Allyson is back in the hospital.  Her hemoglobin has been dropping over the last few weeks, but this week it took a bigger drop.  She has developed anti-bodies against her red cells.  These anti-bodies are eating away her red cells faster then her bone marrow can make them.  They have started her on steroids every 6 hours.  The steroids should kill out the anti-bodies and allow her bone marrow to produce the red blood cells at a normal rate instead of working the overtime that it has been working trying to keep up with the anti-bodies.  Last night her hemo had dropped to 6.5 so even though they were wanting the give the steroids a change to work, they gave her a blood transfusion since her hemo had dropped more. 
They will be running another anti-bodies test this afternoon which will give us an idea of how well the steroids are working. 
Last Friday, Allyson did have to get a NG tube (feeding tube in her nose) because she has completely quit eating.  They have determined that she has a sensory disorder, which is not uncommon in kids who have had chemo/radiation and long hospital stays.  Speach therapy has started working with her on this.  As soon as she starts eating again, the tube can come out. 
They also believe she has a skin sensory disorder which OT will start working with her on.  She has developed a major issue with having any type of cream put on her skin.  Over the past few months this has gotten worse.  When I look back, I can see that this has been happening for a while, but since it is not the most common occurance, it was hard to know that it was an issue.  She went from wearing her PJ's that fit to not wanting to wear anything but my t-shirts a while back.  She started with throughing small fits about putting her prescription lotions on to throughing huge fits.  We will see how well she does with the new therapies.
Her hemo did come up to 12.6 after the blood and three doses of steroids, now it is a waiting came to see what the anti-bodies do.
Thank you for all the Prayers and support!!
Lots of Love,
Liz and Allyson

Wow, I can not believe we have been home since July 2nd.  We have stayed extremely busy just trying to keep up with everything that has to be done.  We are only home 5 days a week and in Cincinnati the other two.  Allyson has been having a few issue but overall doing good.
- She does not like the fact that having visitors is no different then when we were in Cincinnati.  She started getting really depressed about this and showing signs on this in behavioral issues.  Because of this Dr. Mehta has decided to let her have one friend come over and visit.  Most of you can guess who her choice was, Emily Grace, her best friend.  Of course Emily Grace has strict procedures that have to be followed before she can come over and while she is here and Emily Grace has done an awesome job, not to mention that Allyson has enjoyed it more then anyone could image.
- Allyson has been having issue's eating (or better stated, not eating)  Last week she lost 2.9 lbs in one week.  They started talking about another feeding tube if she did not start taking in more calories.  This week she only lost .8 kilo's so they decided to not  do the feeding tube, but continue to track all that she takes in.  They expect her to loose weight since she is off the steriods and anti-rejection medication, but they do not want her to loose it too fast.
-Her skin is still extremely dry, but the redness has decreased.  They are keeping a close eye on this to make sure it is not GVHD, but still her skin recovering from the allergic reactions she has had. 
-Her CMV level has stayed NEGATIVE!!!!!!!!!!!!!!!  She has now been taken off the Foscarnet and all night fluids and it has remained negative since this happened two weeks ago!!!  Can not tell you how happy this has made me, considering her CMV level is what kept her in Cincinnati for so long.  If her CMV level continues to stay negative, then she will be taken off her Cytagam which is one of the infusions that we go to Cincinnati for.  This will mean that we will only have to go to Cincinnati for one full day a week instead of two days a week. 
- They did an immune study again on the 24th of July and there is no change in her immune system.  They will do another immune study in three months.
This past week we lost a very dear Fanconi friend, six year old Ashlynn.  She was such a strong, beautiful little angel.  Please keep her parents and her family in your prayers. 

Love and Prayers,
Liz and Allyson

Wow!  The last week has been a roller coaster.  Of course it all started with her fever on the 25th and Allyson's helicopter ride to Cincinnati Childrens.  Then small problems started popping up everywhere.  Allyson's rash that we went home with on the 24th looked much much better on the 26th.  I was so relieved, all I could think was that her itching was soon to be over.  Well Sunday morning when she woke up, she was flaming red from the top of her head to the soles of her feet!  The doctors came in to examine her and called in dermitology.  They determined that she was having a medicine reaction.  They had to review her meds and they believed she was having a reaction the to Zosin (anti-biotic they put her on for her fever).  They stopped the Zosin, but the damage was already done.  The next several days she had terrible itching spells.  She would cry and cry and tell me she itched so bad and that her skin was on fire.  We went two days trying to find a medication that would take care of the itching, but nothing worked.  She would just have to wait for the reaction to stop.  I felt so helpless!!  There was nothing anyone could do to take away the itching.  The best way the meds helped were making her Then on Sunday, her hemoglobin continued to drop and she had to get a blood transfusion.  She has not had a transfusion since October 22, 2009.  It's fustrating that after 269 days, she is still having issue's with her blood counts dropping.  Then on Tuesday night, she started having high blood pressures.  They had to give her medication to bring her blood pressure down.  Then on Wednesday she received G-CSF for her ANC dropping, 
All of her cultures came back negative except for her first urine sample which showed some bacteria.  This could have been the cause of her fever, but there is no way to know.
She was discharged Wednesday and we headed back to the Ronald mcDonald House.  Then to the doctor today and she released us to try going home again.  We got home at 6:30 and have worked all night.  Still have tons of stuff put away.
Hope you all have a Wonderful July 4th Weekend!!

