November 2006 Archives
We hope everyone had a very Happy Thanksgiving!!! Ours was very quiet and we were very happy about that, especially after being in the hopsital over the last 3 weeks we weren't looking to do anything but relax.
We took Jack to clinic today. Jack was supposed to get IVIG's and Dr. Bunin realized that next week Jack is due for Pantamadine (antibiotic require for 1 year after transplant) and cut him a break and decided to have Jack get both IVIG's and Pantamadine next week. Jack ended up just getting a blood draw and we hung around for a while until those results came back. The results came back and Dr. Bunin herself handed us the lab results and said "Now these are better counts" and "now we know how much Jack's body doesn't like infection". We will now know that Jack is brewing something by his counts, so we pray from here on out that his counts keep going up and he doesn't get another infection. Now all we have to do is get his nutrition better.
Last Tuesday, while still in the hospital, Dr. Bunin and I were talking about what we are going to do with Jack's nutrition. We don't want to start crazy feeds again, so we had started him us with just 6 hours of night feeds, but that still isn't enough to sustain his weight never the less make him gain and as of right now we don't want to put in another port or central line for the risk of infection again, so what do we do? Well, I joked and said, is there a magic pill? Not long after that Dr. Bunin came back in to our room and told me about this medication that is an appetite stimulant that she normally doesn't prescribe, but desperate situations require desperate measures, so as a last resort before putting another central line in and doing IV nutrition, she had us start this medication called "Magace". It takes about 2 weeks for the medication to kick in, but it's worth the shot. So far Jack hasn't gained much weight but his hasn't lost either. I'm constantly in the kitchen making him food, so I am hoping that he will soon start eating better and gaining weight on his own. The theory is that Jack's counts as well as anything else that needs to recover from transplant will get better with better nutrition and as a doctor once told us "A bigger Jack will be a better Jack", so we are praying this medication will work.
I'm not sure if I ever mentioned this but not only is Jack 100% donor he has also become the donor. What does this mean? It means, Jack went into transplant with his own DNA from us and B positive blood type, he is now the donor's DNA and O positive blood type and we don't know if his DNA is male or female yet. Isn't that freaky? So Jack is a part of that wonderful person who not only donated bone marrow in March but also donated Stem Cells in May. This person is a saint. We won't be able to find out who the donor is until the spring but we can't wait to find out and thank them ourselves.
Please remember that there are so many people who need a matching donor. There are children with NEMO that I am in contact with who can't have their transplant because they don't have a matching sibling donor or there isn't a match in the donor registry. You could be that match. Please consider becoming part of the National Bone Marrow registry. You could give someone life, like the donor gave to Jack.
God of consolation, even were we to feel nothing of your presence, you are there. You presence is invisible, but your Holy Spirit is always within us.
Today's quote from my paster - Rev. Jeff Markay
We're going home today! We have so much to be thankful for...most of all...YOU!....for always remembering and continuing to keep us in your prayers. Thank You and God Bless!
Happy 30th Birthday Shannon!
It's been a very busy weekend. Thursday night Roy and Christina came down and she and I stayed at the Ronald McDonald House while Roy and Jack did some boy bonding at the hospital.
Friday morning we were told that Jack's blood draw grew out a positive culture and they were going to remove his port. His port was taken out and everything went well so Christina and I decided to go to the store for a couple of things that we needed. On our way out I called Tammy Lausten (Tyler's mom) and we changed our plans and went to their house for a little while. This was the first time Christina and Tyler got see each other since the summer (and they are still an item). We stayed for a couple of hours and set up for them to have another play date on Sunday.
Otherwise Jack is doing well. Since his port came out on Friday his counts have been coming back up. Now we are faced with the nutrition issue again and it's looking like we'll be planning to get admitted again after Thanksgiving for Jack to get another central line and get some IV nutrition. As long as Jack behaves we should be going home Wednesday night. So, please keep knocking, crossing and praying.
I don't know if anyone noticed, but on the front page of our website we have added Amazon.com. If anyone is an online shopper please consider buying through our website. A small percentage will be donated to Jack from your purchase. Especially during this holiday season you may find some great savings.
Thank you Andres for setting that all up for us.
And Tammy, Thank you so much for keeping Tina all day on Sunday. I know she had a great time and she can't wait to come over again.
Can you believe November is half over already.............and I have only spent 2 days home during the last two weeks. Jack is back in the hospital again. At least we got to spend the weekend home.
