Always Grateful to Hold Jack's Hand
Whew! We made it, our Thursday is almost over. Thursday's are our busiest day during the week and they always take extreme planning to get everyone picked up, driven here and there, then fed on top of all that. We had to forgoe Thai Kwon Do, because I couldn't get everyone home and dressed in time to be there and I didn't have an extra second to spare to gather their uniforms today.
We will spend our usual Thai Kwon Do time catching up on Bible Bowl tonight. I have such fond memories of Bible Bowl from when I was a kid. It is a nationwide program, a specific book from the Bible is the subject matter and kids starting in the 3rd grade can participate. My kids have enjoyed it this year, and my favorite part is sitting at the kitchen table with my three munchkins going over the scriptures verse by verse and them filling in the answer blanks on their study sheets. There is alot to be said for devotionals and kids, but there is nothing like being in the Word itself, not something written about the Word.
HBO therapy is going well for Jack. Just about 1 week down, 5 to go. Thanks to my friends this week who have sat with me in the waiting room to keep me company. Today, thanks to Judy, I found my way to the coffee kiosk. Judy is the queen of coffee and she can smell it miles away.
After Jack's HBO therapy today we went straight to the cancer center to have his medi-port accessed and flushed. A mediport is like a little quarter size disc, about 1/4 inches thick that was surgically placed under his skin before chemo started, the chemo is given through the port which has a plastic vein attached from the port then surgically attached to one of Jack's veins. It cuts down on the wear and tear or your own veins so they don't weaken through chemo or heavy access. We don't use it currently but it must be accessed and flushed out to keep it available and clean for future use. At some point it will be removed, it wont be soon enough according to Jack. Due to all the weight gain there is alot of water weight and flesh weight that surrounds that port now and the nurses stuck Jack several times but couldn't access it. Bummer. I emailed Jack's oncologist at Jack's request to see if we could just have it removed during his eye surgery in November. No go. He wants to get firm information on how the tumor is doing, not just the speculation from the radiologist that the tumor is not growing and that the change was Necrosis.
I am not sure what we will need to do, I am waiting to hear back on the maximum amount of time a port can still be viable not having been accessed. We might need to make a Dallas trip to Children's Medical Center and have them try. Nurse Sara works with kids ALL the time like Jack who have gained alot of weight on steroids, so she is fully qualified to access it if it is at all possible. She even used a longer needle and it didn't work. We will see, over all this is not a big deal, just one of life's little inconveniences. Jack was exceedingly brave today, he was emla'd up, but we really didn't let the cream sit long enough to numb his skin, only to take the edge off so he could get back to school more quickly. He was very brave being poked with a very thick needle over and over, he never even flinched or shed a tear.
I continue to be thankful for my family. I am always grateful that I get to hold Jack's hand through this journey.
We will spend our usual Thai Kwon Do time catching up on Bible Bowl tonight. I have such fond memories of Bible Bowl from when I was a kid. It is a nationwide program, a specific book from the Bible is the subject matter and kids starting in the 3rd grade can participate. My kids have enjoyed it this year, and my favorite part is sitting at the kitchen table with my three munchkins going over the scriptures verse by verse and them filling in the answer blanks on their study sheets. There is alot to be said for devotionals and kids, but there is nothing like being in the Word itself, not something written about the Word.
HBO therapy is going well for Jack. Just about 1 week down, 5 to go. Thanks to my friends this week who have sat with me in the waiting room to keep me company. Today, thanks to Judy, I found my way to the coffee kiosk. Judy is the queen of coffee and she can smell it miles away.
After Jack's HBO therapy today we went straight to the cancer center to have his medi-port accessed and flushed. A mediport is like a little quarter size disc, about 1/4 inches thick that was surgically placed under his skin before chemo started, the chemo is given through the port which has a plastic vein attached from the port then surgically attached to one of Jack's veins. It cuts down on the wear and tear or your own veins so they don't weaken through chemo or heavy access. We don't use it currently but it must be accessed and flushed out to keep it available and clean for future use. At some point it will be removed, it wont be soon enough according to Jack. Due to all the weight gain there is alot of water weight and flesh weight that surrounds that port now and the nurses stuck Jack several times but couldn't access it. Bummer. I emailed Jack's oncologist at Jack's request to see if we could just have it removed during his eye surgery in November. No go. He wants to get firm information on how the tumor is doing, not just the speculation from the radiologist that the tumor is not growing and that the change was Necrosis.
I am not sure what we will need to do, I am waiting to hear back on the maximum amount of time a port can still be viable not having been accessed. We might need to make a Dallas trip to Children's Medical Center and have them try. Nurse Sara works with kids ALL the time like Jack who have gained alot of weight on steroids, so she is fully qualified to access it if it is at all possible. She even used a longer needle and it didn't work. We will see, over all this is not a big deal, just one of life's little inconveniences. Jack was exceedingly brave today, he was emla'd up, but we really didn't let the cream sit long enough to numb his skin, only to take the edge off so he could get back to school more quickly. He was very brave being poked with a very thick needle over and over, he never even flinched or shed a tear.
I continue to be thankful for my family. I am always grateful that I get to hold Jack's hand through this journey.
Comments
I have been keeping up with your blog posts - just haven't been commenting, but want to today.
I love the title of this post and it moves me deeply. I have been praying for you and for Jack and all of you as you travel this journey together, like you say. I know it is very difficult.
Much love to you all! Dee