuff up on Wednesday:

Thank you so much for all the goodies.   Several pillows and blankets, 3 coats, and a few other things all went out in the first few minutes we were open!   The people were so thankful to get the pillows and blankets.  And the coats will definitely keep some of them warm!   The food will come in handy for the food baskets we give to those in need. 

Folks like you are a blessing and allow us to do what we do.  Please thank your husband and friends for the donations also.  God bless you all.  Have a wonderful Christmas and a healthy new year.   You have certainly carried out the true meaning of Christmas with your donations.

If we can be of any help to you, please let us know. 
 
I in no means did this to get recognition, I just wanted to share how good it felt to help others in need. Last year my family had decided that instead of buying for one another which can, and for some reason always get out of control, that we would adopt a family. Well we threw that idea out the window when Keegan got sick because well, quite frankly we have had the year from hell and we thought we deserved to have a good Christmas. But I think God, Santa, Jesus, or the Great Divine thought otherwise.

I came across this post that a friend shared on facebook and just knew I had to help. I read the post and contacted Jenny immediately. God had meant for me to read this post and donate b/c within hours I got a donation on our blog for almost the same exact amount that I donated to a mother of 4 children who works at the waffle house for three dollars and something cents an hour. The children's father hasn't been around and she gets no support from him. She wasn't sure how she was going to do Christmas until this post came up. I sent her a Wal Mart gift card overnight for her to spend so the boys would have a Christmas. I feel fortunate that so many people have helped us this year that I just had to do something. Does this make me a saint? Hell no. Does it make me a better person? No, but it did warm my heart in knowing that I helped someone who otherwise would have had to explain to her children ranging in age from 11 down to 5 why Santa didn't come this year. No this doesn't make me better than you or my next door neighbor, it was just something I felt compelled to do and so proud to be a part of. Jenny was actually on Canadian TV yesterday talking about how huge this thing turned out to be. You can check it out on her site.

So with all these things: Keegan being home, families being helped, a roof over our head, and thousands of people around this great country that love and care for Keegan as much as we do-Merry Christmas! It has been one heck of a ride this year and we are so glad we get to celebrate together with food, drink and family!

May you and yours be as blessed and may you have a Merry Christmas filled with Love,

Wednesday, December 15, 2010

Tuesday, December 14, 2010

Do I have smoke coming out of my ears?

Warning: This post is not a happy post, if you are looking for a pleasant puppy dogs and rainbows post please wait utnil tomorrow for Wordless Wednesday.

Now onto a very important topic that I am sure many of my readers will find intresting and very upsetting.
Backstory: My mother in law was fighting Breast Cancer back in '04, it was then that I turned to Susan G. Komen and their efforts to raise money to help my mother in law's case. I donated, walked, you name it I tried to do it in the name of Breast cancer and all the brave women fighting worldwide. With that said, it was brought to my attention by my friend over at The Sartins via The Layla Grace Foundation, some intresting information about The Susan G. Komen Foundation.

The article that Cassie shared, and thus has gone viral on facebook between a lot of my friends is this one.  It goes into great detail how the foundation (that is what we are going to refer to them as for the safe of typing it all out) has gone to extreme lengths to go after/sue small little mom and pop foundations that use "for the cure" in their title or activites.  According to this article on The Huffington Post dot com, the foundation has filed legal action against over a hundred  smaller entities that use the term in their heading, example: Kites for a Cure.  According to this article the foundation came after them hard and heavy. They were fortunate to have lawyers want to help with no charge and fought the foundation to win! (Good for them!!) However, they have to make sure that all there advertisement and such bears that it is for "lung cancer" so people don't think its associated with the foundation. Absolutely. Ridiculous! They can also never use the color pink in anything? But as someone quoted in the article adds, where is the line drawn, what if they use Carnation pink or Magenta for a specific purpose, will the war start all over?

Its also pointed out in the article that the money "the foundation" is using to pay for these big ticket lawyers is money that has been donated to the foundation for research purposes. Although they claim this is only a small percentage of the funds received, when I donate to a certain organization or cause I want to know that it is going for the better good, not to help destroy other charitable organizations.

I.am.livid! There is no other way to put it and I am not going stand for this. From now on, I am not going to particiate in any, I REPEAT any Foundation related events. I also vow to NOT purchase products that give percentages to The foundation i.e. yogurt, kotex and such. You should also be aware of this article. You be your own judge. But I am making a vow to myself and all the people fighting cancer worldwide, like Keegan, I WILL NO LONGER support The foundation, this is appaling and I am not going to stand for it!

Saturday, December 11, 2010

Whats that? You're Home?

We are HOME! I don't know if I can believe it myself but we are here. Resting comfortably in our own home in Evansville. Monday morning we (my mom, myself and Keegan) got up early and headed over to Riley for our 9:30 MRI. I had already pre-packed most of Keegan and I's belongings and were just waiting on the "go ahead" from our stem cell doctors to head on home.


Keegan's MRI didn't officially start until around 10:30, an hour after it was scheduled to start-which was very frustrating. He had to be sedated (of coarse, he always is) and was gone in the back for 2 hours! When he finally came out he was REAL cranky so mom and I attempted to give him a bottle of water thickened with apple sauce. He wanted nothing to do with it, our nurse needed him to take something before she would let us go so we laid him down and let him "rest" with the bottle. He then began devouring it. After we were released from MRI we practically RAN up to the third floor in clinic for our weekly stem cell appointment.

They drew his blood, he finished his bottle, and the nurse practitioner and Dr. Haut came in to talk to us about the "plan". He said everything looked great (minus this nasty skin rash he can't seem to kick) and that "preliminarily" the MRI looked unchanged and stable. This helped to ease my fears but when they did let me know that Dr. Shih still needed to read it along with a radiologists and they would call me, I think my heart skipped a couple of beats, I just HATE not knowing.

I basically told Dr. Haut we were ready to leave and that I had most of the apartment at Ronald McDonald house packed up. He kinda snickered and said, I am surprised you don't have the car loaded yet! So exciting to hear the words HOME. I hadn't slept in my bed since October 16th and it was LONG overdue.

We went home with a Hemoglobin of 8.5 which is "okay" but not great. They told me to watch his irritability and paleness and to let them know if I saw either. We left the HEMOC clinc last Monday and the nurse practitioner was gonna email me our next appointment date and some advice from our nutritionist on weaning Kee off the pump.

Verdict is, We are headed back to Indy on Monday the 12th for a clinic visit, I am nervous because they are saying its supposed to snow on Sunday, I would hope the major roads will be clear by Monday morning but nonetheless, I drive and Impala (no 4 wheel drive this year!). Wish us luck, my lil sister is going with me cause I hate traveling alone.

I have a few special posts coming up and are very excited to share. Sorry this post is kinda dull with no pics. I haven't been good about pics lately. I think its because I still trying to adjust to a new normal.
Thanks for hanging in here and welcome to my new followers I have had the pleasure of meeting through the blog hops I have participated in! 

Talk to you soon!
Love,

Saturday, December 4, 2010

It's a funny thing....

I thought that I would let ya'll know I have been contacted by Overstock.com to feature them in a blog post and add links to some of their products. After which I would be able to provide my readers with a 10% off coupon code. I find this funny and odd all at the same time. I am not a giveaway blog, I am not a "featured product" blog, nor am I a blog that reviews products. I blog about my life. My life that is ANYTHING but normal.