Roy and I did well with the TPN at home, followed all the directions and necessary precautions but Jack seemed to be really retaining a lot of fluid so after speaking with the Dr. Aplenc on Sunday he thought it would be a good idea if we came to clinic on Monday instead of Tuesday so they could take a look at Jack. He really looks great and is eating like a champ but once in clinic and after the nurse drew his blood from his line he started to shiver, shortly thereafter he spiked a temperature. We were told that they were going to admit us and start IV antibiotics and we have to wait out the 24 hours for blood culture results. Well you know Jack and it didn't even take 24 hours for his blood culture to grow out bacteria and the resident said he's growing out some really nasty bacteria at that.
Jack is a tough kid and a lot tougher then I am and he will get through this as he always does. We are hoping to only be here til the end of the week but that will all depend on they identification of the bacteria and what antibiotic is best used for treating it. I told them already that I want to be home for Thanksgiving so they have to get Jack all fixed up by then.
Thank you again for all the prayers. God Bless you all!
When all else fails......
We were discharged today at 1:00pm and after 2 hours and 45 minutes of driving in traffic we finally made it home!!!!! We came home to a phone call from Anne the nurse practioner with great news of Jack still being 100% donor. Even though his counts have been low and it's a scarey thing we have the good news of knowing he isn't loosing his graft. Thank You God and Thank you all for the knocks, crosses and prayers. They all have been answered. We still need some prayers to get us through. Jack came home with his port accessed and we are starting TPN (IV nutrition) at home tonight. We are waiting on the home care nurse to arrive to give us the final details and show us what needs to be done and of course done correctly to protect Jack from infection. This is the one thing I said I never wanted to do but Jack responded so well in a weeks time gaining 5 pounds that it's really too good of a thing to not take advantage of at home. We are looking forward to having a very healthy Jack.
Christina and Jack have already gotten into their normal routine and Christina is running around with a happy meal box on her head and a cape on her back yelling "Super Baby" and cracking Jack up. Let's hope they don't start fighting yet!!!!!
Thank you all again for keeping us in your prayers. We're settling in for a nice family weekend.
God Bless
After 10 days of being in the hospital and a port placed, Jack has gained 2 pounds!!!!! He came here weighing 12.7kg/27.9lbs and he now weighs 14.0kg/30.8lbs. What a difference the IV nutrition has made. Right now we're watching Jack's leg, since yesterday his left leg has presented with some redness and throwing off some heat and of course the first thing we think of is cellulitis and we've been waiting for a temperature to spike and so far no temp. Today his leg is starting to be less red and he still hasn't had a temperature higher then 99 and they won't treat unless he spikes over 101. So keep your fingers crossed, knocking on wood and praying that he doesn't spike a temp.
We've had a little scare over the last couple of day with his counts. They really dropped into the toilet and he hasn't shown any reason for his counts to drop, so the possibility of his fighting this infection in his leg could be why his counts are low. They are starting to get a little better and just to make sure the doctors sent some bloodwork out for engraphment studies to make sure he is still 100% donor. Again, cross, knock and pray!!!!!!!!
Otherwise, Jack is such a trip, his bed tray is constantly filled with food, he eats non-stop and his gut seems to be tolerating the food. We have the first room as you come on the the BMT floor and he likes to have his door wide open so he can see everyone walking on and off the floor. Tracey, Denny and Kim (aka the Kookadoos) come by and talk loud and play music and dance.
I sent out that mass email last week when we got admitted because of the website being down and I was so happy to hear from so many of my friends. Thank you all so much for responding back to me and letting me know you are keeping us in your prayers.
To my NEMO families who I haven't written to in a while, please forgive me for not having been in contact, for some reason I am having difficulties with sending out emails from my comcast email address here in the hospital so I hope all is well with you.
Please keep Jacob Treebeard and Simon in your thoughts and prayers as they have started their way through transplant. As well as our friend Alyssa who has been here for the past month and just came out of the PICU.
The following quotes/passage were sent to me via email this week and I wanted to share them with you.
Sent by a great friend
As we grow up, we learn that even the one person that wasn't supposed to ever let you down probably will. You will have your heart broken probably more than once and it's harder every time. You'll break hearts too, so remember how it felt when yours was broken. You'll fight with your best friend. You'll blame a new love for things an old one did. You'll cry because time is passing too fast, and you'll eventually lose someone you love. So take too many pictures, laugh too much, and love like you've never been hurt because every sixty seconds you spend upset is a minute of happiness you'll never get back.
