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

Day 21: I'm Outta Here (tomorrow)

The doctors just came in and told me if I take all of my medicines by mouth today, I can be released tomorrow. I have to be careful of the sun, even when it is cloudy. I will need to wear lots and lots of sunscreen and a hat. All the hats that people have sent me will come in handy. I have to avoid crowds and for now I still can not have visitors. But I can take walks in the park in the early morning or late afternoon.

I am so excited!

-AJ

Day 20: The Neutrophil Dance

Yesterday afternoon we had a couple of visitors. First, Pat and Jerry Putman stopped by to wave from the parking deck.

A little later Kevin, Cristina and Ethan Worchester came by and dropped off a couple of gifts for AJ.

This included a beautiful and touching book Cristina created with the children in AJ and Ethan's class at Horizon. Each of the classmates wrote AJ a special note in the book. AJ really enjoyed reading it. He misses his friends. Thank you to Mrs. Towns, Cristina and the kids for this cool scrapbook.

Today we were again surprised by those at Horizon. AJ received in the mail a very nice card with messages from many of the teachers and staff. Its nice to know so many are continuing to pray for AJ.

This afternoon we played more card games. AJ also played checkers and talked to Anna and Ethan on the web cam. For you Jimmy Buffett fans out there, here is the hat of the day:

On the medical front, AJ's counts were again up. Most importantly his neutrophil count was 230. This number is critical for being released from the hospital so we need it to go UP! It needs to be consistently above 500 before the doctors will consider releasing him from the hospital.

We learned today that this number was not solely dependant on the growth of the new marrow. Apparently in the wee hours of the morning, while blood cultures are being drawn, the nurses conduct a Neutrophil Dance. Although it was not time for blood to be drawn, AJ convinced the nurses to let him see the secret dance. About an hour later Brooke and Caroline appeared in our doorway with a completely choreographed song and dance. These photos do not do it justice.

The nurses here are great. We love them all and they all love AJ. These great nurses take care of some really sick kids and do so with unending love and humor.

This is AJ with the whole night shift, Caroline, Kristie, Brooke and Ashley:

-Greg

Day 18, 19: Waiting for Engraftment

The days are becoming quite monotonous. Which, is a good thing. A boring thing, but a good thing. It means there is no excitement and AJ's body continues to slowly improve. They draw AJ's blood at 4:00 am. We get the lab results back around 6:00 am. The rest of the day it feels like we are waiting for 4:00 am. AJ's netrophil count was above 200 yesterday, but slipped back to 150 this morning. His platelets have remained stable and for the first time we have seen increased counts in his red blood cells. We have been told that every child is different but that most have their white cells recover first followed by red blood cells and lastly by platelets. AJ's body seems to be working on recovery of all three cell lines at the same time. Hopefully that will mean that when we do get released he won't need additional transfusions. It has been a week since his last blood product tranfusion. That was for platelets and his body has done well to maintain the post tranfusion platelet level all week, roughly bouncing around the 40 - 50 thousand range. (Normal is 150,000 -300,000). We continued to play games and watch movies.

One thing that changes each day, is the hat of day. This one was another hit with the nurses:

Day 17 - Marathon Man

Things continue to move along smoothly. AJ gets stronger and more active everyday. His counts continue to rise, with his ANC reaching 120 this morning (ANC is his ability to fight off infection - normal range is 2500 - 6000). Although AJ's is still very far from normal, it is steadily rising and that is a great thing. ANC is one of the numbers we will monitor very closely in the coming year to help keep AJ from getting sick, and one of the greatest reasons he will need to remain in modified contact isolation during that time.

AJ has been passing the time by exercising. He is walking (and riding a pedal tractor) daily. He completed 130 laps around the floor on Tuesday - that is 5 miles. Altogether he has completed 681 laps since he has been here, which equals 26.2 miles, earning him the title of Marathon Man. You can see yesterday's hat of the day that he was wearing as crossed the finish line:

Sara from Child-Life made him this great banner to commemorate his accomplishment. It is very funny! He has already completed 46 laps towards his next marathon.

The rest of the time AJ is reading, watching TV, or playing with the great things you all have sent. Our new favorite thing is Dart Tag which was sent by Mr. Frank and Sarah. It is a blast. We even went and bought a second dart gun to add to the fun. The nurses have to watch out when they come through because darts are flying, although a couple of the nurses are pretty good shots themselves.

So that is about it. They are starting to talk to us about responsibilities when we go home (home to our apartment, that is), and he is transitioning to taking his meds orally in preparation. No real time frame has been given but we are hoping it should be in the next 10 days or so - we will keep you posted.

