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Update as of January 5, 2004Update as of January 30, 2001
Update as of September 8, 2000
Update as of July 2, 2000
Update as of June 10, 2000
Update as of May 10, 2000
Update as of March 30, 2000
Update as of March 12, 2000
Update as of February 23, 2000
Update as of January 3, 2000
Update as of December 10, 1999
Update as of November 30, 1999
Update as of November 15, 1999
Update as of November 2, 1999
Update as of November 1, 1999
Update as of October 26, 1999
Update as of October 18, 1999
Update as of October 10, 1999
Update as of September 29, 1999
Update as of September 27, 1999
Update as of September 24, 1999
Our grand-daughter Arielle has been diagnosed with cancer - specifically Neuroblastoma (Stage 4). We would like to ask all who view this page to keep her in your prayers, for prayer changes things. As of today, we have been told she has about a 40% chance of beating this and we are hoping that all of you bringing her before the throne of God will increase those odds. If anything changes, we will keep you all apprised here. For the full story, keep reading.
In late August, Arielle was diagnosed with a bladder infection. Antibiotics were prescribed and she did not seem to respond. On Thursday, September 2, Arielle went into the hospital for tests and what we thought was treatment for the bladder infection. That day she had a x-rays taken and a CT scan. Late that night we were told that Arielle had a large tumor and several possibilities were explained to us. We were told that based on what type of tumor they thought this was, she had a 70% to 80% chance of survival. Over the next few days, many more tests were administered (MRI, bone marrow tests, bone scans, etc...). On the following Wednesday (September 8), she was operated on to remove as much of the tumor as possible and to install a control IV (semi-permanent) line.
The surgeon told us that the tumor was indeed massive, affecting her liver, pancreas, stomache, aorta, vena cava, one of her kidneys and one of her adrenal glands. He explained that the tumor had grown so large so quickly that it had outgrown it's blood supply and had died in and of itself. He removed all the necrotic tissue and the affected kidney and adrenal gland. They also told us that other tests showed the cancer had spread to her clavicle and foot (bones). At this point, we were told that she had a 10% to 30% chance of survival.
During the next week, the biopsy came back with the definitive diagnosis of neuroblastoma. This type of cancer only strikes about 500 kids annually. More tests were done on her and we were told that the cancer was not in her bones and she was in stage 3 with about a 50% to 60% chance of survival.
On Wednesday, September 15, Arielle began the first of seven doses of chemotherapy. By Thursday, she was reacting to the treatment, getting nauseous and developing diareah. They kept her fed and hydrated through the IV lines. On late Friday, we found out that the cancer did indeed spread to one other region (a small amount in one of her knees) making this a stage 4 neuroblastoma. This caused them do downgrade her chances to about 40%.
As of today (Saturday, September 18), she has finished the first round of chemotherapy and is doing ok with solid foods (we got her to eat two chicken nuggets and part of a chocolate bar). She is also doing ok with Pringles potato chips (her favorites are the sour cream and onion). Arielle is a fighter and I can't see her letting anything, including this, beat her! I am writing this for many reasons - as a therapy for me, to ask for prayers for her, and as a warning to others. This came upon her quickly and silently. Those of you who are reading this who are parents need to do something, anything that can warn you before your children are affected with anything like this.
In years past, I have not been totally vigilant in making sure my kids got the absolute best medical care - including fully comprehensive annual physicals including all sorts of blood work and other tests. This is going to change. There are tests that can be done on all kids to look for early warning signs that there could be larger problems lurking. I would urge all parents everywhere to insist on getting these tests done annually. Sure, your insurance carrier may complain and you might even have to eat the cost yourself, but it is money well spent if you can discover something in it's early stages rather that in it's later ones.
I will keep this page updated as frequently as I can, and thank you all in advance for all your prayers for our little gift from God, Arielle.
Update on September 24, 1999
Arielle has completed her first round of chemotherapy. She complains of her legs and hip hurting her (bone pains as a result of the chemo). Her nausea has stopped and she is starting to hold down solid foods (in small quantities), however, just about everything she eats is giving her very strong gas pains, so she continues to eat very little and has dropped to about 30 pounds. If anyone has any suggestions on this, please email me with them. Thank God there has not been any hair loss yet (she is very concious about her looks for a four year old) - I get to keep my hair for another few weeks (I'll be shaving my head when she needs to, to help her with it). She is weakened from the hospital stay but is still very determined not to give in to this. My wife, kids and I will be babysitting her tonight - We're looking forward to it.
