Thursday, November 19, 2009

Jordan...

Our family received some difficult news about Jordan this week. The doctors are still working to confirm the diagnosis, but it appears she has a form of cancer called neuroblastoma. We received the diagnosis on Wednesday after a bone marrow test showed suspicious cells and a subsequent ultrasound showed a tumor in her adrenal gland. We have been dealing with health issues with Jordan since late in the summer and were even hospitalized a week before Labor Day...we had discussed terrible diseases like leukemia and thalassemia with her physicians...but neuroblastoma had never even been mentioned so it was shocking and overwhelming to hear this scary word associated with our beautiful baby girl.

On Thursday, Jordan had another bone marrow biopsy and CT scan to help stage her disease. These tests confirmed the involvement of the bone marrow as well as revealed the cancer has spread to the bones in her face...possilby explaining the black eyes that have lingered. The spread to the bones makes her cancer stage 4...which sounds scary but I think it mostly just indicates the extent of spread, not necessarily the aggressiveness of the disease. The aggressiveness of the cancer will be identified on the tumor biopsy and we are definitely praying for a lower-risk pathology. What stage 4 does mean for Jordan is that she will definitely have to undergo chemotherapy in addition to surgery.

On Friday we have another bone scan planned, primarily to quantify the extent of the spread to the bone as well as provide a baseline against which to monitor her progress. There doesn't seem to be much else planned until the tumor removal surgery, which is tentatively scheduled for Monday. Fortunately, the surgeon has reviewed the scans and feels it is likely he will be able to remove the whole tumor on Monday, which would definitely be ideal. So until then we will be hanging out at Morristown Memorial and hopefully exploring the room of toys right across the hall.

I'm hoping to use this blog to provide regular updates on Jordan. We are very fortunate to have a wonderfully supportive group of family and friends (Craig's parents are up here and my mom flew in this morning)...if we don't respond to your emails or phone calls right away please know that your words of encouragement and support are so comforting and precious to us.

6 comments:

Michelle said...

Kristen...I don't know what to say, other than I am praying for you and your precious baby girl. I'm asking God for the best outcomes for surgery and treatment. Wow. I can't imagine how hard this is for you and your family. Please know that you will be in my thoughts and prayers constantly, and I wait with much hope to hear an update.

Beth said...

Kristen - There is nothing I can say to help the fear, grief and worry that I know you are experiencing. What I can say is that I love you dearly, and I am praying and will continue to do so. I wish I could ring your doorbell and hug you and take this hurt away from you. Know that you have a friend, an ear, a shoulder, or a whatever else you might need....anytime, all the time. I love you.

Mae Flower and Gene Bug said...

Kristen- I am so sorry to hear about Jordan. I wish I could help and be close to you. I will pray for baby Jordan and you and Craig. I am hear and if there is anything I can do, please do not hesitate to call. Love you...

kara said...

Kristen--so sorry to hear about Jordan. We will be thinking of you and your family and praying for you all.

Donna Caffey Schwarz said...

Kristen, my heart aches for you, Craig and baby Jordan. If only we as mommys could just make everything good and right with our children..... life would indeed be easier for us all. I love you.

kiss baby J for me!

Aunt Donna

Dezzy Lou Where Are You said...

Hi Kristen- my name is Desiree and we share many common friends. I wanted you to know you, your family and precious daughter are in my parayers. I started following your blog and will continue to send you guys positive thoughts, prayer and support from Pflugerville!