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JAKE MILLER 
On the Beach in St. Thomas.
Jake has been battling neuroblastoma cancer since October 2001.
Jake underwent five rounds of high dose chemo followed by a six hour surgery to remove his primary tumor. He then was pronounced Ned (no evidence of disease) in March of 2002. He continued with two more rounds of chemo followed by a stem cell transplant where he remained in the transplant ward at Egelston Hospital in Atlanta, GA at Emory University for 32 days. Jake remained Ned for almost 15 months he then relapsed. He began low dose chemo at Scottish Rite in Atlanta, GA. Our Doctor in Atlanta recommended we go to Sloan Kettering in NYC. We went to NYC where they began him on high dose chemo to prepare his body for 3F8 antibodies treatment. We began in July of 2004, he was able to receive 5 complete rounds of 3F8 before he developed a resistance to the drug in the middle of his 6th round. He was pronounced Ned again after the first round of antibodies. Jake developed the HAMA in December of 2004. Jake had three month scans in March of 2005 where we learned the cancer had returned. Jake began low dose chemo after three rounds we rescanned and learned that the neuroblastoma had intensified. Jake then began one of the harshest rounds of chemo referred to as ICE. Our Doctor in NYC told us that he would only be able to tolerate one round. Remarkably Jake's body was able to withstand three rounds and the cancer was completely gone except for two small spots in one knee and one spot in the other knee. In the fall of 2005 Jake began low dose chemo again along with radiation in each leg in NYC. We spent 6 weeks in the Fall of 2005 in NYC, but it was worth it Jake was pronounced NED again in Jan of 2006. Jake continued four more rounds of lowdose chemo in Atlanta. In April of 2006 we began Accutane a drug taken by mouth. Jake has had a wonderful summer free of cancer and the pain of chemo treatments. Unfortunately at our latest scans in NYC in Sept 2006 Jake's cancer has returned yet again. They have discovered two spots one in each hip. Jake's battle has intensified yet again.
You can now order your Jake Hats at www.jakehats.com The money raised in the sell of these hats will go to help with the many expenses that occur in Jake's battle with cancer. Thank you for all of your support.
Please sign the guest book like all kids Jake loves to get mail (so does his parents).
I urge you, brothers, by our Lord Jesus Christ and by the love of the Spirit, to join me in my struggle by praying to God for me. Romans 15:30
Please check and see if your representative is sponsoring this bill. We have several moms going to Washington to speak on our behalf. Thank you to those moms and thank you for doing all the research on the facts below. Please help us and contact your state representatives.
The Conquer Childhood Cancer Act is due to be discussed in committee soon. If this bill is signed into law, it would mean 150 million towards pediatric cancer fuuding. It's especially important to contact our representatives NOW. When I last checked 139 representatives had signed on. You can check if your REPRESENTATIVE has signed on here:
http://thomas.loc.gov/cgi-bin/bdquery/z?d110:HR01553:@@@P
You can check to see if your SENATOR is a cosponsor here:
For more information about the Conquer Childhood Cancer Act, please visit http://www.curesearch.org. for "ready-to-send" e-mail letters to reps and senators. Old fashioned addresses are available too.
Here are some things to know about pediatric cancer and in particular neuroblastoma:
SOME FACTS ABOUT PEDIATRIC CANCER AND NEUROBLASTOMA:
Childhood cancer is the number one disease killer in children.
Neuroblastoma is the most common cancer in infancy.
Neuroblastoma is the most common extra cranial solid tumor cancer in
children.
Every 16 hours a child with neuroblastoma dies.
There is no known cure for neuroblastoma.
Nearly 70% of those children first diagnosed with neuroblastoma, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.
Childhood cancer is the leading cause of death by disease in the US and it
kills more children per year than cystic fibrosis, muscular dystrophy,
asthma and AIDS combined.
There are 15 children diagnosed with cancer for every one child diagnosed
with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for
research per victim of pediatric AIDS and only $20,000 for each victim of
childhood cancer.
If you do any Christmas Shopping online you can go to the website below (just click on the igive picture below) and register and a portion of your proceeds will go to The Band of Parents which will benefit Jake so very much. Lee has registered us and he said the list of retailers was great.
![[Click here to find out more]](http://i13.tinypic.com/7xv1hjc.jpg)
A fund has been estalished to help the family with the many medical and travel expenses that occur during Jake's battle. All donations can be sent to:
THE JAKE MILLER FUND
Covenant Bank & Trust
PO Box 570
Rock Springs, GA 30739
Journal
Thursday, October 2, 2008 3:21 PM CDT Okay, we have somewhat of a plan. In fighting cancer the fear of the unknown is always the scariest part to me. I like to know exactly where the problems are, and exactly what the Doctors want to do about it. I drive our poor doctors crazy sometimes. The plan is: Jake and Kim are going to NYC on October 19th and he will start high dose chemo cyclophos-topatecan-vincristine on Monday. He will get a full week and then they will stay over the next week and watch his counts drop. We have had problems in the past with counts dropping when we are at home and since we do not have an oncologist in Valdosta, and our onclolgist in Atlanta is no longer availible, we have had a lot of confussion as to what to do. It has been very frustrating for all of us and all of them. So, we will hang out and if a problem occurs, Dr. Kushner will be able to handle it on site.
After he recovers, we will go back to NYC in November and do another round of high dose. Then in December, maybe a NK Cell 3f8 program. But, as many of you know, you can not plan that far out in advance. For now, round 1 of high dose chemo is all we know for sure. It will change several times over the coming weeks. Please pray that Jake will have the stamina and the grit to endure the next few weeks without any major problems.
Lee
Read Journal History
Hospital Information: Ronald McDonald House/Jake Miller Rm 511
405 E 73rd St
New York , New York 10021
Links: http://www.loneliestroad.org neuroblastoma fundraiser
http://www.bandofparents.org neuroblastoma fundraising page
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