cure4jack

We made it!!!!! We are here in Philly. Jack had his line placement this afternoon and now that he can finally eat, he is eating crunchy cheeto's and waiting on his dinner tray.

Chemo starts at 2:00am and Roy and I are very nervous. I am actually doing the typical mother thing. (second thoughts) I know we are doing the right thing and Jack is going to be just fine. Please remember to keep us all in your thoughts and prayers.

God Bless

Day # 1, Day -11

After a long wait in Pre Surgery to get Jack's central line. We finally got moved upstairs to the Bone Marrow Transplant (BMT) floor 3 Central. Denny and Dr. Bunin were waiting for us. Denny is going to be Jack's primary nurse and not to mention his new buddy. Dr. Bunin briefly examined Jack and talked about what was going to go on over the next few days. Denny then took us on a tour of the unit. He explained all the do's and the don'ts and told us we would be moving to a bigger room tomorrow (Room 3C14). He went over the road map of Jack's treatment and explained all the lingo. A lot of stuff to remember.

Day Two, Day -10

They started Jack on some medications to ease the affects of the chemo: Dilantin to prevent seizures, and an anti - nausea medication. Chemo was started promptly at 2:00am. Jack slept right through. So its been 24 hours of his first day of Chemo and he went through it with flying colors. Of course Jack has won over everyone in the unit and is being such a trooper. Thankfully he still has an appetite and is requesting all his favorite foods, but the unfortunate thing is he can't have his pickles. He is on a low bacteria diet and he is unable to have any fruits and vegtables with thin skins, so pickles are out.....we're dealing with it. Hey not for anything, if this is the only issue we have to deal with then we will surely be blessed.

Roy or I will continue to blog as much as possible right now is a good time since Jack is not feeling any of the affects of the chemo, next week will be a different story when the intense chemo is started.

Thank you all for your constant thoughts and prayers.

Day -9

Believe it or not Jack ANC level went up today. I really don't get it, I'm assuming that his levels would continue to keep going down with all the chemo he is getting, but they say we will see the levels going up and down.

Tomorrow (saturday) will be his last day of the first part of the chemo. Sunday will be his day of rest and then Monday the big guns start. I'm so thankful he is doing as well as he is. All of our prayers are being answered so keep them going. Thank you all.

Day -10

Jacks ANC level (Absolute Nutrifil Count) has gone down. Which is the sign that his immune system is starting to get wiped out. He is still driving me nuts so thankfully the effects of the chemo hasn't bothered him in any way. Nothing very important to pass along other than we're both enjoying ourselves, watching movies, coloring, reading books and most of all quality time. But missing everyone at home, especially Christina.

FYI

All this time we have been telling everyone that Jack is getting a "stem cell" transplant but he is actually getting a "bone marrow" transplant. Basically the differnce between them is the term used in how the cells have been harvested from the donor.

Day - 8

Jack is holding up great, he is a true champ. His ANC went down over night as we are approaching the end of day 4 of his chemotherapy. Tomorrow is a rest day "NO CHEMO", Giving Jack a break to recharge his batteries for the next round. Round 2 is said to have more side effects; mouth sores, nausea, and general not feeling well. Hopefully it won't effect Jack.
Life in the Bone Marrow Transplant (BMT) unit is quiet. Not alot of people around, kind of seems like night time 24 hours a day. Also a lot of do's and don'ts; can't keep any food or drink for more than 4 hours. Hand washing is a big DO which is understandable. Jack has to have a bath every day no matter what. Sheets, pillows, blankets no more than 24 hrs.. Jack is on a low bacteria diet, everything has to be cooked - no fresh fruits or vegetables, no pepper. Jack can only drink Dasani bottled water, hot tea has to be made w/Dasani. Jack has to have his mouth swabbed 4 times a day with Peridex which is to help keep his mouth free of germs etc.,etc. He taking all sorts of anti everythings to try and prevent any infections.
We made his day by bringing Christina to see him. He loves her so much, everything is always Tina this, Tina that.
He was reallly happy to see her.

Roy and Christina came to Philly friday night and Tina and Jack had a few minutes together before I swept her up and went to the apartment. She and I stayed up a little late watching movies together and just spending quality time. We woke up Saturday morning kind of on the early side and high tailed it out of the apartment and went over to "The Franklin Institute Science Museum". It just so happens that our very humble doctor, Dr. Jordan Orange, was giving a talk on Primary Immune Deficiency for the Immune Deficiency Foundation (www.primaryimmune.org) at the Museum that morning. So we stayed for a little while and listened and we sat with our favorite girls from Day Medicine. Dr. Orange gave a very interesting and informative talk on Immune Deficiencies and what studies have been done and ways in which to help prevent infections, etc... I also found out that Dr. Orange becomes quite the comedian when he is giving his talks.
Anyway....Christina and I enjoyed our afternoon looking around the museum and then off we went to see Jack in the hospital. We stayed a little more then a hour and went back to the apartment. Again we watched movies ordered pizza and stayed up late. Typical girls night. It was so nice. So today is the day where we decide if Roy is going to take Christina home or if she'll stay an extra day and miss school. I'd hate for her to go back home but I don't want her to miss school either. It will be very emotional for the both of us. I miss her so much when she is not here. We'll see what happens.
April vacation will be here soon enough and she'll spend the week with us here in Philly. We'll do more site seeing and spending time together.
Keep praying!!!

Sunday was Jack's day of rest from his Chemo Therapy. His blood levels have been up and down like a bad day on Wall Street. The Dr.'s & nurses say this perfectly normal. Pop Pop took the 4 1/2 hr. ride from upstate N.Y. to see Jack. Jack was thrilled to see him. Pop Pop brought Jack a bat and a ball and they played ball in the hospital room. You would never know he just went through 4 days of chemo. Trying to run around the room while hooked up to I.V. was a bit of a chore. We were careful so he could not go to far. It was a really good day for Jack a little fun before the next round which starts Monday.

The judges scores are in from Round 1; Jack 4, Chemotherapy 0. 4 days no side effects. The second round of Chemo Therapy started today. All is going well so far. A little irritability but can't tell whether that's just Jack being Jack.

