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?



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