30 December, 2010

12/30 PM

Had an interesting night/morning.  Roberts belly swelled up like a bowling ball.  Was scary as heck to see!  After talking with the docs we decided to let it be and keep an eye on it.  It didn't hurt him much as long as we curbed our urges towards investigatory poking.  It has gone down by half now, so all seems well.  He slept a lot today, but has been comfortable.  He even took time out of his busy schedule of building Lego's, eating, and Mario Kart to give his sister a bottle. 

29 December, 2010

12/29 PM

Robert has evolved into a steroid fueled, moody, eating machine. Stopped only by episodes of spontaneous napping.  He is comfortable and is not having much pain, aside from the one he claims to have in his posterior from having to deal with his brother. Somehow Grandma Ginny  found her car keys and escaped today, I suspect foul play. 



28 December, 2010

12/28 Tues PM

Things went well today.  Robert did not experience the day after chemo sickness that he did on his last push of Vincristine.  The last time severe bone and jaw pain set in 2 days after, so we are wondering if it will happen again tomorrow.  He was kind of tired, and just wanted to lay around, so that's what he did.  I'm spending tomorrow applying for grants from misc. cancer organizations, and my employer to help defray some of the costs.  I found an email in my spambox about having a rich relative who is Zimbabwe royalty and has died, leaving me a fortune.  All I have to do is send them my social security number & bank account info and they'll wire me my millions asap, leaving us set for life.  So we got that going for us.

27 December, 2010

12/27 Monday PM

We are back home from chemotherapy happy to have not had to spend the night. As we expected, Robert had to get a platelet transfusion.  When we first got to the clinic they pricked his finger to get a small blood sample.  The tiny hole made from the lance (same as folks use for diabetes) bled terribly and wouldn't stop.  So, a platelet transfusion preempted the other procedures. It seems that he will basically be constantly in a stage of Thrombocytopenia (low plat. count) for quite a while, but they will only transfuse when the platelet counts hit rock bottom.  They accessed his internal central line port without incident, and without pain thanks to a numbing cream that they gave us to apply at home prior to leaving out.  His spinal tap went without incident, as did the chemo push.  For the first time today, Robert looked like a sick little boy.  With his shirt of you can see the bruising all over his arms, battle worn from his 9 days in the hospital being poked and prodded.  He is looking thin, and is tired a lot. We're waiting to see if he will be sick tomorrow, like after his last treatment.  Robert seems to have grown up a bit over the last 2 weeks.  He is still my sweet little buddy, but in the way he talks, there's more substance now.  I think he may have had a bit of innocence stolen from him, and replaced with his first harsh life experience.  I don't know, I'm having a hard time explaining it.  But all in all he's happy and comfortable, and we are grateful for that.  I must say that the doctors and nurses genuinely care, and it shows in the way he is treated

12/27 AM



This morning we are headed back to the hospital for chemo.  And today his treatment returns to the Vincristine, the uglier of his chemotherapy drugs in this phase.  I wonder if he will experience the same levels of sickness and discomfort as he did after his previous dose.  We have a 50/50 shot of spending the night in the hospital.  I know Roberts platelets are low, so I expect a transfusion,  and he is also set for another spinal tap today.  I will update again when this is all over.

26 December, 2010

12/26 Late AM

"Its Twitsmas"..At least that is what Ben told me in his morning point blank whispers, one of my favorite ways to wake up.  I barely rolled over because I have recently conditioned myself into keeping my over-sized frame precariously perched on an under-sized vinyl hospital couch.  I was pleasantly surprised to realize that I was at home, with my youngest son's eyes beaming, the result of just walking past a Christmas Tree loaded for bearTo be honest this sort of Rockwell-esque sensory euphoria was harshly interrupted with panic, as I remembered everything.  I seem to have developed this terrible morbid theater in my head, that without much provocation depicts scenes that should never be seen.  I barely got out the words "where's Ro..."  when I realized that Kasie was already slinging her robe around her shoulder and halfway down the hall to find out.  He was fine, peacefully asleep.  I'm just as sure that this sort of overreaction will subside, as I am that it won't be anytime soon.