Another day another dose of Chemo. Dr. Bunin is pleased at how Jack is handling his treatments. He is fussy once in a while and he is not liking his baths in the morning. Nicole & Brian came down from home to see Jack today. He was thrilled to see them. They brought a new hot toy called the Robo-Raptor, this thing is awesome. It is a remote control dinosaur with infared vision so it doesn't walk into things. It is really neat. Brian and Jack were doing the male bonding thing playing with this thing. Everybody on the floor was looking in the room to check this thing out. We can't thank Nicole and Brian enough for coming and hanging out with Jack.

Its another day on the Bone Marrow Transplant floor. Jack's levels are coming down slowly and Dr. Bunin is still can't believe Jack really isn't having any reaction to the chemo. We keep knocking on Wood and Praying a lot. Jack is full of energy and still eating. Praise God. We are so thankfull but we are told that sometimes the reactions comes 4 to 5 days after the chemo, so the worst may be yet to come.....But not for us!!!! Keep knocking wood and praying with us. KNOCK, KNOCK, KNOCK, KNOCK, KNOCK!!!!!!

Just a couple of more days til transplant and Jack is still doing very well. He seems to be a bit tired at times and a little cranky but as long as he's not vomiting we doing great. Grandma Lynnie came to visit and brought some craft things for Jack to do, so we're cutting and pasting and decorating our room.

Keep Knocking and Praying!

Today is the last day of chemo. So far so good however today also starts Thymoglobulin which Dr. Bunin calls the rabbit stuff and this will turn Jack into a rabbit. Truthfully, this stuff is used to help deplete T-cells to help minimize the Graft vs. Host Disease (GVHD). GVHD is exactly what is sounds like. Graft (donor cells) and Host cells get together and fight over territory. We are hoping for no GVHD and that the donor cells take over with no problem.

Keep Knocking and Praying.

TWO DAYS TO GO!!!!!

Well, Day -2 didn't go as well as the previous nights. We actually experienced a very scarey effect from either the chemo or the thymoglobulin. The Thymoglobulin ran over six our and it finished around 8:30 pm. I realized that something was wrong when Jack had become very quiet and didn't want to be moved or touched around 7:30pm. First reaction was Jack fell asleep sitting up, as horrible as the evening went it really was very adorable.
Unfortunately the adorable thing fell by the way side when Jack started to spike a slight temperature of 100.4 degrees. After that everything went south, vomit, watery stools and even his blood pressure. That was very scarey for about 45 mintues and 3 different blood pressure machines Jack was started on a bollis of IV fluid. Jack had started to dehydrate which, as most of you know, is Jack's biggest down fall. The combination of fluid and oxygen started to bring Jack around along with a room of 4 nurses and 3 doctors. Finally Jack was able to have a normal blood pressure reading and was given 3 bollis' of fluid and a pint of blood. So need less to say it was quite and interesting and scarey night. Jack, as always came through it with flying colors and woke up this morning looking for his breakfast tray and for Mommy to make him a cup of Tea (yes, Jack likes hot tea).

We are less then 24 hours to transplant and Jack recovered remarkably from the crazy night before. He is such a trooper. Jack recieved his second dose of Thymoglobulin and did much better. This time is was given over 4 hours and 3 hours later he still had no reaction. I'm hoping the night will be just as good as the day. Roy, Christina and Oma are coming for the weekend so it will be nice for me and Jack to see my mom and we will all be here for the transplant tomorrow afternoon.

Please remember to keep Jack in your prayers as well as the donor who so graciously put themselves on a donor list and was able to give Jack his new bone marrow. Tomorrow is the big day and hopefully it will mark a new beginning for our family and for Jack to have a long healthy life. AMEN

Well it's T-30 and counting, Jack is having a little issue with the after effects of the Thymoglobulin again. Jack has been retaining a little fluid. They are giving him Lasix to get rid of the excess. Jack's ANC level is done to 0, This means he's ready for transplant. He's primed for his New "N.E.M.O. - Free" Bone Marrow. They say this part is very anti-climatic, it's similar to a blood transfusion. But a life saving/giving blood transfusion for us. Keep your fingers crossed, say a prayer and keep Jack in your thoughts and prayers. I will blog the rest of this later.

Jack's "N.E.M.O-FREE" Bone Marrow came in this bag, It was started at 4:53 pm and ended at 5:35pm. It was emotional, uneventful, and brings us much hope for Jack's future.

I wish I could say our first night and day after the transplant was great but I can't. The other night Jack suffered from dehydration and saturday night Jack suffered from overhydration. Because the doctors didn't want to get behind the eight ball with Jack and risk him dehydrating again, they upped his fluids. Around 8:00pm Jack started to have very labored breathing. He held off a couple of hours but by midnight he really needed the assistance of oxygen. Because of all the extra fluid his body was unable to expell it all out so his lungs are surrounded and gave him shortness of breath. Thankfully it's not blocking any pathways of the lungs. It was another evening of many nurses and doctors doing everything they can to get him comfortable. Respitory specialists came with nasal cannulas and then had to switch him to a mask. I had to call Roy to come back to the hospital at 3:30am because there was another threat of going to the PICU. The doctors started him on some major diuretics to help him expell the fluid as well as give him platelets. It was a very long night and a long next day as well. Jack is still on oxygen but his breathing is definitely not as labored as it was and will remain on oxygen til he obviously doesn't need it. We found out that typically what happens in transplant (before, during and after) the body becomes "leaky" and the person retains some fluid however in Jack's case they had given him the fluid to keep him hydrated so on top of what his body is doing "naturally" because of the chemo and the extra fluid he is retaining he is having issues with not being able to get it all out. His disposition is fine and he is still asking for his food trays which is great for Jack. Through all of this Roy and I have remained calm and also try to keep up our sense of humor. We keep praying and knocking on a lot of wood. We knew going into this that there would be risks and possible complications. So we hit a bump in the road and Jack will get through this as he always does. We also know that the worst may be yet to come. We just keep faith.