Lots of Love
Liz and Allyson

Oh my goodness!!  Where do I start?

6/24/10 - We got up early for our day hospital appointment at 7:30am.  Our appointment where we would find out if we were going home that afternoon or not.  A week and a half earlier Allyson had a reaction to a med that caused a red hive like rash all over her body (that Dermitalogy said is a common reaction and can last 4 to 6 weeks).  Dr. Mehta had not seen the rash yet and would not make her decision until she had seen it.  When she came in, she examined Allyson and we began our lengthy discussion regarding the rash.  Meantime, Allyson has crawled out of bed standing at Dr. Mehta's feet asking her over and over if we could go home.  Dr. Mehta told her that we could on a few conditions: 1- that she would allow her Momma to put her ointment on her 3 times a day and not try to wipe it off, 2 - that she not go out in the sun at all, 3 - that if we go for a drive, she wears her sunscreen (because the sunlight coming in through the window is no different then being in the sun) and that she wears her sunglasses,  4 - no public places or her friends to visit.  Allyson told her that she promised she would follow all the rules!  Oh - I wish you could have seen her excitement.  She was bouncing off the walls and then got really mad that we were not walking out of the room and leaving right then and there.  She kept saying - - come on - -we have to get on the road!!!  Meanwhile, Dr. Mehta and I continued to review all the rules for home (which is a ton) and Allyson did not like that at all (she just wanted to go!!!)
We left the hospital around two and headed back to the Ronald McDonald House.  Mom and Dad had been working all morning getting the rest of the items packed and the room cleaned.  Because there was so much to do, they were not finished yet.  I left Allyson with them and headed back to the hospital to pick up all of Allyson prescriptions.  Came back, ate lunch and helped Mom and Dad get everything finished packing and loaded into the truck and van.  (Phillip and Tracy had come up on Sunday and took home a truck load, then we filled both vehicles - we had way too much stuff!!!).  Did our check out and got on the road about 5:30 eastern, 4:30 central).   During our entire packing and loading time, Allyson was in a very foul mood because we were not on the road yet, she just wanted me to hold her and hurry up (which can not be done at the same time).  By the time we got started, she was very excited by tired at the same time.  She watched a movie, then we jammed to Hannah Montana.  Then she asked me to turn off the radio (which is very unusual for her) and she finally fell alseep about an hour from the house.

Our Home Coming!!!  WOW!!!  Is all I can say.  We pulled onto our street, rounded the corner and you would not believe the site we saw!  The street was lined with cars and lining the street were tons of our friends and family holding signs, ballons and shouting Welcome Home Allyson!!!  I was an emotional mess.  I knew something was going on, but had no clue it was this.  I will have to say that everyone did a great job staying far far away from Allyson.   I can not tell you enough how much the Home Coming Event meant to us.  We are so blessed to have all of you in our lives!! 

Our home healt nurse got to the house around 9:30 and trained me on the pumps that they use for Allyson's meds and she left about 10:30.  We did our nightly meds and headed to bed.  Allyson did AWESOME sleeping in her own room and her own bed!!  We both had a wonderful nights sleep. 