With this relief and the joy of being home, our 2010 Christmas began.  Along with  the fruits of Kasie's shopping trip last week, was a cache of gifts sent by concerned friends...Thank you.   The flurry of wrapping paper and the sound of Ben's sweetly misspoken treasures proved to be quite a treat for us.  Grandma Ginny is with us, a held over hostage from her help this past week.  Robert seemed fairly tired, and got sick once, but came around and is having a fun day.  He and Ben have apparently agreed to a cease fire in their ongoing turf war.   It is a great day here.  Kasie has a ham in the oven, the boys are having fun, there is 2" of snow in N. Ga, and blood pressures are good.  Could I dare ask for more?


Fun, rest, and comfort are the plans for today...Chemo tomorrow.  The Hart's are having a good day, comforted by familiarity.  I will post some photos this evening.  Got to go, it sounds like cease fire negotiations have deteriorated.

25 December, 2010

12/25 PM

We are headed home.

12/25 Late AM

Docs just came in and said they will run more labs at 3 to determine if we can go home.  There is a good chance that we will be able to.  We have to be back in here on Monday for chemo, and I predict a platelet transfusion, that will likely turn into an overnight.  I told the doctors that if we stay again tonight, we might as well stay until Monday.

12/25 Sat AM

MERRY CHRISTMAS!

We are still at the hospital, hopefully headed home soon.  We awoke to find a big stocking in the corner of the room, and the rumor is that Ol' Saint' Nick himself may be stopping by. 

I hope everyone has a blessed, enjoyable Christmas.  We appreciate all of you.  I will update this evening.  Hopefully from home.

24 December, 2010

Thursday 12/24 Mid Day

Unfortunately we will be spending Christmas morning here in the hospital.  We may be able to go home later in the day.  If so, we will just celebrate Christmas Sunday morning.

Robert is resting comfortably. He is exhausted this afternoon and I can't get him out of bed to have any fun.  So we are just relaxing and chatting in between naps.  Mamma is taking a break and visiting with Ben and Allie.  I really miss them,  and would love to see our family back together soon. 

Friday AM

Today's release is teetering on the results of some mid day blood work.  When the chemo breaks down cancer cells, toxins such as uric acid are released.  Most of these toxins are removed from the body through the urine.  However sometimes the levels can rise, causing the need for further medication.  Such is our position, as we await to see if the first round of this additional medication has reduced these toxins to an acceptable level.  If all is well, we may still have a late afternoon or early evening escape.

Robert is feeling fair this morning.  He is having a hard time with some jaw pain.  This is an expected side effect of the Vincristine, his primary chemo med.  He is sleepy and sore, but with some Tylenol/Codeine on board, he should soon be resting.

23 December, 2010

For The Record

Cancer is SERIOUS business.

Thursday PM..I think....Lets say Thursday-ish

Robert finished today's chemo treatment by lunch, and it went perfectly.  For this round, the star of his toxic cocktail was Pegaparese.  This is the first and last time that he will receive this particular drug during this phase.  So far it has not been as rough on him as his primary treatment med of Vincristine, but we'll reserve celebration until we see what tomorrow brings.  He seems to get sicker the day after treatment.  His blood pressure was great throughout the night, and this morning.  The long term bp medicine seems to have taken effect.  If this trend continues we may be able to take him home tomorrow, and reunite our family for Christmas.  Below is a photo of Robert with Ms. Roz.  She is one of the Child Life Specialists here at Egleston.  Here she is explaining all about chemotherapy, and its effects using a character called Captain Chemo. 


There will be some restrictions regarding visitors for the the first few weeks.  Robert will soon have little to no immune system, and we will have to take some extra precautions.  We'll get some details posted here when we figure them out. Be sure to check with Kasie before visiting.  We would hate to turn anyone around at the door, but we may have to at first. 

On the subject of help, we've had some very kind offers.  To be honest, we don't know what we need right now.  One long term thing that I know we could use, for those of you who live close, is a contact list of people who may be able to watch Ben and/or Allie on short notice. Life will start with Monday trips to Atlanta for Chemotherapy, with a mixed bag of tests and procedures mixed in. Most should be day trips only, but any of them could turn into an overnight.  Also any fever, virus, bad blood count, or case of the skittles will result in a hospital trip for Robert. 

