AJ Revera's Care Blog

September 2010 - A Dream Come True

2010-09-21T10:41:00.005-05:00

Hello everyone!

The Reveras have just returned from the Happiest Place on Earth - of course, I mean Disney World. It was an amazing trip filled with characters and rides, and tons of family time. We met Mickey, Minnie, Goofy, Pluto, Chip and Dale, Pooh and friends, Rafiki, Baloo, Jiminy Cricket, and endless others. We ate breakfast buffets, dinner buffets, cinnamon buns, popcorn, Mickey shaped ice cream, frozen lemonade, meals with characters, meals with fire, and more cheeseburgers than I thought possible in one week. We got soaked on Splash Mountain. We yelled our heads off on Thunder Mountain. We sat by ghosts on the Haunted Mansion. We rode Test Track over and over and over! We saw tons of unbelievable animals on the safari. And we helped Kim Possible catch the villain at Epcot (a very cool game if you have never done it - the whole family was impressed!) We did it all and it was a wonderful week!

Breakfast at Mickey's

So many special things happened this week. AJ and I searched for (and found) all the hidden Mickeys on the scavenger hunt at the Wilderness Lodge - he even got a special pin for his accomplishment. Ryan was chosen during the Monsters Inc. Laugh Floor and cracked everyone up! Austin finally got the Mickey Sorcerer's Hat he has always wanted and conquered his fears to ride Tower of Terror, Rockin Roller Coaster, and Expedition Everest (which I think Ryan rode about 8 times). My boys are speed demons! And Jackers had a magical moment when he was able to lift the sword from the stone in front of Cinderella's carousel, and Peter Pan and Wendy bounded out to declare him King of Fantasyland! It was so cool!

King Jackers!

But my favorite moment was far more simple. It was our first day and we were riding Soarin' - one of my favorite rides and absolutely beautiful. I looked down the row and there I saw sitting next to me the 5 most precious things in my life with pure amazement and enjoyment painted all over their faces. Greg and each of the boys were lost in the splendor of the ride. Smiles lit up their faces and their eyes danced. I was reminded of a moment 14 months ago. There was one particular night in the hospital when AJ was very ill and I was filled with fear - could he handle this? would he survive? were we going to make it through? I so clearly remember looking up and seeing the photo collage we created for his room, and focusing on a photo of our last trip to Disney. At that moment I longed to be back in that photo, in that moment captured in the photograph where we were so happy and he was so healthy. And now here I was! The tears streamed down my face and I carefully studied each of their faces so I would not forget a second. It is a moment that will live in my heart forever. It was perfect!

Life is a journey, enjoy the ride!

And so was our trip. The trip we planned and looked forward to for a year. The trip that every family member voted as their perfect way to celebrate. The trip that got us through some low points. And the trip that signifies that is all in the past. If it is trip to Disney, or some place else you love, take some time with your family and celebrate. The moments go by so fast, but the special memories we make are forever.

Love to all of you!

Cindy

PS - Hayden and his family received wonderful news and his prognosis is excellent! Thank you for the prayers!!!!

Need some prayers for a friend

2010-09-09T20:54:00.002-05:00

One of AJ's friends, the boy who sits next to him at school is currently going though some health issues. Please pray for Hayden and his family as they face uncertain times.

Cindy and Greg

August 18th - Marking of another "anniversary"

2010-08-19T13:39:00.004-05:00

Yesterday was our typical day - boys were up at 6 am, hit the bus stop by 6:45, returned from school at 3:00, took care of homework and packing up for the next day, went to their friends' house to play at 4:00, helped make individual pizzas for a late dinner at 7:00, and after showers, were all in bed and asleep by 8:30. Typical day. What was not so typical is that one year ago AJ was being released from the hospital. What a difference a year makes. That was a day filled with jubilation and anxiety - would we be able to care for him, manage his line and his medicines, and keep him safe from germs? I remember that day feeling so conflicted. I wanted to be out of that hospital so badly but I almost didn't want him to leave behind the safety its walls and staff had provided. It is hard to believe that was a year ago. Yesterday was so completely different and so completely normal. To tell you the truth, I am not sure if we even mentioned the "anniversary."

Our lives are now filled with soccer practices and games, school, playdates, Cub Scouts, and Church. Instead of counting days post-transplant, we are counting down to Jacker's 4th birthday (in 9 days), the start of Miami's football season (in 14 days), and our trip to Disney (in 24 days), plus the Canes beating Florida State ( in 52 days - I said it last year and it worked so we are gonna try it again!) We are getting excited about Halloween and getting costumes ready, anxiously anticipating the cooler fall weather and changing leaves, planning a trip to Gatlinburg for Thanksgiving, and believe it or not, I have even already gotten some Christmas gift requests. Our days and our lives are filled with all of the typical things that come along with raising four very active, HEALTHY, not-so-little boys.

We have moved so close to completely putting AJ's illness behind us. It is no longer the driving force that affects every move and decision. We have finally recaptured that sense of freedom that had been ripped away from us. That sense of normalcy that we all take for granted. Our lives are not dictated by doctors appointments, restrictions, and medicine. It is odd in some ways and completely freeing in others. Not a day will ever go by that I will not stop and give thanks to the Lord for saving our child and preserving our family. But everyday I am learning to let go of the pain, the anxiety, and the fear, and to make room for the fun and the laughter, and to embrace life. I have said this before, but normal has never felt so good!

Hug your little ones and never take a second for granted!

Love to you all,

Cindy

Right Now!

2010-08-16T23:04:00.002-05:00

Below is the video we showed at AJPalooza! Thanks again to everyone for making it such a special day!

AJPALOOZA!

2010-08-02T10:50:00.011-05:00

Last Saturday was the BIG PARTY! It was a blast. We had popcorn, snow cones, and two big inflatables. One was a big yellow slide and the other was a gum-ball bouncy house. There were balloons all over the place and a huge poster of me at the entrance with my mohawk. After it got it dark we watched Star Wars outside on a big inflatable screen. We had bar-b-q and hot dogs to eat. Over 150 people came!

