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!!

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!!

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!

 

 

 

 

 

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.

 

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!

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!!

September is Childhood Cancer Awareness Month

Aflac Childhood Cancer Awareness Banner
Originally uploaded by cbucky

Via Flickr:
Please use this link to join Aflac's cause against childhood cancer. www.causes.com/causes/91022-aflac-cancer-center-and-blood...

For every person who joins, they'll donate $2. No commitment other than joining on your part. 1 in 4 children are diagnosed with childhood cancer every year and 20 to 25% of those will not win their fight. Cancer is the #1 killer of children in the United States.

In 2007, the NCI reported that the combined extramural and intramural funding for childhood cancer research was approximately $180 million. Other more conservative estimates, put childhood cancer research funding as low as $30 million annually. NCI allocated $572.4 million on breast cancer research in 2007.

On average, 67 years of life is lost when a child dies of cancer, yet pediatric cancer funding lacks in comparison to other adult cancers.

Chase, was diagnosed with Acute Myeloid Leukemia, an adult leukemia (in March 2009). Since then he's relapsed twice, endured 10 debilitating rounds of chemo, has had two bone marrow transplants, has spent over 300 nights in the hospital, and another 6 weeks away from home in the Ronald McDonald house post transplant.

We thank God that he's on the (slow but steady) road to recovery and anxious to move forward with his life. We're also so very blessed to live near the Aflac Cancer Center where his oncologists are active researchers, working diligently to find better treatment methods and cures for pediatric cancers.

Prior to all of this, I had no idea what the levels of funding were for pediatric cancers in comparison to other adult cancers. I wasn't even aware there was a childhood cancer awareness month. So, I'm spreading the word. I'm asking that everyone who reads this please do the same. I don't have Aflac insurance and I don't work for them, but I am so impressed by their efforts and their dedication to supporting research and treatments for children like my son.

Thank you and God Bless!

Day 61: Biopsy, BMA, & Spinal Tap

Today, Chase is back at CHOA for a bone marrow aspiration, a spinal tap, and a biopsy of his esophagus, stomach, and lower intestine. We knew he would be getting the bone marrow aspiration and spinal tap at some point, but the need for the biopsy is due to possible GVHD.

GVHD or Graft versus Host Disease occurs when the donor's marrow begins to see the recipient's body as "foreign" and sends out cells that basically begin to attack the tissue. It can present itself via a rash on the skin, nausea, through diarrhea, loss of appetite, weight loss, and more.

With Chase, he has been dealing primarily with the last two. In the first week and a half after discharge, he lost 5 lbs. He lost a bit more weight after that, too and he really didn't have the desire to eat like he normally does. His appetite at this point wouldn't be anywhere near normal regardless, but his is about half of what I would expect it to be. They expect him to consume over 2000 calories a day. The most I have managed to get him to consume is 1600 to 1800.

Last Thursday, they sent Chase to a GI specialist who basically decided it would be best to "scope" him. The only true way of determining GvHD is through tissue samples. They scheduled it for today, April 19th, so he could have his bone marrow aspiration and spinal tap at the same time.

Over the weekend, his appetite further decreased. He has complained in the past about various foods and drinks irritating this throat, and this seems to have gotten worse.

We went to the Aflac Clinic this morning before heading over to Day Surgery. His blood counts have risen, which is great news. Last week almost all of his counts, his white blood cells (WBC) and his neutrophil count (ANC) in particular, had fallen quite a bit. The doctors were not alarmed by it, but when the numbers are low to begin with, I don't like seeing them slide. Today his WBC count is 3.31. It had been 2.86. This, along with the rise in his platelets going over 60 for first time on their own were a welcome sight.

His weight, however, was not a welcome sight. He dropped 3lbs over the weekend and is down to 105! I knew he had dropped weight. He just was not eating well and Sunday his stomach was giving him issues. He threw up and had diarrhea. My heart sank when these symptoms started since they also point to GVHD.

Let me say it is NOT uncommon for a transplant patient to get GVHD. In fact, it happens in about 80% of patients if I am recalling what I read correctly. You do want a bit of GVHD because it can help the new marrow fight against any possible new leukemia cells in the future. My heart sank because I hate seeing Chase feel like this. I hate feeling like a nag trying to get him to eat. Most of all, I hate not being able to do anything about it.

