Tuesday, August 30, 2011

This & That

10 Days is all we have left for proton beam treatment. Can I get a YAHOOOOOOO! It hasn't been nearly as hard on Keegan as I had thought it would. I figured a lot more burns a lot more uncomfortableness (is that even a word?).  He has been such a champ and with only 10 treatment of proton beam remaining you maybe left wondering what the next step is.

For us the next step is going to be metronomic chemotherapy . I am not sure when this is going to start but he can be on it for years. It's low doses of chemo given everyday at home that can be adjusted depending on how it affects him. From what I hear it may take a little bit to 'regulate' his dosages as they are not supposed to make a huge impact on his blood counts and ANC.

We will still go to Riley monthly and have regular scans to see what is going on in that little body of his. I don't think we have any MRI's coming up anytime soon. Radiation is still working in the body for up to a month after it is "finished" so I think they will give him at least a month before we see what we re looking at.

As for his legs and the movement or lack thereof. I am working with him daily with stretching so he doesn't get too tight. Our radiation oncologist holds out hope that one day with intense rehab he will be able to walk again; Dr. Shih is not so optimistic about that. The cancer has done the damage, we have tried to undo that damage and if it can't be reversed we will deal with it. He can still have a great quality of life in a wheelchair, my thought is he still would be here with us! To be clear, we did nothing to make him paralyzed. When the tumor came back int he T9-T10 area it came back rapidly in the spinal cord and damaged nerves and blocked his CSF. The radiation DID NOT make him paralyzed, it was the tumors growth that took that ability from him.

We are also going to be spending more time up at Riley/Methodist in Indy. Dr. Shih wants Keegan to be in an inpatient rehab setting for awhile to regain some of the strength he has lost due to the surgery, tumor and radiation. This will be tough, I am already preparing myself for those grueling days when I know Keegan is tired but for the better good we just have to push through........He deserves to have the best life possible at this point and nothing will stand in our way. I am not sure how long we will be "inpatient" but with intense rehab twice a day I figure at least a month...I could be wrong.

Well, I guess that is all I have to update for now. I have made some great friends here at Jill's House. Everyone is so friendly and willing to help one another, it is really amazing to see how people come together. I have grown to love this place and after our last 10 days will miss talking with all the moms in the kitchen, hanging out in our room watching Elmo and watching the older girls run around the house from the library down to the living room and back......

PS-Thanks for all your words of love and support on my open letter post. I really appreciate everyone who spoke up and solidified my feelings and fighting spirit! For those of you that normally post under anonymous and aren't rude or snarky maybe I will open that back up one day but for now you can find me at Karing for Keegan on Facebook .

With all my Love,

Sunday, August 28, 2011

Open Letter

This Blog is about Keegan and our life with its ups, downs, and everything in between. If you are an avid reader or just found us thank you for being a part of our life and supporting us. I have been stewing over this "Anonymous" comment for almost a week now and have just gotten to the point that I "think" I am cooled down enough to write an open letter to "Anonymous". If you don't know what I am talking about look at the first comment on this post. So here it goes.

Dear anonymous,

Unfortunately after an hour or so of research and numerous question to my blogger friends I stopped looking for your identity and started stewing in the cruel words you wrong on my blog, about my son and involving my family. I made a post of facebook about your cruel post which received 64 comments varying in support and the use of MANY 4 and 5 letter words about you.

(I don't even know if you are gonna read this post, and if you do too bad but I blocked anonymous post from here on out, so if you post, we will have to know your identity-kinda funny how one apple can ruin it for the rest huh).

Obviously you are not a parent and if you are may God bless your children for you lack of support, care, and the will to fight for what is best for them. Just by posting those few words people could learn a lot about you and the kind of person you are. I actually feel sorry for you anonymous because if you were placed in our situation kinda seems like you would miss out on a possibly great life for your child if you are willing to give up that quickly. What you may or may not realize as a parent is you will do ANYTHING for your child, and I mean A.N.Y.T.H.I.N.G, and that means going to the end of the world to make them happy and in our situation save a life.

What you don't know and many of my blog followers probably realize is I don't post every.single.detail about Keegans care plan and what choices we have and what we don't. Sometimes I do though, and when I do its not for you to judge nor anyone else, this is the place I come to tell OUR STORY, POST MY THOUGHTS, and LET OFF MY STEAM. Only my husband and myself along with our close family know what the walk we are walking and help in the decision making. Many families that I am close to with children that have cancer can sympathize, but since each case is individual and no one case is "worse" than the other. So they don't even know OUR walk.

Anonymous you have NO idea what you are talking about and have obviously never met my son. Every person my son has ever met is touched by him and his story. They are touched by his bright blue eyes and fall in love with him almost immediately. He is such a cool kid that if you did ever have the pleasure of meeting him I am sure you would realize just how special he is.

In closing I would like to make something perfectly, crystal clear. Keegan is not being put through hell. Proton Beam Radiation has minimal side effects and, as if its any of your business, our oncologist thinks it will actually save his life and rid him of this cancer. Shame on you for not knowing the whole story and blaming me for "putting my child through hell".  I will say extra prayers for you because there is this lady named Karma and she is a REAL bitch, I hope she visits you one day and realize just how bad simple words can make one feel.

