Love and Miss you!

Mommy, Daddy and Tina

It was Friday morning March 16th 2007, New Jersey was getting a snow storm that had just started in the middle of the night and I woke up at 5:00 in the morning to Jack having labored breathing.  I knew something was wrong but hoped it was nothing.  By 7:00am I was taking Jack to St. Barnabas Medical Center.  Because of the storm, Christina had no school so she bravely came with me to the hospital and cared for Jack in the back seat while I was scared to death about him and driving in this snow storm.  Roy had gone to work early so I had to go by myself, which was nothing unusual.  But this time it was the scariest 25 minute ride to the hospital I had ever had.

Once at the hospital Jack was put on oxygen and of course, blood was drawn and extreme measures were taken to care for him.  It was then that I was told that he had fluid in is lungs and that St. Barnabas really felt he should be transported to CHOP.  Something happened, that I will never forget, Jack was lying on the bed with his eyes closed and it was only him and I in the room, Christina was sitting in the waiting area watching TV, the lights in the room were off and the room was only dimmly light by the lights in the hall.  It was then that Jack said to me, "Mommy, please shut off the lights, they are too bright".  I leaned over to him and said "honey, the lights aren't even on"  and it occured to me that Jack was having a white light experience and I said to him "Jack, you better stay away from that light, if someone is calling you, you tell them you not going!"  My heart just sank

It was more then 3 hours later that Ambulance transport got to the hopsital only to tell us that the storm was too bad to travel down to Philly by ambulance at risk of having to intubate Jack if necessary.  The transport team and the doctors at the hospital were feverishly trying to work out a way to get Jack to CHOP.  By this point all flights including all domestic, emergency medical helicopters and small medical jets were all grounded.  So we had no choice but to keep Jack at St. Barnabas for the night.  The ICU doctors came into the emergency room to evaluate Jack before moving him there but they were very apprehensive.  They were afraid to care for Jack....can you believe that?  Anyway, basically I told these "educated" doctors that all they have to do is keep Jack alive through the night so the emergency helicopter could pick him up in the morning and take him to Philly.  Not to mention that our pediatrician, Dr. Levy, had told the PICU doctors that they were admitting Jack to their floor whether they wanted to or not.  The problem was, that Jack was a very complicated case and the PICU doctors were unsure of themselves, but it wasn't about his prior extensive medical issues, it was about the pneumonia and nothing else.  So, finally Jack was moved to the PICU where one of his old nurses from when he was first born had treated him in the PICU, was there and was the nurse assigned to him.  Which was very comforting to me.  Jack and I slept as best as we could and I was just very happy that with all his complications that he made it through the night.  Actually he was better then the day before and I thought that he was just going to get better.......

I don't remember what time Roy came to the hospital that morning but right before he got there we had gotten the call from Philly that the helicopter was leaving and would be at St. Barnabas in approximately 30 mintues.  Well, of course, Roy being Roy, had to take the ride in the helicopter this time because I went the last time.  Which was fine with me.  So once the helicopter got to us and all the paperwork was completed, off Roy and Jack went...Jack's last helicoptor flight.........

The week following that first day March 16th was a week of ups and downs.  He only stayed in the ICU for 2 days and he was then moved back down to the transplant floor.  One day Jack seemed better, the next day he would get worse and it progressed that way all week.  Jack still kept up with his humor and always driving me nuts about what he was going to order next on his food tray, food that he never ate, but he had to have his tray.   He joked and played with his friends, Derrick, Linda, Denny, Tracey, Kim and more.  (We miss you guys so much!!!!) 

By Thursday, March 22, 2007, Roy came to relieve me at the hospital so I could go home and spend some time with Christina.  I got home late Thursday night and I tried my best to do everything I could before going back on Sunday.  Well, Sunday morning came along and I was feel really bad, I had nausea and dizziness and I just didn't feel right.  I called Roy and asked him if he would mind if I came down later just so I could feel better.  Well that didn't happen.  This nausea and dizziness lasted all day.  Jack was not feeling well and his breathing was not good and he didn't want to talk on the phone so I never got to talk to him before that evening when things changed for the worse and Jack was sent back up to the PICU at 4:00 in the morning and Jack was put on a respirator.  It was now Monday morning and I got Christina ready for school, sent her on her way and I was feeling better so I got in the car and went right down to CHOP.