Dr.Chiang is having us come back in on Thursday with the hope we will have the results back and can begin treatment if he does in fact have GVHD. They will start by giving him a steroid. Beyond that, I'm not sure what they will do. At least a steroid might kick start his appetite.

What we are praying for is that Chase can be diagnosed and treated quickly. I pray that should he have GVHD that it will be mild and not further compromise his health and recovery.

Please send up prayers! I'll let you know the results as soon as I have them.

And just to leave you with a smile, I'm including this picture. Chase gets an arm band every time he comes in to clinic and for some reason never takes them off. A couple of these are from three weeks ago! There are 8 total but I have a feeling they may cut most of them off while they have him sedated.





- God Bless :)

Wednesday, March 23: Day 34

Today started early - at least early for Chase.  Carissa stopped by around 10:00 am this morning with an intern from Georgia State.  Boy, did I expect him to fuss and try to negotiate his way into sleeping later.  Oddly enough, he didn't.  He was slow about getting up and putting on his shoes and mask, but he did it.  And without his walker!! I am SO incredibly proud of him for putting it to the side.  He's been very dependent on it these past few weeks, so this is a huge move for him to go without it AND not not need to lean on someone else as he walks. 

She asked me if he had told me about walking his laps yesterday.  I just grinned, because Chase made sure I knew about them last night.  I could tell he was very proud of his accomplishment.  He rarely tells me about things like that, so being able to do 10 laps without a walker for the first time yesterday and only leaning on her twice was an incredible step forward for him.  She was obviously proud of him, too.

Oh, and the other dance I forgot about was the lawn mower, which she gladly demonstrated along with the sprinkler and shopping again.  Chase likes all of his physical therapists a lot, but she's his favorite.  I think she's also the toughest, but she has fun with him, too.

She talked about playing dodge ball with him again, which was something I wanted to see for myself.  I threw on some clothes and got my phone to take pictures, but the ball wasn't in the playroom as they thought.  So, I headed toward the family room to get myself some orange juice, but didn't make it that far.  Chase asked me to come walk with him, and then I found myself in a head lock!!  I tickled him and eventually got out of it, plus he needed a cup of water to carry with him, too.  But he got me right back in the head lock again.   The boy is stronger than he looks.

I tried tickling him, but he wrenched his arm even tighter.  Carissa and a few others seemed to get a kick out of him holding me like that.  But I ended up getting the last laugh when I picked him up (like carrying a bride).  Chase was caught very off guard, which I loved!   "I did NOT know she could do that!"  Ha ha ha.  He will probably think twice about putting me in a head lock again.  But once he gains a few more pounds, I will not be attempting that again.  I can just see injuring myself.

Poor Chase thought after his ten laps that he would be home free.  Not so.  Carissa blocked his entrance back into his room and made him do squats.  Even behind his mask, I could tell the kind of look he was giving her.  I think she could, too.  He told her, "I've done my ten laps."  Her reply: "I never said, you ONLY had to do 10 laps."  I just love her!

Once he had finished his squats, he turned around really quick, but once again she beat him to the door and made him do some stretches to work his hamstrings.  Or at least that's what I thought he was working.  Regardless, he did them.  He knows her well enough to not quibble and do what she asks so he can get back into his room.

He was still fussing almost an hour later about how much she made him work and how worn out he was.  He even told his nurse, Katie, that if he didn't drink enough today, she needed to tell Carissa it was her fault.  She wore him out SO much, he couldn't even drink anything. 


Guess who popped into the room less than five minutes later?  Yep, Carissa!  Katie just told her what he said, and the look on his face was priceless.  "What are you doing here?" he demanded.  She said, "I'm all over the place and I can hear everything that's going on."  After she closed his door, he shook his head.  "I SO did not expect her to be out there."


The rest of the day has been pretty low-key.  His fever has stayed in check thankfully.  We are very much hoping that he can be discharged by Friday.  He's been drinking fairly well and ate some mashed potatoes.  A little bit later, he asked what food I had here.  Not finding any of it appetizing, he asked about spaghetti.  Room service makes it, so I ordered that for him, which he ate more than half of! I was surprised, but elated that he ate as much as he did.  He finished his sweet tea and even ate a couple of bites of his strawberry yogurt, too. 


