Recently in Bone Marrow Transplant Category

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)

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.

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.

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

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.

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.

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

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).

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

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!!!