Don't be afraid that your life will end, be afraid that it will never begin.
~anonymous~
Sent to me by my pastor (Rev. Jeff Markay)
"Nothing that is worth doing can be achieved in our lifetime; therefore, we must be saved by hope. Nothing which is true, or beautiful, or good, makes complete sense in any immediate context of history; therefore, we must be saved by faith. Nothing we do, however virtuous, could be accomplished alone; therefore, we must be saved by love. No virtuous act is quite as virtuous from the standpoint of our friend or foe as it is from our own standpoint; therefore, we must be saved by the final form of love, which is forgiveness."
a passage from the theologian Reinhold Niebuhr's work, The Irony of American History
This past Sunday, November 5, 2006 we were able to experience a wonderful group of motorcyclists from the ABATE motorcycle organization. They sponsor this fantastic run of approximately 70,000 cyclist who participate in bringing toys for the children to be given out for Christmas. Please visit their website to see all the wonderful events and other fantastic things this group does. http://www.delawarevalleyabate.org/
Jack and Bonnie looking in awe of all the motorcycles and "leather" there was.
The wonderful group of cyclist who came up to the oncology floor and handed out t-shirts and gift bads with treats in it and Jack showed his gratitude to this bunch by giving each of them one of his "Found NEMO-Finding Cure" www.cure4jack.org wristbands. Thank You ABATE!
And, the highlight of the event, Santa Claus leading the run!
Hello everyone!!!!! Happy Halloween!!!!!
It's been a very busy, hectic couple of weeks. I will try and make this as brief as possible.
Two weeks ago on a Saturday, Jack had a very bad night. I changed approximately 12-15 diapers overnight resulting in Jack loosing 3 pounds and having to go to St. Barnabas Medical Center to get hydrated on Sunday. Forunately the doctors at St. Barabas were constantly talking to the doc's in Philly and it was decided that all he needed was fluid and they sent us home. We had to follow up with Philly the next day (monday). So I trucked down to Philly and believe it or not his counts were good and so were his electrolytes but his nutrition wasn't. Dr. Bunin decided to give us a chance to work on his nutrition at home and do a 3 day diary of his food intake. We actually got Jack to gain back a pound but it still isn't enough. We had to return 3 days later on a Thursday (last week) and it was decided that if he doesn't gain over the weekend that Dr. Bunin was going to admit him Wednesday after Halloween.
Well, yesterday came (monday 10/30) and I went to clinic and even though Jack still didn't loose any weight, he still wasn't gaining and Roy and I decided that it wouldn't do Jack any good to sit and wait until wednesday and just have him admitted and work on getting a central line of some sort put in and start him on some TPN. I woke up this morning feeling very depressed that I wasn't home with Christina for Halloween and I was going to miss her parade at school so I told Dr. Bunin I wanted to go home. There was nothing planned but hydration for Jack so she actually gave us a 6 hour pass. I left the hospital at noon, got home in time to go to school and see Christina and Jack wanted to walk in the parade with his friends and Mr. Ron, the class aid. He was so happy to partake. He walked around the school circle 2 times and that was a lot for him. Once the parade was done we took Christina out of school and brought them home to trick-or-treat at our neighbors and then Roy hit the road with Jack at 3:45 to get him back to the hospital by 6pm.
Tomorrow (11/1) will be the big day for Jack to get a port put in. I will get Christina off to school and I will get there shortly after the surgery is finished. Then once the port is placed TPN (IV nutrition) will be started and this will give Jack's gut a chance to rest and Roy and I have vowed that this will be our last long hospital stay.......Dr. Bunin expects us to be inpatient for approximately 2-3 weeks and since Jack will have the port and if he needs to continue with IV nutrition then she is thinking we could do it at home. "We'll See!" Jack has done so well in the past with TPN that I know he will do well again.
In between all of this I was able to volunteer again for the National Foundation For Ectodermal Displaysia 6th Annual Halloween Bash, their biggest fundraiser for the Year on Thursday (10/26) in New York. What a fantastic evening.
I can't thank you all enough for the prayers in the past, they have certainly been answered. The power of prayer has brought Jack through!!!!! Please remember us again.
Our little "Witch" and "Power Ranger"
Trick or Treating
Walking with Mr. Ron at the Halloween Parade at School