Jack is still on oxygen and it doesn't look that will change any time soon. He is the most remarkable child. He doesn't like the nasal cannula or the mask, but the kid keeps them on. Although I have to admit, when his Oxygen Saturation level goes down and he has to wear the mask he gets thoroughly p-o'ed and doesn't even want to talk to anyone. It's really quite comical and pathetic at the same time.

As far as transplant is concerned all Jack's levels are still non-existant and we don't expect to see anything changing for at least another 10 days to 2 weeks. He still hasn't had any other side effects and we are praying he doesn't have any. The extra fluid and oxygen issue is enough.

We don't want to forget about our other child, Christina came for the weekend and I think she may have caught something here at the hospital. She went home this morning with Roy and he had to take her to Dr. Levy's and he said its just viral. This is a very difficult thing for me to go through to not be able to be with her. So it's up to Roy to care for Christina while I'm here with Jack. I'm hoping to be able to go home this coming weekend to spend some "Girl Time" with Christina and Roy will do some major bonding with Jack. I'm not sure if I really like that idea because Roy has already taught Jack the fine art of buy on e-Bay so they are spending quite a lot of time watching items and then bidding on them. We're really going to go broke now ---- lol.

What a day we had today. Jack is doing great. He is still wearing the oxygen, but everything is starting to get better. His lungs are not as muckie sounding, his breathing is great (w/oxygen) and he had 3 visitors today. Aunt Bubbles (Julie), Aunt Ronnie and Aunt Mussy (The Golden Girls named by Renee the Transplant Secretary) came to visit. Jack had a blast. Mussy is a little off the wall so need less to say, the rest of us just laughed along with her antics. Jack loves her that he even ate for her and took his medicine, 2 tasks that I have not been successful with. Aunt Julie bought a fantastic Thomas the Tank Engine 60th Aniversary Book with wonderful stories that Jack and I have already started to read. Unfortunately I am unable to post the pictures at this time because Roy did not leave me the wire to connect the camera to the computer to be able to download them, but they will be posted by the end of the week. It was definitely a pleasure to visit with such good friends and see Jack so happy to see them.
Thank You Julie, Ronnie and Mussy for such an enjoyable day - Love You All.

Good Day Today!!!! Jack was very congested this morning and finally at noon he asked me if he could take off his nasal cannula to blow his nose and after that we never put it back on. Jack is no longer on oxygen and hopefully won't need it. The doctors say he still has a little fluid but not nearly as bad as it was. They are still watching his fluid intake and working on giving him the proper nutrition without over hydrating him again. He's getting TPN (total parental nutrition) which is protocol for all transplant patients. Most of these children get mouth sores and something called mucousitis from all the antibiotics given which make them not want to eat and they don't want the kids to fall behind on their nutrition. Thankfully Jack has had no signs thus far and we pray that he doesn't get them. His blood levels are not coming up yet and his hemoglobin is down right now so Jack got red blood cells today to hopefully boost them up. Otherwise he is doing very well. Thank you all for keeping us in your prayers and please continue to do so.

Day +5 and Day +6 have really been uneventful. Jack is doing well. He seem's to be having some signs of Mucouscitis, but he isn't very bothered by it. The doctors put him on a Morphine drip which is giving him small doses of morphine every 4 hours and we have a button to push if he seems to be in more pain. I was a little hesitant, as you can imagine, to put him on it, but the doctors say that this is around the time where these children really seem to be in pain. So, I'm hoping that the morphine is keeping Jack comfortable. He's coloring and playing with his physical therapist and we're doing a lot of reading. (Thanks to Aunt Julie bringing Jack the 60th Anniversay stories of Thomas which Jack just loves - Thank You Bubbles) Anyway, the doctors are amazed at how well he seems to be doing. We still have a long way to go and he may just get worse before he gets better. We are keeping our fingers crossed, knocking on a lot of wood and praying that he doesn't get any worse. I'm hoping faith will prevail.

Thank you all so much for reading our blog, posting comments and/or emailing us. It is so nice to know how loved Jack and our family is. The power of prayer is certainly working, so keep it up.

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.

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.

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.

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

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 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.

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.

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 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.

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.

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.

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.

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.

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.

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.

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.

At 7:00am phlembotomy came in to draw Jack's labs, we tried to go back to sleep when all of a sudden, Jack disappeared and these 2 masked men appeared..........

Here's the scoop, Jack got a yeast infection and Jack had to have his central line taken out. He has started tube feedings again and his counts have gone up after being flat for 3 days. Jack is considered to be engraphed since his vntr's were 95% donor cells last week however the doctors drew labs for that again this week. The doctors took Jack off so many medications because he doesn't have his broviac and unfortunately he has 2 IV's one in each arm. He's such a trooper they even have to do peripheral sticks for drawing blood and the kid doesn't even flinch. So since the peripheral IV's can't handle the artificial nutrition (TPN) they started him on his J-tube feeds again and thankfully he is tolerating it well. So, actually, if this kid would just start making some worthwhile cells, he'd be ready to go home, but unfortunately, he's being pokey and we're still moving forward with giving him a boost of donor cells next week. If by some slim chance his counts should go up by the end of the week the doctors would reconsider giving him the boost. He's been the miracle child this far, lets all just continue what we're doing, crossing, knocking and praying.
As you can tell by the 2 prior blogs, we try and have fun here in the hospital, who says this has to be a morgue? That's Roy's job to deal with those things.

I would just like to add one more thing. Many times we have been asked what we need or if anyone could do something for us and I would just like to say Thank You to everyone for asking and I have finally came up with something you all could do for us. Well, it wouldn't be for us directly but it would be a way we could repay the National Bone Marrow Registry and the donor who is so gracious to give Jack his cells not just once but twice. So here is.....Please consider contacting the National Bone Marrow Program and being a donor. I, unfortunately don't think I can be a donor because of my genetic background, hence having a Jack, but I will try as well as Roy to be on the national registry. Having spent so much time on the Oncology Unit my eye's have been opened to the amount of children who have cancer or other immune deficiency and with the help of wonderful people who enter into the registry, have a chance of life with bone marrow transplants if they don't have a sibling match. There is also a boy in Texas who has NEMO and is waiting for a transplant. His sister is not a match and his parents have not been successful with Invitro Feritilization to make a child to match their son. You could be that match for Jackson (www.cure4jackson.org). For information on becoming part of the National Bone Marrow Program visit www.marrow.org.

