Today we met with the oncologist regarding the treatment plan for Glenn. This is not easy to type. We are transitioning to palliative care (hopefully at home next week). This will allow us to control his pain levels, continue transfusions, and spend some time at home with the kids before transitioning to hospice.
The words sound so business like, yet I can assure you the emotions run deep. So deep that it feels as if my physical body is residing on a completely different planet than my heart and soul. There is a disconnect. This reality just can.not.can.not. be. Yet it is. And the minutes turned to hours and the day brought visitors- Glenn's parents, my brother Allen, and some old dear friends. And the day brought blood transfusions, and the lifting of all food restrictions, phone calls with the kids, meetings with social workers, and even a few laughs.
I was reading a blog last night where someone described "the space between" as sort of like anticipating a train wreck. There is a choice to be made. While waiting for the crash, WILL WE crawl under the seat, put our hands over our heads and cringe? Or will we put on a dinner jacket, head to the dining car and have a glass of wine? Hoping to choose the latter. Hoping to truly live out what unconditional love means- to show up emotionally, even when it's hard. so.so hard. and the tears come far more easily than words.
Friday, October 23, 2009
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43 comments:
I love you.
-Siempre
As I be the first one to comment on this news.That is intimidating :)~
I spoke to Mom tonite and waited for the news from Uncle Harland...it seems so much harder to hear it from your amazing..strong and much loved voice. Even though they are words typed on a blog I have always heard your voice in your colums . Amy you are truley an amazing woman that my cousin Gleen has married..he married you for that unconditional love that you speak of, he married you for the unconditional love you give your children. As i am sure the many people who read your blogs daily sometimes more than once(that would be me)look to you for the insperation that you provide...you and your family truley inspire us to be better people to make sure we enjoy the little things out of life, knowing that one day those little things will be the big things. I am sad that it took this illness to bring me closer to glenn and your family but i am happy that i got to become apart of your family yet again. I can't imagine what you guys are going through but know that you are in our prayers and thoughts more often than none and that you are too loved unconditionally. God bless
Renee
P.S go get that glass of wine.....Hell make it a bottle!
Glenn and Amy
I was very sorry to hear the news about resurgence of the disease You and your family are loved unconditionally and will remain in our thoughts and prayers. I know you will chose to march into the dining car and order the bottle of wine or whiskey.
much love from Texas
bonnie, jake and wilson
Glenn & Amy - Irish whisky goes great with Irish prayers so I am doubling up on both - My Irish prayers will always continue for you all - Theresa
please know that even those who do not know you are praying for you and shedding tears for you.
We are praying for your time to be filled with peace, laughter and love (and no more crazy house things either). I am sure you will go to the dining car and order wine and possibly some good dancing music too! We love you.
The Foleys
Wish I had something insightful to say: you and Glenn continue to amaze us - all the prayers and love in the world. I hope you feel some sense of that tonight. xoxo K
Love you,
Dawn
Frozen in Emotions, overflowing here - so much love for you all. so much.
You can do this.
We can do this. Can't shake the Team.
So much more........ - Linda
The fact that you can find the inner strength to type and share this is incredible. Sending love and prayers, Greta
You two are incredible. Amy, Joni sent me this link, and I am happy and sad to have received it. Your whole family is inspiring and I am honored to have spent a little time with you all. You are all in my thoughts and in my prayers. Carol Q (Joni's neighbor)
Dear Amy -
First (and I know you know this - but you can never be reminded enough), that you and Glenn are lifted up in the prayers of countless friends and family who hold you and your kids in the very depths of our hearts. Your deep love is an inspiration to us all - and I thank you for that.
But also never forget that the Lord is also with you, has been with you and will be with you every step of the way. Psalm 23 says, "Even through the darkest valley, you are with me, your rod and your staff they comfort me." I pray that God's comfort and strength will lift you up in the days to come. But your comment about the 'dinner jackets and wine' reminded of the next verse of that Psalm. "You prepare a table before me...my cup runneth over." Don't worry about the words - just be present and God will take care of the rest. I'm so grateful that my cousin has such a beautiful and caring wife as you - you are such a blessing.
Peace and love,
Greg Buell, Chicago
Amy and Glenn - I found this tonight and wanted to post for you...I'm praying for you.
Michele
http://www.youtube.com/watch?v=kQp75TsnpSA&feature=related
Dear Amy and Glenn,
I'm a physician who has been living in-and-out of treatment for lymphoma for many years. Here is a short essay that explains how and why patients and their families can hold on to hope when transitioning to hospice care:
http://tinyurl.com/ykffmpm
May it bring you comfort and help you nourish hope for good things.
