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!



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

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......

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

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

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