Thank you all again for your continued thoughts and prayers.

P.S. Now you can recieve email notification when a new entry has been made. If you would like to be put on the nofication list send us an email at cure4jack@gmail.com & Say "I want to be on the list"

So what is it like to sit in the the same room all day all night? If you ask me it's boring, it's like watching grass grow.
In reality we are watching cells grow, and we are doing just that. The last 3 days we have seen some really positive growth. Thursday was a really impressive day ANC 42, Whole cells 76. That for whole cells was a record, went from 20 to 76 GO JACK! Friday, it gets even better ANC 114 Whole Cells 78 YAHOO JACK. Saturday ANC 160 Whole Cells 50. 3 great days with 3 sets of great numbers. Yesterday Jack had a P.I.C.C. (periphrel intravenous central catheter) line placed to replace his broviac that was taken out on Monday. It is in his right arm this time. It was a long day waiting for Interventional Radiology. First it was supposed to be 2 -2:30, then 3-3:30, finally happened around 4:30 - 5:00. That was even being on the schedule. Jack as usual took a truck load of sedation to get him to go to sleep and even woke up during the procedure. After it was all done you would have never known that he was just sedated. He is a wild man. We made some progress with eating today, he ate a few spoonfuls of sliced peaches. It doesn't sound like much but it is a big step.
Dr. Brown was in today and Jack was being Mr. Charming. He turns it on and off. Anyway she said we are set to do a boost on Thursday the 11th. Since Jack is at 95% donor cells they will totally deplete the "T" cells and just give him the stem cells. They are anticipating having more then enough so they are going to freeze a bunch for future use if necessary. But they won't be needed. Gotta think positive. This all so scientific. Dr. brown left the room saying "keep everything quiet tonight" I said "I'll try." Yeah right! At about 11:00 pm Denny (the diaper head nurse) says he doesn't like Jack's blood pressure it's to low and his fever is a little elevated. So I'm thinking here we go again. He monitors Jack for the next 45 min. and it doesn't go up. So he calls Dr. Hwang in and she calls Dr. Brown and so the story goes yada,yada,yada I'm up until 3:00 am. Jack decides he is going to wake up at 7:30 and start the day. I wanted to die. This was 2 weekends in a row that Jack was not himself. Dr. Bunin toild me on Friday if Jack got sick over the weekend it would be my fault and I wouldn't be able to stay anymore.
So, I apologize for the delays in posting information. I promise all of you that we will be more diligent in posting.
Thanks for the response on the blog notification email. There's still time to get on the list if you haven't emailed me yet (like it's going to expire). Just say "I want to be on the list". Thanks for the prayers, crossing and knocking.
God Bless you all.

Surprise, Surprise.....Jack had an ANC of 425 and a Total Cell Count of 100. This has been an emotional, physical and mental rollercoaster ride. One day up the next day down. As Roy said, "long days, short nights". Its gotten to the point that its really time to go home, but we know there is no possibility yet. I miss being home with my family and imagaine this, I even miss Roy........don't tell him I said that.......Thank God we still have our sense of humor.

Jack is actually doing very well. We've made some progress over the last couple of days, Jack has gone on the potty twice. That's big news!!!! He even asked to go himself and no pushing from me. He makes me call his nurse in to see him sitting on the bowl, Tracey even got him a magazine to read. He then tells the rest of the nurses that he pooped on the potty and they give him high fives and make him feel so good. Maybe by the time this is all over I'll have him semi potty trained.......oh hear my prayers........

He's up and going early in the morning however he is getting cabin fever. He wants to walk in the halls and go to the playroom more often now. So it's hard to keep him down. I became friendly with one of the mom's, Tammy who was just discharged yesterday. Her son Tyler also had a transplant and he did very well. Anyway, Tyler and Jack finally just met the other day through the window of Jack's door and Tyler gave Jack a "Star War's" Light Saber and also a "Nerf" Basketball hoop, so needless to say, Jack has been having lots of fun playing "Star War's". I even had to locate a copy of the orginal movie for Jack to know what the Light Sabers were all about and he really enjoyed watching it. As you can tell, Denny and Tracey enjoy playing as well and they improvised with flash lights.

I call them Diaper Dudes. Again this all happens at 7:00 in the morning, don't these nurses have better things to do????????

I really want to thank Tammy and Tyler for giving Jack those wonderful gifts and send hugs and kisses to them. I know we haven't mentioned much about the other patients here in transplant but I think its time. We've met some amazing strong people who are battling any parents worst nightmare.....Cancer. I never realized the amount of children who are affected with this horrible disease and how many different types there are. I've had the pleasure to read through many of their websites and I have been enlightened by my ignorance. Please continue to keep us in your prayers as well as those who are affected with Cancer. You can learn more about Tyler on his web site at: http://www.caringbridge.org/pa/tylerlausten/

Jack is learning how to start his day...........

And Brushing his teeth

Sorry picture is a little blury but it was hard to get a clear picture with the kook-a-doo's moving and grooving

Tracey and Kim got Jack up and dancing to "Accidentally in Love" from the movie "Shrek"

Then....(below) they got Denny in on it.

The Rollercoaster Ride Continues................................

Jack's ANC went down to 265 and his total cell count went down to 25 and to top it off his VNTR's were 90% - 5% less then last week................See what I mean about an emotional, physical and mental rollercoaster???? So this is the story. The hospital got the donor cells today and the stem cell specialists who prepare the cells for transplant are working on getting them ready for Jack, however they will be frozen. After the transplant team having a very indepth meeting it was decided that Jack would undergo 4 days of conditioning (chemo), then have a day of rest and then the new transplant. They are calling this a mini transplant or technically a Non-Myleo-Ablative Transplant. They are not looking to totally wipe out the cells but make it so that these new cells have an ability to really get into his bone marrow without anything in the way. We can't wait til a year from now to meet the donor, if they are willing. What an amazing person to donate their cells twice for this child. The donor knows it is for a child but they do not know that it is a boy and where they are going to.

