Thursday, May 19, 2011

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!!!!



  1. im praying with all my might! Keegan is a strong lil guy HE WILL BEAT THIS!

  2. You are right, no parent should have to live through that once let alone a second time. But it sounds like your family is very strong and that you have a very strong fighting little boy(that btw is adorable!). Just keep on praying to the same God that healed Keegan once, can do it again. Pray that he will give you guidance in making the best decision for your family. And I will also continue to pray for your family and baby Keegan. As far as raising money can you sell bracelets again? If you do still have some or start reselling them, I would like one. Keep fighting baby Keegan!!

  3. "keep calm and fight on" < LOVE this. :) Beth, you and Ryan are so strong and I admire your courage. I think it is probably a painful and futile exercise to try to figure out "why" all this is happening to sweet Keegan of all people. Sometimes- most of the time- these things just don't make sense to us. Whatever the reason, I know you guys will continue to make good decisions about Kee's care and I will add my prayers to yours that you have wisdom and peace in your decision making. I'm here for you... all of us girls are... if you need ANYTHING. Love you!!!

  4. I'm so sorry you have been faced with all of this. I know you've been fighting so hard for Keegan. I hope that you find peace in whatever decision you make! I'll be thinking of you all.

  5. I am praying for your family, specifically for strength and peace as you make decisions.

  6. Praying from Canada here! I have been thinking of your family constantly...I keep looking at Keegan's sweet face and wondering...why??? He Is such a strong little boy who Is loved very much by so many people! You seem like such a strong mother and women. IF I had any money to donate I would give you every penny I had! I will do my absolute best to donate some money when I've got It....I can't believe anyone could or would say anything hurtful to you! This has got to be the worst thing a parent would ever have to do, to make such a decision...My thoughts and prayers are with you!! I just know he can beat this! He Is a beautiful beautiful little boy!

    Mandy and family

  7. I'm really sad to hear the news. I know this must be so hard on you all. I'm very familiar with that saying... God if you're so almighty, why? But I'm also very familiar to him showing me just how almighty He is! I'll be praying for you all, for strength, faith, courage, patience and Healing! And know that we all love and support your family and the decisions that are being made! Also, I'd like to check with a few places around Evansville, Holiday World, CMOE, etc. And some local businesses also for this ok?

  8. Dear Keegan's Family-
    From another set of parents who have faced horrible decisions, we send you a huge hug. Just reading your post made my stomach hurt. We have no words of wisdom, or wands to wave....but one wise doctor told us at one point (paraphrased)...these treatments and protocals are options, but try to choose one that you can live with, with no regrets... God will give you the grace to do so. We will continue to pray for His grace for you.
    Clayton had a good buddy and roomie named Wesley Jaeger with Medulloblastoma. He also relapsed and I believe was treated with the antibody in NY. He was also on a hedgehog study. His parents are Lisa and Duane, and you can find his caringbridge here
    Our Love and Prayers for God's grace for you all,
    Clayton Shuck's Mom and Dad

  9. Beth,

    I'm so sorry you are going through this! You are an amazing person, mom, wife and friend! I know it's hard to trust God right now, you may never have the answers to all this madness but try to trust that His plan is the best plan! He will carry you through these hard times. Go to Him with everything and he will help you make the right decisions. You and Ryan have been such an encouragement to so many people. The Seymore family loves you guys so much and we will continue to pray for you guys!

  10. I am so sorry you and your precious Keegan are going through this. I don't know you but I will be going before our Lord everyday for you. Keep fighting and loving on that wonderful child.

  11. Beth I am so so sorry you are having to deal with this. I know there is nothing I can say to take away this pain you and Ryan are feeling, but I do hope you know that your family has been in my thoughts and prayers constantly.

    I'm praying to God to give you the strength to make the best decision for Keegan and for your family.

  12. There is no easy decision, and if I were put in this situation I would feel so burdened with the weight of this decision, as I'm sure that you do.
    One thing that I think of, though, is that the third option is one with the most opportunity to help others who may have to deal with this same situation in the years to come. While it may seem terrible to put your child into a place where he would be "an experiment", any findings that result from the research and studying could aid in finding a CURE! And how amazing would a cure be?!

    This was not meant to be a "for the greater good" pep talk, I'm simply offering a point of view about one of the options. Your family is in my prayers.

  13. Praying for Healing! But ultimately may God grant you the serenity to accept the things you cannot change! Claim the Healing Power of Christ!!

  14. Our gracious God of love,
    I lift up baby Keegan to you and ask for your healing. We know that you alone heal us and we trust you to heal baby Keegan. Thank you, God, for all of the doctors' wisdom and insight you have provided to monitor Keegan's health. I pray that you would continue to guide these parents toward wise decisions and people who can help the process. God, be their comfort in the middle of the night and hold them close to your heart. In Psalms you state that you are close to the broken-hearted and bind up their wounds. Lord, I know that you are faithful to fulfill that promise with this family. Father, renew their strength and faith in you as they perservere through this time of suffering. Most of all, I pray that you would be their hope, always going before them. We love you Lord and we thank you that you always hear our prayers and care for our every thought. Amen.

