January 8, 2004
PM
Othello came home at 1 pm today!! YEAH! 
One new medication, for blood pressure. In addition to the med, we have to now monitor his BP twice a day. 
In about a week - if the Prograf does not make a positive change to the skin, we will be going to Miami. The GVHD is in his colon as well as his skin. No chances: we want it GONE! 
I wanted to say thank you to everyone for you support! Much love and hugs. 
AM
Othello is being discharged from Wolfson today! Overall he is doing well. Back to his normal energetic, silly self. 
Othello is now on a blood pressure medication, his blood pressure is rnning a little high. We have to get a BP machine/cuff today and monitor his BP twice a day from here on out. (Fun stuff) 
We are going home on increased Prograf (FK) to try and combat the GVHD. (Yes, the Graft Vs Host Disease has returned). It is indicated in skin and colon. If it does not work within a week...we will be in Miami in a week. 
I will update when we get home. 
January 7, 2004
Othello is doing quite well today. He seems to be bored with the hospital routine. He wants his floor and toys!! 
BIG NEWS: 
Othello crawled!! REALLY CRAWLED!! For the first time, last night, in his crib/cage. He took a few crawls (like steps) forward to get a toy!! WOOOHOOO!!! CRAWLING OTHELLO!!
We will be released to go home tomorrow (thursday). The doctor wants to check Othello's labs once more. 
Then we will wait for the official word from Miami. Is it GVHD returning or something else? We shall see. Then we will know if Miami will see Othello or if we can stay in Jacksonville for treatment. 
More soon..... 
January 6, 2004

The doctors are still unsure why Othello had this episode of vomitting and fever. But, the fever, diarreah, etc have subsided. 
Othello had his scope yesterday. It appeared to be all good. 
Today, Othello will go down for a CT scan. This will be to determine if there is anything the matter with the lymph system. 
We are awaiting on word about the skin biospies still. We are not sure what Othello's underlying problem is, as of yet. 
Dr. Evans said that Othello should be discharged from the hospital in about 24 hours. While we are in here for the remainder of the time, Urology and dermatology should be coming to see him. HE had appointments with them this week anyway, so no biggie!! 
I will update later this afternoon!
January 5, 2004 
PM 
Othello is down in the GE lab with Daddy and Dr. Taufiq. Othello is having his scope done. 
We have corresponded with Miami, to let them know what is going on. Our plan is to stay here in Jacksonville, until we have a diagnosis. If the outcome warrants a trip to Miami - we will head on down. If Othello can be treated here at home, we will remain in Jacksonville. 
We are thinking he had a tummy bug. He now seems a lot more energetic and very happy. Now, we have to await results from biopsies and scope. 
Update as soon as possible. 
am 
Today, Othello seem very alert and playful. He has definatly perked up from this weekend's ordeal. 
On schedule today: Scope and biopsy of the intestine. This will help determine what was/is wrong with Othello. 
Tomorrow Othello should be getting a CT scan. This will also determine if there are any lymph nodes that may been to be biopsied. 
Overall he seems fine. We are still awaiting results. The doctors are unsure of what is wrong. The skin rash issue could be one of many things..histiocytosis, PTLD <http://www.allothello.com/othellosjourney/id24.html>, viral, etc. 
I will update more this afternoon... After scope.
January 3, 2003
Are you all happy? You get daily updates again!! 
Othello has been a tad bot more active today. He has been running fevers still. Othello has also been having very watery stools. Not too pretty. Luckily he has stopped vomitting!!! YEAAAAAAAA!!!!!
We are awaiting Labs...Stool samples, Blood cultures, urine samples....have all been sent to the lab to be tested for a myriad of problems. 
So far: CDiff is negative, his H&H look good. EBV is negative.
We are still awaiting various results. I will let you all know asap. 
Monday Othello should be getting a scope in the OR. A stomach, small bowel and large bowel biospy may be in order as well. We will know more as the days progress. 
Have a great day!! I will report more tomorrow. 
January 2, 2004!! 
Happy New Year. Sorta.... 
Othello started out the year miserable. The past two days all he has been doing is sleeping, whining and the occasional vomit. Nowe are in "Clun Med". 
Today at around 5PM we had Othello admitted to Wolfson Children's hospital. He has a fever, high blood pressure, elevated heart rate and is MISERABLE!! 
They have been monitoring his vitals, taken bloodm started an IV and are pumping him full of fluids. 
