Wednesday, July 30, 2008
Today we move... The hospital is renovating sections of this floor so we will move to another section today. We are lucky in that the room we have been in is a little larger than most and it is nice for the longer stay. We are not sure what type of room we will be getting later today.
Well, it's over!!!
As I mentioned a couple of weeks ago, AOL is making it's final flight from VA to NY tomorrow. Over the years they have been so good to patients and their families while helping us get to NY for treatments. Corporate Angel is currently looking for another company to fill that void. Diane and I will now turn to Angel Wings. They fly little personal planes up there. From what I understand they are not for everyone though. The ride is much different on such a small plane. If possible Cody and I will be using them next month when we go up for his scans and bone marrow. Diane will be taking him up a week or so later to begin his 3f8 treatments. My guess is that she will try something else. She doesn't even like to fly on the big planes.
Stem cell rescue Friday...
Cody will be getting a stem cell rescue Friday. The doctors and nurses are all ready to go. They have had his stem cells frozen ever since his transplant years ago. This will help his system recover quicker and get his bone marrow back to where it should be.
The next step...
The 3f8 treatment that he will be getting is the antibody treatment that I have referred to before on my blog. It is made of mouse antibodies that are created to attack the neuroblastoma cells. There is a humanized form of these antibodies that they are developing but they are not ready yet. 3f8 has many advantages over chemo. The patients don't lose their hair, they don't get sick for days and it doesn't beat their body down like chemo. But,,,, 3f8 is very painful. So painful in fact that there are not many meds that can control the pain. Other parents from our BOP say that you feel helpless during that treatment. You want to help your child get through it but you can only be there to comfort them. On the bright side, the pain only lasts for 30 minutes or so and when it is done the kid has the rest of the day to do what they want. On the other hand, the kids must do it for 5 days and it must be done once a month. Although 3f8 has it's own set of challenges it is by far a better option than chemo. Here is a link that Dottie provided that explains 3f8 much better.
It use to bother me to ask for donations. Asking for money is just hard for me. I am proud that way I guess. But, when it comes to this I ask that you give what you can. If you know someone that usually gives to a charity please suggest that they give to BOP. You can point them to the link on my page. Help is needed!!!!!
Please keep praying for Cody and my family. My other two young ones are showing signs of stress. Justin is having stomach issues and Daniela is starting to act out in ways that are common the stress that is placed on siblings. It's a long hard road...
Monday, July 28, 2008
The next couple weeks are going to be very hard for Diane and I trying to find something for Justin to do. Daniela has her week lined up with cheerleader camp and with her friend Rachel in the afternoon. We really don't have anything for Justin to do the next few weeks. Diane is taking him to work with her today and I think the plan is to bring him in with her tonight. We are scrambling to find something for him to do.
Gas prices are not coming down fast enough for our liking. I drive an Expedition and Diane has an old Taurus wagon. With the next few weeks of driving into and out of DC on the schedule we are going to have many regular visits to the gas station. We would love to get a smaller car for commuting but with medical bills and gas it won't be happening anytime soon. We have wanted to get her a mini van for years but that is just not very high on our priority list right now.
School right around the corner. The kids will start school after Labor Day which is a month away. With Cody's treatments I'm sure the month of August is going to fly bye.. I pray that Cody will be able to get back into school relatively fast. We have not even broached that subject with the doctor yet.
Please pray that things keep going smooth this week for Cody....
Thanks for stopping in..
Sunday, July 27, 2008
I was able to get a run in this morning. I have to mow the lawn and get a hair cut today also before heading back in.
Thanks for stopping by!!!
Friday, July 25, 2008
Cody had his blood checked today. I was worse than Monday. So the plan is, we go in tomorrow to start chemo. He will have 4 days of chemo and then on Friday he will go to the PICU and get a stem cell rescue. It was my understanding that they couldn't do them because they were not certified. Well now my understanding is that they don't need that certification because it's not a transplant. I'm not sure what all the fuss is about. Cody had his stem cell transplant at Georgetown. So whatever.. We just want to get started.
At lunch today I dropped by my daughter Corie's house and met my grandson for the first time. He is so cute. He has an extremely long torso. I think he is going to be a big fella. Here are a couple of pictures. Mackenzie, me and Devin..