(The snow cones were very popular..it was 100 degrees!)

(Getting ready for the slide show and movie!)

I would like to thank everyone for coming and a special thanks to Mrs Cristina for singing.

Your friend,

Day 365: ONE YEAR!

2010-07-27T22:31:00.007-05:00

Can you believe it? It has been a whole year already since my transplant. It has been a great year! Today I went bowling with Mom and my brothers. It was a lot of fun.

For dinner my family and I went to P.F. Changs to celebrate. It was delicious!

My big party, AJPalooza, is going to be this Saturday, July 31. All my friends and family are coming over. We are going to have a great time!

-AJ

Day 355: The results we have prayed for

2010-07-16T21:48:00.004-05:00

Hello everyone! Today is the day we dreamed of. We received AJ's one year test results. His heart and lung function is normal, as is his thyroid and growth hormone. His blood counts are the strongest they have ever been, and his engraftment studies showed 95% donor marrow, which in the words of his doctor "is excellent." His immune studies are now normal and he can begin to receive vaccinations (a side-effect of chemo and prep for transplant is that his entire immune system was wiped out, including all previous vaccinations, so he is much like a newborn baby and we must start over.) All of this being said, our prayers have been answered and our little boy has conquered this horrible illness. We are thrilled, and relieved, and thankful!!!

Your love and support throughout this year has given us the strength to make it through. We love each and every one of of you!

All our love,

The Reveras

Here are a few photos of his big day of tests and of our lunch at Buca on the way home.

Day 318: Almost there

2010-06-09T11:09:00.002-05:00

Yesterday AJ had a great checkup at Vanderbilt. Dr. Frangoul said we are cruising right along. His blood results were normal across the board - did you hear that - NORMAL!!!!! We are so excited. His next appointment is July 13th, which will be his one year checkup (even though that is about two weeks shy of the actual date). They will run a complete battery of tests to compare with pre-transplant tests, as well as bloodwork to determine the composition of his marrow (percentage of donor marrow). It is the final step in this journey and our nightmare will be over.

And then we PARTY!!!!! AJPalooza will be July 31st. This will be a celebration of AJ's recovery, of our family's strength, and of our gratitude to all the friends and family who supported us along the way. More information to come....stay tuned!

We have been blessed with meeting another family who unfortunately is also enduring this nightmare of aplastic anemia. We are happy to say Nick is one week post-transplant and doing well. We were able to meet his wonderful mother this weekend and have been trying to share our experiences with her. It is our chance to pay forward the love and support we were given this past year. Please keep Nick and his entire family in your prayers.

On a happy note...AJ is getting back to most normal activities. We have been out to eat a few times, to the movies, swimming at a friend's house, and even had a day trip to Nashville with Grandma and PopPop- just for fun, no doctors!!! AJ and his brothers are taking swim lessons, going to SciQuest day camp next week, and looking forward to a beach trip in a few weeks. Sunscreen is still our BEST friend and we are still monitoring him closely, but return to more normal outings has been good for all of us.

As always, God is Good! And we love all of you!

Cindy and AJ

Day 311: Pray for my friend

2010-06-02T09:18:00.003-05:00

My little friend Nick, who is only 4, is having his transplant today. His big sister is his donor. Please say a prayer for Nick and Emily as they go through their procedures today.

Love,

Day 283: It's Been a Long Time

2010-05-05T22:03:00.002-05:00

Sorry I haven’t posted in a while. On the weekends I’ve been playing soccer and watching Ryan and Austin play baseball. During the week I have been busy with school work. I am learning about energy, cultures, space, and writing opinion paragraphs. Yesterday I got to go to a class picnic. It was the first time I got to be with all my friends in almost a year. It was great! My health has been very good. We only have to go to Vandy once every month now. I am going back on Tuesday. Tomorrow is the one year anniversary of learning Austin was my match!

Please say a prayer for Nashville, Tennessee. There has been a flood there and a lot of people got hurt or lost their homes. Even the hospital had damage.

In a few months it will be one year since my transplant. We are having a BIG party for my one year mark! It is called AJ Palooza. We will update on it in future posts. So check back.

Day 239 - Today is a bittersweet day

2010-03-22T10:00:00.003-05:00

One year ago today AJ hit his head resulting in a bruise far greater than the hit should have produced. When we added this to other physical symptoms we were noticing, we knew there was a problem. But we definitely were not prepared for what was to come. We were sucker punched the following day by his extremely low blood counts, thus beginning this life-changing journey.

Today is filled with conflicting emotions because we are absolutely thrilled and thankful for AJ's health and how far we have come in this year, but the reality of all he has been through, and all our family has been through still stings. As I flipped through a 2009 calendar where I had noted all the appointments and platelet transfusions, and recorded all the test results, I realized today is just the first of many "anniversaries." The anniversary of the day he was diagnosed...the day we found out he needed a transplant...the day we found out Austin was a match...the day his treatment began. As we look towards those days it is hard not to relive the uncertainty and fear that accompanied them. I am sure the day will come when I can discuss the past year without my voice cracking or tears welling up in my eyes -- but then again, maybe it won't. The experience has changed me forever and will always be with me. It has changed our whole family.

So for today, still carrying a heavy heart, I will acknowledge our struggles but I will more importantly try to embrace how far we have come. I will celebrate that AJ has only one more week of his much-despised anti-rejection medication. I will celebrate that he continues to meet or far exceed every expectation. I will celebrate each of the upcoming "firsts" post-transplant - attending a friend's birthday party, eating out at a restaurant, participating in a soccer practice - all which will likely take place this week. I will simply celebrate still having my child. So one year from having the wind knocked out of me, I can breathe again.....one breath at a time.

Love to you all!

Cindy

Day 215 - It has been awhile....

