Worry

“Worry is like a rocking chair--it gives you something to do but it doesn't get you anywhere.”

I have always been a worrier. Since the day I was born I have worried about things both in and out of my control. Its in my blood, my father is the EXACT same way. I have tried to change, I truly have, but life circumstances have just shown me that worry is warranted (in my small corner of the world). 

They make medicine for that some will say. Yep, I know, I am currently on it, not once, but twice a day as needed. Unfortunately it's who I am, its in my DNA. So why should this aspect in the current season of my life warrant any less worrying? It shouldn't, I have a barrage of things to worry about and my thought is maybe by listing them here and putting them down in black and white will either:

A) make is seem like it is a legitimate worry

or

B) show me its as silly as all get out and can be put at the bottom of the "worry" list

Gosh, where to start, well I will just say it. I am worried that we don't have enough money in the bank for the kind of funeral/memorial that Keegan deserves and that I want for him. The first step obviously would be to contact the funeral home and get that ball rolling. As much as I am "down for that" it solidifies in my mind that my sweet little boy is not going to beat this and that breaks my heart even more than it's already broken. We pretty much know what we want for him already its just getting the price tag for it and that scares me to death. Do you know that the average funeral costs $6560 (2009)? I know when Ryan's mom passed away the bill was much more than this. While Ry and and I both have life insurance because I believe it's one of the best investments you can make as a married couple, we were unable to obtain life insurance on Keegan due to the Simpson-Golabi-Behmel diagnosis shortly after birth. Not to mention the subsequent cancer. I want it to do his sweet life justice without sacrifice. I know not many of you have been in our position and can't imagine it but wouldn't you want the best, nicest, most wonderful celebration of your child's life?

I worry, I am terrorized, and plagued with fear for the end. The unknown is the worst part. Keegan is doing well now and we are even going to discuss some other chemo options that he has yet to see to try to get some better results but without a miracle/divine intervention (which I know is possible) we are faced with the reality that the end WILL HAPPEN. Whether is sooner or later we don't know. And since we don't know then we obviously don't know how it will happen. Keegan's oncologist explained to us it can happen a plethora of different ways. The best and possibly "happiest" way for him to enter into eternity would be to just slowly stop breathing. The lack of oxygen provides a euphoric feeling. I know it's weird but that kind of comforts me. To know he would be "happy" as he left us and went into Heaven. I was there when my Mother in Law passed away from breast cancer just three short years ago and I relive her last days in my head all the time and I don't want that for my son. While I know their cancer's are different it still haunts me.

I fear that we will never be able to have another child and I also worry that if we manage to have more children they too will get sick and leave us. Some people know and others don't that we were trying for Baby Chupp #2 from February of this year up until last month, which obviously was unsuccessful. Lots of people have weighed in on the matter and while I haven't talked to my doctor about the issue yet some people seem to believe it was the stress I was under in my day to day life that inhibited conception. We became pregnant with Keegan our first try so this was very hard for me to endure. I temped and used OPK's and it just didn't happen. While we have put the plans for #2 on hold for now it is still there nagging me in the back of my mind.

 

Those are just some of the worries that run through my mind on a daily if not hourly basis. I know many of you will tell me to turn to God and let all my worries rest on his shoulders. I try. I am still working on that but a mother's worry is a mother's worry and those of you that are mom's I believe can understand this. I try not to let it "ruin" my day but I would be lieing if I told you these things weren't on my mind first thing in the morning and last thing at night.

 

Here is to a new day with less worry. Right?



How are WE doing you might ask.

The last week has proven to be one of the darkest in our lives. As we now try to find yet another new "normal" we struggle with knowing that our time is limited.

While the first few days were exceptionally hard, they have gotten a tad bit easier. I don't think that it is "easier" to know he is going to pass but I have come to the realization that there is not a darn thing we can do about it. Making these weeks (and if we are lucky enough) months special beyond imagination is what I am striving for. That is what gets me out of bed in the morning. Every day I make it my mission to make as enjoyable a day for the lil man as possible. Whether it be staying in the house in our PJ's all day and watching Elmo or going swimming at his Aunt Abby's Apartments indoor pool. Effort is definitely made to do the things we have learned he enjoys and loves.

We have had lots of family in and out of our house since last Friday. First it was Keegan's Aunt Erica & Uncle Steve along with 2 of his many cousins. Saturday brought his maternal grandfather, and my grandparents. We have enjoyed having everyone around visiting and getting to know Keegan. We will enjoy Uncle Bret & Aunt Toni this weekend along with two more cousins. It should be a fun time. It's nice to have family around enjoying what we get to enjoy every day, the smiles, laughter and attitude (if provoked).

