Saturday, September 18, 2010

Another Update and Another Request

The results of Jordan's head MRI showed disease progression in lines with what the doctors expected to see considering the swollen eye issue. One of the doctors even thought there could be an infection component that was responsible for part of the swelling and MRI findings. Taking that into consideration, Jordan was hospitalized on Wednesday at MSKCC to start IV antibiotics. While inpatient, she continued with her course of medium-dose chemotherapy and started radiation.

Fortunately, Jordan's eye responded fairly quickly to either the chemotherapy or antibiotics and we could see 3/4 of her eye by Friday morning. Jordan was discharged Friday evening, making the two days in the hospital our shortest stay ever. This was fantastic news as being hospitalized in NYC is not as convenient as being hospitalized in Jordan gets rock-star treatment at Morristown and one can get used to such spoiling. :) A big thanks to Mom-Mom who navigated NJ and NYC public transportation to come into the city each day to help out at the hospital.

It seems like lately it has been difficult to string together more than one piece of positive news...right as we were being discharged from the hospital I found out Jordan's bone marrow test showed evidence of neuroblastoma. On Monday we were stunned to learn the bone marrow involvement was extensive. This was crushing as it means Jordan's cancer has progressed despite the multiple rounds of high-dose chemotherapy that she completed this summer.

There was some debate between our oncologist the radiation oncologist on the treatment plan going forward. For now, we are going to continue with the once daily radiation treatments but the radiation oncologist is increasing the length of therapy to ensure the skull bones are adequately treated. Radiation will continue until October 5 (is it really almost October?!?). Jordan is due for her next round on chemotherapy on September 27 and will continue with the medium-dose chemotherapy since she will still be in the process of completing radiation. For now, all treatments are at MSKCC.

So there is the update and here is the request....Pepsi is sponsoring a grant contest providing $250,000 to the top two vote recipients. Arms Wide Open is a group competing for Dr. Cheung's research lab at MSKCC. Dr. Cheung invented the 3F8 antibody treatment that Jordan underwent this spring. His lab is working to find ways to make the antibodies stronger as well as to bypass the resistance issue (which caused problems for Jordan). You can vote for Arms Wide Open by texting 73774 and entering the code 102653. You can also visit the website below and vote online. Voting runs through the end of September, and you can text and vote online one time each day. Arms Wide Open is in fourth place so they only need to move two more spots to win.


Jordan hanging out on the hospital bed...she's become very good at smiling for the camera!

Playing on her slide

Who's the cool kid?!?!


Anonymous said...

Neal and my thoughts and prayers are with you. Your whole family has shown incredible strength as you help Jordan fight this terrible disease.
Marilyn Gordon

Allena said...

I voted and added a request on my blog. Don't have tons of followers, but I figure every vote counts.

Anonymous said...

Please know that you all are on my mind and in my prayers. My stomach is in knots as I read the latest blogs - if there is ever anything you all need, please ask. God Bless you all.

Ron Preblick

Homa said...

My thoughts and prayers are with the family. Hopefully the treatments work and we have some good news! May God continue to give the familly strength to go through this phase

Liz said...

Jordan is a regular diva for the camera! I love it. She has a great smile and definitely looks cool in her sunglasses. It is great to see her strength. She's an inspiration. I truly believe she is one of God's most elect children and He is acutely aware of her.

I am fervently praying for Jordan and you and Craig.

If Jordan needs a bone marrow transfusion and you are looking for a match, please just say the word. It would be a way to help.

Thank you for posting the link to the voting for that grant. I will vote and email all my friends to do so too.

Paula said...

My thoughts and prayers are with you. The pictures are very cute and she has a great smile!! Glad to read that her eye is doing better. Hopefully the treatments will work and she will go into remission soon. Please let me know if I can help in anyway.

Paula Chakravarti