Elyse, the physician's assistant, came into his room around 5:15 and had this twinkle in her eye I don't recall seeing before.  She was smiling really big and said, "I have some great news!"  She then proceeded to tell us that Chase's marrow is 100% his donor's marrow!!! 

Praise the Lord!!

 None of his old marrow - or William's marrow (we could never find out since they're identical), is producing new cells.  It's all from his 38 year-old female donor!! 


First, I had completely forgotten we would get these kind of results at this time.  I was shocked.  I'm glad I didn't know or I would've been on pins and needles waiting for the results!! He still hasn't switched completely over to being B+ blood type yet, but it's definitely ONLY her marrow that is working. 


This doesn't guarantee the possibility of a permanent remission, but from where I sit, 100% at only 34 days post transplant is phenomenal!!  I don't know what the average is.  My mom just told me another boy who is here and had a transplant the day before Chase did is only at 60%.  According to her, the boy's mother said they were told he would need another transplant.  I'm not sure if his was a stem-cell or actual bone marrow.  I haven't met her yet, but I will be keeping them in my prayers.  They certainly have all of my sympathy if he does have to go through another one.  Hearing that news made my appreciation for Chase's engraftment results go soaring high. 


We have truly been blessed!!


I'm going to go ahead and call it a day.  Chase has been napping for a while and he needs to get up and take a bath.  The last thing I need is for him to try and stay up late tonight!!


Still taking things one day at a time!

God Bless!



Oh, these were taken the evening of March 19th.  When he starts mugging for the camera, that's a sure sign of recovery!

This is Chase's "shiny happy" face.  It's one of his signature poses.

And this one?  I'm not sure what I'd call it.  His "sauve" face?
Regardless, he had a good time posing.  And the facial hair was some he has managed to keep up until now.  I'm not sure if it will all fall, but I'm sure he's hoping to keep what's left above his lip.

Wednesday, March 16, 2011: Day +27

Wednesday, March 16, 2011  Day +27

As I mentioned in my previous post, I woke up at 6:45 this morning and realized I had fallen asleep on the sofa with Chase.  It was something of a tight squeeze to say the least, but I felt like I slept pretty well in spite of it.  Chase certainly seemed to have had a peaceful night.  I don't recall him waking up coughing or waking up for any reason for that matter.

I got back in my own bed, but was only in it until around 8:00 am.  His nurse, Stephanie, was doing her morning vitals and woke up enough to realize I was no longer with him.  That didn't last long.  I was gently coerced into going back to the sofa with him where I fell asleep once again.

Carissa came in about 10:45 to say she would be back around 11:30, which really meant around 12:00.  With Chase, he works much better if you can give him a heads up about something he doesn't want to do. Today, he really didn't want to walk.  He complained that he was exhausted and had no energy.  He said they gave him too much Ambien the night before and his head was messed up.  He did look like he could fall over back asleep, but staying in bed simply wasn't happening.

Carissa came back a little after noon, and his walk with her was delayed a bit by Elise coming in to see him and Stephanie who took him completely off his pole!!  He put on his black jacket and his mask, which only left one eye visible if he lifted his head up enough.  He really didn't need to see though since he had an around my shoulders and had his other linked through hers.  She loves to kid around with him and said she felt like his prom date.  That got a little laugh out of him.  The subject of prom brought up dancing and demonstrated a few dances that I only wish I had video of! She's so funny.  A couple of them were the "sprinkler" and the "shopping basket".  I'll have to see if I can get her to demonstrate a couple of the others for me again.  Chase even gave her his version of the sprinkler.  If he's feeling up to doing something silly like that, he's got to be feeling better!

OT came by about the time Chase realized he had misunderstood Carissa earlier.  She said, "I'm going to push you to do seven laps today," to which he said, "Thank you."

He thought she wasn't going to push him.  Once he realized his mistake, he jokingly called her a "meanie".  Actually, both of us since I agreed with her. She then said she wasn't a meanie, she was a terrorist.  The OT woman asked, "What is the difference between a therapist and a terrorist?"  Her answer: "At least you can negotiate with a terrorist."  I think Chase agreed with her, but I loved it. I wouldn't be surprised if he called her a terrorist the next time he sees her.

Even though her rested a lot between each lap, he did complete all seven!  He even had his own cheering section at the nurse's station.  Cute nurses, too so what 15 year old boy wouldn't love that?