I know we have a lot of people praying for our family, for Keegan and for Ryan and I's marriage. We really really appreciate it. Ry and I talk daily about the when's and how's along with what we are going to do without him. I come to him with my worry that I won't be able to do this and he gently reassures me that I can. At the same time when I told him I didn't want to do this, he told me I had to, blah.

We are both convinced that Keegan was sent to earth and to us in particular for a reason. What that reason is, we are still unsure. I am not even sure that we will ever find out in our lifetime. But the fact that we were chosen as his earthly parents makes me proud. He is a one of a kind kid and I have been blessed to be his mother, for whatever amount of time that is. I wish it was later rather than sooner but God has other plans for him and our family so we just roll with it.

I pray ALOT, I pray that we get another miracle and I pray that God take away Keegan's pain. Since prayer is all I have right now then that is what we must do. I turn to God multiple times a day asking for time, healing and miracles. Its ironic that over the past month or more the sermons at church have been revolving around prayer. I have taken a lot from these sermons and just last weekend the sermon was about praying for a miracle. Needless to say it really hit home. When I questioned our Pastor's wife after church about asking for another miracle and wondering if it was selfish and greedy, she simply replied absolutely not. (for those of you unaware an MRI performed in July '10 showed the tumor came back through the worst chemo possible. They sent us home with only a couple options and when we chose radiation we proceeded to get all our ducks in a row for that. We had another MRI before radiation was to commence which showed the tumor was gone, simply not there. We then proceeded on with the regularly scheduled chemo.) So here I am a little over a year after that life changing situation asking and pleading for another miracle to save my baby. It is possible through him. I am a believer!


On a side note: I would like to give a HUGE thank you to everyone who has signed up at mealtrain.com for us. We have had people volunteer to bring us meals every Monday, Wednesday, and Friday through JANUARY. I feel beyond blessed for all the wonderful people in our lives who are willing to take an evening out of their busy lives to make us a home cooked meal. THANK YOU THANK YOU THANK YOU. This means I don't have to worry about dinner at least 3 nights out of the week and we can just soak up extra Baby Keegan time!

And thank you to all the wonderful follower both here and on facebook that have given us wonderful words of encouragement and love in very very dark time. It means so much to us!

(I wanted to share some of our current family photos but the CD they are on is being funny so stay tuned for those!)

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.

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.

Love

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

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,

Ethics, Morals and all that Stuff.....

As some of you may or may not know by now, the pathology that came back on the growth that was removed from Keegan's spine on Monday is Medulloblastoma (the same cancer removed from his brain a year ago).  They also took a sample of Keegan's spinal fluid while they where in the spinal column, results came back yesterday that there are free roaming cancer cells in his spinal fluid. To say the least we feel defeated. We feel that God has let us down and don't really know where to turn next. God is the great and sovereign healer so why hasn't he healed MY baby? I just don't understand, and with all the people prayer across the country and even the world, why does this have to be him; us.

We do have decision that are going to be made. Even though I personally feel let down by God I am looking to him for strength and wisdom to help make these decisions that NO, I repeat NO parent should ever have to make. Even my worst enemy. Without going into too much detail I will sort of outline the decision we are presented with at this time.

• Full brain and spinal radiation-while this is the only option to help fully irradiate any and all tumor cells floating in the spinal fluid, thus sterilizing it, it will severely effect his IQ and drop it many many points. Is this ethical or moral, I am still trying to figure that out. Do I take a child how is already special needs and compound that by 100x's  with full brain and spine radiation to try to save his life? I don't really know, we are at a loss here.
• Another option is Messocentric Chemotherapy. This is a combination of chemo drugs given orally and in the comfort of our own home that work at destroying cancer cells by cutting off the blood supply to these nasty little things. Supposedly side effects are minimal but this by no means is a cure.
• Third option, is 3F8 at Memorial Sloan Kettering Cancer Center in NYC . Dr. Kim Kramer is working with another doctor on this radioimmunotherapy. As quoted from her page:

"In my research, I am investigating novel treatments to eliminate microscopic tumor cells in the central nervous system. These novel treatments include monoclonal antibodies attached to radioactive substances (radioimmunotherapy) that are administered directly into the cerebrospinal fluid. We remain one of the few programs in the world committed to the cure of cancers of the leptomeninges. "

         While this sounds risky I am feeling in my heart it is the first and maybe the best way to restart this fight.   It will probably take some money but if anyone has any novel ideas for fundraisers I would be down.

