Thursday, October 14, 2010

Our Little Warrior

Since November of last year, our little warrior has faced eight rounds of high-dose chemotherapy, seven neutropenic fevers, surgery, fourteen rounds of radiation to the abdomen, one round of immunotherapy, and one round of Accutane. Most recently, she completed an additional two rounds of medium-dose chemotherapy and eighteen rounds of radiation to the skull at MSKCC. Jordan has endured all of this treatment with a strength and spunk that I find inspiring.

Our plan was to let Jordan recover from the MSKCC treatment and then go for scans late next week, but Jordan has not been feeling well. Over the weekend it seemed like she was fighting a cold...this week it became obvious something else was going on as she was extremely lethargic, sleeping most of the day and not walking. We went to the Morristown clinic yesterday and they determined Jordan had pneumonia as well as excessive sleepiness post skull radiation. They hospitalized her overnight and started Jordan on antibiotics for the pneumonia and steroids for the radiation side effects...the treatment has definitely helped her perk up.

More concerning, though, was one of Jordan's lab values. Jordan's LDH was 2,000 last week and 4,800 this week...the upper limit of normal is 300. A high LDH can mean a lot of things but it in Jordan's case we were worried it meant the neuroblastoma was growing. Our wonderful oncologist at Morristown pulled some strings so Jordan could get a CT scan today and we would not have to wait another week to find out what is going on with our little warrior.

The CT scan showed the neuroblastoma has spread to Jordan's liver. Our doctor at Morristown consulted with our doctor at MSKCC and has determined that Jordan's cancer is no longer curable. Jordan was discharged home and we have an appointment with hospice tomorrow. Our sadness is indescribable but we are focused on enjoying our time with our precious daughter.

Our faith in God and the love and support of our family and friends has given us the strength we have needed for this journey. We are not very good at acknowledging it or responding...most days I can just manage to get us dressed and out the door...but all the emails, posts, texts, calls have meant the world to us. Thank you for supporting our family and for praying for Jordan.

16 comments:

Erin said...

Our hearts, thoughts and prayers continue to be with you guys during this time. May you have may additional moments of happiness and love with Jordan. What a blessing she is! We love you!!

Michelle said...

Kristen, My heart is broken. So, I can't even fathom what your heart must be feeling..... not even sure what to say. But I wanted you to know I am praying for you and Craig and Jordan, as are thousands of others. And I wish there was more I could do. I hope that each day can be filled with love and joy with her. She is a beautiful gift.

Ashley said...

I know there are no words that can ease the pain you and your family are experiencing, but please know there are people (complete strangers) praying for and thinking of you. I cannot fathom the heartbreak and devastation you guys are enduring. No child should ever go through what Jordan has gone through.

Laura's Mom said...

My heart is broken for you. This is a most horrible, sinister beast of a disease which I know from own experience, losing my beloved daughter Laura to it. Hope can never be extinguished but yet now each moment needs to be treasured all the more. With hope for much time yet to enjoy her smile, her laughter and every possible moment with your precious daughter.
with tears brimming, Mara Stiles,
Novartis

Helen Rehm said...

There are no words . . . I am one of those complete strangers who have been following Jordan's fight all year and praying for all of you. I am a mother myself and cannot even begin to imagine what you are going through. Please know that I am among many who are praying for Jordan, you, and your family, for God's love, strength, and mercy.

Allena said...

Praying for peace for all y'all. No words will ever express what my heart feels today, but you and Craig have shown such strength and Jordan is SUCH a little warrior. Y'all are an amazing family.

patty said...

My sister-in-law, Tracy Anderson, sent me the link to your blog. I wanted you to know that our family is praying for you and your precious little one.

Patty Leigh

Kelly Depcik said...

Kristen I have been praying for Jordan, you, Craig and your entire family daily. Words can't even begin to describe how I feel. No matter what I type, it seems inadequate and I just don't think it appropriately captures how I feel. Hearts are extremely heavy at ESI especially those within the Labor Division. We are all here for you - you have our continued love and support. Kristen, not only has Jordan been inspiring but YOU ARE AN INSPIRATION AS A MOTHER AND CRAIG IS AS A FATHER. You all remain in my daily thoughts and prayers. God Bless. xoxo

Anonymous said...

Kristen, I am so sad to read this posting of your precious little angel. She is such a doll...I have been keeping up with her through your blog.
I wanted you to know that I am thinking of all of you at this difficult time...please tell your Mom and Dad also that I am thinking of them as well...I adore my Grandchildren and I know they do too.
Just enjoy the time you have with her...you and your husband are wonderful parents...that is easy to see.
Love and prayers, Patti Kohl

Donna said...

I'm just another complete stranger writing to let you know that I've been praying for your family throughout the year. I cannot imagine the strength it has taken to endure what you've experienced. I continue to pray for healing for Jordan, and peace for all of you.

Marilyn Gordon said...

Kristen, all your friends at ESI have been following Jordan's courageous fight and are so sad to hear this news. Our thoughts and prayers are with you, Craig, Jordan and your entire family at this difficult time.
Marilyn

Donna Ludwinski said...

Dearest Plauschinats, my heart is breaking with yours...the pain is so impossible to fathom. I have prayed so much for your precious Jordan, and now with such a terrible heavy heart...please know how much you are loved from strangers from afar....

Anonymous said...

Myself and the members of St. John Lutheran Church in Thorndale are sending you our heartfelt prayers as we have been following your story through the Schwarz family here. May God give you strength for each day you have with Jordan.
God's peace, Brenda Westerman Johnson

Anonymous said...

Kristen, I've been praying for your little Jordan, as have many others, because of prayer requests sent by your co-worker Ron. My son battled bone cancer years ago, so I had a glimpse into the scary, painful, yet loving, world in which you, Craig and Jordan have lived during her illness. The prayers of many wonderful people kept me moving ahead each day. I encourage you to continue to cling to each other and the Love with which God is surrounding you and your little Jordan.
Rebecca Bremberg

Liz said...

My heart is aching for you all now. I will fast and pray for Jordan along with others as well. Additionally, I would like to give Jordan the greatest gift and prayer I can - to have a priesthood holder from my church come to give her a special prayer blessing. I could arrange it. I have had such blessings myself and have greatly benefited; others have received true miracles by them. Please, please let me know. I have a love for your family and I offer your family support in any way I can. I know you will continue, as you have been, to savor every precious moment you have with Jordan – a little girl who is divine beyond measure.

Homa said...

Our prayers will continue to be with the family. We are extremely sad and cannot imagine what you both are going through but continue to have faith in God. If there is any help that I can provide please let me know. Prayers, strength and best wishes to the family.