The blog entry I never wanted to make. Yesterday Jed had a bone marrow aspiration. We got the results last evening. The cancer is back in his marrow. We are devastated. Because of the infection in his lungs receiving more chemo would just be torture. I have decided to stop all cancer treatment and make him comfortable for however long we are lucky enough to have him. He has fought a long brave fight and deserves to finish this battle with no pain or fear. He is awake and alert a very little bit. He did talk to Danny and I over night, just answering yes or no or asking for a drink. I am not telling Jed that we stopped treatment. If he asks me I will tell him that we are trying to fix the infection and make him feel as good as we can....end of story. I see no reason to scare him. He is starting on a fentanyl drip sometime today. I know he will wonder what's up with all the visitors he will be getting. I have told him everyone wants to see him for New Years. He is very aware of how bad the infection is. If at some point he starts to really ask me questions I will answer them as honestly as I can. I know so many love Jed and we are grateful for that. You may visit but I am asking everyone to please control their emotions while in his room. I do not want him scared or worried about others. I am sorry many of you are finding out this way.
He is such a good boy, so sweet and loving and so very tough. I cannot yet even think about how I will live without him. I can't imagine a world without him in it.
Thank you all for the many years of love and support. It has meant more than you could know.
Love J & K
30 comments:
Oh Kristin...my heart aches for you and your family. I am so angry at this hideous disease.
Many prayers for you and your family.
Christina - Megan's Mom
We love you and need you. You will do the right things just as you have always done. We will be here for you always. We are a strong family and jed is loved fiercely.
We are here for you and your family, atoms words are so true. You are so fortunate to have such a loving family. You can depend on all of our support as well, anytime of the day or night,Jim and I just wanted you to know how much we love you & Jed..
My heart is breaking for you, Jed and your family. You continue to make the best decisions for Jed, no matter how hard they are for you and that is the best any mother can do. I know there is nothing we can do for you right now that will help, but we will hold you close in our thoughts. We are so sorry.
Sue
I love you all so very much -LV
Kristin,
My heart is breaking for you and
tears are running down my face!
Please know that you and the
whole family are in my prayers
and may God have his arms wrapped
around all of you.
Love, Beth
Kristin,
There are no words. The only thing that I can think of to say is that God is watching us.....from a distance. I love you all. You are in our thoughts and prayers.
Alisha M.
I am thinking about you guys <3
Love, Kait Sawyer
Kristin - I'm sitting here trying not to cry in front of Thomas. I have been thinking of you and Jed constantly for the past couple of days, knowing how awful these infections can be. Jed and You and your whole family are such amazing warriors - and Jed is so so very lucky to have you for his Mom. Although we've never met, you know how close we feel b/c of our boys and the horrendous battles they have been facing almost their entire lives.
All I can keep thinking is how damn lucky he is to have you by his side on this journey. Hugs and hugs - and much, much love to you.
Lisa M. - Mom to Thomas
Kris
Me and aunt Kathe are here for you and Jed for what ever reason.
Love from both of us.
Uncle Jack
I can't stop playing with my snowglobe from Jed. I hope he feels the warmth from my hands each time I pick it up and make it snow. I love you Jed. I love you Kristin!
If everyone had a Daughter just like you the world would be Good LOVE, HOP
Kristin,
My heart goes out to you and your family. If there is ever anything I can do please call. You are such a strong mother doing what a mother needs to do. Jed will always be with you. God bless you and your family. Jed will ALWAYS be with you! We love you, Laura and Christopher
KRISTEN
YOU ARE SO VERY STRONG, AN ABSOLUTELY WONDERFUL MOTHER. YOU AND JED WILL BE IN MY THOUGHTS AND PRAYERS EVERY MINUTE OF THE DAY.
GOD BLESS YOU AND YOUR FAMILY.
LOVE
PATTI KELLER
Kristin
Wishing I could more but am sending lots of prayers your way. I am in awe at your strength..You guys are an inspiration and I'm sorry that you are suffering and hurting right now. Praying that God wraps and surrounds you with love and peace and more strength for the difficult decisions you have to make.