I am asking for prayers for guidance and peace for Ry and myself along with our doctors and nurses and we come to decisions that no parent should ever have to make.

Thanks for listening, if you have anything to contribute I ask you to please leave a comment, if you have nothing nice to say though; like momma says don't say anything at all, this is a very trying time for our family and we don't need negative or unproductive words from the peanut gallery.

Thanks so much and with much love!!!!

 

Things I Have Realized in the Last Two Weeks.....

This is a list, compiled by moi, of things deep and not so deep that have come to me in the last two weeks we have been in the hospital (list form of coarse, its always easier):

1. This is a tough round of chemo (duh, Beth right?!?!) No I mean really-the mucositis, the vomiting and diarrhea is all so much worse this time.
2. Keegan is on the upswing of things (we think he peaked on Saturday for the worst possible day yet), that or the continuous dose of Dialaudid is finally right and he is comfortable-either way, the days are much nicer!
3. Keegan sleeps ALOT when he system is on the rebound he has pretty much been sleeping almost for 24 hours now.
4. I have scene this campus (IUPUI/Riley) in Spring, Summer, Fall and getting ready to see the winter version-how sad is that? I realized this while walking back over to the hospital from RMH and looking down this beautiful corridor between the parking garage and the outpatient center and almost half the trees have no leaves ::insert pouty face::
5. I am REALLY looking forward to Christmas this year, not really sure why-I haven't been like this since I was a kid but for some reason this year is extra special and I feel like going all out even though we don't have the money (so I won't don't worry)
6. We have to buy a new tree. Because of Keegan's transplant we can not put the old one up because it previously (before last year) was stored in its original box complete with water damage from one of the basement floods thus causing molding to the box and thus probably causing mold spores on the tree even though we cant see it. So new tree it is.
7. I am in love with all things sweet. There.I.said.it! I can't get enough. I go to the grocery trying to get food that I can "live on" during the week while mom, Ryan and family are at home and I am here alone with Kee. It never seems to fail, I come back with cookies, pastries, chips, soda and other very bad things-comfort food, maybe......
8. I am WAY WAY WAY overweight and out of shape and its depressing. After Keegan was born I planned to get back on the treadmill as soon as the doctor would allow, well; Then all his health issues kept creeping to the surface and I kept pushing it back and pushing it back. I need to get healthy, for me and for my families sake. At this point it has to wait until we are released from Riley and home, this place is not conducive for a diet and/or exercise.
9. I loathe the Ronald McDonald House. I hate setting foot in that place. To me (and this is my opinion and my opinion only and not about other Ronald McDonald houses worldwide) its dirty, dark, depressing and most if not all of the volunteers are not very nice. I have had a women (I think the same one) on more than one occasion be RUDE beyond words. Our bedroom is gross, there is a HUGE stain of who knows what in the middle of the floor between the 2 beds and the shower never completely drains while you are in it showering.
10. I LOVE my husband. I always knew that I loved him, but being separated for half the week really makes me miss him and spending quality time with him. He is my best friend and soul mate. It aches my heart on Sunday afternoon when he drives 3 hours home so he can work part of the week only to provide for his family-I know that if he could he would be here with us 24/7-I am positive of that-I LOVE YOU RY!
11. 5 flights of stairs is a LONG way to go up when you are out of shape see #7 & #8.
12. There are so many wonderful and caring people throughout this great country that care for Keegan. I have been receiving cards on a daily basis from people far and wide. They give me hope, they give me strength, and help me feel like we are NOT in this fight alone; god has given us lots of people to turn to.
13. The nurses over her on the Stem Cell side are beyond WONDERFUL. In fact I really enjoy the ones I have gotten to know and would consider them friends. That is a good feeling.
14. I know who my trues friends are, whether that be IRL or the inter webs, you know who you are and you matter to me!!!
15. My sister needs a good guy, again my heart aches for her to find her soul mate. I hate that she has to go through guy after guy only to find they are either full of themselves or not mature enough to handle a real relationship (by any means). I have really liked the guys she has dated, but I hope she finds Mr. Right, she deserves it!
16. Although its tough to find the time to blog, I LOVE it, it helps me vent, and gives you guys a peek into our life!
17. Keegan hates to have his mouth suctioned. He pushes the wand away everysingletime I get it close. Buddy this stuff is better out than in-PROMISE!

