Unimaginable

We had our 3 month MRI yesterday. I would like to report that it was spectacularly clean, not a tumor that lit up. I would like to tell you that we danced out of the oncology unit with a "see you a 3 months" and were off to The Cheesecake Factory to celebrate.

But, that is not how our day turned out. We had the scan done and were up in the Oncology clinic by 11am. We were put in our room and told Dr. Shih would look at the scans and pop in to let us know what the preliminary results were. After waiting for about 30 minutes Dr. Shih enters our room along with our nurse practitioner Jayne. I knew by the looks on their faces that it wasn't good. Dr. Shih pulled up the trash can while Jayne sat in the rolly chair. As soon as they got settled in our Social worker joined the talk.

Keegan's latest MRI showed the cancer is back and worse than ever. Instead of just one tumor in his brain (original diagnosis) and the one in the spine, his brain and spine are covered in tumors. Simply put there is nothing more for the doctors to do. The cancer is winning. Dr. Shih told us we have been weeks and months left. He put him on two chemotherapy drugs that will have minimal side effects will giving us quality time.

So we left the clinic with instructions that HOSPICE would be calling and setting up our meeting. We left with a big void and broken hearts. How is my 2 year old only given weeks to months to live? I dont understand.

::Deep Sigh::

First off, let me start this post by apologizing. I am so sorry for not updating as much lately. I find myself saying this a lot to our gracious followers. Its been a "normal" couple of weeks. Nothing major. I also decided about a week and a half ago to "try to not be on the computer as much." Its working out pretty well. I haven't turned my computer on since Sunday the 9th (until today of coarse). This means that I kinda forget about think like email and facebook. It also seems that I neglect my blog; again , sorry about that.

This post is gonna be short. We have an MRI tomorrow 10/20. I having been praying without ceasing. Any cancer patient or their family will tell you that MRI/CTs or other testing will bring out anxiety like never before. You live from scan to scan and the closer you get to the next scan the worse the fear and anxiety grip you. I am there right now. I have weened myself off of my anti anxiety and taking minimal antidepressants, so this is gonna be an interesting 24 hours.

On our Facebook fan page Karing for Keegan we have asked followers to wear green tomorrow in support of Keegan and our family. You can upload the pics of you and your family or pets in green to our page or send them to me at chupp.beth@gmail.com. I will showcase you after our scans.

Last but not least if you are a praying person, we ask for you prayers for patience and peace as we put him under general anesthesia, wait for the 2 1/2 hour full brain and spine scan and then talk with Dr. Shih. We should find out preliminary results tomorrow after the scan and ask for more prayers that the cancer is gone from the radiation and that we can progress onto metronomic chemotherapy.

I feel like I am asking a lot of you guys. I believe in the power of prayer, I always have. I hope you do too!

(photo courtsey of : Whisper from the Heart)

BIG News!

On Sunday October 2nd. Grandma was playing with Keegan's feet and legs when she noticed something remarkable:
Keegan Moving His Legs from Keegansmommy09 on Vimeo.

Amazing Right!?!Keep the prayers coming, how wonderful would it be to prove the doctors by walking one day!

And that makes 57 gray hairs...

A lot has happened since my last post. BIG things, and some small but while I am still coming to terms with the fact that my child can not weight bear through his legs let alone even sit up much unassisted God has had some big plans for us.

On Thursday September 22 Keegan took his last dose of Dexamethasone (Steroids). We weened him so we didn't think much about it, you can't just come off this stuff cold turkey, there are many side effects both on a off of it that have to be watched. This was a happy day as we thought he would start to loose some of the "Steroid face" that many people have come to know and love {We get LOTS of comments about how cute his cheeks are}.

Friday September 23rd Keegan turned 2 years old! Holy Moley, I have a two year old! We had a pretty fun day minus the speech therapy session with Mrs. Toni but really even that wasn't too bad b/c Mrs. Patty got him a HUGE smiley face balloon that we played with while Mrs. Toni was messing with his mouth. We hung out at home most of the day and went to RiRa's (an Irish Pub) for his birthday. They were doing a "give back" night for us on his birthday with 20% of the total food sales of the day going to us!

We had a blast with Aunt M, Aunt Abby & her boyfriend and Grandma. We got home and he got to eat some of the cake I made him. I had hemmed a hawed about what kind of cake to purchase him and decided I wanted to go with the theme that my sisters and I grew up with. Every year before our birthday our mom would take us to the craft store and we got to pick out the Wilson Cake pan that we wanted for our birthday, I have found memories of the different cakes mom would make us.

