Do I Dare title this post "Yet Another Plan?"

I wanted to start this post off with a beautiful song that really sticks with me these days:

Smile though your heart is aching
Smile even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through for you

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile

That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile

Sorry if that made you all teary eyed, its just how I am living my life day to day; or minute by minute in some circumstances.

We have had a good couple days. Keegan seems to be annoyed (as he should be) that his legs aren't working. We had to go from whats called an "in and out Cath" to a "Foley" yesterday. Not last night but the night before since it was set for us to insert the cath every 6 hours, he just got too full and was WAY uncomfortable.It was decided later that morning that we would just cath him and leave it it as to put him through less torture.

This weekend we are just relaxing, no radiation like almost everyday last week and no big plans for scans or anything like that. Some family is coming to visit today and mom might be coming tomorrow. The biggest thing I am looking forward to today is going to get cupcakes at The Flying Cupcake Bakery, ummmmm how I love cuppy cakes!!!

Our "plan" for the week includes the following:

• Monday: Radiation at o'dark hundred (aka 7:30 am) then probably being released to home/Bloomington
• Tuesday: We could either be home home in Evansville or starting Proton Beam in Bloomington. This is the part that is yet up in the air. It usually takes 2 weeks to get everything in Bloomington set up to start radiation but Dr. B has worked till midnight at least 1 night I am aware of to get things going for Keegan so we don't loose precious time. If we are home home I am going to get a new tattoo with my birthday money (I turned 30 on the 13th of July). I have already contacted my "artist" and have an appointment for Tuesday evening.
• Wednesday: If we aren't in Bloomington yet, we will repack, and get our bearings after my OB appointment. Not to put too much of our business out on the inter webs but we would REALLY like Keeegan to know the love of a sibling and since we are having a little more trouble than we did with him, I am going to see Dr. Mann about where to go next since its been 6 months of charting and "doing the right stuff" according to his nurse.
• Thursday: If we don't start radiation in Bloomington on Tuesday this is our GO day. We start our 6 week protocol and will be living at Jill's house in Bloomington.......

So that is the "kinda plan". Every time I say we have a plan something else happens and the "plan" is thrown out the window so this is our "kinda plan"

I am going to leave you this morning with a cute video I took yesterday of Ryan and Keegan playing peek a boo. Keegan was in an exceptionally great mood yesterday and giggled more than he has in a week or so, I got some of it on video:'

Peek-a-Boo! from Keegansmommy09 on Vimeo.

The Best Laid Plans of Mice and Men Often go Astray

Lots of things have changed since my last post. On Saturday late afternoon, after my mom and Ryan left to go back to Evansville, I began to notice Keegan had stopped moving his legs. I did some playing around with them; tickling his toes, running my finger up and down his leg, etc. He didn't move his legs and barely moved his little toes. I freaked out cause that is what I do and called the nurse. Well, she didn't come right away so I thought what the heck I will make him a bottle, slide a chair over to his IV side of the bed and feed him. As soon as I picked him up his little legs were dead weight. I then held him like I always to do feed him and he started to scream (from pain is what I am thinking). I went to put him back in bed and try to get him to weight bear on his feet-NOTHING, his legs were like jello. I then placed another call to the nurse to tell her to get in our room right away.

A nurse came in, I showed her my concern and ran to grab our nurse who was just finishing up her lunch. They started trying to get him to move his legs and NOTHING. A few calls were made to Dr. Shih and Dr. Ackerman and a flurry of Nurses, Residents and Fellows quickly came in to assess the situation.

Dr. Ackerman, bless her heart, ran up a couple of flights of stairs, performed a neuro check and said the decrease in movement can be one of two things. Either the tumor is growing more into his spine and compressing it causing him not to be able to move his lower extremities OR it could be from the swelling that the tumor is causing. Either way its a bad situation.