2010-02-27T12:18:00.016-06:00

Sorry it has been so long since or last post, but boy, have we been busy!! Our Christmas was amazing! It may be one of the most special times our family has ever enjoyed. After the hardest year of our lives we realized all we had to be thankful for and all we have to celebrate! The boys were handsomely rewarded for all they have endured this year, and while I am sure that may come back to hunt us next Christmas, watching their faces and their excitement was priceless and something I will truly never forget! It was perfect!

(Christmas at home)

(Christmas at Grammy's)

The party continued into January as we celebrated AJ's 9th birthday! There was a period of uncertainty when AJ was first being diagnosed when I feared we may never see him celebrate another birthday. That all made this birthday especially sweet!!! We first celebrated with just our little family as we always do, with a homemade cake he helped make and PFChangs - his favorite! Then we hosted a Clue Murder Mystery party with family and a few friends, costumes and all. It was so much fun! He is already planning for next year! AJ's favorite gift was his WiiFit Plus balance board and the Winter Olympics game. I think the whole family has enjoyed it. January also included Ryan and Austin each losing their first tooth, celebration of 6th months post-transplant!!!!, and a new washer and dryer (yea for me!). All in all, a good month!

(The exact second AJ turned 9 !)

(Clue Murder Mystery Party -- Aviator Orange)

(Clue Murder Mystery Party -- Senior Azul)

(Clue Murder Mystery Party -- Chef Austin)

(Clue Murder Mystery Party -- Col. Mustard)

(What a Cake!!)

February continued the celebrations - this time for Ryan and Austin as they turned 6!!! We had a party at the Space and Rocket Center, with an amazing Space Shuttle Cake by Aunt Denice. Grandma and PopPop Revera even came to town to celebrate. It was a blast - no pun intended! Their favorite gift was their new bikes (and are actually headed out for a ride today to enjoy the beautiful weather!) We were thrilled that Dr. Frangoul agreed to let AJ attend the party, one of his first public outings.

(Ryan and Austin's 6th Birthday party at

NASA's Space and Rocket Center)

Another first was AJ's first post-transplant haircut. Seems like such a normal, routine thing but I cried. He looks more like his old handsome self again - one more step toward leaving this illness behind! AJ also got to participate in his Cub Scout Pack's Pinewood Derby. He won the looks category in his division and placed second for looks overall in the Pack. He was very excited and looking forward to the District Derby in two weeks. We have really been having fun watching Team USA kick butt in the Olympics. Who knew Curling could be so addicting! February also included trips to the Circus (for all but AJ), Greg's bout with pneumonia, Valentine's Day goodies, and more lost teeth for R and A. A little bumpier, but still a good month overall!

AJ continues with trips to Vanderbilt every two weeks, and will for the foreseeable future. His bloodwork continues to show strong numbers. AJ is an amazing student and maintaining a 98 or above average in all his classes. We have signed AJ up to play soccer this spring - and again, he is so excited! He is looking forward to spending some time with friends, getting some exercise and just getting out of the house. Ryan and Austin will also be playing baseball - though they are devastated to be on the Yankees and want the world to know their hearts belong to the Mets!!! :-) We are still taking baby steps forward with AJ's exposure. He is slowly being allowed to do more in very controlled environments and as the weather warms up, we are looking forward to tons of time outside. Everyday it feels more and more like normal - and normal feels amazing!

On a final note, our lives have been touched by so many wonderful people throughout this journey. The ones who leave the biggest mark on your heart are the littlest ones facing the biggest battles. We pray for these little angels everyday and ask you to do the same. My child is quickly returning to being a healthy child and I know that was impacted by all of his prayer warriors. I believe in prayer and have witnessed its power. There is a commercial that always makes me cry that says give thanks for the healthy children in your life and give to those who are not. I simply ask you to give thanks (and hug) the healthy children in your life and pray for those who are not.

Love to you all!

Cindy

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

2009-12-22T19:09:00.006-06:00

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!

Day 146: We reached 100!

2009-12-20T09:51:00.004-06:00

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

2009-12-11T10:45:00.001-06:00

http://join.marrow.org/ajchristmaswish

http://join.marrow.org/ajchristmaswish

Day 134:Getting Closer

2009-12-08T20:33:00.005-06:00

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

2009-11-26T18:58:00.002-06:00

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

2009-11-19T09:37:00.005-06:00

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.

Day 100 - Yahooey!

2009-11-04T19:23:00.007-06:00

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!

Day 99: Hickman is gone

2009-11-03T07:22:00.002-06:00

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

2009-11-01T20:34:00.003-06:00

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

2009-10-27T20:19:00.004-05:00

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.

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

Day 83: Slow and Steady

2009-10-18T13:04:00.002-05:00

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

2009-10-06T19:34:00.004-05:00

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

2009-09-30T19:21:00.003-05:00

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.

Day 54-56:home sweet home

2009-09-21T19:34:00.014-05:00

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

2009-09-19T08:29:00.002-05:00

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!

Day 50 - The Big News

2009-09-15T19:26:00.004-05:00

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!!!

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

2009-09-12T21:28:00.008-05:00

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

2009-09-07T23:05:00.002-05:00

A great night watching ball.

Day 42: Happy Labor Day

2009-09-07T18:33:00.003-05:00

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!

2009-09-05T13:47:00.006-05:00

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

2009-09-03T10:06:00.002-05:00

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

2009-08-30T13:35:00.004-05:00

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.

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

Day 32: 99%

2009-08-28T18:23:00.004-05:00

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"

2009-08-25T19:28:00.004-05:00

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

2009-08-24T20:37:00.005-05:00

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

2009-08-22T18:07:00.004-05:00

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

2009-08-20T10:30:00.012-05:00

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

2009-08-18T23:02:00.003-05:00

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)

2009-08-17T09:54:00.003-05:00

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

2009-08-16T21:04:00.007-05:00

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

2009-08-15T11:45:00.004-05:00

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

2009-08-13T17:28:00.006-05:00

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

2009-08-12T05:47:00.002-05:00

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

-Greg

Day 15: Off to school (Part 2)

2009-08-11T20:06:00.004-05:00

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

2009-08-11T19:32:00.005-05:00

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

2009-08-10T19:37:00.008-05:00

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)

2009-08-09T10:21:00.004-05:00

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

2009-08-08T12:59:00.003-05:00

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:

Day 10: First Crazy Hat

2009-08-07T10:00:00.003-05:00

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

2009-08-05T22:17:00.005-05:00

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

2009-08-05T08:55:00.004-05:00

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

2009-08-04T07:43:00.003-05:00

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

2009-08-02T11:46:00.005-05:00

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

FYI

2009-07-31T09:38:00.004-05:00

AJ just got his first two letters at the hospital. One was from his buddy, Ethan. The other from his friend, Claire. He was very excited. To tell you the truth we didn't know he could get mail here. Here is the address just in case (we also check the apartment mailbox every few days)...

