Thursday, April 24, 2014

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!!


Monday, April 21, 2014

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!!

 

 

 

 

 

Friday, April 18, 2014

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!!


Thursday, April 17, 2014

MRIs, Bladder Woes, Hospital Brain and Radiation - Oh My!

Yesterday, April 15th, was a long day. It all started at 5:00 am when a nurse technician arrived to take Chase's blood in preparation for his MRI, for which he would be sedated. Although there are at least three lights in the room that would provide ample illumination without blinding someone into full alert mode, none of these technicians seem so realize this. Note to self: Mark the light switches for future reference.
Another complaint is that they won't use one of the three existing IVs that Chase already has to draw blood. I'm not quite sure WHY since the use these to pump him full of fluids. Maybe this is something new they've started since the last time he was "inpatient", but I hate it that he has to be stuck over and over again. He's gotten a collection of cute looking bandaids, but I'm not sure what the difference is between freshly drawn blood versus IV blood. If anyone would like to comment on that, please feel free.

We both managed to get some more sleep, knowing they would be coming for him around 7:30 am. Or so we thought. It turns out, the MRI people called at 6:30 and wanted him to come on down.

 So here is where the "bladder woes" begin. Let me preface this by saying that he's been on a variety of pain medications and muscle relaxers, one of which has interfered with his ability to "void" in the past. They took out Chase's catheter Monday evening and he didn't go to the bathroom on his own that night, so we tried first thing in the morning before they wheeled him down for his MRI. No luck. The bad part was that he felt like he needed to go. Once we were down in the MRI room, he made one additional attempt to go without success. By this time, he was getting concerned about not being able to go and so was I. We were both thinking that the medications were inhibiting him, but until they wore off and he was finished with his MRI, there would be no way of knowing. Until then, he asked if they could put a catheter back in, but that would take a doctor's order to do so, which they MRI team couldn't wait for.

The MRI was scheduled by Dr.Cooper to scan from the top of his head down to his tail bone to verify if there are any other chloroma (leukemia tumors) in his spinal fluid or brain, so both he and the radiation team will be able to plan his treatment. Since this scan would cover a great deal of his body, he had to be sedated to ensure he stayed still for the entire procedure.
While he was being scanned, I returned to the room and went back to sleep. I expected him back around 9:30 or 10:00, but he didn't return until almost 11:00am. When he did get back, he was in pain and not because of the scan. He was still not able to go to the bathroom and his bladder was causing him pain. He immediately asked to have a catheter put back in, which again means that a doctor has to be consulted. Apparently, they have a new portable mini-sonogram device that they wanted to the nurse to use to see what his bladder looked like before moving to use a catheter. Since he had just received an MRI, his nurse, Amanda, decided to look at his scan first to see if she could see anything before using the portable scanner.

Chase told me to go out and tell her that he was going to refuse to drink anything else or take any meds until they got a catheter in him. He is usually pretty laid back about most things, so this was unusual of him to make a demand like that. I went out to the nurse's station, unaware that they were looking at his MRI. I saw Amanda surrounded by a couple of nurses and then heard a collective gasp. One of them said "That looks like a uterus!". They parted and from a fairly long distance, I could see a very distinct bladder-like shape on the screen. I knew it was his scan and his poor bladder was HUGE. No wonder he was in pain.

Amanda got up and gathered some catheter supplies and along with another nurse they both came down to the room as quickly as they could to relieve him. Even that was slow going. I felt horrible for him. They had to really push on his bladder to help him, but it wasn't long after the pain started going away. The catheter didn't stay in, but they kept it as part of his orders just in case. He ceased taking Norco, which he thought was the culprit and later that day was able to go all on his own. Praise God!
By this time, it was closing in on noon and I had a 2pm appointment that I had to leave for very soon. Chase pretty much passed out and went back to sleep while I showered. My Mom showed up to sit with him while I left. Right before she got there, I made a list (on my phone) of items I needed to pick up and also plugged my phone in since the battery was running low. I also looked at the Google Maps to see which route would be the quickest to the Norcross area and noted a couple of wrecks on the highway, no matter which route I chose. Ugh! But at least I was preparing ahead, right?

