Neuroblastoma is a term that refers to a growth or mass usually common to babies or young children. Some medical experts have said the maximum age is two years, while other experts claim that children up to five years of age can sometimes have the disease.
Medical experts from The Cancer Center at The Children’s Hospital of Philadelphia, The University of Chicago Comer Children’s Hospital, and other respected medical organizations are pouring a lot of time and energy into tackling this mysterious disease, while at the same time trying to compassionately help NB patients and their parents navigate through the world of oncology treatment and/or maintenance.
One other caring individual has taken up the cause to conduct ongoing awareness campaigns and fundraisers designed to raise monies to help further the research that's already being done to help youngsters win their battles against Neuroblastoma.
This person is 24-year old Anna O’Connor of Chicago, who unlike many other Neuroblastoma patients, was diagnosed with the disease in 2002 when she was 17 years old.
Anna’s story is a remarkable one, and well worth everyone becoming familiar with. One will see a timeline and chronicling of the temporary health & wellness setbacks Anna has had to deal with from time to time during the last seven years. But, despite the setbacks; Anna seems to have allowed her heart and love for youngsters to help develop a passionate and laser-focused ambition to raise as much money as she can to help with the fight against Neuroblastoma.
“Anna’s Hope” is the name of the foundation founded by Ms. O’Connor when she, during her own treatment phases, realized how insufficient the funding for Neuroblastoma research is compared with funds allocated to the research of other types of similar diseases.
It is "Anna's hope" that her organization will help increase the funding for Neuroblastoma research, allowing a larger number of NB survivors access to the appropriate medicines and treatments that have been working so effectively for Anna during the maintenance of the disease in her body.
Forging ahead and focusing beyond even recent health challenges, Anna and her dedicated team raised close to $28,000 recently during their Annapalooza 2009 Festival in West Chicago!
Discussion about increased funding for NB research and maintenance therapy heightens the level of optimism of one New York couple who received the news that their youngest of two daughters is battling against Neuroblastoma.
“There was a bump on the baby’s back pretty much since birth, that was diagnosed as hemangioma and treated by the hemangioma specialist. Then, by the time she was 16 months old we started to notice a significant increase in size of a new bump on the baby’s neck so we took her to the pediatrician to have this checked out. We were told by the pediatrician that the baby had a cold and an enlarged lymph node. Antibiotics were prescribed for the cold and we were given an appointment for a few weeks later. The bump was still there at the time of the next visit, and we received a stronger antibiotic medication to administer to the baby. All this time the actual mass was growing undetected,” shares the wife.
“Now, my wife had an appointment with her own doctor shortly after the baby’s visit to her pediatrician, and she brought up to her doctor the issue of the growth in the lymph node on the baby’s neck. Before my wife could even finish describing what the growth looked like, her doctor told her we would need to immediately have blood work and x-rays done on the baby. My wife’s doctor also asked if we knew of a blood specialist we could go to. Since the baby was already being treated by a hemangioma specialist, my wife told her doctor that we had someone to go to. Later, when my wife recounted the story to me, we both knew this didn’t sound very good at all,” added the husband.
The hemangioma specialist was scheduled to see the baby months later for a regular check-up, however, after receiving the emergency call from the wife, they were scheduled in for an appointment two days later. Both parents decided to take the baby to this doctor's visit.
“When the hemangioma specialist took a look at the baby she literally turned pale! She told us we had to take care of this immediately, and began rattling off things like biopsy, x-rays, surgery…at that point my husband and I went into shock. The trip back home was incoherent as we tried to process what was actually going on,” stated the wife.
The couple shared that what followed the news was the beginning of a journey filled with specialists, surgeries, hemangioma treatments, x-rays, needle aspirations, and a new pediatrician for the baby.
Blood work and x-rays that continued would later reveal Neuroblastoma as the problem.
The wife says that she could feel the news she was going to get one day couldn’t be good when she was ushered into a conference room filled with a doctor, social worker, oncologist, and several other people. One of the doctors said they would need to make a conference call to include the husband once all of the medical staff was in attendance. The wife shares that she recalls having a few moments to compose herself while waiting for some of the later-arriving medical professionals to enter the conference room; and states that her husband did not have a chance to brace himself for the news once the call had been put through.
“I had just gotten in from work one day sometime after the baby's growth removal surgery had taken place when the phone rang. It was my wife calling me from the hospital where she'd been admitted for a minor procedure of her own. When she told me doctors were in the room with her and we would all be doing a conference call I almost couldn’t take what I thought I might hear. Then it felt like a Mack truck loaded with heavy materials rolled right over my entire body. I was worried, confused, prayerful, angry, and drained all at once. Surgery for the baby? Our baby would need immediate surgery because the mass had become more enlarged and needed to be removed during a surgical procedure."
Observable improvement was noticed when the majority of the growth was successfully surgically removed after two operations. The couple was informed at that time that the surgical procedure should have been sufficient. They say that this made sense to them because according to all of the information they'd received up to that point the Neuroblastoma was in an entry-level stage and there was no emergency involvement at this point.
