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 :)

Wed - Thursday, March 9 - 10, Days +20 and +21

Note:  Today is Wednesday, March 16th, and I'm getting so far behind that I'm not sure when I'll be able to write up the days between these and the previous post.  I thought I might as well get this up since it's seven days old. :) Thank you for the continued prayers!!!


Wednesday, March 9: Day +20

As tired as I was Tuesday evening from sinuses acting up, I decided to stay the night at my Mom's house again. Chase has been progressively getting better, so it was nice to not feel this highly urgent need to go back and be with him.  The bonus of course is that I got to spend an extra evening with William!

However, at 6:00 am, which is an unnaturally early time of day for me, I woke up coughing and my throat felt like it was burning.  Oh boy! I got up and immediately went into the kitchen, pilfering through the cabinets to see what kind of medicine my parents had.  Everything I had brought with me was in the bedroom I was sharing with William, in a plastic bag, and I didn't want to wake him up going through it. Thankfully, I found Benadryl, pain reliever, 24 hour allergy medicine, cough drops, and Mucinex.  I hate using Benadryl, but I knew if I didn't, the drainage would most likely get worse and then I could end up really sick.

I haven't taken Benadryl in a very long time.  I completely wipes Chase out when he has to have it, and it did the same for me.  Two little pills and I was out until about 1:30 in the afternoon.  I probably would have gotten out of bed earlier, but Maya, my 60lb Doberman-Beagle, jumped up on the bed with me and curled up against my chest.  I wrapped an arm around her and she lulled me back to sleep.  I think she knew I needed a little TLC.

After getting out of bed,  I was till not feeling all that great though, which really worried me.  How can I be at the hospital if I'm feeling like this?  Even though he is improving, he is still very high maintenance at this point.  And I mean that in the  nicest terms.  He simply doesn't have the energy to do a lot of the simple things for himself, so he needs someone who can "gofer" for him.

My Mom told me if I needed her to stay another night that wouldn't be a problem, but I was wondering if the hospital's air filtration would help my condition, so I had to at least try it.  I finished some laundry before we headed out, so we didn't get to Egleston until 6:00 pm.  Mom, with the assistance of nurses, had to clean up a big mess in the room.  Chase was on the sofa-bed and apparently one of his IV lines came loose, leaking whatever fluid he was receiving, along with some blood, all over him, the bed, and the floor.  His clothes were soaked, as were the linens and mattress pad.

William was so sweet to Chase.  He commented several times how much better he looked and asked how he felt.

I could tell William was still hoping Chase would be able to do more.  I'm sure they both wish for that.  Even though the visits are fairly brief, I think it has been really good for them both so see each other, especially for William to see Chase is improving each time he comes.

Chase's mouth on Monday, March 7, 2011

And his lips!!! I was amazed at how much they have healed!! The picture on the left was taken the day I left the hospital - after he chewed off all of the dried, dead skin that morning.  The image on the right was taken Wednesday evening.  It was so good to see him awake and looking more alert, too.  What a difference a couple of days makes.

Chase's mouth Wednesday, March 9, 2011

Since I wasn't 100% sure I would be able to stay, my mom was sweet enough to start some laundry going here while the boys chatted and I waited to see how I felt.
I literally thought if I laid down on the sofa-bed, I would fall asleep for the night.  


My head was pounding, my sinuses hurt, and my throat was sore.  I was really hoping the filtered air in here would help clear my head, and thankfully after a couple of hours I was already feeling better!  Granted, I've been taking whatever meds I can to combat this sinus gunk, but the air in here makes me want to hibernate for the Spring. 

In spite of his alertness, fatigue was written all over his face though, poor guy.  In an earlier text, Mom said there was a battle with him to do his laps.  Two nurses took him around for a few laps in the morning and then physical therapy came by to do more.  She had to guard the door to keep him from coming back in too soon.  She keeps a pretty tight schedule with him when she's here.  I'm far more loose about things, and I could tell he saw sucker written on my face because at the first mention of bath, he was balking.

