Recently in Jack Category
It is almost 2 weeeks ago that we laid to rest our baby, our angel, our hero, our friend, and our inspiration. Are we ready to talk yet? My answer would be it depends on the moment. The emotions change minute to minute, hour to hour. Don't quite know how to feel. Feel lost, feel relief from the pain and suffering, feel like I shouldn't feel either one of those feeelings. Anyway I'll/we'll get them under control and move forward.
For all those who were not able to attend Jack's funeral, it was a beautiful send off. Fire engines, police cars, police motorcycles, roads closed. It was an incredible display of love and emotion for the little man who touched this community and the lives of so many people in a way that is inexplainable.
On the day of Jack's funeral I read a eulogy that Charlotte and I wrote. I have had people ask for a copy of it so I figured I would post it for all to read. Just click on the following link Download file.
I would also like to say thank you to each and everyone of you, the support that everyone has shown, has us blown away.
Thanks Again Everybody
Here I go......Hi everyone, it's me, Charlotte. Its been a while since I last blogged for prayers and I can't thank everyone enough for always remembering in us.
Today is the first day that I am alone at home. Roy went back to work today and Christina went back to school on Monday, so here I am home with my mom. We have gotten so many emails and guestbook entries and eventually we will respond but I thought I'd start with a blog to let you know how thankful we are for all of you. You have all shown us increible amounts of support over the last 4 years and especially now. The last 2 days have been a little difficult and I'm sure I'll have a lot of those days. I have so much to do, our living area in my mom's house has been a dumping spot over the last couple of months with Jack being in and out of the hospital, I have med's that need to be thrown out, clothes to put away and toys to be boxed. Everywhere we turn, there is Jack and for the rest of our lives there will always be Jack.
As my very good friend said, "Jack has a legacy" which Roy and I are determined to continue to fulfill. Jack gave us all so much. The NEMO diagnosis and the knowledge alone will help more families with this condition and we will remain advocates and support systems to all of our NEMO families. We are a small group who live miles and miles apart but we have a closeness that makes us family. There is so much to do and we will do it. Since having Jack and going through his incredible journey, I have expressed that I have a calling in life and that calling is to help and give my knowledge and gain more knowledge to be able to support and help others. I know I have to go back to work, which I have wanted to do for a long time as long as Jack was better, and now he is better, no more pain, no more suffering, just peace. I'm actually tossing around schooling or something that can make me more beneficial to the cause. We'll see, right now our main focus is on Christina.
To all of our NEMO families,
Don't be afraid to call us, we are here for you. Any questions you need answered, we are here for you. Jack was cured from NEMO. Jack had a purpose and he endured and did more then any 1 adult may ever do in a lifetime. Jack was the strongest man we have ever known and he will give us the strenth to continue to help all of you, our NEMO families.
Thank you all again so much for everything.
God Bless
As most everyone has heard our beloved Jack was given his angels wings on Tuesday evening at 7:52pm. Jack passed from complications of pneumonia.
Yesterday, was the hardest and most difficult day of our lives. Charlotte, Christina and I laid Jack to rest. Jack fought a long and hard battle in his 4 1/2 years on this earth. He was the bravest, strongest man I knew. Jack was laid to rest with full firemen's honors. The show of support from family and friends was incrediblle. In his short time with us he touched the hearts of many. I have been receiving email and comments on this page from so many people far and wide. Jack had an effect worldwide. Dr. Jordan Orange spoke at Jack's funeral and vowed to continue to work for a cure with Jack's inspiration.
Here is the link to Jack's obituary that was posted in the Newark Star Ledger .You may also leave comments in the guestbook. You can also checkout Jack's Everlasting Memorial page . Just click on the movie banner. Please sign the guestbook and let us know you visited. We will follow up with another blog in the next day or so, the emotions are clouding my head.
Due to technical difficulties I was not able to blog yesterday, so Thanks to Andres Trevino for helping get to the bottom of the problem I am able to blog today for Jack's birthday that was yesterday September 4 (Labor Day!!). Thank you to Dr. Orange, Dr. Bunin, Dr. Brown, Dr. Aplence, Dr. Grupp(Grump), Dr. Teachy, all our nurses, the entire BMT staff and anyone I failed to mention, we were able to celebrate Jack's 4th Birthday! It has been a tough couple of months but we were able to be home.
Four years ago at 12:48am on September 4th Roy and I were blessed with this beautiful little boy, not knowing what he had in store for us. We already had a beautiful little girl and now a little boy would just complete the family (we also have Sadie our family beagle). Here Roy and I thought that we would just be the all around family, Mommy, Daddy, a girl, a boy and a dog, not expecting that our family would be in for this rollercoaster ride of emotions and heartache.
