February 28, 2012

No bad news today.  Counts are coming up, cultures are all still negative, no fever, no more blood in his urine, glucose tests all came back as normal and his echo on his heart looked fine.  The worst news is that his hemoglobin and platelets are low, so he had a transfusion for both today.  That could lead to a delay in chemo....

February 27, 2012

The important thing is things are looking up.  Clayton's counts are much better and he is no longer neutropenic.  He is still at risk though until his counts continue to climb higher.  He got out of bed tonight though! Since he is in bed for a week straight, I am really trying to get him moving a little again, so I brought his Cars mat from home and we picked up more toys for him.  Anything to get him a little more playful.  I pretty much always try and bring something to put on the floor so he can get down and play (because goodness knows that me and my germ freak ways are not going to let my baby-man play on that nasty floor), but his mat seemed like the perfect thing to cheer him up right now.

We also discovered that the blood in his diaper was from three things.  First he has a virus in his bladder called a BK virus.  Most of us have this, but never show symptoms because our immune systems aren't compromised.  Since his immune system was compromised, the virus began to irritate his bladder.  Since his platelets were low, the irritated areas of his bladder were not clotting and so we were seeing blood in his diaper.  Then as his platelet count would go up and down with transfusions, he seemed to get blood clots in his bladder that then caused him some discomfort when he would urinate.  Some ripple effect there!

February 26, 2012

We got a smile! And a chuckle!  It is the first time in days we have see our baby smile, much less laugh.  His white counts are on the road to recovery going from 0.2 yesterday (they have been at 0.1or 0.2 all week) to 0.4 today (10 to 15 is normal)!  That brings his ANC to 324.  We're looking for an ANC of 750 to start chemo on Thursday.  Baby steps because his little bone marrow is getting a little bit lazy at this point in treatment. 
The blood cultures are are still negative for infection which is fantastic!  Hoping it stays that way.  We still don't know the cause for the blood in the urine for sure, but the doctors have mentioned the idea of a virus?  They sent some urine to test for a virus a few days ago, but it will be this week before we know anything.  If a virus is the answer, then it would have been caused by the same viruses that get all of us sick everyday.  Essentially, his bladder would have a cold.  Yes, you read that right.  His bladder might have a cold.  Of course there are other theories as well, so if we don't find an answer soon, then when his immune system is better the urologist might sedate him and scope around in his bladder to see what he finds.  We'll see though.
It has been a long, dreary week for all of us and we are hoping it will all be uphill now.  The baby-man was up late last night (when I say late I mean we all went to sleep at 1 a.m. and then I woke up at 3ish to him rubbing on my face...still awake and apparently bored) from there, he preceded to sleep all day.  George and I had to take care of a few things at the house, so after we left at 5:30 this morning and got back about 10:15, we followed Clayton's lead and slept for a few hours too.  Thank you to our mothers for being troopers and coming to the hospital at 5:30 in the morning for us to run home.
We brought back some more things to entertain the baby-man through the week, so here is to hoping for a week with less of this:

and more smiles!

PLEASE READ

People are always asking how they can help and one thing that Clayton needs regularly now and will need plenty of during his stem cell transplant is blood products.  I am going to talk with the Red Cross about setting up a blood drive specifically for donations to Clayton.  That means we need all of you B+ folks out there.  I am hoping that they can do a drive were all blood types are welcome as well for other children to benefit.  It is very unfortunate and not something people think much about, but these kids NEED blood products (blood and platelets) and unfortunately there is often a shortage of them.  I read a story about a little girl who was bleeding from her eyes, nose and ears because her platelets were so low and she had to wait a while on a platelet transfusion because there was a shortage.  Clayton needed platelets when we were in Birmingham and we were also told it would be a while because there was a shortage.  Hopefully, this is something we can arrange soon.  Keep checking back for more information!

