GOOD NEWS! August 9, 2013…We have reached the Maintenance Phase!

On August 9, 2013 by Michelle Love

BJ’s Interim Maintenance 2 phase ended on Aug 8. His counts were good Friday, August 9th morning, so he started the Maintenance phase with the scheduled spinal tap with Methotrexate, and then a Vincristine infusion while he was in the recovery room. It was a 6 1/2 hour day at the hospital. This phase will last until he is completely finished with active treatments…January 4, 2016. That’s no type-o…2016 is the date. He won’t get another bone marrow aspiration until the end, to check the MRD (minimum residual disease) in his marrow. Until then, he will take 6MP chemo pills every night until that date, along with a handful of other meds, with chemo infusions and spinal taps at different intervals. It’s a complicated pill box for sure.

We’re so thankful that BJ is through the rough stuff and is now in this phase. He’s looking healthy these days, although he’s got a way to go to rebuild his muscles and stamina. Ever since his diagnosis that interrupted his participation in the football season last year, BJ has wanted to be back on the field this fall. His doctor gave the OK for him to play football if he wanted to, as long as he wore a port protector, which is really marketed as a heart guard. I had bought one when BJ was about 8 years old, when he played baseball. My job was to sew a pocket into the inside of a compression under armour shirt, so the heart guard could be slipped inside it to protect the port in the right side of his chest.

The week of football conditioning training started up on Monday, July 22. He had two chemo treatments that morning, but he wanted to go out to the practice field and watch. On Tuesday, he wanted to go back out there. This time he tried to run with the boys and participate as much as his body would allow. He told me his legs felt like jello, and he rested intermittently, and did what he could for the full 2 hours of practice. When it was over, he felt exhilarated. He was all smiles, and so happy to be back out there. He wanted to go back the next day, and as sore as he was, he did it again. This time he did more. On Thursday, he made sure he was on the field again, and told me he wanted to play. Not knowing how fast he would be able to build back his strength, we had contemplated him going out there and practicing with everyone, and not actually playing in the games. The coaches were going to make BJ an assistant coach if BJ didn’t want an active player role on the team. BJ had other ideas. He wanted to be a real part of the team. I got his registration form processed that night.

From the first practice, BJ had not missed a single one. He even chose to participate in a 4 hour football camp on Saturday, Aug 3rd. It was his commitment, and he didn’t want to miss any practices. After his treatment on Friday the 9th, and not feeling good all weekend, he missed practice on Monday and Tuesday. The new combination of meds caused him to feel tired, have some nausea, heartburn, and his face was flushed and hot. He described it so intense that it made him feel overwhelmed. He’s feeling better today. His Prednisone dose ended yesterday, so most of those symptoms end with it.

The improvements that BJ has made from one practice to another are huge. If he could only do 3 wind sprints one day, then he’s doing 4 the next. He’s getting stronger, his hair is getting thicker, and his color is great….You’d never know by looking at him what hell he’s gone through in the past 11 months. I sit there and watch him at each practice in awe of him and the person he is at 12 years old…and I remember the darkness, the worry, the sickness, the hospital stays, the pain, the anger, the heartbreaks and the tears…but also I remember the real conversations between the two of us, hugs, more hugs, the countless “I love you’s”, the “this life would kill me if I didn’t have you”, the craziness that brought laughter, too many meals from chick-fil-a, and making the best out of the challenge we were handed …going through it every day, side by side, with great faith. We have some awesome friends and family that were right there with us too, and we couldn’t have done this without them, or without the prayers so many people have prayed for us each day. I also couldn’t have been there like I have for BJ without the continuous support from my coworkers at Medic, and I am forever grateful for them. Now we’re finally out of that tunnel that seemed so endless, the light is bright, and the smiles are wide. It feels like we have entered the world again! BJ is determined and motivated, he is thoughtful and thankful, easy-going, loving and loyal, sticks up for his mom and sister, and he loves God…He is an inspiration. He is strong. He is incredibly awesome, but that word does not do him justice. That’s my son. 🙂