April 2006 Archives

Charlotte came home on Friday for the weekend. So it was just the guys hanging out, and Jack wasn't his usual self. He really was not much fun because he wasn't feeling well. He had a fever and was just blah all day. Now fevers are serious S.ugar H.oney I.ced T.ea in the transplant world. Blood is taken, antibiotics are started and the national guard is called out (not really but it feels that way). They run cultures and all sorts of tests to see if anything grows. Once they find out what it is, they then adjust the medications to fit the bug. So here we are at 2:00 am Tylenol is not touching Jack's fever and they tell me we are going to have to bring it down the old fashioned way. Cold compresses, now picture Jack sleeping with one of those nice fleece cure4jack blankets snug as a bug. I woke Jack up and told him we where going to do this and he had a fit. So to get him to go along I had to put one on too. Our nurse Jenn told me it was very becoming. But changing compresses every 15 minutes for 2 hours till the next dose of Tylenol was the biggest drag. 4:00 am by the time I got to sleep. Needless to say I am dragging.
Jack's new cells are taking their sweet time, they are up and down, down and up. At this point they are saying Jack has a yeast infection and they will probably have to pull his broviac line out tomorrow. But we will wait to see.
I will definetely post an update tomorrow. But let me leave you with this picture. It was taken last week but it is amusing. . Jack likes a towel on his head after his bath because he hates having a wet head.

Good News is Jack is holding true to form and baffled another Doctor. Dr. Bunin says she retiring now, Jack has done her in. Great News is we got the results of the VNTR (what it stands for I don't know). But it the test that tells what percentage are Jack's cells and what percentage are the donor cells. Now if you remember the throw a Hail Mary Blog from 4/19/06, I said that the last VNTR was 1/3 donor cells & 2/3 Jack's cells.
I guess all of you have been saying your prayers, knocking on wood, and walking around with your fingers crossed because it's is working. I bet you can't wait for me to tell you the answer? I will, but you have to keep doing all of the above. We are able to see the clearing through the trees. But where not out of the woods yet.
95% DONOR CELLS 5% JACK'S CELLS YES YOU READ IT RIGHT 95% DONOR 5% JACK. YIPPEE, YAHOO, HOORAY. I was almost speechless when Charlotte told me. Thank the Lord above, and Thank you all for the prayers, the knocking and the crossing. Please keep it up. Lets pray for 100% and no set backs. Jack is like that old commercial "we will sell no wine before it's time". He must have himself confused or something. He has his own playbook and is going to call everyone of them before he's through.
So our next trick is to persuade Dr. Bunin to stay on for a little while longer. She has see Jack through till the end. I think if we can get Jack to smile at her and ask her nicely she might stay. We need to get to 100 cells on one slide and not require platlets for 2 or more days and then we might be able to get paroled to the halfway house (the apartment), then go for every other day for check ups. After that homeward bound
Way to go Jackie boy!!!!!! Keep it up

One other shout out Happy Birthday to Andres Trevino who is responsible for creating the website and the blog.
The Hagelin's wish you many more Happy & Healthy.

Keep praying , knocking & crossing; it's working.

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.

Day +28 - April 22, 2006
We're all Yankee fans here and we're used to exciting games that there is a tie in the bottom of the 9th and we're going into extra innings, as our good friend Jodi Rapa phrased it and that is how Jack's transplant is going. Out of no where on Friday, Jack decided to throw a curve ball and start producing cells. All weekend we've been watching the numbers and they have been climbing. What does this mean? First of all it means that Jack has now baffled another group of doctors and second he seems to be showing signs of engraphment. We're keeping the same pitcher but also keeping an eye out in the bull pen. As far as we know, Dr. Bunny Rabbit has activated the same donor and we are waiting to hear about that and she is still moving forward with another transplant. If Jack continues to show more signs of engraphment maybe, just maybe he won't need another transplant. Monday they will be running another VNTR which shows how many cells are actually his and how many are the donors, but those results take several days to get. So, in the mean time, continue to knock on wood, cross your fingers and pray. Our Jack loves to add excitement all the time to the situation and this is just another one of those times. We have been very hopefull and have kept our faith in this transplant and we continue to do so. Another one of my very good friends Sondra Paulson said she had a dream that Jack was "making more and more cells and said that maybe she had the gift of phrophecy", I pray that she does. (Love ya Sonj) GOD Bless us all.

