Day 33 and 34: Happy Hat Day

Hey everyone!

Just wanted to say hello! Thank you for all the messages you have been sending to me. I am feeling good and happy about my marrow (that is, Austin's marrow). Yesterday my brothers and Grandma visited. We celebrated Jack's birthday for the 4th time. The best part of the day was playing soccer on the field across the street. It was fun to run around with my brothers.

Thanks to Ms. Dianna for my funny Goofy hat. My family had fun trying on all the different hats you have sent. It was hilarious!

Today is just a lazy Sunday. I will go back to the doctor on Tuesday. Hope you have a nice day.

AJ

PS - Please say a prayer for my little friend Lyric.

Day 32: 99%

We received wonderful news today. It began this morning at AJ's doctor's appointment, where we were told his bone marrow biopsy showed normal stem cell production for all three blood cell lines. YAY! His counts continue to rise, with white blood cell counts and platelets counts within normal ranges and red blood cell counts getting closer. We joked with Dr. Vear that one day they were actually going to give us a CBC report with no asterisks (meaning all numbers were within normal range) and on that day I will probably cry!

The even better news came this afternoon via a phone call from Misty, one of the transplant team nurses. She told us the results of the genetic study of the bone marrow indicated 99% of the marrow was of donor origin. This is a very high percentage at this stage post-transplant and the final confirmation of successful engraftment. This is the test result we have been praying for and are absolutely thrilled!!!! Again, AJ's battle is not complete and we must continue the disciplined regimen of medications, very limited contact, and constant monitoring. But this is one GIGANTIC step on his journey! God is Good!!!!

Also a big HAPPPY 3rd BIRTHDAY to JACKERS! We can't wait to see him (and his brothers) and celebrate AGAIN tomorrow! This is AJ talking with Jack via Skype at 8:31 this morning, right as Jack was turning three (although due to the number of celebrations he has had, he has decided he is now 4!).

AJ's hat of the day is not a silly one, but rather a patriotic one, and we love it!

Have a great weekend!

Cindy and Greg

PS - Updates are not coming as often as we have less to update, but we will continue with messages every 2-3 days.

Day 29: Our "Most Uncomplicated Patient"

AJ's bone marrow biopsy went very well today. We will not have results until Friday, but were encouraged with his blood results that are continuing to rise. His platelet count was 214,ooo!!!! While platelet count is not the only important number, it continues to be on the forefront with us because it was the first number to begin to decline (as early as when AJ was 3). To see it at such high numbers and within the "normal" range it just amazing to us. God is good! Dr. Frangoul even remarked today that AJ is "our most uncomplicated patient." Again, very encouraging words from a doctor who deals with this daily.

We have a very special thank you to send to Lt. Jorge Cardoso, the Palm Beach County Fire Fighters, and the staff at St. Mary's Hospital who sent AJ a wonderful group of photo messages. Jorge is a friend from high school, who has gone out of his way to send AJ messages of encouragement throughout this entire process, and calls AJ "his hero," which makes AJ smile from ear-to-ear every time he hears it. Jorge is among so many of you who having given us unwavering support - we love all of you!

While we were in the hospital, we had the pleasure of meeting so many wonderful families who are struggling with the horrible diseases that their children are facing. Every little face warms your heart, while every story breaks it. Our hearts and prayers are with these families every single day. One of those sweet little ones in Lyric Frizzell, a 10 month old just diagnosed with leukemia. She is absolutely precious, as are her parents. Please say a prayer for Lyric and her parents as they face this long battle.

On a lighter note, here is our hat of the day:

Lots of love,

Cindy

Day 27 and 28: Our New Normal

Things are getting pretty normal around here - as normal as they can be. Sunday Greg and AJ enjoyed some father/son time and I escaped to do a little shopping. They were able to assemble the model of the Space Needle we purchased while we were in Seattle, which is pretty cool.

Later in the day, we all watched Back To The Future together. AJ loved it! Greg and I were horrified when we realized it was released 25 years ago (WE ARE OLD!), and also surprised at some of the language in the movie. But all in all, it is still a great movie.

Today AJ and I got back to our schoolwork. We are still figuring out our rhythm but each day gets a little better!

Tomorrow is a big day. AJ will have a bone marrow biopsy to determine just how well he is engrafting. Please say an extra little prayer for AJ tomorrow morning as he will be sedated for the procedure (which scares me every time.) His procedure is at 10:30. We will try hard to update tomorrow evening.

Here is our hat of the day:

Love to you all!

Cindy

Day 26 - Revera Brothers Reunion

Today my brothers and Grammy came to visit. It was the first time I have seen and hugged them in 32 days. We had an awesome time.

We made cupcakes to celebrate Ryan and Austin starting Kindergarten, Jack turning three (this coming Friday), and me getting out of the hospital. We have a lot to be thankful for. We each decorated our own cupcake. I made mine with vanilla icing, M&Ms, and colored sprinkles. They were so yummy.