Thanks for bearing with me!
I think today is a good day!
B

I am happy to Announce.....

I am happy to announce (to the tune of "School's Out for Summer")-

CHEMO'S DONE FOR-EVA

(hopefully)

Sorry didn't think about orientation of the video at the time...to excited!

Love ya'll,

B

Chemo Shemo

Today marks the half-way point of Keegan's last round of chemotherapy. The last three days he has gotten Carboplatin for 4 hours stints in the afternoon. He has done fairly well with the Carboplatin I don't know if it's because he is also receiving an anti nausea med called Emend along with his normal Zofran or if his little body has learned to tolerate it. We are loving being on the stem cell unit; while we miss our HEMOC nurses immensely, they still come visit since we are just a swinging door away!

On Monday, our first day back, Ry stayed with me to get us checked in and left around noon. I set up the room so I felt a little more at home and I hung fall and Halloween decorations (pics to come). Occupational Therapy came and did their evaluation on him and our favorite Chaplin Rebecca stopped by! It felt good to see familiar faces in a unit we were unfamiliar with. Keegan was in a great mood giggling and laughing for our nurse Rachel (she looks like the Rachel off GLEE too!).

Tuesday passed VERY quickly, which is surprising since I was alone. Usually my time spent alone is long and depressing. We got up, I gave him his meds, THEN EVERYONE decided to visit. Our social worker stopped by, our at home coordinator popped in, so did a music therapy lady to introduce herself, we also had our 2 stem cell docs, Cathleen our Stem Cell coordinator, the Stem Cell NP......I hope I am not leaving anyone out! I gave Kee a bath, sponge of coarse, dressed him and we played for most of the day. OT did come in to have a session with him. They worked on turning pages in board books along with lifting flaps. After a little nap we got up and watched The Wiggles DVD. Keegan sat up, assisted of coarse, and watched the.entire.video! I even tried to get him to lay down but he would not have it!!! He wanted to sit up and watch his movie!

Wednesday was also a great day! He was the same ole giggly, bubbly Keegan. This is great to see although I fear that the vomiting and crankiness is soon to follow. Today was his last day on Carboplatin. We had to get a GFR-what is a GFR you might ask well the answer can be found HERE or I can summarize by telling you that its a test where they inject a "medication" into Kee's central line. There is a blood draw at 1 hour post injection and then 3 hours after the initial injection. These draws determine how well his kidneys are functioning and spitting out the bad chemo drugs. He passed with flying colors so his dosage on the Carboplatin didn't have to change (Thank Goodness-momma is not good with change!). Meanwhile we just hung out in our room, entertaining visitors when they popped in and just having a grand 'ole time! I did find out that Keegan thinks the "Oink" snort of a piggy is absolutely hilarious! It's so funny to see him crack up over it!

Tonight Keegan is getting a new drug called Thiotepa, it can cause lots of problems and this is where the worry wart in me is FREAKING out! Thiotepa can cause sterility, but really, that is not of my concern at the moment, call me inconsiderate. I would rather him have a life and be sterile than no life at all! Thiotepa is also very harsh on the skin. He has to be bathed pretty much every 8 hours or so to keep his skin from being burned and to keep it from turning brown. So the Thiotepa was started at 6:30 pm tonight. He had to be bathed at 8pm and will have to be bathed again at 4 am. Along with bathing we have to change EVERYTHING that touches him i.e. blankets, clothes, leads....well you get it. This is done religiously until Sunday-24 hours have the Thiotepa is finished. After the three hours of Thiotepa (kinda a fun word to say) he gets Etoposide or VP16 for another 3 hours. He has had this drug before just not in IV form. This is one of the drugs that was administered at home and given through apple juice. The IV form is a lot more potent, but these two drugs are a lot of the time given in conjunction with one another.

So Ry is on Keegan duty tonight so I can get a good nights rest. It wears on you sleeping in the hospital for days at time. My body has become accustomed to the uncomfortable purple chair bed thing and people CONSTANTLY coming in the room all night long but; a nice, soft, gushy bed is nice once in a while too! I hope to find a happy baby when I get back over to Kee tomorrow! 

Here is to a couple of bendryll, my eye mask, and LOTS of prayers!

Goodnight ya'll
Beth

PS- I have had a few inquires where to send stuff if people wanted to send letter or encouraging words or such. You can send them to us at the Ronald McDonald House.

