Day 148: I'm a superstar! HA! HA!

Hello everybody! If you watched the news last night on channel 19, you may have heard more about my Christmas Wish. My friend, Ms. Claire, put together a news story about our family and all that happened this year. She showed my brothers and me playing together, and shared my Christmas Wish. If you would like to see the clip or read the story, you can check it out here.

http://www.whnt.com/news/whnt-revera-bone-marrow-christmas-wish-122109,0,650977.story

Our current count is 110.

Thank you again to everyone who joined and made my Christmas Wish come true. And thank you to Mrs. Claire and Mr. Shane (the cameraman) for all the work they did.

And remember : SEND THOSE PACKETS BACK!

AJ

Day 146: We reached 100!

Hello everybody! This is AJ typing. First off I would like to thank the people who joined the registry and helped to make my Christmas Wish happen. Also speaking of my Christmas Wish I reached my goal yesterday! Yippee!! You can still join the registry. Remember it's free from now to the end of the year. http://join.marrow.org/ajchristmaswish

Please remember to send you bone marrow packets back to the registry.

Also you can read about my Christmas Wish in the Madison newspaper or on the news tomorrow at 6:00pm on channel 19.

This is the cover of the Madison paper!

Read the story here: http://www.madisonalmagazine.com/

Day 137:Video

http://join.marrow.org/ajchristmaswish



http://join.marrow.org/ajchristmaswish

Day 134:Getting Closer

Hi everybody!! Thank you everyone who has joined the registry. Finally, after two weeks, we are past the halfway mark on my drive. Yippee!!! So far 59 people have told us that they have or will register on the National Bone Marrow Registry. That leaves just 41 to go but I can not do it without your help! So don't forget to join the registry! Remember you can save a life!

Daddy and I made this flyer which we will be dropping off in neighbors' mail boxes.

-AJ

P.S. Mommy, Jack and I went to Vandy today. The doctors said I am doing great and all my numbers look good.

Day 122: Happy Thanksgiving

Happy Thanksgiving to everyone! I am thankful for my family and my friends. So far, I have had a happy thanksgiving. I am most thankful that Austin was a match for me and I keep getting healthier. I am also very thankful for the 18 people who have signed up to the Bone Marrow Registry. 82 people to go to reach my goal. I hope you will join the registry and help me meet my goal.

Now I am going to watch a Charlie Brown Thanksgiving. Have a great night.

Day 115 - Please join the registry

Austin's bone marrow saved my life! I was lucky to have a sibling match. But some people do not have matches in their family. They have to have strangers that help them. Maybe you could be one of those strangers who saves a live. Please join the bone marrow registry. It is free from now until the rest of the year. It is my Christmas wish to get at least 100 people to join the registry. Please help me reach this goal. The National Bone Marrow Registry has set up a special link to help me reach my goal.

Here is how to do it:

1. Log on to http://join.marrow.org/ajchristmaswish

2. Follow the directions.

3. They will send you a packet to complete and swabs for your cheeks.

4. Mail it back. You are one the registry. It is easy.

Austin is only 5 and he did! So can you! Remember you can help save a life.

AJ

Day 100 - Yahooey!

Guess what day it is....DAY 100! Tonight we celebrated with dinner from PF Changs, and a cake that Mom and I made. The cake was very sugary but very delicious. Mom created the 100 but I decorated it. Here it is:

Thank you for keeping me in your prayers. My line was removed on Monday. I am feeling a lot better without it. It is a little sore but I still feel pretty good. Here is me flushing my line for the last time, and what my chest looked like after surgery - don't worry that is just betadine.

This past weekend was filled with fun. Grandma and Pop Pop were here. I think you saw the pumpkins we carved, and our costumes. We also went to a drive-thru zoo safari. While we were there, a ram rammed Mom's car - she was mad, but it didn't leave any damage. We were followed by many Emu who just wouldn't leave us alone. We also saw a zebra, some alligators, a few buffalo, and some geese. It was lots of fun.

The rest of the week I am going to work, work, work to catch-up on schoolwork. But Mom is taking it easy on me this week. I go back to the Clinic next Tuesday and will also go to the Eye doctor to check my eyes for problems from the transplant. So far, all my tests have been normal.

Talk to you later!

AJ

Day 99: Hickman is gone

AJ did wonderful yesterday morning. It is so nice to not have the Hickman line in him anymore. It was a constant worry to Cindy and I. AJ also had a clinic visit with Dr. Frangoul. His numbers were again up and with his improvement and removal of the Hickman, they are going to start taking him off of some of the medications.