We are very excited at the prospect of going home.  However Robert and I have become institutionalized, and were not sure we can make it on the outside. 

We are thankful for all of you who care. 

Thursday AM

We're having a good morning here in Robert's room.  We slept like 3 logs in here last night.  His blood pressure remained stable all night, and was only a little high this morning.  A vast improvement thanks to some good meds. 

He is in great spirits this morning, and seems like the Robert we all know.  However round 2 of Chemo starts within the hour.  I hope that this round goes a little better than the last.  We don't need it to be easy, but we need it to be a bit easier than the first one. Time will tell.  Well I'm off, we're painting a Triceratops this morning, and they wait for no man.   More tonight, post Chemo.

22 December, 2010

Wednesday PM

Last night was rough, and another rough patch this morning.  However he has been comfortable since noon, and is now resting peacefully. He hadn't eaten since yesterday morning, so Kasie and I were relieved when he made it most way through a happy meal tonight.  I pray that he has a restful night.

Wednesday Early AM

My friends, we saw a glimpse of the monster last night.  He's a vile, disgusting creature, evil to the core.  He spent the evening watching Robert, circling, studying, waiting, sizing him as easy pray.  When he finally bared his teeth and narrowed his evil eyes on my son, he was met with a surprise.  As he began to clamp his stinking, watering, mouth on his prize, he was surprised to find the hands of a 6 yr. old around his throat.  So will be the fate of this beast.  He'll come back, but Robert will be waiting.

Blood pressure is the problem right now.  It escalates to the point that it causes Robert to writhe in pain from severe headaches.  He suffers with these for a couple hours until he gets sick.  This provides some sort of relief, as he then falls asleep for an hour or so, until the pain of a new headache wakes him.  This has been the cycle last evening and throughout the night/ early am.  About an hour ago they gave him a medicine that is supposed to quickly drop the blood pressure.  He seems to be resting now.  They attribute the high BP to the steroids that accompany the chemotherapy.  They will probably add a longer term bp medicine to his daily meds. 

21 December, 2010

Tuesday PM

The day was off to a great start but culminated with a rough afternoon and evening.  Day Chemo +1 resulted in a sick little boy.  He handled getting sick fine, but had a few major headaches today that seamed to just torture him.

Robert and I talked a lot today.  I really enjoy having conversations with him, frequently surprised by what he knows. We hit all of the important topics...oh you know...the standard stuff...Camping, Canoeing, Robot Wars, Transformers etc.  However, my son asked me a question tonight that broke my heart.  The hardest question that I could imagine ever hearing formed by his sweet voice. I managed to answer and comfort him, but it challenged me to my core.  I'm supposed to hold him up with my strength, but I am embarrassed to say that it is the other way around.  He truly is Robert The Great.

Tuesday Mid Day-2

Mission update:

Due to severity of terrain, the mission is scrubbed.  We will return to base to regroup, and reorganize. 

Tuesday Mid Day

Status Report from the Field;

Its day 5 here at the outpost.  Sgt. Robert is resting well from yesterday's engagement with the hostiles.  Luckily Headquarters has stocked us well with provisions of waffles, morphine, and chocolate milk. We enjoyed a restful night in the rack.  The new gear in his chest allowed the medics to do their bidding with no pokes.

We have dispatched Mommy on a day mission outside the perimeter, to the Flowery Branch encampment.  She will be visiting with the new recruits (Ben & Allie), and running recon at a few stores on orders from Colonel S. Claus.  We are gearing up to ruck out on patrol to the game room.  There are reports of a new video game which must be immediately investigated....wish us luck.

***Robert and I cooked up these details this morning, right after the planning of our next camping trip.  He did fine with his first Chemo treatment last night.  He got sick once, but has been comfortable since.  Report on the spinal tap was that the fluid was clear.  Which is another small victory.  A small amount of Chemo was shot into the spine as a preventative measure.  We are all grateful to all of you for the love, prayers, help , and encouragement. 

Bob and Robert....OUT

20 December, 2010

Monday PM

Hello All,
Just a quick update.  Robert is awake from his procedures and back to the room.  All went well and he is resting.  His is in a little pain from the placement of the Central Line, but will soon get some medicine to help.  His liver is enlarged as a result of the cancerous cells, they are keeping an eye on it but expect it to straighten itself out.  Chemotherapy starts tonight, I'm not sure when, but he gets to do it right here in his room.