Well, here's where the hospital brain comes in. I was so intent on making it to that appointment on time that I forgot my phone in the room. I didn't realize that I had left it behind until I was too far to turn around. To make matters worse, I arrived 15 minutes ahead of time for my appointment, which turned out to be at 1:00pm not 2:00pm, which meant I was 45 minutes late. They tried to call to see if I was running late, but of course my phone was back in the hospital room....ON VIBRATE!!! I didn't want calls or text messages waking him up. So, my Mom wasn't able to respond that I got the appointment time wrong. UGH! Thankfully, they knew about Chase's condition and were very understanding.
Since I was too late for that appointment, I drove on home to pick up a few things before returning back to the hospital. Thankfully, Dr.Cooper had not come by the room yet with any new information. He dropped by around 5:15 that evening and David came in not long after so he was able to hear first-hand what he had to say about the latest MRI.

So, here is a bit of bad news.
The tumor (chloroma) that was compressing his spinal cord isn't the only one they found on the scan. Dr.Cooper said there are multiple areas along his spine that show signs of other chloroma forming. Thankfully, none appear to be compressing the spinal cord, but some are attaching themselves to the bone and acting "moth like". If it wasn't already urgent to start some kind of treatment, it was now more urgent than before. There was no more talk of a spinal tap either. He said he didn't need to biopsy every thing that was "lit up" on the MRI to tell him that there are others forming (or to know that there are leukemia cells in his spinal fluid).

The question at this point was about the treatment plan, which he wasn't able to elaborate about since radiology had not had a chance to view the scan and discuss treatment with him. He did talk about chemotherapy again, but nothing terribly specific. Heavy chemotherapy cannot be done at the same time as radiation or immediately following it either. Apparently, that can cause the blood counts to plummet for months. I had no idea. So, any chemotherapy that Chase will have will follow the radiation. We just don't know what kind of a lapse in time there will be between the radiation and any chemo that he may receive. It still sounds like he'll have some type of intrathecal chemo (chemo delivered directly into the spinal fluid) after radiation, but what other type of treatment he may receive and whether or not he may be considered for another transplant is unknown (to us) at this time.
I will say that Chase is not interested in another bone marrow transplant, even if he was a candidate for it. As a mother, it's a bit nerve wracking to know that because he's 18, he's the one that has the last say about his treatment or lack of. But we will leave that discussion for another day and hopefully it's one that we'll never need to have.

So, Tuesday ended with some news we weren't thrilled about and left waiting to learn how the radiation treatment would work. And that brings us to today. Another early morning wakeup call with bright lights and someone poking him to draw blood - why??? I ended up asking Colleen, the head Aflac nurse about it, so hopefully they'll cut back on the blood draws until they're really needed.
And it was another day of urinating issues. Ugh! During the night, he received a valium because he's started having some pain on the left side of his neck, near the incision. Valium, being another type of muscle relaxer, we think is impacting his bladder. Amanda was back as his nurse again today, ready to rescue him with a catheter, but thankfully after the Valium wore off, he was able to go on his own! Yay! You never think that you would be happy about such a common bodily function, but when you can't go it really hurts!! Chase can attest to that.

So after those issues this morning, we were a bit busy with a variety of medical and non-medical visitors coming by. The one who surprised both of us was Mrs.Reed, Chase and Williams' Geometry teacher from Snodon. I heard a knock at the door and said, "Come in". She was standing there and I thought to myself, "Gee...that woman looks a lot like one of his teachers." Lo and behold it WAS one of his teachers. For those who don't know Chase too well....he likes Math! I can tell you he didn't get it from me or his father, but he likes it, so he was happy to see her. Apparently, Mr.Costello, the boys' U.S.History teacher, had let her and some others know about Chase. Thank you, Mr.C!! I can tell you that it really perked him up to have someone drop by without any sign of Emory, Aflac or CHOA on their apparel or badge. It's not that we don't love all of them who are taking such wonderful care of him, but her visit was a great surprise.