That address is:

Ronald McDonald House

c/o Beth & Ryan Chupp Rm 36

435 Limestone Dr

Indianapolis IN 46202-2189

My letter to Keegan

Dear Bubby Kee:

Tonight, as we sit in our "home away from home", at the CandleWood suites, I am relishing in the last couple of hours of a happy, not sickly baby. I only say this because I am afraid of what is to come. I know how crappy you felt with your "regular" regimen and now we are going and kicking it up a notch. I know what is to come, the vomiting, the crankiness, the sleeping all.day, then the transplant. I have NO earthly idea what to expect after that. They tell me you are going to smell kinda funky for 24-48 hours-this should be interesting. The doctor says you could get sick, very sick, although we hope we avoid this.We are essentially rebuilding your immune system since we are wiping it down to 0.  

Tonight as you lay here between Daddy and I in the King size bed, I am going to try to remember your smell, because we all know that once we enter the hospital you get this odd medical/sterile/chemical smell. I am going to try to remember your giggle, your energy, and how you want and need to TOUCH everything. I know this all sounds terrible and sad, but its weird how life changes once we enter the hospital. Its like life for us just stands still.    

Two months is a very long time. Two months is how long we are going to be living in Indy whether that be in the hospital or for the 2 weeks after you are released at the Ronald McDonald house. Two months brings us to the end of November; most likely the beginning of December. This is a long time for us to be away from our home. Our home with the beds we love, the doggies we love and our family. While they will visit us on days off and weekends it's not the same. Its you and me kid, Daddy is going to try to work Monday, Tuesday and Wednesday and come up either Wednesday night or Thursday morning. This leaves us alone about half the week. I am going to do my best to be strong and be the best mommy I can be! I can guarantee you that!

I know its going to be physically hard on you but this is very emotionally hard on me. I am not going to lie. To watch you go through what you are going to go through is hard enough but then having to deal with being away from home, sleeping in an odd place and trying to "relax" and "rest" is hard. I worry about you. I worry if when you spike that temp, that we know will happen, what is it from? What are they gonna do to find out what is going on in your little body? I love you Keegan, and I know as hard as this is on me it is even more on you. You are the one injected with "poison", you are the one that is delayed when it comes to your gross motor skills and just when we are making MAJOR process I know it frustrates you that we are more than likely going totake a few steps back. I know you are going to have good days and bad. I hope its we have way more good days than bad and before we know it we are on our way home!

I look forward to getting you "free" and heading home to be on isolation for 6 months to a year; at least we will be in our own home! I look forward to getting my Keegan back and healthy! I look forward to your hair growing back!!! I am so excited to see what color and/or texture it will turn out! I am excited to go on our beach vacation next summer and see how you react to sun, sand and water! OHHH and that reminds me I look forward to your central line being removed as well as your g-tube! How could I forget that! You will be able to take a REAL bath which you haven't been able to take since May and you used to LOVE them.  When I look back over this paragraph this is what I am going to put my focus into, instead of being sad and depressed that we are in this crappy situation, think of all the good that is to come!

Tomorrow is a big day for us all! Mommy and Daddy as well as many many many people near and far that love you!  Remember that as you continue to fight, we are all behind you! Go Team Keegan!

Some of our Littlest Team Keegan fans!

Ethan & Vincent

With that Baby Kee, I say goodnight!
Love,
Mommy                                    

Keegan is One!!!!

Oh what a year it has been. I know everyone says that the first year has flown by and I am sure they will continue, but with our constant trips to doctors, specialists and tests I feel our year has gone by way faster than usual! I will be updating this post this weekend to include some more birthday festivities we will have tomorrow. We are still at Riley waiting for his counts to rebound from this current round and then we should be able to go....with that said-Keegan LOVES cake!

My mom and two sisters along with Ryan's Dad and Aunt Ruby came for his birthday festivities on his actually birthday which was September 23rd. We had cupcakes delivered to us all the way from French Lick Indiana from Mrs. Alyssa from ABCupcakes.

On Saturday the 25th we celebrated with Uncle Bret, Laura and Michael, Grandma, Aunt Abby, His great Aunt Sofia and Uncle Tom along with his second cousins David and Sarah, Aunt Erica and Uncle Steve and Zack, Caden and Ridley. Our friends Ida and John from Fort Wayne also came down to spend the day-Uncle ReXx and Aunt Laura showed up a little late but we still love them anyway, they were walking in the Race for the Cure in Evansville.
Ryan and I decorated his hospital room as best we could to look "birthdayish". I bought 2 HUGE balloons, and by huge I mean bigger than Keegan himself, my mom brought 4 and Childlife gave him 1 with the birthday presents they gave him. So our room is FILLED with Balloons!