So when I decided that is what we were going to do, I ventured to the different craft stores in our area in search of an Elmo pan; this kid LOVES his Elmo. Finally found it at Hobby Lobby. So Keegan had his very own homemade Elmo cake. We gave the whole cake to him to dig into but he HATES to get dirty so it was kind of a waste but we got some great pictures. We then opened gifts. Tons of people sent him cards and presents-THANK YOU to ALL!

After our little birthday celebration we gave Keegan a bottle and got him ready for bed. That is when we started to notice he was acting a bit off. He normally finishes his bottle in record setting time but this time he drank it pretty slowly and left just under half of the bottle unfinished. We laid him down for the night and thought he just had too much cake and wasn't really hungry.

On Saturday the 24th I went with my mom and sister to the 4H Craft Fair. He didn't act weird the whole morning so I thought maybe the bottle from the night before was a fluke. We came home and I put him down for a nap and when he woke up around 3 o'clock I noticed immediately that the area around the tip of his shunt was swollen. Within 15 minutes we were out the door on the way to the emergency room and a call was placed to the neurosurgeon on call at Riley.

::Warning, I may get a little livid about our ER visit in the section of the story that follows, I apologize up front::

We walked into the ER at 4pm. We got in immediately and were placed in a room. Our nurse, a big mass of a man, came into the room to go over why we were there, his meds, and usual "stuff". He got to the meds part and rattled off 3 drugs, one of which he is still on for his seizures and the other are kind of "as needed". When I told him he has a TON more drugs he is currently taking including antibiotics, anti fungals and other drugs he just shrugged and kept going {appalling piece #1}. Shortly there after the Doctor, if you want to call him that, came in. He looked at Keegan who was sitting up in the bed playing with Ry and said "Whoa"{appalling piece #2}. He saw his shunt and thought it was very infected looking (what we had to point out was that the part he thought was sooooo bad was actually the bulb of the shunt)---ANYWAY--He then said "who put that in" when I commented Dr. Ackerman at Riley he said "do you have a number for her?" I said yea and proceeded to hand him her business card from the little Rolodex I keep with me at all times.

He placed the call while we waited and a short time later came back into the room to tell us that the Resident on call at Riley said that if it a) wasn't red b) wasn't leaking c) he was acting normal d) didn't have a temp then there was nothing they could do {Appalling piece #3}. I was in shock. I knew there was something wrong and made a point to ask the doctor if they were just waiting for it to get worse. I said something to the effect of "well, we can catch this early enough that he doesn't have to be hospitalized BUT NO, its nothing" I was livid. By this time it was 4:30 and the doctor came back in the room to tell us he was gonna finish his paperwork, there was nothing they were going to do for us and to call Dr. Ackerman's office the following Monday.

I was pissed to say the least and appalled that they would send a child that can go from okay to not okay in the matter of a day back home. I will be having words and filing a complaint with the hospital yet again and taking him to the only other hospital in Evansville the next time something happens.

Sunday he woke up, Shunt was not any better or any worse and he continued to not be hungry. He would only take half his bottle and later on in the evening he started to vomit. My brain went into ::FREAK OUT MODE:: as I tried to tell myself there was NO way the cancer could come back already...right?!?!

I placed the 2nd call of the weekend to Dr. Ackerman's office on Sunday Evening and they again told me wait until the morning and give her office a call if the shunt didn't look better and he continued to throw up.

Soooo what do you think I did, yep that is right, I called them first thing Monday morning, Dr. Ackermans nurse scheduled an appointment for Keegan on Wednesday morning along with a CT and Shunt series. So Monday we played it cool and really didn't do anything to strenuous and Tuesday the same except I had an interview at JoAnn Fabrics at 9 in the morning. I applied a couple of weeks ago for a seasonal job. Nothing major just something to get me out of the house since the cooler days are coming and we wont be able to get out as much.

We left for Indy later in the afternoon arriving at our friend Christine's house around 7 or so. We went out to get some food then settled in for the night. I was exhausted and since we had to be at Riley between 730-800 for some labs for his Endocrinologist I wanted to get him and I to bed early.

Wednesday morning we got to Riley and got our blood work done but not without a vomiting spell of just stomach juices ...gross I know. Then we had the CT and Shunt Series done. After that we went up to see Dr. Ackerman. Long story short, and between much hemming and hawing on her part, she did a shunt tap. The pressure was fine. She then decided to turn his shunt down to 80 from 100, he has a programmable one. This will allow less pressure in his head and drain more fluid. We left there with strict directions to call the next day and let them know how he was doing.