I was contacted by a PR person to do it. I was kinda like "well what's in it for me" because honestly I don't think Overstock has very good prices and have NEVER bought anything from them. I always find better deals at Amazon.com or ebay.com. This particular PR rep never said anything, so, I apologize to all my followers but that is not what this blog is about (not that it would be if I was compensated) but this blog is about life; about living life with a child that has a disability. Not about the next best sale at Overstock.com.

I don't know how she got ahold of me. I don't know if they google pages with so many hits or what. I obviously don't have thousands of followers publicly like some of the blogs I follow do. So I don't know why me but I am sorry, I can't bring myself to do it and whats 10% anyway? 

Hope Everyone is having a joyous Holiday Season, I myself can't wait to get the go ahead to head home, its almost been 2 full months since we have stepped foot in our own home!!!

Love,

Wednesday, December 1, 2010

Thursday, November 25, 2010

Being Thankful


As many of you know, unless you have been under a rock for the last 7 months, this year has been extremely hard and very emotionally demanding on not just Ry, Keegan and myself. But our entire group of friends and family. Through the many ups and down, you-my blog audience, friends, family and strangers alike have helped us along through the good times and bad. I would like you to take a look at the list of things I am thankful for, they are in no particular order-Just what comes to mind!
  • For a great support system-Thanks to our parents, sisters, brothers, nieces, and nephews, aunts, uncles and cousins and great friends-without you I don't know if we would have come through all of this in one piece!
  • For great nurses, doctors, and staff at Riley (as mentioned in a previous post) without you my son would not be doing as well as he is doing today! You have made all the difference!
  • Patty & Katie-Keegan's PT and OT, they have helped him come such a long way while working around our strenuous hospital schedule and reginms-you ladies are angels on earth!
  • Being out of the hospital for the holidays! We were released just yesterday to Ronald McDonald House after being inpatient for nearly a month and half while Keegan's immune system came back up after the transplant. We still have a long road to go but chemo is done!
  • For the apartments at Ronald McDonald House. This is my home away from home. Although it is not home and we are not with extended family on this day of thanks, it does provide shelter, warm water, and a stove for my husband to cook a cute little baby turkey as our "thanksgiving feast."
  • For netflix, it has been one of my saving graces during our hospital stays. I love being able to watch whatever movie or TV series "on demand" instead of the junk on TV.
  • For The Aidan Brown Foundation for providing Keegan with an I PAD. We have started to download fun and interactive apps for Keegan to help with Fine and Gross motor but if you have any recommendations, that would be helpful!
  • For a wonderful Mother-In-Law who went to be with the Lord 2 years ago today. She raised a son that is loving, kind, gentle, a great cook and a wonderful father amongst other things. We LOVE you always!
  • Genetic testing. Labs have been sent and we are waiting to hear back to see if Keegans PTCH or PTEN genes are mutated as to answer the question why him.
  • My mother and sister living with us to help support us during this rough time. Without them we surely would have lost our house by now and possibly other things due to lack of income.
  • All our supporters around this great country of ours and others as well! Everyday I am thankful for your thoughts, prayers, and sweet cards we receive.
  • The drugs that keep me sane.
  • Last but not least this little boy, he is the light of our lives. Even though he is not 100% like many lucky people; we realize this could be worse and thank god everyday for his presence in our lives!


Happy Thanksgiving from Ry, Beth, and Kee!


Tuesday, November 23, 2010

It's Not "Goodbye", It's "I'll "See ya later"

I have a hard time with saying goodbye. I have never been good at it and you would think I would have after years of being moved around the country as a child. But NOPE nothing has ever changed, my heart still aches, tears flow, and there is a void I feel with never be replaced.

Well my friends, there is a time and place for everything and tomorrow our time has come to leave the fifth floor stem cell unit and try to transition back to "normal" life; whatever that entails. But with all this joy and excitement of the good things to come there come heartache.

We have had EXCEPTIONAL nurses during all of our stays at Riley, but this round was a little different. Since we were "in house" for a little over 6 weeks, I have gotten to know the nurses, doctors and housekeeping on a first name basis and consider MANY of them my friends. That is why today and tomorrow have been exceptionally difficult. I told nurse J tonight, "I can't do Goodbyes, I will cry but I can do "I'll see ya later" so we briefly hugged because well, I knew if we embraced too long I would get teary eyed. So as she walked out of our room, It was "See ya later!".

It became a little bit harder when our housekeeper friend JR came in to say "goodbye." I told him I couldn't do it. It had to be "see ya later", he made some smart remark about Keegan's face and how bad it looked and I came back with one of my smart lines about him working (or lack there of) and we hugged. That is when the tears started flowing and I began to think about all the people that I see every.single.day that I am going to miss dearly.

These nurses, doctors and housekeeping staff have been much of our support during this long, long hospital stay. They have gotten to know us and we them. They are like family. They have cared for Keegan like any mom would and truly want what is best for him. They adore his smile, his giggle and the way he likes to suck on his glow toe. They know how I dog on myself all the time for my weight, some know stories about my past and other I have taught a little about who we are and what our hopes and fears are.

I have much respect for all these people, I could NEVER do what they do. They can and do get attached to families only to see them here and gone within a few weeks or months. Like I said, I am not good with goodbyes. I have added a lot of these people to my face book or communicate via text daily. They are my friends, I am confident in saying that and it is NEVER easy to leave a good friend.



People come in and out of all of our lives for a reason, that is a fact. Some come to help you see things clearer, some to lend a hand during a hard time, and some because I believe destiny/fate made it so. These "friends" of mine at Riley have helped to make our journey with Cancer easier. They have let me cry on their shoulder and go out to a random dinner at PF Chang's (JS), they have let me vent about bad interns(H), we have joked about Jeff Gordon(JR), picked up Starbucks for me on the way into work so I had decent coffee (RR), talked about life in general and how we think we were separated at birth (MP). I am going to miss all of you even if I didn't mention you above!

So tonight my Riley friends, as I lay my head down on my all to uncomfortable cot, and as Keegan snoozes away in his hospital bed to the glow of the hallway light know that each.one.of. you has touched not only me but my family. You have made a very big difference in our life. We love you and always will. I hope to keep in contact with all of you and visit when we come up for clinic appointments. You are hands down the best group of people I have had the pleasure of knowing and taking care of my child.

So tonight friends, it's not "Goodbye". Tonight is "I'll see ya later" because in the words of Richard Bach:

Don't be dismayed by good-byes. A farewell is necessary before you can meet again. And meeting again, after moments or lifetimes, is certain for those who are friends.
 
Love,
Beth
a.k.a the wacky mom is Room 5162B

Wednesday, November 17, 2010

Precaution: Enter at your own risk

We have some funk going down in Room 5162B. Some serious F.U.N.K! Yesterday, what we previously thought was "baby acne", suddenly became a little more serious.

It was a normal  morning, well normal for me for the last 4 weeks. I woke up to sounds of Kee talking in his hospital bed. When I went and checked him out, low and behold the left side of his face, and mainly up along his forehead where his hairline should be was covered with red little zit looking things. When the Fellow and Nurse Practitioner came around during rounds I brought it to their attention. The Fellow thought it was best to test the "bump" by popping them with a sterile swab and sending it off to the lab. These bumps are intriguing because they look to be puss filled but when he burst a few of them open clear liquid came out (gross I know) but this brings me to the more serious nature of the bumps.

So the Fellow tells me it could be one of a variety of things but he is thinking either Herpes (you know the cold sore kind-DON'T BE DIRTY) or Chicken Pox/Shingles. They left the room telling me that infectious disease would be up to take a look and see what they thought. GREAT, we now add infectious disease to our many doctors of specialty....NICE! AND to top it off, I am alone at Riley with Keeg like I always am when something goes down, it works out nicely that way!