February 25, 2012

Here's to hoping we dodged a bullet.  Had Clayton's blood cultures continued to grow negative, we may have had to remove his Hickman, do surgery to replace it and then prolonged chemo.  Never a good idea.  Thankfully, his blood cultures from yesterday and today are reported to be negative for the previously recorded infection in his central line.  Woo hoo!  So, provided his cultures continue to be negative, and he doesn't spike a fever, we should still be able to start chemo on Thursday.  Fingers crossed!

February 24, 2012

Clayton's mucusitis seems to be subsiding and he has started to munch pretty good on Apple Jacks and Fruit Loops.  Every now and again he drinks a little from the sippie cup, but not much.  Today is the most he has been awake in days...Even so, he is notably depressed.  Who wouldn't be?  Even George is a little depressed from being in the hospital ALL week with Clayton.  We alternate who gets to work and while we were both here Monday and Tuesday, it was my turn to work Wednesday, Thursday and Friday, so George was at the hospital losing his mind.
We did find out that the bacteria growing in his cultures from his white line over the past few days is a type of staph infection commonly found on the skin.  Luckily, the infectious disease doctor referred to it as a "puny" infection and says they usually treat it with a combination of antibiotics.  So right now we are looking at being in here until at least Monday.  We'll see.  So far, every day we're here our discharge date gets set back a day.  For now we need to pray that the antibiotics wipe out the infection, because if they don't it will set everything back and mean he might possibly have to have a whole new central line placed.

February 23, 2012

As far as Clayton goes, the past couple of days have been a lot of this...

But while he has been sleeping, everyone else has been working to figure out what has been going on with him.  We know that his counts are low and that he has mucusitis, but we were stumped about the blood in his diaper.  Well everyone started to think that they had a handle on the blood in the diaper situation by attributing it to low platelets, but then ensued the battle of keeping his platelets up.  Clayton has had four platelet transfusions since Sunday! Four!
The next issue we are dealing with is infection.  They have been doing blood cultures on him since Tuesday and have had a bacteria growing in the culture from the white line of his Hickman.  We have started him on antibiotics for whatever possible bacteria that may be, but they have yet to identify it.  So for now, Clayton will probably keep sleeping, George will keep being bored, I will keep pretending to be Dr. House and the doctors will keep looking.

Oh yea, he did start munching on some apple jacks tonight!  Woot! Woot!

P.S. Anyone up for a game of Words With Friends is welcome to look us up! (mostly George because I entertain myself a little better than he does ; )

February 21, 2012

Sorry its been so long!  Guess where we are?...The hospital!  Go figure, huh?
It started at the end of last week.  Clayton started to act differently so we could tell his blood counts were dropping, leading us to his neutropenic phase.  So between work and that, we had our hands full.  The good news was that he wasn't spiking a fever so we were able to spend more time at home.  We had the meds we needed to help keep Clayton comfortable and he is always happier at home than in the hospital.  It was win, win.

Especially for the cat who has taken it upon himself to be Clayton's appointed guardian when he is home.  When Clayton is home, if he cries Otis (the cat) comes running to his side...literally.  He is never far away.

Alas, things happen the way things happen and our home health labs from Sunday morning showed that we need a platelet transfusion and maybe some blood.  Long story short, we came into the hospital for a definite platelet transfusion and got the added bonus of a blood transufsion (hopefully to save us from another visit) only to then find some blood in his diaper.  Oh yes.  For those of you just tuning in, nothing is simple around here.  Nothing.
So our little trip to get a transfusion shortly turned into a day-by-day trip to see what everyone had to say about the blood in his diaper (which appeared two more times).  Sunday turned to Monday and the Nephrologist's opinion, Monday turned to Tuesday and the Urologists opinion and each night seemed to bring the unexpected and midnight visits from residents dropping phrases like "acute renal failure".  Oh yes.  We heard that phrase Sunday and Monday night by two different residents who came into the room totally unprepared for two different situations and proceeded to give me a heart attack.  Don't freak out.  There is no renal failure acute or otherwise, it was simply the negligence of two residents that lead them to that possibility.  Had they taken a minute to read his chart or look at his labs, they would have seen his kidney function was AMAZING!  Anyhow, back to the blood in the diaper...the consensus?

