March 2006 Archives
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.
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.
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.
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.
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'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.
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.
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, 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).
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!!!!!
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!
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!!!!!!
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.
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.
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.
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!!!
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.
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.
FYIAll 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 # 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.
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
Well, today is the day before we go to Philly. Tomorrow we're leaving at 9:00am. No turning back now. Charlotte is running around the house like a mad woman, thinking that we can't forget anything. We're only 100 miles away I keep telling her. I will be traveling back and forth every couple of days. But anyway, Jack, Tina and I all got haircuts. We figured that Jack is going to loose his hair from the Chemo so why not buzz his hair off so it's less of an issue. He looks great without his hair.
We have told Jack that he is going in the hospital to hopefully cure his NEMO. Charlotte and I are nervous in a positive way. Jack will come through this with flying colors. Please say a prayer and keep your fingers crossed for Jack. 
We haven't written anything about this yet and we now decided to let you all in. Some of you already know, but most of you don't. Back in November we were contacted by a company called True Entertainment in NY about having a documentary made on Jack's diagnosis. The show is called "Mystery Diagnosis" and it's aired on the Discovery Health Channel. Since then we've had several tapings for the show. In December we went to "Silver Cup Studio's" in NY for the initial interviews. We had a really long day, both Roy and I had 3 hour interviews as well as Christina having a short interview and our good friend Julie (bubbles) being interviewed. After that in February, we met them down in Philadelphia to have a taping done in "Day Medicine" where Jack recieves his IVIG's as well as taping with Dr. Orange. The next tapings were done last week here at home for the playtime with the kids as well as giving Jack his med's and our daily routine. And, finally, we finished up yesterday with Dr. Levy at St. Barnabas Hospital. We were told that the show should be aired on June 12. I will blog again when we get closer to the day and time the show will be aired. I give a lot of credit to actors, it's a lot of work. It can be grueling at times. We are very excited about the show to be able to get awareness about the NEMO diagnosis as well as tell everyone what we've gone through to get it. The show will not be long. They do 3 diagnosis for each "Mystery Diagnosis" hour, so for the many hours of taping it will be edited to about 15-18 minutes. Watch for the repeats they are showing now to get an idea of what it's all about.
Transplant Info
On another note, we are starting to prepare for Jack getting admitted on Tuesday March 14th. We spent the day in Philly on Tuesday for Jack to get his pre admitting tests and we will be going back on Monday the 13th to get a couple more tests done and if all is well we will proceed on Tuesday. Our nerves are starting to rise and we are starting to get sad about leaving Christina but she will probably be coming down on the weekends or Roy and I will be trading off. The low down of the transplant will be as follows:
Tuesday 3/14/06 Broviac Placement
Wednesday 3/15/06 Chemo
Thursday 3/16/06 Chemo
Friday 3/17/06 Chemo
Saturday 3/18/06 Chemo
Sunday 3/19/06 Rest
Monday 3/20/06 Chemo
Tuesday 3/21/06 Chemo
Wednesday 3/22/06 Chemo
Thursday 3/23/06 Chemo
Friday 3/24/06 Chemo
Saturday 3/25/06 Bone Marrow Transplant
Then we watch, wait and pray for engraphment to take place which could take up to 2 weeks for more.
Please keep us all in your prayers.
Roy and I will try our best to keep everyone updated through this blog. So make sure you check to see what is going on. Roy and I will be able to reached via cell phone or through our personal email address or you can email through the gmail address on this website. Thank you, once again, for your contast thoughts and prayers.
