Just when you think life is semi-normal....

Just when you think "hey this is as normal as normal can be for us" the BIG C word smacks you upside the head and turns all your plans for the weekend into a clustered mess of worry and frustration.

Let me back up.........All last week is kind of a blur in hindsight but it basically included people dropping off rummage sale donations, me picking them up or me meeting them at the storage facility. Very busy week. I picked up our GIANT U-haul nicknamed "Big Bertha" on Thursday and while my sister babysat Keegan I ran around the city like a mad women collecting bigger items that wouldn't fit in a car.

The plan for Friday was to nap when Keeg's napped because we were going to pull an all nighter to set up for the yard sale and then the sale itself was Saturday from 6-1. Keegan (or something within Keegan's system) had other plans.

On Friday when he woke up he felt a little warm. I had just talked with Dr. Shih the previous day, Keegan's counts were still dropping. Dr. Shih suspected he would need blood and/or platelets early week next week. So when we how up Friday and felt warm I took his temp it was 99.7 (which is pretty high for him since he ALWAYS runs 97.6 or so). During the day Friday he was kind of wimpy and whiny but I thought he may just be tired. I took his temp before I laid him down for a nap armpit temp came in at 100.5 and the threshold for chemo kids is 101.0 so I called Dr. Shih and left him a voicemail that his temp was trying to creep up on us and what he thought we should do.

I laid down for a lap a little before 12 and when I woke up a little after 2 and Keegan was still sound asleep I knew something wasn't right. I ran and got the thermometer and took another armpit temp. 101.9 is what it read when I turned it off before it beeped. I immediately grabbed my cell and called the HEM/ONC clinic to get the "teamleader" nurse who could advise me how to proceed.  I was promptly told to get him to the ER and quicly as possible and they would call ahead for me.

We drove to Deaconess in Newburgh, and quickly got a room. They gave him an X-ray to check for pneumonia all the while I just wanted to get him to Riley. Riley finally got in touch with the doctors in the ER and the helicopter (lifeline) was promptly on its way to us. The EMT's started him on Zosan (an IV antibiotic) and I began to cry as I learned I could not ride in the helicopter with him to Riley. We (my sister and I) walked Keegan on his stretcher out to the waiting Helicopter said my tearful goodbye and gave the EMT's my number to call when they landed.

I went home, grabbed a bag of clothes for both him and I, some toys, my computer, IPAD and his favorite blankets and got on the road. That was about  6 o'clock Evansville Time. I was almost to Vincennes (45 minutes away) when the EMT called to tell me they had just landed and Keegan did great in flight). I continued on to Indy, stopped to get food because I forgot when the last time I ate was and kept on trucking.

I got to Indy a little after 9 our time 10 theirs. He was still in the ER and I had to tell my whole story to the 2 docs that were treating him. He looked pretty bad-Pale, whiny and just all together not himself. I wasn't down in the ER for longer than an hour with him than they transferred us upstairs to our home away from home. The Hem/Onc floor.

By this time he was on another IV antibiotic and his fever had come down to the lower 100's. We got settled in with the help of the nurse and PCA (She already had ordered the bottle nipples we need when she saw we were coming in !)

Meanwhile, a massive effort in Evansville is underway to get the Rummage Sale up and together before the start on Saturday morning at 6 am. I hear from family and friends LOTS (we are talking 50 or more people) showed up Friday night to help coordinate the sale. As the numbers of people dwindled my family was there with a few other volunteers setting up through the night.

By Saturday morning more volunteers turned out and well as lots and lots of generous people to make the Rummage sale a HUGE success! I wish I could personally thank EACH.AND.EVERY.SINGLE.ONE of you who turned out to help set up for buy something from the sale but from what I can tell that would be nearly impossible.

So if you are reading this and you were anyway a part of the Karing for Keegan Rummage Sale's success. Know that from the bottom of The Chupp's hearts we thank you beyond expression able words. You have helped my family in our time of need and for that we thank you. You have provided hope that at times through this fight has seemed dismal AND you provided the reassurance that we as a community still really do care about one another.