"Nonna already worked me hard today. I shouldn't have to get a bath. I'm really tired."

Tough love won out in the end, even though it was late, and he got a bath.  Oh, but does he put on the guilt trip.  I still insist though that he do his chores even if I may not insist he does them to the extent they should be.  But Chase wouldn't be Chase if he did not try to negotiate and/or talk his way out of walking and bathing.

Lucky for him, he seemed to crash right away. However, anytime I come back here, the first night is always that transition night.  I could not wind down, and found myself reading.  Before I knew it, the time was well past 3:00 am. Yikes!


So, I will go to bed now!!


Thursday, March 10 : Day +21


In spite of having a difficult time winding down last night for sleep, I felt pretty good today.  The air in here is definitely making a difference.  Now only if I would learn to get to bed at a better time.

Chase and I were woken around 9:30 this morning by a visit from Jeannie and Monica - his BMT buddy.  Monica received great news that she won't have to go back to clinic for 3 months.  She looked great and tried to engage Chase in a conversation, but when it's that early, you can't get a whole lot out of him.

He looked good though and his lip had even reduced further!! I have been amazed at the change in him physically.  Granted, he still looks wiped out, has that bronchitis sounding cough, and dark circles under his eyes, but he's so much more alert.

I thought for sure he would want to go back to bed, but by the time Jeannie and Monica left, we were already starting our stream of doctors coming into the room.  The "parade" has all but disbanded since his lips are growing closer and closer back to normal.  However, last night I noticed he had these bumps on his skin that started on his head and then to his neck that looks like little dew drops.  Elise, the PA, came in and took a picture of it to send to a Dermatologist friend of hers.  I just know if someone wants to biopsy one, he will have a cow - as would I.

They aren't alarmed by it, and said his high fevers could have brought this on.  In fact, they were joking around with Chase saying that he isn't him unless he's coming up with something new for them to take a look at.  I think the day before it was a swollen elbow.

Once Chase got out of bed, he decided he wanted to sit on the sofa with me.  He watched TV, which I was glad to see him doing.  A dear childhood friend of mine from Washington, Trisha, called me while she was on her way to work. It was great catching up with her, and also very nice to speak to someone on the "outside".  All in all, having visitors, a great phone conversation with a friend, and Chase sitting next to me started the morning off in a great way!

Carissa, one of the physical therapists, came by to take Chase on his laps.  He resisted it of course, but I gave him my firm "This is not an option" speech, and he reluctantly got up and walked with her using his walker.  He takes a rest half way around the loop to catch his breath, but he did 5 laps.   He seems to be walking better and not becoming quite as winded as he was before, which is very encouraging.

When the doctors came to see him, they were all of the same mind that Chase looks great.  That made me feel good, and I hope Chase was bolstered by that as well.  He is definitely a different kid from last week!!  I asked about what they need him to do to get us discharged and it was:

1. 3 days with out a fever
2. No infection
3. Have to show that you are eating and drinking for 3 days - even minimally 

I admit to getting pretty psyched about that because he has numbers 1 and 2 behind him.  He's drinking, but has yet to make an attempt to eat.  Hopefully, that will come within the next few days though.  He asked for milk this morning, which he drank half a carton of.  Then he began coughing up mucositis and the next thing I knew the milk was right back up, too!  He hasn't vomited in a few days, so this, I'm sure was disappointing for him.   On the bright side, it had yet to curdle in his stomach so we were spared that  lovely scent!  Rebecca brought him back Kytril for nausea and he has felt fine since then.

By this time it was well after 1:00 and Chase started drifting off while watching TV.  Rebecca came in and took his temperature, and I think muttered, "Here we go."  He told her he felt like a fever was starting - NO, no, no, no, no, nooooooooooo!!!!

Here we go again on the stupid see-saw!!!  Let me off!!  I found this image today and boy does it fit perfectly for our situation.  Not to be negative, but I need to keep reminding myself to expect frustration before liberation!