Dr. Shih came in a short time later with a Grim look on his face telling us he was stopping all chemo and we were moving on to radiation ASAP and restarting HIGH doses of steroids to keep the swelling under control. He doesn't want to keep him on steroids long because of long term side effects but we are trying to relieve pressure to this very sensitive area. ::On a side note, we not only are watching his legs but also his bladder and kidneys because with the loss of the lower extremities we run a risk of problems arising if he cant empty his bladder::

Dr. Shih called Dr. B, the pediatric radiation oncologist, out of Bloomington and wanted to get going on radiation that evening. The only problem being Keegan had just inhaled a 4 oz bottle and since kids are sedated for CTS, MRI's and radiation that posed a serious risk to aspiration when waking up.

A decision was made on Sunday that he would start "regular" radiation at 9:30 am on Monday morning in hopes to try to get some leg movement back. Time is of the essence and we needed to get moving. He went NPO at Midnight Sunday and we were down in the IU cancer pavilion at 9:30 Monday morning.

So as you can see "the best laid plans of mice and men often go astray. We thought we had a plan of attack and that all changed in a few mere hours. So what next is what you maybe thinking......Welll......

Today we are going via ambulance around 1 est to the Proton Beam Clinic in Bloomington Indiana to get set up for treatment, we will then come back to Riley where Keegan will get "regular" radiation Wednesday, Thursday and Friday morning. Relax on Saturday and Sunday while be monitored and one more round of "regular" radiation on Monday morning.

Hopefully after today and this week hanging out at Riley getting radiated Bloomington will be ready for us and we can leave Riley to head to Bloomington early next week. This is what he hope to happen.

We do know that his leg movement is time sensitive but the radiation will cause the tumor and surrounding area to swell before it starts to go down so we might not see movement right away. Dr. Ackerman is pessimistic about regaining any leg control at all and in a weird way I can handle that if we can simply get rid of this damn cancer.

So This is How it's Gonna Be

Ry and I talked on the plane to Indy about what we thought the "plan" should be. Originally we thought surgery, radiation and then ??????. Those plans quickly changed; as I mentioned in the last blog post when Dr. Ackerman said the new lesion (the large one) is inoperable due to its location and it would make him a paraplegic if she even tried. So in my head it made complete sense but just for haha's I asked her if we went through the coarse of action that has been put in place and it comes back would she ethically or morally be opposed to operating to get this damn thing out-she didn't answer.....(Please don't judge me for considering this option as I just want my son to live, I want to watch him grow up and get married, in whatever capacity that maybe).

So after Dr. Ackerman came in yesterday Dr. Shih stopped by late afternoon and we discussed our "Attack Plan".  He wanted (and did) start chemo yesterday. He wanted to be doing something while we wait for the Proton Beam Clinic to get their ducks in a row for us. So Last night he started Topotecan and Cyclophosphamide-more like 2am this morning but still. So we are doing 5 days of that concoction, he didn't get very bad side effects from this combo last time so we are praying that this will do for now. On Tuesday or Thursday this week, they will take us by Ambulance down to Bloomington IN where the Proton Beam Clinic is and run there gamit of testing along with getting his mess cast set.

We will live in Jill's house for 6 weeks. He will get radiation everyday of the work week (which shouldn't take too terribly long the only problem is because of his age he has to be sedated every.single.day) which then means NPO (no food) from midnight the night before until after radiation. That is always fun and enjoyable as your toddler wants food just doesn't understand why he can't have it. Meanwhile we will go to Indy once a week for blood work.

After radiation we are looking at taking a vacation (I know again you say, but when you don't know how much longer your child will be with you those memories are more important than ever.) Barring anything else STUPID coming up on scans we will start metronomic chemotherapy which will be outpatient and hopefully we can be on this a long time and diminish the cancer completely.

The weirdest thing about this whole situation is that Keegan is not symptomatic meaning he should be having urinating problems and not able to move his legs but neither is the case. I mean its a good thing that he doesn't have these symptoms but of coarse Keegan does everything his own way.

