April 23 & 24th - Update on Treatment Plan & Going Home!!

Chase's radiation treatments have gone much smoother this week than they started last week.  I think he's down to about 15 minutes in the machine now.   Thankfully, he's also having less discomfort in his neck/incision area.  I think having the weekend off from treatment has given his body more time to recuperate, which makes me thankful that he only had to go two days before a break.

What you're looking at on the left is the actual radiation room.  The table that he stays on, although difficult to discern here, is flat and appears to be nothing short of uncomfortable.  The red object near the end of the bed is a neck support, but it's not meant for his comfort.  Instead, it's means to keep him aligned and have his head in an exact position during the entire treatment.  Although it isn't made of hard plastic, there is very little cushion support to it.

The large white apparatus in the background can actually rotate around him.  I wish I could've caught that in action on film, but I'm not allowed in this room until he's pretty much ready to go.  I wouldn't say Chase enjoys the radiation, but at least he gets to listen to any kind of music he wants while he's in there.  Thus far, I think I've heard Twister Sister, ACDC, Billy Joel's "Uptown Girl" and Rockwell's "Somebody's Watching Me".  Yep, he's liking the 80's music.

And I believe I mentioned in an earlier post about the long underground hallway that connects Egleston to the Winship Cancer.  Here's a picture of it, but WAY down at the end, isn't the end of it.  The tunnel has a significant incline on the way back to Egleston, so you can't see the doors on the other end from the Winship side.   I've pushed his wheelchair up the hill a couple of times.  It's actually been nice exercise!!

Thus far, Chase hasn't experienced any side effects from the radiation that he can tell.   We met with Dr.Natia, the Radiation/Oncology doctor, Monday afternoon.  She did say that any side effects that he may will experience should start showing up toward the end of the week.  We pray for NONE, or as close to that as possible, please.

William came for a visit, too!  Once he got there, it was quite difficult to get a coherent answer out of either of them.  They were pretty wrapped up in chatting and figuring out how to battle each other using their phones.

It's always good seeing the two of them together. I know Chase was excited to see William, especially since it wasn't an entirely expected visit.

And Dr.Cooper has also stopped back by.  Oddly enough he asked US what the plan was.  "Um...,"I thought. "Aren't you supposed to tell US?"  Come to find out, Chase is being handled by the Radiology team at the moment.  As best as I can tell, although the "teams" do chat, depending on what's going on with each patient, he/she gets handed off until it's time to pass them back.  Kind of like a warped game of football...in a way.  

In essence, what Dr.Cooper said is that since he's receiving radiation from his brain to the bottom of his spine, instead of more targeted on the large tumor, they won't be doing any chemotherapy immediately following the end of radiation.  I asked about the intrathecal chemo (directly into the spinal fluid) and it sounded like even that would need to wait due to the more comprehensive radiation.  I've heard that chemo directly following radiation can cause your blood counts to plummet, but I didn't think that they would have to hold off on the intrathecal chemo, too.  He did say that Chase would probably have another bone marrow aspiration and spinal tap within a few weeks after radiation, but beyond that it sounds like they're not making any plans for further treatment.

Let me preface what I'm going to say by stating that I DETEST chemo and what it does to Chase.  It's a vile, heinous chemical and I understand it's necessary and that it has worked in the past, but I STILL cannot stand it when he has to have it.   Given my feelings about chemo, I'm strangely at odds with him NOT having any chemo or at least there not being any plans for chemo.  Since we've been through this three times before, I'm kind of in that "fight" mode. Kill the cancer!!  Granted, I know that the radiation is also doing the same thing, but the thought of "wait and see" after his radiation just kind of grates on me a bit.  But that's on me :-)

Colleen, the head Aflac nurse has been discussing with Chase about when he might feel ready to go home.  He's getting stronger daily, but he is still in need of assistance and gets tired very easily.  His idea was Thursday, but after we were told that he would be moved off the Aflac floor since there are other patients who have a more critical need, he opted for Wednesday.  We've done the "move to a different room"thing on several occasions for one reason or another and it's no fun.  So, Wednesday it is!! I know Chase will be happy to be back home with his dog, Cooper and I'm looking forward to my own bed.  And now being that it's Thursday as I finish writing this - we are HOME!!