While she was here, the pain doctors stopped by. They had heard of his issues urinating and since he said the Morphine button wasn't working well, they removed it and will try other pain medications that target nerve pain instead of muscle relaxers. So, we'll see how those go.

Oh, and he's been keeping his eyes closed A LOT! Whenever anyone asks him, he says that he's tired. Well, out of the blue today, he says that his eyes hurt!! What? I started fussing at him immediately. "How long have they been hurting and you haven't said anything?" That boy drives me crazy sometimes because he won't tell you when he's hurting. Thankfully, we think it may just be dry eyes because the light isn't hurting him and a warm, most washcloth placed over his eyes seemed to help him out.

Not long after Mrs.Reed left, Dr.Natia Esiashvili (or simply Dr.Natia), of the Winship Cancer Center across the street from Egleston, dropped by. Next to hearing from Dr.Cooper, she was on the top of our list of people were were VERY anxious to see come through our door. She's a lot like Dr.Cooper in that she has a very no-nonsense approach to how she went through her description of the radiation treatment and the potential side effects, many of which are similar to chemotherapy. I like her. She was more than willing to answer any questions and wanted to make sure that we both felt okay with what Chase was about to go through. Like Dr.Cooper, she wanted to start treatment on Chase immediately and within 90 minutes, he was being wheeled through the underground tunnel joining Egleston to Winship to their radiology lab for a scan and to create his mask.

I had no idea what this would entail, so I was a bit taken aback by the assortment of hardened mesh masks on the wall labeled with a variety of patient names. Apparently, to ensure that he doesn't move during the radiation treatment, they first have to scan him using a CAT scan machine and align him "just so", followed by draping his face and shoulders with a flexible mesh blanket that quickly hardens to form a mask. The mask has some sort of handles or grooves on the sides that can be placed into brackets to restrict his movement while he's on the table.

It's pretty surreal to watch them place this on his face and work very quickly to mold it to his face, neck and shoulders. He was able to breathe fine since there were openings in the plastic. They asked if he was okay and he said, "Yes, this thing smells like Mexican rice."

Really?

 He's been kind of wanting tacos lately, but they'd be soggy by the time they got here, so I think he was projecting his craving. Dr.Natia had said that she thought that was the first time someone had ever told her the mask smelled like Mexican rice. Leave it to Chase!

The entire procedure to "map" and "mask" him was done pretty quickly, in about 30 minutes. He has an appointment tomorrow at 2:30 for his first radiation treatment. I don't know yet if they will radiate from the brain to the bottom of his spine or if they will focus on the bottom of the spine going up to the incision to prevent his neck area from any aggravation since it's still quite tender. I believe the plan is to radiate him from essentially brain to tailbone since he could potentially develop chloroma anywhere spinal fluids can go.
Currently, Chase is looking at having radiation treatment daily for 2 - 3 weeks. It's my understanding these sessions are fairly quick. I don't think he would have it on the weekends though. Also, we're not sure how much of the treatment will take place on an outpatient basis, since we haven't heard the word "discharge" yet.

I will say that I was incredibly impressed with the radiation team and Dr.Natia. She was with him the entire time, ensuring the proper alignment, that the mask was as it should be and that he was kept as comfortable as he could be, especially his neck.

After returning back to the room, I headed out to my Mom's house to spend some time much needed time with William. He's been staying with my parents, which is what he did during the last extended time that Chase was in the hospital. He's got Maya (the doberman-beagle) with him, too and she really comforts him. I'm so grateful that I have my parents close by to the hospital. I live an hour away, when traffic is agreeable, and they live about 20 minutes on a good day. And today was a beautiful day, too!! It was so nice to be outside. William had some coupons for Brewsters ( a local ice cream chain), so we headed there and enjoyed a treat under a clear blue sky with the sun shining on our back. We then went back to my parent's house and I attempted to help him set up a wi-fi extender for a computer. Epic fail unfortunately. We've used it at home and set up a password on the thing that even after resetting it, we apparently couldn't clear. My Mom said she may need to call the "Geek Squad". I'll leave that in her hands.