Thursday morning around 3 am I gtubed a bottle (8oz) and 60 mL's of water. No sooner did I start the water than he was vomiting it up. You see he fell asleep at 5 pm on Wednesday and didn't wake up until 7am on Thursday so he hadn't eaten his late bottle. Sooooo when Dr. Ackerman's office opened at 8 I was on the phone updating them on his status. Almost immediately and without hesitation they told us in not so many words to get our happy butts up to the Riley ER. We would have another Shunt Series and CT done.

We checked into the ER right at 3pm Indy time. They got us in a room very quickly and got the CT and shunt series done and brought us back to our room. Dr. Smith, Dr. Ackerman's co worker, came down and told us the scans looked good. No swelling or gross changes from the scans the day before. Then Dr. Shih came in, off the clock, and was just talking with us about how he was 99% sure this wasn't tumor recurrence at this time. The ER resident then came in and told us they were going to go ahead and admit us for 23 hour observation since he wasn't eating. At this point they also decided to restart his steroids because he could be having some swelling (in his brain) and side effects from the steroid ween that was done the week before. They gave us 5mL's of the decadron while in the ER...and then we waited...for another 5 hours. What was the hold up you might ask.....well it was for the HEM/ONC Resident to come down and admit us......Then guess what....we waited nother hour for a "empty room".

We were finally settled into our room at 11pm on Thursday....yes 7 hours after we entered the ER. Keegan began eating regularly the next day. Thank Goodness for answered prayers! We ended up leaving Riley around 12:30 on Saturday afternoon with steroids on board and Keegan holding down food! We restarted the steroids and are going to take a much slower ween and at the first inclination of a problem I am supposed to go back to the last dose of steroids that we were on prior. It definitely scared me but I am soooo glad we had it checked out and he's feeling better.

As of today he is doing and actual normal. The shunt looks great and he continues to eat.....

Stay Tuned for a BIG Announcement!

Grief and Grieving.

Yesterday was supposed to be a happy day.

Yesterday was supposed to be full of happiness and joy as our little boy finished his last radiation treatment and got to ring the bell at the Proton Beam Center.

For the most part yesterday was just that.

But as the day went on I got more and more uneasy and just generally not happy.

It culminated in an ugly grieving spell as I was getting ready to go to sleep last night. Ryan and I had just gotten home from our small group and headed to bed. My ear had been hurting and earlier in the day Ry told me to just put a little peroxide in my ear. Flash back to bed time. I asked Ryan where the Peroxide was. His simple reply "I think its under the sink."

It was those 6 simple words that threw me into to "grief mode." I thought to myself  ::I don't know why::: we are never going to have to childproof the house because my "toddler" will not toddle around and get into things like cabinets, closets and drawers. This escalated to Oh MY GOODNESS my son is NEVER going to run around a playground and hop from the swing set to the slide. The tears started rolling and they were unstoppable.

I sobbed silently into my pillow about all this things my precious little boy that has fought sooooo hard against a horrible disease will never be able to experience. Today I have been thinking of that episode and why last night, was it that simple question that made me trip into this black hole?

I have been saying to the doctors, nurses, friends, and family "as long as my baby is here I don't care about the legs, he can still have a full, happy, productive life." Their reply is always along the lines of "of coarse he can and he will!"

Was that statement a front to make myself feel better? I don't know, I know I do genuinely believe that but why all of a sudden does the loss bother me so-is the depth of the paralyzation just hitting me? Is it the weening of the meds (my anti-depressant and anti-anxiety)? Is it getting ready to "be my time of the month?"  Is it normal? I don't know, but what I do know is that I am hurting from deep in my soul.

I think of ALL things he will never be able to do like ride a bike, roller skate, play hide and seek, pump a swing higher and higher until he touches the sky....

Its crushing and I feel like I can't breath.

50/50

Today was one of those days that I just wish had turned out differently. From the get go it was not great. To start off we were scheduled at the Proton Center for an 8 o'clock session. Well, eight turned to eight thirty which turned to nine which finally turned to nine ten when Jeff came out to get us. Meanwhile, the whole time we were waiting Keegan was crying. See I think his internal clock is broken or malfunctioning. the last two days he has gotten up at 5:30 and 5:15 respectively which on "home time" is 4:30 and 4:15 for no apparent reason. So while we were waiting for our turn he was crying relentlessly; snot bubbles and all. I couldn't have been any happier to see Jeff's face and be taken back. My son was tired and hungry and couldn't understand why we were walking around the waiting room aimlessly.

After he was out and in recovery they couldn't find Dr. B for our weekly Doctor checkup. I was getting EXTREMELY Frustrated because I wanted to get done at clinic so we could get on the road to Indy so we could get back at a decent time. Ugh but anyway, Dr. B finally came in, he checked Keegs over from head to toe, literally and told us he would basically see us on the flip side, he is headed to the ATL next week for a conference and won't be in town for his last session. He only has 4 more to go-WAHOOOOOO!