  15. I am so sorry to hear your news and I can certainly understand how hard it must be to get up again, trust in God and keep fighting. I will pray that you have continued strength Beth to keep doing what you have to and I will continue to pray for healing for your precious little boy Keegan.
    I will also pray that somewhere in all of this you and your family will find some peace...


  16. Beth I am so sorry for this news. I too have asked God the why question, many, many times and all I keep getting back is, 'Trust ME'.

    I do know that God loves you and loves Keegan even more that you do. I do know that He is crying tears because of this pain you are going through. I do know that there is a bigger plan, one we cannot see but He knows it.

    I love your faith and trust in God and how you are still turning to Him. Keep your eyes on Him and He will guide you into the best solution for treatment. I will continue to pray for you all and for direction as to what action to take.

    Have you talk to your doctor about diet? I know there is a specific diet for people with cancer.

    Don't give up, keep banging on the door of healing and claim it for Keegan.

    Praying and praying,

  17. Wow what a strong family you must have. i have my beliefs about god, as does everyone. i am not the type to talk about my beliefs,or push others in any way. But i will say when you feel god has given up and left your side,what he is doing is carrying you thru the rough waters. this is the time you need to pray even harder and thank god for all he has given you. i also pray things get better for your family. and your son is amazingly strong.

  18. I know you've probably already thought of this, but have you considered contacting the Ellen show people for help, Dr Phil? I've been sitting here for a while trying to come up with things. Can restaurants In your area give you a space to have a fundraiser breakfast or something, or a dance? Can you contact your local police dept or fire dept to put a fundraiser together.

    My daughter was born with birth defects that required a few surgeries and my husband lost his job and I was unemployed so I understand that part of It. Praying for you guys always.


  19. I just found your page from a link on facebook. I read your about us page. I currently have a 7 and a half month old and I can't imagine how devastating it was for you to receive that diagnosis, especially so young.
    I will be praying for you that God gives you the answers you need to make the best decision possible for all of you. *big hugs*

  20. I just want to say that I am simply amazed by how much Keegan has impacted the world for Christ in the relatively short time he has been on this earth.

    God has big plans for him and for you as a family.

    You are in my prayers constantly.

  21. I have no wisdom, no deep thought...just wanted to say I am so sorry for all that you and Keegan have gone through and are still facing. I will keep you all in my prayers.

  22. Beth,

    I'm so sorry that this is happening. Sometimes we can't see God's plan until years later, but you have to be strong and look to Him for support. Along with eh thousands and thousands of prayers from loving "friends" all over the world, God will help you family through this and bring you all the peace and triumph that you need!

    I will continue to pray daily for your strong little man. (((HUGS)))

  23. I am so deeply sorry for this news...know you are in our thoughts and prayers from Iowa! We admire you for your strength and for Keegan's strength- he's a figther! And he will prevail! Hugs!

  24. My heart breaks for you. As a mom who also had to make horrible decisions that no parent should ever have to make, I'll share with you what got me through those times. Know that whatever decision you make-is the right one. Don't let anyone tell you otherwise. You know your child better than anyone, you love your child more than anyone else Whatever decision you make IS the right one. God will carry you through even when you feel he has abandoned you. We are praying for you and your family.

  25. I found your site off of baby Sam's site, which I found when a girl stole all their son's information that I was fooled by, but anyway, I wanted to let you know I will be thinking and praying for your son, I'm so sorry you have to go through something like this, and I know you will make the best and right decision for your son, he is a fighter never get discouraged, god will always follow you and your family. It's hard raising a sick child, no one should ever have to make critical decisions like that. My daughter doesn't have a cancer, but she has a bowel disorder where she can't eat anything so she is IV nutrition dependent and a transplant candidate, it's hard, and I always myself wonder why my baby? It seems unfair, but god gives us nothing more than we can handle, you and I, and many mother's are gifted with these beautiful children who are so strong and beautiful, as sad as it is to watch them be sick, they are truly loved, and cared for <3 Bless you and your family, and good luck with everything.

    Love Marybeth.

  26. Hi Mom, I will definitly be praying for Keegan and your family! My family is with you on this journey because my daughter has neuroblastoma, she was diagnosed on 12/23 and it is very unfair I agree with you! I am walking this journey with you and if you ever need to chat, you can find me at

    Shannon, Emily's Mom

  27. Anyone who would leave you a negative comment right now, is a god awful person. I can only begin to understand how you must feel with the choices you have to make. I agree that imagining making your child's abilities more limited, only to keep him here, is a hard pill to swallow. You wouldn't be the first person to do it, and i'm not even sure many would call you selfish for it. I guess you have to kind of take yourself out of the equation and focus on what would be best for Keegan...which obviously living is, but living so he gets to enjoy life could be difficult. It's all going to be difficult. Sick kids are never easy, on them or you or anyone involved.
    I'm just so so sorry that it was bad news, it's not fair, and this is why I can't for the life of me, be religious. I admire people with faith so much, but I couldn't do it. I'd be cursing God left and right for this happening to my child.
    I do think that the best decision is the 3rd, but again, my opinion doesn't matter. I'm hoping you can find peace and comfort and make a decision that you feel is best for Keegan & your family.
    I will be thinking of you.

