Tuesday, May 25, 2010

Terrified, Scared, Worried......

So my wonderful boss made a visit to Riley today(and I am not being snide nor snotty-she really is a great person, over the last 2 years I have made friends with her and confide things in her). But anyway she stopped by to see Keegan and to check on us. She also wanted to let me know some not so good news. Because I took FMLA back in September when he was born and you have to something like 26 pay periods before the time restarts again, I only have like 5 weeks of FMLA. After that I am TERMINATED!

Like I have nothing else in my life to worry about! Now I have to worry about insurance, paying bills and the such. Sometimes you wonder why God hands all these things to you at once. I am confident we will find a way to get through. Right now I am not sure how; but my #1 concern is Keegan and getting him well. We have TONS of great people working on fundraisers for us and we are so very thankful for their hard work and sacrifice. Like I said before, and I will say it again, its gonna be a long hard fight but with all of your love, support and prayers we will get through and in the end.....I will worry about a job!

God Bless and Keep the Prayers comin!

Shout out!

So I normally don't do things like this because this is a blog about Keegan and everything we are going through right now BUT Joanna over at Raising Madison was selected as a finalist for the 2010 Scholastic Parent & Child Magazine Blogger Awards. Check out her blog and if you like what you see, please vote for her in the Special Needs Category. She has beyond great with getting the word out about Keegan and ralling the troops per sei and I feel this is the least I can do for what she has done for us. I feel blessed to call her a bloggy friend. You can vote for her through the link below. I will warn you, her daughter Madison is a cutie patootie!
 Raising Madison, 2010 Scholastic Parent & Child Magazine Parent Blogger Awards

Monday, May 24, 2010

Braclets for Sale!

Karing 4 Keegan Braclets are NOW for sale!
They are $2.00 each with $1.00 shipping!
Buy yours today its what all the cool kids are doing!
Email me @ Beth.Chupp@gmail.com for details!

Friday, May 21, 2010

Today is a Good Day

So this morning, we got up, got ready and guess what folks???? I put make up on for the first time in over 2 weeks!!! I know shocking right? I just felt like it would help my day be a little brighter, and while the sun IS NOT shining here in Indianapolis, I feel okay.

We went and picked up a few groceries at Meijer last night for our little bin in the Fridge but this was only after Keegan came back from surgery and was resting peacefully. Surgery went well. It was his fourth in just over a week; but he is becoming a pro. Dr. Ackerman installed a new shunt and cath on the opposite side from where it had been. She didn't want to get anywhere near his newly placed G-Tube in fear of contamination. The new shunt is a lower profile and will not be messed up when he has MRI's or other magnetic type testing. We even got to hold him today since the shunt is now internalized-YEA!

He seems to be getting  little stronger everyday although he is cutting teeth in the midst of all this so that doesn't make for good days.

We just got great news that we will be moving out of the ICU today and onto another unit. This is great news because it means we don't need the more intense monitoring we have had for the last week and a half but sad because we have to go back to the developmental team that "failed" us in the beginning. Oh well, now I know we must just speak up when we think something is not right.

Oncology just came in within the last 30 minutes gave us paperwork on the type of chemo that Keegan will be receiving and explained the process to us. She said they are going to start the inpatient chemo on June 3rd. Dr. Ackerman wants to give him a chance to recover from all his surgeries before anything is done chemo wise.

So today has been a good day, NOW with that said, it is only 2:30 and he has not had his swallow study yet and has not been moved to his new room, so we shall see.

With that,
 Beth Out.....

Wednesday, May 19, 2010

Some Good News!

After a week and a half we are no longer hobo's! We have now taken residence in the nearby Ronald McDonald house. It is absolutely wonderful that we now have a place we can go to relax away from all the noises of a hospital. For those of you wondering about an address to send things to our one here at RMH is :
Ronald McDonald House
C/o Beth & Ryan Chupp Room 43
435 Limestone Dr
Indianapolis IN 46202

** ALSO my sister has shirts for sale go here to see them**
Team Keegan T's

Tomorrow is one more surgery Pray for us all so we can move on, heal and start chemo!

Tuesday, May 18, 2010

Surgery Tomorrow

I have come to dread the word surgery. It's not like I every "liked" it per sei but now it has even more of a bad connotation in my mind. Even though his 7 hour surgery to remove the tumor went fine, every time he goes under I get that dreadful feeling in my stomach and I can't decide if I want to puke my brains out or poop my brains out! Well, tomorrow bright and early at 10 am he is having surgery to put in a G tube. The G tube is going to be the primary mechanism to feed him while he is getting chemo. Because he is still bottle fed and because the chemo will probably make him want to eat less, this is a must have.

I am scared as hell, this is the first step to start chemo. Starting last night they ran a 24 hour urine as a baseline for his Kidney fuctions, they did an echo of his heart today, again as a baseline for the strength of his heart muscle because chemo can weaken it. This G-Tube is a finality in my mind that this is really happening and its not just a bad nightmare.

