I wanted to post today about this sweet little girl that I don't personally know, but I know of her because her parents are apart of my N-BLAST support group for Neuroblastoma (NB).
She was diagnosed with stage IV NB on November 14th, 2003 when she was 16 months old. Stage IV is the worst diagnosis you can get with NB. She has relapsed and is going through experimental treatments which include oral and IV chemotherapy.
She is currently 4 years old and is trying her hardest to battle this horrible disease. Her parents, Catherine and John have posted emails about the status of their beautiful little girl and unfortunately she is not doing very well. I wanted to share her story with you all because she needs as many prayers as possible during this tough time.
Here is a link to her Caringbridge site where you can read the posts from her parents. It was just recently updated today. You can also read previous entries on the "read journal history" link at the top of the page. You can also leave comments on the guestbook page.
Penelope Jane London
It just breaks my heart to see another child suffering from NB. Especially since at Isabella's last appointment we were discussing NB with her oncologist and from one appointment to the next it seemed like he lost all hope in finding a cure for it. Or at least finding a treatment plan that will work on these kids. We asked him about getting little David checked out, just so we could be sure that there was nothing to worry about. But the doctor told us it would be pointless because even if he did, they wouldn't do anything about it. They have changed the protocol when a baby is diagnosed under the age of one. When a baby is under one year of age and is diagnosed with NB, they just take a wait and see approach. Which is fine, but the last time we had spoken to Isabella's doctor regarding NB, he seemed very upbeat and positive about making advances in treatment and diagnosis. He told us with NB it's not like breast cancer where the earlier you find it, the better off you'll be. With NB, it's all about the biology of the tumor. We got extremely lucky and Isabella's tumor had good biology; meaning the tumor would respond well to chemotherapy treatments.
The tests to determine if you have good biology are:
Tumor histology: Describes the appearance of the tumor cells under the microscope. A tumor is described as having either "favorable" or "unfavorable" histology depending on how active the cells look. Tumors with unfavorable histology tend to behave more aggressively.
****Isabella had favorable histology
Tumor MYCN status: MYCN is a gene that regulates tumor cell growth. Tumor cells can have a single copy or multiple copies of this gene (called MYCN amplification). Tumors with MYCN amplification tend to behave more aggressively.
*****Isabella had MYCN non-amplified
Tumor DNA index (also called ploidy): Describes the number of chromosomes in the tumor cells, compared to the number in normal cells. Sometimes a DNA index tells us that a child needs more chemotherapy, especially in infants.
*****I'm not sure how new this test is, but I don't remember them giving us the results on this.
There was another part of the diagnosis that I can't find the definition online, but it is called Shimada. You can have unfavorable or favorable Shimada and Isabella had favorable Shimada when her tumor was tested. So all of these good tests made it so her tumor would respond well to the treatment plan. We were VERY lucky.
Most kids are diagnosed with high-risk stage IV NB and they will have unfavorable Shimada and MYCN amplified. Once they get the high risk diagnosis, they go through much higher doses of chemo, radiation and stem cell transplants. What these kids go through and they are still able to put smiles on their face and run and play is amazing.
I would like to take this time to say that CANCER SUCKS! NB is a horrible beast and it is taking away too many kids from their parents. Parents who won't see their daughters get married or have their first prom date. Parents who won't have the joys of seeing their sons grow up to be young men. All of the firsts that these parents won't have is heart breaking and I only wish there was more that could be done with the fight against NB.
Please remember to stop by Penelope's site and say a prayer for this beautiful little girl.
1 comment:
My son was diagnosed with stage IV NB at the age of 14 months. We followed the UK infant protocol (6 chemos and a surgery) and have been clear of NB for the last 5 months. I believe that the LESS agressive the nature of the tumor is (non MYCN amplified, differentiating, etc.) the LESS it will respond to chemo. Chemotherapy is not only taking away our kids' strength to fight but also causes relapses. PLEASE, before you decide on which treatment to follow research, research and research. www.healingcancernaturally.com could offer alternative methods. Proper diet (no glucose, no cow milk, protein in fish, white meat, bean, nut or soya form), proper family atmosphere (our fears, disputes and stress take our childrens' strength away) and lots of positive energy are a great help in efforts to cure our dearest people. Research protocel, research german and chinese therapies, research yuri geller, research anything and everything that comes to you and keep believing!!!!!!!!
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