Thursday, July 24, 2008
Cody and I went to see the movie Hell Boy today. It was a pretty good movie and Cody seemed to really enjoy it. We are just going to be chilling for the rest of the day. Both of the dogs must have got into something last night. I cleaned up dog crap when I got up and again when we got home from the movie. I really don't need this extra stress....
I will let you all know if things get started tomorrow.
Monday, July 21, 2008
Just to show you how on the money this is, I drove into DC this afternoon only to have Diane call me right before I crossed the Key Bridge going into Georgetown. She said go home. Cody's blood is not ready to start yet. His platelets are too low. We have to take him back in on Friday to have it retested. You can't plan anything!
Sunday, July 20, 2008
Diane told me there was a small lighthouse very close to the camp so we decided to drive a little further south to see it. This was not the beach but for 30 minutes it was almost as good for Cody. I took some nice pictures and a couple movie clips while we were there. The movie is to the right on the blog. I hope you enjoy it and the pictures.
Cody will not be getting a stem cell rescue after this chemo. He would have to go to Duke because Georgetown is not certified to do that procedure. They feel he is on the edge of recovering on his own. Time will tell...
Piney Point Lighthouse in Md.
He could hardly wait.
The water was very warm. It was like bath water.
Stick with me kid and you can have a big beer belly too.
Friday, July 18, 2008
Several board members traveled to New York for a few hours Monday night for our semi-annual board meeting with Dr. Cheung. Dr. Kushner and Modak were also there.
The news is all good! While we are waiting for the manufacturing and testing phase of the HU/CH3f8 project to come to the clinic and in children he had several things to explain to us that are going to be starting in the next few months!!! Here is a "simple" summary of our meeting.
Dr. Cheung was very encouraged with the progress that has been made on the humanizing project. He had a general timeline on a power point slide. He told us a year ago that it would take 1-2 million dollars to get the antibody into testing phase and he is going to be right on target. He is testing not only the Humanized version, but the Chimeric version too. There are 4 humanized constructs and two chimeric he will test. The one that yields the best results is the one that will go into production. This antibody should be in the prototype phase in the next 8 weeks. Dr. Cheung should have a manufacturer picked out and the production, testing and manufacturing stage will then begin. This is the longest phase and he anticipates the drug to be in our children by the last quarter of 2010. This seems like a long way away but in the drug development business it is really pretty remarkable.
In the meeting Dr. Cheung kept emphasizing that we should not stop at the humanized 3f8. He wants target treatments so that our children, especially relapses, will have an arsenal of weapons to attack. It is BECAUSE of the BAND OF PARENTS and their efforts that he is able to move forward on new treatments that may have been much longer in coming. We need an arsenal and we're going to work hard to build the weapons!
All of his efforts are focused on approaching the disease with multiple options because EVERY child has different responses to different treatments. In that light he proceeded to explain several other things he would like the Band of Parents to consider.
1. The regular 3f8 dosage will be escalated 4 times the current dose for standard therapy with a target date of 6 months from now. It is a matter of having enough money secured to open the trial. This will be available for relapses who don't have hama and as the standard therapy. This new dosage allows higher levels of saturation of 3f8. So, in essence one round will be a powerful punch 4 times more potent that the current therapy.
The challenges is... it is a lot of antibody and needs a lot of ONGOING funding. Here are the numbers.
Now $500.000.00 covers 80 children for 3f8
With the high dose as the standard that number drops to 20 for the same money. They are looking for long term funding of this project.
The advantage of the high dose is that hama chances are reduced and the effectiveness appears to be increased. This will be available to relapse patients as well who are not hama positive. It will also be the frontline antibody therapy.
2. 3E7 antibody
Dr. Cheung was very excited to talk about this really promising therapy. It is an antibody that was explored twenty years ago at another research facility for other cancers, specifically ovarian cancer. The funding could never be completed but the clinical data was very encouraging and was found to be a good antibody for neuroblastoma. Dr. Cheung strongly believes there is a lot of promise in using this antibody in our "arsenal". Here are his reasons.
a. It enters the neuroblastoma cells and infiltrates instead of attach to NB like 3f8
b. Because it enters the cells agents can possibly be attached to it which can kill the cells.
inhibits proliferation of tumor cells
There were several other very technical things it does.. all good but complicated to explain!