Anyway, infectious disease finally rolls around mid to late afternoon. They come to the same conclusion that the Fellow and Nurse Practitioner did and tell the doctors to run a few more tests on the blood they took and the bumps they popped. I might add they were a little intimidating because all 6 or 7 of them came in the room fully gowned dawned with masks and gloves, you would really think we belonged in a Sci-Fi movie or something.

So these bumps don't seem to bother little dude. They don't seem to itch him, burn, him or hurt. This is a good thing. They did bump up his Acyclovir which he gets anyway because he has antibodies for both Herpes and Chicken Pox in his blood stream; most likely from moi.

(this is the lovely Mandy modeling the drug for us)

So, here we are on the day we were supposed to be heading over to our apartment at Ronald McDonald house stuck in the hospital, (its week 4 day 3-but whose counting) and still in the hospital with an unknown funk.

The Doctor is thinking its Chicken Pox/Shingles since the Herpes test came back negative. He wants to see the bumps crust over before he is willing to let us go because this virus is serious and could get bad quick. He is no longer on Drip Dilaudid just on scheduled every 4 hours which tonight will be bumped to 8 to wein him. So we are just waiting on these bumps to make sure nothing more serious is looming, please pray its not !

Here is a pic (although not very good) of the "bumps":

These are just some, not all of the bumps

Here is to hoping that these bumps go away soon and we have not other more serious setbacks!

LOVE,
B

Wordless Wednesday

Because he rocked out so hard he fell asleep......

Saturday, November 13, 2010

My Lack of Blogging

I have had a lack of blogging as of late, I soley attribute that to the fact that lil dude is getting better and we spend more time playing and learning how to do new things. He is still in the hospital, expected to be released on Wednesday November 17th to RMH where we will stay cooped up in our TINY apartment for 2 weeks. I will have a detailed update soon. But tonight, my feet are propped up, I am watching TV, searching the web and feeling good about going to Katie's Hope Perfect Match Event today. Ry and I both got registered on the national bone marrow registry. I wish I would have known how simple it was a long time ago, I would have done it in a heartbeat.
So with that said, update and lots of cute bald pictures of Baby Kee to come, but for now its relaxation time before Ry heads back to the 'Ville for a few days and I am left as sole caretaker.....
Choi,
B

Friday, November 5, 2010

Prather Adoption Fundraiser!

Two posts from me in one day-WHAT you might ask is going on with this woman.....Well, something very important has been brought to my attention. There are a couple out there named the Prather's that are trying to adopt a little baby of their own. A blogger friend of mine Cassie over at The Sartins is holding a a fundraiser for her IRL friend The Prather's. Please check it out there are a ton of cool things they are giving away when you make a donation. For every $5 dollars donated you get an entry. If you blog or tweet about it you get another entry-This is a couple that is need of some help and you know even though we need it a lot right now as well, I have always said we would pay it forward. SO with that said I donated $20 how much did you?

My Thirty One On-line Benefit

Today starts our online benefit party at My Thirty One. If you feel so inclined, you can make a purchase and part of the proceeds go to Keegan's fund for medical bills and the like. Pass it on to friends and family whom you feel would love the My Thirty-one product line. They have some really neat organizational stuff along with cute bags and totes. Please check out :Our Thirty one Event  and maybe buy some Christmas or Birthday gifts!
Thanks,
B

Tuesday, November 2, 2010

Things I Have Realized in the Last Two Weeks.....

This is a list, compiled by moi, of things deep and not so deep that have come to me in the last two weeks we have been in the hospital (list form of coarse, its always easier):
  1. This is a tough round of chemo (duh, Beth right?!?!) No I mean really-the mucositis, the vomiting and diarrhea is all so much worse this time.
  2. Keegan is on the upswing of things (we think he peaked on Saturday for the worst possible day yet), that or the continuous dose of Dialaudid is finally right and he is comfortable-either way, the days are much nicer!
  3. Keegan sleeps ALOT when he system is on the rebound he has pretty much been sleeping almost for 24 hours now.
  4. I have scene this campus (IUPUI/Riley) in Spring, Summer, Fall and getting ready to see the winter version-how sad is that? I realized this while walking back over to the hospital from RMH and looking down this beautiful corridor between the parking garage and the outpatient center and almost half the trees have no leaves ::insert pouty face::
  5. I am REALLY looking forward to Christmas this year, not really sure why-I haven't been like this since I was a kid but for some reason this year is extra special and I feel like going all out even though we don't have the money (so I won't don't worry)
  6. We have to buy a new tree. Because of Keegan's transplant we can not put the old one up because it previously (before last year) was stored in its original box complete with water damage from one of the basement floods thus causing molding to the box and thus probably causing mold spores on the tree even though we cant see it. So new tree it is.
  7. I am in love with all things sweet. There.I.said.it! I can't get enough. I go to the grocery trying to get food that I can "live on" during the week while mom, Ryan and family are at home and I am here alone with Kee. It never seems to fail, I come back with cookies, pastries, chips, soda and other very bad things-comfort food, maybe......
  8. I am WAY WAY WAY overweight and out of shape and its depressing. After Keegan was born I planned to get back on the treadmill as soon as the doctor would allow, well; Then all his health issues kept creeping to the surface and I kept pushing it back and pushing it back. I need to get healthy, for me and for my families sake. At this point it has to wait until we are released from Riley and home, this place is not conducive for a diet and/or exercise.
  9. I loathe the Ronald McDonald House. I hate setting foot in that place. To me (and this is my opinion and my opinion only and not about other Ronald McDonald houses worldwide) its dirty, dark, depressing and most if not all of the volunteers are not very nice. I have had a women (I think the same one) on more than one occasion be RUDE beyond words. Our bedroom is gross, there is a HUGE stain of who knows what in the middle of the floor between the 2 beds and the shower never completely drains while you are in it showering.
  10. I LOVE my husband. I always knew that I loved him, but being separated for half the week really makes me miss him and spending quality time with him. He is my best friend and soul mate. It aches my heart on Sunday afternoon when he drives 3 hours home so he can work part of the week only to provide for his family-I know that if he could he would be here with us 24/7-I am positive of that-I LOVE YOU RY!
  11. 5 flights of stairs is a LONG way to go up when you are out of shape see #7 & #8.
  12. There are so many wonderful and caring people throughout this great country that care for Keegan. I have been receiving cards on a daily basis from people far and wide. They give me hope, they give me strength, and help me feel like we are NOT in this fight alone; god has given us lots of people to turn to.
  13. The nurses over her on the Stem Cell side are beyond WONDERFUL. In fact I really enjoy the ones I have gotten to know and would consider them friends. That is a good feeling.
  14. I know who my trues friends are, whether that be IRL or the inter webs, you know who you are and you matter to me!!!
  15. My sister needs a good guy, again my heart aches for her to find her soul mate. I hate that she has to go through guy after guy only to find they are either full of themselves or not mature enough to handle a real relationship (by any means). I have really liked the guys she has dated, but I hope she finds Mr. Right, she deserves it!
  16. Although its tough to find the time to blog, I LOVE it, it helps me vent, and gives you guys a peek into our life!
  17. Keegan hates to have his mouth suctioned. He pushes the wand away everysingletime I get it close. Buddy this stuff is better out than in-PROMISE!
Thanks for bearing with me!
I think today is a good day!
B

Wednesday, October 27, 2010

The First Day of The Rest of His Life

My son officially has three birthdays, I know special right! That is because he is special. So his 1st "Birthday" is the day of his birth, September 23rd, 2009. His second and equally important "Birthday" is May 11th, 2010, the day his Brain tumor was re sected in a 7 hour surgery. His third "Birthday" and now just as important as number one and two was yesterday October 26th, 2010, the day he received his own stem cells back in his body to boost his very fragile and puny immune system back up. I won't lie, we are probably going to celebrate ALL THREE every year FOREVER, a little much? Maybe but for us they are all milestones that make us unique and show us what a fighter our little Kee is.