I knew that the rest of the day would be long, if this was how the day was gonna start I could only imagine. On the way to Indy from Btown I stopped at Starbucks and got myself a Venti Pumpkin Spice Latte-it completed me and I felt soooo much better! We got to Riley at a decent time and no sooner than I poured Keegans Nutren into his bottle than Larissa called us back to the weigh station. As we were getting weighed (29.5 lbs), BP checked as well as temperature, Crissy, Robin and Sally came in cause they heard us and wanted to say hi. It was a big reunion in a small room!

Sally brought us down to wonderful room #9, I have received more bad news in this particular room than any other rooms in the clinic.....plus its very cold so needless to say=not my favorite room. She drew his blood, his ANC is well over 2200 which is fabulous and she sent Dr. Shih in. This is where I think I was thinking worse thoughts that what was coming out of the doctors mouth BUT in my defense I am trying to ween myself off some of my drugs (antidepressant & Anti anxiety mostly). So if it seems a little skewed you know why.

He came in looked at Keegan and we immediately began talking about "the future". In the cancer patients world the "future" consists from scan time to scan time. You can think outside that box, its weird you find yourself living from scan to scan praying and hoping with all your might you can make it to this date/occasion without anything major and so on.

Dr. Shih jumped right to that dreaded date, October 13th (its a Thursday for those of you concerned-I already checked).  So MRI on October 13th, they can begin to tell how effective the radiation was and so on. Scanxiety has already set in. We then talked about the Metronomic Chemotherapy that Keegan will be on. It is a combination of 5 chemo drugs, given at home orally. Dr. Shih said some kids have seen great results with this certain protocol (Kieran Protocol) but since Keegan is in a "bracket"-if you will-all by himself we really don't know what we are doing. He is maxed out for his lifetime on high dose IV chemotherapy and radiation (you can let your heart sink a little...I did). So unless they come up with a new drug in case he relapses yet again we are SOL (for lack of a better term). We just hope and pray for no relapse.

Dr. Shih said at this point he gives him a 50/50. I am going to be positive and pray we are the 50 that survive. We have to, God would not have put this child through all this if it wasn't to life a long, healthy, productive life....right? That is what I am telling myself.

So D day is marked, from here we will hopefully move forward with metronomic chemo, inpatient rehab and getting this boy back into some sort of schedule....did I mention he will be 2 in like 2 weeks....where did the time go? Holy Cow!

To add a little salt to my wounds today, I filled out Keegan's disability paperwork and got an application from Dr. Shih for a permanent Handicapped placard from the license branch.....how depressing.

The Ant

Brenda was almost halfway to the top of the tremendous granite cliff. She was standing on a ledge where she was taking a breather during this, her first rock climb. As she rested there, the safety rope snapped against her eye and knocked out hercontact lens. 'Great', she thought. 'Here I am on a rock ledge, hundreds of feet from the bottom and hundreds of feet to the top of this cliff, and now my sight is blurry.'

She looked and looked, hoping that somehow it had landed on the ledge. But it just wasn't there.

She felt the panic rising in her, so she began praying. She prayed for calm, and she prayed that she may find her contact lens.

When she got to the top, a friend examined her eye and her clothing for the lens, but it was not to be found. Although she was calm now that she was at the top, she was saddened because she could not clearly see across the range of mountains. She thought of the bible verse 'The eyes of the Lord run to and fro throughout the whole earth.'

She thought, 'Lord, You can see all these mountains. You know every stone and leaf, and You know exactly where my contact lens is. Please help me.'

Later, when they had hiked down the trail to the bottom of the cliff they met another party of climbers just starting up the face of the cliff. One of them shouted out, 'Hey, you guys! Anybody lose a contact lens?'

Well, that would be startling enough, but you know why the climber saw it? An ant was moving slowly across a twig on the face of the rock, carrying it!

The story doesn't end there. Brenda's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption, 'Lord, I don't know why You want me to carry this thing. I can't eat it, and it's awfully heavy. But if this is what You want me to do, I'll carry it for You.'

I think it would do all of us some good to say, 'God, I don't know why You want me to carry this load. I can see no good in it and it's awfully heavy. But, if You want me to carry it, I will.'

God doesn't call the qualified, He qualifies the called.

Yes, I do love GOD. He is my source of existence and my Savior. He keeps me functioning each and every day Without Him, I am nothing, but with Him... I can do all things through Christ which strengthens me. (Phil. 4:13)

**My sister in law sent this to me via email and I thought it was just neat to share.