Feb 21 - 23: Days +4 through +6

Just a note: I started writing this on the 21st and then it bled into the 22nd and now today is the 28th.  Instead of going back and editing my writing to correct the dates for what I have already written, I'm leaving them as is, but I will put dates below to give you a better idea of which days(s) are which.   The other days not in this post will be published soon.

Tuesday, February 21st:  Day +4
Maybe it was the change in rooms, but neither Chase or I slept all that well last night. I was up later just to have a little quiet time to myself and noticed he was tossing and turning a great deal. Even after I went to bed, he woke up twice, which he hasn't done lately.

Needless to say, I did not want to get out of bed this morning. I didn't feel completely like myself, which may have been why. My sinuses have been really bothering me for the past three weeks, and I've felt like I'm holding off an infection, but just barely. When I'm in the hospital, I feel a lot better though. The filtered air and the positive pressure the rooms have makes a huge difference. After thinking about it though, this new room has a different system than his BMT room, which may account for why i have this "off" feeling. The air runs constantly and you can feel it. His former room wasn't like that and actually was considerably warmer because of it. I don't feel bad, but I also don't feel as good as I did yesterday.

And the same goes for Chase. I wish I could blame the room change on it, but his counts are continuing to drop. As that occurs, getting sick is inevitable. His doctors had not arrived for rounds yet this morning when he got sick to his stomach the first time. I woke him around 11:40 to do his mouthwash and he asked for some water first. He barely consumed any before the nausea overwhelmed him. I hit his button (for nausea) and then placed my fingers on the food line near his nose, hoping it would stay in his stomach. He told me to call the nurse and said he felt like it wasn't in place.  Thankfully it was. Getting sick did not help his already raw throat though.

Chase with the NG tube.  Note how
puffy his lips are. They'll get worse, too.

The BMT docs dropped by around noon and let me know his counts are still dropping, and that the drainage and pain would probably grow worse.  Granted, I already knew this.  I'm  not a novice, but it is still the last thing you want to hear from them.  They did believe Chase was overall managing better.  I've been saying for days that I felt like he was doing better than last time, so it was good to hear it come from them as well.  They asked if Chase needed anything before they left, and he said no.

I just wish they would have come a couple of hours later.  By 2:30 he woke up rather suddenly and vomited, but not enough to bring up his NG tube.  I noticed blood, darker so it wasn't fresh, mixed in with the mucous, which told me right there what was making him sick.  He grabbed the edge of the bowl until his knuckles were white because he was trying to dislodge mucous from his throat, causing him a great deal of pain in the process.  He spit it out and once again it was dark, but I noted some brighter red, meaning it had not hit his stomach yet and was picking up blood in his throat and GI track.

It was after he spit that last bit that he really got sick.  The force of it was enough to send his NG tube up and through his mouth, which meant it was in his nose and now coming out of his mouth.  Mildred, a CHOA 20+ year career nurse and a saint, was profusely apologizing.  She had gone up on his feeding amount just  by a teaspoon or two about 30 minutes before that happened, and was trying to shoulder the blame for upsetting his stomach, which I thought was sweet of her, but the mucositis was the perpetrator.

I did ask if they could go up on his morphine level since his button does not seem to be helping as much as it once did.  They adjusted it so he could receive a larger amount over over a specified time period.

Once his dose went up, he was out for a while.  I saw Rebecca sitting at the desk, who was not assigned to us - not sure what happened there!  Anyway, she said to tell him she wold walk with him if he could get up.  I told him a really pretty girl wants to walk, someone he called "hot".  He barely opens one eye, with the other partially closed (Popeye) and says "Hartley?"  She's one of the physical therapists Chase has worked with most extensively, so I  though it was funny he picked her.  I then let him know it was Rebecca.  That didn't seem to be any more of a motivator though, so he did not do anything physical related other than getting into his recliner and doing his two hours of sitting up.

Pain by this time, was a 7 or an 8 in his throat whenever he had to swallow.  I went and got him ice chips to suck on for a while.  I could tell exactly when he swallowed the melted water because his eyes would pop open and the tendons in his neck would tighten from the pain.  I really, really hated this for him.  Even with the morphine his pain was evident.  The only upside to this is that it wasn't constant.

