Liam Complaining of Leg Pain.....

The last two weeks have proven to be more of a challenge on the cookie front than we had bargained for and to add further stress things have not been as desired with our Prince. Liam completed his 5th round of 3f8's the week prior to Thanksgiving and then started Acutane the week of the holiday. He was very nauseous all of last week and was not able to keep much of anything down. We of course were concerned since he had not had any issue with Acutane during any of the past rounds and he did not seem to have any flu like symptoms. Anti-nausea medication had little impact and he chose not to eat for fear of throwing up. Liam lost 4 lbs. over the course of two weeks and this was troubling for us to say the least. This week his appetite suddenly returned and the nausea has all but disappeared even though he is still taking Acutane until the end of the week. Unfortunately the nausea has been replaced with something far more scary to any parent who has a child with neuroblastoma....leg pain and a slight limp. The fear this specific symptom strikes in you is all consuming. Liam would not climb the stairs today at school and his loving teacher had to carry him upstairs to the play area. We have been told some kids have severe bone pain while on Acutane so there is some potential reason for his pain other than the first thing that pops into a parent head who is in our situation. Liam just by chance had an appointment today at Memorial for a blood draw to see if he is still HAMMA negative so he can receive another round of 3f8 antibodies (6th round 7 weeks from now). His doctors have been alerted and will see him while he is there this afternoon. I am sharing this with you for the sole reason of sharing the fear of our unknown. Today is one many we will face not knowing if we are to be dragged back down into what can be described as nothing other than hell or if it is nothing to worry about and all due to Acutane. It is ironic this happens now while we are fighting harder than ever, along with the support of many of you, to find away to fight back against this terrible disease. I sit now waiting, worrying, trying to work but hanging on every phone call hoping it is Gretchen. I struggle to find the words to even post and though I have convinced myself it is nothing more than side affects due to Acutane, the fear is real and the feeling felt back in February when Liam was first diagnosed is again present. We of course will update when we know more. Liam is due for his 90 scans and bone marrow tests just prior to Christmas. I guess this is a reminder to continue to pray for him and to keep him in your thoughts. It is a reminder to Gretchen and I that though we have had a small taste of normalcy lately if you take out trying to sell 8,000 dozen cookies, we are always one limp or show of pain away from hell. We need a cure.

Cookies for Kids Cancer

The baking is ready to start in just a few days but we are nowhere near where we had hoped to be in terms of cookies sales. Maybe we were too optimistic as to how many the 80 plus parents and members of the Band of Parents foundation would be able to sell? Maybe it is just too much to expect parents of kids with cancer to find the time to sell cookies to raise money for a treatment that may make the difference in their childrens lives. Maybe it would be easier if such funding would be provided by our government like it is for adult cancers, but this is not our reality? If it was we the parents of kids with cancer could spend our extra time with our children instead of helping to develop better treatments. We need your support and the support of everyone you know to make this event a success. To raise the funds needed for the team of reseach scientists at Memoral Sloan-Kettering Cancer Center to begin to develop the humanized antibody and bring it quickly into trials. Hundreds of you visit Liams blog each day and today I ask that you help your Prince by buying some cookies and then asking 10 or more of your closest friends to do the same and so on. Thank you to those who have already ordered and shown your support for Gretchen and her selfless effort to make this event a reality in a matter of weeks for our son and the other children fighting with him.

http://www.cookiesforkidscancer.org/

Thanksgiving for us...