So yesterday was DAY 0. At approximately 2 pm EST Keegan's stem cells arrived on the Stem cell unit via a container that somewhat looked like a beer keg. What are stem cells you might ask? Well, the answer to that question can be found HERE. Basically they are the "mother cells" of bone marrow. They help the marrow to make more cells of whatever type are needed. So they arrived in this:


When all the doctors, Nurse Practitioners, Interns and nurses were ready, they took his bag of cells out of the "keg".

They were inside a metal container inside the Keg frozen so they took out the metal case.....
Then she took a moment to show me that they were "HIS" cells,
Then they are placed in a warm water bath to thaw them:

Getting ready to draw the cells up into a large syringe:

The Syringe with thousands of Stem Cells in it:

Next, the Intern had to get ready by putting on sterile gloves (notice Kee is passed out from the Benedryll, Ativan, Tylenol and Dilaudid used to pre-treat him):

Next is the video of the actual push of stem cells into Baby Kee, I will warn you, its not very exciting till the very end when I go "WAHOOOOOO" Cancel that, its gonna have to wait until I have better Internet connection, it just doesn't want to upload....the video itself is pretty unmonumentous besides the actual significance of the event. He slept all the way through it and a lot after it. Occupational Therapy came in shorty after the transplant and wanted to work with him, sure, you can try it but it don't be surprised if he doesn't want to partake......and he didn't so he went back to sleep and pretty much slept till today.

Happy Third "Birth" Day My Baby Kee, Today is the first day of the rest of your life!

Sunday, October 24, 2010

Thirty-One Online Party

Tabatha Starr over at The 3 Starr Life is a Thirty-one consultant and has offered to have an "online party" to benefit us! Is that not awesome! The online catalogue can be see here. Please let me know if you are interested in purchasing something through our online Par-tay! I will send you an invite and all that good stuff! It is in perfect time for the holidays as everything will arrive before Christmas, so get those pocketbooks out (who uses that word anymore!?!?-my grandma maybe (LOVE YOU)! Order up some Thirty-One product to benefit a good cause-Baby Kee!

Love,
B

Saturday, October 23, 2010

I am happy to Announce.....

I am happy to announce (to the tune of "School's Out for Summer")-

CHEMO'S DONE FOR-EVA
(hopefully)


Sorry didn't think about orientation of the video at the time...to excited!

Love ya'll,
B

Friday, October 22, 2010

I have a Beef with Something!

Can I just let it out?!? I don't know if you guys can handle it but it's oh so true. Since Keegan was diagnosed I have written a couple of news stations, our local paper at home, The Ellen Show, and Hoda and Kathy Lee. I was trying to get the word out about childhood cancer and/or Brain Cancer is such small babies. It is a growing issue that I feel needs more attention and research.

SO....here is my BEEF (no not the cow) NO.ONE.HAS.WANTED.TO.PICK.UP.THE.STORY! They would rather talk about how many meth labs are busted on a given weekend or how a mother is now in jail for neglect after they found her toddler playing in a home filled with trash and no running water. While some of these things do need attention, I feel that our story (although sad at times, I know) is one of hope. One of an online community and people around the country coming together for the good of our family. We have had such response from people saying they are praying for us, sending us a crib medal, prayer shawl, and other encouraging items. I don't understand our media.

I recently contacted 3 local news stations, 3 national news stations, our newspaper, and 3 radio stations. I need help getting the word out about a fundraiser that dear friends and family are taking the time to put together for us before the holiday season. Its sort of a craft fair and sorta an exhibition for people that sell things like scentsy and pampered chef-it's called Krafting for Keegan and is coming up very soon, November 13th. I have only received 2 responses to date and I did this emailing at the bargaining of the week. Both were from radio stations. Which I am so blessed they even responded but come on people, would it hurt so much to do a story on an inspiring little boy who has known nothing but to fight for his life?

It's okay to do stories about Iraq, flooding, and loss of life due to mass homicides but REALLY come on Media, snap out of it, let's give the people of America a story of substance, a story of real life miracles, and the love of people both near a far.....is that so hard?

RANT OVER.....
Love,
B

Thursday, October 21, 2010

Chemo Shemo

Today marks the half-way point of Keegan's last round of chemotherapy. The last three days he has gotten Carboplatin for 4 hours stints in the afternoon. He has done fairly well with the Carboplatin I don't know if it's because he is also receiving an anti nausea med called Emend along with his normal Zofran or if his little body has learned to tolerate it. We are loving being on the stem cell unit; while we miss our HEMOC nurses immensely, they still come visit since we are just a swinging door away!

On Monday, our first day back, Ry stayed with me to get us checked in and left around noon. I set up the room so I felt a little more at home and I hung fall and Halloween decorations (pics to come). Occupational Therapy came and did their evaluation on him and our favorite Chaplin Rebecca stopped by! It felt good to see familiar faces in a unit we were unfamiliar with. Keegan was in a great mood giggling and laughing for our nurse Rachel (she looks like the Rachel off GLEE too!).

Tuesday passed VERY quickly, which is surprising since I was alone. Usually my time spent alone is long and depressing. We got up, I gave him his meds, THEN EVERYONE decided to visit. Our social worker stopped by, our at home coordinator popped in, so did a music therapy lady to introduce herself, we also had our 2 stem cell docs, Cathleen our Stem Cell coordinator, the Stem Cell NP......I hope I am not leaving anyone out! I gave Kee a bath, sponge of coarse, dressed him and we played for most of the day. OT did come in to have a session with him. They worked on turning pages in board books along with lifting flaps. After a little nap we got up and watched The Wiggles DVD. Keegan sat up, assisted of coarse, and watched the.entire.video! I even tried to get him to lay down but he would not have it!!! He wanted to sit up and watch his movie!

Wednesday was also a great day! He was the same ole giggly, bubbly Keegan. This is great to see although I fear that the vomiting and crankiness is soon to follow. Today was his last day on Carboplatin. We had to get a GFR-what is a GFR you might ask well the answer can be found HERE or I can summarize by telling you that its a test where they inject a "medication" into Kee's central line. There is a blood draw at 1 hour post injection and then 3 hours after the initial injection. These draws determine how well his kidneys are functioning and spitting out the bad chemo drugs. He passed with flying colors so his dosage on the Carboplatin didn't have to change (Thank Goodness-momma is not good with change!). Meanwhile we just hung out in our room, entertaining visitors when they popped in and just having a grand 'ole time! I did find out that Keegan thinks the "Oink" snort of a piggy is absolutely hilarious! It's so funny to see him crack up over it!