6/25/10 - I got up and got a few things done around the house.  Went to get her up a few minutes before 10 (nurse was coming out to evaluate her).  When I woke her up her cheeks were red and her skin very hot!  Took her temperature and saw the devestating number!  101.9!!!  UGH!!  All I could think was this is not fair to Allyson!!  She has not been home in 9 months and now this!!!  Suite cases were not unpacked yet, so I threw a few things into them and off the the ER we went.  Since I am so uncomfortable with Owensboro's ER, Cincinnati set it all up for us to go to St. Mary's in Evansville.  The standard procedure for a fever is automatic admit for the duration of the fever and 48 hours post fever.  Siince we do not have a Childrens Hospital in our area I was told we would automatically go back to Cincinnati for any issues at all.  So I knew when I took her temperature that we would be heading back to Cincinnati.  (Her not feeling good and the fever explained her mood from the day before.  If I had not been so excited about coming home, I would have realized that she was acting as she always does when she does not feel well.)
St. Mary's ER staff did an excellent job.  After hearing all the horror stories from other families and their trips to the local hospitals in their home towns, I was scared to see how they handled things.  There are a few things they did that I did not completely agree with, but nothing that was so terrible I was scared for Allyon's safety.  She had a wonderful Nurse named Tara who took great care of her.  I will be contacting their Head of ER to let them know how well they took care of Allyson and how well they communicated with Cincinnati.  Needless to say, this trip got Allyson a trip to Cincinnati in a Helicopter!!!  WHICH SHE LOVED!!!!  Since their helicopter was out for maintance I could not fly with her (the loner copter did not have the seating.)  I was devestated and an emotional mess.  Not only was I leaving my baby girl, but she was flying on a Helicopter.  Needless to say, I made it to Cincinnati in much less time then the trip should have taken and talked to them constantly on my way there.  They assured me that she was there and doing great.
When I got there she said "Oh Momma, I missed you" and I got big hugs and kisses.  She gave me great details of her flight and how great her medic and nurse were.  Including how they landed half way becuase of a problem with the chopper.  I am so glad I did not find that out on the way.  I was upset enough over her having the fever and not being able to be there with her.  She loved it and you can tell that she was not scared at all.  Her favorite part was taking off and she said "I loved going up up and away, and I got to do it twice!!!"  They gave her a helicopter pin and a teddy bear.  She informed me and Dr. Phillip that she was starting a collection of helicopter pins and that everytime she goes on a helicopter she will get another one and that she will have a whole bunch!!!  Oh my gosh!!  I told her that this will be her only copter pin!!  She was allotted one ride, and she has now used it!!!
She has been fever free since we have arrive!  Getting high dose antibiotics and being monitored.  So far, none of the cultures have shown anything (which is great, but why did she get the fever).  She does act like she does not feel the best, the there is a big possibility that she has a viral infection.  I do not know what the game plan is from here and will not find out until Monday.  They are following standard procedures for now.
We were very lucky to get our room back at the Ronald McDonald House since we were gone for less then 24 hours and they did not have another BMT family on the list waiting for a BMT suite.
I will try to keep you all up to date on what is going on.  Thank you so much for all the prayers and support!
Lots of Love,
Liz and Allyson

Great news today . . . We were told a tenative GO HOME DATE of June 24, 2010!!!  I was so trilled, excited, scared, worried, happy, all at the same time.  So many emotions running through me at once.  Once her Doctor and Nurse coordinator left the room all I could do was cry.  I made my every Friday calls and just cried as I shared the news.  Allyson's Benedryl had already kicked (it makes her extremely grumpy) and all she wanted was her favorite Child Life person to come play with her.  After she took a nap, she started asking all kinds of questions about what is going to happen once we get home.  She is cautiously excited would be the best way to put it.  She completely understands that if her CMV goes up, then our go home date will be postponed. 
Please pray for Allyson to continue to progress more and more everyday, for her CMV level to remain at zero, for her engraftment to reach 100% and remain at 100%, for her CBC levels to remain in normal levels.
As long as Allyson remains on the path she is on, our Go Home Date will remain 6/24/10!!!
Our Nurse coordinator is getting everything ready at home.  Setting up Home Health Care, Emergency Room care at St. Mary's, and an Emergency Hemotologist at St. Mary's. 
Once we get home, we will return to Cincinnati every Thursday and Friday for treatments.  We will do this for a few months and then her appointments will switch to by-weekly, then monthly.
Allyson will be in isolation when we get home.  She will not be allowed to go anywhere, but our house.  She can play outside, but only if the sun has gone down or if she has on long sleeves, pants, hat, sunglasses and sunscreen on even where her clothes cover and do  not cover.  Allyson says she is not going to sweat so she just will not go outside.  Since she has had GVHD on her skin, it is very important that her skin stay completely protected.  The slightest bit of sun exposure can cause the GVHD to flare up. 
Our ventilation system has been cleaned at home and our house has been treated by a Pest Control Company, both at least two months before our return.  Now the major list making starts, list of all other things that have to be done before we can return.  Tons of things to do and twenty days to do them.  Then all the packing here!
Just knowing that the date has been set is such a relief!  I won't lie, I will be extremely dissappointed if the date gets pushed back, but I know it is a possibility.

Thank you for all the wonderful support and prayers!
Lots of Love,
Liz and Allyson