Here is a slide show of his celebration on his actual birthday:

"Keegan's First Birthday"

Create a free slideshow with Picnik!

We had a lot of fun! Even though his birthday was not what we had expected it to be, we celebrated as best we could! It helped that friends and family both near and far made the effort to come to Indy to celebrate our Baby Keegan's One Year Birthday.

Our last year has been ANYTHING but boring. While we have a LONG way to go until he is fully recovered, we are working on it and look forward to another year of firsts (sitting,crawling, walking and talking). While I wait in eager anticipation, I long him to stay a baby for just a little while longer. Here is to year one and how we have made our lemonade out of some very sour lemons-CHEERS!!!!

Busy little Bees we are, we are!

The last couple of weeks have seemed to fly by! Let me tell you that since we have gotten the **Great** news about the tumor not recurring, we have started and finished round 4 of chemo which involved chemo given at home through his G-tube and are now on our fifth round in hospital (intense) chemo. Somethings that have happened since August 30th, the last time I really sat down and hammered out a post....

• We came inpatient to finish round 4, at which time our stem cell transplant lady came and talked with us. She scared the living daylights out of me! We are going to be hospitalized 4-6 weeks for Round 6, then we are supposed to live in an Apartment at RMH for 2 weeks since we will have to make daily trips to the clinic at Riley. We have to CLEAN and by CLEAN I am talking something out of ET when they hang all the plastic and disinfect the house.....We have to have the couch cleaned the blinds cleaned the vents cleaned....then the normal everyday dusting and disinfecting.....he is then going to be confined to the 4 walls of our home for 6 months! He can't leave AT.ALL! Which also means momma can't leave at all during the day......small price to pay for trying to get to the "cancer free" stage!
• I guest blogged over at Making Lemonade, one of my favorite blogs and bloggers, Carrie asked if I would do it for her Blogoversary and I couldn't have been more happy with the way the post turned out. Basically its an overview of our entire trip through life with Baby Kee, you can find it here  ( that is the first part, Carrie had to break it up into two parts!) And the second part can be found here.
• We ordered more T-shirts (in all sizes) and I ordered car decals, if anyone wants one, we are doing free shipping. T Shirts are $15, Car Decals are $3 and we still have some bracelets for $2.....you know you want some...I will even accept the money paypal!

• We got a little infection in our Button (during round 4 stay we had our G-tube converted to a button). We whisked Keegan away to Riley's ER on Wednesday the 8th, he was admitted, started on IV antibiotics and then released to come back in the matter of 3 days, Whirlwind I tell you!
• Mommy ordered Keegan's Birthday cake AND won some delicious cupcakes from ABCupcakes out of Frenchlick, we are doing cupcakes on his birthday and the cake on the weekend since more people will be able to come up on the weekend! We are looking forward to celebrating his year of life-and what a year it has been!
• There was a fundraiser held in NY NY last night, September 16th, thrown by one of my best friends in the entire world. Here are some pics of the night http://tinyurl.com/22lw8gd. I am anxious to talk to her later today and find out how the night went since there was a tornado in NY and all!

For the most part I think I have caught you up to date, I am gonna try my hardest not to let it get this far behind. I hate trying to remember EVERYTHING from the last month! Hope everyone is having a great September and looking forward to the fall and everything it entails!

September is Childhood Cancer Awareness Month

Just something to think about!
Love,

Remember: Doctors are only Practicing

I love all of our doctors a Riley, they have come to be part of our family. They hurt when we hurt and they are celebrating when we celebrate. With that said, can I just make the announcement that our doctors were WRONG. This is not to rub it in their faces but to show you that you should not just take their word for it, the are just practicing. Trust your intuition and go with it. You know how I mentioned back here that we had an MRI and it showed the tumor had grown through the worst chemo regimen possible?

Well, I am here to tell you that MIRACLES do come true! On Tuesday August 17th my mom and I made the long journey to Indy for a 3 hour MRI that performed multiple kinds of scans. We then had an appointment with our Oncologist where they checked him out before he was to start radiation on September 2nd. I knew we wouldn't have answers that day but went home with butterflies in my stomach. Around 8 am on the 18th I got a call from our WONDERFUL neurosurgeon. She knew I was sitting on pins and needles and began to tell me the best news I have heard in a LONG time. She said it appears that the area under suspicion is not tumor at all. They are not quite sure what it is, it could be contused brain, dead tumor, or just something else very weird. She commented that this is the best news she has ever been able to give us and it was sooooo true-Our God is an Awesome God!  Dr. Ackerman said most likely we would NOT do radiation and start chemo back up but that Dr. Shih would be calling me to discuss all this further.