I hated that I couldn't stay with him longer, but I'm just glad that I could have some time with him - period. If there is anything I don't like, it's the conflicting feeling that I have about leaving the hospital but never feeling like I'm spending enough time with William. If anyone has perfected human cloning, please leave a comment at the end of this post and I'll be in touch. :-)

As always, thank you for the continued prayers, especially as Chase goes into his first radiation treatment. I'll give a report on how it went as soon as I can and let you know of any new information about his treatment, too.

God Bless!!

Monday, April 14, 2014

April 14, 2014 - Waiting for news....stinks!

Yesterday, a bed opened up for Chase on the Aflac floor, so we are now back into our more "normal" habitat. Yay! He did manage to talk the doctors into letting him keep the catheter, which is still in place this afternoon. I'm kind of glad they did, because right now it's a huge effort for him to move his body into a different position.

 

Chase's Dad (David) got him moved into his room while I was able to briefly escape the hospital for a few hours with Rick. It was my first time leaving the building (the garden doesn't count) since late Thursday afternoon. I can't begin to explain how nice it is to leave, even if just for a little while. It helps to restore some sense of normalcy. We ate dinner at a local Mexican restaurant and then headed to Target to pick up a few things I needed...and didn't need, like the $1 bunny ears I couldn't resist. They didn't stay on his head long, about 20 - 30 seconds I think. Oh well. At least they stayed on long enough for a picture!

 

Today, Monday April 14, started off pretty slow. Chase has slept most of the day with the exception of a few interruptions for oral medications, IV beeps, and to change out IV bags. The important thing is that he's been able to sleep without much pain! Amen!

 

The neurosurgeon stopped by to check on his incision and his progress. He was very pleased to see that Chase's right arm has greater mobility today than it did yesterday. I was thrilled, too! He can now fully bend the lower part of his arm and raise the elbow off the bed. He can also flex and rotate his wrist and move his arm, albeit slowly, to touch his left shoulder. Such small movements that we take for granted every day, but to see him go from barely able to move that right arm to this?? Amazing!

 

A physical therapist and an occupational therapist stopped by today as promised. They helped Chase sit up in bed, stand up and move to a wheel chair so he could sit up. It was a struggle for him and I could see twinges of pain in his face, but I was relieved when they told me that he did most of the work himself. They wanted him to stay in the chair for about 30 minutes and he ended up staying there for close to 2 hours. The chair itself is pretty cool because the back can recline for a more comfortable position. When she came back to help him back to bed, he was able to do the majority of the work himself. He still can't use either arm to really support himself all that well and he's kind of unsteady on his legs, but just to see him moving around makes me SO happy.

 

The visitor who we REALLY wanted to see all day was Dr.Cooper, his primary oncologist. Every time someone knocked on the door, we were hoping it would be him. I think everyone who came by, whether it was other doctors or nurses, knew who it was we really wanted to see. The big question that has been weighing on all of us is WHAT is Chase's treatment going to consist of? Are we looking at more full-body chemotherapy like the last three times, another transplant, radiation? Inquiring minds want to know!!

 

Finally, another oncologist who stopped by received a text message from "DTC" (Doctor Todd Cooper) while she was in the room. He told her he would be by around 2ish - it was already 3pm. Not too long after they left, he showed up at last and my shoulders felt a little lighter even though he had yet to say a word. I think just knowing that we were about to get some answers helped. It's been over three years since we've seen or spoken to Dr.Cooper because Chase has been under the care of the BMT (Bone Marrow Transplant) Team, but it didn't feel like it. We have so much trust in him and he's always been a "plain speaker" to Chase, even when he was younger. Like he said when he was here today, "I'm not going to blow sunshine...". You get the idea!