I am on team Keegan! We WILL win! We WILL beat this! We will not lose this battle. We WILL stay strong! We WILL stay positive! We CAN do this! Through him all things are possible!

Thank You!

I just wanted to extended my deepest Thanks for those of you who have reached out to us in our time of need. We  really appreciate it and value everyone who has taken a minute out of their busy lives to extended sympathy and prayers. We have created a facebook group called Karing for Keegan, anyone and everyone is invited to join and add our Team Keegan button to your profile.

As a small update, we talked to oncology yesterday. We are looking at 6 months, in hosptial, chemo (the most aggressive you can get) and even then our prognosis is less than 50%.

I encourage you to post this in your profile on facebook or blog :
I am on team Keegan! We WILL win! We WILL beat this! We will not lose this battle. We WILL stay strong! We WILL stay positive! We CAN do this! Through Him all things are possible. who is with, post it in your status if you are.....

Keep Praying, we can beat this!

Saturday, May 15, 2010

So here it goes....

It's 4:30 in the morning Indy time, I just fed Keegan 4 oz of formula and am currently listening to him babble and cry. This was a much different story just a few short days ago. I will try to tell you the most concise version possible but we have had many misdiagnoses and MANY MANY tests.

On Tuesday May 11th we had a barrage of tests run. First thing was the swallow study. They sat him in front of a special x-ray machine and fed him a bottle. First let me preface this story by saying as soon as we started moving him he started to vomit. He hadn't had ANYTHING on his belly since Saturday and that was only 2 4 oz bottles so what he was throwing up was really disgusting, at one point I questioned whether or not it was feces. But, back to the story.....he had the swallow study, failed the regular bottle-he would gulp, gulp, gulp, gulp swallow and then part of it would go down the trachea. Tried a thicker bottle with cereal, fail, same thing happened. They then tried a puree, failed that too. So needless to say we knew something was going on with his swallowing.

We went back up to our room only to be taken back downstairs a little while later for a EEG. Kee had been having spells that we were a bit concerned about. He would stare off blankly and I would wave my hand in front of his face and talk to him but to no avail. Our team of complex care doctors thought that he was having seizures. As soon as we go him down to clinic he started vomiting again, Catrina, our WONDERFUL (beyond words) nurse collected the towel so we could show all of the doctors what he was puking up. We completed the EEG and headed back up to our room.

Later that after noon, his health began declining. This was one of the parts that scared me the most. He became VERY lethargic, didn't open his eyes but for a second or two at a time and was throwing no matter what position he was placed in. He was going downhill and very very fast, right before our eyes. We had an MRI scheduled for that afternoon, Dr. Clems the doctor in charge of the complex care team wanted one done. Only problem was that they thought they would have to sedate him and since he had had food in his swallow study they were unsure whether they would be able to get it done or not. So we went down there anyway with the charge nurse of the infant unit that we were on. We signed off for the MRI and took a little walk, I hadn't seen fresh air since 3 am Sunday morning.

Ryan and I headed back to Kee's room where we ordered some dinner and was settling in for the night. A short while later Elizabeth, the head nurse brought Keegan back to us. Shift change was about to occur and we were lucky enough to have Nurse Laura for the 3rd night in a row. They were doing their usual shift change info exchange when Laura noticed just how bad Keegan had gotten from the night before. Her, Catrina, myself and Ryan began to talk. I told them how unsatisfied I was with the information I had been getting from this complex care team and that something needed to be done fast. His breathing was slowing to about 6-7 times a minuter and his heart rate was dipping too. They told me if I was unsatisfied with his care they could call "cart" which means we would get opinions from other doctors. After talking it over with Ryan and the nurses we decided for our sons sake this was the best thing to do.

Within minutes our room filled with doctors, nurses and residents. Everyone was calling for different tests and other things to be run. About this time Laura, our nurse, phone rang. It was radiology and the look on her face practically told me EVERYTHING. She handed the phone off to a doctor (couldn't tell you his name) and he left the room. Everyone was scrambling around me while I started balling. My baby was becoming more and more unresponsive, something needed to be done and done FAST! The resident told me that they were taking him down to the PICU (pediatric intensive care unit) because his breathing had gotten so bad. A very short while later a new doctor came in. He was rushing around and in the haste of things blurted out what was going on (because he thought we already knew). Our baby had a tumor growing in the 4th ventricle of his brain and now it was pushing on his brain stem and causing his system to fail. I think most parents would have broken down and this point. When I heard this my first thought was, well lets not just sit around and talk about it, what are we gonna do!??!

A short while later I was told Dr. Ackerman, Keegan's Neurosurgeon, was on her way back to the hospital for emergency surgery. The anesthesiologist came in explained what they were going to have to do, Dr. Ackerman came in explained what she was going to have to do and how it would take quite a  long time. He could be under for anywhere between 4-6 hours. At approximately 10:30 pm we walked our baby down to the OR, gave him a kiss and told him how much we loved him. Dr. Ackerman told us to go up to the 3rd floor waiting room, they would call with hourly updates and to try to get some sleep.