With respect and hope, Wendy
www.wendyharpham.com
Thank you to Wendy. Filled with so much love, and so much hope, for all of you.
xoxoxox,
Andrea et all
much love, hope, and tears.
xooox,
the behrmans
I read this around 3:30 a.m. ( I am 37 weeks pregnant and find myself awake in the wee hours of the morning) and tried to post something several times, but could not find the words. I read the article that Wendy posted, it made me cry even more, as I know at the young age of 32, too many families who have had to find "new hope". I can honestly say that out of all the families I have known, yours is truly unique and amazing! I know that you and Glenn will find "new hope" and that you will somehow see the bright side of things, as you guys always do. I am praying for emotional comfort, and most of all...a miracle!
Neysa
(daughter-in-law to one of Amy's many cousins)
I am almost 5 years post transplant for leukemia and often wonder how I would deal with the news you have received. You are an inspiration.
Leukemia should teach us all that every day is a gift. My father, in a quirk of fate, also had leukemia, I/we failed to make the most of his time, we failed to understand how important each day is.
Soak in the love around you, be together, and know you are not alone.
Let me leave you with one of the holiest blessings of the Jewish religion, the blessing Aaron gave to his sons:
May he LORD bless you and keep you.
May he LORD make his face shine upon you and be gracious to you.
May he LORD lift up His countenance upon you and give you peace.
no words just a thousand tears. I blew out the birthday candles on my cake last night and for the first time in 3 years the wish was not about Julia...it was for Glenn. I hope it comes true. Sending much love and strength.
xo
The Mead Family
We send you love and many prayers for continued strength and lots of peaceful family time. You WILL continue to live out unconditional love - it's not in you to do anything less. Thank you for continuing to share your journey with us, even when the words don't come easy.
The O'Rourkes
Glenn & Amy, you are in my thoughts and prayers. Continue to do what you guys do best - support each other and make the best of every moment. xoxo
Glenn, Amy and Kids....tears, love and sadness of the news we received...we hope for you all the power of continued strength...Love from Switzerland Liz, Stefan, Sarah and Alexandra
love you, love you, love you.
Darlene
Dear Amy and Glenn:
Your courage is astounding. I send you my love across the miles. Although we have never met Amy, and it has been many years since I saw you, Glenn, I feel like I have come to know you through this amazing blog. That you have come to inspire others so much as you have endured this ordeal is amazing. You and your family are a model of strength and faith for me, and you will be always. Here in my Buddhist country, all my Chinese friends will be praying in their temples-know that your light shines as far as Asia. I hold you in my heart everyday.
Love, your cousin in Taiwan,
Liz
I ache for you, I am inspired by you, and I learn from you.
You've been wearing that dinner jacket all along. You've been drinking the wine all along. May this dinner jacket be the most beautiful, and may this wine be the sweetest. You deserve nothing less.
Stefanie
Dear Amy, Glenn and family,
Your strength, faith, courage, and love is inspiring, healing and awsome. You are in our heart and prayers. God bless you.
daryl
Tears come easily. Words do not.
So glad to hear you'll be home soon, Glenn. The hospital is NO place for comfort and rest. Home may be noisy and crazy (and under water...), but at least the noise and craziness is that of your family and friends. And God knows, the food is better!! Glad to know you can look forward to "busting out" soon.
Amy, whatever any of us can do to assist with getting things ready, please let us know. I missed the last cleaning/sterilizing party, but am here if you need round 2. Also cater.
Don't do windows.
Loving you both and wishing this walk was many, many, many years from now. Whatever I can do to make it easier -- I'm a phone call away.
Love, C.S.
Dear Amy, Glenn, Sam, Chase and Colby,
Words do not come easily, but we want to thank you for sharing with us all of this time. You have traveled this road with strength and dignity all the while teaching us many lessons. We will continue our prayers for you. You are an amazing family and we are honored to know you.
Love,
Diane in VA and family
Amy,
There is so much I want to say but words do not come easliy during this part of your journey. I hope you feel the love and prayers we are sending your way. Lord's peace be with you today and all of your tommorows. Keep on loving and fighting the fight.
The Maton's
Dear Glenn and Amy,
As a nurse I always have wished for magic words at moments like these. I am sorry to hear this news. I will be praying for you and your family.
I want to say how blessed, fortunate, lucky..it has been for me to get to meet you all and to be welcomed into your amazing family.
My favorite verse: Philippians 4:6-7
Shirley from PHIT
A&G,
You have both touched my life in a way that I could never have anticipated all those years ago. You are an inspiration to me and most of those people that you come in contact with. Thank you so much for allowing us all to share in this incredible journey. Thank you and I love you just don't seem adequate, but thank you and I love you!