We spent the day coloring pictures, playing Nerf Dart Tag, and just being together. I have really missed them. We also built the Star Wars Lego battleship. Thanks to the Ritchies for sending it to me and my brothers.

Special thank yous to the Balazsys for the Peanuts comic book - I love it, and we didn't even hear you at the door. Thanks to Mrs. Parker for the Wimpy Kid books - they rock! And to Ms. Christine - the canned fruit was a very funny, but useful gift - they are already gone! We have also gotten several other packages this week. Thanks for sending things to me. My favorite part of the day is getting and opening mail.

-AJ

Day 23 and 24 - Settling In

We are settling into life outside the hospital, but still on severe restrictions. We are trying to establish routines and procedures to make sure we are monitoring AJ and on-time with all meds. Those who know me well know I need lists and charts, and I am still getting it all organized. AJ continues to do so well, but we want to make sure that progress continues!

We had our first outpatient clinic visit yesterday. His numbers are continuing to rise, with his platelet count at 122,000! That is higher than it has been in over 3 years. They have added magnesium to his list of meds, but other than that they are very happy with how he is doing. We will see them again on Friday and will have regular visits every Tuesday and Friday, unless something changes and they want to monitor AJ more often. They will do blood screens at each visit and will adjust his medicines regularly based on his numbers. Right now the soldiers in AJ's army are growing but they are not very well trained and are not ready for battle, so that is why is it so important to keep him away from exposure. Additionally AJ will have his first post-transplant biopsy on Tuesday. They are looking to determine the strength of his marrow. Those tests always make me anxious because he will be under general anesthesia, so please say an extra prayer for AJ on Tuesday.

AJ and I are also beginning school! We had a bit of a bumpy start yesterday, as Mommy was ready to dive in head first and AJ wanted to dip his toes in the shallow end. After a little struggle, we reached an understanding and are starting fresh today. So far, so good!

Jackers also had his first day of school this week. That got looked over on Tuesday because of all our excitement. Jack is in the young 3s class at preschool. He did so well and was so excited to tell us all about it!

FYI - we are having some computer and internet problems as we settle in. Hopefully we will get things figured out in the coming days. It is making us a little slower posting messages and pictures, and is also affecting Skype and Facebook. I think we have it fixed, but please be patient. And please keep sending us messages. Even though we are not able to reply to all directly, the messages are read, loved, and enjoyed! We have wonderful family and friends!!!!!!

Here are some photos from the past couple of days:

Cindy had the room decorated to the hilt.

The famed tree with messages from friends, family and medical staff. You'll note Dr. Sloan wrote "Go Buckeyes" so his leaf is a fallen leaf.

Another view...nice hat AJ

Dr. Frangoul, Dr. Vear, Misty and Katie delivering the good news that AJ gets to leave the hospital.

Going though the double doors at the end of the hall and leaving the unit for the first time. Note the hat of the day....SUPERMAN!

FREEDOM!
In mom's suburban (aka The Big Red Bus) ready to head to the apartment.

Thanks again to Tim, Daniel, Randy, Billy, Denice and Pop-Pop for moving AJ's furniture to Nashville. It was nice for him to sleep in his own bed.

Love to you all!

Cindy and Greg

Day 22: It Smells Good Outside

Wow! What a day. Dr. Frangoul and team came in this morning around 9:00 and gave us the final OK to get out. Of course that meant we got out sometime after lunch. While we were waiting for the final paperwork and a final medication, Cindy finished taking down the room and I packed it away in the truck. Cindy had done an excellent job making the hospital room as cheerful as possible. Consequently, we had quite a few posters and decorations to pack up. Not to mention the zillion hats, games, books and balloons all of you have sent AJ. We ended up filling up the entire back of Cindy's suburban (without the third row in place) as well as my blazer.

AJ got to say goodbye to some of the friends he made at the hospital. Perhaps we will see some of them in clinic in the coming weeks. My heart goes out to all these kids who, like AJ, are all fighting incredible battles. You so want to hug them and waive a magic wand and make it all better. If you are elegible and have not done so already, PLEASE put yourself on the bone marrow registry, www.marrow.org.

When we finally left the confines of the hospital and AJ opened the door to the outside he took a deep breath and said: "It smells good outside." AJ spent 28 days in the hospital. 6 pre-transplant and 22 post. It dawned on Cindy and I tonight that neither of us, in all 28 days, ever heard AJ complain that he was in the hospital. Not that he wanted to be there. Rather he took what was a bad situation and made the best of it. I wish I had his strength and dedication. Heck, I complain when the coffee pot is empty.

We spent the rest of the day unpacking into the apartment and I did another shopping run. Cindy took a bunch of photos today and I promise we'll get some posted tomorrow.

-Greg