When I got there Roy was waiting for me in the lobby of the hospital, he looked terrible.  He hadn't had any sleep from the move to the PICU and when I approached him I said, "its really bad, huh?" he just stool up and hugged me and said, "it's not good".  We both started crying and made our way up to Jack's room.  I remember walking into his room and seeing his lifeless body from the sedation that they had to give him to put him on the respirator, just laying on the bed and knowing that this was the beginning of the end.  Roy and I trying to stay optimistic but the doctors just were going in and out of the room and telling us that we may need to make a decision but they were going to run a couple of more tests before they would change him over to the aspirator machine.  This machine works differently then the respirator, and right now for the life of me, because I'm crying as I am writing this, I can't remember what the difference is.  During the last week of our up and downs with Jack, Dr. Orange was away at a conference and we were anxiously awaiting his return.  That evening Roy's dad drove all the way down from Albany, wanting to see Jack, knowing that a decision may be falling upon us.  (We were grateful to have him with us).  At one point I was in his room alone and I was standing over him just talking and whispering and he opened his eyes and looked at me.  I, of course, panicked and yelled to the nurse that he opened his eyes and she said, "does he look like he is in any pain" and I said, "no, he just looked at me and shut his eyes".  The nurse reassured me that if he is not in any pain then he just "opened his eyes".  Which at that point just made me feel that Jack just wanted to look at his mommy for the last time....I will cherish that moment forever.

It was Tuesday morning March 27 when we finally sat with Dr. Orange and we discussed our options trying to avoid the emminent end of Jack's journey.  I remember Roy, Dr. O and I standing our Jack's lifeless body with the sound of the aspirator machine in the background and Dr. O saying "this in not the 11th hour, yet".  With that he left Jack's room and went to talk to everyone on Jack's team.  My neice Candice had called me that morning and asked if it was alright for her to come and see Jack, I had told my family the night before that it wasn't looking good for Jack, so she wanted to make sure she and Zues (her husband) came to see him.  So, Roy and I decided that we would have Candice get Christina out of school and bring her and my mother down to the hospital.  During those 3 hours of waiting for Christina get to the hospital with my family.  We sat and talked to the doctors and each moment that went by, Jack was starting to fail...he was loosing kidney and liver functions, so we knew it wasn't long before we may loose him.  Dr. Orange was pulling everything out of the arsenal to do what he could to save our son and even though the doctor in the PICU said they don't do any fuetal attempts,  they really were. 

When my family finally arrived we sat them down and braced them for what they were about to see.  We explainned that things with Jack were not good.  My mom, Candice and Zues stood around his bed and talked to him and cried, meanwhile Christina did not want to go in and see her brother on all the machines.  The Childlife department of the hospital came to talk to her and they played with her and tried to reassure her that it was ok if she didn't want to see Jack right away.  It was getting closer to the time where the doctors were asking us to make some decisions when Roy and I finally decided it was time to do some explaining to Christina.  We found a small conference room and we sat Christina down with both of us on either side of her and I still don't know how Roy found the right words but we joked with her and then he said "Christina, Jack may not be coming home with us".  She started crying and said "it's not fair!"  We sat in that room for a couple more minutes trying to regroup and comfort each other.  It wasn't long after that that Childlife helped Christina to make it into Jack room.

Childlife was great, they helped her make a "Jack Box" which they were able to print pictures off our website and put in a couple of items that would always remind Christina of Jack.  They came into the room with one of those handprint in stone kits, which they mixed up and made a handprint of Jack's hand as well as they painted his hands, one in orange and the other in blue and put them on canvas for us to have forever.  It really lighten up a bad time.  During this time all Jack's friends from throughout the hospital had gotten word that Jack was not going to make it that he all came to see him.  Derrick came earlier during the day and just couldn't contain himself and left quite quickly and Linda came and sat with him and talked to him as well as all his other friends coming in and out to keep the air in the room upbeat.  Finally, Roy, Dr. Orange and myself gathered around Jack again and I said to Dr. O, "is it the 11th hour?" and he put his head down and just nodded.  There was nothing left to do, all attempts were made and Jack's kidneys were just not going to recover, we knew it was time.

Roy spoke with the doctors and told them of all the requests he wanted so that Jack would not suffer once the machine was shut off, so he would just go peacefully as well as making all the arrangement for his guys from the Funeral Home to come in and remove Jack right from his bed and take him with them.  (Being married to someone in the funeral business has its perks).  About an hour before Roy talking to these doctors he had already called his guys and we knew they were enroute to the hospital.