For some bad news - as of today both Arielle's mother (my daughter) Meredith and her fiancee Rick are unemployed. Meredith had just earned her bachelors degree and had just started a job with Fox (about a week before all this started). Because of all the time required to be with Arielle (hospital and home care), the job cannot be kept for her indefinately (no fault to Fox on this, they have been very supportive). Rick had also started a new job recently, and was taking off a good deal of time to be there for Meredith and Arielle. Although the job was temporary, he had been offered full time employment just as this whole tragedy started. Yesterday, he was told not to come back to work because of all the time he had taken off.
If anyone on Staten Island knows of some temporary work for Meredith (BS in Communications - she will do anything though) or for Rick (he is awaiting getting called for the NY City Fire Department - but he is trained as an accountant and can work on computers as well), please contact us by sending email to Bruce (me).
Also, Meredith did not want Arielle to go back to their apartment. She (Meredith) feels that environmental factors in the apartment contributed to, if not caused the cancer in the first place. The apartment has some problems with the bathroom plumbing that has caused a black mold to grow behind the tiles. There actually is some evidence that this does cause certain types of cancers. As a result, if anyone knows of a good, clean (and relatively cheap - up to about $850 a month) two bedroom apartment on Staten Island that could be had quickly (immediately would be nice), please let me know. In the interim, they will be staying with Rick's grandparents.
Update on September 27, 1999
Arielle was re-admitted to the hospital last Friday night. She started to run a fever (which eventually broke at 103). Her white cell counts were down to under 100 (normal is 1000-1200), along with her platelets and other blood components. Friday evening she was given a transfusion of whole blood and additional platelets. She was also placed on a regimen of antibiotics (three different ones) and sometime during the night her fever started to come down.
The good news is that as of this morning, Arielle's grandma Sue was watching her in hospital and Arielle started doing summersaults on her bed (quite a trick seeing as she is hooked up to two seperate IV lines!). She is feeling much better and can hopefully leave the hospital once more sometime this week.
Update on September 29, 1999
Some good news for a change - Arielle is getting out of the hospital today. Her white cell counts came up (500 as of last night) and her fever is gone. Last night she seemed to be in much better spirits than she has recently (smiled and laughed a bunch! - see photo below). More good news is that Meredith was able to keep her job at Fox (at least for now). Who knows, maybe things will get better all around (we could all use it).
Arielle is still feeling the effects from the chemo - diarrhea (making her butt very sore!) and her hair started to fall out in clumps. Please continue to keep our little angel in prayer as she continues her long road to recovery.
Update on October 10, 1999
Arielle felt well enough to go to her friend James' birthday party yesterday. She is supposed to go back into the hospital this week for her second round of chemotherapy, but there are several things in the works right now, so I'll let you all know as soon as I know what will be happening. In the meantime, look at the photo of Arielle in the birthday party dress (and matching hat) grandma made for her - isn't she absolutely adoreable (yes, I'm partial but she really is!).
Also some other good news. Meredith found a nice apartment near the hospital for a very good rent. A special thanks to Kathleen Lucadamo, the editors and publishers of the Staten Island Advance for their help in our finding this.
Update on October 18, 1999
A lot has happened in the last week. Arielle has completed her second round of chemo and was doing ok until this weekend. On Saturday she developed a fever (from a common cold) and was re-admitted to get antibiotics and fever reducers in her, as well as to keep a close eye on her. She doesn't like staying in the hospital and wants to go home very badly!
On Tuesday, 10/12, Meredith, Larry (Arielle's Godfather) and me (her grandfather) went to have a consultation with Dr. Brian Kushner of Memorial Sloan-Kettering Cancer Center. He spent almost 4 hours with us and after going through Arielle's charts, x-rays, CT scans, MIBG scans, MRI's and lots of other stuff explained that he felt Arielle could be helped at MSKCC. Above all else, he felt that her chances for survival could be raised from about 40% to about 60%. In and of itself, this was reason enough to transfer Arielle here, but he also explained that MSKCC is making strides in what he called Minimal Residual Disease, on in other words, having the neuroblastoma come back after curing it. They also are using a different protocol (five cycles instead of seven) of chemotherapy (apparantly, this reduces the risk of Arielle developing a secondary leukemia as a result of chemo).