Keegan and I are still here at Riley. He is currently getting a blood transfusion and IV antibiotics around the clock. I am ready to be home and rest. I am ready for him to feel better and most of all I am ready for our family vacation which we leave for on the 8th of July. To see my Toddler see a beach for the first time will be priceless be priceless, I can feel it.

Then its off to New York to hopefully beat this "SOB" known as cancer into the ground!

With Love from Indy,

Why don't You Sit Down and Pre-Order some Bar-B-Que? ::you know you want to::

I know I am posts lots of fundraising stuff on the blog right now and not a lot of Keegan content, I promise that will come back, there's not a whole heck of a lot to report right now anyway, he is neutropenic, will need blood next week but is otherwise doing well.

A friend of our from church, whom had their own personal tragedy last year is paying it forward and helping us out. They are beyond believe people in life and an a great example of true Christians. They have put together a BBQ fundraiser.

You can go to a website set up called http://www.bbqbenefit.com/ and you can do the following:

You can place an order by making your selections below and paying with a credit or debit card. Payments are processed through Paypal, but a Paypal account is NOT required.

 Orders can also be emailed to orders@BBQbenefit.com and you can pay by cash or check when you pick your order up.

Orders can be picked up Saturday, July 16, 2011 from 11:00-2:00 at the Fulton Park on the corner of Fulton Ave. and Franklin St. in Evansville. If you would like to pick up your order in Henderson, please email us.

Those orders will be available for pickup at One Life Henderson, 1644 Second St. between 11:00 and 2:00 also. You can also simply make a donation to this benefit if you choose not to purchase the Butt or Ribs or will not be able to pick up an order on this date.

Pork Butts-$22

Ribs-$20

Catching up, its what I do best!

It's 10:-7 on Tuesday night, I am drug down and wore out. It has been a long week for the whole family and its getting longer and longer.

On Sunday June 12th we packed up after church and headed to Indy. Keegan had to be to surgery area by 5:45 am. So we drove up, got our cheap rate at the Candlewood and relaxed. Bright and early Monday morning we ventured to our home away from home, Riley Hospital for Children. We signed in and didn't have to wait long until the anthologist came in, we signed off and we talked with some neuro people. Then it wasn't too long after that that the nurse came and took my baby.

The surgery being performed was having his shunt replaced and a new port put in. Dr. Ackerman went in first. She removed his old shunt, you may ask why was it removed? Well, per the protocol for the 3f8 study at MSKCC you need to be able to shut the shunt off so the radioactive antibodies have time to attack the cancer cells in his brain, spine and CSF. Then the shunt will be turned back on and the brain pressure will stable out and return to normal.

After the old shunt was replaced with the new magnetic shunt he had a porter cath placed. I am already in love with this catheter and wonder why in the H-e-double hockey sticks they didn't choose this from the beginning. ::returns from 5 minute google search for a picture of the cath, with no luck:: Anyway, when the cath is not accessed (needle in it) it just looks like what your knuckle looks like when you ball up your fist. When it is unaccessed he can get wet and be a normal kid-LOVE!

After both surgeries were complete we were ushered to the all to familiar recovery room where he was positioned very oddly on some pillows and had just started to wake up. Ry and I were there gently reassuring him that everything was okay. We waited about 30 minutes and moved up to the Hem/Onc floor.

The first night or two we were in a room with a little boy we will call J. J took a liking to Keegan although I don't think that Keegan ever knew he was around but I sure did, he was a loud little 10 year old but happy and otherwise healthy (besides what he was in there for). He and Kee became buddies and when we moved to our private room on Tuesday., J would come by and visit on his way to and from the playroom.

Nothing too taxing happened while impatient Kee got Cyclophosphamide over 30 minutes Topotecan also over 30 minutes. That started on Tuesday Morning after a couple of hours of hydration. In the cancer world especially with some drugs you have to have certain readings in your urine before they can safely give you the drug and since the Cyclophosphamide can do a whopper on your bladder they are very careful with this. They also pretreat with Mesna and then treated again 3 hours after chemo is done with Mesna.

