May 2006 Archives

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.

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.

TAYLOR HICKS - SOUL PATROL - Congratulations Taylor

The most exciting part of the whole show was when "Prince" performed - at that point I didn't care who was going to win, I got to see my man.....I guess I'll never get out of the '80's!!!!! Hey Denise, did you see it?????

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.

"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.

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!!!!).

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??????????

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.

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

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

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

And Brushing his teeth

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

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/

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.

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"

After those 2 masked men disappeared this morning and Jack returned, we were visited by "Cookie Monster" and "SUPER Grover"

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..........