All considered, it was an easy choice. These doctors have devoted their lives to curing the specific form of cancer that Arielle has (neuroblastoma). The team they have there is considered to be the finest in the world in dealing with this rare form of cancer (Doctors Cheung, Kushner and Kramer). Dr. Kushner has dedicated the last 12 years of his life to the cure of neuroblastoma and won't be happy until they can cure 100% of all cases! They have developed many new aspects to the treatment of this disease (immunotherapy with monoclonal antibodies, reduced applications of chemotherapy, oral VP16, cisretinoic acid (Actuane), etc...) and we are all hopeful that this will be a step in the right direction on Arielle's long road to recovery.
It's not over by a long shot and we would all appreciate your keeping Arielle in your prayers. After she gets transferred, I'll let you all know what is happening.
Update on October 26, 1999
Well a lot has transpired in the last few days. Arielle came out of the hospital and then went right back in again due to low cell counts and a fever of 102. Sue and a bunch of other family members & friends went over to Meredith & Arielle's old apartment and packed just about everything up. They are supposed to move in to the new apartment this weekend (Halloween).
Today (Tuesday, 10/26) Arielle got out of the hospital and travelled with Mom, Ricky (Meredith's fiancee), grandma and grandpa up to Memorial Sloan-Kettering Cancer Center in Manhattan to have Arielle meet with Dr. Kushner and start her treatments there. Arielle was upset at first, but Dr. Kushner had her won over very quickly and we finally finished everything up just in time to drive home during rush hour (yuch!) with Arielle while Meredith & Rick got to go see the Yankees game (a much needed and deserved break for them).
Arielle is scheduled for many tests over the next few days and we are optimistic about her future being treated in what is called the finest neuroblastoma hospital on the planet! Please remember to keep her in your prayers as the weeks, months and years of her treatement unfold.
Update on November 1, 1999
Wonderful News! Arielle went through a battery of tests last week at Sloan Kettering and the results are in. According to her lastest bone marrow tests and MIBG scans, her cancer is localized to her tumor and has NOT spread to her marrow or other areas of her body or has been cleaned out by the first two rounds of chemotherapy. We are overwhelmed with joy at this news!
Arielle is supposed to begin her third round of chemo tomorrow as an out-patient at MSKCC. Grandma will be taking Merry and Arielle up there early in the morning, so please remember to keep her in your prayers. God is working a major miracle here and I truly believe He will see Arielle through this trying time.
Update on November 2, 1999
More good news! Meredith was told last night that the tumor was reacting to the chemotherapy and was shrinking. At this point the doctors feel that the tumor is totally resectable (able to be removed in it's entirety). Arielle is beginning her third round of chemotherapy today and as of a few minutes ago (just spoke to her on the phone) was in wonderful spirits! Let's keep on praying that the good news keeps on coming.
The family has moved into the new apartment (thanks to all who have helped in this) and there are boxes everywhere. It'll be some time before they can get everything into it's place. Arielle loves her new room and has already shown Grandma where she wants the TV/VCR we promised her for Christmas.
Update on November 15, 1999
Arielle will be going into the hospital to have the remainder of her tumor removed with the week of Thanksgiving or the week following. I'll let you all know when we have an exact date.
In the meantime, let me relate a wonderful story. This past weekend, Arielle and Meredith paid a visit to Miss Rosemary's Dancing School (where Arielle attended last year). The school had taken up a collection, along with St. Christopher's School, and presented the check to Merry on Saturday. Arielle had asked if she could participate and dance with her class (she came dressed in her dancing clothes and shoes). She spent the entire hour with her class just having the kind of fun only little girls in dance class can. Meredith spent the entire hour with tears in her eyes as she watched Arielle having the only normalcy in our little girl's life that has been available since this nightmare started. I will be updating the Arielle's Angels to reflect all those who have given (give me some time please) but to hear that Arielle had so much fun was a boost not only to Arielle, but to all her family as well. A special thank you goes out to Miss Rosemary's and St. Christopher's for all they have done.
Also, coming up on December 12, the Ancient Order of Hiberians will be hosting a fund-raiser for Arielle. This group, through Bill Reilly, has been working tirelessly to organize this event and the we (the family) would like to thank them for all their efforts. I will put more information about this here in a couple of days.