Mildred suggested getting him a couple of mouth washes that may help him out.  One specifically targets ulcers, while the other is a pharmacy-created concoction called "magic mouthwash".   Chase wasn't interested in trying those right now.  He slept and slept, not asking for anything and when he did it was growing more difficult to understand him.

Rebecca stopped by his room to check in on him and he did his little "Popeye"look when she spoke to him.  I noticed she was kind of shaking her head at his condition, especially after seeing his mouth.  In a nutshell, she said she knew he would be sicker this time than last, but she didn't think he would be this sick, this soon.  From my perspective, I felt like he was doing better than last time - at this time.  She looked at me and said, "No, he wasn't this sick until over a week after transplant."

"I guess I'm handling it better this time?" I asked.  She nodded.

I have to admit feeling a bit dejected after hearing that, but in looking back, she's right.  His transplant last year was on a Tuesday, and it was well over a week later that he really started to take a downhill turn.  What we are dealing with this time is also quite different.  He had mucositis last time with some bleeding, but not to this degree and his lips were never like this.  It was the debilitating fatigue and constant vomiting that plagued him because of the drainage this time last year.  I suppose because on my end of things I've been able to handle it better that I was mistakenly applying it to him as well.

Unlike Sunday night when he was willing to watch a movie with me, tonight (Monday) was very different.  All he wanted to do was sleep.  In fact, I would say he is now sleeping about 20 - 22 hours a day.  It is not what I would describe as a completely restful sleep with all of the activity and noise that is constantly going on both in and just outside of the room, but this is all he feels like doing.  Granted, between the morphine drip/pump and the Benadaryl/Ativan (BA) drip/pump, he's pretty much toast.  I like how the BA pump has been helping to manage his nausea this go around, but honestly he seems to get more and more irritable the longer he's on it.  I've noticed in this in the past with Ativan or I've at least attributed it to Ativan.  I would love to try and do without it, but right now I know he needs whatever peace he can get from nausea.

Tuesday, February 22: Day +5

His lips had started really swelling along with his face, but not proportionally.  On Monday, his lips looked like he could give Angelina Jolie a run for her money.  They were also extremely chapped, which meant keeping plain ol' vaseline on them.  I asked abou him using Carmex (Cherry flavor) that I had picked up for him at the store since he liked it.  Rebecca was the one to tell me that it doesn't work and it actually make you lips more chapped so that you have to use more.  Interesting.

The picture of Chase posing was taken Tuesday night.  If you compare it to the other photo taken two days before, you can see the difference in his lips and in his face overall.  Not only are his lips swollen, but he's retaining fluid, too.

I told him about his lips and then he asked me for a mirror.  His eyes got rather large after seeing what they looked like.  Then he told me to take a picture of him, which I did.  Then he said, "Take another" and started striking Dr.Evil poses.  Even as bad and as tired as he felt, he still had a few minutes of energy to be his ol' goofy self!

News about Chase's Donor
Today, one of the Bone Marrow Team members, who I had not met, came by to see me.  She said her name was Christa, and she is responsible for actually enacting and locating a donor for those needing un-related matches.  I have been hoping to learn at least the gender of Chase's donor for a while now.  It gets tedious when you have to say "he or she" all of the time, but I certainly never thought we'd find out.  I was wrong.

Christa told me Chase's donor is a 38 year-old white female.  Finally I can use an accurate pronoun!!  She also told me Audra, who used to be the BMT coordinator but returned to being an Aflac Nurse, was the courier who went to retrieve his marrow.  However, she told me Audra was sworn to secrecy.  Of course, that killed me.  If they sent one of our nurses to get Chase's marrow, then was she relatively close by?  But I can't ask Audra if she flew or just drove.

Anyway, Christa said that the only thing she knows about Chase is his age, sex, and why he needed the transplant.  She doesn't know this was his second transplant or his third battle against leukemia.  I asked if I could tell her those things and she said I could.  The only information I am not allowed to divulge are our names and anything that could identify where we live.

I can't begin to tell you how excited I was to learn this little tidbit of information!! I had tears in my eyes. Silly as though it may sound, I can't help it when I think of this awesome gift she gave.  Christa also told me that Audra was able to meet with the BMT coordinator at the other hospital, our donor was extremely excited about being able to do this for Chase and about the whole process.  We will be able to write to her and send cards through Christa for the first year.  After that, if both parties want to meet, we sign a waiver of sorts, and then we can be in direct communication from that point on.