About an hour later Dr. Shih called. You could tell he was very happy with the findings and basically in not so many words let us know that they compared acids from the "regular" brain to the area under suspicion, they were the same-if it was a tumor then you would see a higher acidity in the tumor region. The perfusion scan which showed the blood supply into the brain and surrounding area showed the exact same thing. Not increased blood supply to the area under suspicion.

Wednesday all the miracles and prayers my family and thousands around the country had been praying for  finally came true. Instead of contacting HOSPICE and making funeral arrangements I am now looking forward to chemo, the stem cell transplant and getting his central line and g-tube out. We still have a long way to go but instead of thinking of the short amount of time we have left we have been given and new chance to watch him grow up!

If this post doesn't strike any other chords with you, let it show you that a) MIRACLES DO COME TRUE and b) Doctors are not god and only "Practice" medicine.

Busy Days and Busy Nights!

Since my last post it seems I can't get a spare minute to sit down and write an "update" post. One of the problems could be that I am A.D.D.I.C.T.E.D to Nip/Tuck. In 3 short weeks I have spent all my "spare" time watching Seasons 1, 2 and am currently on 3-I LOVE it, it is my getaway! Or it could be because I am out and about shopping with my sister trying to help her find a white dress or cute white tank for our family pictures that Bee Elle Photography  is going to take....so any who I apologize for the lack in posts, we are enjoying our time at home and LOVE being able to take Keegan out mask less, he likes it so much more!

I meant for this to be an update post, of everything that has happened since the last post BUT instead I have decided that I need to reach out and once again ask ALL my friend, family, and people that LOVE us but have no idea who we are to pray. I ask that if you pray, you pray with every.single.ounce.of.your.being.

Tomorrow is D Day, or should it be M Day....we are having our 2nd MRI tomorrow to decide for sure, 100% without.a.doubt that what is in his brain is tumor and nothing else. They are using the original MRI machine that was used during the original brain tumor diagnosis to compare clean, clear images; why they didn't do this this past time I don't know. They will also be performing a perfusion scan and a fiesta scan to check as to what the tumor is made of and the blood supply (if it really is a tumor). My prayer, and the prayer I hope you all pray for us today and tomorrow, is that what they saw almost a month ago now on his MRI image was just "something" else, not tumor at all. 

We will arrive at Riley to check into same day surgery around 10:30 am Indy time, from there we wait until 12 when he is taken back for an hour and half MRI sedated of coarse, and then we see the Oncologist; but don't know whether he will be able to give us results or not.

I know I ask a lot of my readers sometimes, and I understand if you don't pray and aren't religious, but I am praying, and I am religious, and I want God to intervene and perform his miracle now more than ever-are you with me?

The Difficult Journey to a Decision

It was a week ago yesterday that we got the news that shattered our already broken world. If you don't remember check this this post? So anyway, a week has already come and gone. It has been one of the hardest weeks in Ry and I's young lives.  So here is the story and the hard yet best decision that I feel we have made for our young family. I ask that you please don't judge our decision and/or leave me negative feedback as to why we have decided the way we have, until you are put in this horrible situation you can't for sure know how you would feel. With that.....

So after I sat in that lonely conference room receiving the worst new a parent could possibly hear, I had to stew in my juices until I could talk with Ryan. You see Ry was in the car on the way to Indy to spend a couple of days with us after his couple of days at home to work. I do admit I got online (face book of coarse) and confided in two GREAT women who I look up to dearly. Joanna and Karen helped me through the first couple of hours until Ryan could be by my side to cry with me.

After Ry got to Indy we started talking I told him that the MRI showed that Keegan's tumor had grown back. I told him how Dr. Shiy sat me down and explained to me that they are not 100% sure its Medullo anymore and not some form of a REALLY bad tumor. I showed him the drawing that the doctor had done for us showing us our options, these are what our options were/are ( I should add they were stopping chemo immediately and not going to continue the rest of the cycles).....

