FYI

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

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

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

Our Nashville apartment address is:

4141 Woodlawn Drive #66
Nashville, TN 37205

Day +2: Medical Update

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

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

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

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

Both are doing well and watching a movie.

-Greg

Day 0: Transplant

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

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

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

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

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

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

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

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

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

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.

AJ

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

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

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

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!!!!!!

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,

AJ

PS - it will eventually grow back, whew!

Brief Update

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.