AJ Revera

Room 6305

Children's Hospital at Vanderbilt

2200 Children's Way

Nashville, TN 37232

Day +3: Not Day +4

2009-07-30T21:47:00.002-05:00

All day today AJ kept referring to today as day 4. It isn't. When I asked for a title of the blog tonight, he again misidentified the day. So today's title is officially "Not Day +4."

Today was another good day. AJ is doing so well drinking fluids on his own that the Doctor let him get off the IV for 6 hours. He took to walking the halls again. The Killians sent AJ a mini basketball hoop. AJ was challenging everyone to his own version of HORSE (a version in which the opponent has to stand far away from the hoop and AJ gets to stand under it). Little did AJ know that Mr. Tim has one in his office and somewhere along the way I became an expert at the long throw into a mini hoop.

Upon observing AJ circulating the halls this afternoon (26 laps) Dr. Frangoul asked Cindy if AJ knew he was three days post a bone marrow transplant. Needless to say, all are very happy at his progress.

This evening, shortly after supper arrived, AJ again became nauseous following his second dose of Methotrexate. But after a couple of hours (and some Zofran) it passed.

AJ recounted to me the adventures we had in June. From Cocoa Beach to Seattle, AJ noted we got to see the whole country from cars and planes in one week. He talked about flying over Mt. St. Helens in a helicopter, paused and said:

"You know dad, I have a great life."

Talk about perspective. (Yes, Cindy and I teared up, AGAIN).

-Greg

Day +2: Good Luck to My New Friend

2009-07-29T20:51:00.008-05:00

This morning I had the dressing changed for my central line. It was very painful. But it is necessary to keep it clean. They have to do it once a week.

This is my little buddy Ian. He had a transplant on July 4th. Tomorrow he gets to leave the hospital because he has been doing so well. Good luck to my new friend.

The doctors want me to walk every day to get exercise. Today while walking, I raced my new car with some of my friends from the floor. And look at the great hat Mom and Dad got me --Go Canes!

This evening I got to talk to Anna on the web camera over the Internet. It was way cool! Thank you Anna, Mr. Mike and Ms. Jackie! I can't wait to talk to more friends soon.

When we were done on the camera, my nurse Karie got me some Ramen noodles. They were yummy. (Don't worry the doctor said it was OK).

-AJ

Nashville Address

2009-07-29T14:10:00.002-05:00

Our Nashville apartment address is:

4141 Woodlawn Drive #66
Nashville, TN 37205

Day +2: Medical Update

2009-07-29T10:00:00.003-05:00

First, a shout out to my sister-in-law, Denice, who missed Colby's (her son's) birthday on Monday to be the shuttle service and personal nurse/play buddy for Austin. We love you Denice.

I thought some of you might appreciate a medical update on AJ. The chemo drugs AJ took last week all did their jobs. That is, they emptied out his marrow to a large extent and wiped out his immune system so as to not fight off Austin's marrow. AJ literally has close to zero white blood cells right now. He will continue to lack an immune system until Austin's marrow finds its way into AJ's bones and begins making new white blood cells. The Doctors said that usually takes 14-18 days.

Yesterday, AJ had a dose of Methotrexate. He'll have this drug four times, days +1, +3, +6 and +11. Methotrexate is another type of chemo drug that namely kills off rapidly multiplying T-Cells. T-Cells are "programmable" white blood cells. Each T-Cell carries around programing to fight off different foreign invaders. (For example when we get a flu vaccine, we are programming certain T-Cells to recognize the virus as foreign). When a T-Cell finds a foreign cell it is programed to fend off, it begins to rapidly multiply.

Right now AJ has some of Austin's T-Cells in his body. We don't want the T-Cells that are programmed to fight off AJ's tissues (and causing what is called Graft vs Host Disease). So the Methotrexate is to kill off the T-Cells that have become activated.

-Greg

Day +1: Thanks

2009-07-28T21:19:00.005-05:00

First, I would like to thank my "identical brother," Austin, for helping me. Thank you to Ryan for being Jack's big brother and looking after everything at home.

Thank you to everyone else for all the gifts and prayers you have sent me. Today I felt really good. I got to spend some time with Austin again. Then I opened some great gifts. I got some new hats for my hat collection from everybody at my dad's work, and a few from mommy's friends. I even got a huge comic book. Thank you, James. It is all Calvin and Hobbes. They are so funny.

After that I played some board games and dominoes with mom and dad. Thank you to the McGarry family for sending me those. Thank you, Aunt Vanessa for the big balloons. They arrived today. And thank you for all the hats to everyone. We will start having a hat of the day soon, but for now, I still have my hair.

In the evening I watched Pirates of the Caribbean with mom and dad. I don't know why they had to ruin a perfectly good pirate movie with kissing at the end. Yuk!

Hoping for another good day tomorrow.

Love,
AJ

Day 0: A New Beginning

2009-07-27T23:31:00.003-05:00

Today was a new beginning for AJ. For the rest of his life, he will celebrate this day as a second birthday of sorts. A second gift of life. The gravity of the events was not lost on him. When it was time for Austin to leave this afternoon and return to the apartment, AJ broke down, hugged Austin and thanked him for his marrow. Austin smiled, ever appreciative of the affection of his older brother. Austin told AJ that he would miss him and hoped he would be able to come home soon. Cindy and I are truly blessed.