Well, just when you thought it was safe to go back in the water and shark swims up and bites you in the a**.
That's how I feel today. Dr. Bunny Rabbit came in today as the bearer of bad news from the bone marrow biopsy they did the other day. 2/3's of the cells found in Jack's marrow where Jack's, 1/3 where the donors. This is not the positive we were looking for. What does this mean? Well this could mean one of two things or both who knows. Not enough donor cells were harvested for the transplant or believe it or not enough conditioning aka )(chemo therapy). Either way we are kind of back at square 1. The Dr.'s are activating a new donor and also trying to go back to the original donor to get more cells. The original donor would be the most favorable scenario but that is usually doubtful (keep your fingers crossed). This time they will go for stem cells because you get more cells and Jack needs a boat load. Jack never makes anything smooth & easy. He always causes chaos & mayhem but that's why we love him.

So, today Tina and I went on a double decker bus tour of Philadelphia. It was pretty neat. They take you to 23 points of interest all over the city. From City Hall to Independence Hall to Ben Franklin's house, the steps of the Art museum that where made famous in Rocky. Did you know Slyvester Stallone only ran up the last 10 steps, his stunt double did the rest. There is some really great architecture around the city and a ton of early american history. But anyway enough of the boring stuff. After the bus tour Tina and I went to see the Liberty Bell
Tina wouldn't cooperate for the camera. She was getting bored by this point, to much history for her. She and Charlotte are going to visit the zoo tomorrow. Oh yeah and by the way it is Charlottes Birthday so please send her a B-Day wish. She is feeling very depressed right now.
So everyone keep your fingers crossed, say a little prayer, and send a litttle luck Jack's way please.
I also want to say a BIG THANK YOU to all of you for reading, praying , crossing, knocking and whatever else you do. It does not go unnoticed. We really appreciate it and Jack especially does. We love you all.

Thanks for the prayers, I won't say Jack is officially engrafted yet, but we are seeing signs. Jack's cell counts are going up. And down which is expected.
Sundays cell #'s ANC 40, Total Cells 2 counted
Monday's Cell #'s ANC 17, Total Cells 6 counted
Tuesday's Cell #'s ANC 75, total Cells 4 counted
Dr. Bunin aka Dr. Bunny Rabbit says Jack is acting like a cord blood transplant at this point, but she is happy to see progress. From the bone marrow aspirate that they took yesterday they baby reds and baby whites (cells that is). They also sent a sample out to find out what percentage are the donors and what percentage are Jack's. The #'s jumps aren't quite as much as they would like, but it's something and that speaks volumes. As we have said before Jack always does things his way. They have taken Jack off medications that could possibly supress cell growth, such as all his mycobacterial infection drugs. Dr. Bunin also tried to tell Jack he couldn't play with his Thomas trains anymore because they could supress cell growth. She was only kidding him of course but he took offense anyway, and played the drama king. She likes to have fun with Jack and he likes to have fun with her. Dr. Bunin has also renamed Jack. He is known as Jack "T". Hagelin, the "T" stands for; you guessed it "TROUBLE". He won't give anyone a break. Always keeping them on there toes.
For the last 2 days Mommy & Christina have been out seeing the sights of Philadelphia. Going all over the place. They went to the Science Museum and took a ride over by the waterfront, they going to the zoo one day this week.
Jack and I hang out all day, he is in pretty good spirits. They have taken his moriphine pump away, because he has hardly used it or needed it. I will complete this later it is getting late.

HAPPY EASTER EVERYONE! It was a pleasant day considering spending it in the hospital. But we have some good news to report. Jack's blood counts have gone up. His ANC has gone from 0 up to 50 and he has had 2 cells counted. It doesn't sound like alot but it can mean a whole lot. Tomorrow, Jack is going have his bone marrow tested to make sure he has enough cells in there to get the job done.
Dr. Bunin aka (Dr. Bunny Rabbit as Jack calls her) is coming back on service tomorrow. This is a great thing since this week looks to be an important one as far as cells go. She is the Head Chef around here. So we will have to see what she has to say tomorrow.
So today, Charlotte and Christina came over after Charlotte cooked the ham (It was great underdone but great).
Don't tell her I said that. So anyway the Easter Bunny left a couple of baskets at the apartment for Jack & Christina.
Tina got shrinky dinks, floom , and some candy and Jack got ...... What else Thomas Trains along with some candy. The Easter Bunny also stopped by the hospital and left some activity books, stickers, some candy, crayons, markers, clay and a bunch of other things. He even hid eggs here at the hospital just for Christina & Jack to find. So we had an easter egg hunt at the hospital. This is Jack & Tina walking to the playroom where the Bunny hid the eggs.
All & all it was a good day. Please keep praying that more & more cells keep showing up. I'll let you all know how the bone marrow test went, keep your fingers crossed please.

