Jacks new port was accessed today, Jack was not so happy about this since he is still swollen and sore from Thursdays surgery. We were able to get labs with no problem and now he is infusing. We are back on the rigorous chemo protocol 5 drugs in 2 days, in a small room from 8am-5pm.
Todays labs will really give us a good idea how well this experimental therapy is working, we know his titers are going down but we need to see them continue to go down, and significantly. We will have results in 2 weeks. Jack continues to persevere through all of this. A trip to the Disney Store is in order.
Today we welcome back into our lives Joey and Tyler. They continue to film Jacks portion of Boys With Bigger Hearts (BWBH). The cameras rolling at the hospital made for some real live Jack footage and what it is like for us to fight a rare disease, which not many people understand, experience, or even think about. It’s eye opening. The powerful piece to having yourself filmed in a documentary is that there is no script, make-up crew, acting, or cuts…it’s what we do and what will be shared!