While we were there we had our favorite nurses and some new ones too. We misses our Dear Julie S. who we will be seeing very soon. We had LOTS of friends stop by and say hi! The comment I heard most often was "look how big he has gotten" and "look at all that hair".

We were discharged Saturday and had to start GCSF on Sunday. I hate G, it makes Kee hurt all over and takes about an hour or so out of our day where Kee is hooked up to the pump and we cant really go anywhere. Tis life, this too shall pass.

This week has been semi uneventful for Keegan but I have been busy as a little Bee getting ready for our big Rummage and baked Sale. I have been collecting donated Items for weeks now, I have TONS to go through and set up Friday night, wish me luck, but its all for the better good. I have a ton of people helping me and without them I dont' think this would be possible. We were on our local mid day show yesterday advertising our story and our rummage sale-Keegan cried through the entire thing to the point that I had to take him off my lap and sit him between him and my friend Susan so my Mic was not dominated by cries. (so sad). Tomorrow our local paper is coming to the house to take pics of Kee and interview me about his story and the rummage sale, that should run in the paper on Friday.

I do need to ask for a few prayers. First (selfishly) I pray that everything falls together with MSKCC. I talked with the Social Worker yesterday, she is putting our reservation into the Ronald McDonald house and it sounds so nice! Secondly a little friend of ours that we shared a bathroom with at Riley named Talon needs lots of prayers. He is a PNET patient and his cancer has returned. We share the same Oncologist come to find out through his caring bridge page  but they are searching for options in a bleak situation, so please lift them up in prayer. I also pray that Keeg's will have minimal side effects from this last round of chemo and that our vacay to FL in a mere 3 weeks shall be unaffected :)

I would post some pics (cause we had to shave little Kee's head due to this awful cement stuff they put in his gorgeous hair to keep the bacteria away from the new incisions) Maybe once I get them watermarked I can come back and add to this post. Blood draw from home tomorrow, praying we are all good with platelets and blood and will not need to make an Indy trip........

Thanks for the prayers keep 'em comin!
Love,

Frustrated-almost-BEYOND BELIEF

I know everyone wants updates on Keegan, and that post will come later tonight when I have time to sit down sort through all my thoughts, feelings and emotions of the past week. But right now I want to VENT on something that I don't think is right or fair. I just want to stress these are my opinions and mine only.

So Keegan is 21 months this month, almost 2 right? He has a life threatening disease-medulloblastoma right?!?! He has relapsed and hope upon hope and pray with all our heart the path that we are currently following will keep him cancer free for years to come But I do have a problem.

That problem is all the foundations out there, like a few you may or may not know, that grant wishes to sick and terminally ill children. They have age restrictions. For a nationwide one you have to be 2.5 which we wont reach until March of 2012. Another local wish organization you have to be 3.

I know there are age restrictions for a reason but the trips are for the families as much as they are for the children. They are memories to be made that in some cases are the only vacation memories a family has. I am very upset, made, and frustrated. I know my son would not enjoy Disney, he is not old enough, I completely agree, however; I have been thinking and I believe a Disney Cruise would be enjoyable by all. He could meet the characters, go to the beach and have fun on their private island. The memories made would be priceless yet unless I am LOADED I am unable to make those memories because he is "not old enough".

Ugh, I am just upset and want to cry, most families have a lifetime, we may not and that sucks!

Right this very instant.....

• Keegan is getting IV chemotherapy and it sucks
• I am listening to Laura Story (christian Cd)
• Thinking about my husband and  family in Evansville
• Feel so overwhelmed and thankful for all the people near and far praying, donating and listening to our story.
• I am sad for what we have been through but hopeful for the future despite what doctors say
• I am lonely and hungry, not a good combo.
• am blah.

Thirty-One

My friend Dedra is donating 10% of her proceeds this month to our family for travel expenses and treatment as related to Keegan's care. If you dont know what Thirty-one is you can go to this site and check em out.
They have purses, totes, coolers, wallets, bags, and tons more in lots of cool designs.