 

So what did he have to say? He's made some phone calls to other doctors around the country and in this case, because Chase does not have signs of leukemia cells in his bone marrow, they are not going to do full body chemotherapy!!! Praise God! He was quick to tell us that there is a probable likelihood that leukemia cells could show up in Chase's bone marrow in the future. However, there is no sense in treating him for what isn't here. The important thing is to focus on getting rid of the remaining tumor and treating any evidence of leukemia that is present as of right now.

 

Chase will end up receiving targeted radiation to eradicate what is left of the tumor, coupled with chemotherapy that is delivered directly into his spinal fluid. Dr.Cooper has ordered an MRI for early tomorrow morning to verify that there are no other tumors that may be lurking in his brain or in other areas of his spine. Once we know that he's clean otherwise, the radiation team, who we've yet to meet, can start formulating a plan.

 

Dr.Cooper also wants to have another spinal tap to to verify the presence of leukemia cells in his spinal fluid. If they took spinal fluid from the area near the tumor instead of his lower back, then that may be giving us an inaccurate picture of the saturation of cells in this central nervous system. I don't know when that might occur, but he did say that he wants Chase to be far more recovered from his surgery before he has him go through another procedure. He will need to be sedated for that and he will also be sedated for the MRI tomorrow because it will be a long scan.

 

Overall, I'm relieved. Chase is relieved. I'm fully aware that this despicable disease could rear its ugly head in his marrow in the future, but right now I'm going to give thanks that he isn't needing to face the chemotherapy he so dreaded. Let him fight the battle that's before him now. Let's take this one day at a time.

 

So, waiting stinks! Yes, we waited a while to learn what the plan would be, but we're still waiting. Waiting to verify that there aren't any other tumors lurking around. Waiting to see when he'll start radiation. Waiting to learn what kind of radiation schedule he'll be on and for how long. But, I take heart in the fact that we know more today than we did yesterday and that he's got that answer to what was literally causing a pain in his neck!!

 

As always, thank you SO much for your prayers. Please keep them coming! God is good!

 

 

 

 

 

Sunday, April 13, 2014

The Day After Surgery

First, we have some more information about the test results. They aren't all back in yet, but we know a bit more than we did before.

  • It is confirmed that the tumor is made of AML (leukemia) cells.
  • He also has leukemia cells in his spinal fluid, which isn't surprising when you consider that's where the tumor is located.
  • However, the preliminary tests on his bone marrow are clean - no leukemia cells. We have to wait on further tests that will provide a deeper analysis, but for now his marrow is clean.

The bone marrow and blood being clean while the spinal fluid is not is highly unusual. We aren't quite sure what to make of it yet. We will be meeting with Chase's primary oncologist, Dr.Cooper, tomorrow. Hopefully he will be able to tell us more, including some ideas for treatment options.

Chase was on a morphine pump all last night that helped control his pain, so he said he slept well. I wish I could say the same, but I didn't expect to sleep much being in PICU.

A couple of Physical Therapists came by today to evaluate Chase. He currently doesn't have a lot of mobility in his right arm or leg, which was the side of the spinal cord that the tumor was compressing. The neurologist said this would happen and that it would improve over the next couple of days. They moved him around, got him to roll on his side, sat him up and eventually stood him up. He was in pain and asked that he get Valium before they got started next time. I think I had to hit his Morphine button 3 or 4 times while they were here. I could see he was in pain and I was so proud of him. I can't imagine how much effort that took less then 24 hours after surgery.

It seems like every movement he wants to make in his upper body causes a strain on his neck and those muscles. He can now move his left arm enough to scratch his face and hit his pain pump button.

He ate a great lunch today, which is encouraging, but he's very hesitant to leave the PICU right now. They've mentioned that they'll probably take him back to the Aflac floor when a bed is ready. He feels he needs to be under more supervision for one more night. That and they said they'll remove the catheter. He isn't thrilled about the thought of needing help to go "potty" while he's so incapacitated.