We gave the doctors the ok to start shuting down life support....Slowly they stopped the fluids going into Jack, the nurse was cleaning him up a bit and then gave us a few moments to gather around Jack before shutting of the machine.  I was lying over Jack, Roy was to the left and Christina was on his right.  Candice, Zues, my mom and Roys dad all had their hands on Jack's legs and Dr. Orange held onto his foot.  And at 7:52pm Jack passed peacefully with all of us around him.

Once he passed the nurses cleaned him up so Roy and I could hold him.  He weighed a ton from all the extra, extra fluid that Jack was holding onto in the soft tissue of his body and he had some blood coming out of his mouth and nose from the tubing.  None of that mattered, I was holding my son for the very last time.  I remember singing to him and telling him that he was with his Opa (my dad) and telling him how much I loved him, then Roy nudged me and said it's my turn.  I handed Jack off to Roy and that was it, I never held my son again.  Roy's guys from the Funeral home came in about 10 minutes later, (hows that for timing) and Roy handed Jack off to the guys, placing him on the stretcher which would take him back home to New Jersey.  So that's that, this is the untold story of Jack's final 11 days before death.  How coincidental that today is Palm Sunday which is the week that led to Jesus's death.  Jack was our savior, he served his purpose and then he left.  We miss him so much, but we know that he were blessed with such a special little boy that has changed our lives forever.

Thursday, March 27 is the actual year anniversary and we are planning to have a little service at the cemetary at 7:00 pm.  Some prayers, some memories and lighting of candles....just a memorial for the "little" boy who made a "big" difference in all our lives.

I don't know how to explain how we feel.  I, Charlotte, have been feeling a lot of anxiety over the last couple of weeks for the realization that Jack has been gone almost a year.  I am shedding more tears and feeling quite a bit of heartache.  There is still so much of Jack around that Roy keeps asking when are we going to start putting things away which makes me break into more tears. I know there is no rush to putting things away, but I have learned the means of "avoidance" and that is not good either.

So, to answer those questions:

At this point we are planning a graveside service on the 27th filled with prayers and memories,

And, honestly everyone has been so wonderful with remembering Jack on a daily basis that I can't imagine doing anything more then you have all already done.  I would love to make March 27 and September 4 national blue and orange day in remembrance of Jack, but I don't think I have that kind of pull, HOWEVER, I know Jack does.  So as usual, I am suggesting that everyone wear Orange and Blue in remembrance of Jack on those two days and please send us pictures, we love to see that!

There are many people who I run into that say they think of Jack always, most people tell me they say hello to Jack everytime they pass the cemetary and some people say they think of him in their own special way.  I am so grateful to have so many people to care about us as well as I am still amazed at how Jack "infected" so many people with his charm and personality.

We miss him so.........

Just on another note, please continue to keep the NEMO families in your thoughts and prayers.  Over the last several months there have been many ups and downs for them.  Unfortunately there is still so much that needs to be learned about NEMO and the affects of Stem Cell/Bone Marrow and Cord Blood transplants for the cure.  Also, please keep our good friends Alyssa Riccardi and Mathew Brand, two of Jack friends who went through transplant at the same time in your prayers.  Alyssa is having fluid issues and is still waiting for a kidney transplant and Matthew's cancer came back.  My heart is breaking in so many ways for all the NEMO families and our very good friends with other medical issues.

If you would like to remember Jack through Donation you are welcome to donate to the "Found NEMO-Finding Cure Foundation"  (PO Box 366, Pine Brook, NJ 07058).  We are accepting donations that we will divide between the NFED (National Foundation for Ectodermal Dysplasias  www.nfed.org) and the IDF (Immune Deficiency Foundation  http://www.primaryimmune.org) or feel free to donate in Jack's memory directly to these organizations.  Also, another way to remember Jack is to become a Bone Marrow Donor (http://marrow.org/) or for the pregnant ladies you can electively agree to donate the cord blood from your baby.  Cord Blood, in my opinion, has given the NEMO boys a much better recovery.   You could save the life of a NEMO child as well as someone who has Cancer.

I hope everyone had a very happy holiday season.  Ours was ok, different but ok.  Christina, of course was the focus and wouldn't you know it, Santa even got her the Wii.....That's all she cared about.  The day was quiet but I guess that was good.  It's just amazing how the holidays came and went this year.  I'm sort of glad they did....