Love to you and kiss your babies!

Cindy

Day 16: Sunrise

For the first time in many months, AJ's platelet count went up. Praise God.

-Greg

Day 15: Off to school (Part 2)

I had a great time taking Ryan and Austin to school this morning. AJ is a proud big brother and wanted to include a picture of his little brothers' big day.

I also got to meet AJ's teacher. Although AJ will likely never enter the classroom this school year, we are working with Mrs. Towns on all of his lesson plans. She is so sweet and expressed that she wants AJ to be included in the class as much as possible, and that they consider him a part of them. It really touched my heart, especially when I saw this.....

Sitting right at the front of the room, ready for him, it was very cool! We are hoping to get a webcam for the class so AJ can participate in lessons and just stay in touch with his classmates. It is going to be a great (albeit different) school year.

Day 15: Off to School

Cindy was back in Madison this morning and got to see Ryan and Austin off to their first day of kindergarten. I am sorry I missed it, but happy that AJ was well enough that Cindy could go.

AJ and I had another day of games and television. He is doing very well. His counts were up slightly again today and his platelet count has barely dropped over the past three days. These are all very good signs that the new marrow is engrafting.

We had some real silly hats today:

Cindy got back in time to watch me learning to clean AJ's dressing for his central line, as well as flushing the line with saline and heparin. AJ will leave the hospital with the line in place and we'll need to be able to do these things ourselves at the apartment.

Over the past few days AJ has been working at being able to take pills by mouth. One of the medicines he has been on requires a lot of hydration if being taken intravenously. He has been successful keeping the pills down and so this evening they took him off of IV fluids. He will only need to be hooked up for a few hours each day when he receives cyclosporin (a medicine to combat graft versus host disease).

-Greg

Day 14: Friends and Stuff

Another great day! My friend David came to see me from the parking deck today. I talked to him on the phone while we waved. It was great!

Mom went back home after lunch to take Ryan and Austin to their first day of school tomorrow. All my friends are starting school this week. I hope they all have a great start to the year and I can't wait until I can be with them all again.

This afternoon Dad and I watched some of the NASCAR race. Jimmy Johnson came in 12th. I also did another 78 laps around the halls.

So here's the hat of the day:

A cheeseburger, silly huh?

And here is a funny joke from a book Ms. Lisa from Dad's work sent me:

What has four legs and one arm?

A happy alligator!!!

Tonight dad and I are going to watch more movies and play Battleship.

-AJ

Day 13 - First Counts! (plus day 12 update)

Hi there! AJ and Greg spent much of Saturday hanging out together, while I picked up some supplies and did some laundry. Their day included playing games, making a frame, and watching the final Pirates movie (AJ's only nausea of the day came from a scene in the movie - go figure!) It was a quiet night with some dinner and another movie. All in all a great day!

This morning started off well with reports of AJ's first counts!!!! His white blood count was 0.2, which is the first sign of the donor marrow engrafting. We are so excited!!!! In the next few days we should see the number continue to climb slowly, but then it should build pretty rapidly. Definitely a step (if only a baby one) in the right direction!!!! Again we move forward with caution as this is also when GVHD (graft versus host disease) could set in with some rough side-effects. He had done so well thus far that we are hopeful all with continue to be smooth.

Thanks again for all the cards, packages, and well-wishing messages. AJ's overall spirit has been so positive and we think his mental health is definitely helping his physical health. We have listened to other families on the unit discuss the feelings of isolation and being alone in their battle. For us, that could not be farther from the truth. Not only are we closer than ever, everyone in our lives have stepped up for us. We appreciate all of you joining us on this journey. We are blessed!

On a lighter note, here is AJ's hat (and wardrobe) of the day in honor of Jimmie Johnson, who will be racing a little later. Go 48!!!

Love to you all!

Cindy

Day 11: More Friends and More Pirates

Its halfway through day 12 and nobody ever posted day 11! I had a great day. I played games with mom and walked two miles, well I peddled some of it. In the afternoon my friend Evan came by and brought me a real nice card and gifts. He also brought me a whoopee cushion. I'm having fun with the nurses by getting them to sit in the seat with the cushion. I got to see Evan from the parking deck. Thank you so much Evan for coming.

In the evening we watched Pirates of the Caribbean, Dead Man's Chest. It was a little scarier than the first, but it was really cool. I only hid my eyes when there was kissing.

