So sorry for the lack of updates.
Some days writing is easy and some days it isn't. It forces me to think about our situation. And I don't wanna. But since we are in the hospital anyway...kinda hard to avoid it.
Everything has been going pretty smoothly. No sickness from Round 12 back in October. We were able to sneak in a trip to the Zoo the day after we were discharged! His counts weren't great, but not toooo low, so we just avoided people at all costs. The nurses didn't freak when I told them what we were planning so I figured we were okay. I think they know us well enough at this point to know I had the hand sanitizer out every 5 minutes. I had been really, really wanting to take the boys since we spent the summer on lockdown and it was SO nice to be out and have a normal family day. The boys had a great time and I am so glad we were able to pull it off.
Totally loving not driving to Dallas every day for radiation!! Those 20 days will not leave my memory anytime soon. I am so thankful that is behind us. Extreme situations make you look at things differently and the whole process really made me appreciate our normal days...even if the normal is a new one.
I had a conversation with our radiation nurse that truly depressed me. One day when we were waiting for Jack to wake up from sedation, we started talking about how often they have children in the clinic for radiation. Childhood cancer is very rare and not all children with cancer require radiation (although when it comes down to it, I'm thankful we did it. Studies show that radiation after tumor resection equals less of a chance of recurrence.) and not all children that do require radiation require sedation--if they are old enough to understand that they need to be still, they don't have to be sedated. So, when she and I were talking, she was explaining the rarity of it all. Something about knowing that not many people were going through what we were going through at that same time was just defeating. And made my heart heavy. Not sure why. I would wonder as we drove into Dallas each day if anyone else was doing the same thing we were...and the answer is probably not. Oh well. Just gotta take it for what it's worth and move on.
His leg is healing well from radiation. It got bad for a few days towards the end. He was in a lot of pain when I bathed him or put cream on his leg. We got some new cream from clinic last week (stuff they use for burn victims) and it has helped a ton. He still experiences bone pain from time to time and that can be heartbreaking because he gets so distraught.
We checked in this morning for Round 13. Jack has been having a rough time with his port accesses lately, but thankfully this morning it wasn't too bad. A Push Pop and Spiderman made it all easier to handle.
He gained a little bit of weight which is awesome. His counts BARELY made the cut for chemo. It's crazy how compromised his immune system is and how long it takes for his counts to recover. He even got a shot after chemo last time to help his counts go back up...and we still just barely made the required number. They are typically at their peak right after chemo, and then they plummet. Lately it is just taking so much longer for them to recover.
We are so thankful he has not been sick throughout this process. We cherish our time at home and we are so glad that he has not had to be admitted inbetween rounds for a fever or infection.
This is our second-to-last round of chemo. He will be getting a new drug today and next time.
I am nervous about the new one.
It's the only drug (out of the five different ones he has had) that the doctors talked about really in depth. They don't always go into a ton of details, especially about side effects, because really? Do we want to know? Will it change our decision to continue with treatment? No.
So, they typically give the main points, hand over some literature and that's it. Of course they answer any and all questions that we have, always.
I could be looking into this too much, but the fact that they took the time to really explain the side effects of this one just makes me a little queasy.
But since the nickname for this drug is "Red Devil" (from Google, not the Doctors) (Yes I know I shouldn't be Googling) I think not.
However, I will focus on the good that the drug can and will do. I will pray that it is hard on the bad cells and gentle on the good ones. And that's really all I can do.
Right now, he is getting fluids and we are waiting on the chemo to arrive from the pharmacy. Pre-meds are at 4:30 and the first drug should be up and running by 5:00 and will be done by 8:00. The second drug--the new one--will go up at 8:00 and run until 6:00am.
We will repeat the same routine tomorrow night and Friday night. Hopefully we will be discharged Saturday morning. We were invited to a really cool event at the Dallas Museum of Nature and Science that is Saturday night. It is an event for cancer families put on by Heroes for Children. Jack is SO pumped! I found him a really cute dino shirt to wear (and one for Brayden of course). I'm so very thankful that it fell right after chemo before his counts drop to the 100's again!
My sweet blog friend Michelle's daughter got a clear scan this week (praise God!) and she mentioned in her post about how many times her sweet baby has had to be sedated (once is too much!!) and it got me trying to count all the times Jack has been sedated. Thirty. 3-0. Maybe more. I got tired of counting scans.
Ezra went to Heaven this past weekend. Please, please say a prayer for his family. I imagine that their hearts are hurting so very badly right now, and will always.
Gosh I hate cancer.