Wednesday, August 4, 2010

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.....


  1. I support you! I'm here in Michigan (not to far from Indiana) and my husband is a physician if you ever need phone calls made, references checked we are more than willing to help you! All our love!

  2. Beth, Thank you so much for sharing these times with us. You are such a strong person, and I admire you so much for that! I am always thinking and praying for Keegan and your family. Keep on fighting!!!

    Julie (Ransom) Dunn

  3. I wish you never had to be faced with these kinds of decisions. And I wish that I could hug you.

  4. Beth, I cannot imagine what you have been going through. I know that I would be like you and do what ever it takes to help my baby. He is such a fighter. He looks like such a happy baby. I would love to come see you guys when you are home. You have been such an inspiration to me. Love Amanda

  5. Beth - Keegan is a miracle. He is an amazing little boy, a RESILIENT little boy!! If he wasn't supposed to make it past the 1st trimester, it's a miracle that he is with us today, and has touched so many lives.

    Kee is here for a reason. He's an amazing little boy. And you are an amazing mother. Good luck with what's coming next, and never hesitate to ask me for anything :)

  6. Beth, you are such an amazingly strong woman. I wish that you would have never had to be so strong though. I wish that you could just know that Keegan was going to be here for the rest of your life. He is such a special boy, and though I have never "met" him, I can tell you that his smile can light up a room. I will continue to pray for the miracle that you so much deserve.

  7. Beth- Keep on fighting. You are an amazing mother and extremely strong woman.

  8. I'm here for you, Beth.. whenever you need me. *hugs* You're an amazing mother to an amazing kid. We're praying for miracles.

  9. Beth, I pray you get the miracle you are looking for. My heart goes out to you and your family. Keegan is a beautiful baby and a fighter. He is lucky to have parents that will fight for him. I hope he gets his day on the beach in the sun. My prayers are with you all! God Bless

  10. beth, ryan, and baby keegan:

    i am so happy that you guys have made a decision that brings you comfort and peace and also provides keegan with the chance to thrive in your love! i miss you guys already, and most of all that little wudgie smile that greets me when i walk into his room!! you walked into my life for a short time but will remain a part of me forever!

    long live the hippies! :)
    love, nurse julie

  11. Hey Guys!
    Tough decision for sure - not sure how anyone could ever comment on your plan unless they were in your situation! Hope & Prayers.

    Nana said she is emailing you soon :)


  12. You guys are so strong. You amaze me every day... that little boy of yours is such a miracle and blessing. He has taught so many of us such wonderful things about strength and love.


  13. OH Beth... I'm praying so hard for you all and for this sweet sweet child. You are loved and your child is an angel that is touching so many lives.

  14. I am at loss of words, but wanted to extend my prayers and well wishes for your little sweet pea. He is just a doll baby. I don't know you personally, but you have my 100% support.

  15. Beth, I can't even imagine being faced with these decisions. I commend you for fighting for your little boy. Please let me know what we can do here in Bloomington. Seriously. groceries, home cooked meals, any errands you need to run, or just someone to talk to. We can go for walks around campus for fresh air, you're more than welcome to go to church with us (we even have a special needs nursery, if Keegan is able to leave). If there's ever a time when I'm not available I will find someone to help you.

    You are definitely not alone here!

  16. We are praying for you all here in MI.

  17. Keep hoping for a miracle! I know I will!!! Hugs to both you and Ryan, and even bigger ones to little Kee!

  18. YOU GO CHUPP FAMILY and fight! We love you and what you feel has parents is the best!
    Love you Pam and family

  19. Keep on keeping on! You are in my constant thoughts and prayers and no matter what anyone says you are doing what you feel is best for YOUR family and that's all that matters. Enjoy those sweet smiles and precious moments that you get to embrace him. Cherish every single second you have together as a family. You are such an inspiration and Keegan is such a miracle already that whatever is God's will, you have all touched so many lives. Stay focused and don't put down your bat! Stay strong! Love, Heather <3

  20. I'm praying for strength for you and Keegan to fight.

  21. You are such a strong woman! I am praying for patience and strength to be sent your way.

  22. Beth, I totally understand and support your decision to fight, fight, fight!
    I am telling Keegan's story to EVERYONE I know and the prayer response is spreading throughout Southern California.
    You are a brave family and he is a wonderful little baby!
    We are all behind you 100%.

  23. I cannot imagine what you guys are going through right now. You are truly amazing.

    You're in my thoughts and prayers. (((HUGS)))

  24. I am praying for y'all every day. You are so strong and wonderful. Keegan is so blessed to have such amazing support and love. *hugs*

  25. I just heard the news...I first want to say Iam sorry!! If there is anything u need please let me know. I am at lost for words and want u to know I will be praying for Keegan!! Just know that ur decision u made though Iam sure not easy one, is the best, b/c he is ur son and ur doing the best u know for him. god is w u!!!

  26. I will keep him & your family in my prayers. Don't ever lose hope.

  27. I've sure been praying for your family a lot. I wish that there was more that I can do. Just remember that everyday you have him... is time. Time is a blessing and I hope that your time runs out LATER rather than sooner. I love you! Hang in there and have faith, faith like you've never had before! Faith in every possibility and then put your trust in the Lord. You are doing awesome and I will always, always, always send my love and support to keegan and his amazing family!

    Love always and always.

  28. Beth,
    thanks for sharing this with all of us. All I can say is we are praying for you all and Keegan for this miracle. You all are wonderful parents and I cannot imagine being in your situation so I will pray as I would if he was my son with all my heart and loving going out to you all and pleading with God to let this little boy have his miracle.
    Sending you hugs and tons of prayer!

  29. i second what sassycassie said. i wish i could hug you. you have the strength many women dont have and the few that do, dont realize it until they are faced with something like this. miracles happen. my great uncle was diagnosed with cancer and told he has four months to live, at the most. he lived another 22 years and my life wouldnt be the same without him. miracles do happen. we all support your decision to fight for your child. stay strong! you are in our thoughts and prayers!!

  30. I have lived in the valley of the shadow of tragedy with genetic anomalies with my kids and fighting for them against all odds. God bless you, and rest assured, you will be in my prayers.


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