Yours Truly,
Keegan's Momma Bear


Monday, August 22, 2011

We are Here.....B-town that is!

So I know I messaged that I would put our address out there so that if anyone wanted to write a letter or send an encouraging card you can do so. I could use some encouragement these days! So here it is:

Jill's House
C/o Beth Chupp Rm #202
751 E. Tamarack Tr
Bloomington IN 47408

I will be writing a longer poster later in the day but this is all I can muster after little sleep!

Saturday, August 20, 2011

Could it be, The light at the end of the Riley Tunnel??!?

We have been inpatient approximately 4 weeks and 1 day-Whao! That is 687 hours we have spent in Riley during this hospital stay. It has been a roller coaster of a ride coming in from NYC late on July 22nd in an emergent situation to Keegan loosing the ability to move his lower extremities and given massive amounts of steroids. Then went his Stooling and Peeing, the bowel issues that ensured, and subsequent traditional radiation followed by Proton Beam radiation (and being transferred everyday via ambulance for the last 2.5 weeks to Bloomington and back).

Through it all our doctors and nurses have been wonderful as always. We picked up right where we left off and even have met a few new friends. The hospital stays don't get easier per sei but its like coming home. You like to visit and catch up with some of these people and then you are ready to go home. Home is a place Keegan and I have not seen since July 8th, the day we left for Florida, with no inclination that a relapse of his relapse loomed in our near future.

Tomorrow should be the day that we have been waiting for. It should be the day that we are released back into the world that has not stopped although our own world seems to have. We will leave Riley and head down to Bloomington to our new "home" for 4 weeks more of radiation. While I am a little scared of the new experiences to come, Proton Beam is the only way for us to proceed and I will then put on my Big Girl Panties, suck it up and deal with being in yet another new place because we are trying to rid our son of the terrible disease that has taken his ability to probably ever walk again. We want/need/pray (etc) that this saves his life.

As we are loading up our car tomorrow and saying Goodbye to our home for the last month, I will remember that Hope is what resides and Riley and it is what I will carry with me to Bloomington. Hope is what I hang on to as I see the burns from Radiation taking their toll on my sweet 23 month olds spine  and  hope is what I cling to as we embark on yet another new journey because of C-A-N-C-E-R.

Picture Courtesy of : TeriLee Jewerly
Once we are settled in in Bloominton I will give out the address of where we will be staying so if anyone would like to write words of wisdom or send cards of encouragement to brighten our room you can do so. We would greatly appreciate it!

On a side note (and for those of you that don't already know) I am in the process of trying to write a book. A book about family, faith, and most importantly Keegan's fight. If you have any words of wisdom on how to tackle our story or even write a book and get it published in general I would appreciate an email to chupp {dot} beth @ gmail {dot} com .

Thanks for the never ending prayers and love!

Friday, August 12, 2011

3 weeks, Epic Fail, and a New Addiction

As of tonight around 11pm we will have been inpatient 3 weeks folks. Three whole friggin weeks we have been cooped up in our home away from home trying our hardest to eat semi normal and not spending too much money since we have no earthly clue how much this is going to all cost in the end.

When you think oh three weeks isn't all that bad, think about what Kee has endured. He has gone paralyzed, been NPO (no food intake) since July 31st, had 11 does of proton beam therapy which means 11 trips to Bloomington Via ambulance. He has had 2 CT's on his belly 1 week apart. He has also gone from a VERY high dose of steroids to a still high dose for his little body. Family has come and family has gone. Coffee dates with friends have been had as well as a night eating dinner on the canal with 2 glasses of Mascato instead of one. Its been a long 3 weeks and I fully anticipate being here for at least another full week (not to be a pessimist or anything).  Oh and its been three long weeks  of Elmo, Elmo and more Elmo.....if that is what makes him happy at this point, so be it!

So lets get on to my EPIC FAIL, epic fail is defined by Urban Dictionary as-a mistake of such monumental proportions that it requires its own term in order to successfully point out the unfathomable shortcomings of an individual or group (example: Jack: Uh, dude? I may or may not have wrecked 14 Ferraris with my moped after derailing a whole train carrying nothing but kittens and puppies... Jim: Epic Fail, Man. EPIC Fail). This individual or group would be myself.

So here is the scenario: Keeg's is laying in bed watching Elmo while being hooked up by foot to the heart/O2 monitor and also his central line is hooked up to TPN (remember food in a bag that goes through his blood for  nutrients that costs somewhere in the ballpark of $1200 a bag...) YEA that TPN. I wanted snuggled time while watching Elmo in the big comfy recliner in our Stem Cell room. I go to pick him up making sure that I have not "compromised" any of his attachments and lift ever so gently only to snap his line in HALF!!! The TPN started leaking out of its end and bright RED blood spurting out the line that is connected into his heart. I immediately clamp off the heart end so he didn't bleed everywhere and had Anthony yell for my nurse since I was not close to the call button. Our nurse shows up, finds the clamp that flew off slides it on the line that is still bleeding since its attached to his heart and clamps it down. She turns off the pump and we gather ourselves.