We could:

1. Go Home-either with "help" or on Hospice (just for the record I HATE the word HOSPICE!!!)
2. Surgery-We could go in and try to remove this "tumor" but as shown it will just grow back again and why put Keegan through another crainotomy and the recovery with much higher risk of infection.
3. Radiation:
1. Full Brain-NOT AN OPTION-this would drop Keegan's IQ immediately down 15-20 points-making him severe and profound metal retardation
2. Focal radiation- This radiation would be a beam directed to the specific tumor and try to kill off alot of those tumorous cells.
4. Oral Chemotherapy-(Maintenance) is what they call it. It would be the oral form of Etoposide (this drug is known to cut blood supply off to tumors.)
5. Clinical Trials-We could look into clinical trials at any of the larger children's hospitals throughout the country that participate in them. I asked him to look into trials and second opinions at CHOP-Children's Hospital of Philadelphia, St. Jude, and Boston's Children Hospital.

Dr. Shiy also made mention that with all the genetic anomalies that Keegan has he thinks that ( and I am not quoting nor did he say he would every put this in writing) he should have never "lived" past the first trimester and should have miscarried. He has WAY to many genetic things off that don't really correlate with each other. Anyway so the whole time this is being discussed I am thinking its an even bigger testament to Keegan and who he is. He has fought to be here so we are going to go down swinging. I love this quote from Dr. Seuss that my college buddy Jenna wrote on my facebook wall:

I have heard there are troubles of more than one kind.

Some come from ahead and some come from behind.

But I've bought a big bat.

...I'm all ready you see.

Now my troubles are going to have troubles with me!

So we have had a chace over the last week to speak with our neurosurgeon Dr. Ackerman and more to Dr. Shiy along with Dr. Chang the Radiologist out of Bloomington. It has been a very hard decision yet a very easy one, we are not ones to give us, neither is Kee so we have opted not to just go home to "die". We are going to continue our fight and I hope you are there to support us.

Here is the "plan":

We decided we wanted to try the proton beam radiation out of Bloomington Indiana. You can find more information here MPRI. It is going to be 6 weeks of radiation EVERY.SINGLE.DAY. We will be living in Bloomington during the week at Jills House, its in walking distance and seems very nice! It has been reiterated to us and we are keeping it in the back of our mind that if the quality of Keegan's young life is not worth the quantity we can back out of the treatment at any time. This was a relief to hear, just in case we don't want to finish.  This was the easy decision believe it or not...the harder decision lied it the what if realm.....

What if this thing is not tumor? What if this is something completely different? Dr. Shiy mentioned that he was not 100% that it was the original tumor coming back. So he said that we could possibly do a biopsy, my thought was sticking a big ole long needle into Keegan's head, sucking out some of the tumor in a syringe and then testing it.....I was WAY wrong, a biopsy on a tumor that resides in the ventricle would involve another crainiotomy and recovery time which would slow down the chance to get to radiation. He also said we would have a hard time convincing Dr. Ackerman to perform the surgery, he had already talked to her about it.

The next day Dr. Ackerman came by, we discussed it and she said she had talked the situation over with her colleagues and thought it really was not an option thus putting it off the table for us. SOOOOO then my thought (and I said this out loud) was...what if we are radiating regular old brain tissue...that is not good. So the Doctor left and the next day we were presented with another, lets call it, "Do you want to?" So the biopsy was out of the question but both Dr. Ackerman and Dr. Shiy kept thinking about our situation and neither on of them just wanted to radiate without being 100% sure. Answer: MRI's. They are not only going to re perform the one done last week on a better machine but they are also going to do a perfusion MRI (looking at the blood flow into his tumor) and a Fiesta scan where it takes some different images of the same tumor.

I should add we also "added" the oral etoposide to our "plan" after we are done with radiation in hopes that it also helps to kill the food source, if you will, of the tumor.

While I am sad that our journey has come to this, I hold hope that either our Miracle is in the second MRI or the fact that the Proton Beam Radiation is only offered in 6 places nationwide with one being only an hour and half from home in Bloomington. I cherish each day I have left with our baby, we don't know when will be his time but we are planning on fighting like hell and hoping for a miracle.

Because of the "terminal" label, I have applied for "wishes" for Keegan. I want to take Keegan to the beach so he can feel the sand, see the seagulls and feel the warm sun on his face. This is in the works whether it be with an agency or taking him ourselves. We have family pictures scheduled with one of the best photographers I know and we are going to have Keegan dedicated at our church with family and friends surrounding us.

I am still hoping for a miracle but planning on what is to come.....