After laps, he sat in the chair for a while and napped shortly and then ate some yogurt.  He has not drank at all, which is worrying me some.  They want him consuming a liter a day since he's off the pole.  If not, they will put him back on it and it could delay his being discharged.

I think the Ambien is really messing with him.  He keeps telling me he feels very tired, but is also highly aggravated that he can't actually fall asleep.  I'm not sure why he's having this kind of a reaction to it, but hopefully this feeling won't persist.  If it is the Ambien, we'll find something else for him to take.

With the TV on, he napped a little while watching it.  Then he asked to finish the movie he started with his Dad, 127 Hours.  It turned out he did not have much left to watch.

He was again plagued with diarrhea.  This is really gross, but I told him what he produced looked like Brunswick stew.  His reply? "Yum."  Ewww!  It's an awful topic to describe one's "output", but the nurses and doctors ask, especially if he flushes it by accident.

I was walking to the family room to get Chase a drink when Brittany, one of the Child Life Specialists asked me about my drawings on Chase's door.  She was interested in what I used, so I showed her my crayons, which I ended up lending to another patient named Nikko.  Apparently, he likes to draw and wanted to decorate his door.  I was more than happy to share them with him, and saw his Dad outside of his door starting to draw the outline of his name a couple of hours later.  The topic of the crayons brought up the signs I have on his door, which the nurses and doctors have enjoyed.  Elise was trying to recall the sign I made to go above Chase's toilet last year.  He was having trouble, because of the Ativan, remembering NOT to use the toilet, but use the urinal pitcher instead.  I told them I would be happy to leave them with a PDF copy of it.  That's when Elise said, they'd love to have one for the "hat", too.   That's what is used to collect #2 and #1 adn #2 for girls.  I may have to see what I can do.  They're definitely fun to make when I'm in the right mood.

I got really frustrated tonight!! I was trying my best to respond to a couple of work emails, but I'm over my mailbox size limit and they wouldn't send.  I spent probably 30 to 45 minutes emptying out my Deleted Mail box, Inbox (some of it), and Junk Mail box, but I have to wait for the server to let me back in.  I even lost an entire email I had written!  I hit send and it didn't go, but it also did not save it.  So frustrating.

My mom came up tonight so I could spend the night with William.  I didn't end up leaving the hospital until really late though, partially because I got sidetracked with the aforementioned email issues.  Once I got to her house, I found William in the office playing Homefront, a new game that came out yesterday.  He has about run out of all of his birthday and Christmas money.  My Mom reminded him of that today, but he wasn't concerned.  He told her he would have all of the games he wanted because there weren't any other good ones coming out until later Fall, and it would be time for his birthday by then.  I guess he's got it figured out, but he better not come to me for a loan.  He'll have to go to Chase who has yet to spend a dime.

So, I'm sitting next to him, typing this, while he plays his game.  He's got the TV on as well, and still manages to make comments about it.  I don't know how he keeps up with both.  Oh, and he's talking to someone online, too.  He and Chase have gotten quite adept at quickly turning their microphone on and off.  Why? So, I don't accidentally say something that could be highly embarrassing.

Regardless of his divided attention, sometimes it's just nice to be in the same room with him for a change.

Still taking things one day at a time.

God Bless!

Tuesday, March 15, 2011: Day +26

Tuesday, March 15, 2011: Day +26


Well, last night was not restful at all, and this morning didn't start any better.  Without warning, Chase woke up while it was still dark outside, not sure of the time, and got sick.  I'm fairly certain it was the oral Cyclosporine he had taken the previous evening that did it.  He hasn't really eaten anything of significance, and now taking meds on an empty stomach that isn't used to food much less chemicals? Not a good combination.

I felt so sorry for him.  He looked absolutely miserable.  He got back into a restless sleep, but his IV pumps seemed to be going off like every five minutes.  Yes, I'm exaggerating, but that is what it felt like. Right about the time, I could feel myself drifting off, either a nurse would come in and need to turn on a light or a beeper would go off.

Honestly, I don't know if it's me, but it seems like every other night around here stinks when it comes to getting a good night's sleep or something resembling it.  anyway, I left his nurse know that he had vomited and she gave him some Kytril followed by Benadryl.  I knew the Benadryl would be good for him, just so he could at least be knocked out, which it did.

