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?



Are YOU on Team Keegan?

While we are still praying for miracles and hoping for the best we should unite as one and continue to fight on. So with that said here is the plug. We are still selling T Shirts, Bracelets and Car Decals. I have (2) Youth Larges, Adult Smalls and Adult Mediums. Shirts can be purchased for $15 a piece. Bracelets are $2 and Decals are Free with any purchase. They can be mailed anywhere. I mostly accept paypal but can arrange something different if needed.

Thanks!

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!)

Pampered Chef

A follower of our story who happens to be a pampered chef consultant decided she would like to do an online pampered chef party to help us with bills and possibly hiring someone to come in and clean our home while Keegan is on Hospice. Below is the link to the online party. Feel free to peruse the site. If you can buy something great if not that is fine too :) Thanks so much for all the support. A longer blog post is coming soon, I just am still searching for words....

Pampered Chef Online Party

Unimaginable

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

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

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

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

::Deep Sigh::

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

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

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

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

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

(photo courtsey of : Whisper from the Heart)

BIG News!

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

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

And that makes 57 gray hairs...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stay Tuned for a BIG Announcement!