Robert returned to the hospital Monday morning to have his new port put in, and a round of admission chemo. The surgery went well and he is is recovering nicely. For once the three day chemo admission was actually only three days, and he got to come home for the weekend.
12 April, 2014
08 April, 2014
The surgery was over quick and went well. Robert rested this afternoon and is feeling good. Now he must wait the rest of the week for the infection to clear before he can come home. The new picc line will likely wait until Monday. I worry about him getting that news.
07 April, 2014
He is otherwise doing well with the antibiotics and being off of the chemo. He would have likely been able to come home tomorrow and stay for the rest of the week. But now with the surgery added, he will have to stay through Friday at least, and is scheduled for readmission on Monday. So we'll be lucky to be all home together for the the weekend at very best.
06 April, 2014
I haven't posted anything in a while, because things have just been moving nonstop. But this morning I'm sitting in a Children's Hospital with the time, opportunity, and motivation to get those who care caught up on our goings on.
I no longer travel for work. So, with my newfound proximity we have switched the way that we are handling Hospital admissions. Kasie is staying at the Hospital with Robert during the week, while I get Ben of to school, and drop Allie off at a friends house allowing me to work a full day. If I cant make it back for the bus, Kasie coordinates Ben being dropped off at a friend or neighbors house, or staying after at school for a bit. I pick both of them up on my way home. If the stay extends through the weekend, on Friday night I'll drive to the hospital with the kids. We'll all visit together for a while, then switch places. Kasie will go home to spend the weekend with the littles, whilst I stay with Robert at the hospital through Sunday. Switching back Sunday night or early Monday morning, the process starts over. It works well as long as Ben is healthy. When he gets sick, the system gets more complicated...but we manage. Once you outwardly gain control over your emotions, logistics becomes the hurdle. We couldn't do it without the selfless support of the amazing network of friends and neighbors that we have.
Robert finally had his first admission therapy for the new protocol last week. It was originally scheduled earlier, but he was too Neutropenic to begin. Last week the counts were good enough to proceed.
Kasie and Robert the first night-
10 March, 2014
09 March, 2014
The steroids that have always made him emotional and unbearable have been more than tripled in dose. They have also caused him to swell to over twice his normal size. The weekly spinal taps have his back very sore, with occasional headaches. He has been so weak, that at times he needs help getting into the car.
The active cancer cells that were found in the spine have to be eradicated before moving on to the next phase of the protocol. They should've been gone after a couple weeks, but have been hanging on longer than desired. Finally it appears that we have a clear spinal draw from last week, one more from this week will confirm it allowing us to proceed to the next types of chemo or treatment. Once this happens, this means that the chems in his system are at such a level that they are preventing the body from producing further cancer cells. This is cellular remission. Remission should take place a week to a month after treatment starts. If you were around for a 2010 post I talked about remission a bit. TV, movies,& general misuse have seemed to distort the definition of remission. It does not mean that someone is cured or "safe". Simply put for our case, it means that the cells in the body are reacting to the cancer therapies, and Cancer Cells are not detected. It means that they have succeeded into turning his body into such a toxic environment that cancer is presently unable to live there. If treatment is stopped, the cancer comes right back. This is why blood cancer protocols are so long. For kids with blood cancer, remission is the starting line.
The next phase will have more hospital admissions, and perhaps some therapies that are new to us. That will be starting within the next couple of weeks.
All in all Robert is still a pretty happy guy most of the time. I'm very proud of him, as he had the idea to work to fill the "treasure box" at the Aflac Cancer Clinic at CHOA. After a rough day, kids can go and pick a small item from the treasure box. Its amazing how much they look forward to it, and how much it lifts their spirits. The box had been a little lean for a while when Robert had this idea. His mom pretty much took over from there and Kasie will be hauling a car load of small gifts for the hospital to use to restock the treasure box. I'm very proud of both of them. Thanks to all who pitched in towards their effort.
26 February, 2014
I haven't posted anything for the last couple weeks, but I assure you it's not due to the lack of thought. Quite the opposite in fact. I find my mind at endless labor theorizing, philosophizing, positioning and generally grasping at straws. I stared at a blinking cursor a few times, only a little too willing to find my rescue in the form of distraction... any will surely do.
When I started this thread back in 2010 it was intended to be purely informational. I faced a sea of people who cared enough to want to know what was going on with my son. I wanted to be able to communicate that information once, and do so effectively. I didn't like talking on the phone, I hated Facebook, Twitter (micro blogging) seemed like a good idea but there is no way I would involve myself in anything with such a ridiculous lexicon. This left me with the option of a website
William Faulkner said "I never know what I think about something until I read what I've written on it.", and that sort of became the case for me as well. When things were at their worst, it seemed that this medium somehow aided me in organizing my thoughts and perspectives on a situation. An odd and equally unexpected development for sure, but I just went with it.
Now here we are in 2014. To be honest I was looking forward to hitting the delete button on this thing right after Robert's "cancer free" party this summer. I had even made a few mental notes about a final post. But now we are starting over. I want to continue to keep those who care enough to check on us informed on the goings on. That being said, three and a half years later I still don't like to talk on the phone. I still hate Facebook, (really people get off of it, it's the bane of our civilization), and you're still not going to catch me asking someone to twittley tweet me. Therefore, the Blog lives on...
Starting over ....but not entirely. In 2010 on top of the emotional issues, we found ourselves facing what seemed to be an abyss of the the unknown. As difficult as we find our current situation, we have gone this way before. We know the procedures, routines, most of the treatments and what to expect. My wife and her network of friends are miracle workers when it comes to logistics. I cant say enough about the kindness of these fine people, thank you. Additionally Kasie has become a Super Ninja Cancer Mom, who literally made her own diagnosis on an issue this week (by smell...I'm not kidding) and demanded that a test be run, the results of which proved her correct. So starting again, yes. Starting over, not quite. Not with some of these arrows in our quiver.
Robert is a few weeks into the new program. He is on much higher doses of Chemo therapy, and spends a lot of time at CHOA. The Cancer cells are still present in his spine, and the new chemo should have eradicated them by now. However they are greatly reduced, which shows the new therapy is having effect. Hopefully the spinal tap taken yesterday will show clear when the results come in next week, allowing him to progress on the the next step in his treatment. They have to remove all the cancer cells that they have located before he moves on to the next phase. One of the biggest challenges has been the extremely high dose of steroids. He's always been a handful on them previously, and now his dose is at least triple what it has been. He has swollen up like a tick and has mood swings that can be difficult to deal with at times. He's also having a hard time with some pain in his bones and joints, but we are able to keep it managed. Its hard to see him like this, but take comfort in knowing that he is generally happy and still having fun.
You can't keep my boy down.
31 January, 2014
We'll be back in the hospital for more tests next week, I'll know more specifics then. More to follow.
30 January, 2014
The ice storm in Atlanta had apparently shut down the clinic labs the last couple days, so our wait for some news will continue a bit longer.
To be perfectly honest Robert and I really don't have time for such nonsense right now anyway, we have to get our pinewood derby cars finished.