He was wearing a hoodie jacket, so we made him take it off for about 15 minutes just in case the temperature reading was inaccurate.  It wasn't 38.2, which turned into 38.5 within a couple of hours.  She took blood for labs, and they started him back on Vancomycin.  The cultures won't tell us anything for at least 2-3 days.   He took some Tylenol and was at least still drinking ice water.

By shift-change, his temperature was 37.5, which is acceptable.  I was just hoping he wouldn't have a bounce in temperature once the Tylenol wore off, and thankfully he did not.  Once his temp got back to normal, Chase really started interacting more with me and his nurses.  We were watching TV for quite a while, including the Man vs. Wild show, which he said he really liked.  Somehow, we ended up on the topic of some of the gross things this guy has to eat.  Not the best topic in the world to think about, since live crickets were on the menu.

What really surprised me was Chase asking to see a movie last night.  I brought up some DVDs from home, including a couple of old WWII movies, so he chose Battle of the Bulge.  Since he had the fever, I didn't push him for more laps and a bath.  Instead he had to do some bedside exercises just to get some blood flowing.  And that movie? I forgot just how long it is!!  We were up until midnight watching it.  He wanted to see another one after that because he didn't realize it was so late.

Since he was already on the sofa, he elected to stay there, propped up by about 8 pillows!  I took over his bed, of course.  I'll have to wait until tomorrow to see how well I'm able to sleep here.  Until then, we are still taking this one day at a time.

God Bless!

Saturday, March 5: Day 16

Today began with one of the quietest nights we've had around here in a very longtime. For the past two evening shifts, we've had Kari. I don't recall having her take care of Chase too often, but she has always been so sweet and last night she was a blessing!! Before we settled down, she promised to try and catch the beeps before they happened. I know that isn't always possible because they are so busy with other patients, but I don't recall hearing anything last night. I slept very well and since I didn't hear too much out of Chase either, I'm going to assume he slept well also.

And we have some great news...no fever!!! He's down to 36.7, which is normal. As I write this, he has been fever free for 24 hours! I think the steroid, along with an army praying, has beat down that awful fever. He simply has to feel better. I know it will take another day to regain some more of his strength, but I could already see a difference in him when physical therapy came by to walk him earlier. Although he is still short of breath, he did not require as many breaks while walking as he did yesterday. We still have laps to complete today, but this is a blessing for him to be fever free for the first time in over a week!

He has already asked for some sweet tea today. I don't know why, but he will often hold the cup without even drinking or just hold it after a few sips. He did that today and after a while suddenly woke up because his tea had spilled on him. Apparently, he had fallen asleep in the chair. I think these days, Chase could fall asleep standing up. After I cleaned it up, he made a huge effort to drink more than half of what was left.

I thought he was snoozing again, and then he asked, "You know that movie William and Dad watched?" I nodded and grinned because I could already see where this was going. "Yes, it was Megamind. Do you want me to see if I can rent it?". He nodded. "Do you want me to go now?" Again, another nod.

I wanted to see it myself, so I was more than happy to get it for him. Besides, I haven't left this unit since Thursday, so it was nice to get out for a quick errand. I had to pick up some orange juice anyway. I'm sure Chase will try and talk me into letting him drink some, but that isn't happening until his mouth and throat sores have healed up. Right now, apple juice just tastes nasty to him at the moment.

While I was out, today definitely felt more like a late winter day. It was overcast, a little chilly, breezy, and drizzling. I loved it!! I have significant Spring allergies, so any pollen that can be cleaned from the air is a good thing for me. My sinuses completely agree, too.

When I returned, Chase had truly fallen asleep and was in what appeared to be a very uncomfortable position. I couldn't resist taking a couple of pictures.

The pillow his head is on, was not there prior to the pictures. Beforehand, his head was resting completely on his shoulder. I was getting a crick in my neck just looking at him, which on top of everything else, he doesn't need.