“Following the second surgery, we started noticing something we didn’t want to see on the baby’s neck. We think the different specialists must have also been getting together with each other and discussing the same concerns,” expresses the wife.
A needle aspiration was then administered to determine the current state of the mass. Based on the results from this procedure the specialists informed the couple that more aggressive treatment would be needed, which would include chemotherapy treatments. The couple sought the input and advice of three different oncology specialists before agreeing to the chemotherapy. All three specialists told the couple the chemotherapy treatments would be the most proactive steps for them to take for the baby at that point.
Surgery #3 was conducted to install a mediport, which is an intravenous device, into the baby’s chest.
The mediport installation would serve to enable constant access to the vein without having to repeatedly prick the baby's arm to try to find the vein. The couple felt that the minor discomfort caused by the mediport surgery – the temporary mediport is visible and can be felt - did not impede the baby’s ability to run and play like any other active two-year old.
Cycle I chemotherapy treatments and the first dosage of medicines have successfully concluded. The couple is now in the process of checking the baby's levels to make sure everything is working properly – and they and the doctors are delighted that everything is working! Cycle II treatments and accompanying meds will soon begin.
And all the while the baby continues to run and play, and simply does not believe that she is at all sick!
In addition, the husband shares that the baby's appetite is just as healthy now as it was before the chemotherapy treatments began. With unwavering optimism and hope, this couple has continued to reinforce the message of health & wellness to the baby, and to everyone they speak with. They, along with Anna O'Connor, believe that they are taking the best proactive steps to be completely healed and cured, and win the fight against the disease.
The couple has also found it critical for the baby, her 5-year old sister, and for the two of them; to maintain normalcy in their everyday routines at home during the chemotherapy treatment cycles.
Summer camp, school, light chores, following directions, time-outs, loving discipline, family meals and other quality time together are still the order of the day. The baby has developed a keen sense of knowing her body, and is aware of times when she needs to slow down to rest or get a glass of water or a snack.
Honesty and using appropriate medical terminology with their 5-year old has also been a big help to the couple. When their eldest daughter began asking another relative about the baby, the relative alerted the wife. Immediately, the wife said to the 5-year old, “I heard you’ve been asking questions about the baby. What do you want to know?”
Nagging the mind of the older sister was why the baby was going to the doctor so much and having to take medicine all the time.
The wife responded to the older daughter's question by saying, “Right now the baby has something called a mass. Some people call it cancer. So, she has to go to the doctor a lot to get her medicine, to get something called chemotherapy, to get check-ups and sometimes to get shots…”
Shots! That was the part that didn’t seem to register well with the older daughter, although she seemed to readily accept and fully understand everything else mentioned by her mother!
The shots, along with other aspects of the world of oncology, appear to have become routine and somewhat commonplace for the baby. A tiny little finger is stuck out when she now sees the finger prick heading her way. Her two-year old mind is not thinking as much about the finger prick as it is about the stickers she always gets during these visits! And, whenever the baby gets a prize from the medical staff for completing a task; she makes sure to get a prize to take home to her big sister, as well.
Astute, compassionate, and knowledgeable doctors and medical staffs are working hard to help the couple manage the Neuroblastoma. A recent visit to the cardiologist to monitor the baby’s heart rate during the preparation for Cycle II chemotherapy included the use of impressive modern technology. The husband explains that the equipment was similar to sonogram equipment, and displayed a clear and easy-to-understand picture of the baby's heart. The cardiologist was as excited as the parents to see that there was no fluid build-up around the heart, and the husband still remembers the doctor saying: “THIS IS A WONDERFUL PICTURE!”
According to the couple, additional sensitivity being shown by the medical staffs involves the descriptions they have used during the different phases of detection, diagnosis, and treatment. At no point since the initial diagnosis has any doctor or medical professional used the word “cancer.” The terms growth, mass, and the disease are used instead.
Because of the rareness of Neuroblastoma – a reported 600 to 800 diagnosed cases in the U.S. each year – the couple has not been able to find out about or link up with many others with the same Neuroblastoma experiences.
Anna O'Connor is continuing her mission to raise awareness about and funds to help further the research efforts being done to win the battle against the Neuroblastoma disease. The noble campaign started by one caring young woman from West Chicago will now hopefully be duplicated by other similar fundraising drives around the entire county.
This would certainly help couples like Ken & Tyla continue strengthening their fight against Neuroblastoma, as they work toward maintaining their baby's health and wellness...
IF THIS BLOG ARTICLE HAS INSPIRED YOU IN ANY WAY TO JOIN THE FIGHT AGAINST NEUROBLASTOMA, PLEASE POST A BLOG RIGHT BELOW TO LET US KNOW WHAT YOU WILL DO TO HELP...it really does take an entire village...
Visit Anna O'Connor's website at http://www.annabanana.org/, or e-mail her at anna.oconnors.hope@gmail.com.
Donations to “Anna’s Hope” can be made either directly on Anna’s website, or by sending your donation directly to:
Anna’s Hope
P.O. Box 362
Wheaton, IL 60187-0362
Sharon M. Biggs, M.A.
Educational Leader
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