Wednesday, September 29, 2010

One More Day Left to Vote!

The next 24 hours could mean the difference in getting turbo 3F8 for neuroblastoma into the MSKCC clinic in a year versus who knows when. Jordan and many other NB children would greatly benefit from this treatment. Arms Wide Open Cancer Foundation is running neck and neck with the current 3rd place group, USAction Education Fund, which has organized to get 16 non-profits to come together to create a machine that is trying to take all the money in every category in the Pepsi Refresh contest.

Please take one least day to vote...feel free to pass on to others who may be able to vote as well!

There are 3 ways to vote in the final 24 hours:
1. Vote via text: dial 73774 and then enter 102653 in the body of the text
2. Vote via internet: (Make sure you click on "Vote for this idea" after you hear the Pepsi can opening and that the vote counter in the lower left goes from 10 to 9 meaning you cast your vote for Arms Wide Open). Plus you can vote with all your e-mails, personal and work.
3. Vote via Facebook : when you are online look for how to download the Facebook app, then vote on Facebook with your app

A win would be a great way to end September which is National Childhood Cancer Awareness Month!

Wednesday, September 22, 2010

Vote, Vote, Vote!

Today in the MSKCC clinic I briefly met Dena Sherwood, the woman who runs the Arms Wide Open Childhood Cancer Foundation. It was inspiring to meet someone who has been in the same battle as us and still found the energy to raise money (a lot!) for all the neuroblastoma warriors. Dena shared that Arms Wide Open has already raised $100,000 this year for MSKCC and that they are hoping to win the Pepsi Refresh Challenge in order to bring the annual total to $350,000. The Pepsi grant would be used by MSKCC for the turbo 3F8 research project. Turbo 3F8 is a super strong version of the antibody therapy Jordan attempted this past spring. Antibody therapy is a crucial treatment option for neuroblastoma and does not have the long-term side effects that come with so many of the other therapies. Dena shared that turbo 3F8 has already been developed...MSKCC just needs $600,000 to move it on to production. Production takes six months and then turbo 3F8 will be available to children in the clinic. This was wonderful to hear...but also a little sad. It is heartbreaking to know that the science is there but that money is preventing this treatment from being available.

Arms Wide Open is currently in second plase in the Pepsi refresh challenge. The top two vote recipients win a $250,000 grant so they need to maintain their current ranking until voting ends at the end of the month. You can vote for Arms Wide Open each day by texting 73774 and entering the code 102653. You can also visit the website below and vote online.


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?!?!

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.