Mildred, our nurse for today, is simply wonderful! I've written about her before, and she never fails to amaze me with her "hustle".  She's take so much time with Chase, making sure she isn't causing him any discomfort, and tells him ahead of time everything she's about to do.  Heck, she even changed his dressing while he was sitting up in the chair. Where it is located, you can't really stand to the side of it very well, so she changed it while virtually leaning over him AND had it done in less than five minutes.  I was impressed to say the least.

But one thing I really love about her is that she listens and acts upon concerns and questions.  Earlier today, she mentioned Chase getting another dose of Neupogen.  I thought he would only receive the three doses and that would be that.  She heard the question in my voice and said she would double-check his chart and ask the doctor to be sure.  That wasn't my intent for her to go and do that, but she did verify it for me.  Mildred also said she listens to parents because sometimes they know more about what's going on than the incoming nurse.  And yes, I have experienced that first hand.  I think Mildred has worked here at Egleston for over 20 years, and in my book she's a gem.  She thanked us for letting her take care of Chase today, but we should be thanking her for her wonderful dedication to her patients.

I think I've mentioned before that sometimes Chase will say some funny things due to the drugs he's on.  Within the past week, I know I've noticed it in particular when he gets Benadryl for blood products or before he's to receive Vancomycin.  A few peculiar things have come out of this mouth this week, thankfully all of them appropriate!

He told Rebecca, "Thank you for the presents."
My Mom was here and said, "What presents?"
He then told her, "I wasn't talking to you, I was talking to Rebecca." 

Chase started searching in his chair and asked, "Where are the orange caps?"  I had no idea what he was talking about. "The orange caps," he repeated, "The ones off the soda bottles."
Chase has not drank any orange soda since we've been here. 

"William, will you just cut it out!"  - William was not here.

My parents had just left the room when Chase said, "Hey, William is still in the bathroom.  They better not forget him."
I asked him, "Who is in there?"
"William is IN the bathroom."  Again, William had not been here. 

"Where's my food?"
"What food," I asked. "You don't have any food."
"I don't?"
"No. You haven't eaten for days."
"I thought I made myself something."
"What did you think it was?"
"Cereal."

Dawn, the nurse he talked into squirting water at Rebecca back in January, was assigned to Chase this day and was at his bedside when he said "Hey, was'up?"
I knew he couldn't possibly be talking to her.  He got a slight grin on his face and then raised both hands up about equal level, but his fingers were moving.  
-  My best guess is that he had signed onto Xbox Live and was about to play a game. 

I'm going to go ahead and sign off.  It's just after 7:00 pm, I'm hungry, and we have a movie to watch.  Thank you all so very much for your prayers and support. We are anxiously awaiting his blood counts to show up, white blood cells, then for him to have enough to start showing neutrophils.  In the meantime, I'm praying the steroids continue to help him improve and the Neupogen will facilitate his cell production.

Take care and God Bless!

Oh, almost forgot! Last night I finally felt like getting more stuff up on his door. I re-posted two of the signs he had previously ripped down back in January, and I also added a new on along with a cartoon I've had in my head. The sign with his name on it is one I made back a while back. Chase wanted camo, so that's what I attempted to give him. I think some if it looks like worms, but he was happy with it.

Bio-teen...Biotene (the mouthwash).  Get it?

I found some perfect clipart for the mucous and Marrow
Man's face and feet.  He look less like the stick figure
I had envisioned.

This is a bit of advice to other patients on how to
get out of BMT chores.  I'm poking fun at Chase
with this since he's the master at doing this.

This is one of the ones he tore down before.
Good thing all I have to do is re-print it.

I'll get a better pic of this later or a PDF of it.
It's poking fun at Chase again, but it isn't far from
the truth.  Rebecca is featured in this one.

Friday, March 4th: Day +15

Quick Note (3/12/11)
Please pardon my rambling and probably repetitious writing in my posts.  I've been writing whenever I can during these weeks, sometimes just jotting down notes.  Some posts were nearly complete but with gaps between the days, I held them from publishing.