Robin
Everyone from PSU is praying and thinking of you guys. Jed means so much to us and we're so blessed to know him and your family.
<3 Krista
Kristin,
Our thoughts and prayers are with you and your family! Jed is a special person and will continue to be an inspiration for all! May God watch over you and your family!
WITH LOVE,
Joe
Jed is one of the strongest kids I have ever met. He and your family are beautiful people inside and out and I am glad I have met each one of you. Jed and your family are in my thoughts and prayers.
With lots of love,
Megan Mathews
Kristin,
I am so sorry to hear this news. Jed is the greatest, bravest kid I have ever known. My heart and love goes out to you all. Jed is a warrior, and is lucky to have you, dan, and savannah as such a loving family.
<3 Dan A
I have been checking the blog the last few days waiting for something to post... not expecting to read something this. It brings tears to my eyes. You guys are unbelievable fighters and lovers! Jed is blessed to have such a strong mother and you are bessed to have such a cool little man!
I am so sorry and sad and my heart just aches for your family! I really hope that Jed is comofortable and surrounded by all his family and friends.
I wish a happy new years to your whole family Kristen.
Always thinking about you & Jed!
Aunt Ann and I have heavy hearts ...our prayers are flying your way...We send our love as well.
Janice J:>(
Kristn, Danny and Savannah,
I am so incredibly sorry to hear that your years-long battle has come to this. Jed is one of my favorite kids to take care of (even though I never get to!). I will be back at work this weekend, and will absolutely be stopping by your room. You guys are in my thoughts.
Love
Carol
I am praying for you and your family Jed. Sending lots of Gamma Phi love your way!
Kristin,
I don't even know what to say- it just stinks!! I am so sorry. Jed is soo lucky to have a wonderful mom like you- you have been so awesome through all this! You guys are in my prayers.
Jenn (clinic nurse)
Kristin,
There are few words that can be said at this point. You are an absolutely amazing mother who has given more love to her son in his 12 years than most can share in a lifetime. You have done everything possible to make Jed's life as joyous as it could have been. He is an incredible young man and we are thankful for every minute that we have had with him. We will always cherish the fact that you and your family have touched our lives. Please know how deeply we ache for you and that you are in our thoughts always and forever!!
The Althoffs
KRISTEN
MAY GOD WRAP HIS ARMS AROUND YOU AND SURROUND YOU WITH LOVE, YOUR STRENGTH ASTOUNDS ME
KEEPING YOU IN MY THOUGHTS AND PRAYERS
LOVE
PATTI
Kristin
My heart is breaking for you and the decision you had to make. Please know you and Jed and your family are in our prayers. Sending lots of love from Massachusetts.
Jen
All day long I have wondered what to say, but I know this... Jed is an amazing kid who has already had such an impact on everyone he knows. We love him, we are inspired by him. Jed has changed my life, as has your family. Your family is beautiful. Few people have such strength, but your entire family has more fortitude, passion, and strength than anyone I have ever known. K- You are unmatched. I can hardly say more. S- You are wise beyond your years, a friend for life, you are younger but I look up to you so much. D- You are the sweet, kind man, every family needs.
We will cure this disease.
I can be there tomorrow. Let me know.
All my love. Every ounce.
-Christie
Jed is such an incredible kid. Everyone who has had the opportunity to meet him has been influenced by the person he is and the family that you all are. you are such an amazing support to him, you are an inspiration to anyone that knows you, and anyone that hears your story. He has been such a fighter for so long - you all have been. You have many people here for you, hoping for you, praying for you.
We love you all.
amanda, gamma phi
Kristin,
I have been away for the Holidays and haven't had much access to the internet, I was not expecting this post, my eyes are filled with tears and I want you to know I have not stopped thinking of your family ever since I met you in Carlisle, I have kept Jed in my prayers and will continue to do so, I pray for your family, there are no words I can type to tell you what my heart is feeling.... Sara Liberte
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