Needless to say, we are going through this again but not the extreme of the last trasnplant......ultimately with a quicker, much better outcome. This child is strong and has the will to live and fight. He has shown us and all the doctors that he can withstand just about anything, so this mini transplant should be a piece of cake and hopefully no side effects from the chemo. Please continue to keep us all in your prayers.......most of all pray that the donor cells are stronger and better then before.

It's old news but it's fit to print. Last Tuesday the head coach of the Philadelphia Eagles Andy Reid stopped by the Bone Marrow Transplant Unit to visit all the kids. Coach Reid gave Jack an Eagles Bear (somethings wrong with that, almost like a double negative) and an autographed Hat. These photos turned up on the Eagles Website: Jack & his Eagles Bear. Jack getting his bear from Coach Reid. After the kids get the bears and the pictures are taken. The hospital kidnaps them, stuffs them in plastic bags, suffocates them and then gives there limp, lifeless bodies back to the kids. Imagine that? Well maybe it's not that extreme. The kids aren't allowed to have or keep stuffed animals right now because they gather and hold dust and all the good germs that could promote infection.
Are we suposed to be Eagles fan's now??????????

TO ALL THE WONDERFUL MOTHERS IN MY LIFE

God smiles and says..."A mirror will suffice."

(This is on the front page of Tyler Lausten's web page (http://www.caringbridge.org/pa/tylerlausten/) and I asked his mom Tammy if I could post it on mine. I know Jack does not have cancer however it touch me still the same.)

Well girls, I hope everyone had a very Happy Mothers Day. I wish I could say I did. I actually spent the day laying down and/or running to the bathroom.....if you know what I mean. I am now banned from the hospital until my symptoms go away. I had to keep Christina out of school today (monday) but I survived the ride home so I can get her to school tomorrow. Once my symptoms pass I will be returning back to the hospital, hopefully tomorrow. Jack will be receiving his stem cell transplant/boost on Wednesday and I want to be there. He is doing fine on this round of chemo so lets pray he keeps it up. Roy and Jack are having more time to bond and like father like son, they both don't even care if I am there or not......(Thanks Roy!!!!).

"When your transplant day's start to look like a mathematical equation, then there are no rules" as I quote Denny.

Jack got his "boost/stem cell transplant" today. The cells came in two 60ml syringes that Dr. Bunnin herself pushed through Jack's picc line. It took all of about 3 minutes for Jack to receive them. We've been waiting for this and it was very anti-climatic. There were a lot of positive vibes and we are all looking forward to engraphing quickly and going home. We pray.

Sorry for not blogging, but honestly we haven't felt much like it. There is really nothing big to write about. Jack has shown some signs of cells stirring, but nothing of consequence. The only big thing is that Jack lost his picc line again, due to infection. We now have a peripheral IV and he is doing well. We're hoping that he continues to respond to the antibiotics and the cultures come back negative. They have him tentatively scheduled for another line for Friday, but part of me says to leave it out. We don't need another source of infection when we are looking for Jack to engraph. The only good news is that the cells that Jack is starting to make is showing to have nutrifils which Jack was not making from the first transplant, so if he continues to show cells, then he is going in the right direction. Just keep praying and the sooner he starts making the right cells the sooner we can go home. Jack is really starting to get bored and asking to go home, which is a little sad. He's got everyone wrapped around his little finger and gets everything he asks for. I'm not real happy about it because I will end up with this terrible monster when we go home. Doesn't matter, I'd rather have the monster home then here in the hospital.

Enough of that..........

Through my experience here in CHOP and being part of the Oncology/Bone Marrow Transplant Unit, I have come to meet some very incredible people. Not only the doctors and nurses but the families we've met. I had the pleasure to meet this incredible mother, Eileen Caraker. Eileen's son Bradley lost his battle with Leukemia (ALL- T-cell) on Thursday May 18, 2006. I can't imagine what the Caraker family is feeling, but I do know that in the very short time and few moments I got to speak with Eileen, she is an absolutely amazing women and I am truely inspired by her incredible stability and faith. I wish I could have really gotten to know her. Please read Bradley's journal at www.caringbridge.org/visit/bradleycaraker and remember to keep the Caraker family in your prayers.

Apologies to all the faithful readers and all the prayers, crossers, and knockers. It has been very uneventful over the last week UNTIL NOW!!!!!!!!!!!!!!!!!! Numbers are climbing, Jack is jumping, and getting our hopes up. It looks like the boost from last week is working. Cell numbers are higher then they have ever been before. Still have a little way to go, this is a marathon not a race.
Jack has been a busy boy around the hospital. He slayed Derek in Star Wars

He has also been patroling the halls of the BMT unit here at CHOP

They are really awesome people her at CHOP from Dr.'s right on down to the Enviromental Services and everybody in between. They all play apart in Jack's day, from Linda and Derek coming to clean the room. Dr.'s Bunin, Brown, Grupp and last but certainly not least Dr. Orange. Nurses like Denny, Tracey, Kim, Claire, Anne, Nicole, Erin, Dana, Megan, Bonnie and all the rest who I failed to mention.

The reason for the shortage on blogs is lack of news, depression, tired and whatever else you want to tie to that. It has been just about 75 days since checking into CHOP. It's about 74 days too long. But we realize we have a pot of gold waiting at the end of the rainbow and that pot of gold is a life, Jack's life. It's about him, not about us. We have so much to thankful for, but sometimes you lose sight of that. Every parent here does, but you turn it back around and get on the right path again. We're back on the path and continuing on to finish this marathon. Most people who enter the NYC marathon aren't there to win they are there for the personal achievement. When this one is over, Jack will be the only winner. All of us are just his cheering section, his supporters, his pray-ers, his crossers, his knockers. It's working, let's help him bring it home.