But I'm getting a little ahead of myself.  Wednesday morning, our last day, we woke to Rebecca as our nurse!!  And she even brought him a special cup, just like she used to! I had forgotten all about them. "Chase's Special Good Morning Cocktail".

Only this cocktail didn't contain Miralax like most of the past ones she usually had brought him.  It was just around 8 am when she came to his room, which is not an hour that Chase is well acquainted with these days, but he certainly woke up a bit once he realized it was her.  Enough to exchange a few quips with her. It was a great way to start our last day there.

If you're new to Chase's blog, Rebecca has been his primary nurse since April 2009, just over 5 years so the two of them go a LONG way back.  She's been one of the few people who has always been able to get (harass, cajole, coerce) him into doing what he needs to do.   Yep, she's got a gift.

While we waiting on his 2:15 radiation appointment I got the car packed with all of our things, which I attempted to keep to a minimum.  He was also prescribed a bath chair and a wheelchair since he still requires a lot of assistance and doesn't have much energy.  I drive a Corolla and thought my trunk and back seat would have plenty of room for everything....barely.  I had my trunk all neatly packed when I realized the wheelchair was going to need to go back there. UGH! That wheelchair might collapse and unfold rather easily, but it's heavier than it looks and my trunk isn't all that high off the ground.

But now we're both home and we're going to enjoy it!  I'll keep posting on his progress and anything else we learn long the way. Thank you for the continued prayers! They've been uplifting!!

God Bless!!

Day 2 of Radiation, Brother Time, and The Weekend

Thankfully, there isn't a lot to report in this post!! Day 2 of radiation went much smoother than the first day. He was only in the room for about 15 - 20 minutes this time. I think it would've been shorter, but they keep having to re-align him on the table. At one point, his technician came out and asked if he had scoliosis. Although he's never been officially diagnosed with it or treated for it, he does have a definite curve in his spine, which he can thank me for, unfortunately. Apparently, the curvature is causing them some issues because his spine isn't straight when he's on the table. I have no idea if his scoliosis will be addressed in the near future or not, but it seems to be coming up as a topic more and more often this go around.

 

Thus far, he hasn't been adversely affected by the radiation. It's my understanding that the side effects are cumulative. They have asked about headaches and nausea, but he hasn't experienced any - praise God! The radiation treatment itself has been taxing on him and has left him rather exhausted. Fatigue can be a side effect, but for now, I think it's the whole experience of the treatment itself that has been wearing him out.

 

Radiation and physical therapy, that is.

 

His two physical therapists came by earlier in the day, before he went for radiation and put him through the paces. He only needed a little bit of assistance to get up out of bed, which was a HUGE improvement, so they have now started to focus a lot on his neck and shoulders. Due to the pain, for months he's really guarded his shoulder and neck area and it's become a bad habit, which they are going to help him break. Breaking habits can mean pain, which it did for him, but pain is also progress.

 

Oh, and he rolled over onto his side in his sleep!!! You might be asking why I'm excited about that? Since his surgery, his neck area has been so sensitive to movement that he hasn't moved much and has needed a lot of assistance getting in and out of bed, even moving around in bed sometimes. Each day, he's gaining strength back, but rolling onto his side is a sign that his neck is able to sustain a different position.

 

Once PT left, he slept until it was time for him to go to radiation because my Mom and William were scheduled to come by for a visit. Chase was really anxious to see his brother and even called to find out when he could expect him. Even though he was tired after radiation, he perked right up when we got back into the room and William was already here. Let me tell you, it was great to see them both together. At that point, my Mom and I were pretty much ignored as the two of them got involved in talking about the games they liked to play on their phones.

 

My Mom and I left to go get dinner for ourselves and give me some time out of the hospital. Not long after we got back, David arrived with BBQ for all of the boys, which Chase had asked for. William can eat quite a bit, but Chase was keeping pace fairly well. Some of the meds he's currently on are increasing his appetite, which I've noticed. But, that's a good thing, too. I'll be happy to see him gain some weight in anticipation of days when he might not feel so much like eating.

