September 2010 - A Dream Come True

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

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"

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!

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

AJPALOOZA!

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,

AJ

Day 365: ONE YEAR!

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

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.

For the Best Healthcare in Your Hometown .. Count on Us...

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Day 318: Almost there

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

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,

AJ

Day 283: It's Been a Long Time

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.

AJ

Day 239 - Today is a bittersweet day

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....

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