I have to apologize for not updating in the last couple of days. There has really been nothing much to report. We are still looking and waiting for engraftment. Has anyone out there seen it or heard from it? We are starting to get a little nervous, edgy and down right uptight playing the waiting game. Today we had 1 cell, lets hope tomorrow we have a few more. If that be the case then we can say it is coming. At this point we are scheduled for Bone Marrow test on Monday Morning. This is where they go in and take a samp,le of Jack's marrow to see if there are any stem cells in there. If they are there then we just have to keep waiting for them to wake up and start producing other cells. If not then we have some what of a problem.
Here at C.H.O.P. they plan ahead for the problems. So what they have done is gone back to the drawing board and contacted the National Marrow Donor Program to activate another possible donor for that just in case. I have some really positive thoughts that Jack being Jack is just putting us through our paces and doing the "good things come to those who wait" . He has a habit of doing those things, alot of people around here have alot of good feelings that he will surprise us over the next couple of days. So onward and upward we go.
So yesterday (Friday) I came down with Christina and had a nice reunion with Mommy and Jack. She and Charlotte were so happy to see one another. As I was thrilled about seeing Jack, he perked up for Daddy in a big way. We went right back to where we left off when I left last week. He was needing a fresh face and new stimulation. I can easily sink to a 3 yr. old level as most of you might know. He is very good for me when I am here. He never gives me a problem.
Today Charlotte and Christina came over this morning, they brought a dozen and a half hard boiled eggs and the dye and we dyed Easter Eggs. This is the 3rd year in a row that we have spent Easter in the hospital . So hopefully the Easter bunny will bring some eggs, chocolate and engraftment. Wouldn't be ironic for Jack to engraft on Easter Sunday and all the signifigance of the holiday. I can only hope and pray. Please say a special prayer today for Jack to start engrafting.

Happy Easter to Everybody. Say a prayer and keep your fingers crossed for engraftment please.

It's 18 days out and still no sign of engraphment. The doctors are still saying it takes longer for bone marrow to engraph so they are not panicing. However, they are starting to work on plan B. This group of doctors are planners. They want to have an alternate plan in place for the "what if". So today they had me typed in screened for bone marrow to see how much of a match I am to Jack and Roy will be here on Friday to have his blood drawn and tested. Right now they are saying if Jack does not engraph by monday they have time set aside in surgery to have his bone marrow tested. What does this mean? Truthfully, I don't know and don't want to think about it right now. This is going to work and Jack is just putting us to the test as usual. We know that Roy and I are only 1/2 matches for Jack, but I guess if there is a problem a 1/2 match with an immune system is better then no immune system. I've been to the chapel and have had the chaplin come to Jacks room and say blessings and prayers but I know that this is such a holy weekend that Jack will progress fine. It's in Gods hands.

Jack is definitely feeling much better. He has had a couple of vomiting (spewing) issues but nothing majorly concerning. He's getting another round of platelets to keep those levels up but all in all he's doing well.

Jack was in the mood for giving IV's again. Denny was his patient today.

I needed to do some laundry so I thought I was leaving Jack in capable hands with Laura the nurse practioner, Stephanie the social worker and Dr. Brown the attending Oncologist this week. (seated in that order from left to right) Who was taking care of who???

I thought they were supposed to keep their masks on? I just love to start trouble.

Jack definitely is feeling much better since the seizure and all the sedation and seizure medication. He seems to be getting back to his normal routine. He's still not eating but he's getting his necessary nutrition from the TPN. He's back to coloring and painting and wanting to play.

The only thing different is the doctors decided to start Jack on "Neupogen" (GCSF) shots, which is a hormonal drug used to help stir up the new bone marrow cells. Being that Jack had Bone Marrow opposed to Stem Cells it does take slightly longer to engraph so the doctors decided it would be good to give him a little boost, especially since Jack has fluid issues and platelets are last to come back. So, we now have, knocking on wood, prayers and a boost lets hope they all start engraphment.