On a side note and I am not sure if you all remember my post about radiation a few months ago but because he is so young and his IQ is not in the normal range for his age due to prematurity, missing part of his brain and all the chemo and time spent in the hospital, we are looking at a gradual IQ loss of 30 pts which is VERY VERY significant. He will retain what he already knows but new things will come much much harder for him.  This is hard for me to grasp but I know and truly believe after the last almost 2 years Keegan is with Ryan and I for a reason, we love him with all our heart and willing to go to the deepest depths to save our child's life.

{{ We are looking to go somewhere with Keegan that is not outlandishly expensive but a great way to make memories, if you have any ideas please leave them in the comments section or email me at chupp {dot} beth @ gmail {dot} com -Thank you!!}}

A lot can Happen in 24 Hours.

This time yesterday we were at MSKCC preparing Keegan for the MRI that would get him admitted to the 3f8 trial study that I personally believed would be our miracle cure.

Right now I am sitting in Rom 5126 at our good 'ole Riley Hospital for Children.

To get today and all the events that I am sure are to follow I will catch you up a bit on what happened yesterday July 22, 2010. I was up at 6:15 and got ready for the day. Showered, dressed, you know the whole bit. Got the little one ready and headed out to to MSKCC around 8 am or so.

We got there his port was accessed, they drew blood, cleared him for anesthesia. MRI started an hour late around 11:30 EST and was to last a hour and half to two hours. Ry and I tried our best to occupy our time because those hours seem to drag.

Around 1 or a little after they came and got us telling us Keegan was waking up and we could come see him. There policy is very different from Riley's in the fact that they just let him go. We didn't try to make sure he drank and held food down or anything. So off we went to the pediatric waiting room to talk to the doctors. No sooner did we sit down than they called us back to "speak to us".

We entered a room where a "team" of medical professionals had assembled. The lead being a neurosurgeon. I don't really even remember how the conversation started and when the tears started to fall but I remember just looking at Ry and looking at Ry holding our precious baby boy that they were give us the worst news we have heard in a long time.

In short, the tumor in his spine has grown back. Not only has it grown back in the exact same spot that Dr. Ackerman ressected the previous one in May but it is now big enough that it is blocking the flow of his Cerebrospinal fluid which could cause a host of many other problems not to mention the swelling and pressure it could/can be putting on his bladder and Kidneys.

A neurological exam was performed post sedation which made me rather mad because he was still in lala land so his muscles and reflexes were definitely not up to par but anyway the Dr. at MSKCC said at this time we were out of running for the 3f8 trial since this tumor was impeding the flow of the CSF. He wanted us to get home immediately to be admitted to Riley for a plan to be put in place, the longer we waited the more damage could be done.

I called Dr. Shih at Riley, talked to him through tears and passed the phone off to the neurosurgeon we were working with. The neurosurgeon briefly explained the recent findings, they exchanged email addresses and the Dr. in NY told Dr. Shih he was going to give him a large bolus (dose) of steroids to get us to Riley and we would be on our way.

We got a large dose of steroids via IV, meanwhile MSK was getting the crap they wanted to send home with me ready (a disc of the MRI, medical records, etc). Ry got on the computer booked a RIDICULOUSLY expensive last minute flight from JFK to Indianapolis and Ry's bro Bret volunteered to come pick us up at the airport (we love you B!).

After the IV dose was done, we decided we needed to hurry things up a bit. Our flight was to leave at 8 or a little after and it was approximately 4 o'clock and we still needed to pack up the Ronald McDonald Room, hail a cab, and get from Manhattan to JFK to check in with Delta and get through security in order to board the place around 7:20. Ry and Keegan headed back to RMH while I waited....and waited...and waited for the disc of the images to come up.

As soon as I had that precious disc in my hands I ran in flip flops with a backpack on my back from 68th Street uptown to 73rd. When I got to RMH and to our room I just started throwing all of our stuff into bags, not sure what is where and who has what but we did manage to get it all in our bags. I cleaned our our kitchen cupboard and we headed to checkout.