Day 0: Reunion

2009-07-27T14:28:00.002-05:00

...a brother is born for adversity. Proverbs 17:17

Both are doing well and watching a movie.

-Greg

Day 0: Transplant

2009-07-27T12:54:00.006-05:00

Austin in recovery, this was right after he got out of surgery:

Austin's marrow...tagged for AJ:

Transplant begins:

More photos and updates later. Everyone is doing well.

-Greg

Day 0: Brothers

2009-07-27T11:42:00.000-05:00

Austin did great this morning and is talking up a storm in recovery. The doctors are very happy with the volume of marrow they were able to get. The transplant into AJ should start soon. We will follow up later.

-Greg
Sent from my Verizon Wireless BlackBerry

Day -1: Austin Arrives

2009-07-26T22:53:00.003-05:00

Today really was a day of rest. We watched movies and played games. AJ was feeling ok for much of the day, but was still having periods where he felt awful. Over the past couple hours he has started running a fever and that has us concerned. They will monitor the fever every half hour or so through the night.

Denice brought Austin up from Madison late this afternoon. I went back to the apartment and spent some good Daddy time with him before giving him a bath and putting him to bed. He is such a brave little guy also. He is very excited to be helping out his big brother. I read to him some of the special prayers people have sent. Cindy and I have truly been touched at the number of people and churches that have been praying for our little guys and our family.

Today, Ryan helped Austin pack his bag for the hospital. Apparently the two of them had emotional goodbye to one another. I don't think Austin and Ryan have ever spent a night apart from one another.

-Greg

Day -1: A Day of Rest

2009-07-26T09:34:00.010-05:00

Yesterday was a pretty rough day on the little guy. He was sick most of the day. He felt a little better mid-day when they took him off the ATG, but by evening was nauseous again.

Yesterday AJ received care packages from all over the country. He received hats from Miami to Seattle. Some of them are quite outlandish. We'll post photos of them when he starts wearing them. For now, he is still sporting the HAWK.

AJ put a big smile on his face with a couple of special gifts. Miami's head coach, Randy Shannon sent AJ a Canes football poster that is signed: "AJ, you are in our thoughts and prayer. Best wishes! Go Canes! - Randy Shannon."

AJ also received a great big box of stuff from his favorite race car driver, Jimmy Johnson. This included an autographed poster, shirts and hats, a trash bin and a great big flag. Thanks John for making that call.

Finally, the Miami Dolphins sent a care box to both AJ and Austin, including t-shirts and hats. Thanks Dan for coordinating that.

Thank you to our special friends out there who made all this happen. It really perked AJ up on a otherwise yucky day. And he still has a couple more boxes to do.

Today, is, officially a day of rest. AJ hasn't eaten a thing in three days and is very lethargic. His blood counts were very low this morning so they are going to give him both platelets and red blood today. This will be his first time receiving red blood.

For the first time in three days, AJ had something to eat. Two bites of a pancake. But it gave him a little strength, so we are going to try and play some board games.

This afternoon, Aunt Denice will bring Austin up to Nashville and he will spend the night at the apartment with Aunt Denice before his procedure tomorrow morning. Austin is very excited about his ability to help his big brother. Please say an extra prayer tonight for Austin.

-Greg

Day -2 -- Roller Coaster

2009-07-25T10:37:00.006-05:00

After not getting to sleep until around 2 am, AJ was up early and sick. They were able to give him some medicine to combat the nausea and control his upset belly. It also knocked him out for a couple more hours. He is on his final round of ATG this morning, and is battling with hives and a fever. AJ is currently awake and feeling okay for the moment - so he is taking advantage of it and playing Risk with Dad and from the sounds of it, they have quite the battle on their hands. This whole process is a roller coaster!!!!!

A special thank you to Denice, Billy, Randy, Daniel, Tim, and PopPop who are moving our things to our apartment in Nashville even as I type. It is a huge relief knowing this is being taken care of - WE LOVE YOU GUYS!!!!

CRAZY HAT UPDATE - Thank you to everyone who has sent AJ a crazy hat - and we mean crazy. Once he loses his hair (probably a little more than a week from now) we are going to start with a crazy hat of the day. We have gotten so many hats that it will be fun to show them off. We are beginning to overflow with hats. If you already have one, please send it, but no need to buy anymore. With all that we have and all that are coming, I think his head is covered!

Love to you all - and keep praying.

Cindy

Day -3: A Good Night

2009-07-25T00:46:00.005-05:00

We've gotten our days and nights a bit turned around. AJ had a better day today (Friday). The side effects were not as severe and he didn't sleep as much. Still, he didn't really wake until 6:00pm. His platelets were low so he was also transfused today with platelets between the ATG and Cytoxin. This evening he was still quite nauseous, but in good spirits. He hasn't eaten a thing in two days but the doctors have told us that this is normal.

Tomorrow marks the end of his chemo treatments. Sunday is, aptly, a day of rest and he will not receive any chemo. This allows his body to rid itself of the toxins so they don't interfere with Austin's marrow when it is transplanted on Monday. Although this will give us a bit of rest, the doctors have warned that the post transplant period will continue to be a long roller coaster ride of highs and lows.

That being said, it has been hard to schedule any particular time for AJ to try and video chat with his friends. We have him set up on Skype, which we have been using to chat with his brothers. So if you see the icon to the menu on the right (below the photos of Seattle) indicating he is online, than he can chat otherwise he can't. Please understand (and explain to the kids) that he may need to abruptly end calls. So we'll give it a try. If it works, great, if not....we gave it a try.

One last thing, if you search for him on Skype, be warned he is the AJ Revera at Vanderbilt Children's. If you choose the other, you may end up having a video call with Pop-Pop.

-Greg

Day -3: Feeling a Little Better

2009-07-25T00:08:00.002-05:00

Hi everyone. I am feeling better tonight. Thank you for all the prayers and comments and nice things you have gotten for me. My dad will do a post and let my friends know how to talk to me over the video phone. Bye for now.

