Winter is here!

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The Stony Brook School team with their newest player # 11 AJ Sisa!

The Stony Brook School team with their newest player # 11 AJ Sisa!

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Winter is finally starting to show its face. AJ has never been a fan of the cold or any outside activity that involves snow, so the winter has always been the time of year where we search the island for indoor fun. This year is a little harder since he is not allowed around many people. I think we have done a good job so far; we always manage to find something to do.

AJ has adjusted well to being home and is finally catching up with all his schoolwork. We have been hospital free for 6 weeks. At times, it feels like we just left and other times I feel like it was ages ago. If you take a look at my little superhero, you will say he looks great. He looks like he has bounced back perfectly. You are right; he does look amazing and is back to his old self for the most part. Most of the time I forget that he is still in the “crucial” period. He is almost half way to the 100 days post transplant period. I feel like once this period is over, I can officially breathe a little easier. AJ is due for a MRI at the end of January. I am crossing my fingers that it shows a stable tumor! At AJ’s last appointment, his lab work showed that he is doing great. His counts are recovering very quickly and may even be allowed back in school earlier then thought. This would be amazing and AJ will be so excited. He really misses being around his friends all day. Last weekend we went his best friend’s winter concert. I try not to get upset about everything he misses out on and focus on all the amazing opportunities that he gets instead!

One amazing organization that AJ got involved in is “Friends of Jaclyn”. This organization is specifically for brain tumor children. It matches a child up with a local college or High school sports team and that school “adopts” the child. The child gets to go to games, practices and really feel apart of the team. The Stony Brook School’s varsity basketball team adopted AJ. We went to there home game over the weekend and it was so much fun. AJ got a uniform along with lots of other school apparel. They introduced him in the beginning of the game and he was able to play and practice with the team. He had a blast and is very excited to be apart of the team.

Also this past weekend AJ got the clearance to go swimming. When AJ was first diagnosed, we found out that he will “miss” summer and will not be able to go swimming. I promised him the second he gets the clearance to go swimming; I would take him. This past weekend his two best friends were staying with us and I decided to surprise them and have a sleep over at a hotel with an indoor pool. The boys had a blast and it was amazing feeling to see my little fish in water again! He also got clearance to go ice-skating. If anyone remembers the beginning of our journey, AJ spent hours ice-skating the day before he was diagnosed with this evil villain. So seeing him back on the ice 8 months after being diagnosed was a great feeling! He fell a few times but got right back up and kept on going. I love how he never lets any of his weakness/pain stop him from doing what he loves.

The past few weeks have been filled with lots of appointments, smiles, struggles and laughter. Everyday is a new adventure and we always make sure we make the best of every situation.

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