After re-reading some of them, especially from this week, I can see my mind was all over the place.  I decided not to edit them though, just to complete what was missing for two reasons.  One is time.  I want to get these posted.  The second is to make sure I don't alter what I was feeling at the moment that prompted me to write both what I did and how I wrote it.

Thank you for your understanding.

Friday, March 4th: Day +15

Chase and I were both woken this morning at 7:30 by an all too perky doctor, one of the parade of many, coming through his door. I think she was from Infectious Diseases. All I recall was her turning on the blasted brightest light in the room, which woke both Chase and I from sleep. Thankfully, her visit was brief and I thought we'd be able to go back to sleep.

No such luck.

Once that revolving door opens, the rest keep coming through. Within 5 minutes of her departure, one of the dermatology doctors came by. His upper lip is swollen worse than before, which is disappointing considering it had been going back down closer to normal. His bottom lip looks larger as well and definitely more red.




I can't tell you how heart breaking this is to see him fall another two steps back, especially after the news yesterday that his counts are probably coming in.

Adding to this is the change in his respiratory rate. He's breathing a lot quicker now, which is most likely due to the fever. Speaking of fever, it has been holding at 104.2 for about three days now. He gets the occasional reprieve with Tylenol but then it skyrockets again.

The dermatology docs yesterday prescribed some kind of steroid cream to go around his lips, hoping that would reduce the swelling. Along with returning to the saline wash and adding neosporin to his lower lip, these were the only changes from yesterday. Because his upper lips is swollen more and his breathing is not normal, they are canceling the use of both the steroid and neosporin.


Then we had an ENT doc come in. She's the head of all the others who saw Chase on Wednesday. The CAT scan didn't show anything in his sinuses, which I suppose is a relief. She gave Chase a thorough exam, even to the point of having him follow her fingers with his eyes. He had a little trouble looking to the far right. He said it was a little uncomfortable. When she asked him the names of his dogs, he looked straight at me and pointed. I don't know if he couldn't tell us or if his throat hurt too much to talk. He knew who I was though.

While ENT looked at him, the fourth doctor came by. She had on an AFLAC jacket, so I think she is one of the residents maybe. My head is spinning so much right now that I've forgotten which doc belongs to which department. Anyway, after she examined him, she let me know there is a chance he may have to go to ICU. They wanted to see how his lungs were doing first because they did not sound as they did yesterday. Rebecca said this isn't appearing like pneumonia. His lungs aren't filling, but it sounds more like they aren't able to fill as they should - diminished capacity.

I think they are going to start him on oxygen and before I could even write this much, they already and a portable Xray machine brought to his room to get a picture of his chest. I think everyone was surprised they got here so quickly.  Actually, the oxygen idea was dropped.  They fear it will dry out his nasal passages and throat even more, exacerbating the issues he's already facing.

Although ICU is being mentioned, they would send him so he could be highly monitored all of the time. it isn't like his nurses aren't doing that, but in ICU they have a lower nurse to patient ratio. I've already put in a request for Noah should be have to go.

Given his increased respiratory rate and high fever, I thought this could be the beginning of septic shock again, but his blood pressure looks good so far and his oxygen saturation is still in the high 90's. I'm glad it isn't what we're facing right now, but you still do not want to hear your child may go to ICU. I knew before we started transplant, expected it even, that he would make a trip over there, but it doesn't make it any easier.

The doctor who mentioned ICU to me said some of the symptoms he's going through could be signs of engraftment, which is when his donor's marrow is taking over and starting to produce. She said engraftment can sometimes make you sicker right before your counts start to come in. Then again, this all could be Chase fighting an unidentified infection. With all of the antibiotics and an anti-viral that he is on, it just doesn't make sense for it to be an infection. I'm hoping it's his new marrow to blame.

He took his Tylenol not too long ago, so that should give him some relief soon. It has never gotten him down below 38 this week, which is still over 100 degrees.  I'm just so anxious for his fever to be under control.  I know he will feel so much better once that happens.