Here is another Crazy Hat:

AJ

Day 10: First Crazy Hat

Day 10 was a slow day. AJ needed a red blood transfusion so he was hooked up to the infusion pump for a good portion of the day. That meant he was in his room for much of the day and there was not a lot of fun play time with his friends on the floor. Instead there was a lot of TV watching and board game playing to pass the time. We do however have a first crazy hat:

YIKES!!

Back home a large branch fell off a pine tree in the yard, crushing a section of fence. Thank you to Billy, Doug and Grammy who removed the branch and patched up the fence. Last night was also orientation for Ryan and Austin who start kindergarten next week. Thank you to Tammy and all the others who helped Grammy navigate the halls of Horizon.

-Greg

Day 9 - A Very Big Day

Today was a wonderful and very BUSY day. It started off with a visit from Grammy and the Monkey Bunch. Greg and I took turns spending a few hours with the little guys. During the switch, they had a huge surprise for AJ. When he came to the window to see them waving, they had a huge sign they had made, that said: "We love you AJ! From Austin, Ryan, Jack" It was very cool!

AJ has made some new friends on the floor. AJ met Austin and Peyton, and the three had a great time together playing games and making crafts. It was a lot of fun and they have already made plans for tomorrow.

The biggest part of the day came this evening when Greg shaved AJ's head. His hair started really falling out today and we decided it was time.

AJ looks great! (We used an electric razor so as to protect him from cuts. The stubble will fall out in the next day or two).

And then it was AJ's turn to shave Greg's head! Yes, I said AJ shaved Greg's head. And Greg looks great too!

Let me just say, I am married to the most amazing husband and father. It was such a selfless thing Greg did so AJ was not going through this alone. I love him more than I ever have!!!!

Chat with you soon! Please keep praying! The Lord is definitely listening and looking after AJ!

Cindy

PS - Crazy hats start tomorrow!!!!

Day 8: TV and Games

Yesterday, day 8, AJ took to riding a toy tractor around the halls (28 laps), watching TV and playing Rush Hour with Mom. AJ talked to David on the phone for awhile and video chatted with Justin. He continues to feel good so we are working hard to keep up with him. His full appetite is returning as well. Yesterday he ate spaghetti, Cheetos, tacos, and all sorts of snacks. The doctors are going to start moving AJ to oral medications, and limiting his IV fluid intake. All of these things are good signs for an eventual release from the hospital, although that is still weeks away. As always they caution us everything could change very quickly so we remain optimistic and very happy, but also very cautious. Hoping today is another uneventful day!

Day 7: More Resting

One week post transplant, yeah! AJ was feeling better on Monday compared to the past three days. Of course that meant more video games for AJ and me. There was a quite a few boxes, cards and other mail over at the apartment this afternoon. It has been a few days since either Cindy or I had been there.

Thank you everyone for sending the cards, gifts, hats, etc. You all are wonderful!

The doctors continued to be happy with AJ's progress and spirits. And of course the nurses all adore him. Medically, we are waiting for the first signs of engraftment. The early signs are an increase in a blood count over the previous day's count. That should hopefully happen towards the end of the week or over the weekend. Currently, AJ's white blood count is nearly zero. But this is all to be expected.

-Greg

Days 4, 5, and 6

We've had a few sluggish days. AJ's been feeling a bit rough, nauseous, and sleeping a lot. The methotrexate from day 3 seemed to just wipe him out. Unfortunately he gets another dose this afternoon - fingers crossed it will go a little better. All that being said, the doctors still feel like AJ is doing very well, and are happy with his progress. His side effects thus far have been fairly minimal and are all completely expected. His current cell counts are so low they are immeasurable. The battle within him will begin in the coming days as the donor marrow begins to take over. Again, fingers crossed and prayers being said that it will continue to go smoothly.

During his awake times, he and Dad are playing SimCity, and he loves it - despite the fact his first city was engulfed in flames - oops!, and his second city was destroyed by a nuclear accident - yikes! He is also enjoying all the things he has received and continues to receive. Thank you to the Ritchies and the McGarrys for the big bunch of balloons - it was a nice surprise.

I think AJ's biggest surprise came this morning. The nurse knocked on the door to tell us there were visitors with a package. Greg walked out to meet them (since AJ continues on isolation). Greg returned with a cute package and a few minutes later there was a surprise out our window. It was Anna and her family. AJ was able to walk down to the sunroom at the end of the hall so they could see each other better. It was very sweet. They talked on the phone as they waved out the window. Thank you to Mike and Jackie for making that happen - he was so happy!!!

(click to zoom)

Please continue to pray for his recovery!

Cindy