Please contact Dedra either through her Thirty-one site or

"The Plan"

Here is the post that EVERYONE has been waiting for-OUR PLAN. If any of you follow me personally on facebook or even Karing For Keegan on facebook you probably noticed I was pretty pissy and upset yesterday. Here is the brief run down of what went down yesterday:

• get a call early morning from the Hem/Onc clinic at Riley (Sally to be exact) asking if I had yet to heard anything from Sloan Kettering or Dr. K. promptly answering NO, Sally said Dr. Shih had been calling and calling Dr. K's office and leaving message with no return call.
• I got REALLY pissy and started updated facebook as such, I then placed a call to Dr. K's office asking what the next step was and so on. I spoke to a girl who collected our insurance info and Keeg's social security number. She said she would give Dr. K the message I called.
• THEN I emailed Dr. K, I wanted to put in writing both my worry and my urgency to get the point across. Asking her to get to me in a timely matter.
• I then talked with Dr. Shih who expressed frustration with getting a hold of the right person at Sloan. We talked about at least knowing what they are thinking so we could do something in the meantime.
• FINALLY at around 4 my time 5 NYC time Dr. K called me. I was shocked and OMGGGEEEEE ish.....she discussed how she wanted the plan to go and explained that she had just gotten off the phone with Dr. Shih. While I was talking with her about what needs to be done to get to NYC Dr. Shih beeped in. I ignored it.
• When the conversation with Dr. K was through I  listed to the voicemail from Dr. Shih, he beeped  in while I was listening to his message. I clicked over and the plan started to take shape.
• He was as relieved as I was to finally have an idea as to what, when and where everything was going to happen.
• So here is the LOW DOWN of the next couple months of our life:

• So as you can see, next week or this coming Sunday, we are heading North to Indy. Dr. Ackerman actually called me after I made these calendars and she said they are doing a small brain procedure and putting in a new Picc Line first thing Monday morning. The Brain procedure will be installing an on/off switch for his shunt so when the drugs in NYC are administered they won't drain right into the belly. They may or may not still install a reservoir, that is to be determined. The PICC line needs to be placed for the chemo next week as well as blood draws and other such cancer/chemo related stuff.
• We have to be off chemo 3 weeks before we can start on the trial which would leave us at July 11 but I expressed to Dr. K that our family trip that has been planned and plotted, saved and scrimped for since last fall is the week of the 11th. She said she has absolutely NO problem with us being in NYC the following week. Dr. Shih also knows how important this trip is to us as a family and is so happy we will be able to do both.

I particularly am very happy with this plan. We get to spend some time in Indy with people with love and who love us. We get a vacation still and we are in the trial. All around I now feel God is listening to our prayers and putting them into action, I was lost a few weeks ago and wondered why........but pieces are falling into place.

Financially this is no easy feat, the Rummage Sale and its components are still on For Saturday June 25th to help raise money for our 2 month stay in NYC. The flights are expensive, the housing is expensive and I can only imagine how much the food is going to cost.

On that note
Love ya'll and thanks for thinking and praying for us!

Rummage Sale

Karing for Keegan Rummage Sale

 We are looking for donations for a Rummage Sale to be held Saturday June 25 , 2011 (tenatively).

The sale will take place in the parking lot of Midwest ENT at 1020 Professional Boulevard.

·        If you have a yardsale/rummage sale of your own we can pick up the remaining items to store for this fundraiser.

·        If you don’t like doing yardsales yourself we will happily take your unwanted/unneeded things for Keegan’s cause.

·        They don’t have to be priced or cleaned, we can do that.

·        We can pick them up in the Henderson, Evansville, Newburgh, Mt. Vernon, Princeton Area. Please email or call Beth at chupp.beth@gmail.com or 812-250-8641

This is for a very good cause. Keegan was diagnosed with brain cancer at 7 ½ months old. He went through 6 rounds of Chemo, a stem cell transplant and on his annual MRI check-up found a new spot of cancer on his spine. After surgery it was confirmed to be the same kind of cancer in his brain and was also found to have floating cancer cells in his cerebrospinal fluid.

He is only 20 months old!

His story can be found at:

www.karingforkeegan.blogspot.com