Update on November 30, 1999
What a whirlwind the past two days have been. It all started on Monday, 11/29/99 when Arielle, Meredith, Grandma (Sue) & Grandpa (Bruce) went up to Memorial Sloan-Kettering to meet Dr. Laquaglia and do some pre-operative prep. It was a tough day, starting when we picked Merry & Arielle up at 6:00 AM to make sure we were up at the hospital on time. After some preliminary stuff, we met with Dr. Laquaglia (what a wonderful human being) and found out Arielle was scheduled for surgery for the next day! We were told all the risks associated with the upcoming surgery (Dr. Laquaglia didn't pull any punches) and told us that the surgery was very serious and would take "As long as was needed". In fact he told us that the longer the better because if he came down after only a couple of hours, it would mean that he couldn't do anything else for her and if it took a large amount of time, it would mean he was making good headway. He explained that he would be attempting to remove all the remaining tumor and how the incision would probably be made, as well as what types of tubes would be attached to Arielle (breathing tube, chest drain, catheter, etc...). He also explained that Arielle would be kept sedated for about 12 hours after surgery to help with the healing process. We also spoke to the anesthesiologist about the type of sedation that would be used (she was going under with a drug similar to sodium pentathol - can't remember the name) as well as letting us know she would also be getting an epidural to help with the pain.
We also spoke with Dr. Kushner (Arielle's new favorite person) and he informed us that he would be performing a bone marrow harvest right before the tumor resection. After some more tests & treatments, we finally got out of the center in time to drive home during New York City's wonderful rush hour (took about 2 hours).
Today (11/30) we all met up at MSKCC at 6:30 AM for prep. Arielle got weighed and her temperature taken and we had to wait until about 8:30 when they took her down to the operating suites. At about 9:30, Arielle was put under and mom carried her to the operating room (actually right to the door, where they wheeled her the rest of the way). We then went to the waiting area for the longest wait of our lives. At about 12:15 they informed us that the marrow harvest was very successful, and Dr. Laquaglia would be starting soon. At about 2:30 we were called to the desk and told that the doctor wanted to speak to us. Needless to say, after what we had been told yesterday, our hearts were in our mouths and we feared the worst! Dr. Laquaglia told us he was able to remove all the tumor "he could see or feel" and he was getting ready to close. Thank God! After Arielle was brought to recovery (about 4:30) we spoke to the doctor where he explained that after he was able to get her spleen out of the way, the tumor came away very easily, and he was able to get it all out. He also told us that it seemed to be dead tissue! When we thanked him, he told us that it was God that was due the thanks - what an amazing man!
As Arielle recuperates over the next few days, I will try to keep adding to this page. Thank you one and all for praying for Arielle, it's quite apparent that many were by the results.
Update on December 10, 1999
Arielle has started her fourth round of chemotherapy. Her spirits are high and she is recovering well from her surgery. Before the surgery, Meredith took Arielle for her Christmas photos. They came out gorgeous! You can view them by clicking here. This weekend is another fund raiser for Arielle, this one run by the Ancient Order of Hiberians. We are hoping that Arielle will be up to making an appearance. Just a lot of stuff going on lately, I'll let everyone know how everything is going next week.
Update on January 3, 2000
Arielle has started her fifth round of chemotherapy. This should be the last normal round - followed by her bone marrow transfusion, monoclonal antibody immunotherapy and radiation therapy. If all goes well, she should be declared in remission by Spring. Thanks to all of you who have kept her in your hearts and prayers. This will be brief, but I have included a photo of Arielle showing what she did to her head on New Year's Eve. Hope you enjoy it as much as she did! May the new year (century, millenium, whatever...) bring you all peace, joy, love, safety and health.
Update on February 23, 2000
Arielle has started her bone marrow transplant. On Monday, 2/21, she went into Sloane Kettering to start the chemo that will clear out her bone marrow. This is a six day drip. After this, the bone marrow that they harvested when she had the tumor removed will be reinfused (through the blood) and after this, we wait for her counts to come back up. Nowadays a very routine procedure but nonetheless a very scary and dangerous time.
Meredith has a very bad upper respiratory infection and cannot go near Arielle now. This is a real tough break for the both of them but they will both get through it! Arielle still has the radiation therapy and monoclonal antibody treatment in front of her, but THANK GOD it looks like she's well on her way out of the woods.