Low Platelets!

Yep.  A 48 hours hospital stay and two specialists brought us full circle back to platelets.  Tricky little boogers!
Then there was today.  Clayton spiked a "questionable" fever (today's nurse and I have a disagreement on this subject).  Here is the thing about fevers when cancer is involved:  if a temperature of 100.4 is reported then a minimum 72 hour hospital stay will definitely follow.  So now it's Tuesday night and we are expecting to be here until Friday afternoon.  However, through the chaos there was a some refreshing news.  We did an ultrasound this morning just to check in on the kidney and snuck a peak at the tumor.  For the first time we got to compare the tumor now to where we started.

It's shrunk!

Woot! Woot!  Keeping in mind that it was just an ultrasound and the MRI, CT and MIBG we'll do before surgery will tell us the most, today was the first time we've had any idea how the main tumor mass might be reacting to the chemo.  Off to bed, more tomorrow!

February 15, 2012

We were thrilled that the doctor Monday was true to his word and had us discharged by 8:30 Monday morning.  That was beyond awesome and meant that after we got home, I could go into work instead of missing a whole day.  (We are trying to work as much as possible knowing that we will be gone so much later on.)
Clayton's reaction to this past round of chemo is still stumping us.  It is unlike any other to date.  Each day is something new.  Tuesday he seemed to be having some urine retention for a longer period of time then normal to the point that I rushed home form work to check on him.  Then today, I once again came home for a long lunch to check on him because his scalp is red.  Not his face , but his scalp and his hairline.  They keep turning red and we have no idea why.  We were thinking it might have something to do with nausea, because in the hospital, his head would turn red when he got nauseas, but he hasn't been very nauseas at home.  Plus on top of the red head, he started itching today?  We still have no definite answers but we are constantly talking with doctors and nurses to make sure we don't need to be worried about anything.
Despite everything, Clayton seems to be in a good mood!  He is happy and playful and walks around the house babbling.
When we're not in the hospital and I'm working and cooking and cleaning and hanging out with the family, I definitely get distracted from the blog, but I'll try not to let too big of a gap pass by in between posts.

February 12, 2012

Today was a good day.  We all got five to six straight hours of sleep last night, then woke up, went back to sleep and didn't wake up again until 10 a.m.  I forgot what it was like to sleep in.  But since I'm sure people don't read the blog to keep up with our sleeping habits I'll move on...   :)
Clayton did not get nauseas once today.  Very different from the first two rounds, but I'm not complaining.  He got out of bed a number of times to play and hang out.

He even showed interest in venturing out of the room, so this evening when the halls were quiet, we put on his pj pants and shoes and walked him (and of course his IV poles) down the hall to the nurses station and the fish tank.  It was a nice little adventure for him and a shock to the nurses since most of them have never seen him out of bed.  I wish I could have taken pictures.  He was so cute.  One of the nurses walked beside him to look at the fish tank and she bent over putting her hands on her knees and his cute little behind got right beside her and did the same thing!  A few minutes later though things went downhill, because he found the elevators and he kept walking us to the elevators and beckoning for us to pick him up.  He knows that's the way out.  And he wanted out!  Unfortunately tonight he has to get a blood transfusion right after his chemo is done, so we are here for the night again.  BUT they have our paperwork ready, so first thing in the morning we are outta here!

February 11, 2012

Turns out I was wrong about the 3rd and 4th days after starting this combination of meds being the worst days for nausea.  For one reason or another last night was rough.  Midnight until about 4:30 a.m. was not pretty.  He finally fell asleep around 5 a.m. and slept peacefully for most of the day.  Since he woke up around 3ish this afternoon, he has been much more active than yesterday and only got nauseas once.  Here's to hoping things keep getting better.
I'm not sure what to make of his reaction to this chemo being different than than previous rounds with the same meds.  His reactions to the first two rounds of chemo-which were the same combination of meds as this round-were identical to each other.  I suppose we'll just have to wait and see what happens next.  But no matter what comes I assure you we are armed with phenagran and morphine if needed!  We'll be sure to make sure the baby-man is as comfortable as possible.
I am filing taxes and working on the site and reviewing paperwork for the foundation, so my posts are brief right now, but there will be lots to add later!

