This past Friday Jacob and I arrived home around 1AM in the morning. It was a long trip, but well worth it to be home for the weekend hanging out as a family. I’m so thankful that JT is a good little traveler.
Friday’s photopheresis treatment went much better. The port access was still horrific, but after we got through that, the rest went smooth with only one line occlusion. They were able to collect all three rounds and treat a much larger sample of the white blood cells with the light therapy. Medical technology is amazing.
Accessing Jacob’s port has been the most difficult part of this process. About a month ago Jacob started wanting to hit me during and briefly after access. It was almost like he went into this zone where he couldn’t calm himself down or get any self-control. I’m sure for everyone this seems like a crystal clear parenting issue and intervention, but for me it wasn’t. I have watched my son for so many years being poked and prodded and each time have held his hand, rubbed his head and told him to be brave. On many occasions I told him I would take his place if I could. When this behavior first started I mistakenly thought I don’t care if he hurts me, I want to hurt when he does and if this helps him, I’m OK with it. Thankfully, after a couple weeks of this, a voice of reason and wisdom stepped in – Brian. He helped me to see the light that we had to put an end to this. We took a proactive approach with a few unpleasant consequences lurking in the shadows. I’m so thrilled to tell you all that Jacob has responded like a champ.
On Monday afternoon, just before access, I started to get a little nervous inside. Jacob, however, was calm and relaxed, propped on the hospital bed with his little feet crossed. I took my cues from him and took a deep breath. Not one nurse was needed to hold him down and just before Ms. Janet put the needle in he whispered out loud, “Come Lord Jesus, carry my burdens. Come Lord Jesus, take away my anger.” Not one tear was shed, except for me that is. I was so proud of him and so touched by his faith and his strength.
Wednesday’s access went just a smoothly and afterwards the child life specialist, Amy, (whom we adore) made Jacob a really cool “Jacob’s Underwater Adventure” chart to put a sticker on each time he gets accessed. Once the chart is filled he will get a special prize. This certainly will help keep Jacob motivated, but I believe he is learning much deeper lessons about eternal rewards.
Today JT and I are at the hospital for his regular infusions. The port has been accessed and Jacob is quietly watching one of his favorite shows. It should be a mellow morning for us.
Tomorrow we have one more photopheresis treatment in the afternoon (should last about 4-5 hours) and then we’re heading home again. We both miss Brian and Justice terribly while we’re away. This is Brian’s last week of teaching school, so he will head with JT to Cincy next week. They are trying to set up our schedule so that it will be photophersis on M,W and Th morning, with regular infusions on Tues. This would give us a longer break at home – yeah! The tentative game plan is one more week then of photophersis at 3 times a week and then move to therapy 2 times a week for a month or two. It all depends on how JT responds to the treatment. We’re hoping to see some results by the end of this first month.
Thank you for your love and concern for us. We’re grateful for your prayers and support.