Tonight Keegan is getting a new drug called Thiotepa, it can cause lots of problems and this is where the worry wart in me is FREAKING out! Thiotepa can cause sterility, but really, that is not of my concern at the moment, call me inconsiderate. I would rather him have a life and be sterile than no life at all! Thiotepa is also very harsh on the skin. He has to be bathed pretty much every 8 hours or so to keep his skin from being burned and to keep it from turning brown. So the Thiotepa was started at 6:30 pm tonight. He had to be bathed at 8pm and will have to be bathed again at 4 am. Along with bathing we have to change EVERYTHING that touches him i.e. blankets, clothes, leads....well you get it. This is done religiously until Sunday-24 hours have the Thiotepa is finished. After the three hours of Thiotepa (kinda a fun word to say) he gets Etoposide or VP16 for another 3 hours. He has had this drug before just not in IV form. This is one of the drugs that was administered at home and given through apple juice. The IV form is a lot more potent, but these two drugs are a lot of the time given in conjunction with one another.

So Ry is on Keegan duty tonight so I can get a good nights rest. It wears on you sleeping in the hospital for days at time. My body has become accustomed to the uncomfortable purple chair bed thing and people CONSTANTLY coming in the room all night long but; a nice, soft, gushy bed is nice once in a while too! I hope to find a happy baby when I get back over to Kee tomorrow! 

Here is to a couple of bendryll, my eye mask, and LOTS of prayers!

Goodnight ya'll
Beth

PS- I have had a few inquires where to send stuff if people wanted to send letter or encouraging words or such. You can send them to us at the Ronald McDonald House.

That address is:
Ronald McDonald House
c/o Beth & Ryan Chupp Rm 36
435 Limestone Dr
Indianapolis IN 46202-2189

Sunday, October 17, 2010

My letter to Keegan

Dear Bubby Kee:

Tonight, as we sit in our "home away from home", at the CandleWood suites, I am relishing in the last couple of hours of a happy, not sickly baby. I only say this because I am afraid of what is to come. I know how crappy you felt with your "regular" regimen and now we are going and kicking it up a notch. I know what is to come, the vomiting, the crankiness, the sleeping all.day, then the transplant. I have NO earthly idea what to expect after that. They tell me you are going to smell kinda funky for 24-48 hours-this should be interesting. The doctor says you could get sick, very sick, although we hope we avoid this.We are essentially rebuilding your immune system since we are wiping it down to 0.  

Tonight as you lay here between Daddy and I in the King size bed, I am going to try to remember your smell, because we all know that once we enter the hospital you get this odd medical/sterile/chemical smell. I am going to try to remember your giggle, your energy, and how you want and need to TOUCH everything. I know this all sounds terrible and sad, but its weird how life changes once we enter the hospital. Its like life for us just stands still.    

Two months is a very long time. Two months is how long we are going to be living in Indy whether that be in the hospital or for the 2 weeks after you are released at the Ronald McDonald house. Two months brings us to the end of November; most likely the beginning of December. This is a long time for us to be away from our home. Our home with the beds we love, the doggies we love and our family. While they will visit us on days off and weekends it's not the same. Its you and me kid, Daddy is going to try to work Monday, Tuesday and Wednesday and come up either Wednesday night or Thursday morning. This leaves us alone about half the week. I am going to do my best to be strong and be the best mommy I can be! I can guarantee you that!

I know its going to be physically hard on you but this is very emotionally hard on me. I am not going to lie. To watch you go through what you are going to go through is hard enough but then having to deal with being away from home, sleeping in an odd place and trying to "relax" and "rest" is hard. I worry about you. I worry if when you spike that temp, that we know will happen, what is it from? What are they gonna do to find out what is going on in your little body? I love you Keegan, and I know as hard as this is on me it is even more on you. You are the one injected with "poison", you are the one that is delayed when it comes to your gross motor skills and just when we are making MAJOR process I know it frustrates you that we are more than likely going totake a few steps back. I know you are going to have good days and bad. I hope its we have way more good days than bad and before we know it we are on our way home!

I look forward to getting you "free" and heading home to be on isolation for 6 months to a year; at least we will be in our own home! I look forward to getting my Keegan back and healthy! I look forward to your hair growing back!!! I am so excited to see what color and/or texture it will turn out! I am excited to go on our beach vacation next summer and see how you react to sun, sand and water! OHHH and that reminds me I look forward to your central line being removed as well as your g-tube! How could I forget that! You will be able to take a REAL bath which you haven't been able to take since May and you used to LOVE them.  When I look back over this paragraph this is what I am going to put my focus into, instead of being sad and depressed that we are in this crappy situation, think of all the good that is to come!

Tomorrow is a big day for us all! Mommy and Daddy as well as many many many people near and far that love you!  Remember that as you continue to fight, we are all behind you! Go Team Keegan!

Some of our Littlest Team Keegan fans!
Ethan & Vincent


With that Baby Kee, I say goodnight!
Love,
Mommy                                    

Thursday, October 14, 2010

Gracious & Thankful don't seem to suffice.....

We have had SO much love and support from the community, friends, family and complete strangers through our whole ordeal. They have helped us raise money for medical bills, living away from home, supplementing the income I lost when my job terminated me and then was denied unemployment, and even just sending up a prayer daily or every other day for our little family's well being and strength through our hardest days.

I can NEVER begin to thank each and every one of you for what you have done for us. It is absolutely amazing what people do in another's time of need. From fellow bloggers (Joanna at Raising Madison ) or to businesses like Absolute Beauty who helped us tremendously raise quite a bit of money in a little amount of time. There are donors both big and small and even if I might not mention you individually like Nicci who sent me a care package during one of our first hospital stays to a little boy I am about to tell you about. I warms Ry and I's heart like you wouldn't believe. While I try to send each and every one of you a personal thank you note, its not always possible. Between what seems like endless doctors appointments and being on the road to Riley 3 hours one way, I won't lie, its hard!

On to this story of Jack. I received a note from my Aunt a few weeks back that there was this little boy name Jack that took up an interest in our cause. His dad works with my Uncle at Fed Ex and began to follow our story when my uncle took bracelets to work to sell for our benefit. Well we received a package in the mail the other day. It was from Jack. He sent Keegan a Vtech Explore and learn helicopter.
He also included a handwritten card with stickers all over it! I opened it and it brought tears to my eyes. This little boy, who doesn't even "know" Keegan has taken the time and possibly his allowance to buy. It just swelled my heart and made me want to write this post. I did send him a picture thank you card , some bracelets for him, his mom and dad as well as a Karing for Keegan T-shirt and a sticker. Just when you think the world is full of people that only care about themselves and don't think to help people who are down, little things like this happen! Jack if you or your parents are reading this, THANK YOU FROM THE BOTTOM OF OUR HEARTS!

Lastly I want to shout out to some other people who have touched our lives being donating, praying, or being there for general support, we thank you! I won't list them all #1 cause I don't want to leave anyone out and #2 because there are quite a few of you. You know who you are so that is all that matters-THANK YOU!

Wednesday, October 6, 2010

Work-ups for Stem Cell

We got home a little over a week ago now. Nothing too exciting there, except for the fact that they released us from the hospital with an ANC=90 (VERY VERY VERY low). We were shocked but happy to finally go home. It was our shortest stay yet and the most tiresome to date. Go figure!

We had our Pre-stem cell meeting with Kathrine and Dr. Haute. It was fairly simple and complex all at the same time. They went over exactly what will happen during our 4-6 week stay (please pray for my sanity). They told us what to expect and OF COARSE like always they turn morose and have to tell you ALL the bad things that could go wrong, my least favorite part. Nothing too too freaky. We left the hospital the same day we had this meeting so Kathrine said she would give us a call in regards to all the pre-transplant testing we had to have.

During the week mom and I started to bake. The Highway 60 Yard Sale was Saturday October 2nd and my cousin helped us get a Karing for Keegan booth at her church. Many friends helped bake items and make candies to sell at our sale, and even though I don't know some of you-THANK YOU! We also sold our T-shirts (which are still available for $15), bracelets (still available for $2, and our car decals ($3) and managed to make over $500! I think that is pretty darn successful!