Rebecca just came in and said they are going to give him a steroid throughout his IV.  I asked her what the purpose of it was.  She explained it helps combat the engraftment "syndrome", can help against GVHD (graft verses host disease), help the lungs, and in bringing down the fever. She also said it can lower his immune system, which leaves him even more vulnerable to infection. She described it as a very delicate balance between possibly opening him up to infection versus the benefits the steroid can provide. From what she said, timing when to give it is important to reap the improvements while also protecting the patients. In her opinion, she felt like it was the right thing to do.

An infectious disease doctor also just stopped by. His cultures for a virus were negative. She said she doesn't have any bright ideas, but will meet with the BMT docs to see if they can get to the bottom of the fevers. All of these docs and no one has any idea why his fevers are persistent. Lovely. I don't know how long it will take that steroid to start working - another question I need to ask, but I'm praying we will see improvement very soon.

Honestly, I'm starting to have that tight-chest, lump in my throat, "I need to cry" feeling come over me. Stupid tears are rolling down my face right now. I know sometimes it's good to get it out, but while we are in this environment, I don't want him to see me upset, and then get upset himself. It isn't just today making me feel this way. This has been slowly building, and I think in some part it's out of frustration for not having that red herring to point at and accuse of causing him to be so blasted sick. If they could come through that door and say, "Aha! We know what's doing it!", then I would at least have something more tangible to vent my anger on.

BMT docs came in. X-ray showed what they heard, diminished lung capacity and also showed collapsed air sacs. His upper lungs are not showing signs of pneumonia but they are what Dr.Haight called "juicy". Think a saturated sponge When the cells come in, they excrete fluids. The more we can get Chase active, the more those fluids can be expunged from his lungs.

As for the steroids, they normally don't use the it unless the patient is in more critical condition, needing respiratory therapy and other medical interventions. But with his mouth as and throat as they are and with his transplant being high risk, they chose to be more aggressive and start the steroid now.  Hopefully it will prevent him from needing assistance in breathing which would put him in even more discomfort. In ICU there would be a chance of intubation.  If we can get his lungs working by dancing, singing, walking, screaming - each of those works a different parting the lungs and helps work the fluids out.

Well, he didn't sing or dance, but he did walk with assistance from Carissa and his walker. She's behind him pushing his pole.  At first, he was breathing almost to the point of hyperventilating and he told me he couldn't do this.  We stopped momentarily and he put his arms all the way around my neck, both for physical and emotional support.  I just held him for a full minute and then we noticed how his breathing was far less labored.  I was so proud of him for pushing through.  He's such a trooper, but was discouraged about his performance today seeing that he managed to do 15 laps just a few days ago.  He did 5 laps today, but had to stop half-way through each lap for about a one minute rest period to catch his breath.  The point being, he did 5 laps!  Any kind of exercise is better than nothing.

The rest of the day has gone well.  Chase's dad visited briefly this afternoon and brought some groceries, things Chase enjoys to eat.  Although exhausted, he was able to stay awake to talk to his dad.  His fever has also finally dropped below 37 or 98 degrees for the first time in a week I think.  Praise God! The nurses noted how much better he was feeling and looking.  He then asked me what movies I could get.  I walked down to the other Aflac family room and found Easy A and one of the DVDs of Fear Factor.  After two episodes of the latter and watching the former, it was bath time.  I didn't even have to wrestle with him or try and to bargain.  He didn't feel strong enough for more exercise, but getting into the tub was a huge improvement over the past two days.

It's almost 12:30 in the morning, and Chase is still fever free!!  I don't know if the steroids are the cause, but I am just so relieved it's down.  Even if he experiences another fever, the longer he stays fever free, the stronger he can make himself in the meantime.

I feel much better now than I did this morning.  It's amazing what a difference a few hours can make.  Actually, it's amazing what a difference praying makes! Earlier today, I was feeling really down and picked up a book of daily devotionals and started reading through some of the pages I left a sticky note on.  Although the book's purpose is to provide daily support through scripture for a woman going through a divorce, I have found much in this book and another that have helped carry me through this time.  I have felt much calmer and at peace during this transplant as opposed to the last.  It doesn't mean I don't have my days - like this morning, but I find them easier to overcome.