A friend once told me something that someone had told them "open your circle" and Jack has given us the opportunity to open our circle to meet some very wonderful people. He has opened our eyes to many different things. Trust those who should be trusted, Believe in things you should believe in and Live life from day to day and to enjoy it. We can't thank you all enough for the many knocks, crosses and prayers and letting us continue to ask for them.
Cherish your children and live life the best you can and just believe.............only YOU can make it happen. Thank you Christina and Jack.....We Love You Both
What a day we've had today. It started out with Denny waking up Jack at 3:30 am to show him a picture of a train that he colored and then added Jack's face to the front of it, making Jack a "Thomas the Tank Engine" train. So, need less to say, I'm very tired because that just started Jack up.
Then Jack received a HUGE package from Dr. Silas Ashmore's Office (All Creatures Great and Small Animal Hospital). The entire staff added things to the box that they though Jack would enjoy and they certainly hit a nail on the head. He got Thomas stuff, Batman stuff, Coloring Books, Reading Books, Stickers and what Jack loved mostly water pistols to shoot and Tracey and Denny.
Thank You So Much....Everyone at Dr. Ashmore's Office. I don't know if anyone patronizes Dr. Ashmore, but I would really like to say what a wonderful group of people that work for him. Dr. Ashmore is not only fantastic veterinarian, but a wonderful man who truely cares for his patients (animals) and their families, please consider using him for your 4 legged family member.
Then, another huge package came and inside was more things for Jack this time from AnneMarie Fusaro, Cathy Touma, Jenn Zampino, Miss Debbie and Miss Bernadette, from Tiny Treasures. The got Jack, chips, goldfish, animal crackers, a matching game, a computer game, a Thomas Card Game, Crayola fingerpaints, a puzzle and plastic zoo animals. Not only did they get that for Jack but they got me a beautiful bag filled with mommy things, body wash, candle, books, crossword and best of all CHOCOLATE. Again, what a wonderful group of women. AnnaMarie and Cathy are two parents who patronize Tiny Treasure and Jenn, Debbie and Bernadette are from Tiny Treasures. Jenn, Cathy, AnnaMarie and I had the pleasure of going out for dinner the weekend before Jack was admitted and what a great night we had and I am so looking forward to that again.
If anyone should ever need a great preschool for their child, consider Tiny Treasures, again, this is not only a place where you can send your child where you know they will be safe, but also a group of people who truely care about their families who patronize them.
We are truely blessed with the amount of people who surround us with all the love and prayers. Thank you All.
Finally, today we got some really great new from Dr. Bunnin. When we find out Jack's vntr's on wednesday or thursday we should know how much is the donors cells and how much is Jack's and the good news is that if it is more donor cells the donor who gave to Jack the first time around agreed to donate again, which would mean less of transplant and more of a boost to the cells he already has. If we should find out that it is more of Jack's cells the bad news would be that he would have to undergo another full blown transplant with major chemo again.
Keep knocking, crossing and praying for the donor's cells to prevail. Our prayers have been answered thus far, I'm sure they will continue to be answered.
Day +30 - April 26, 2006
Since Roy and Tina left on Sunday, I have been trying to keep Jack busy and be creative. So today I devised a way for Jack to go camping, he had so much fun playing under the tent and hiding from Denny.
Well, today is the day before we go to Philly. Tomorrow we're leaving at 9:00am. No turning back now. Charlotte is running around the house like a mad woman, thinking that we can't forget anything. We're only 100 miles away I keep telling her. I will be traveling back and forth every couple of days. But anyway, Jack, Tina and I all got haircuts. We figured that Jack is going to loose his hair from the Chemo so why not buzz his hair off so it's less of an issue. He looks great without his hair.
We have told Jack that he is going in the hospital to hopefully cure his NEMO. Charlotte and I are nervous in a positive way. Jack will come through this with flying colors. Please say a prayer and keep your fingers crossed for Jack. 
We haven't written anything about this yet and we now decided to let you all in. Some of you already know, but most of you don't. Back in November we were contacted by a company called True Entertainment in NY about having a documentary made on Jack's diagnosis. The show is called "Mystery Diagnosis" and it's aired on the Discovery Health Channel. Since then we've had several tapings for the show. In December we went to "Silver Cup Studio's" in NY for the initial interviews. We had a really long day, both Roy and I had 3 hour interviews as well as Christina having a short interview and our good friend Julie (bubbles) being interviewed. After that in February, we met them down in Philadelphia to have a taping done in "Day Medicine" where Jack recieves his IVIG's as well as taping with Dr. Orange. The next tapings were done last week here at home for the playtime with the kids as well as giving Jack his med's and our daily routine. And, finally, we finished up yesterday with Dr. Levy at St. Barnabas Hospital. We were told that the show should be aired on June 12. I will blog again when we get closer to the day and time the show will be aired. I give a lot of credit to actors, it's a lot of work. It can be grueling at times. We are very excited about the show to be able to get awareness about the NEMO diagnosis as well as tell everyone what we've gone through to get it. The show will not be long. They do 3 diagnosis for each "Mystery Diagnosis" hour, so for the many hours of taping it will be edited to about 15-18 minutes. Watch for the repeats they are showing now to get an idea of what it's all about.