Audra stopped by a little later to tell us that she wanted to burst the Tuesday before his transplant, which was the last day she worked before Day 0.  At that time, she already knew she was going to get his marrow for us, but did not know if we were aware she was the courier, so she couldn't say anything to us.  She did say, "That's why I said 'good luck' before I left on Tuesday because I already knew I would be going to get his marrow."  She reiterated the news about how excited his donor was, and had little doubt that if we wrote to her that she would write back.  Chase, who was barely lucid at the time, was still listening to the conversation between us.  Before Audra left the room, he told her "Say thank you for me."  I let him know that we would be able to do that ourselves, and as soon as he felt up to it, we would start the letter.   Now we have to come up with alias names.

Also, Tuesday...
My mom came up today to relieve me for a while, so I could spend some time with William.  I haven't seen him since the 11th, Transplant Day.  He pre-ordered a video game that came out today, which was the perfect excuse to go eat at Uncle Betty's in Snellville.  It's a great little bar-b-q restaurant behind the Target on Scenic Highway, and one of the favorite places for the boys to get food.  Since his game was ordered at Best Buy, which isn't far from the eatery, it was the perfect choice.  They have this loaded baked potato that I always get.  And when I mean loaded, it's huge and full of your choice of meat, too.

After we picked up his game and ate, we went by Wal-Mart so I could pick up a few things for the hospital.  William tried to talk me into him staying in the car.  That was a "no go".  However, for someone who didn't want to go in the first place, he ended up spending quite a bit of time in the electronics department looking at computer games.  I think he added a few to his "need to buy" list.  Both boys have money remaining from their birthday and Christmas, and I'm sure their lists are already a mile long.

Normally, I would have spent the night with him at my mom's house, but with Chase being so sick, I really felt like I needed to get back.  I'm just really glad that I was able to spend a relaxing afternoon and part of the evening with him!

After I returned from spending time with William, I realized there was no way Chase was going to be up for much of anything else that night. Since he was so utterly exhausted, I did not push for him to take a bath, but we did do his Eucerin lotion and the rest of his mouthwash for the day.  The later it gets, the more obstinate he becomes, and I am going to have to make a better effort to make him do things earlier.  When you're dead dog tired yourself...it's easier said than done.

Ulcer Ease and "Magic Mouthwash"
(in syringe) with applicator.

Wednesday, February 23 : Day +5

We are still in pain management mode, and now Chase is experiencing even more bleeding, most likely from his mouth and throat.  Thankfully, he finally agreed to try the "magic mouthwash" and the Ulcer Ease while I was with William Tuesday night.

I'm not sure what is in the "magic" one, but whatever it is, it works for him.  All I remember on the ingredients list is Mylanta and I think lidocaine for pain.   Both of the medications are of the "swish and spit" variety.  We also use the q-tip looking applicator to apply to his lips since they are cracking and bleeding.

The picture of the pink thing on a stick is not a sucker. It's a foam applicator that can be used temporarily instead of a toothbrush to try and gently keep the mouth clean and to administer medications to the inside of the mouth as well.  We've used these before to apply Biotene to the inside of his mouth to keep it from drying out.

He is sleeping tons and does not want to get out of bed for anything.  Physical Therapy (Carissa) has come by to help him walk, which he doesn't have the strength to do much of at all.  Any movement is a huge exertion of energy right now.  He sits up then he has to take a minute to breathe, and standing or walking requires assistance because at this point, he can't completely carry his own weight.

I admit to being concerned about this quick downturn in his physical condition.  At least it appears to have been quick to me.  Getting up out of his bed to sit in his chair, walking, and bathing are essential tasks, and it seems like he simply has no energy to do them, especially the last two.

The doctors are still puzzled about his lips, which are growing worse.  They are talking about bringing in Dermatology for a consult, just in case he could possibly be having some kind of reaction or infection in the skin.  His bottom lip is now easily two to three times its normal size.  Since Chase is sleeping with his mouth open at night and is drooling profusely, most of which looks like more blood than clear saliva, that could be playing a factor.  It is certainly causing his lips to crack.  We just can't keep enough vaseline on them to prevent it since he drools so much, and they dry out during the night.