Unfortunately it has been like old home weekend here on the BMT unit. Some friends who went home, came back with some complications. Tyler and his Mom Tammy, Matt and his Mom Cathy, please say a prayer for them that they get back home quickly. It is nice to see them, but not under these circumstances. I would rather see them at a social event then here. Once your gone and out of here you don't want to come back. Our prayers are with you guys.

Today, Charlotte cooked up a meal that everybody on the BMT unit who ate it seemed to welcome it. It was a big difference from hospital food. Chicken cutlet, antipasta type salad, rolls, cake. Anybody who didn't eat was foolish it was excellent. Sunday she is doing sausage and peppers and whatever else.

As always Thanks for the prayers, the crosses, and the knocks. I know the knuckles are bleeding, the fingers are getting arthritis, and your hands are becoming stuck together. We thank you please keep it going, it's working.

Day +66 & Day +13 - Tuesday May 30, 2006

We hope everyone had a nice Memorial weekend! Ours was ok......but the week is getting better......We're ready to fly this nest....well not yet, but getting there. Jack's counts are climbing on a daily basis. No holding these new cells back. No holding Jack back. He's a fighter. His nurse Erin asked if she could bring Jack or Charlotte anything and Jack said "discharge papers". He's not ready to leave, ya think? Anyway his ANC was 576 on Monday Today it was 1275, White blood cells 1.1, today 1.5. Whole cells counted 100, today 100 (they don't count higher then 100).
I spoke to Dr. Orange today and he said he is "very very happy with Jack's numbers, he is right on schedule with everything since his boost". We haven't heard from the Big BMT chief Dr. Bunin yet, (she is not on service this week) but Dr. Aplense said maybe by Friday we can get discharged. We are not getting our hopes up yet, don't want to get excited to be let down. If Friday is the day then we will stay in Philly for the week and then come home next Thursday or Friday. Jack will have to go to clinic every Tuesday to get his counts checked medications adjusted, IVIG's and so on. It will be a process but better out then in I say. Our goal is to be home for next Saturday (6/10), it's Christina's 8th birthday and she said she wants mommy and Jack home for her birthday present. We're hoping to give her that and a whole lot more for being such a good big sister and for being as good as can be expected through this whole thing. We love her so much and she deserves to get what she wants.

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.

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.

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.

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.

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!!!!

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)

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.

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 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.....

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.

I know it's been a while since we've blogged, but always remember "No News is Good News"!

Well, today, by the request of Dr. Bunin, Jack had clinic. Normally we go on Tuesdays, but Dr. Bunin asked if we could bring Jack in today instead of yesterday, she wanted to see him herself. Anyway.....we got some really great news. After getting blood work, Jack's counts have almost doubled from last week. His platelet level went from 40 to 85 (thousand, that is) and his ANC is now up in the 4,000 and his White Blood Count is now 5.2. All his counts are coming up. Dr. Bunin was very pleased to see the jump in his counts and of course, so are we. WOOHOO, YOU GO JACK!!!

We've been busy trying to get the house in order. Roy has been doing so much work repairing pipes for the pool, cutting down dead branches off trees, mowing the law and just trying to catch up on all the things that have been neglected during the time that Jack was in the hospital. We're about 2 months behind on doing things, so I never got a chance to plant flowers and the yard looks bare. That's ok, next year we'll have everything put together the way it should be, right now we're just trying to make things look decent. We're just so grateful that we're here with my mom and taking the load off of her.

On top of all the yard work, Jack's Pop-pop came here from upstate New York, on Sunday to spend the day with the kids. They had so much fun in the pool. Christina also had Charlene here for the day, so everyone had a blast.

On Monday, we had one of the families we met during transplant come here to spend the day and it was really nice. Tammy Lausten and her sons, Tyler, Dominic and Nicholas drove up 2 hours from Southern Jersey and we hung out and tried to get the boys to go swimming. I've mentioned Tyler before, he is one of the boy's who recieved a transplant the same time as Jack and he's doing very well. Please remember to keep him in your prayers and check out his website:
www.caringbridge.org/pa/tylerlausten/

A romance even seemed to happen that day. Tyler and Christina really hit it off. Roy and I are a little worried, they exchanged email addesses and have been IM-ing each other......(Tina has good taste!!)

Hey Ty, that's our little girl you have your arm around!!!.............................

(Roy's favorite line from the movie "Clueless" - "I have a shovel and a shotgun...no one will miss you"!!
NO OFFENSE TAMMY!!! You know we love Tyler!!!!!!

Cheryl even stopped by and she had fun with the boys as well. (from left to right - Dominic, Nicholas, Jack and Cheryl)

There are so many other pictures that both Tammy and I would love to post and wish we could (wink, wink).

Tammy and UH!,.........Thank you so much for coming to our house and we can't wait to do it again!!!

We've had a busy week. After going to clinic on Wednesday I've been running around with Christina.

Tina started gymnastic's camp this past week and on the first day she hurt her back. She toughed it out on Tuesday and Wednesday, but by Wenesday night it was really bothering her. So, we took her to Dr. John's a very good friend of ours who is a chiropractor and he said she pulled a muscle in her back and sort of torked her upper spine a bit, enough to make her uncomfortable. He said keep her out of gymnastics for Thursday and Friday and send her back on Monday..................Well, gymnastaic's camp is now over for Tina...................Friday night she and her father decided to horse around (I guess her back was feeling better), and she decided she was going to hog tie his feet together with a jump rope, when Roy swept his feet behind her causing her to fall back and she braced her fall with her hands and ultimately broke her left arm again!!!!!! Not again - Christina, it hasn't even been a year since the last time you broke your arm. Roy obviously feels awful about it.

So, need-less-to-say, this weekend we are staying inside in the airconditioning because she can't go swimming until we go to the orthopedic's on Monday, the hospital put her in a soft cast. She is already having a hard time trying to decide what color cast she wants. She is actually thinking camouflage. Whatever makes her happy and of course we'll get a waterproof cast so she doesn't loose out on the pool for the rest of the summer. She thinks its pretty cool, too. I just don't want broken bones to be a habit.