-AJ

Day -3: Good Morning

2009-07-24T06:20:00.005-05:00

Yesterday ended up being a yucky day. Although AJ felt better for about an hour or so mid morning, it was short lived. He had hives, chills, fever and nausea all day. He was kept on benadryl and some other meds that kept him quite woozy. The ATG treatment ran all day. Once he was off the treatment the side effects started to go away. All of this is to be expected. It was however, very taxing. AJ had the second round of Cytoxin last night and again had no immediate adverse side effects to it. In fact around 6:00pm last night AJ woke up, smiled and said: "Good Morning." He saw that it was 6:00 on the wall clock and thought it was 6:00am. His brothers (and Grandma and Pop-Pop) sent him a card and some balloons. The balloons were tied to three little stuffed monkeys. That really perked his spirits as did all the encouraging words people have left in their comments. We read each one of them to him last night. After which he stated: "I have the greatest friends in the world" and he does.

Day -4: ATG

2009-07-23T10:02:00.002-05:00

10AM

AJ started ATG (anti-thymocye globulin) this morning. He'll be on a slow drip for 6 hours. The ATG will wipe out the t-lymphocytes in his body. T-Cells are the body's programmable immune system that would normally fight off viruses and foreign tissues. Wiping out the t-cell system will help allow AJ to accept Austin's marrow. Without the ATG, the t-cells would immediately recognize Austin's cells as foreign and destroy them.

Because of the propensity of the ATG to cause an allergic reaction, AJ was pre-medicated this morning with steroids and antihistamine. So he is napping now. He is also running a slight fever, has body chills, nausea and bad stomach cramps. He has been fairly sick this past hour. The doctors have been in and are giving him some additional drugs to reduce these side effects.

He will get another round of the chemo drug he had yesterday, cytoxin, this afternoon. Cytoxin kills any fast growing cells in the body, such as marrow. The purpose of the Cytoxin is to destroy the remaining bad marrow and make room for Austin's good marrow.

We'll update later today when we can.

-Greg

Day -5 - First Round of Chemo

2009-07-22T19:56:00.008-05:00

I am doing good. I have started the medicine that will make my hair fallout and I am getting a lot of water in me. It is making me have to go to the bathroom A LOT! My nurse Caroline is going to wake me up every 2 hours through the night to make sure I use the bathroom even more. They said the medicine might make me feel sick or my stomach upset but so far I feel fine. My strength stone is keeping me strong.

We spent the day playing games on my laptop and hanging out. We played in the playroom a little while. I did 104 laps around the unit floor - they said 26 laps = 1 mile, so did 4 miles. Tomorrow I am going to walk some more.

Thank you to every one who is sending me messages and prayers. It makes me happy every time I read one.

PS- My webcam is set up and working. I talked with my brothers and grandparents this morning. It is very cool. Let me know if you want to webchat with me.

Day -6: Admission

2009-07-21T21:08:00.006-05:00

What a long day today was! At about 4:00am Cindy's mom and my parents arrived at the house to watch Ryan, Austin and Jack. We left soon after for Vandy. AJ's surgery was scheduled for 7:30. It was to put in place a Hickman line. The Hickman is a central catheter line that is put through the chest into a vein and then snaked to the atrium of the heart. Though this line, AJ will receive his chemo, IV fluids, have routine blood draws, and eventually Austin's bone marrow.

The surgery went perfectly and I entertained the other parents in the waiting room when I nodded off. The nurse called "REVERA" I jumped to my feet, only to realize my legs had fallen asleep. Needless to say, I took one step and nearly fell on my face to the amusement of all around me.

AJ was in the recovery room by 9:00. There we waited for a room to be made available on the pediatric transplant ward. We waited eight hours! However, we passed the time playing cards with AJ. We were warned that the Hickman might give AJ nausea and cause discomfort but as always he was a trooper. By 10:00am he was telling the nurse that his pain was at a negative 2. I was able to leave for an hour to donate blood to be banked for Austin for use post-procedure on Monday. Despite repeated promises that AJ's room would be ready shortly, it wasn't until 5:00 that we got in the room. AJ got an assortment of pills this evening to help him fight off infections. The chemo won't be started until tomorrow. He is in great spirits and was quite entertaining to all the nurses, all of whom love his hair. Cindy and I remain exhausted, but we decorated his room with posters and photos of his friends and family.

AJ is in room 6305. Please don't send flowers to him, live plants are not allowed on the ward.

Thank you to everyone for all the prayers being sent our way.

-Greg

P.S. You'll note the title of today's post is Day -6. Day 0 is transplant day.

The Big Reveal

2009-07-16T18:54:00.004-05:00

I just wanted to say thank you to everyone for all the cards and letters and hats you are sending. The silly ones are the best! I also like all the ideas you posted about my hair. Some of them were just too funny. So.........HERE IT IS.......

YELLOW MOHAWK!!!!!

More Tests and Dental Work

2009-07-15T16:09:00.001-05:00

Look for AJ’s hair decision in the coming days, we’ll be sure to post photos. Yesterday we went to Nashville for some more health screening tests for AJ and also Austin. Austin was a real trooper and didn’t flinch even though they had to stick him three times, drawing blood twice and performing a TB test. We explained to Austin his role in all this and he couldn’t have been happier with the news that he gets to help his big brother get better. He also delighted in informing Ryan.

Unfortunately, it was a very long day and emotionally trying at times as we realize what we are fast approaching. Thankfully we were again Blessed to meet in the waiting room a young man who at the age of 6 was diagnosed with aplastic anemia and had a bone marrow transplant with his younger sister being the donor. He was visiting the clinic for his twelfth annual check-up and was the epitome of good health. His mother was with him and talked a long time with Cindy.

Today, AJ had to go back to the dentist. At his checkup the other day, Dr. Beitel found a few minor spots on one of his teeth. Normally, nothing would be done about them since they were on a baby tooth. However, because any pockets of bacteria are of concern, the decision was made to clean and the small cavity and fill the tooth. Since this involved dental work (and the proclivity of gums to bleed), AJ received platelets yesterday and antibiotics this morning. Special thanks to Dr. Beitel who at the last minute was juggling his schedule to help AJ.

