Time

" A grain, a second...A memory...a lifetime..."

What do you do when when the grains of time slowly slip through the worn cracks of your hands? Or the sad winds of loss call to you like a haunting memory? The voyage through the desert is a long one that many do not last but grateful are those that do...We have been on our caravan through this horrible desert for quite a while now and as we finish this spiritual safari we are preparing for our next trip in the next desert. The desert of loneliness as one our team members, AA prepares for a new and wonderful journey as one of God's Angel and Saints. We have to be happy for him because he will finally have some peace in terms of his health. He will be able to protect us from heaven as we continue to honor his time with us through our lives. He always was the reason why we lived and will continue to be as he goes on to the next phase of life, because we hope to be with him one day as we all see the sun set in the desert dunes together.

This weekend  sure has been an eventful one. I am going to start with Sunday's events...AA has been doing better at home...He has been eating and drinking while speaking a lot more. He said some new words such as, "no More", "Blue", "Orange Juice"...So happy to see him have some progress and he even stood up...Amazing given that his body is really taking a beating from this horrible monster called AT/RT...We wanted to thank Fr. Jack from Our Lady of Fatima Roman Catholic Church for coming by and giving us all a special blessing. AA was happy to see Beemer too. Beemer was very overprotective of him and laid right by his feet as he protected his buddy. AA sat up on his high chair this weekend for at least four hours which was the longest he has ever sat up in months. 
Although we are in hospice care right now we still feel like we are still at Sloan because Dr. Lightner calls every other day to see how we are. He has been in pain at times, we have had to give him pain meds that work well for him...at this point he doesn't need hard core pain meds yet so we are happy that Dilaudid works well for him....We also want to thank Michelle's parents for really helping us out with breakfast, lunch and dinner everyday...it has really taken a load off of our pockets and time...we are able to spend all day with AA as a result... We were also hoping to take AA out more being that he is not neutropenic. As we were heading out to take him on a walk he started to shake his hands and head slightly. We decided to bring him in and put him on the bed and Michelle thought that he might be having a seizure and then his mouth started to twitch, she was right. She gave him two doses of anti seizure medicine but that didn't work.  As a result we had to call 911 and the FDNY and EMS came to our house and helped break AA's seizure with some Valium. We then rushed to Sloan. We were surprised how calm Michelle was during this because she gave him the appropriate medicine and stabilized him.  Unfortunately, two dosages of Ativan did not work. We want to give a special thanks to Dr. Lightner (and her husband Chris) again who left her family to come see how AA was and ordered all the appropriate tests. She then went to have dinner with her family and then came back to spend time and observe him. After his seizure his right side was very weak (similar to stroke patients) but it resolved in hours as opposed to days, quicker than the Doctors thought. I am telling you, AA has made almost everyone in this hospital earn their salaries. All the doctors were surprised how quickly he got better.  AA was really scared for the first time  when the seizure started. He asked Mama and Dada to stay by his side because he knew something was going on. That really broke our hearts. To put more salt on our wound, the CT scan given to him last night showed that the brain was not bleeding but that the cancer has really spread like wild fire...given how bad the disease has spread the Doctors and we are totally amazed at how well he looks given the situation. They marvel at his willingness to fight.  This warrior was even given a high dose med for seizures that should of knocked him out but it didn't.  That dosage was equal to one pint of vodka for an adult and he was wide awake until 6am while we were falling asleep. On top of that, the dvd player in the room didn't work and that made matters worse.. All he did was slap us silly in the face and tell us to wake up to put the Chugginton dvd on. He obviously didn't understand that it was broken...Yesterday was the second time, I had to just walk away for a couple of minutes..I was so mad at this whole crappy situation for our boy, but never at him he is the light of our lives and souls. 
The docs were also nice enough to let us stay last night and gave us the option to stay for another day but we want to get home ASAP... Our hospice nurse Kristi is amazing. She rushed to our home once we called about the seizure and flew by our side as we went through this ordeal. She went with us to the hospital and left the hospital at almost 11:30. She really has been a great emotional and medical help. We also wanted to thank Michelle's parents, sister, my aunt Linda, Uncle Mario and my mom for coming by our side yesterday. Thanks for the support. Until next time!!!
AA, Roi & Michelle