-Greg

Day 97: Halloween

We had a great Halloween weekend. Grandma and Pop-pop came for a visit this week and they helped us all carve some great pumpkins Friday night. Even Jack made a little one with a marker. Of course he also used the marker to draw on a few of mom's bowls and the table.

Yesterday, after watching the Hurricanes pull off a last second victory, the kids all went trick or treating with their friends Tyler and Ian. Cousins Jacob and Colby also came and everyone had a great time. Mr. Doug (Tyler and Ian's Dad) pulled everyone in his trailer which we had filled up with hay. AJ rode in the back of the truck. He wasn't able to go knock on doors, but he was able to watch everyone else and munch on the bowl of candy Cindy brought along for him.

Tomorrow is a BIG day. The Hickman catheter which AJ has had in his chest since July 21 is being removed. It is a minor surgery but he will be under general anesthesia. We'll be leaving home around 5:00am. Please say a prayer that everything goes well tomorrow for AJ. We'll update everyone tomorrow evening.

-Greg

Day 92:Tests, Tests, Tests

Hello everyone!! It's been awhile since I have written. I have been busy doing school work. My favorite subjects are science and math. But it has been a lot of work! Mom is a good teacher and I am doing good with my school work.

Today we returned to Vanderbilt. I saw Dr. Frangoul and had a lot of tests done. Like checking my heart and my lungs. Here is a photo of them looking at my heart.

And this is a photo of them testing my lungs. I had to do it a few times.

We will know in a few days how the tests went and if the medicines are effecting me. Hopefully they aren't. Next week, I will have my line removed. Which means I will have to start getting stuck again in my arm. OUCH!!!

After the tests were done we went up to 6A to visit some of the nurses. While we were there mom and dad talked to the grandparents of my friend Brittany. She is having her bone marrow transplant tomorrow. Please say a prayer for her and her sister, Megan, who is donating the marrow. Please also keep my friend Lyric in your prayers. She has been very sick lately.

AJ

P.S. Look at all my hair growing back!

Day 83: Slow and Steady

Hello everyone! Things continue to progress nicely. We have not updated in quite a while because there has not been much to update. Tomorrow AJ is 12 weeks post-transplant - can you believe it!!! We are continuing our weekly Tuesday trips to Vanderbilt for clinic visits, which continues to be our most difficult and LONG day of the week. It completely wipes all of us out!

The rest of the week is fairly normal. Ryan and Austin are back at school, and loving it. Jack is back at preschool two days a week and reluctantly settling back in. The three little ones have all received the Swine Flu vaccine (first 3 to get the shot in North Alabama) so we are hoping that will squash the chance of it settling in at the Revera household. And AJ is charging forward as a third grader. I can't believe the first grading period is behind us already. We are enjoying riding bikes and playing outside when the weather allows, but still are keeping AJ away from visitors and germs as much as possible. Hopefully this will ease in the near future - we will let you know. For now, this is our new normal - and normal is moving along just fine!

This week's clinic visit will be the same as normal. Next week AJ will go through the complete work-up of tests that he had pre-transplant. They will compare his results to the first set to evaluate his organ function post. If all goes well, his central line will be removed the week of November 2 and we will hit the magical (yet largely only symbolic) 100 day mark! I think both Greg and I will feel considerable relief when his line is out and the risk of infection decreases significantly. This is the next major hurdle for a while.

Yesterday I was going through photos of our hospital stay. I was completely overcome with emotion. In my head I look back and think how well AJ has done and how "easy" this has been compared to what we expected. Looking through those photos I was reminded how difficult it truly was at times. In some of those photos, AJ looks so incredibly sick and weak. His little body endured so much. It was a good reminder how far he has come, and how grateful we are. It also showed how much healthier he is today. Still sporting the fuzz and not 100 percent, but getting stronger and healthier everyday. I think I needed the reminder!

We will check in again soon. Hopefully we can report nice and high numbers after this week's blood check. Please keep AJ in your prayers. We feel the hardest days are behind us, but know his journey is not complete. Friends and family and all the wonderful support has helped us so much along the way. Your messages always provide such a lift to AJ.

Chat again soon!