-Greg

MY HAIR!!!!!!

2009-07-07T20:09:00.004-05:00

I just found out that one of the medicines I will take will make me lose my hair - I AM GOING TO BE BALD! Before it falls out, I want to do something CRAZY with my hair. Will you help me figure out what I should do? Maybe a mohawk? Maybe dyeing it my favorite color, yellow? I would love to get suggestions from you.

I will also be wearing a lot of hats. I want funny hats, crazy hats. Let me know if you would like to send me a silly hat.

Thanks for your help,

PS - it will eventually grow back, whew!

Brief Update

2009-07-06T12:58:00.002-05:00

The trip to Nashville last week went well. It was a long day of testing. AJ, as always, was a champ. His RBC and hemoglobin levels were low and they considered doing a red blood transfusion, which he has never needed before. However, because he was full of energy the doctor decided the transfusion wasn't necessary.

AJ had various blood, kidney, heart and lung tests done in addition to the new marrow biopsy. Thus far the results of all the tests, including the new biopsy, are consistent with moving forward with the transplant later this month (with AJ being admitted to the hospital on the 21st).

We found an apartment to live at while we are up there, although it won't be available until August 7th. So we'll be living at a hotel ... and more likely... the hospital, until then.

Thank you everyone for all the wonderful comments. AJ reads them daily, although he has been a bit shy about commenting back.

Medical Update

2009-06-26T20:51:00.014-05:00

After much prayer and a consultation with Seattle (and their opinion that there was no medical advantage to conducting the procedure there rather than Nashville), we've decided to have the procedure done at Vanderbilt Children's in Nashville.

Over the past month AJ's blood counts have continued to drop so that it is now time to move forward with the transplant.

AJ will have to go through a thorough work-up over the next month to make sure he doesn't have any hidden infections (because he will be without an immune system for a few weeks).

The plan is for him to have a new marrow biopsy on July 1st, along with obtaining baselines for all his major organs. On the 14th he'll have another viral screening (to make sure he hasn't been exposed to anything). They will also do an overall health inspection of Austin on the 14th to make sure he doesn't have any infections (since they would end up getting transferred). Following these screens AJ will be on "lock down" at home (with no visitors) as to not expose him to anything before his procedures begin. Assuming nobody is sick, they will admit AJ to the hospital sometime during the week of July 20. He will receive a Hickman line (a central line) then begin chemo the following day. After 5 days of chemo they will do the transplant. The day of the transplant becomes day 0.

The marrow is taken from Austin via a needle and is an out-patient procedure. (Austin is still unaware of this and we will be giving him information as appropriate and in terms for a 5 year old to understand). The marrow gets dripped into AJ via an IV line.

It will take up to 28 days to tell if the transplant worked. About that same time, (when his white blood cells recover to an acceptable level) they will let him out of the hospital, but he will have to stay sheltered and within 20 minutes of the hospital until at least the 100 day mark. If all goes well, he'll be allowed to come back home after 100 days.

During this time we will be using the website to send updates on his progress. Please take time often to send AJ messages as he looks so forward to receiving them. Please feel free to send him funny stories or even jokes (the cornier the better) and tell him about the things going on in your world - this will be an important part to keeping his spirits up, keeping him in touch with his family and his friends, and alleviating any feelings of isolation.

As always, please continue to pray for AJ's recovery, for the family's strength, and for the doctors' wisdom.

(Some people have made us aware of problems with posting comments. We think we have corrected those issues. If you some reason you are have difficulty posting please email or call Greg and he will walk you through it.)

Trips

2009-06-22T19:10:00.012-05:00

It has been a crazy two weeks. Our trip to Florida was great! The Kennedy Space Center was awesome. We saw the shuttle on the launch pad. And I loved playing in the waves at the beach.

Yesterday we returned from Seattle. We visited the Seattle Children's Hospital. We ate lunch at SkyCity Restaurant at the top of the Space Needle. The restaurant spins and we could see all of Seattle. We ate dinner one night with Mrs. Mary Jo and Mr. David - friends of my Grandma. Every day I swam in the pool with Mom and Dad, and even went in the hot tub.

My favorite part of the trip was the helicopter ride we took at Mt. St. Helens. I got to ride in the front with the pilot. We saw the lava dome, inside the crater, and lots of ash in the river. The pilot said the ash is 150 feet deep in some spots. It was my dream to ride in a helicopter over an active volcano and now my Daddy made it come true. We also saw Mt. Rainier - it was HUGE!

(inside the crater of Mt. St. Helens)

On our flight home, we could see Mt. Rainier, Mt. Hood, and Mt. Adams. It was a wonderful trip!

(Mt. Rainier)

(Mt. Adams -front, Mt Hood - back)

Mom and Dad will update soon with details about my health.

-AJ

P.S. In case you were wondering, my team, the White Sox won the tournament! I am so proud of them!

Cocoa Beach

2009-06-13T10:53:00.000-05:00

Launch scrubbed. Beach rocks!!

-AJ
Sent from my Verizon Wireless BlackBerry

A Blastoff Weekend Ahead

2009-06-11T14:42:00.006-05:00

This weekend we are going to head out of town and go to Florida. We are going to see the Space Shuttle Endeavor blast off from NASA. We will get to see it up close!

We will leave tonight. The launch is on Saturday at 7:17AM. I hope the weather is nice and dry so the launch happens.

This will be the best weekend ever!!!

-AJ

P.S. It is a secret so don't tell my brothers! I'll try to post a photo of the launch Saturday morning.

Quick Update

2009-06-09T09:15:00.002-05:00

AJ had a CBC yesterday. His numbers are down and he will receive platelets tomorrow morning here in Huntsville. He is feeling well, just a bit tired. Greg, AJ, and I will be flying to Seattle next Wednesday for a consultation with the transplant team at Seattle Children's. We are praying that the trip will give us clarity in the choice between SCCA and Vanderbilt Children's. We are also looking forward to spending some time with our big man.

