June 2006 Archives

HAPPY 4TH OF JULY

Well we started our Independace Day Weekend with a mad rush. Our town, Fairfield, always has their parade and fireworks the Friday before the 4th and this year we decided to be a part of the parade. Our good friends Bob, Beth and Charlene Putt were nice enough to let us use their pick-up truck then we decorated it with Nemo pictures and made signs
and then piled everyone up in the back of the truck and joined the parade. We had, Christina, Julie, Drew, Vincent, James, Veronica, Christoper, Mussy, Ronnie, and of course the Putt's. The kids, Mussy and Ronnie, walked along side of the truck and handed out candy to the kids while Jack, Roy and Bob sat inside the truck (in the air conditioning). We waved, said thank you and even got a few people wet with water guns. This was the first time in my life living in Fairfield that I actually was in the parade other then my dad being Grand Marshall a couple years ago.

Before the parade began we were greeted by Mayor Rocco Palmieri and his wife,
the whole town council and our Congressman Rodney Frelinghuysen.
What nice, caring people. We can't thank the Mayor enough for having Jack as one of the beneficiaries of the Mayor's Ball and we wanted to show our gratitude to him and the township for all their support. Everyone has been so generous and we just can't begin to show our appreciation.

So here's to you Mayor, Council and the whole town of Fairfield.
THANK YOU!

Is anyone wondering who Miss Kookadoo (Ms K) is? Well let me tell you, Ms K. is/was one of Jack's nurses. Which meant when she was on the schedule she had Jack as a patient if Denny wasn't on also. As far as Jack was concerned she and Denny were his favorites. As far as I was concerned well; I won't go there............... No really, Ms. K was the best. She was able to cheer Jack up, calm him down, make him laugh, she probably even made him cry once or twice. She played with Jack, she loved Jack, she CARED for Jack. She was a pain in the butt with making sure everything was done, she had boxes to check off. If she didn't have her boxes checked by the end of her shift she was off the hook. The following day I would cringe because she would come in like Atilla the Hun barking orders and practically pushing to get things done. "Come on Dad go in the shower", "come on Dad give Jack a bath", "come Dad do this , do that". Kinda made me feel like I had a second wife. Always telling me she could'nt wait till Mom came back to take over.
I could'nt wait until Denny came back.
This by no means is a slight on any of the other nurse and caregivers in BMT, I'm working on something for them.

We were told by "MIss Kookadoo" that we're being slackers and that just because we're home doesn't mean we shouldn't be blogging, so here it is, Tracey.................

Jack is doing very well. We went on Tuesday to Philly for his 2nd clinic day and everything is good. All his blood counts are looking great, except his platelets, so we're taking another ride to Philly on Friday. No big deal. Jack got so see his pals, Dr. Bunin, Tracey, Kim, Sherise and Derrick. Tammy, Tyler and the boys (Dominick and Nicholas) were in clinic too and we got to sit next to Mathew and Cathy Brand in Day Hospital, so the time went by quickly. We also got to see Ian and his mom Carol and he looks great and doing well since transplant. I have to say, we truely met a great bunch of families and are praying for everyone to have great recoveries from their transplants. We understand that the BMT floor is really quiet without us.

Anyway, on the home front, things are good......................Jack is driving me absolutely out of my mind, but I'm grateful that he is able to do it. He is so used to having me 24-7 that he's on top of me all day long. I get very little done around the house, but that's ok. He's enjoying eating. He doesn't eat enough to sustain his weight yet, but he is really doing a great job of taking bites of everything, and I mean everything. He love's his kosher dill pickles and wants to have what everyone else is having, so he always has a full plate.

Tomorrow I have a doctor's appointment early in the morning and then Christina has her 8 year old appointment with Dr. Levy and they can't wait to see Jack. We scheduled her appointment before lunch when all the patients have left the office to make it a safe environment for Jack.

FYI...They will be airing the show again later this month on the Discovery Health Channel, I'm not sure of the day, but if you go to the Discovery Health website it is listed.

Don't Forget to.....

It is so nice to be home, now it's getting everything in order and really being home is the next step. Today we are cleaning up (spring cleaning that wasn't done), outside of what the cleaning service did. We've been having some cable probelms so Roy is up in that attic doing some re-wiring, Christina is out at a waterpark with our neighbor and Jack is just loving running around the house.

Just a reminder, if you missed the "Mystery Diagnosis" show on the Discovery Health Channel it will be airing again tomorrow (June 18th - Father's Day) at 6:00 pm.