The bottom line is that this is the first antibody besides 3f8 that has a completely different way of attacking the tumor cell.
Dr. Cheung had a timeline for this project and a projected cost.
He hopes to have it funded and in the clinic in trial by end of 2010
Funding needed 1.8 million
3. NKcell strategy with 3f8
This would be a relapse option and could be in trial very soon. We don't need to fund this, except for the ongoing 3f8 money. It has been used without 3f8 with leukemia with success so we are just piggy backing on their trial.
A donor would be used to harvest the NK cells on the machine that harvests stem cells. The cells would then be
implanted into the patient. The next week the high dose 3f8 would be administered.
Their belief is that the 3f8 after the NK cells are implanted would enhance and "fix" what 3f8 alone perhaps didn't do with relapse.
The high dose 3f8 and the NKcell with 3f8 could be starting in the next few months.
The HU/CH3f8 is projected to be in the clinic by the last quarter of 2010 if all continues to on target.
The 3E7 if funded would also be projected to be in the clinic by last quarter of 2010
Please keep in mind that all of these are timeline goals and actual dates can't be assessed.
Now... the VACCINE!
Band of Parents has nothing to do with the vaccine. We did ask about it though. It is sitting on the shelf packaged and ready... The internal review Committee at Sloan is meeting next week (July 22nd), and if everyone is comfortable, the protocol will be submitted to FDA. Upon submission, the FDA has 30 days to say "no" to the trial going forward if they have any concerns. So it looks like we are looking at vaccine to start some time in the next couple of months. The vaccine will be ready for relapsed patients who are in a second remission or a case by case scenario. The vaccine trial is a 6 month trial. You get 7 injections with lots of blood work in those 6 months. It is not an iv it is an injection. They are in the process of assembling a list of those patients they believe will most benefit from the vaccine.
So the bottom line is.... the Band of Parents has a great opportunity to move forward and continue to build the arsenal of weapons that Dr. Cheung believes will give many more kids many more options with low toxicity and lots of hope! We need to start a converation among our members as to how best to raise the next 3 million dollars in the next two years. We have pledged to the hospital to finish the last phase of the HU/ch3f8 project as soon as he has a signed contract with the company that will start the production of the project That pretty much uses up the money raised to date. If we help out with high dose 3f8 AND fund a large portion of 3E7 we need some huge donors and huge help!
We need to regroup and refocus and target our money to the next things that Dr. Cheung has on the table.... High Dose 3f8 and 3E7. Please comment and give us your thoughts on how to do build our options quickly!!!!
Thanks so much, Your board of directors
Thursday, July 17, 2008
The Senate of the United States works in strange and
wonderful ways. Late this
afternoon we were notified that Senator Jack Reed
planned to bring the Caroline
Pryce Walker Conquer Childhood Cancer Act to the
floor of the Senate to see if
it would pass by unanimous consent. I am so pleased
to let you know that there
were no objections.
The bill passed.
Tomorrow we will send out the official press release
but tonight I wanted to you
to know how grateful I am for the hard work you have
all done to make this
happen. This is historic and you should all be very
proud that you have had a
part in changing the world for children with cancer.
Here is the official press release.
CureSearch Praises Passage of Landmark
"Conquer Childhood Cancer Act"
by Unanimous Consent in the United States Senate
Children with Cancer and Their Families to Benefit from Legislation
The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.
"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."
Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.
"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.
"The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.
"On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer."
"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.
Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.
I will also be posting some great info later today. It is a long read but I'm posting it in hopes that someone out there can help.
Tuesday, July 15, 2008
Anyway, things have gotten progressively better since Friday. I put the pool up in the morning on Saturday. I started filling it before Cody got up. We have well water so it is pretty cold. Cody and his sister jumped in the pool when there was just a few inches of water in it and didn't get out until almost dark. We had our neighbors over for a few beers and the kids played in the pool. Cody seemed to be feeling better after the second day post operation. We had trouble getting the bandage off of his wound. It was saturated with blood and was suppose to come off Saturday. Diane was able to get it off before bed but it was bleeding just a bit and looked like it might be getting infected. So, I had to take him into clinic yesterday for the doctor to look at the site. They didn't have any luck getting blood from his hand with the needle. "Thank God for numbing cream." We put cream on his arm and waited for 20 minutes to try again. She got it on the first stick. We then had to remove a part of the old bandage so the doctor could look at it. It came off relatively well but I had to hold him down to do it. He called me many choice words that the nurse didn't expect to hear. She said she thought it did not look that bad and didn't think it was infected. Here is the down side, He can't go in the pool until it heals more. The kid just can't catch a break. I hope he can go in tomorrow or Thursday.