Cindy

Day 71: No Asterisks

What a day we have had! Our weekly trip to Clinic this morning gave us great news. AJ's counts from all three cell lines were up, and for the first time EVER, all within normal ranges. YIPPEE!!!! There were no asterisks on his report. We cheered, we high fived, we did the happy dance - it was amazing!!! It was also a great trip because we got to see baby Lyric and her family, Austin and his Mom, and one of our favorite 6A nurses, Deanna. Back to Clinic next Tuesday for monitoring.

We got amazing news for another doctor's office as well. Austin had a fever last night and this morning of 101.4. Grammy took Austin to see the pediatrician while we were in Nashville. Fortunately, both his flu and strep test were negative, and his blood counts were all normal. The doctor thinks it is probably viral. He has been fever free all day and seems to be feeling fine. We hope that continues tonight and he can go back to school tomorrow.

Ryan has his own unique news to share. Since AJ lost his hair, Ryan has begged us to shave his head. We were reluctant at first but he has remained steadfast and determined that he wanted to support his big brother and be just like him. This weekend he finally wore us down. He says now he is a member of "The Bald Boys." He looks really cute and is so excited!

Thank you to my Aunt Pat and Uncle Tommy for sending us a beautiful fruit basket - it is huge. The kids are already digging in to it - we really appreciate it! And thank you to Cristina and Kevin Worcester for bringing us dinner tonight. Tuesday trips to clinic make it a crazy day and it was a very welcome treat to have dinner ready for us! You rock guys - we love you!

And finally, a special shout out to the Cub Scouts of Den 9! AJ was able to participate in their scout meeting tonight via Skype. Thanks to Den Leader Dan for setting it up. It was really cool!

A busy day, but one filled with happiness at every turn!

Love to you all!

Cindy

Day 64: School and Games

I have been doing good in the past nine days. I've watched T.V, rode my scooter, and worked on school with Mom. We are learning about fossils, landforms, natural resources, and different types of stories. I am writing a story about our Halloween Hayride from last year. I did my rough draft today and we will revise tomorrow.

Last week I got a surprise call in the middle of the day. It was Mrs. Towns, my third grade teacher. After I talked to her, she let me talk to everyone in the class. It was so cool and I was really surprised. Mrs. Towns even told me some of my work was hanging in the classroom because they wanted everyone to know I was part of the class. She also said I am doing great with my schoolwork and to keep up the good work.

I have been to the clinic 3 times since I got home. My numbers are good but a little lower than they had been. Dr. F says not to worry. I go back to clinic on Tuesday. Hopefully my numbers will be higher. On Monday at clinic I had to get some fluids because I wasn't drinking enough. Now I have to write down everything I drink to remind me to get enough. I promise to drink a lot each day.

I will try to write messages more often. Have a good night.

AJ

Day 54-56:home sweet home

I would like to thank everyone who greeted me at my house. I love the signs, donuts, balloons, and surprises you left for me. Thank you to Ms. Cristina and Ms. Jackie for setting up the big surprise for me. I was very happy to see all my friends. I have missed you all very much. It is nice to be back home and with my whole family. I spent the whole weekend with my brothers watching TV and playing games. I can't wait until I can play with my friends again. Here are some pictures of me coming home. Thank you to Mr. Balazsy who took the photos of me arriving home.

Day 54: Packing up and Heading Out

We have packed up everything and we are headed back to Madison. Mom and I are going to Grammy's house for the day since I can't be around people. Some new friends in TN are coming to help Daddy load the truck here, and some old friends from AL are meeting him to help unload. Mr. Randy is doing double duty and even got us the truck. I should be home late this afternoon. The first thing I am going to do is hug my brothers, and then I'm gonna ride my bike - even if it is raining!

It is a happy day!

AJ

Day 50 - The Big News

WE ARE GOING HOME THIS WEEKEND!!! I FEEL GREAT!!!!

I will get to ride my bike again! I will get to play with my brothers! I will get to sleep in my room again! I am so happy!

Mom and I went to the Parthenon today. It is gigantic. We didn't go inside because I still can't be around people, but it was nice from the outside. We also saw a huge locomotive and a figther plane. Plus we played some soccer. Here are some pictures:

Here is the hat of the day:

Thanks to Mrs. Dugaw for the solar-hat with the fan, and for the book of gross jokes - they totally rock!!!