As of this moment, we are awaiting lab results. We do not know what is going on yet. I will update as soon as possible. 
December 29,2003 
Still awaiting a decision from the GI and transplant doctors. We are waiting to see what, if any, course of action will be taken to get rid of the histiocytosis. 
Othello is doing well. He even stodd up a few times. All by himself. Look above at the photo if you dont beleive me!!! 
HAve a great day 
December 26, 2003 
This year has been one of many emotion and extreme situations. Othello went from lying on his "death bed" to being a spunky, energetic 18 month old. 
The year started with Othello requiring blood transfusions every few days, frequent hospital stays, and waiting for a life saving transplant. 
January-February-March....Othello laid in a hospital bed the majority of those days. He flirted with nurses, amazed friends, touched hearts.All the while, he was full of giggles and smiles, no matter what pain he felt. 
April of this year - Othello flew to Miami Florida to wait some more on the transplant list...in the hospital at Jackson Memorial. Just five days after arriving in Miami, stomach distended, liver at it's end, Othello hanging on by a thread.....Othello received his transplant. 
April 9 the 15 hour surgery started. Dr. Kato and Dr. Tzakis and their team, did what they do best. Hours passed.... 
Othello was released from the transplant center in June. Just two days before his first birthday-Othello came home. New guts and all. 
A couple of hospital stays and a couple minor setbacks. Othello's new guts rejected his body (very not common). Othello received a medication not used for this problem before-and he beat it. 
Now, Othello has gone nearly two months with NO hospital stay. This is a record for him. He has been in the hospital every month since he was born...up until now. 
Last holiday season, we spent the majority of the time, in the hospital. This year - we spent it at home, like a family. 
Thank you to eeryone..doctors, friends, family, community, nurses, and most of all: 
Thank you Othello and Thank you to Othello's donor and their family. Without their gift, Othello would not be celebrating this Christmas with us. Know that you are always in our thoughts. We will forever be appreciative. 
Happy Holidays....and a GREAT new year. 
CHRISTMAS EVE!!!December 24, 2003
Another year for Othello to enjoy the hliday season with his family, and us with him. Last year, on this day...we were released from the hospital. Luckily we are not inpatient this year at this time of the year...
Here is the word I got about tests from last week!
Word from Jacksonville about blood and skeletal survey: <<The Skeletal study looks remarkable. No signs of Histiocytosis to report. Blood tests: Excellent. H&H are right on target, Liver numbers are great. Etc.>>
Word from Miami about Skin Biopsy: <<We have recived the biopsy, the preliminary stains seem to indicate that it might be Langerhans histiocytosis versus PTLD, but we are still missing 2-3 specials stains. As soon as they are completed, we will let you know. In addition, we have sent some of the tissue for gene rearrangement studies, to r/o PTLD, but these will take 3-5 weeks to come back.>>>
This means: Othello may indeed have histiocytosis. It seems to be contained to the skin -if it is infact Histiocytosis. 
We will know more in 3-5 weeks. 
Thank you all for your concern and love! 
Merry Christmas! 
December 21, 2003
It has been a few days since I updated. Sorry all!! 
There has not been too terribly much to report. Othello STILL has the bumps. We are still waiting on test results. 
The biopsies, blood, xrays...all of it. STILL waiting for results. Hopefully the studies/tests disprove the Histiocytosis dignosis. I would LOVE to have that present for Christmas. 
Hear that SANTA?! 
Othello has overall been very pleasant. He is trying SO HARD to crawl. He can sit up really fast. He moves fromk one place to another with lightning speed (and no grae to speak of). I am worried he is going to STRANGLE himself with the feeding cord. 
Well, thank you for all being concerned and have a GREAT HOLIDAY season! 
We will update you soon as we know SOMETHING 
December 18, 2003 
Yesterday we spent the day at the children's clinic and hospital. 
Othello had another biopsy of skin taken. He does not like this one bit. They take a hole out of the skin and then send it off to the lab. Really not fun. Leaves othello with a not so pretty scar the about the size of a pencil eraser. 
He also had a LOT of Xrays done. Skeletal study. They Xrayed his head, arms, feet, spine, etc.etc.etc. too many to count really. He objected very loudly. crying, screaming and thrashing about. Eventually he became submissive. 
Is not this enought for him to already have endured? I think he hs reached his quota. I am going to start deferring any new diseases to the bad guys in the jails or something. No little kid needs to deal with this. Especially Othello!!! 