It was nice to be able to spend a few days at our home in New Jersey and to catch our breathe after the hectic weeks leading up to the holiday. Liam just finished his 5th round of 3f8 antibodies and Gretchen and I had been burning the candle at both ends readying the cookie event for the Band of Parents. Thanksgiving is the day when everyone is supposed to reflect on all of the things they are thankful for in their lives. Just as we sat down to dinner it became immediately apparent just how hard this very moment, of this very holiday, was going to be for Gretchen and I. The time when someone would normally say a prayer and thank god for each other, all we have, our health, and for friends and family. Today we just looked into each others eyes and no words needed to be spoken, no words could be spoken. I just looked at her and said...I know...I know...as tears began to stream down each of our cheeks. In an instant anything that needed to be said was said. We are thankful beyond words for how Liam has progressed since diagnosed in February. We are forever thankful for all of you who have cheered Liam on and been there for us for nearly a year now. We are thankful for the dedicated team of doctors and researchers who fight this beast each and everyday. We are thankful for Ella who brings us endless joy and if not for her adoring love this past year, it surely would have been much darker for Liam, Gretchen, and I. We are thankful to have each other to lean on during what is undoubtably one of the toughest tests of physical and mental strength a parent or couple can be forced to endure. We know our lives will never be the same and we will never be able to fully return to the way it was. We are not the same people. We will live with a constant fear of losing our son; of wondering will it come back? We have watched as other parents have lost a child, as lovely children with full heads of new hair, just settling back into the proper world of a being a kid, only to relapse and be brutally yanked back to the world of pain, medicines, hospitals, confusion, and fear. We are thankful for sure but I would not be honest if I did not tell you that we won't be satisfied nor will we rest until we are certain our son is safe and has beaten this unwelcome cancer. We will fight until all children fighting neuroblastoma have a better chance of winning than they do today. You can help. By clicking the following link now http://www.cookiesforkidscancer.org and buying our cookies as gifts this holiday season. We begin baking with an army of 200 volunteers this Saturday and we need your orders. All of you who have followed and been a part of this painful journey can help Liam right now by supporting our efforts to further the development of the next generation antibody treatment. Liam will reject the current mouse based antibody at some point in the future. Without a new humanized version, the treatment options available if he were to relapse as more than half do, are virtually non-existent. Your cookie purchase will directly impact the development of a new treatment at Memorial Sloan-Kettering Cancer Center and it could directly benefit your Brave Prince Liam if he were ever to need it. It is one thing to live with fear and yet another to give into it. Help us fight for Liam and his neuroblastoma brothers and sisters. http://www.cookiesforkidscancer.org/

or
http://www.bandofparents.org/

In Honor of Our Son Liam Witt

Dear Friends and Family,

As most all of you know we have been faced with the challenge of our lives this year as we fight to rid our son Liam of the cancer that has invaded his innocent little body. The reality of his type of cancer, neuroblastoma, leaves us with no guarantee as to his long term prognosis. The grim reality is that more than 50% of the children diagnosed with neuroblastoma relapse, and the survival rate for children diagnosed with high risk disease like Liam is in the neighborhood of 30%.

We, along with other parents facing this reality, find it unacceptable and have decided to act and do all we can to make a difference to improve these terrible odds. As a result the “Band of Parents Foundation” was created and our objective is to raise money to further the cutting edge research at Memorial Sloan-Kettering Cancer Center (MSKCC), the worldwide leader in treating neuroblastoma. As a founding board member and VP of Marketing for the Band, I am encouraged by the research and future potential of treatments currently under development at MSKCC. Gretchen and I feel we must do everything in our power to give Liam the best chance possible and if he were to relapse we want to be sure there are treatment options available that today don’t existent. I have watched as other board members have lost their children and I cannot begin to explain to you the feeling of helplessness and misery I feel each day wishing I could have done more. Motivated by this bleak reality, Gretchen and I have put together an ambitious plan to raise more than $200,000 for MSKCC research. It is the first major event on behalf of the Band of Parents Foundation and it is called “Cookies for Kids’ Cancer.”

We, along with a volunteer army, will bake and sell 8,000 dozen gourmet cookies (96,000 cookies in total) beginning November 16th and ending December 14th. The delicious recipes are from renowned cookbook author and dear friend, Sally Sampson’s recently released cookbook, Cookies. The cookies will be sold for $30 a dozen and all of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated.

I know that most of you are about to begin the tireless search for the perfect holiday gift for all those on your gift list and I thought this unique opportunity to give a gift that not only tastes good but feels good might appeal to some of you. See the attached PDF file for more details.

The cookies will go on sale beginning Friday, November 16th and can be purchased via the following website: http://www.cookiesforkidscancer.org/

You might also want to visit the “Band of Parents” website http://www.bandofparents.org/ to learn more about the foundation we are so passionately involved.

We hope you will pass the email to anyone and everyone you know to help us ensure Liam and all the other children fighting neuroblastoma receive the future treatment options they so desperately need.

Bound by Hope,

Larry & Gretchen Witt