 

Saturday started with Chase eating a big breakfast, some neck pain and perhaps some acid/indigestion problems. We were told that he could have some irritation in his throat and GI track due to the radiation, but I think it was a bit too soon for that. Personally, given how much BBQ he ate the previous night followed by a large breakfast, I think it was overindulgence. He's already on a daily dose of Zantac and has been for years, but now they've added another med to help control the acid.

 

The neck pain he's complaining about is centered along the line of his incision. The doctors said this is normal as those muscles beneath it are healing and stretching. They're now giving him Flexeril, which is a class of muscle relaxant, but so far it hasn't affected his bladder. It bothers me to see him on so many medications, each with its own side effects, but I know they serve a purpose. I'm simply looking forward to a day when he isn't complaining of pain.

By the afternoon, I think any discomfort he was in was forgotten when Mr. Costello (known as Mr.C) came by for a visit. He's Chase and William's Social Studies teacher. My heart went out to the man who unfortunately drove to the "other" children's hospital in Atlanta, Scottish Rite, before making his way here to Egleston. Both hospitals are also known as CHOA (Children's Healthcare of Atlanta), so it can get confusing knowing which to go to. I did let him know that he wasn't the first person to drive to the wrong one. Or the first person to go up the wrong elevator once he got here. But once he made it to the room, I might has well not have existed. The two of them started chatting and before long were geeking out on playing games on their phones. I do have to say that he plays his games quite elegantly - notice his pinky finger.

 

Easter Sunday was rather calm around here. Chase got an unexpected visit from his cousin, DJ and his wife. They chatted for quite some time about historical stuff, which made his day I think. Anytime he can engage someone in history talk or WWII, it's a good day.

 

And...he got a bath!! For that we were ALL excited. I knew a bath was going to be a challenge and he would've had one FAR sooner had he not had some recurring pain issues that needed to be dealt with. Plus, up until yesterday, he needed my assistance to get out of bed. I was SO happy to see that he didn't need me to get up. He was slow and careful, but he did it!! To be honest, I'm not sure what finally got him in the bath. Was it the biscuit that he so wanted to eat or the potential threat of Rebecca giving him a devil of a time? I think it was both. That's what I just love about her and the impact she's had on him. Even though he hasn't had the pleasure of her being his nurse yet while we've been here, her "specter" still has power. **Cue evil laugh**. Hey, if it works....run with it. I, and everyone else, can now freely inhale around him.

 

So, today (Monday), he has radiation at 1:30 and we also wait to hear what his oncologists have to say about him and his progress. He does not have to remain here at Egleston for his next 10 radiation treatments. Given that, the question right now is when they might discharge him. When I last spoke to Colleen, the head Aflac nurse, she said "early this week". That would be wonderful!! We'll pray that today goes smoothly and that his pain is managed so he can at least go home, sleep in his own bed, and see the dog he misses!

 

Thank you for the continued prayers!!

 

 

 

 

 

Day 1 of Radiation: Not Without Complications

Chase and I both stayed up far too late last night (1:00 am).  I was writing his blog and he was playing around with his new phone.  Naturally, I tried to blame keeping me up so late on him, but he called me on it.  The boy is getting wise to my tricks.  Oh well.  Since we went to bed late, we tried our best to sleep in today.  For the record, he succeeded far better than I did.  Unfortunately, I recalled that he was supposed to have an appointment today with his pain specialist this morning, so I had to cut my beauty rest short to call and cancel his appointment.

He first visited this specialist about about two weeks prior to coming to the ER last week.  I can't say how large that tumor may have been at that point, but there was a little part of me that felt slightly vindicated telling them the source of his pain had been found.  If that's wrong, then please pardon me. However, I think Chase feels vindicated.  I get the sense that the previous doctors and physical therapists weren't taking his protests of pain quite seriously.

But I digress...the woman I spoke with was understandably shocked when I told her that a tumor was found as the cause of his pain and that it was cancerous. She asked how we found out and I explained that we ended up going to the emergency room and had an MRI on the same day that her office had also scheduled one.  She wished him well and thanked me for letting them know.  What I'm curious about is if he or any of the other doctors, once they find out, will request to see any of his MRI scans for themselves.

Oh, and I'd like to thank all of the nurses out there (some of them former students) for answering my question regarding the blood draws and why Chase had to be stuck instead of using his existing IVs.  I really appreciate the clarification.