I think he will be starting inpatient chemo starting next week. Once again, he is just starting to feel better and we beat him down again. How can we expect him to think we are doing what is right for him when it always makes him feel so bad. I pray every day that a cure is found soon. These kids deserve better...
Here are some good pictures from today.
I came home from work and was getting ready to do 5 miles. Cody said he wanted to run also. So, here he is kicking my butt...
I hope this picture isn't too graphic for any of you. This is the tube that Cody had removed on Thursday. You can also see the scar from his liver surgery. This is the reality of a child living with cancer. I guess if this picture doesn't bring out some kind of feelings then you are stronger than most..
Now on a lighter side. These are a few of my nature pictures for the week.
Friday, July 11, 2008
When Diane came home yesterday she told me that there is going to be a change in plans for the summer. You know that Cody has been waiting for the beach trip which is suppose to be next month in Ocean City. Well we have been given his treatment schedule and it is not vacation friendly to say the least. In about 10 days he will be getting his HARD chemo to get him ready for the antibody treatment. Being that he is having a harder and harder time recovering from even the easier chemo he will have to be given some of his stem cells that are frozen from the last time they harvested them from him. His Dr. also said that he will stay in the hospital until he totally recovers from the chemo. This will probably be 2 weeks at least. We are then going to have to go up to NY to start his treatments up there. We will most assuredly miss the beach house week. The beach house was a special donation for cancer patients. I don't know what we are going to do. I guess we will try to not talk about it.
After I finish the wood tomorrow I'm going to set up the kids pool. It is a 2 1/2 foot by 12 foot pool. It will take a couple of days to warm up for sure but it should be ready for them next week sometime. As I said before, he can't seem to catch a break...
Thursday, July 10, 2008
Thank you for the prayers....
Wednesday, July 9, 2008
Tomorrow he gets his port. We have to be at the hospital by 7:30 am. That means we will leave the house around 6:15.
I'd like to thank my friend Matt from work. I also like to thank his mother who got this hat signed by a whole bunch of country stars in Nashville. Cody loves the hat.. Matt and Mom, thank you very much...
Tuesday, July 8, 2008
Today I am taking him in to get a CT scan and have his pre-op blood work for his port operation on Thursday. He has two more evenings of that anti-fungal which takes two hours. We will all be glad when that is over. I hope the port gives him a little joy in his life that he has been missing.
Please pray for Cody and that Diane and I find the strength to get through this....
Cody's CT scan came back clean. This means that he is on track for his port on Thursday. It will be a special day. So far so good, knock on wood...
Saturday, July 5, 2008
Just chillen and enjoying the rain.
Two goof balls...
This was a special time. Cody was trying to kiss Justin for the picture..
He got him.....
I'll try to take more this weekend.. Have a great holiday everyone...
Thursday, July 3, 2008
Wednesday, July 2, 2008
I received an email from one of my connections at BOP. His name is Larry and he is always in close contact with Dr. Cheung at MSK. Here is what Dr. Cheung said to Larry in a very recent email.
Even better news before the July 4th celebration. Our 3F8 supply is remedied and the "troop" is ready again.
Will be in touch.
What I hope this means is we will be getting a schedule on when Cody can start. One thing I do know is that after Cody recovers from this round of chemo he will have to get a higher dose of chemo right before he starts the anti-bodies. Diane and I both are starting to worry about how much chemo his little body has received. He is going in to clinic again tomorrow with Diane. His platelets were 37,000 yesterday which is very low and he may very well need to get an infusion.
Things are on still on track to get a port on Monday. We will have to take him in for pre-surgery blood work on Sunday.
Update: things are already changing. Due to Cody platelet level Dr. Abu-Gosh has pushed the port procedure to Thursday to try and get his platelets at a better level.
I would like to thank all our loyal readers. I know you come here to follow this difficult journey that Cody calls life. Diane and I really appreciate your prayers and well wishes.
God Bless all of you!