Send her a email, she loves getting mail, however not great at writing back yet.
bubbagirl98@aol.com

Day +65 - Friday July 21, 2006

We got a phone call from Dr. Bunin yesterday afternoon at 3:45 with the news that Jack's engraphment results came back and he is 100% Donor!!! This kid is holding on to those donor cells. It's all those prayers, knocks and crosses you are all doing for us. Thank you so much and keep them coming.

On top of that good news, the little experiment we've been doing with eliminating Jack's night feeds and giving him an opportunity to eat on his own as well as keeping him hydrated, is working. So far so good and we are all on the same page with what we're doing, so we're going to keep it up with hopes that Jack will sustain his weight and get the nutrition and hydration he needs. Again, thanks to all of you who have been praying and supporting us.
Everyone enjoy your weekend. God Bless.

"More tears are shed over answered prayers than unanswered ones."
(Mother Teresa (1910-1997) Albanian-born missionary).

Day +70 and +71- Wednesday, July 26, 2006 and Thursday July 27, 2006

I don't know how this happened but, Jack got admitted to his same room again.................very strange..................

We were doing alright with our experiment with the formula, when on Friday night Jack started having some stomach cramping, which was very uncomfortable for him. The weekend went on and seemed to become more frequent. We knew we had an appointment with the new gastroentestinal doctor for tuesday, so we were hoping that either the cramping would go away or the doctor would come up with a reason for it.

Tuesday morning Roy and I left home early to go for the GI appointment which went pretty well. It was decided that the only way we were really going to know what is going on with Jack's gut was for him to go in and take a look through endoscopy and colonoscopy. No one really was worried about his stomach cramping. After that appointment we went up to clinic for our regular transplant appointment and we found out that Jack lost 3 pounds which is really NOT good. So, what is causing all of this? The lack of formula or whatever is causing the cramping. We went home and Jack's gut symptoms didn't seem to get better. We had a rough night with a lot of stooling and cramping and Jack woke up wednesday morning just not feeling like getting out of bed, which is very unusual for him.

I called down to CHOP and spoke with Ginny one of the nurse practioners and we finally decided that we didn't want to leave Jack so uncomfortable and that it would be wise for me to have him admitted and then they could work on having his scopes done during an admittance rather then wait for the GI scheduling department call us with an appointment over the next couple of weeks. So, down I traveled to Philly and Jack got admitted yesterday afternoon. We found out on Tuesday that Matthew Brand was getting admitted for stomach cramping and he was going to get a scope, too. When we got to day hospital where they started some fluids, Matthew and his mom Cathie came down to sit with us and waiting with us til we were admitted into our room. It seems quite coincidental that both these boys have the same symptoms?...............

Jack is in his glory, his girl Tracey was his admitting nurse and she was in til 11:00pm and Jack woke up to his buddy Denny being his nurse today, Linda coming to see him as well as his other girl Sherise and his all time favorite play pal, Derrick. Jack still has the cramping but it sure doesn't seem to bother him as much with all his friends around.

So far today we still haven't been scheduled for his scopes which means they will either schedule it for tomorrow (friday) or schedule it for monday, and I will be so upset that they will make us stay here for the entire weekend. Please keep those fingers crossed that they get us in for the scope tomorrow and most of all pray that his symptoms are just that from a virus and that his gut really is starting to look good and that the transplant is helping it get better.

Thank you all again for continuing to keep us in your thoughts and prayers. God Bless

Today we busted out of CHOP, just in the nic of time. Jack is an absolute terror. He doesn't like being there anymore, so he has become very angry and takes massive tantrums - I have the scratch marks to prove it. So anyway, sorry for not updating, I was having some difficulties with my laptop (it's obsolete) and Jack was giving me a hard time whenever I tried to leave the room.

Since last Wednesday this is what happened, on Thursday the GI doctors decided to have Jack get an x-ray to see if they could see anything strange going on around his gut. From there they decided to have Jack get an upper GI to make sure that he doesn't have any obstructions to be able to give him the go-lytely flush (that's an oxy-moron cause it doesn't go so lightly...). So, needless to say, we waited out the weekend for Jack to get his endoscopy and colonoscopy on Monday. While the doc's were looking inside Jack they were able to get biopsies which we should be getting some results tomorrow. His gut is definitely inflammed but the biopsies will hopefully determine what is causing this. There are so many factors that have to be considered so nothing is being changed until those results come. They weren't surprised at what they saw. Jack's gut is pretty raw. He definitely has some ulcers and an "inflamatory bowel"-like issues. Again, once the results are in we will know better.

We got home late this afternoon and Jack is still not really up to his old tricks yet, but I'm sure they're not far to come. He's lost 3 pounds and he looks really frail. So my job this week is to fatten him up. I am determined to do my absolute best in doing so. Please pray really hard tonight that the biospies do not show anything really serious and that Jack's gut just really needs time to heal. I know his new immune system is only almost 3 months old and Rome wasn't built in a day. Faith has brought us this far, I'm sure faith will carry us through. Thanks for all the knocks, crosses and prayers, keep them coming.

The only limit to our realization of tomorrow will be our doubts of today. Let us move forward with strong and active faith.
Franklin D. Roosevelt (1882-1945) Thirty-second President of the USA.

We now have an explaination for why Jack is having all the cramping and more bowel movements......GvHD (Graft vs.Host diesease) was found in his gut. Below is an explanation of what it is. EBV (Epstein -Barr Virus) was also found. I'm not exactly sure what this means, all I know is that I am taking a trip down to Philly in the morning to have bloodwork done again and talk about how this will all be managed. We have been very fortunate so far with Jack's transplant, so I am hoping that this is just another little bump in the road. All the doc's had a pow-pow today to discuss the results and a plan was put in place. They have increased Jack's dose of prednisone and prograf to help. We will find out more once we sit down with the doc's.
Jack is a fighter and this won't get in his way. One thing is for sure, the increase in prednisone will help him gain his weight back and as once said by another doctor, "A bigger Jack will be a better Jack" and he has proven that statement many times. Thanks for all the prayers and keep them coming.