The TPN has to be throw.away! I could have kicked myself-welp there goes $1200 down the drain because it could "possibly be tainted". We also had to redo his access port since it was broken and possibly tainted. Our wonderful nurse had no clue how to re access his port so we had to call in another nurse thus making me feel even worse, mind you I didn't actually mean to do this but I still felt bad. Keegs was crying, my heart was breaking and I felt bad on so many levels. So that is my epic fail. Ugh!

So onto my new addiction.......drum roll PLEASE........

That is all!

Tuesday, August 9, 2011

::Pity Party::

We had our CT today of the bowel after 7 days of rest (aka no food for my starving child). The CT showed the problem was getting better but wasn't where it needed to be yet soooooo where does that leave us you might ask.....good question......Stuck in the Hospital till at least next Wednesday if not later. Dr. Shih is starting him on TPN tomorrow evening to give him nutrition since he is clearly loosing weight and if you remember we had TPN back during transplant to supplement the nutrition that he couldn't keep down.

I am just really frustrated that we will be pent up in this little room for still another week while we are waiting for his bowel to heal. I know this is what is best for him but its hard on me. Ry goes back to Evansville during the week to work as much as he can and family comes up on the weekends but just so draining.....enough with my pity party I guess. I am gonna go sulk on my lovely, might I add comfy cot and read Room because Keegan is watching yet another Elmo movie :)

By the way the new Messenger came out and he is in it-right here (pages 6 & 7 to be exact!)

Thanks the for continued support!

Monday, August 8, 2011

Since July 30th....

How is it already 8/8/11? I do not understand! Ugh, times flies when you sit in a hospital room all day and do NOTHING let me tell you!

So since the last time we talked we have had quite a few issues pop up. A week ago today we had a CT scan done after our "regular" radiation over at IU. The CT showed air in the wall of his bowel. The (the doctors) immediately made him NPO (no food) and wanted his bowel to rest for 7 full days. So that started the beginning of the hellish we we have just gotten through.

He wasn't pooping either and that was a real problem considering his bowel was irritated and we had been giving him meds to make him go. We upped the anty on Tuesday and started to give adult doses of Miralax in hopes that we could get things moving, later that night they added Senna to the mix (also a stimulator) but that nothing either.

By Thursday Proton Beam down in Bloomington was ready for us and we were carted down there early in the morning via ambulance. By this time he is cathed with Foley, has IV antibiotics running for whatever is going on in his bowel, and still hasn't pooped.

His first real day of Proton Beam went fine and without a hitch, if you don't count me taking a tumble out of the ambulance upon arrival in B-town. The radiation took a little longer than his normal radiation since they had to do a "dry run" before they turned the beam on. But it was pretty easy, he went under, had the radiation and they called us back before he awoke.

Friday morning came, still no poops. The decided to add another drug to our daily regimen and give it to him 3 times daily ontop of EVERYTHING else he was(is) still getting including steroids. We went to Bloomington and back Friday morning for radiation and all went smooth again PLUS I didn't fall out of the Ambulance! Keegan even got to pick out a toy from the toy wall (since he can't pick and we didn't see anything he could use we opted for a $10 I-tunes gift card to buy new apps for his I PAD).

By Friday night Keegan started pooping. I was never so happy to see poop in my entire life! I was so excited I started updating facebook accordingly and I apologize to anyone who thought this was too much. But when you have been waiting and waiting and waiting for something to happen and it finally does you are just sooooo relived that its happening. I began to wonder in my head if it was because of lack of feeling in the lower half of his body.

The pooping ensued all weekend and as of today I think we are the 11th or 12th poopy diaper. We had Proton Beam this morning and were back at Riley by 1:30 pm. Ryan's brother Scott is visiting from AZ so its been nice to have him around.

We had a mini family reunion this past weekend and his other brother and sister came down with their kids to visit with uncle Scott and to see Baby Keegan. It was so nice to catch up with everyone, all the kids are growing up so fast on me I can't even take it! (I started dating Ry 7 years ago now and my one niece was 1 at the time!)

The plan for the following week is this:
  • Proton Beam via ambulance tomorrow since we are still inpatient then a CT to see if the bowel conditions they were worried about have cleared up. We should then be able to start bottle feeding him again-THANK GOODNESS-he has lost a few pounds over the last week.
  • We are slowly stepping his steroids down which I am hoping will take away some of the moodiness and hungryness.
  • We will be taking out the Foley Cath and doing an in and out cath every 4 hours or so to empty his bladder and make sure its empty.
  • We will continue proton beam this week every day but Friday, they are closed once a quarter for maintenance and that just so happens to fall on this coming Friday.
  • Meanwhile we are continuing to watch his leg to see if he is getting any movement back.
  • Hopefully we will be home this coming weekend and back to Bloomington and living at Jill's house by Monday if all goes well.
If you pray can you please pray for an easy week for us transitioning back to the outside the hospital world and that we can handle all the new responsibilities that have come our way since the tumor has grown so big!

I also wanted to put this out there:
There is a Tupperware benefit being held in our honor
If you want to go to :here
and order Tupperware a portion of the proceeds will go to our family for Keegan.