The girl at the desk took FOREVER to check us out and we were in a hurry, by this time is was around 5 and we were cutting it close. I had asked the receptionist to get a number for a cab for us but she was very UNCOOPERATIVE so one of the RMH volunteers helped us get our bags out to the corner of 73rd and York because MSKCC called and they wanted me to swing by the hospital on our way to the airport to pick up some steroids that I would need to crush, put in liquid and give via G tube to him to keep the swelling down.

We hailed a cab, loaded up, drove a few blocks where I quickly ran out of the cab got in the elevator to the 9th floor where they told me someone would be waiting with said drugs (but they weren't) and went in search of said person to get the drugs and get the hell outta dodge. I finally got the drugs took the elevator down to the 1st floor RAN to the cab and we were off.

I thought I was going to die in the cab ride out to JFK, ask the people I was texting with, it was quite scary and it being rush hour on a Friday did not help. BUT we got to the airport safely, checked in and even grabbed a bite to eat at Starbucks with my birthday gift card!

We then headed to terminal 23rd, waited for about 20 until we could board  and got settled in for our relatively short flight to Indy. Upon landing, Bret picked us up and got us to the emergency room at Riley (pretty short drive).

We checked in, Dr. Ackerman happened to be on service and wanted to see the disk they sent home with me. We got put in a room and within a short time Dr. Ackerman came in with a screen shot of his spine. While I had seen the images of the new lesion on the computer screen in front of me in that small room it still shocked me when it was placed in my lap. Dr. Ackerman went on to tell me that the new tumor was inoperable as it was INSIDE his spinal cord and if I looked a little closer at the picture there were two new smaller lesions under the large one.

This was pretty devastating because on the plane ride Ryan and I discussed how we thought we should proceed from here. We thought #1 surgery, #2 Proton beam radiation to the brain spine and extra boost to the new tumors and some chemo along the way somewhere. Those hopes were quickly dashed when Dr. Ackerman said she could not operate. SUCK!

So where does that leave us??? Dr. Shih happens to be the doctor here this weekend (thank the good lord) so this morning we are looking at putting a plan in place as to where to go from here......

Its really hard to have hope if the face of this nasty nasty disease, our family is devastated as well as our friends and many of you I am sure. We need prayers, we need a miracle and we need Keegan to be healed. This has been going on long enough and the poor guy just cant seem to catch a friggin break!

So I beg, and plead down on bended knee that if you pray, pray for knowledge  for our doctors, stamina for Keegan to keep fighting, faith for our family and Hope this we can beat this.

Saddest part is I haven't even been able to share our wonderful vacation with all of you yet......

Till I have more news and plan~
Much Love

Lots to Update

I have a Lot of update to write about including our vacation to Florida and the fact that we are now in NYC waiting to start the 3f8 trial. Bear with me, I am alone with Keegan until tomorrow when Ryan joins me in the city. Hopefully I will have a little more time on my hands to recap the last 2 weeks or so and update with fun pictures! Thanks for sticking by and supporting us! We have an intresting ride ahead of us!

Klick'n for Keegan

Our wonderful photographer J. Briner of Bee Elle photography is hosting an event called Klick'n for Keegan. She has done all of our family portraits and pictures of Keegan since 9 months of age.

A little about the photoshoot:

 

She going to be shooting at Audubon State Park in Henderson, Kentucky on Saturday July 16th. It's just across the bridge, and is absolutely gorgeous! There are woods, a lake, docks, swings, big lawns, everything! She going to have some fun, styled props { think picnics, lemonade, old fishing poles, etc. } to make things a little different! Each mini-session will be 30minutes and include the disc of images from your session. The cost is $75 and all proceeds will go directly to our family to help the cover the costs of Keegans medical treatments and our two month stay in NYC.

 

Anyone is welcome to the shoot, families, babies, couples, groups of friends - it doesn't matter! This is a perfect opportunity to get some new photos in a beautiful landscape with a wonderful photographer. If you're interested in reserving your spot, please e-mail us at Bee.Elle.Photography@gmail.com! Sessions will start at 10am!

Times available:

10:00

10:30

11:00

11:30

12:00

12:30

1:00

1:30

2:00

2:30

3:00

3:30

Candle Fundraiser