Jack was taken out of the PICU and returned to his own room back in transplant. He was monitored for 24 hours in the PICU and he did great. Unfortunately from all the sedation they used for the MRI/MRV and the seizure medicine he was put on (phenobarbatol) he spent most of the day sleeping. The squash doctor doesn't seem to think Jack will have another seizure, but anything is possible. Part of the whole transplant procedure is waiting for the levels to come up and we've been told that the platelets are the last to come back to normal so the patients tend to need frequent transfusions of platelets. The thinking for the seizure was possibly the low platelets so it was decided that they would be giving Jack more then usual. Roy went back to Fairfield today to be with Christina and I am so looking forward for this week to go fast since Christina will be off from school for spring break after Easter and she will be down here in Philly for the whole week. I'm planning a lot of sight seeing for her vacation. I'm very excited and just miss her terribly. Roy and Jack will have a week of male bonding. Hopefully we'll start to see some engraphing really soon. Keep praying.

Well we are 2 weeks out and still no sign of engraphment. However, Jack likes to keep us on our toes. I wish I could say it was an uneventful morning but I can't. I was awoken this morning by Jack making the sound of what seemed to be hiccups but THANKFULLY I was laying right next to him when I sat up to get him something to drink and he was having a seizure. It was the scariest thing that has yet to happen in his 3 1/2 years of hospital stays. I immediately called for the nurse who came in with 3 or 4 nurses and they went right to work. The whole seizure lasted approximately 7 to 8 minutes. Once he came out of the seizure he was left with a slight palsy on the right side of his face and right arm. Shortly thereafter we were taken for a CT scan and then for an MRI/MRV to see if he had another stroke. During this time Roy was on his way down from Fairfield. Once the scans were all finished we were then moved to the PICU. At this time, Jack is stable and has recovered from the seizure with no side effects. The minor palsy has also gone away. They had to used a lot of sedation for the MRI/MRV so he's not totally himself but he sure is trying. The doctors feel that he should be monitored for the next 24 hours and hopefully we'll be moved back into our room on the transplant floor. Turns out that Jack's stroke doctor aka the "squash" doctor, Dr. Ichord was the attending physician on call for nueology and she was able to read the results of the scan right away. She entered our room and said "NO STROKE AND NO CLOTS", what a relief. They believe that with all the stress (so to speak) on the veins from hydration, dehydration and the fact that he is running low platelets (typical of transplant patients) may have caused a small vein to tear causing some bleeding on the brain resulting in a seizure. Jack has some new fragile veins in his brain from the stroke last year which probably just can't handle the ups and downs of all of this. Obviously to no fault of anyone and that the doctors have been very diligent with trying to regulate his fluid input and output he is just a very different patient and not of the typical which requires a little more attention. Thankfully Jack has these tendencies to give us a major scare but also makes everyone aware of the fragility of his issues. All the more reason that once he shows engraphment and we know if the transplant has been a success, that we made the right decision for doing all of this. Jack is never one for doing the typical side effects, he has done so well thus far. He threw us a curve ball. Please continue to keep Jack in your prayers and well as praying for the donor's cells to start engraphing and making Jack a stronger, healthier Jack.

These last 2 days have been pretty uneventful. Jack has had some issues with small amounts of vomiting and feeling a little blah. He perks up for a little while and either wants to color or play on the computer but for the most part he just lays around and watches movies. That's ok, for everything he's been through he deserves the rest.

Here are 2 of Jack's nurses. Denny and Tracey like to have fun with Jack. Denny calls Jack Bug-A-Boo and Tracey and Jack call Denny Kook-A-Doo. Jack has Tracey wound around his little finger, he got her to get him all his necessities to do IV's. Yes, Jack likes to pretend to give people IV's, she got him syringes, alcohol swabs, tubing and even tourniquets. She even had the experience of letting Jack give her one.

That was the events here at the hospital while at home............
Roy and Christina had the pleasure of attending the Mayor's Ball in Fairfield. Cheryl Cavanaugh went in my place representing the "FOUND N.E.M.O. - FINDING CURE" Foundation as it's president. The Honorable Mayor Rocco Palmieri who had attended and met Jack at the Beef Steak Dinner in October invited us to the Mayor's Ball and made Jack one of the recipients of the funds raised at this event. Mayor Palmieri gives the proceeds to the Fairfield Scholarship Fund as well as a town child who needs financial assistance and this year it was Jack and also the Autism Fund. The generosity of the evening was very overwhelming and greatly appreciated. I was told that the evening was quite a success and that everyone had a great time.

THANK YOU MAYOR ROCCO PALMIERI, THE MAYOR'S BALL COMMITTEE AND THE TOWNSHIP OF FAIRFIELD FOR THE INCREDIBLE GENEROSITY THAT YOU EXTENDED TO OUR FAMILY.