Thanks to the airing of this show we have been contacted by 2 families, one in search of a diagnosis for their son and the other whose child has already been diagnosed with NEMO. We are hoping that more families reach out to us so we can point them in Dr. Orange's direction, since he is one of the leading NEMO specialist. Right now we are a small few group of families who have a loved one affected with NEMO and we are sure there are more out there who have either been misdiagnosed or haven't been diagnosed yet. One day the "Found NEMO-Finding Cure" Foundation will be a place for us to all go to for support. We are still waiting on our 501c3 which will make the foundation totally tax exempt. I am finding that this is my calling in life to be able to meet other families affected with NEMO or Primary Immune Deficiency and make a difference to children with these life threatening conditions.

Thank you "Mystery Diagnosis" for giving us the opportunity to share our quest to finding Jack's NEMO. And, Thanks to the National Foundation for Ectodermal Dysplasia "NFED" for getting out that the show was airing, hopefully there will be more who are affected with ED with Primary Immune Deficiency who will see it and make a difference to them.

Please continue to keep praying, now not only pray for us, our friends we have met along the way in BMT but also the families affected and not yet diagnosed with NEMO. To date, we know of, our Jack, Andy, Jackson, Simon, Jacob, Cooper and Keith with ED-ID (Ectodermal Dysplasia with Immune Deficiency). There are more out there who we have not had contact with and even more that have not been diagnosed.

We got up early and went to clinic again and Jack got platelets and then we left. Nice and quick.....Then, we went back to the apartment for the last time. We packed up our stuff, loaded the cars and were on our way home, finally. After 3 months we "hit the road" and will now only go back for clinic days. We're praying that Jack starts to recover totally from the transplant with no "unexpected" hospital stays. It is so nice to be home.

Once home we unpacked the cars, hung out for a little while then took the kids for hotdogs at Falls View Texas Weiners and sat outside to eat and then went to "Rita's" for ice cream. What a nice night with the kids. The kids are off to bed and we are looking forward to getting some normalcy back in our lives.

Again, we can't thank you all enough for the knocks, crosses and prayers, that have been all answered and now we are praying for healing and thanks.

Please remember to keep our friends in your prayers as well, all those who we met on the BMT floor who also underwent transplants and are being healed from cancer. Our best to all of you and thank you for coming into our lives and touching our hearts.

Day +80 & Day +27 - Tuesday June 13, 2006

Today was Jack's first visit to clinic and what a wonderful day it was. It was so nice to see everyone "out patient". Jack got to see his friends face to face (actually, mask to mask) then through the glass in their patient room doors. He got to see Tyler and his mom, Tammy, Ronnie and his mama, Lula, Mathew and his mom Cathie, Hunter and his parents Nadine and John and of course his favorite girls from the BMT floor, Tracey (who he wouldn't stop kissing), Kim, Erin, Anne W., Renee, Bev, his "girlfriend" Sherise and most of all Dr. Bunin. He was so happy to see her. He was extremely happy to see Derrick who got soaked from a syringe full of water by Jack, thanks to Renee.

He did great getting his blood drawn and his counts were good. His platelets are a little low, but Dr. Bunin wants to wait until Thursday for him to get them. By now, Jack, should be holding his own platelets so Dr. Bunin wants to see how he does by Thursday so he didn't have to get stuck again for an IV. Otherwise, she is very happy with how he is doing and hoping that he continues to stay on that path.

Roy and I would really like to thank all of you who were able to watch "Mystery Diagnosis" last night. It was our first time seeing it as well and we were very happy with the show. We can't believe the amount of time it took to film that they were able to get the important things into that 18 minute clip. Now, lets hope someone saw the show who has a loved one who has similar symptoms and is searching for a diagnosis. Just think, it took having Jack and medicine today for my family to get a diagnosis for my brother (40 years ago) and my nephew (30 years ago).

We still have a long way to go since transplant and many restrictions that we will face for several months but it is all so worth it. We are looking forward to having some real family time once Christina is out of school (on 6/21), something that is so needed.

Thank you for your comments, thoughts, knock's, crosses and prayers.

(Tammy, Love your Bling, hope you don't mind me copying)

After a tough day keeping a secret from Christina that Jack was getting discharged, this was the look on her face when we surprised her at the apartment. I think she was surprised.

Yes, that means we were discharged today and hoping to not to be admitted again. Jack is doing much better since having the virus and we are so looking forward to really going home. We have clinic on Tuesday and depending on what the doctors say will decide on how long we will need to stay in the area. I'm hoping not very long. It's been a very long 3 months but all so worth it. We got some very good news yesterday......Jack is 100% donor now. So far the transplant has been successful. We are thankful for all the thoughts and prayers and we're praying that Jack continues to do well.