I PROTEST any new cooties coming this way! We need to picket!! ha ha. 
Well, I hope you all have a great holiday season. I will update when we know more and have a pocket of time to do so. 
December 16, 2003 
I love the long pauses between news. But, unfortunatly - the uneventful holiday season I so wished for, has come to a halt. 
Othello had skin biopsies done approx. 2 weeks ago. Today we got the results. Dr. E says that it has been determined that Othello has histiocytosis. Now, I am still researching this, so I do not have too terribly much information to give as of now. 
I can tell you that histiocytosis has NEVER (yes here we go again) been seen in a situation like Othello's. There is uncertainty about the origin of this complication for Othello. There is a bit of information I am sifting through. I have to digest it all. 
Histiocytosis is simliar to cancer (but is NOT cancer) it is usually treated as cancer though, and by the hematologists. There are varying degrees of hisiocytosis. It can go away on its own, contain itself to the skin, or attack vital organs (fatal) (and many degrees in between) 
Tomorrow we will be going to a Xray of Skeletal survey, more skin biopsies and blood work. We shoudl know more soon. 
The course of action has not yet been decided. They must first reconfirm the diagnosis, determine if it is contained to the skin (or if it has spread to organs, bone, etc), then consult with hemotology, transplant and GI. 
Please keep Othello in your thoughts! He needs the positive energy now. 
(PS I DID bring up these "bumps" a few weeks back in Miami. I was told it was nothing, not to worry, nothing needed to be done) 
December 16, 2003
othello sleeps, peacefully. at 11 pm, daddy walks in to empty his ostomy bag. moments later mommy hears: "i need help". mommy rushes into the room, just in time to see daddy spill poopy ALL OVER the baby's ENTIRE body!!!!! 
11 at night-othello has to get up, take a bath, get changed, and lay in mommy and daddy's bed. (his is being sterilized now) 
ahh the life!
things are well over all. looking good for the punkin. Friday he has some routine lab work to do. 
His feeds will decrease to 16 hours a day. YEAAAA!! Making progress!!!!
hope you are all having a great holiday season!!!! 
December 15, 2003
Othello went to have Christmas photos done Sunday. This was really neat. Seeing as that Othello did not want to look at the camera. Sebastian was more interested in worrying about Othello . 
Othello seems to be doing very well. Health wise he is at a very good point. He has managed to not have any rejection sicne transplant and no major illnesses since the GVHD. 
Hopefully he will continue. 
This Saturday we were very pleased with the Benefit Dinner. The place looked very nice (Thank you Sharon, Ben, Keri, Xakk) (and Teri, Charlie, Nina, John, Mom, Gram, Mandy) and everyone else who came and helped out. An extra special thanks to Hetal Gandhi from Channel 4 and Maureen Popke from Translife (in Orlando). 
We hope you all had fun. We missed a lot of you too! Hopefully we will get to see more of you the next time. (Othello came and he WAVED as he entered the room) 
More soon...
December 16, 2003
othello sleeps, peacefully. at 11 pm, daddy walks in to empty his ostomy bag. moments later mommy hears: "i need help". mommy rushes into the room, just in time to see daddy spill poopy ALL OVER the baby's ENTIRE body!!!!! 
11 at night-othello has to get up, take a bath, get changed, and lay in mommy and daddy's bed. (his is being sterilized now) 
ahh the life!
things are well over all. looking good for the punkin. Friday he has some routine lab work to do. 
His feeds will decrease to 16 hours a day. YEAAAA!! Making progress!!!!
hope you are all having a great holiday season!!!! 
December 15, 2003
Othello went to have Christmas photos done Sunday. This was really neat. Seeing as that Othello did not want to look at the camera. Sebastian was more interested in worrying about Othello . 
Othello seems to be doing very well. Health wise he is at a very good point. He has managed to not have any rejection sicne transplant and no major illnesses since the GVHD. 
Hopefully he will continue. 
This Saturday we were very pleased with the Benefit Dinner. The place looked very nice (Thank you Sharon, Ben, Keri, Xakk) (and Teri, Charlie, Nina, John, Mom, Gram, Mandy) and everyone else who came and helped out. An extra special thanks to Hetal Gandhi from Channel 4 and Maureen Popke from Translife (in Orlando). 
We hope you all had fun. We missed a lot of you too! Hopefully we will get to see more of you the next time. (Othello came and he WAVED as he entered the room) 
More soon...