Well, today was a little eventful. Jack has been running a low grade fever and was not himself. This brings 2 possibilities, the start of engraftment or an infection. Unforunately we got the later. Jack has an infection. Don't know what type yet, but they have identified something growing in culture medium. So crank up the antibiotics and continue on. Jack is on antibiotics already but they change them to whatever works on the infection. Fortunately this does not really change the schedule of engraftment or anything like that. This is just something they deal with. We will know more tomorrow so stay tuned.
Jack also had a fight with a choclate bar today. Click View image
to see who won. As you can see Jack is a peaceful type guy. Elmo and Zoe also came by to see Jack

Not a lot to write tonight. A very typical hurry up and wait type day. The little man is holding his own. He is gaining a little weight due to his Intravenous feeding aka Total Parental Nutrition (TPN). This stuff is all your food groups, vitamins and minerals in an I.V. bag. Long term it plays havoc on the liver, but since Jack is not eating it is necessary.
It's time to introduce some of the players responsible for helping Jack get his BMT. To the left is Dr. Bunin or as Jack calls her Dr. Bunny Rabbit she is Director of Stem Cell Transplantaion. We met with her last year and again the beginning of this year. She and her team have been awesome. She really did her homework and research with Jack since he is the first N.E.M.O. patient to be transplanted at CHOP. Jack is also the 1st N.E.M.O. patient to recieve an unrelated Bone Marrow Transplant. Anyway, Dr. Bunin is one of the sharpest tools in the shed. That is Dr. Norris to right of Jack, she is one of the fellows in BMT unit. I have not officially met her, but I understand she's a really nice person and pretty smart too.
Of course we still see the Big Man, Dr. Orange but as he said it's in the hands of Dr. Bunin and her team. There is a picture of Jack & Dr. O on transplant day. He came by to celebrate Jack's new birthday with him. Over the next few days we'll talk about some of Jack's nurses.

Have you ever posted in the Comments or Guestbook and it didn't show up right away, or it took a day to get posted? Here's why, The spam filters for either are not so great. So to avoid having advertisments for Viagra and other ED (erectile dysfunction) drugs and porn sites. All comments and guestbooks posts are filtered. This means they are not posted until we release them. We are trying to be diligent and most of the time we are notified by email that they are waiting for release. Please keep posting and we'll try to keep up with releasing them as quickly as possible.
Thanks,
Jack, Roy, Charlotte & Christina

Well the word is out and the faithful readers want an update. 1st I want to say Thank You to all of you for caring about Jack. I also want to say Thank You to everyone who has left comments on the blog or written in the guestbook. All your words mean alot. We tell Jack who's checking on him and who's leaving notes. One note caught his fancy today and that came Firefighter Gene he told Jack he has firetruck visit waitng for him. Well that kinda set him off in a good way. He loves his firetrucks.
Anyway that last 2 days have really been uneventful. Nothing new to report, Jack is having some issues with mucocitis aka mouth sores. They have yet to rear their ugly heads but it causing Jack to vomit very small amounts of mucus. He does not seem to be in any pain, and his spirits are great. His medications seem to help him vomit also.
Charlotte came back on Sunday and brought Christina and Oma, shortly after they arrived Jack's Candi la la & Zeus came to see him. He was thrilled to see Candi & Zeus, they brought him some Legos and some other things. He was loving life. He and Zeus built a ship with the Legos and were clowning View image
around. Candi and Charlotte then showed their artistic side by decorating the windows in Jack's room. With some help from Mussy. This is the view from across Jack's room. Christina went with Rochelle from child life and was doing crafts making flowers.
Monday turned out to be really uneventful. Jack got some platelets and hung with Mom. Jack hasn't been eating the last couple of days but he still needs to get his food tray. He has to see it. He also got a new movie "Thomas and the Magic Railroad" he had to watch that all day. He loves it.
It will probably be another 5 -7 days or longer until we get to engraftment. Engraftment - is when the bone marrow infused during the transplant "takes" or is accepted by the patient, and begins producing blood cells. Please keep your fingers crossed and say a prayer.

One week out!

Charlotte went home to Fairfield on Friday and surprised Christina. They started their girls weekend by going out for dinner Friday night. Saturday they started the day with softball practice and then went to a craft fair and spent the day together enjoying each others company.

I'm holding down the fort here at the hospital. Male bonding with Jack wasn't the way I thought it would be. Jack got an early start to the morning and shortly thereafter he started vomitting. It hasn't been a whole day of vomitting, it happens mostly when he coughs or takes his medicines. Jack's still playing playdough, coloring and reading so it doesn't seem as though he's really too bothered by stopping what he's doing to spit up a little. He is one tough S.O.B.. I just keep hoping it doesn't get any worse.