-nette
Amy & Glenn -
I know its no way to be and certainly not how either of you ever handle things but I am mad. I am so frickin pissed off at this thing. I walked with thousands of women this weekend in the freezing pouring rain to raise money to help find a cure for this beast. Its not enough and I just wish that it was. If it was possible to find answers by walking 100's of more miles, I would do it. I would do it for everyone that I know that has had to deal with Cancer and especially you. You are such an inspiration to me. Someday, I hope to model your behavior. But in an incredibly unproductive way, I am mad.
I love you guys. xoxo
The Bonnell's are praying for you.
Stacey
Gulp...That at this time, you find the courage, strength and love to share this with us is amazing. You are amazing. You and Glenn are amazing. You, Glenn & the kids are amazing. Our hearts ache for you, our prayers continue. Glad that life gave us the incredible opportunity to be your friends. We are always there for you and will join you as you pick up that glass of wine. Hugs from Frisco and sorry that we are not there by your side.
Love,
Kuntal & Pat
Glenn and Amy,
Very sorry to hear of this latest news. You are in our thoughts and prayers.
Love,
Cousin Matt, Bonnie, Collin, and Henry
I have written and re-written atleast 10 times... Seems any words are so insignificant and fall short of what you are thinking, feeling, experiencing. Your courage and strength is amazing (at times I am sure it doesn't seem that way, but it is!). You will continue with the unconditional love that you have been sharing all along this journey - you are incapable of anything less. So many hopes and prayers going out to you. Feel the love as you are sharing the love.
xo, Trisha
Dear Amy and Glenn, Samantha, Chase and Colby,
You are beautiful! Your unconditional love has forever changed my heart... Amy,I have been touched beyond words by your ability to open your heart and share. Your journey is making me a better wife, mom and daughter. Glenn, your journey, besides totally inspiring me, has made me tone down my feelings for the NY Giants, realizing, if a bright guy like you likes them...I must be missing something!Samantha, I'll never forget how incredible you were getting those jars set up to collect the coins... I wanted to hire you! Chase, you have taught me to never give up....you have a gentle strength, what a gift! Colby, you have taught me that those brown eyes of yours can melt any heart in an instant..and when you add in that smile...unbelievable! You have all taught us to laugh when we only want to cry and to put that dinner jacket on...every day. You have allowed us to be there with you through the ups and downs of these years...and now...you are stuck with this team forever...because now, our hearts have been knit together...and even leukemia can't touch a bond like that. It can mess with the body, but it can never touch the love of the heart or the depth of the soul. Placing you all in the palm of His hand...wishing I could fix it. So much love...
Amy and Glenn,
It’s so hard to comment and you guys are going through so much but I wanted you both to know we are thinking and praying for you as well. It must take such strength to put your recent experiences into words and share them with everyone. We are grateful that you make such a great effort to include your friends when certainly the words can’t come easily. I hope that you take some comfort in the fact that your experiences have inspired so many to really take a look at what really counts. You have touched many and have taken the time to share such a difficult journey and you have done it with dignity, love and amazingly, humor. I think that through your example we learn to take less for granted and value the time we have with the people that matter most to us. I know I now think twice when deciding how to schedule our weekend or how I interact with Evan when he is chattering non stop to me and we are in the middle of our usual before/after school rush. I am so much more likely to stop and really engage with him, enjoy him and to make sure we have time together as a family. I recently read an article that talked about how it would be great if you could get that “one” moment back, essentially a “do over”. Unfortunately we don’t usually get a “do over”, but I think you have shown by example how to stop and look for the moments or opportunities that really matter and take the time to actually live them.
Please know that you and the kids are all in our thoughts so often.
Lisa, Dylan and Evan
http://www.cnn.com/2009/LIVING/10/24/o.redo.one.moment/index.html
"I see friends shakin' hands, sayin, how do you do. They're really sayin....I love you."
Praying, praying, praying.
Bob & Marci
We continue to pray for all of you and your comfort, Glenn. Words are so hard to write for all of us. Just know that even though words aren't expressing all we are feeling that our love and support is so strong and waiting to embrace you whenever the time is right. You are touching all our lives in so many ways. We love you friends- we are here for you.
Jill, Phil, Ryan and Matthew
It goes without saying that you all are in our constant thoughts and prayers, especially at this time. Thank you for sharing this journey. Thank you for changing so may lives around you. Thank you for your words of inspiration. Thank you for showing us hope against adversity. Thank you for so so much more. We love and admire you as the wonderful people you are and the loving family you are raising. May God's peace come to you...
All our love
Lewanne (Buell) Nettles and family
Just wanted to say, "we love you" and are praying, praying, praying...
Hugs,
Kuntal & Pat
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