On the home front, we have been keeping ourselves quite busy.  I finished up my first semester with an "A" in English and a "B+" in Math and to tell you the truth I was very upset with my math grade.  I thought I did much better on my final which would have ensured me the "A" and my attendance was great and I did all my homework and still the professor only gave me the B+, I was bummed....I guess I'm setting my expectations a little high, don't you think??  Anyway, classes started again on January 7th and I'm taking algebra, (yuk) and Anatomy/Physiology.  I'm pretty excited about the class but not looking forward to dissecting a rat next week.  I have never dissected anything in my life and even was absent the day my classes dissected a frog in 9th grade but I know I can't be absent in college....anyone have any good advice to get me through?????

Roy has me working like a dog on top of my studies, working my job at the shop and trying to keep Christina in line.  I know I haven't mentioned it, but Roy got me a job in the funeral home doing hair on the lovely old ladies who have passed away.  Ok, ok, don't get all grossed out, I'd rather be doing their hair then dissecting a rat.....Anyway, I really don't mind it.  I know I can't experience anything worse then having lost my son, so doing someone's hair for the very last time is quite an honor for me.  People always say, "they can't talk back" but my comment is, "no, but their families can" which as we all know can actually be worse.  "Fear the Living not the Dead".  So far no complaints on either end.  I really like it.

Other then that, we have just been moving along.  I will eventually post some new pictures.  Oh, another honor I encountered was giving Dr. Silas Ashmore (our vet) his haircut.  He has been growing his hair out for two years to be able to donate his hair to Locks of Love and I was privileged to do the task.  He donated his hair in the memory of Jack.  And, just yesterday I cut off Marissa Romano's (my friend Beth's daughter) hair and she is donating it to Locks of Love in the memory of Jack as well.  It's so wonderful.  I have those pictures and like I said I will eventually post them.  Thanks Silas and Marissa for wanting to preserve Jack's memory.

Well, that's it.  I don't know what else to write.  We miss our boy and wish everyday that he was here.  Thank you all for being so dedicated to our family.  Please send comments or guestbook entries.  We really miss that.

Lots of Love, Hugs and Kisses to All!!!! 

My Dear Jack,

I asked Daddy today what would you be?  A Pilgrim or an Indian?  Daddy said a Pilgrim because you were such a gentleman and I said Indian because you were a warrior.   Today we are giving thanks for having you and showing us what life is all about.  You gave us so much.  We miss you my little bug!!!!!!  Happy Thanksgiving my little Pilgrim or Indian! 

Love you,

Mommy

Things have been really good.  Christina is doing well so far in school but she still says she hates school.  She only likes socializing and playing on the playground........So much for my dainty little girl!!!

Anyway, here are some pictures I have wanted to post for Jack's birthday.    First picture is of Simon Guttierez and the second picture is of Alley and Matthew all of them wearing blue and orange to celebrate Jack's birthday.  The third is our good friends at the NFED celebrating with us.  After those are the pictures from the balloon launch on his birthday.

To Infinity and Beyond!...The balloon Roy and I sent up to Jack was of course, Buzz and Buzz flew the fastest.   As you can see in the picture the wind took the balloons straight for the tree and 6 balloons did get caught, but our boy wanted all his balloons that by the time we left the cemetary all the balloons were gone out of the tree.

Please continue to keep us all in your thoughts and prayers.  We're missing Jack so much and could always use the extra prayers to give us the strength.  As well as continuing to keep all the other NEMO families in your prayers.  They all really need it.  God Bless you all!!

We had a nice day yesterday celebrating Jack's birthday.  I will try to post pictures later.  I gotta get ready for school.....I'm pretty excited!!!!!

We can't believe your 5 years old today.  We hope you will like the balloons we're going to send up to you.  We miss you so much.  There are so many people celebrating your birthday with us and people are letting us know that they are wearing your favorite colors to help us celebrate.  We know you must be feeling so much better and we are happy that you can celebrate your birthday without a booboo belly.  No more pain, baby, just celebration!  Please stay over all the NEMO boys and help bring them to the "cure".  They need you!  We hope you, Opa, JP, Paulie, Mark, OmaOma, Val and all the our other family who are with you are helping you celebrate your birthday today.  Lots of big hugs and many kisses from us.

We love you Bug,

Love,

Mommy, Daddy and NaNa

We just came back from Paradise Island in the Bahamas.  What a beautiful trip.

This was the view from our balcony