On Sunday Ry and I made our way to Indy. Testing was to start EARLY on Monday morning so we wanted to make sure we were fully rested. Monday's tests consisted of a GFR (Kidney Function screen)-the inject his with a certain chemical then he has to have a blood draw 1 hr after its injected and then 2 hours after that. We also had more blood drawn for a CBC and pre transplant blood testing.We then went to X-Ray and had an chest x-ray done to make sure he didn't have pneumonia. We then had an Echo and EKG. We got out earlier than expected. We had time to go back to the hotel, relax and nap. During the afternoon we went over to Greenwood and enjoyed a late lunch or early dinner at The Cheesecake Factory . We then went to Barnes and Nobel. Ryan is in the middle of reading a series of books and needed the second one. While we were there I got talked up by a sales guy to buy a Nook. Not know what a Nook is.....go here.....you may just fall in LOVE! After our HUGE dinner/lunch and shopping at Barnes and Nobel. We headed back to the hotel to relax for our packed Tuesday full of tests and heading home.

On Tuesday we had to arrive by 8 am for our Kidney/Abdominal ultrasound.  After that we headed upstairs to get our blood drawn for more stem cell work up labs. After that we headed to the dentist to grab paperwork to fill out prior to our 12 o'clock appointment and then quickly headed down to radiology to squeeze in a CT of Keegan's sinuses (make sure he doesn't have a sinus infection). Then it was off to his hearing test, which had the exact same results as a couple of weeks ago. After this we headed upstairs to the dentist where Dr. O just looked at his four teeth and said "okay." Really kinda pointless but I guess they needed a baseline. After this was one more test, his developmental testing. Dr. Katzenstein played with Keegan while she asked us what he could and could not do. We also had to do a small test on him. All in all he did better than I thought. He is about in the 8-10 month range of what he can do. I was thinking 6 months so I was very pleased. This goes along with the thinking of my mom who has the thought that he was "reborn" the day the tumor was taken out.

All in all these 2 days of testing were not too bad. They went by quickly but we do have more to come. My mom and I are headed back to Indy Thursday night for an MRI on Friday of his head and spine. This scared the crap out of me, I HATE MRI's. Then my sister and I are headed back to Indy Sunday night for a Spinal Tap and blood work on Monday. Then we should be done.

Round 6 of chemo starts on October 18th, I will go into more detail about that in another post but that is when we move to Indy for 2 months or so.

Keegan is generally feeling better, he vomits every now and then but we can tell he is on the up and up. He is a little more active than he was and it LOVING his new formula that we get to add instant pudding to! We had him weighted and measured on Monday. He is a whopping 24 lbs 4 oz and 29 1/2 inches long. Well that is about all for now....Just wanted to update everyone, THANKS FOR ALL THE SUPPORT!

We LOVE you!

Friday, September 24, 2010

Keegan is One!!!!

Oh what a year it has been. I know everyone says that the first year has flown by and I am sure they will continue, but with our constant trips to doctors, specialists and tests I feel our year has gone by way faster than usual! I will be updating this post this weekend to include some more birthday festivities we will have tomorrow. We are still at Riley waiting for his counts to rebound from this current round and then we should be able to go....with that said-Keegan LOVES cake!

My mom and two sisters along with Ryan's Dad and Aunt Ruby came for his birthday festivities on his actually birthday which was September 23rd. We had cupcakes delivered to us all the way from French Lick Indiana from Mrs. Alyssa from ABCupcakes.

On Saturday the 25th we celebrated with Uncle Bret, Laura and Michael, Grandma, Aunt Abby, His great Aunt Sofia and Uncle Tom along with his second cousins David and Sarah, Aunt Erica and Uncle Steve and Zack, Caden and Ridley. Our friends Ida and John from Fort Wayne also came down to spend the day-Uncle ReXx and Aunt Laura showed up a little late but we still love them anyway, they were walking in the Race for the Cure in Evansville.
Ryan and I decorated his hospital room as best we could to look "birthdayish". I bought 2 HUGE balloons, and by huge I mean bigger than Keegan himself, my mom brought 4 and Childlife gave him 1 with the birthday presents they gave him. So our room is FILLED with Balloons!

Here is a slide show of his celebration on his actual birthday:


We had a lot of fun! Even though his birthday was not what we had expected it to be, we celebrated as best we could! It helped that friends and family both near and far made the effort to come to Indy to celebrate our Baby Keegan's One Year Birthday.

Our last year has been ANYTHING but boring. While we have a LONG way to go until he is fully recovered, we are working on it and look forward to another year of firsts (sitting,crawling, walking and talking). While I wait in eager anticipation, I long him to stay a baby for just a little while longer. Here is to year one and how we have made our lemonade out of some very sour lemons-CHEERS!!!!

Friday, September 17, 2010

Busy little Bees we are, we are!

The last couple of weeks have seemed to fly by! Let me tell you that since we have gotten the **Great** news about the tumor not recurring, we have started and finished round 4 of chemo which involved chemo given at home through his G-tube and are now on our fifth round in hospital (intense) chemo. Somethings that have happened since August 30th, the last time I really sat down and hammered out a post....
  • We came inpatient to finish round 4, at which time our stem cell transplant lady came and talked with us. She scared the living daylights out of me! We are going to be hospitalized 4-6 weeks for Round 6, then we are supposed to live in an Apartment at RMH for 2 weeks since we will have to make daily trips to the clinic at Riley. We have to CLEAN and by CLEAN I am talking something out of ET when they hang all the plastic and disinfect the house.....We have to have the couch cleaned the blinds cleaned the vents cleaned....then the normal everyday dusting and disinfecting.....he is then going to be confined to the 4 walls of our home for 6 months! He can't leave AT.ALL! Which also means momma can't leave at all during the day......small price to pay for trying to get to the "cancer free" stage!
  • I guest blogged over at Making Lemonade, one of my favorite blogs and bloggers, Carrie asked if I would do it for her Blogoversary and I couldn't have been more happy with the way the post turned out. Basically its an overview of our entire trip through life with Baby Kee, you can find it here  ( that is the first part, Carrie had to break it up into two parts!) And the second part can be found here.
  • We ordered more T-shirts (in all sizes) and I ordered car decals, if anyone wants one, we are doing free shipping. T Shirts are $15, Car Decals are $3 and we still have some bracelets for $2.....you know you want some...I will even accept the money paypal!
  • We got a little infection in our Button (during round 4 stay we had our G-tube converted to a button). We whisked Keegan away to Riley's ER on Wednesday the 8th, he was admitted, started on IV antibiotics and then released to come back in the matter of 3 days, Whirlwind I tell you!
  • Mommy ordered Keegan's Birthday cake AND won some delicious cupcakes from ABCupcakes out of Frenchlick, we are doing cupcakes on his birthday and the cake on the weekend since more people will be able to come up on the weekend! We are looking forward to celebrating his year of life-and what a year it has been!
  • There was a fundraiser held in NY NY last night, September 16th, thrown by one of my best friends in the entire world. Here are some pics of the night http://tinyurl.com/22lw8gd. I am anxious to talk to her later today and find out how the night went since there was a tornado in NY and all!
For the most part I think I have caught you up to date, I am gonna try my hardest not to let it get this far behind. I hate trying to remember EVERYTHING from the last month! Hope everyone is having a great September and looking forward to the fall and everything it entails!