At this point I was a hot mess. I had taken not 1 but 2 antidepressants because I was in such a dark place. This did NOT help the situation. Chris and Laura Rexing, some of the best friends anyone could EVER ask for were on the way to visit us when all this went down. They got to Riley just as he went into surgery. They helped us stay sane for the 7 hours he ended up being under the knife.

Around 5 am on Wednesday the 12th Dr. Ackerman came out of Surgery in her scrubs and explained to us that she removed a 6 cm tumor from Keegan's brain. To get an idea of 6 cm, here you go:

The tumor was pushing up his cerebellum and putting a lot of pressure on his brain stem. The pressure on the brain stem was what was making all of his systems malfunction. He couldn't swallow (toward the end of the day on Tuesday he couldn't even swallow his own spit!), He was having difficulty breathing, his digestive system had slowed WAY down (thus the no pooping), he was zoning out (ie seizing) and all because of a 6 cm tumor that absolutely NO ONE had a clue was there.

I have had 3 doctors come and apologize to me. Dr. Ackerman apologized for no seeing it on any scan at all. She was dumbfounded as to why she had overlooked it but after looking at the scans myself (and by no means am I a professional) I could see where it would be overlooked, the color matched that of the brain matter around it and until they did that MRI with contrast and the tumor lit up like a Christmas tree no one could ever tell. Dr. Clems, the doctor in charge of the complex care team, found me in the parent's lounge where I was trying to take a nap. She came in with her tail between her legs and pretty much told me that I am the reason we got an answer as quickly as we did. I knew something was wrong with my child and I didn't give up. She told me I was a good mother and should not feel bad for calling cart like I did. Yesterday Dr. Walsh, he geneticists came into his PICU room, shook my hand and apologized deeply for missing it as well. The thing is I know no one did it purposefully, it was just one of those things that until it reared its ugly head, the CT's just weren't good enough to depict what was actually going on in there. I don't really hold a grudge against anyone; okay maybe a little one against the complex care team-they wanted to run every test in the book and I felt like they didn't want to hear what I had to say. But....that is another story for another day.

So when Dr. Ackerman came out of surgery on Wednesday morning she did tell us that by the looks of the tumor, she believe it to be malignant. My heart sunk a little at that point but I was not terribly surprised, anytime I heard the word tumor I guess I just associate it with the "c" word so it wasn't too huge of a surprise. She sent it off to pathology to be tested of coarse. the final result should be in sometime next week so we should no for sure how to attack this thing.

We have met with a social worker, part of the oncology team and MANY MANY other people. We are in the process of getting into the long term Ronald McDonald House across the street from the hospital, we have priority on the list because the nature of Keegan's illness but have yet to get a room.

He is doing a little better every day. On Thursday he had a central line place while under anesthesia. This will be for chemo and blood draws. He is a hard little guy to stick so this way is just a little bit easier. They also removed his extra fingers and toe during that surgery and took a spinal tap to test the fluid for cancer cells.

Even though he is doing better and is now off IV fluids, had a couple of his lines removed, and the catheter out I am still scared as hell. We WILL beat this thing, I just want to find out what we are up against!

Friday, May 14, 2010


I need to update everyone as to what has been going on. I am tryiing to muster up the strength to put it in wriring. I will say it has been a very LONG couple of days, the future is looking a little brighter although we have a long way to come. Please keep Keegan and my family in your thoughts and prayers.

If you know anyone with an etsy shop that makes cute banners or decorations please let me know...I am looking for someone to donate or sell me some stuff cheaply to make his hospital room a little brigther since we will be here awhile!

I promise an update soon, I just have to gather my thoughts and some strengh!
Love to all,

Sunday, May 9, 2010

A Memorable Mother's Day

I am gonna keep this short, just a brief update on Keegan and our little family. He has been vomiting (only when in the sitting position) since Tuesday. After one emergency trip via ambulance to the ER on Thursday, them telling us it was only viral, it not getting any better and a return trip to the ER on Saturday night; we were life flighted from Evansville to Indianapolis at 2 am on Mother's Day so our magic and wonderful doctors at Riley can do what they do best.
Right now Keegan is sleeping, he has been in pain for the better part of 48hrs and up until admission in the ER last night hadn't really eaten much of anything. He has been resting comfortably all day on an IV and is to have no food till at least tomorrow depending on what his bowel decides it wants to do. The problem is he hasn't really pooped but about 2 times in almost 2 weeks, we tried suppositories=fail, we tried prunes=fail, we have tried pear juice=fail, and we tried apple prune=fail. We tried a warm bath with no luck and the vomiting in the upright position continued.
We are being monitored closely and should hopefully know more tomorrow about why Kee has been so sick! He hasn't even wanted to eat solids which is a RARITY! So if you pray, say a little prayer for us I want my baby to be better soon! He was just returning to his normal self after the Hydrocephalus and shut placement!
Happy Mothers day to all moms!