Sorry for the delay in blogging, I just can't understand why I am not able to access my blog while we are hospitalized. Roy couldn't figure it out either I think it's something with the internet connection at the hospital. Anyway.............

So....Thursday night August 3 into Friday morning I had a difficult time with Jack. He had about 5 bowel movements, lots of belly pain, woke up and vomitted something fierce, so I knew what was about to happen. I called down to Ginny, the nurse practioner in Transplant and she thought it would be a good idea for us to come down and be admitted. So I packed a bag got some toys for Jack and left for Philly. Once we arrived we were taken into Triage and Jack lost more weight, a total of 4 and 1/2 pounds in a week, so it meant we were doing something very wrong. Since it was Friday we all knew that it was going to be a quiet weekend but a helpful weekend. The name of the game was pain management, IV steriods to help the GVHD and nutrition and plan for a picc line on Monday if the weekend doesn't go well start him on TPN. Also it was confirmed that Jack has EBV in his gut and in his blood and that he was going to need to start treatment on Monday for that as well as get IVIG's, they didn't think his IV was going to last, so plan ahead.

Well we made it through the weekend with flying colors. Jack showed improvement with his pain as well as gaining some weight. Monday came (Oma's 81st Birthday) and the news came that the doc's were happy with Jack's progress and he wasn't going to get a picc line. Unfortunately we were not allowed to go home. The plan came in place, Monday - Rituxibum(medication for EBV that surpresses your b-cell function), Tuesday - IVIG, continue giving IV steriods and start Oral steriods on Wednesday and if everything goes well, go home Thursday. And today, Thursday August 10, we were able to go home.

Tuesday, Jack officially became +90 post transplant which now gives him the ability to be off mask. The only thing that give us is the ability to go in and out of the hopsital without a mask but we are still unable to go to places with big crowds such as the grocery store, church, amusment parks, etc....the only times we can go to any of these places are during off hours......yeah right!!!!!! Thats ok, as long as we get Jack on track and work towards being totally recovered from transplant and have a working immune system.

Thank you again for all your thoughts, knocks, crosses and prayers and keep them coming.

"Difficulties increase the nearer we approach our goal." -- Johann Wolfgang von Goethe

Roy and Christina came down to Philly last night and we figured we would be in the hospital all weekend. Christina and I stayed at the Ronald McDonald House and when we got to the hospital this morning to my surprise I was told that Jack was going home. Woo Hoo!!!!!
Turns out that the organism that was causing Jack's infection is sensitive to an oral antibiotic called Cipro and they figured why keep him on the IV anitibiotic if it will do exactly the same as the oral, so they let us go home.

So now we are home and trying to plan a little family gathering for Jack's birthday on Monday. He's already decided he want's to go out for dinner to Banzai, a Japanese Steak House that he likes so we have to find out a time that they are less crowded to be able to take him. We'll probably go for an early dinner and since it's Labor Day weekend, I'm sure they won't be so busy, but who knows, he may change his mind several times before monday,. He's very excited that we get to go to Shop Rite tomorrow to order his birthday cake and Roy and I still have to go shopping to buy him a birthday present.

Thank you all so much for your continued knocks, crosses and prayers. God Bless.

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration.
Charles Dickens (1812-1870) British novelist.

Danaisia's dad wrote this in our guestbook and I wanted to post it for everyone to keep them in your prayers. Danaisia recieved her transplant the same time as Jack and has taken a turn for the worse over the last couple of weeks, Daniel writes:

hey wuz up!how is everything hanging with jack?danaisia haven't got any better nor worst.she is on a lot of meds.for example hal & lipids (iv nutrition,vecuronium,morphine,insulin,amlodipine,magnesiumgluconate,tacrolimus,
foscarcet,vitamins,lansoprazole,cotrimoxazole,voriconazole,amilkacin,prednisolone,
linezolid,imipnem & cilastatin,caspfungin,azithromycin,and lorazepam.the iv access she has now is (L)hand arterial line(for monitor blood pressure and draw blood,(L)thigh femoral line,(L)foot iv,(R)chest port(all for medications).nasogastric tube in(L)nose for feeds,foley catheter in bladder to measure unrine output,oscillator with nitrc oxide to help with breathing,endotracheal tube-breathing tube in mouth,and 2 chest tubes on(R)side.so i'm basicily taking it day by day.also, not to forget she getting catheter in neck very soon.hang in there jack! danaisia and dad

Please, Please, Please keep them in your thoughts and prayers.
God Bless.

Hello Everyone. This is just a quick update. We had clinic today and Jack's counts are starting to come back up again. Slowly, but that's good. The doctors are starting to reduce more of his steriods and they made some adjustments in his other meds. So, he's hanging in there. Roy, Christina and myself on the other hand are all sick. It is very difficult for us to keep our distance from Jack, but it's really incredible that he hasn't gotten this.....knock on wood!!!!!!!! Let's keep praying he stays healthy from this, whatever it is we have. We're all getting ready for Candi's wedding next week. (Tina and Jack's cousin, if you didn't know) and Jack is all excited about wearing a tuxedo, he tells everyone how good he looked at his fitting. God Bless Him. And of course, Christina looks so beautiful in the dress that crazy Mussy has to almost redesign to fit her. Thanks Muss.............

Well on that note, Please remember to keep us in your prayers as well as those who you don't know.
The Gutteirez family who is at the NIH getting another opinion on Simon,
The Brown family for Jacob going towards getting a transplant,
The Smith family whose 12 year old Conner was just diagnosed with NEMO,
Rhys in Wales, UK who just contacted us who has NEMO,
Danasia is still holding on,
Little Ronnie is still in the hospital,
Matthew Brand from transplant,
Tina's boyfriend Tyler from Transplant,
Alyssa from transplant,
My Aunt Lois who was just operated on and has lung cancer and
Anyone I failed to mention who just needs to be prayed for.
God Bless you all and keep knocking, praying and crossing!!!!!

(Please go to www.caringbridge.org/in/connersmith to read more about this amazing family)