-Cindy

PS - The White Sox won in an amazing come from behind, extra inning thriller to stay 2-0 in the tournament. Another game tonight! GO WHITE SOX!!!!

Baseball Blast Ahead!

2009-06-05T13:50:00.004-05:00

Tomorrow begins the big baseball explosion! Ryan and Austin have their last game of the season. My team will begin the tournament. We are the #1 seed. Our schedule will be crazy because you don't know when your next game will be until you win or lose. I am so excited! We will be at Palmer Park all weekend! GO WHITE SOX!

I am feeling great and have no bleeding symptoms. I even lost a tooth this week with no problems. And I got 5 bucks! I go for a blood check on Monday and will probably need platelets one day next week.

Thanks for sending me messages. I love reading them. And I am still dying to know who Farmer G is. All of your messages make me so happy. A big thank you to Mrs. Parker, Dr. Ricci, and the teachers at Horizon who helped fill my package. I really love all the books, and my favorite thing is the yellow blanket. I am going to save it all and take it to the hospital with me when I go. It was a big surprise.

-AJ

Farmer G

2009-06-02T14:01:00.000-05:00

Who is Farmer G? I have been wondering for a long time. I will help you with your crops if you will tell me who you are.
-AJ
PS - I will feed your chickens too!

What a Weekend!

2009-05-31T18:20:00.000-05:00

It has been a very busy week. Thursday was my last day of school. That night my baseball team won the regular season championship. We were 15 - 1. I'm the dugout coach because I can't play right now. We got to throw water balloons at the coaches to celebrate. Then Coach Don took us to Sonic for ice cream.

Friday was a yucky day. The good news is I got platelets and am feeling much better now.

Saturday was my team party at Rosie's. It was the best team party ever. I got a really cool trophy. Then my brothers and I spent the rest of the weekend at Grammy's house. Once we got home we let our butterflies go. They laid eggs so maybe we will have more butterflies soon!

-AJ

P.S. I go back to the doctor next Monday.

Test results

2009-05-27T10:36:00.000-05:00

Hey everyone! We got the results on the final genetic test we were wanting for. AJ's CAMT results were normal - meaning he does not have CAMT. This clears the way for Austin to be his donor, as well as easing our fears that one of the other boys could develop symptoms. This is great news! Once again, our prayers are answered - God is good! AJ goes for a blood check on Friday morning, so we will let you know how that goes. Please continue to pray for AJ.

-Cindy

Memorial Day Weekend

2009-05-26T20:33:00.000-05:00

I had a great weekend. We didn't go to the Balloon Glow because it rained. Instead we went bowling with our cousins. I scored 95 and Jack scored 105. He beat everyone(he used the ramp and I helped him set it up).

Our butterflies came out of their chrysalids too. We have 20 butterflies. We will release half of them soon and hope the others will lay eggs.

Today I went to the doctor. My platelet count was 20,000. I might need to get platelets before the end of the week. I hope it is not on Thursday because that is the day of my class party. It is the last week of school. Tomorrow is Board Game Day. I am bringing UNO because Mrs. Parker said card games are okay, too.

-AJ

P.S. A Balloon Glow is when they inflate and light up all the hot air balloons at night at a balloon festival.

My First Post

2009-05-23T09:54:00.000-05:00

I got platelets a few days ago and now I feel great! Today we are going to have some family pictures done. We might have a game night or we might go to the Balloon Glow. I am going to have a great day!

-AJ

AJ's Story

2009-05-23T01:33:00.000-05:00

About eight weeks ago, after playing in the yard with his cousins and uncle, we noticed that AJ was bruising very easily and was overly tired. The following morning we took AJ to the doctor and found that his platelet count was extremely low. 22,000 when normal is 150,000. It turned out he also had a strep infection and AJ's doctor was hopeful that the low platelets were secondary to the strep infection. After a few days of antibiotics, the strep infection was cleared. However, the platelet count did not go up.

A few days later we traveled with AJ to Vanderbilt Children's Hospital in Nashville. Some tests were run and a bone marrow biopsy was conducted. AJ was very brave.

After the biopsy procedure the anesthesia medications left him a little wooooozy..

So on the way home we got a BIG lunch at Buca. And AJ got his strength back!

The journey back and forth to Nashville is a bit long, so AJ was very happy when he was back in sweet home Alabama.

A few days later we learned that AJ's bone marrow was lacking megakaryocytes (the cells that make platelets) and was starting to show decreases in other counts as well. The doctors diagnosed him with Aplastic Anemia, a condition where the bone marrow, or as we call it with AJ, the blood factories, just aren't working right.

They have continued to try to look for the cause of the condition but have told us that most often it is an auto immune condition and no definitive cause is found. We were advised that AJ would need a bone marrow transplant. The whole family returned to Nashville so that we could each have HLA typing to determine if any of us were a marrow match for AJ.

After more days of waiting, we learned that Austin was a match for AJ. (Austin does not know this yet and we do not plan on telling him until just before the procedure).

AJ has had four transfusions of platelets over the past several weeks and will continue to receive a transfusion every 7-10 days. We have some time before the transplant, but it is not certain exactly when it will take place. Or for that matter where, as we are talking to doctors in both Nashville and Seattle.

We will be using this blog to post updates on AJ's progress. This site will also serve as a place where AJ can share his story with his family and friends. And where family and friends can comment back to AJ and the family directly.

We have always told the boys that brothers take care of brothers. This adventure of ours will give great roles and responsibilities to each of the boys and to both of us. Not roles that were sought, but as is often the case in life, ones that were bestowed. We will stick it out, see it through, and emerge victorious and stronger having endured. We are heartened and strengthened by the overwhelming number of family, friends, acquaintances and strangers who have stepped up and joined us in this journey.

Thank you for being part of our family's team!

-Greg and Cindy

Teamwork makes the dream work!