December 11, 2003 
Othello did good yesterday. He was chipper and playful. 
When the Occupational Therapist came to visit, Othello got to bounce on a BIG ball. Kind of like a YOGA ball. I think he needs one of those! He LOVED it. He cackled and grinned from ear to ear! 
We have a couple short days until the dinner. I hope you all can make it. We should have a great time. Thank you to everyone who has been helping out with the event!! We hope it will be a huge success! 
Talk to you all soon!!! 
December 10, 2003
Drum sticks are Othello's friend. He loves to wave them in the air and bonk himself on the head. He enjoys gnawing on the end of them too. (Now before you yell at me for letting him chew on them - the speech therapist WANTS him to chew on his toys. It is actually GOOD for him. <gven his circmstances>)
This morning - just as every morning, I had to give Othello a new ostomy bag. He seems to love pulling them off at night. Luckily, there was not poo in the bed this time. I am not sure how he managed NOT to poo everywhere, but he didnt. For that - I am thankful. 
Last week, Othello went to dermatology. The Dr. took a skin biopsy and stitched the tiny hole up. The spot really didnt NEED a stitch, but the Dr insisted. So, yesterday, Othello decided the Dr was WRONG and removed the little blue stitch himself. No bleeding, no crying and no stitch. For the record OTHELLO DID IT!!!
We have just a couple of days until the benefit dinner. If you would like to go please let us know ASAP. You can purchase your ticket at the door if you would like. We have a some seats left! It will be MUCH fun! Plus - you get to see Othello. No touching though! 
Hugs and Stuff from Othello!! 
December 8, 2003
Othello has been doing very well.
He met his new speech therapist today. She seems to be nice too. I hope that Othello can make some more progress with her help too. 
Tomorrow we will see the physical therapist. He works very well with her. He is coming along nicely. 
Well, that is all. Nothing much to report. 
Saturday is the benefit dinner. I hope you all enjoy yourselves!! If you have not gotten your tickets yet, please make sure to email us!! 
December 6, 2003
I love the weeks when there is not much to report. I was asked to update though. 
So, I will give you guys a little fluff n stuff. 
Othello is STILL trying to crawl. He is working on it. Maybe he will do it on Christmas, as a present?! He DID have his first tooth come in on my birthday this past January. That was sweet. 
Monday, Othello will meet his new Speech Therapist. The last one, Ms. Kim, went on to a new and exciting job. We are still working hard on Othello's eating. It is VERY difficult, since he pushes the food awy and spits it out a lot. It takes over an hour to feed him. 
Tuesday and Wednesday will be Othello's normal OT and PT days. He is doing so well....Good Othello.
Friday, Othello goes to Urology. They will be doing ultra sounds of his left kidney to check the function. Othello was born with hydronephrosis. This works it self out eventually. Basically, it is no big deal. 
Hmmm. and Saturday is the Dinner Event. Everyone who wants to come, call 379-1320 or email othello@allothello.com !! Othello will be making an appearance!!! 
December 4, 2003 
Today we recieved a call from Miami about Othello's recent intestinal biopsy results. It was a very nice call. Katherine said that the biopsies show "No evidence of any graft rejection (EVER)." 
I was HAPPYYYYY. We knew this from each of the previous scope. Still it is very nice to hear that 8 months post-transplant NO GRAFT REJECTION has occured. So very pleasant. I hope and pray that this trend continues. 
I also asked about Ostomy closure. (the ostomy is the piece of intestine that they pull out of his abdomen, where Othello poops into a bag from. This enables scopes to be done easier, and more frequently.) We are requesting that Othello's ileostomy be closed in April. (One year post transplant w/ no rejection) 
Othello - YOU CAN DO IT!!!!! 
Thank you all again. That is all for today!! 
December 3, 2003 
Physical and Occupational therapy went okay today. Othello was a bit tired and cranky. Maybe because he stayed awake half the night. (Who knows) 
Othello also saw the dermatologist at Nemours. She looked at the bumps on his legs and arms. She then took a biopsy of the site. We have a return appointment in two weeks. That is when we will know the results of the biopsy. 
Othello is doing quite well overall. He has a touch of a cold still. But, nothing major. 
Thank you all for following the little guy. 
Dont forget, 10 days until the benefit dinner!!! YEAH!!!! HAve you gotten your tickets yet?!!?!?