Tuesday, September 7, 2010

An Update and a Request

So here is an update of what has happened since Jordan relapsed...

We originally were told Jordan's relapse was isolated to a few spots on her skull that had been impacted at diagnosis. A bit later we found out there was bone marrow involvement as well. Jordan did two rounds of high-dose cyclophosphamide, topotecan, and vincristine in the hospital at Morristown...and had fever hospitalizations following each round (one lasting almost two weeks...brutal). Jordan handled the chemotherapy fairly well but started to experience some treatment side effects...blood in the urine and elevated kidney tests. These side effects seem to wax and wane a bit but are not a problem at the present.

The next set of scans at the end of July showed the bone marrow cleared but the skull spots were unchanged. Jordan moved on to a super-high-dose chemotherapy regimen of ifosfamide, carboplatin, and etoposide at Morristown. Again, Jordan had a subsequent hospitalization for fever but tolerated the chemotherapy fairly well with minor treatment side effects...low phosphorus levels so she is on an oral supplement.

Jordan started scans last week and the preliminary results showed the skull spots still unchanged. We will not get the bone marrow results until later this week and the MRI is scheduled for tomorrow. The plan for this week was to start a medium-dose chemotherapy regimen at MSKCC and make plans for radiation to the stubborn skull spots.

Craig and I were incredibly disappointed that all the chemotherapy had failed to treat the skull spots but were determined to enjoy the Labor Day weekend with Jordan and Craig's parents at the shore. And we did a very good job of enjoying and relaxing until Jordan woke up with a swollen eye yesterday. The swelling went down within a few hours of waking and did not seem to be bothering or impacting her so we decided to hold off on any ER visits.

This morning we were terrified when Jordan woke up with a completely swollen shut and puffy eye. We met with the doctors at MSKCC and the presumption is that the cancer is causing the swelling. Jordan's type of neuroblastoma is so aggressive that it is possible to have visible signs of progression even though the scans five days ago showed stable disease. They also said a small amount of growth in the skull can cause a large amount of inflammation.

Jordan started irinotecan and temozolamide chemotherapy today at MSKCC and will continue it through Saturday. The MRI is still on for tomorrow and were fortunate to get an appointment for the radiation planning session for tomorrow as well...this will allow Jordan to start the radiation treatments on Thursday. All of these treatments will be done on an outpatient basis...yea for no hospitalizations.

So here is my request...

Please pray for Jordan. I am praying that the MRI shows minimal progression and I am praying that the combination of radiation and chemotherapy will heal her cancer. I am praying for Jordan to have the strength to fight this disease and for Craig and I to support her the best we can. The radiation doctor feels the radiation has a strong likelihood of effectively treating the disease...which is encouraging because we really need this to work.

And a quick apology too...

I am sorry that I have not done a better job of updating the blog. Jordan is so fortunate to have people who care about her enough to read this blog and I should do a better job of keeping it current. This relapse has been difficult to handle and the thought of writing about it has been intimidating but we are going to try to do better.

And Jordan?

Despite everything she is doing wonderfully. She laughs and plays and dances and reads and is simply a joy to be around.

11 comments:

Marilyn Gordon said...

Kristen-everyone at work is thinking and praying for Jordan's recovery and strength for you and Craig as you support your daughter through this heartfelt time. No one wants to intrude yet please know we are there for you when needed: to run errands, cook a meal, want your dog. Anything to help manage routine things while you focus on the only important item-helping your lovely daughter battle this disease.

Homa said...

Will pray really hard for all to work out well. Best wishes to the family. Anything I can do to help out please let me know. Hugs and love to Jordan!

Homa said...

Will pray really hard for all to work out well. Best wishes to the family. Anything I can do to help out please let me know. Hugs and love to Jordan!

Allena said...

Praying SOOO hard.

Ken Wong said...

Our hearts and prayers are with Jordan for a full and complete recovery.

Aside from the excellent care Jordan's doctors are providing her, its your love that is the very best medicine she could ever receive.

You're all three so lucky to have each other.

Second_Season said...

My name is Jennifer Medina and I work for the Layla Grace Children's Cancer Research Foundation. We are spotlighting children's stories for Childhood Cancer Awareness month. If you you would be interested in answering a few questions and sharing Jordan's story, please email me at jennifer@laylagrace.org. You can visit www.laylagrace.org to read Layla's story. Or follow up on twitter @laylagrace.

OH said...

Beautiful and brave little girl... I wish you a miracle and a long and happy life... I wish you not to hurt anymore, I wish you strenght and all the best. Hang in there!

Luann Porter said...

Kristen,
I have been following your journey and will continue to pray for a full recovery. You are your husband are so strong and Jordan is obviously a fighter. Positive thoughts and prayers are constantly coming your way.
Luann

Laura's Mom said...

Craig and Kristen,
Thoughts and prayers coming your way!
from Mara Stiles, Sara Kessler and others here in Nervous System DRA at Novartis.

Anonymous said...

You are an amazing family. No apologies needed for being such wonderful parents. My family and I are praying for Jordan's renewed health and your faith and strength.Patty Sacco

millie Nadal said...

Dear Craig and Kristen,

I work here at Novartis in NSO. I want you to know that my prayers are including your little Jordan. I will pray hard and with faith that she will make it to a full recovery. Millie Nadal