  28. We are praying for you.

  29. So sorry your little guy is going through so much, you all are very strong, our prayers are with you.

  30. thinking of you and wearing green today.

  31. I wish I had something awesome, insightful and wise to share with you right now, but sometimes there are no words that will do what needs to be done.

    I want to say I'm praying for you right now, but I'm really crying for you. I'm so sorry that you have to make decisions like this.

  32. I came over from Child of God's blog. I am so sorry for this news. I am trusting God to carry you through and give you wisdom to face these hard decisions. Peace, strength and grace to you all.

  33. Continuing to pray for you during this time. Praying for God's wisdom and guidance and peace.

  34. Beth,
    Our family heart is so for your family right now. As you know with our daughter's headaches, it grew to now her living with 5 headaches at one time, 24 hours a day 7 days a week for now 3 years with no hope of ever being pain free again. Now, please understand, this in NO WAY compares to your fight against cancer with your son, but I want you to know from a mom that wished my daughter could do and be like other kids, you must keep leaning on God.
    My uncle lives with cancer cells in his blood and has been told for years they do not know how he is still alive but we know.. its God! God's not done and God decides! Your son is amazing and a blessing and gift from God, and he hand picked you all to be his parents to give him life, love and purpose! You have reached so many families and touched me personally. When I wanted to be "mad" at God or fed up or give up, I remembered you! I would break down and cry every time we got bad news or the meds wouldn't work. Finally I had to say, God she's yours! I can't do this anymore, living one day at a time and thinking about her illness. When I did this, he said, THEN DONT! You can trust me, love her and teach her to LIVE her life with her adversity and teach her how to look to me for strength, faith and courage so I can use her. that was hard but when I did, everything changed (and yes she got 3 more headaches from the 2 she started at when this happened.. she lives 24/7 nonstop pain and cannot run, read, hop, jump on trampoline, flip or sometime cannot do simple things but we had to teach her to live with what she can do instead of dwelling on what she cannot.)
    Beth, what you have to deal with and decide is something no parent should but please remember that God picked you all as his parents because he knows you will look to him and do the right thing. God will protect you. We here are all praying and you will win this fight with God's help and your friends and blog family. its okay to scream, cry, vent and get angry...but remember to enjoy those special moments, smiles, giggles, milestones and laugh with him. We love you dearly. I hope my post isnt upsetting and its fine if you keep it private and do not post it publicly. Feel free to email me anytime! Anything you need, just ask, I'll do what I can! Hugs! Jen Wright (The Blog Cafe designer)

  35. i am just sick to hear this news... don't know what to say... but i will continue to pray...

  36. what about a corn hole fundraiser and silent auction - i went to one about a year and a half ago for someone who was battling cancer and thought it was cool...

  37. So deeply sad to hear the news! I recently found your blog through Sam and was just so heartbroken for you when I read the last post. I realize there are NO WORDS that will bring you comfort but I will continue to PRAY hard for your sweet boy and your beautiful family. You are an inspiration, and a remarkable mother, one that humbles me and I look up to.

  38. Beth, I have no words, but please know you all are in our prayers. Abby is saying special prayers for her friend Kee. Love, C.

  39. Praying for your sweet baby Keegan!!! Will share with my small group and friends out of town, so more and more people are praying for him.

    For a fundraiser, buy a puzzle that would be special to have and let people sponsor a piece with a certain amount of $. (ex. $10 a piece) then they give you a message to write on the back of the piece. When you put it together, Keegan will have a memory for all those that cared for him when he is older. You can do a similar thing with a wooden block set. I have several other ideas. Feel free to msg. me

  40. Praying for peace, for wisdom, for strength, for faith. For healing, for your finances, for your marriage, and for your precious little boy.
    There are no words that I can say. I don't know why this journey is life's chosen journey, but I do know that God will walk with you through it. And I know that there will be thousands of us championing you on, praying and crying out to God on your behalf. My thoughts and prayers are with you as you continue to fight (AND WIN) this battle!!!
    Fundraising: what about some type of 5k or something? Charge a fee to run, but then maybe tee shirts that say Team Keegan or something?
    -bake sales?
    -maybe yard sales where all your friends/family donate items to sell
    -sometimes local restaurants will ask for donations from their patrons, like a dollar or soemthing. We recently donated to an injured soldier and the funding ended up being close to a thousand dollars
    -I will keep thinking...and PRAYING

  41. Beth, you know Keegan intimately, better than anyone. If Keegan could talk to you, what do you think he would say to you ? How do you think he would want you to proceed at this point? If you were toddling around inside his precious little body, how do you think he would feel about each of the options you outlined for treating him ? Mommies have instincts, Beth, go with your gut.

  42. Have you contacted St. Jude's Children's Hospital in Memphis, TN? I've heard so many good things about their research and treatments for children's cancers.

  43. beth and ryan,keegan
    my family loves all of you so much.i have worked with peggy ,keegan grandmother for along time. I believe in all my heart that god has to help keegan. my family every day prays for keegan.Beth my family will try to help if i
    have to go to every ones door I will do it.


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