Thank you again for all of the prayers and support.



- God Bless :)

Day 14: Please excuse this selfish, self-indulgent interlude

March 3, 2011 : Day 14
Today we are two weeks post transplant.

Lately, I've had quite a few people say to me, in one form or another, "Where do you get your strength?" "I don't know how you do it."

To which I sometimes reply, "I wish I knew."  There is no simple answer.

Somewhere, somehow there is this source you pull from so you can do what you need to do when your child's life is being threatened.  God, who was my co-pilot, has been handed the wheel, and I do my best to keep my hands off of it, which lifts a huge burden off of my shoulders.  If that isn't a great source of strength, I don't know what is!! I also have a literal army of people praying for Chase, William, and me.  I have incredible parents, without whom I'd be lost.  I have been blessed with so many giving so much support it's humbling.

However, I most certainly can get tapped out from time to time.  To say the past ten days has been difficult, is a mammoth understatement.  But "difficult" will have to suffice.  Right now what little portion of my brain that is still capable of lucid thought simply cannot conjure up a more descriptive word or words.  Yes, I could simply open a new tab and search for synonyms, but honestly, I don't have the energy.

Truthfully? I don't want to.

I've pledged not to fall of the face of the social networking planet again.  I've pledged to keep everyone updated, and I don't want to go back on either one.  But I'm coming close to doing that right now.  I'm feeling myself turning inward.  Self-preservation.  I've been typing a little bit each day, but for some reason I don't finish a post adequately enough for publishing.  I'm letting myself get distracted by other things.  Scratch that.  I want to be distracted. I want to think about other things.  I want to put this to rest. THIS sucked the life out of me once before - practically.  I don't want THIS to take me THERE again.

All I want to do is get into my bed - MY bed, in MY home and sleep.  Perhaps for days.  Chase has been sleeping 20 to 23 hours a day.  I find myself watching him, wishing I could do the same.

Quiet solitude.  

I am so looking forward to the day - in the future, of course - when I can have the luxury of taking a day of solitude for myself.  No errands to do.  No appointments.  No obligations.  No worries about what is being sacrificed in the name of "self".

As I write this, it sounds selfish.  I'm sorry.

Actually, probably not as sorry 

as I should feel.  

We've been at this for almost two years, without much of a break between relapses.  Even then, there was no real recovery time.  Nothing restorative to recharge the batteries.

"Normal" life duties and other issues were calling and couldn't be ignored.

I just got this picture in my head of a ping-pong ball called "RECOVERY"being batted back & forth between two paddles; "LEUKEMIA" and "DIVORCE".

I just really want to scream: "PUT THE PADDLES DOWN!"

Well, at least the game isn't as nerve-wracking of a nail biter it once was.  The "divorce" paddle or rather "post-divorce" sees little to no action.  If I even suspect movement on its part, I keep reminding myself, it's no longer a player.

And leukemia? Right now it bounces the ball on the paddle.  It used to do so mockingly, but not quite so much these days.  The height and energy behind the bounces varies from day to day, but overall I can feel it's growing weaker.  In fact, if I look carefully enough...the paddle is wavering.

Here me now you vicious disease!  

THIS IS YOUR WARNING:

You will have NO other opponents to face once it's your turn to bat the ball back. I plan on doing my level best to build a HUGE...GINORMOUS cushion on the other side of that net on which the ball will comfortably rest.  And when the ball is is out of your court.  Your paddle is being incinerated.  For good!

So, please forgive my rambling.  Sometimes it just helps to get it out! 

Thank you as always and God Bless!

Thursday, March 3, 2011: Day 14

I'd like to start off this post by saying we've had great improvement.  Emphasis on "like to say".  Chase is in his second or third (I've lost count) of high fevers reaching 104 degrees!!  Yes, this is mounting frustration you are hearing...reading.  We haven't seen signs of his blood counts coming in just yet, but his lips along with the bleeding in his mouth do seem to be improving.