Transplant Info
On another note, we are starting to prepare for Jack getting admitted on Tuesday March 14th. We spent the day in Philly on Tuesday for Jack to get his pre admitting tests and we will be going back on Monday the 13th to get a couple more tests done and if all is well we will proceed on Tuesday. Our nerves are starting to rise and we are starting to get sad about leaving Christina but she will probably be coming down on the weekends or Roy and I will be trading off. The low down of the transplant will be as follows:
Tuesday 3/14/06 Broviac Placement
Wednesday 3/15/06 Chemo
Thursday 3/16/06 Chemo
Friday 3/17/06 Chemo
Saturday 3/18/06 Chemo
Sunday 3/19/06 Rest
Monday 3/20/06 Chemo
Tuesday 3/21/06 Chemo
Wednesday 3/22/06 Chemo
Thursday 3/23/06 Chemo
Friday 3/24/06 Chemo
Saturday 3/25/06 Bone Marrow Transplant
Then we watch, wait and pray for engraphment to take place which could take up to 2 weeks for more.
Please keep us all in your prayers.
Roy and I will try our best to keep everyone updated through this blog. So make sure you check to see what is going on. Roy and I will be able to reached via cell phone or through our personal email address or you can email through the gmail address on this website. Thank you, once again, for your contast thoughts and prayers.
Well, we were discharged yesterday afternoon and happy to be home. Jack and Christina got into their routine right away, playing, screaming and fighting. (I guess everyone is feeling better!)
I really want to share wonderful email that I recieved today from my long time friend Robin.
Hey Charlotte,
How is Jack doing? I hope he's getting better really fast.
I wanted to share a nice story with you. One of the woman I work with, actually the advisor for the Kids For A Cause group that is going to do the fundraiser, just found out that she has breast cancer. She is going through all of the testing now to find out all of the details and her course of treatment. She came to talk to me yesterday because she wanted to tell me that your little Jack is her inspirtation and is helping her get through this difficult time. She tells herself when she just doesn't think that she can get through one more test or any more poking or prodding, that she is so lucky. She's had a good, healthy life so far, and the life she has now, is the only life Jack has ever known. And she tells herself that if he can go through it and still be happy then she can too.
So, Jack is important to us all. You are always in my thoughts and prayers.
Robin
Things like this really puts everything into perspective. There are so many people who are suffering from many different issues and outlook is what makes the difference. Please always remember to keep the wonderful people who have kept us in their thoughts and prayer as well as those who have medical issues and need healing in your prayers.
Robin, please give your friend our very best and she will be in our prayers. God Bless
Jack is back in the hospital again after Christina being such a loving sister and sharing her stomach virus. Christina was able to get over in less then 24 hours, but Jack on the other hand couldn't just ride it out. He started symptoms Friday night and by Saturday morning we were on our way to Philly. After getting a little fluid he started to perk up and will probably go home on Monday. Its been 10 months since our last hosiptal stay and I am very happy to say that this is a short one. This is one of the complications of having NEMO. Christina was able to ward off the virus quite quickly and keep herself hydrated, unfortunately Jack gets everything much more amplified and without the IV fluids he probably wouldn't have bounced back so quickly on top of making sure he stays hydrated so we don't have to worry about him having another stroke.
I guess the car show in here in Philly at the convention center, so they brought a couple of cars over (Rolls Royce, Mazeratti, Corvette, and a couple of others) along with Miss America - Jennifer Berry. Jack decided to play shy and didn't want his picture taken with her but we got a poster with pictures of the cars and an autograph from Miss America.
Also, please continue to keep Baby "Simon" in your prayers. With his parents consent I am able to post his name so you can remember to pray for him and his family. He will be undergoing a stem cell tranplant at the end of the month.
Jack has been going to school once a week at Stevenson School in Fairfield since October. He attends the handicap preschool and just loves it. Each Wednesday that he goes, I drive him and pick him up. This week Jack decided he wanted to take the bus home for the first time. He absolutely loved it. His bus driver is Miss Kim, who was also Christina's kindergarten bus driver. Hopefully this will be a trend.