And I'm also happy to report that today there were NO problems going "potty".  Yay!!

While we waited for 2:30 to roll around (radiation time), Rick drove up to the hospital for a visit.  I had not seen him since Saturday, so it was really nice to have him here for the afternoon.  And I earned a new nickname from him - bell huey.  If you have no idea what a bell huey is, then hopefully the picture will be a huge clue. Pay special attention to what it's doing.

Think about it...get it?  If you guessed "helicopter mom" then DING, DING, DING!  Yep, my husband just loves giving me lovely nicknames.  It's part of his charm :-)  But you know what?  I'm probably one of the BEST bell huey's out there!!  I just hover from a safe distance.

As I mentioned in yesterday's post, Chase was complaining of some eye pain.  Colleen, the head Aflac nurse, came by the room around 1:00 pm and said that, just as a precaution, someone from opthalmology would be coming by to check his eyes.  They showed up a few minutes later and proceeded to dilate his eyes.  Now, I wish I would've taken a picture, but I didn't.  So, please just imagine Chase with his glasses kind of resting down his scrunched up nose, holding his new phone at arms length trying to focus without much success since his eyes were blurry.  The poor thing kind of reminded me of an old man who refuses to acknowledge that his vision has deteriorated.  No offense to old men with poor vision, but it was a little humorous.

He didn't have to struggle long because it was time for radiation.  We once again went down the l-o-o-o-o-o-n-g underground tunnel between Egleston and the Winship Cancer Institute.  I'll have to take a picture of it tomorrow if I can remember because it's actually impressive.   Anyway, once we reached radiology, we were told that it would take about 45 minutes.  Apparently, the first day is the longest because they have to take a series of X-rays, which I wasn't aware of.

Well, as past history has indicated, nothing EVER really goes smoothly for him.  Today was no exception.   They managed to take all of the X-Rays (6 total) and then the equipment failed.   Of all of the radiology labs they have, and there are MANY, the one he was in failed.  Winship is a busy, busy place, so he had to be placed back in his wheel chair and brought back to the waiting room until they could either get the machine working or find another available room.  He looked utterly exhausted after that first part of the session.  The table he was on appeared to be about as uncomfortable as they come. Frankly, I was really worried about his neck and his incision.  He seemed to soldier through it all okay though.  If it were me, I would have been a whining mess!  Finally, they switched rooms, but everything needed to be re-calibrated, which took time.

The "command center" for his radiation lab was actually pretty cool.  Again, no pics but maybe I can sneak some.  I'm not allowed in, but I looked from outside the curtain.  They had several monitors set up and two of them were cameras into the room itself so I could see him on the table. Another was a picture of his spine.  There were three technicians for him and they could communicate with each other as they made many, many, many adjustments to him.   One of the three kept running back and forth between the room and the command center.  If that's what she does all day, then no wonder she was skinny as a rail.

By the time the whole process was done, it was well past 4pm!!  Not the 45 minutes that we thought we were going to be over there.  Chase seemed to take it all in stride.  He was completely wiped out though, but I couldn't tell you if it was the radiation or being on that awful table that did it to him.  Before we left Winship, I asked what they specifically scanned on him.  I thought they might avoid the stitches area since the skin is tender and radiation can aggravate the skin.  Nope.  They scanned him from brain to the bottom of his spine.  Wow!

Back in his room, Chase got into bed, ate some grits and a chocolate protein bar and then slept and slept and slept.  Rick and I went downstairs for a late lunch/early dinner so he could have a quiet room.  Chase pretty much slept until his Dad arrived and then woke up to chat a while.  We've watched some TV tonight, he's had a snack and he's been back on his phone again.

Right now it's almost midnight, the lights are out, I'm typing this blog and he's over in his bed still talking to me.  No matter how many times I tell him to go to sleep.  And just when I thought he might be drifting off, his nurse has now arrived to take his vitals!!  Argh!  Oh well.  At least we'll get to sleep an hour earlier tonight.

We didn't get a chance to speak with any of his oncologists today, so I'm hoping to speak with them tomorrow to see if they have any kind of game plan in mind.  Until then, thank you for the continued prayers and support.  They're uplifting and mean so much!

God Bless!!