26 April, 2014

All went well

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

A welcome respite

Robert made it home yesterday afternoon. And the good news is that it was decided to not re-admit on Monday, but to postpone one week allowing his body to recover.  Barring any emergencies this will give us all almost 10 days together.  He is feeling fair but excited to be back home  His hair is coming out pretty fast now, so I'm going to tighten it up with a close haircut tonight.  He skin is extremely pale and looks paper thin. Though I must say it doesn't look that way in the photo below...maybe the camera.   His Chest and the insides of his arms are still heavy with deep purple bruises.  He is pretty weak needing to mostly sit, but is in really good spirits and happy to be home. Ben and Allie are excited to have their brother back home, and certainly glad that Mom is back home to do things the "normal way"...not Dad's way.  The kids are playing, and were doing some work outside and around the house.  Switching between enjoying the beautiful weather in the shade out on the porch.  It's a great weekend.

08 April, 2014

Tuesday 4/8

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

Monday 4/7, a few results

Today's Flouroscope did not show the cause for the problems in the portacath, nonetheless it is still not functioning properly.  Robert will have surgery tomorrow to have the malfunctioning unit removed from his chest.  Unfortunately they cannot put the new one in at the same time as they normally would until his infection clears.  This means that he will have to get a picc line installed to use until he is cleared for another surgery to install the new portacath.

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

Here we go

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-
The plan was for 2 nights and a wake up before heading home, but it evolved into an entire week in the hospital.
After finally coming home last weekend, he got to spend a few days at home before a fever sent him to the ER on Thursday.  They had an extremely difficult time accessing his port-a-cath in the ER.  Fearing that the device had moved out of position, they decided that they needed to switch to a standard IV.  They had difficulty doing that as well.  Admissions determined that there were no beds available on a floor appropriate for Robert, so he was then transported via ambulance to the other branch of CHOA.   When he arrived here they were finally able to get his port accessed, but after several previous tries his chest is bruised and sore.  His platelets were very low, making him bleed and bruise very easily. Once the port was finally accessed they noticed that it did not seem to be functioning properly, an issue that we're still dealing with now.
His arms are covered in bruises from IV access attempts while his platelets were low.
It looks like the fever was cause by an infection in his port, which is not related to its function issues.  He is on antibiotics for the infection and has received a blood transfusion and a couple rounds of platelets.  His counts are starting to turn back to where they should be except for platelets, which are commonly the last to turn.  He received another platelet transfusion just this afternoon.  His chemo is being held for now until he can recover a bit. Once he finishes a couple more days of IV antibiotics, his counts rally, and he is fever free, we can bring him home for a little bit.  As far as the function of the port, it is in all likelihood mechanical.  Fluids are going through, but slowly.  If they try to push them through at normal speeds the pump receives a pressure error.  Possibly a kink in the line.  He will be getting a fluoroscopy in the morning to get a better look at the mechanics to see what is going on and we'll take it from there.
He's hanging in there.  He has been very weak, and rather concerned about the issues with his port.  He is generally very protective of his port and is very aware of the situation and the options. He's always been afraid of people touching it, or something happening to it, so there is some added concern there for him.  He's been having quite a bit of pain in his knees and back, but I think the docs are finally managing it properly after a little motivational discussion.  His lungs were crackly when we came in, but have cleared from the breathing treatments.  He seams to be getting back on track from this detour.  Tomorrow will bring more trend data in the counts, fluoroscopy results, and more information.




10 March, 2014

Quick Photo

Robert pulling a load of gifts for the treasure box at CHOA into the hospital early this morning.

09 March, 2014

The First Phase

This initial phase of the new protocol has served as an unwelcome reintroduction to several old foes; side effects that are hard to see Robert deal with. Only this time, they are emboldened by even heavier dosages than the "high risk" protocol that came before.

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

Here we go...

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

The call finally came

Test results confirmed that this weeks lumbar puncture contained Leukemia cells, Robert has relapsed. They were very few but there should be none.  He will finish his current treatment plan, then begin a new 2 year protocol including Chemotherapy and Radiation.  

We'll be back in the hospital for more tests next week, I'll know more specifics then. More to follow.

30 January, 2014

No News

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.

28 January, 2014

Please Not a Relapse

Yesterday we received some news from Robert's last Lumbar Puncture (spinal tap).  Analysis confirmed that there was a trace cellular presence in the spinal cord, there should be none.  Leukemia cells can migrate to the organs and central nervous systems causing other cancers.  Robert has had regular LPs with favorable results, but this one caused some concern.  The good news is that the cell count was not great enough to clearly claim a relapse, but the fact that they were present at all is alarming.  Docs performed another LP yesterday, and we are awaiting the results.  If the spinal fluid is "clear" then we will continue with his current protocol and regular LPs to monitor.  Robert has been in this this daily chemotherapy nightmare for over 3 years, scheduled to wrap up this summer. If however the results do confirm a relapse, then he will have to start a new protocol afterwards. This time with the addition of radiation to the chemotherapy.  But let's not jump the gun, we are not to that point yet. Off the record the doctor rated it a 50-50 chance either way. I will admit that all I can seem to think about is the day when they told me that they were changing his classification to "high risk", meaning of relapse.  But we've heard enough good news/ bad news, chances are good/ chances are bad bull*#!t, that we really only pay attention to the facts.  So we'll just wait for the facts, make our decisions, ruck up and drive on.

On a good note Robert's breathing is much improved.  The confirmation of his diagnosis of Plastic Bronchitis has had to be put on hold, but all involved on that side of the city are confident that's the issue.  His counts had been dropping severely low recently causing him to miss school and activities.  In addition to his ANC, his platelets have been dropping.  Combined these make the bronchoscopies a bit risky.  Diagnosis aside the treatments of the condition are working well.  The machine that shakes his chest and the breathing medicines have resulted in a complete turn around in his lungs.

The machine shakes him fairly violently, I do have some concern that its causing some brain damage.  Because he is suffering from some seriously questionable decision making as of late...that's a joke son.