Update on March 12, 2000
Wonderful news! Arielle's counts have started to come up to good levels (her white cell count was a 1.0 yesterday). This means that her bone marrow has re-established itself and this phase of her treatment is almost over (Dr. says she should be ready to go home before the end of the month).
Next up for her is the monoclonal antibodies. This is where they give her mouse (yes mouse) antibodies and keep doing so monthly until her own immune system starts producing them on its' own. Apparantly, HAMA (human antibodies - mouse antibodies) attacks neuroblastoma cells and kills them before they can establish themselves to form a tumor. The treatments are painful, and they require about a four hour transfusion. They will try to keep her sedated through the process, but ususally the pain will keep her awake for some of it. Let's just pray that she starts producing HAMA very soon!
After the antibodies, they will give her radiation therapy (localized to the sight of the original tumor - in her abdomen) and after that, declare her in remission (thank God - Big Time!). Then begins the long five year wait to make sure she has beat this thing forever!
She's not totally out of the woods yet so please keep praying. I know that's what is making the difference here!
Update on March 30, 2000
ARIELLE CAME HOME LAST WEEK! What great news! She will have to wear a mask for the next three months but she is home! She has been visiting with us (grandma & grandpa) as well as with her uncle Seth (also being treated for cancer). She looks great and is just a bundle of love! Hair is even starting to grow back on her head!
She's not totally out of the woods yet - she still has the monoclonal antibodies to go through and the radiation, but there is a light at the end of that tunnel! We are looking forward to the fast approaching day that the doctors declare her in remission (then begins the long five year wait and all the scans but better to deal with those than the monster that was inside of her!).
Thanks to everyone for your prayers - Please keep them coming as they do soooooo much good. Update on May 10, 2000
Arielle has is completing her radiation treatments this week. She got a series of dots tattoo'd on her stomache so they can tell exactly where her radtion had been (now mom is worried she will have a hard time disuading Arielle from getting a tattoo when she's older).
She has also gone through one round of monoclonal antibodies. This treatment was very painful but thank God, Arielle does not remember the painful parts (drugs can be a wonderful thing). She will need to go through another round but hopefully, the HAMA will develop and that will be her last round of this.
After these treatments are done, Arielle will be in remission (what a wonderful word) and we just have to get through all the regularly scheduled tests for five years - not too hard considering where we've been with this.
Update on June 10, 2000
Arielle had her fifth birthday party today (miracles abound). For some photos (actually, lots of them - not for slow modems!) click here.
Update on July 2, 2000
Arielle spent the night with us last night (she is so much fun). She has just finished up the third round of monoclonal antibodies and is doing great. Her hair has started to come back very nicely and she is just a sack of sunshine! Thanks to all for keeping her in your thoughts & prayers these last few months - It has really helped! Just see below!
Update on September 8, 2000
It has been a couple of months since I updated Arielle's page and everything was going very smoothly... Until today. Grandma took Arielle in for the final day for this round of her antibodies and after the treatment Arielle's temperature started to climb very high (103). Her heart rate went up to about 170 and her skin got very mottled in appearance. Sue was told that Arielle was septic (same thing happened to Seth a few weeks ago). They decided to admit her (she's at Memorial Sloan Kettering) until her vitals came back down into the normal range. As we got in (about 10 minutes ago), daddy gave us a call and let us know that her symptoms had all but disappeared. What a scare! Arielle will be coming back to Staten Island tomorrow (hopefully) and will get to spend some time in the hospital with her Uncle Seth! Does it ever get easy?
Update on January 30, 2001
It has been a few months since I updated Arielle's page but much has happened since. To start, Arielle has finished all but the monoclonal antibody treatments. These will continue until she develops HAMA but for no longer than about another year. Arielle is doing wonderfully and behaving just like a typical spoiled five year old girl.
Another bit of news - Arielle is now a big sister! Today (1/30/01) at 6:10 PM, Arielle's new sister - Rebecca Sharon - came into the world at 7 pounds 9 ounces. I have put a few photo's below to show her off to everyone.
As Arielle's treatments wind down, I will be posting less often but will put any major news up here as fast as I can.
Update on January 5, 2004
It has been a very long time since I updated this site. That is because there has not been any bad news (Thank you God) to report. As of today, Arielle is a normal eight year old girl - Doing well physically and enjoying being a big sister. I will try to get some more current photo's of everyone up soon.
Thanks to all for their continued good wishes and prayers.
That's it for now - Thanks for caring and looking in!