February 10, 2012

Today for the most part has been uneventful.  Clayton was up on and off through the night so he slept the majority of the day.  So far he seems to be having a little more nausea than before, but that could be because of the timing of the when he started.  Not sure.  Nothing else new to report though so I am working on the site and will be back tomorrow with updates!

February 9, 2012 **UPDATED**

The last couple of weeks my posts have been scarce, I think mostly because during that time things felt so normal, that it was just easier to not think about it any more than I had too.  BUT we are back at the hospital for round four of chemo today.  We will probably start tonight and this round will run for a full 72 hours.
It's hard to know what to think or feel right now.  On the one hand I am thrilled that his recent bone marrow tests were clean indicating the chemo is working.  Yet on the other hand I am fearful that his belly is getting larger and that he is having urine retention again.  Is his belly getting larger or is it my imagination?  If it is, maybe it is just because he is gaining weight which is good or maybe it is because the tumor is not shrinking which of course is bad.  Then, I am pretty sure he is having urine retention again, but why?  Is that a sign that the tumor is being tricky or active?  Or is the urine retention related to something else and not connected to the tumor at all?  We never did know for sure if it was.  Or is it just a natural urine retention and I am just extra paranoid?  It is so hard not to be able to see what the tumor is doing in response to the chemo.  I am so anxious for this round to come and go and for the fifth round to come and then THE SCANS.  Oh, how badly I want to know the results of the scans.  The home health nurse Clayton had since he was born actually told me that she knew a mother who called this feeling scan-xiety. 
The way our schedule is, we will do all of the scans again after the fifth round and then again after the surgery and the sixth round.  That is when we are praying to hear the words, "He's in remission."
Anyhow, for now we are doing pre-hydration and waiting to test some of his urine levels to tell us when we can actually start the chemo...Be back later.

**UPDATED**

We were able to get started with chemo around 8 p.m.  That might sound crazy since we got here at 10:30 a.m., but we were happy with 8 p.m..  8 p.m. is good considering that when doing pre-hydration for these same meds on the first round we didn't get to start until midnight and for the second round it was 5:30 the next morning.  Clayton has been as incredibly active all day, which as many of you know is just code for his grandmother and I have been chasing him and pacifying him ALL day...until George got here and it was his turn- seriously, I almost ran from the hospital to get us dinner.  It was that kind of day. When I got back from picking up dinner he was still just as active as ever but in a better mood than before.  Hooked up to his chemo and everything is was just a playing machine last night.  It wasn't easy to coax him into bed, but we finally managed it.

With this round we do one med for six hours the first night and six hours the second night.  When he is getting this med, we have to be sure he is urinating adequately every two hours.  He gets two other meds continuously over the course of 72 hours.  Then of course there will be the battle of combating the nausea.  As far as nausea goes, the third and fourth day are usually the worst.   Anyhow, I'll be here to keep everyone updated!

February 5, 2012

Sorry for not coming back and updating the Monday's post.  I think last Monday just set the tone for an exhausting and dreary week.  Clayton has been feeling good all week, but George and I are exhausted from everything.  We are so grateful to have been able to be home the past couple of weekends.  Time not spent playing with Clayton we have used trying to get caught up on things around the house.  LOTS of stuff to clean out and clean up! 
I'm not much of a writer tonight, so I'll post some pics from the week.

Hanging out at the house with his grandma's while mom and dad are at work.

So excited about his new Cars quilt!

Being the forth judge on American Idol...seriously, he loves it!

Riding around the yard on the 4-wheeler with Dad.

  Playing with on the bed with Dad- which is why every picture mom tried to snap was blurry.  Laughing up a storm!