Roy and I have been blessed with 2 beautiful children as well as family and friends who have been knocking, crossing and praying, we can't thank you all enough.................GOD BLESS YOU ALL!!

Our thoughts and prayers go out to all those we left behind in CHOP, Danielle, Alyssa, Elijah, Malcolm, Andrei and those who have gone home, Tyler, Matthew, Ian, Griffin, Hunter and Ronnie (hopefully I haven't missed anyone) and of course the Caraker family who was blessed with the Bradley, who will always be remember.

Mark your calender and set your clocks for
Monday, June 12, 2006
Mystery Diagnosis on the Discovery Health Channel
10:00 pm Eastern Standard Time
(check your local listings for time and channel)

Click this link for more information and other viewing days and times http://health.discovery.com/tvlistings/episode.jsp?episode=17&cpi=112261&gid=14341&channel=DHC

This will be our first opportunity to get out NEMO awareness through our quest for getting Jack his diagnosis. It will be only about a 15 or 20 minute documentary, but hopefully one that will get NEMO out to the public. Tell your family and friends to watch!!!!

So here's the news, Jack has been diagnosed with having an "adeno virus". Now everyone carries some form of this virus in there body. Every once in a while it comes out lasts usually 24 - 48 hrs. and goes away. Now being immune suppressed and just having your immune system wiped out, Jack is holding on to this for a few more days then normal. This form of virus that Jack has, affected his gut. He has been having bloody diarrhea. Poor little guy. But he is the usual Jack, reeking havoc from his hospital room. He was moved back into his old room yesterday. Don't know if that's good or bad. So we are going to have to ride this one out until it passes. Please say a prayer, knock a piece of wood and cross your fingers that it passes quickly.
It does not look like Jack is going to get home for Christina's birthday. Please send her a birthday email bubbagirl98@aol.com she is very upset because that is really what she wanted was mommy and Jack home for her birthday. We are going to celebrate her birthday in Philly this weekend.
I feel really bad for her, she is such a good kid. She lives for her birthday, I think it's bigger then Christmas for her. So I think we are going to plan a party for her in July when things settle down and Jack gets home. Charlotte is really bummed, she feels so helpless that she can't do anything really special for her. So we will try and make the best of it.
In your prayers please include some of our friends we met on the transplant floor Tyler, Matthew, Hunter, Alyssa, Ronnie, Griffin, Danielle and all the rest of the children in BMT.

Last night Charlotte stayed with Jack, he was running a fever of approx. 103 degrees that Tylenol was doing very little to control. Only brought it down by about a degree or so. At one point it went up to 104 and change. Not good in Jack's world especially with his ED. Keep ice packs on his head to help cool him down, finally it started to come down to a more manageable number and as of this moment it is normal. His cultures so far have not grown anything bacterial. This is good and bad, we don't know what is causing the fevers. They are now doing cultures for viral type things. If this is viral infection there is nothing much they can do about it except to let it run it's course. So here we sit again waiting for results.

What a great night last night was, the only thing that was missing was Christina. I left her up North because she had her last softball game this morning which was obviously cancelled because of the weather. So, we got back to our apartment here in Philly at about 4:30 pm. Jack was like a kid in a candy store. He hasn't missed a beat since being in the hospital. He got into the apt. and started saying he was hungry and he wanted pickles (his favorite). He went from pickles to chips & dip to wanting noodles and then wanting to eat our steak. It was like he never left home. He crashed about 8:30 pm last night and basically slept like a rock.

Now, fast forward to 7:30 am. Jack is up bright eyed and bushy tailed and has a fever of 102 degrees. We call the the hospital and get the Oncologist on this weekend and she tells us to bring him to the Emergency Room. So needless to say from the ER we were admitted. Jack, the "Mayor of Munchkin Land" is back on the BMT floor but now in room 3C08. He was given tylenol and his fever went down, but he's going back up again. The plan now is to wait til the morning for the blood culture results and if it hasn't grown anything then they will discharge us, if not then the doctors will come up with a plan. This only a speedbump on the road to Jack's recovery, unfortunately it came less then 24 hrs. after being discharged.

Now on another note, June 12th is around the corner. What about June 12th you ask ? Click this link and find out http://health.discovery.com/tvlistings/episode.jsp?episode=17&cpi=112261&gid=14341&channel=DHC
This is the Mystery Diagnosis Show they did about Jack and getting to his diagnosis.

TODAY IS BREAK OUT DAY!!!!!!, AND THIS IS OUR SENDING OFF SONG!!!!!!
We will update shortly, going to our apartment in philly to have some family time.....Thank you everyone and keep the prayers coming.