Around 8:00 am, his nurse brought him more Cyclosprine.  He has to take two doses a day of 7 capsules each.  I could tell he was less than thrilled with the thought of taking it again.  There were two other meds he was supposed to take, but he expressed his concern about getting sick again, so Katy told him he could wait another hour.  She also gave him another dose of anti-nausea meds.

Chase has been miserable, feeling all over generally not right, and extremely fatigued the entire day.   Between this morning and about 3:00 this afternoon, Chase has been suffering from diarrhea.  Around these parts, they like to measure everything that goes into Chase (food and beverages) and also his output.  He's got these things underneath the toilet seat that cover half of the toilet each, called "hats", inverted hats at least.  They're meant to catch his "output".  Not only that, but every time he goes to the bathroom, no matter if it is #1 or #2, the nurses are the ones to empty it.  They also have to take note of all of its characteristics.  I'll let you use your imagination on that one.

Elise, our physician's assistant, came by and spoke with me around noon.  I asked her about the diarrhea and she said right now we don't know if it is because of the adjustment his stomach and intestines are going through or if it is a symptom of GVHD.  At this point, they are very conscious of any of the latter. She asked if he had any rashes or if his skin was itching, which can be another indicator.  His skin is peeling, especially at bath time, but that's a result of the chemo.  It's weird actually.  It's almost like he's gotten a sunburn from the inside.  After bath time, I have to clean out his tub or else the Aveeno oatmeal will stick.  Along with the residue, there have been pieces of dead skin he's shed.  He made sure to point out the ones that are larger than the others.   For some reason, he likes to peel dead skin.  Maybe it's a boy thing.

Carissa came by at noon to help him go around and do his laps.  He was so wiped, and he asked her for another forty-five minutes, which she gave him.  Of course his forty-five minutes weren't completely peaceful.  Just because you decide to take a nap around here doesn't mean people will stay out of the room.  Lucky for him, Carissa didn't come back until nearly 2:00 PM.  He reluctantly got up, but very slowly.  We only made it half way around the loop when Chase took a seat in the chair patients can rest in.  He leaned over his knees and started crying, begging both Carissa and I to let him go back to his room.  I felt awful. Worse than awful.

Now Carissa is persistent, but she didn't push him and I'm glad.  I certainly didn't want to push him either.  I had tears in my own eyes, too. I could tell he was genuinely upset.  We got him back in bed and Carissa asked if she could give him a hug.  He said 'yes'.  Later, one of the nurses told me how Carissa had to fight tears herself.  That's what I love about the people who work here.  They're excellent at what they do, and they truly care.

After she left the room, Chase wasn't any better.  I asked him if I could cuddle with him and he nodded.  I held him and he started crying even more.  Poor guy couldn't tell me why.  He said he didn't know if he was sad or scared. Then he mentioned that he was really feeling both last night.  I knew he was really disappointed when William didn't stay, so I understood him being sad.  Also, he's ready to get out of here - past ready.  But why he felt scared, I couldn't understand. I simply held him and said whatever words of comfort I could think of.

Once he got to sleep, I started wondering if coming off the morphine was affecting him.  It certainly makes him say and do odd things as well as hallucinate, so I wouldn't be surprised if his first day off of the morphine would be a transition day.  Oh, and they don't simply turn him off cold turkey.  Over several days, they take his continuous drip level down a notch until it's off but he can still use his button.  It's after they reach this stage that they will turn it off, however he can have pain meds if needed at any time.

For about two hours, I let him sleep. His Dad was expected to come up and watch a movie with him later in the day, and he needed the rest if he was going to enjoy the visit.  I could tell he didn't feel well at all, but he still wanted David to come.  I was relieved he decided to come up very early in the evening.  Given how Chase was today, I wanted him to be able to enjoy the visit, so earlier was better.

I was also supposed to leave tonight to stay with William and my Mom would come up around the time David planned on leaving.  Before his Dad arrived, Chase asked me if I would stay at the hospital.  I had a feeling that was coming.  I called William to let him know his brother was having a very bad day and asked if he would mind if I waited until Wednesday to come home.  He immediately told me that he understood.  He's a great kid!!  I felt bad that I couldn't come since I told him the previous night I would, but he took it very well.

