Speed bumps

Dealing with this disease is filled with so many ups and downs.

Our 4th of July weekend and this past weekend was fun and filled with seeing friends, meeting new people in our neighborhood, spending time with extended family, and meeting new people at church. Given it's summer and less people are sick, we've had a very active social life the past couple of weekends.

When we have good runs like that, we try to really be in the moment and enjoy it all... every sweet little moment. Moments like Sydney swimming at the pool and getting this cute little nose crinkle tan line because she's smiling so big and having so much fun. Moments like Jenson swinging on the swing at the park with a huge grin on his face. Moments like watching Jenson belly laugh as his grandparents and cousins make him giggle.

We are thankful that it appears Jenson's major issues with walking were prednisone withdrawal symptoms and not the super scary other options. Praise God for that blessing!

We also have speed bumps along the way even on the good weeks. On Friday, Jenson felt hot and we suspected a fever. We know the drill now all too well for fevers...immediate trip to the ER, his port being accessed, blood cultures to check for a staph infection, and antibiotics to prevent septic shock in case it is a staph infection. Not so good times.

It turned out to be a false alarm, but we could feel the stress level rise during the moments we're taking his temperature.

Another speed bump came tonight. When I gave him a bath tonight, it was obvious he's had another major skin outbreak from his disease on his head. It's all red with scabs in different places. This means the disease is continuing to flare up despite the chemo treatments. That's not good.

It's those moments that bring us back to reality of the battle going on within our sweet little boy's body. Right now the disease is continuing to leave battle wounds on little Jenson. It makes me so sad. I wish I could throw myself in the middle of the battle and save him, but I can't. All I can do is pray and love him.

We keep boldly asking God for a miracle of healing over our sweet little boy. We pray the battle would end.