Thursday, September 16, 2010

**Newsflash**

I stink as a blogger, I am sorry I have not updated sooner, life has gotten away from me and I have been a bad mommy blogger. I am going to sit down tonight and hammer a post out while Keegan receives his last dose of chemo for this round-I PROMISE!!!!
Even Pinky Promise!

Saturday, September 4, 2010

Monday, August 30, 2010

It's Good to Be Back

Today is one of those days, those days that you are very grateful for. I never thought I would say that about returning to the HEMOC floor of Riley Hospital, but yes, it does feel good to be back.

We checked in around 11 am in the outpatient center where we waited for about 4 hours to get fluids and our room had to be cleaned. Then we were hustled up to our home away from home, the fifth floor Cancer and Oncology Center.

Walking back through the double doors onto the unit felt good, I won't lie! Just a mere month ago our prognosis was terminal and our chemotherapy was stopped with pallative radiation being our only way to keep Keegan around longer. But tonight here I am, blogging from Room 26, our little corner room with a view that we have been in 3 times before.

There is something about returning to this place and seeing all the familar faces, hearing all the familar sounds and yes even sleeping on the same horribly Barney Dinosaur Purple chair bed that makes me feel at home. Weird I know, but when you think you have said your goodbye's to staff and fellow patients and their families, it's good to return and tell them the great news.

I applogize for my hiatus from blogging, between our big Rummage Sale that was had in our honor and the baked sale, chinese auction, and cookout we had this past weekend, there was not much time for blogging. Besides that I just want to cherish the great news with my family and my little boy!

We also had familiy pictures taken by the WONDERFUL Jessi Briner of Bee Elle Photography last night. From the couple of pictures I have seen that have been edited I am WAY excited, check this out:

Awesome Right?!?!? Anyway, I am gonna get back to my baby, he is about to start his IV chemo and I am STARVING!

I will update soon, I pinky promise! 

Friday, August 20, 2010

Remember: Doctors are only Practicing

I love all of our doctors a Riley, they have come to be part of our family. They hurt when we hurt and they are celebrating when we celebrate. With that said, can I just make the announcement that our doctors were WRONG. This is not to rub it in their faces but to show you that you should not just take their word for it, the are just practicing. Trust your intuition and go with it. You know how I mentioned back here that we had an MRI and it showed the tumor had grown through the worst chemo regimen possible?

Well, I am here to tell you that MIRACLES do come true! On Tuesday August 17th my mom and I made the long journey to Indy for a 3 hour MRI that performed multiple kinds of scans. We then had an appointment with our Oncologist where they checked him out before he was to start radiation on September 2nd. I knew we wouldn't have answers that day but went home with butterflies in my stomach. Around 8 am on the 18th I got a call from our WONDERFUL neurosurgeon. She knew I was sitting on pins and needles and began to tell me the best news I have heard in a LONG time. She said it appears that the area under suspicion is not tumor at all. They are not quite sure what it is, it could be contused brain, dead tumor, or just something else very weird. She commented that this is the best news she has ever been able to give us and it was sooooo true-Our God is an Awesome God!  Dr. Ackerman said most likely we would NOT do radiation and start chemo back up but that Dr. Shih would be calling me to discuss all this further.

About an hour later Dr. Shih called. You could tell he was very happy with the findings and basically in not so many words let us know that they compared acids from the "regular" brain to the area under suspicion, they were the same-if it was a tumor then you would see a higher acidity in the tumor region. The perfusion scan which showed the blood supply into the brain and surrounding area showed the exact same thing. Not increased blood supply to the area under suspicion.

Wednesday all the miracles and prayers my family and thousands around the country had been praying for  finally came true. Instead of contacting HOSPICE and making funeral arrangements I am now looking forward to chemo, the stem cell transplant and getting his central line and g-tube out. We still have a long way to go but instead of thinking of the short amount of time we have left we have been given and new chance to watch him grow up!

If this post doesn't strike any other chords with you, let it show you that a) MIRACLES DO COME TRUE and b) Doctors are not god and only "Practice" medicine.

Monday, August 16, 2010

Busy Days and Busy Nights!

Since my last post it seems I can't get a spare minute to sit down and write an "update" post. One of the problems could be that I am A.D.D.I.C.T.E.D to Nip/Tuck. In 3 short weeks I have spent all my "spare" time watching Seasons 1, 2 and am currently on 3-I LOVE it, it is my getaway! Or it could be because I am out and about shopping with my sister trying to help her find a white dress or cute white tank for our family pictures that Bee Elle Photography  is going to take....so any who I apologize for the lack in posts, we are enjoying our time at home and LOVE being able to take Keegan out mask less, he likes it so much more!

I meant for this to be an update post, of everything that has happened since the last post BUT instead I have decided that I need to reach out and once again ask ALL my friend, family, and people that LOVE us but have no idea who we are to pray. I ask that if you pray, you pray with every.single.ounce.of.your.being.

Tomorrow is D Day, or should it be M Day....we are having our 2nd MRI tomorrow to decide for sure, 100% without.a.doubt that what is in his brain is tumor and nothing else. They are using the original MRI machine that was used during the original brain tumor diagnosis to compare clean, clear images; why they didn't do this this past time I don't know. They will also be performing a perfusion scan and a fiesta scan to check as to what the tumor is made of and the blood supply (if it really is a tumor). My prayer, and the prayer I hope you all pray for us today and tomorrow, is that what they saw almost a month ago now on his MRI image was just "something" else, not tumor at all. 

We will arrive at Riley to check into same day surgery around 10:30 am Indy time, from there we wait until 12 when he is taken back for an hour and half MRI sedated of coarse, and then we see the Oncologist; but don't know whether he will be able to give us results or not.

I know I ask a lot of my readers sometimes, and I understand if you don't pray and aren't religious, but I am praying, and I am religious, and I want God to intervene and perform his miracle now more than ever-are you with me?

Wednesday, August 4, 2010

The Difficult Journey to a Decision

It was a week ago yesterday that we got the news that shattered our already broken world. If you don't remember check this this post? So anyway, a week has already come and gone. It has been one of the hardest weeks in Ry and I's young lives.  So here is the story and the hard yet best decision that I feel we have made for our young family. I ask that you please don't judge our decision and/or leave me negative feedback as to why we have decided the way we have, until you are put in this horrible situation you can't for sure know how you would feel. With that.....

So after I sat in that lonely conference room receiving the worst new a parent could possibly hear, I had to stew in my juices until I could talk with Ryan. You see Ry was in the car on the way to Indy to spend a couple of days with us after his couple of days at home to work. I do admit I got online (face book of coarse) and confided in two GREAT women who I look up to dearly. Joanna and Karen helped me through the first couple of hours until Ryan could be by my side to cry with me.

After Ry got to Indy we started talking I told him that the MRI showed that Keegan's tumor had grown back. I told him how Dr. Shiy sat me down and explained to me that they are not 100% sure its Medullo anymore and not some form of a REALLY bad tumor. I showed him the drawing that the doctor had done for us showing us our options, these are what our options were/are ( I should add they were stopping chemo immediately and not going to continue the rest of the cycles).....