AJ

Special note from Mom and Dad:

Transplant patients are at greatest risk for GVHD (Graft versus Host Disease) immediately after engraftment with the risk decreasing over time. Typically the first 100 days are used to monitor and control this. AJ has been extremely lucky and shown no signs of GVHD, and the doctors feel it is safe for us to move home now. This move will reunite the family, however, AJ remains immune-compromised and must continue isolation from everyone but immediate family. No visitors!!! (They literally made us promise no parties or gatherings to celebrate his homecoming.) They will continue to monitor his levels and his progress with twice a week visits to the clinic in Nashville in the weeks and months to come. At around day 100, AJ will undergo another biospy and his Hickman line will be removed. If all is proceeding as planned, the frequency of clinic visits will decrease but he will continue to be monitored for the next year. AJ's journey is not complete and unfortunately, there may be bumps in the road ahead, but we are so blessed with the way things have taken place thus far.

We want to thank everyone again for your love and support, and especially for your prayers. Many of you have expressed the desire to visit AJ. We appreciate this so much and cannot wait until the day comes when that will be possible, but for the moment please understand that we cannot accept visitors.

We love you all,

Cindy and Greg

Day 47: Robots and Cookies

Prior to going into the hospital Denice made AJ a little flip calendar with 100 days counted up. Each page is unique and it has been an awesome gift. Thank you, Aunt Denice.

AJ continued his studies with mom the past few days. AJ says his favorite subject is still math, but he is also liking social studies and science, especially the anatomy lessons they have been working on. AJ's clinic vist on Friday went well. Dr. Frangoul continues to be very happy with his progress. We are hoping to have some big news in the coming days. So keep checking!

Here are some hats from the week:

AJ in true form... a Monkey!

Doing school work in a Mickey hat.

On Sept 11, he wore an Airborne Ranger hat (thanks, Pat). With a great message for the day on the back...

Each evening this week, AJ and I worked on an erector set, finally resulting in a little motorized robot. It is pretty cool.

One more thank you... to Aunt Vanessa who spent last week in Madison giving Grammy a few days off.

Our Saturday ended with an evening picnic at a local park and homemade cookies by Mommy.

-Greg

Day 42: It's Great To Be A Miami Hurricane

A great night watching ball.

Day 42: Happy Labor Day

We are getting ready for the big game tonight. We've had a lot fun this weekend. AJ and I played some soccer yesterday and we also went for a jog with Mom. We spent our indoor time putting together an erector set. If we can ever figure it out it will be a little robot. Here is a picture of AJ and I at work on the robot.

Special thanks to the Urness and Thorsen families for preparing us a great meal for Saturday night. AJ has a special hat of the day for Labor Day. A nice patriotic one sent by the Ludwigs, when you pull the strings the hands clap and wave the flags. AJ's response, "Awesome."

GO CANES!

-Greg

Day 40:Roll.........Hokies!

Not too much new to share....AJ had another good appointment with the doctors. Numbers continue to fluctuate slightly, but they say that is to be expected and fluctuation would be the same in a "normal" healthy person checked as often as AJ is. His platelet count has hit an new high of 225,000 (we have one CBC from his file when he was 2 years old, where his platelets were 246,000, but as we now know they must have started to drop in that following year.)

Other than that nothing much is new. We are spending a lazy Saturday watching college football, patiently waiting for Miami to play Monday night. As for tonight's big match-up, we are a family divided....Cindy is rooting for VT (because I promised Anna I would, and she promised to root for Miami!).....AJ is rooting for Alabama....and Greg really wishes both could lose! Since no battle cry works for all three, we will stick with "GO CANES!!!"

We are a little disappointed but decided the little ones were best to stay away this weekend, with the agreement of doctors. Swine Flu is all around in Madison and even a couple of their friends have come down with it.

Here are some photos and hats from the past few days, starting with today's hat of the day.

Hat fun with Mom:

AJ loved the cookies Rhonda, Troy and Quinn sent:

Going for a jog decked out in John Deere:

Just being silly:

Hope you have a great weekend!

Day 38 - A quick note

Sorry it has been awhile since our last post. Greg has been in Madison, and I have had my hands full. AJ is continuing to be a superstar! Numbers are rising, or at least holding strong. He got a good report at Tuesday's appt, and we go back tomorrow. School is moving along. Daily I am surprised at just how smart that kid is! All in all, things are good! We will just keep praying for him to continue to get stronger everyday, and for the Swine Flu to get out of Madison before they let us come home!

Love to you, and kiss your little ones!

Cindy

PS - Now that Greg has returned we will resume hat of the day (I don't know how to post pics on the site.)

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