I can't recall if I mentioned that we could see where the tumor was. I took a couple of "before" pictures. It might be difficult to make out, but there is a definite curved area that was larger than it should be, which makes sense now that we know the tumor was 2cm x 3cm x 4cm.

And, just in case you might be a bit squeamish, there is a photo of the incision and stitches ( no blood ) a bit further down.

Thank you again for all of the continued prayers and positive thoughts!!

 

The stitches won't dissolve and will have to be removed in about two weeks.

 

Saturday, April 12, 2014

Finally Out of Surgery

I left Chase with the surgeons this morning around 8:30.  They told me it would take an hour to prep him for the actual surgery, everything should take 3 to 4 hours, and that I should expect a call once they started the surgery.

In the meantime, I ate breakfast and Jan Masingill, one of my bosses, dropped by the hospital on her way out of town for Spring Break.  She delivered a card that included donations from my coworkers that they gathered in a matter of hours. I was and am amazed and deeply touched by their generosity. I can't adequately express  how grateful I am or how wonderful the people are in my school system.  Thank you!

Right before Jan left, Rick, my husband, called and what I didn't know was that he was already in the hospital trying to find me. What a welcomed surprise since I wasn't expecting him until later.

By 10:30, I was about to come unglued because I had yet to receive a call from surgery. I left Chase's room to go to the nurse's station when my phone rang. They had started about 30 ago, which meant the entire time of the surgery was already going to take longer than anticipated.

The next phone call didn't come until 12:50. Chase was doing well but they still had longer to go.  Finally at 1:21 I was told the neurosurgeons had completed their part and all that was left was the bone marrow aspiration.

He was taken to recovery at 1:47 and remained there until almost 3:15. A recovery nurse called me and said he was in considerable pain and they were working to try and manage it before bringing him to the PICU. 

One of the surgeons stopped by and spoke with me about the surgery. Here's a quick run down of what we know so far:

- He will be in ICU for probably two days
- He has stitches in his neck that will need to be removed in 2 weeks.
- They were able to remove 40 - 60% of the tumor.
- The preliminary pathology looks like the tumor is consistent with an AML (acute myeloid leukemia ) tumor.

We do not have the results back from his bone marrow aspiration or the spinal tap. I was told earlier that we should hopefully have some conclusive news about the tumor by the end of today. Right now, this is a sit and wait situation. Based on what has been said, Chase will need some kind of treatment to eradicate the tumor. Whether that means radiation or chemo, I don't know. Until we have the rest of the results, they can't decide what treatment regiment he'll need, when he will start or how long it might last.

At this point, I was really hoping for more answers but it's in God's hands and I've got to leave it there. It's difficult, but at least we know what was causing his pain and the tumor is no longer threatening his well-being.

I can't thank you enough for the prayers and I will update as soon as we know more.

God Bless!

Friday, April 11, 2014

Asking For Prayers Once Again

I need to ask for your prayers for Chase. He was admitted to Egleston last night after we came to the ER due to shoulder and neck pain that has grown progressively worse over the past few months in spite of meds and PT. He had an MRI this morning that revealed a tumor (2cm x 3cm x 4cm) pressing against his spinal cord at the base of his neck/shoulder line. 
He's scheduled for surgery at 8am tomorrow morning to remove as much as possible, plus a spinal tap and bone marrow aspiration. We won't know if this is leukemia-related until after the pathologists look at everything. Right now, we know it's the source of his pain and had he not been eating his lunch, the surgeons would have removed it today. He'll most likely be in PICU for a couple of days and then hopefully back to the Aflac floor we've called "home away from home" in the past.
We're asking for prayers for his surgery tomorrow and for the outcome of the test results. I've been told that he'll most likely need some type of medical treatment (radiation / chemo ) to address the tumor since we don't expect them to be able to remove 100% of it. Beyond that, we don't know at this point. I'll post more information as soon as we have it.
Thank you so much and God Bless!!