David arrived around five and brought the movie 127 Hours.  The two of them talked for a short while before starting the movie.  Chase was enjoying it, but almost at the end, he looked as if he was about to fall asleep.  David said he would leave it with him so he could finish watching it tomorrow.  Chase later told me he felt bad about not finishing the movie with his Dad.  He's a thoughtful kid like that! 

It was right around eight by this time.  I wasn't going to push him to walk any more laps, but a bath was non-negotiable.  I think it was around six when his nurse took him off his IV meds completely for the first time since February 11th!  They were to hook him back up at ten, but just the four hours of not being tethered had to feel great for him.

Eight o'clock was cyclosprine time again.  He asked for Kytril before he took the pills, which meant temporarily going back on the pole, but only for about 30 minutes.  He ate a bit of yogurt to get something on his stomach, and then took the meds.  Thankfully, he didn't feel sick to his stomach.  I got caught up in watching TV with him, and at 9:15 I realized he had to get that bath before they hooked him back up for the night.

He tried to get out of it, which I expected.  I was firm though.  He even tried to talk me into doing it later that night, which I refused since the tub was already filled.  Funny thing was after he got out of the bath and was walking back into the room, he said, "I feel a lot better."  I knew he would after relaxing in some warm water.  For the rest of the night, he was more alert and talking a lot more.  He seems to get a second wind sometimes at night. Where it comes from, I have no idea.  He watched a bit of TV between closing his eyes every once in a while for a few minutes.

The best news of the night???  NO FEVER SPIKE!!! Yay!

Since he slept so poorly the previous night, I asked his nurse to see if he could get Ambien, which he did.  He took the pills around 10:45, but it was well after 11:00 before he succumbed to the meds.  I crawled into bed - his bed since he chose to stay on the sofa, and was there all of fifteen minutes at the most when he asked if I would come stay with him for a while.  Let me tell you now, the sofa is not that wide.  Then again, Chase only weighs 110. I snuggled in behind him and the next thing I knew it was 6:45 in the morning.

I was very thankful he had a restful night, even more thankful and surprised that I managed to as well. I hope today, Wednesday the 16th, is better for him.

Still taking it one day at a time...

God Bless!

Saturday, March 12, 2011: Day 24

Saturday, March 12: Day +23

The best thing about the weekends here at Egleston? No doctor parade!! We can actually sleep in and that's exactly what we did.  I was up late writing and posting to Chase's blog until about 3:00 am, so I didn't actually get out of bed until well after noon.  Trust me, it's not like sleeping in at home.  There are still nurses, doctors, and others coming in and out of the room plus his pumps beeping, but overall last night was probably the best sleep I've gotten in a while.  

Chase woke up on his own not long after I did.  He was very bright-eyed for a change and asked me to turn on the TV almost immediately.  I was pleasantly surprised.  If he's showing interest in watching TV, that's yet another sign he's getting back to himself. 

Although he isn't eating solid food quite yet, he did attempt today to eat some yogurt for the first time and finished almost all of a small cup!  I was really thrilled, but was also praying he would keep it down.  That mucositis is still causing him to have an awful bronchitis-like cough and he is bringing up "gunk".  It is no where as severe as it was before, but the drainage can still make him sick.  So, when he tries to eat, he has to do so in very small amounts and slowly.

Rebecca is here today and doing her best to try and goad Chase.  It isn't working out too well though.  Yes, he's feeling better, but not enough to be snarky or poke back at her like I'm used to seeing between the two of them.  I have a feeling it won't be long though.

And a day with Chase wouldn't be the same if he didn't try to talk me out of walking or some other chore! He asked if he could just do his bed exercises.  No. So up we got with his walker and me pushing his pole.  He did 5 laps without resting though!! I was so proud of him.  His bones are still achy from the Neupogen stimulating his marrow, but hopefully that will pass in a few days since those doses are over.  I'm sure he would have walked further had it not been for that. 

Oh, and since it's Saturday, this is his CVL dressing change day.  His most favorite day of the week - not!  Rebecca is training a nurse to work on the BMT side, and she brought in the kit.  She asked him if he was ready to do it now.  I just waited for what I knew his response was going to be and I wasn't wrong.  He asked her what time it was and then said he's prefer to do it a little later.  She started laughing, then told him, "Rebecca said you would say that."  