We could:
  1. Go Home-either with "help" or on Hospice (just for the record I HATE the word HOSPICE!!!)
  2. Surgery-We could go in and try to remove this "tumor" but as shown it will just grow back again and why put Keegan through another crainotomy and the recovery with much higher risk of infection.
  3. Radiation:
    1. Full Brain-NOT AN OPTION-this would drop Keegan's IQ immediately down 15-20 points-making him severe and profound metal retardation
    2. Focal radiation- This radiation would be a beam directed to the specific tumor and try to kill off alot of those tumorous cells.
  4. Oral Chemotherapy-(Maintenance) is what they call it. It would be the oral form of Etoposide (this drug is known to cut blood supply off to tumors.)
  5. Clinical Trials-We could look into clinical trials at any of the larger children's hospitals throughout the country that participate in them. I asked him to look into trials and second opinions at CHOP-Children's Hospital of Philadelphia, St. Jude, and Boston's Children Hospital.
Dr. Shiy also made mention that with all the genetic anomalies that Keegan has he thinks that ( and I am not quoting nor did he say he would every put this in writing) he should have never "lived" past the first trimester and should have miscarried. He has WAY to many genetic things off that don't really correlate with each other. Anyway so the whole time this is being discussed I am thinking its an even bigger testament to Keegan and who he is. He has fought to be here so we are going to go down swinging. I love this quote from Dr. Seuss that my college buddy Jenna wrote on my facebook wall:

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat.
...I'm all ready you see.
Now my troubles are going to have troubles with me!

So we have had a chace over the last week to speak with our neurosurgeon Dr. Ackerman and more to Dr. Shiy along with Dr. Chang the Radiologist out of Bloomington. It has been a very hard decision yet a very easy one, we are not ones to give us, neither is Kee so we have opted not to just go home to "die". We are going to continue our fight and I hope you are there to support us.
Here is the "plan":
We decided we wanted to try the proton beam radiation out of Bloomington Indiana. You can find more information here MPRI. It is going to be 6 weeks of radiation EVERY.SINGLE.DAY. We will be living in Bloomington during the week at Jills House, its in walking distance and seems very nice! It has been reiterated to us and we are keeping it in the back of our mind that if the quality of Keegan's young life is not worth the quantity we can back out of the treatment at any time. This was a relief to hear, just in case we don't want to finish.  This was the easy decision believe it or not...the harder decision lied it the what if realm.....

What if this thing is not tumor? What if this is something completely different? Dr. Shiy mentioned that he was not 100% that it was the original tumor coming back. So he said that we could possibly do a biopsy, my thought was sticking a big ole long needle into Keegan's head, sucking out some of the tumor in a syringe and then testing it.....I was WAY wrong, a biopsy on a tumor that resides in the ventricle would involve another crainiotomy and recovery time which would slow down the chance to get to radiation. He also said we would have a hard time convincing Dr. Ackerman to perform the surgery, he had already talked to her about it.

The next day Dr. Ackerman came by, we discussed it and she said she had talked the situation over with her colleagues and thought it really was not an option thus putting it off the table for us. SOOOOO then my thought (and I said this out loud) was...what if we are radiating regular old brain tissue...that is not good. So the Doctor left and the next day we were presented with another, lets call it, "Do you want to?" So the biopsy was out of the question but both Dr. Ackerman and Dr. Shiy kept thinking about our situation and neither on of them just wanted to radiate without being 100% sure. Answer: MRI's. They are not only going to re perform the one done last week on a better machine but they are also going to do a perfusion MRI (looking at the blood flow into his tumor) and a Fiesta scan where it takes some different images of the same tumor.

I should add we also "added" the oral etoposide to our "plan" after we are done with radiation in hopes that it also helps to kill the food source, if you will, of the tumor.

While I am sad that our journey has come to this, I hold hope that either our Miracle is in the second MRI or the fact that the Proton Beam Radiation is only offered in 6 places nationwide with one being only an hour and half from home in Bloomington. I cherish each day I have left with our baby, we don't know when will be his time but we are planning on fighting like hell and hoping for a miracle.

Because of the "terminal" label, I have applied for "wishes" for Keegan. I want to take Keegan to the beach so he can feel the sand, see the seagulls and feel the warm sun on his face. This is in the works whether it be with an agency or taking him ourselves. We have family pictures scheduled with one of the best photographers I know and we are going to have Keegan dedicated at our church with family and friends surrounding us.

I am still hoping for a miracle but planning on what is to come.....



Thursday, July 29, 2010

The Oak Tree

So Ryan got a card from his co-ed recreational volleyball team on Tuesday before Ryan ever knew what was going on in a conference room on the 5th floor of Riley Hospital, this is what  the card said:

The Oak Tree
A Message of Encouragement




A mighty wind blew night and day.
It stole the oak tree's leaves away.
Then snapped it boughs and pulled its bar
Until the Oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.

The wear wind gave up and spoke,
"How can you still be standing, Oak?
The oak tree said, "I know that you
Can break every branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.

But I have roots stretched in the earth,
Growing stronger since my birth.
You'll never touch them, for you see,
They are the deepest part of me.

Until Today, I wasn't sure
Of just how much I could endure.
But now I've found with thanks to you,
I'm stronger than I ever knew.

Wednesday, July 28, 2010

Miracles Happen Everyday.....Right?

Monday was a pretty uneventful day, we just sat around and DID NOTHING. We played a bit, mommy started the previous blog entry and OT came in. That was until Dr. Shiy came in and told us we were going to get an MRI the next day. He wanted one to see where we were at, I began freaking out OF COARSE, because well, that is just me. I can't help it, its in my blood, I get it from my father. So the rest of the day I began worrying about the next day's MRI. Ry is home still getting a couple of days of work in so I am by myself worrying like its going out of style. 

The evening got a little better, I ordered some pizza for myself and tried to relax a little. Julie was our nurse again, I absolutely LOVE her. She is great with Keegan and we have A LOT in common. She livened up the mood a little and we talked about different stuff, I am definitely a talker when I am nervous! When the sun began to set I did capture some really great pictures of Keegan.




Tuesday came, what turns out to be the 2nd worst day in my entire life.  He was NPO past 6 am so by the time the called him to come downstairs for his MRI he was starving at not happy. I signed my consent, kissed my baby and left him in doctors hands.  Two hours later he was brought back to me but screaming a scream that makes my blood boil. I knew he was in pain. I quickly asked for some pain meds, which or nurse got but then I saw the social worker.......

She came into the room and asked me to join her and our oncologist in the conference room ( I knew it wasn't good).  Sally a nurse from clinic joined us. I sat down (alone, Ry at that point is on his wait to Indy which is 3 hours from home) and everyone sat around me. I looked a Dr. Shiy and said it isn't good is it? and he said, no its not.

I couldn't believe the words that just came out of his mouth, we ALL thought the MRI would show progress, if not a ton, enough to show us we are moving in the right direction. The rest of the meeting is a blur of diagnostic talk, possible treatment options and me repeating "oh my god and Okay" multiple times.

Basically, and I was waiting until all close family was notified to share with my bloggy and interweb friends (not that you guys don't matter I just didn't want family to read this via the Internet).

These words are still hard for me to say out loud and bring tears to my eyes but here it goes ::Big Gulp::

KEEGAN'S TUMOR IS BACK; IT GREW THROUGH THE WORST POSSIBLE CHEMOTHERAPY TREATMENT OUT THERE FOR CHILDREN!

Omigosh, how could that be-I am sure that is what you are thinking, and honestly we are still trying to figure it out. No one knows. We have some options, not to cure him-because at this point that is not possible-but to prolong his life with quality time and love.  I am not going to elaborate on options, these are for Ry and I to mull through and decide, plus we are waiting to hear back from St. Jude's, Boston's and CHOP.

I am a loss for words, I feel like only a miracle can save our baby now. Yes we can try to prolong his life, should we I don't know, am I ready to give up HELL NO! So right now my motto is : Miracles happen everyday!