Day 99: Hickman is gone

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

-Greg

Day 97: Halloween

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

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

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

-Greg

Day 92:Tests, Tests, Tests

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

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

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

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

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

AJ

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

Day 83: Slow and Steady

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

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

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

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

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

Chat again soon!

Cindy

Day 71: No Asterisks

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

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

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

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

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

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

Love to you all!

Cindy

Day 64: School and Games

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

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

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

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

AJ

Day 54-56:home sweet home

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