I could tell he was less than thrilled with the idea of her doing his dressing change.  He is highly sensitive about this procedure probably more than anything other than having to get an IV put in.  After she left the room, we started doing his laps.  He muttered something about wanting Rebecca to do it.  I told him  he should ask. Well, while we were out, he ran into Rebecca and sure enough he did ask, referring to the nurse as "that other girl."   She hesitated, then told him if he could get his laps done quickly she'd do it. "Only for you Chase."

He completed those laps in no time, too!

I don't know if I have mentioned it yet or not, but Chase has these bumps all over his body, which appeared after he went through those really high fevers.  They are small, raised, and look almost like dew drops on his skin, but the doctors aren't calling them blisters although if they were lanced, some liquid would come out of them.   They haven't bothered him at all, but he also did not get a good look at them until Rebecca was changing his dressing.   They are on his neck and torso mainly, and he started picking at them. I wasn't in the room at the time but she ratted him out as I walked back in, telling me she warned him not to pick at them because he could open himself up to infection. He insisted he wasn't, but I made he put his shirt back on just to shield himself from the temptation.  That would be all we'd need is for him to get an infection because he's picking at his own bumps!

Oh, and she left Chase a little heart on his dressing when she changed it. I had to snap a pic since he's such a heart and flowers kind of guy (said with sarcasm). Had I thought about it, I would've suggested a flower or something. She's been trying to harass him for the past few days but he just hasn't felt up to getting back at her. If he's still here when she works her next shift, he may be more back to his normal self. 

As she left, he did brag to her that she couldn't write or draw anything "smart" on his door because she would have to rip down or erase what I have put up there. He seemed fairly smug about it, but she replied, "Oh, I have my ways." He didn't seem to believe her though. Her answer? "Post it notes."

Right at shift change tonight, Rebecca asked me if I still had the pictures of Chase's lips, which of course I do.  Amy, our nurse for tonight, did not see them when they were as bad as they were.  I really didn't think anything about the request.  I figured nurses may want to share things like what Chase has gone through since it was kind of uncommon.  

It turned out Amy has a brother who had AML and was transplanted here 5 years ago.  She had only been working here for 6 months and was newly graduated from nursing school when he was diagnosed.  Plus, she was his donor.  Rebecca had me show her the pictures of Chase's lips because her brother went through the same thing but worse.  The dead skin and clotted blood in his mouth started to block his airway and the oral surgeon had to cut it out.  Chase kind of cringed at that, thinking it would be painful, but she said since all of the skin was dead, he didn't feel it.  She was amazed at the pictures.  Her brother had taken some of his own mouth to "gross out" his friends.  She didn't have any with her tonight, but I hope she brings some in.  I would be very interested in seeing them. 

Everything was going really well up until Chase started getting warm around 6:45.  He spiked a fever again, but only 38.5, which is the minimal temperature.  I was still worried it would persist after the Tylenol wore off, but it didn't.  This spike was just like the one he had before where it comes in low and then goes away after the Tylenol.  Weird.

In spite of once this, he was still was feeling better than I would've expected, especially once the Tylenol took effect. He fought me on the bath, which wasn't unexpected though. He ended up getting a chair bath since he was shivering so much, but it is preferable to no bath at all. The bathroom is far warmer than the room itself, so we did his lotion in there and he didn't complain about it. Why we didn't start doing this from the beginning I don't know.

It was a good thing I was able to give him a good coat of it because his skin gets horribly dry very easily. Also, because of all these fevers those clear bumps give his skin a rough texture.  I don't know if the lotion helps or not but overall the texture improved afterward.

He thanked me afterward for letting him get the chair bath, and I thanked him for not being too terribly stubborn. After he was dressed and back in his bed, he wanted to watch a movie.  I didn't have anything in the room he was interested in watching, so I logged into Netflix and we found a couple of Adam Sandler movies he hasn't seen.   The first was over at about 12:30. He insisted on watching another, so we were up until around 3:45 am.  I swore I wasn't going to let him stay up to watch the second one, but before I knew it the movie was over.

Overall, I am very happy to see Chase's progress.  The fevers are disappointing because it further delays his discharge, but I can still see improvement, which is the most important thing of all!

Thank you for all the prayers and support!!  He's on the path leading out of here.

- God Bless :)