Engraftment, when the new marrow starts to grow, usually starts around Day +10 or a bit later.  Once that begins, his counts should really start showing a steady rise, especially since he is given Neupogen daily to encourage the marrow to grow.  He is still receiving platelets quite often.  Half the time it's done in the middle of the night and I'm not even aware of it.

I had a very difficult time getting to sleep last night.  It always seems to be the case when I come back to the hospital, but last night was particularly difficult.  For one, I'm still struggling with my sinuses.  Any time I leave the filtered hospital air, within hours I'm feeling the pain and pressure.  Also, I think with his fever being so high, I am even more on guard than usual in case he may need me.  I don't believe I got to sleep until after 3:00 am.  I tried before then to sleep but tossed and turned and Chase also called for me around 3:00 to tell me he was ready for his bath.  He told me to go ahead and get it ready. He had no idea what time it was.

Unfortunately, about two hours later (5:00 am) I woke up when I heard what sounded like water running.  We have a sink both in the bathroom and in the hospital room, too, so I thought it was that.  Only I opened my eyes and realized it was Chase standing up and I knew right away he was the source of the sound.  With all of the drugs he is on combined with this high fever, I don't believe he knows which way is up.  He is hallucinating quite a bit, forgetting things, and attributing sounds to those he might hear as if he was at home.  All of this led to his thinking he was in the bathroom when he wasn't.

It turned out to be worse than I thought.  I turned on the bathroom light and urged him to come to me, and that's when I realized that he had an absolutely horrible case of diarrhea.  Honestly, it scared me more than anything else.  One of the symptoms of Graft Versus Host Disease (GVHD) is diarrhea.  I do expect him to experience some symptoms of it since up to 80% of unrelated matched transplants have it, but I felt it was too early.  Between my fatigue and his health issues, I about lost it right there.

But this is one of those times, when I had to box those feelings away because I had more pressing matters to deal with.  Once I got him in the bathroom and started the bath water running, I ran out to the nurses's station, which luckily is about 3 strides outside his door, and told them we had a huge mess.  It took me and three nurses about 45 minutes to an hour to get everything cleaned up, including Chase.

And when I say cleaned up, everything that could have possibly been contaminated had to be cleaned by hand with very strong anti-bacterial wipes.  These are so strong, I never use them without putting on gloves first.   His IV pole, the IV tubing (and there is a lot of it), the wheels of the pole, the electrical cords for his pumps, his entire bed including the plastic covering the cushion were sanitized. Plus, they had to call in someone to clean the floor in the room and in the bathroom.

When your day starts out like this, you simply want to crawl up into a ball, cover yourself up with a blanket and cry or go to sleep...or both.  I did shed a few tears after it was over with, but I didn't give into them.  I won't do that in front of Chase and if I do, I know it will be like a flood gate.  So, I'll take a raincheck for now and save it for later.

And I did get a little sleep.  About as much as the space between these letters.  The typical parade of doctors made their rounds, so sleeping in a bit later or getting any type of reprieve was not to be had.

But there was one glimmer of positive news today.  When Elise and Dr. Haight were in here to see Chase, he had a rash appear and then sporadically disappear on his head, neck, arms, stomach, and legs. I've seen this before when he gets blood and on the day he received the new marrow - both times.  All of the doctors seemed excited to see the rash.  They kept pointing to where it was showing up and then disappearing less than 30 seconds later.  Dr.Haight said in a sing-song voice, "This could be his counts coming in."

And there was my glimmer.  I do like to hear about counts coming in, which means engraftment, which means white blood cells and neutrophils and best of all HEALING!

Honestly, I don't recall much else that happened this day, and probably for good reason.  This past week and a half have been miserable, and I am still left to wonder when the end will be in sight.  When will we he get a break from this blasted fever??

Something has to give, and I pray the fever gives out before I do.

Taking a deep calming breath and taking things one day at a time.

God Bless!