During the day, he is going through the Kleenex!!  I would say about a box and perhaps a bit more daily.  We will most likely start keeping a stash in the room very soon.  With as much as he is drooling, it's not good to run out even for a few minutes.  They keep plenty in their supply closet though.  I am also having to make sure that we use the hospital pillows on top of the ones we brought from home.  He doesn't want any of his things to be ruined by drooling or blood, and the hospital pillows are disposable.

And to make today even more fun, we were told we could start moving back into to the BMT hall.  Oh joy!  My mom called and asked if I needed help, which I declined.  I did not want her to have to drive all the way back out here for a few hours since the price of gas is rising.  They ended up having a lot of nurses and techs who were helping the families move back over, so it wasn't as bad as I expected.  Once everything was here, after three trips, I realized I had forgotten to pack up the whole bottom cabinet in the other room.  They were already trying to get those rooms cleaned up for incoming admissions, so I didn't have time to unpack to free up a suitcase to use.  Thankfully, there was a cart still available for me to use.  I just haphazardly piled everything onto it and brought it over.   I SO did not want to unpack and put everything up at that time, but knew if I put it off then it would never get done.

Chase still did not want to take a bath, which was out of the question.  He had to be bathed, but it was the battle royale!  I think I ended up negotiating with him for about 15 minutes before we finally came to a compromise.  He desperately needed to do some more exercise, so I told him if he did 3 walking laps, then we could do a bedside sponge bath.  He wanted to do the bedside sponge bath and no lotion - period. After tears on his part and some tough love, I finally got him to do 5 laps pushing himself backwards with his feet around the entire nurse's station in a wheelchair.

Since he has been unable to take any medications because his mouth and throat are so painful, he's gets chilled very easily.  In order for him to do the laps, I had to bundle him up first.  Once in that chair, all you saw was a moving mass of blankets, from which legs extended.  He couldn't see where he was going, so I had to continually re-direct the wheelchair while pushing his heavy, pump-laden pole.  Every once in a while, he'd go wild on me and about run into a wall or the nurse's station and then he'd also lose the slack in his IV lines.  I could tell he was getting extremely irritated with me.

I would imagine this is how Chase feels about bathing.

Once we got back into the room, he tried to re-negotiate our deal.  He thought he had done about 10 laps, which he felt earned him a "no bath" night.  He was willing to do the lotion, but was still fighting the bath.  In the end, he got a sponge bath and we put lotion on the driest areas of his body.

It is utterly exhausting to have to fight him.  It would not matter what I attempted to bribe him with (xbox live points) and since he wasn't watching TV or doing anything other than sleep, there was nothing I could take away.  Plus, he weighs about 112, which means I can't pluck him from his bed and put him in the tub. As a parent, it does not leave a lot of choices except to be a complete and total persistent nag.  He repeats over and over how tired he is and how much he just wants to go to sleep.  I know I probably told him, "Me too" at one point.

After everything was over with, Chase asked me if I could be a bit more sympathetic but still "push" him.  That child knows how to pack my bags and send me on a guilt trip!  I told him that when he's no longer in danger of catching pneumonia because of lack of exercise or any getting an infection from unclean skin or breaks in the skin, then I could be more sympathetic.  I want him out of this hospital as soon as he is healthy enough to leave, which means I am not about to do anything that may delay his stay here over something as trivial as bathing.

Granted, if it was me, I can guarantee you I would be doing the same thing.  I can't imagine how miserable he is, which he reminds me of from time to time, but his health is non-negotiable.  He's even tried to tell me he would take the risk.  After everything he has been through...that is SO not happening.

There area couple of other guys on this unit who are 18 or older, and being that age, they can make decisions for themselves.  I spoke with one mom whose son has basically insisted on a particular date when he will be leaving here.  She told me Dr.Horan said that he couldn't stop him from leaving since he's of age, but he also wouldn't sign his release papers or be responsible for him any longer.  Yikes!  At least I still have that to hold over Chase's head.


It's now March 1st at 1:42 in the morning, so I am going to stop where I am and post this.  I will hopefully have the 24th - 26th done and posted soon.  I will go ahead and say this past week has been incredibly taxing - physically and emotionally.  Even though Chase has been and is still sleeping most of the time, I feel like I get less rest now than when he's wide awake and watching TV.  My head just feels "thick" and like I'm in a haze.  I know it's from lack of sleep, too.  You don't know how much I look forward to when he's back to annoying me with his incessant channel flipping.


Thank you again for all of the prayers!!


-God Bless :)