Thanks again to all.  Kasie and I are grateful for so many, who are offering support in so many ways.

Monday AM

Everything is started for Robert's big day.  He is getting an extra transfusion of Platelets now, and he will soon go into the OR.  The picture below is of one of the wonderful nurses using "Chester" to explain his central line.  He was able to see, touch, and feel it.  The hospital is amazing in how they communicate, educate and prepare him for things.  As I write this, a Child Life specialist is showing him pictures of the OR, and letting him handle any equipment that he will encounter.  They have him engaged, asking questions, and they know how to answer them and make him understand. 

19 December, 2010

Sunday PM

We had a pretty relaxing day today, enjoying some visitors and having a bit of fun.  For a short while we were even able to forget about worrying over tomorrow's procedures.   A volunteer came in and played a few games with Robert, while Kasie and I got to spend twenty minutes on frivolous luxuries such as showering and brushing our teeth.  He was reluctant to put down his video game long enough to play some sort of board game, but decided his new opponent to be worthy of a title shot at his connect 4 world championship title (he cheats).  Kasie, Robert and I even got out of the room for a bit down to the Aflac Pediatric Cancer Unit game room.  Trying to steer ourselves towards the non-electronic entertainment options, we maliciously mocked each other in the purest of art mediums, the potato head.  It wasn't long before we could no longer ignore the shrine to video game bliss located in the corner.  We soon found ourselves engaged in a heated
Wii bowling tournament, of which Kasie won (she cheats too). 

Tomorrow's a big day.  A surgical procedure to install a central line (port-a-cath), a bone marrow test, a spinal tap, and the first round of chemotherapy.  It will be a rough day for our little man, and we may not be easily reached.  I will update again Monday evening.

Sunday AM

Robert awoke feeling pretty good today.  He says that his "bones aren't hurting too bad", and his only complaint is a sore tummy.  He has continued to swell from the IV fluids, to counter the doctors have started him on Lasix to flush him out a bit.  So now he has to pause his fun activities every 15 minutes or so to go potty in a plastic jug.  This would certainly annoy most of us, but of course he has turned it into a game.  He said "I'm gonna fill it up dad"  as he proudly keeps his nurse Ms. Molly updated on his progress.  He easily justifies this new challenge by explaining to me that the jug has "lines on the side to measure and everything."  In between bouts of competitive urination we tried to get him to eat some breakfast, although he doesn't have much of an appetite.  We presented him with a tray of the finest morning selections for the well rounded 6 yr old carbohydrate aficionado, of which he mustered a few bites.

We have had a few family and friends visit, and we are grateful.  Robert was able to see a few of his friends, and even explained to Claire and Julia whats wrong with his blood.  Unfortunately from now on kids under 12 will not be permitted on the floor, but hopefully will be at home by the end of next week.

We are thankful for everyone helping out, and sending well wishes.  We are doing as well as possible here, with tomorrow's procedures and initial chemotherapy treatments continually in the backs of our minds.

18 December, 2010

Saturday

Quick re-cap for those of you just getting up to speed.  Kasie took Robert to the Pediatrician on Thursday, because we were concerned with his color and increasing sleepiness.  After an in office blood test we were immediately sent to Children's Hospital of Atlanta- where the diagnosis was confirmed as Acute Lymphoblastic Leukemia.  This is how he looked when we brought him in-





As you can see from the photo with the page title which was taken Friday afternoon, he looks much better now.


This morning finds him doing well, but with a dose of our new reality added.  Robert woke up a bit swollen from all of the IV fluids, and his body has pin head sized speckles called Petechiae, which is caused by bleeding under the skin.  his body's offending white blood cells are swelling in his bone marrow, causing him pain in his legs.  For the fist time he has a low grade fever, from the ever increasing WBC count.  Yesterday a batch of fresh blood gave us the Robert we are all used too.  But today he seems a little sick and uncomfortable.  He cries occasionally from the pain in his legs, which are currently packed in hot packs,  but some morphine is on the way to help out.  Thankfully its not enough to disrupt his one man gaming marathon on his Nintendo DS that Santa saw fit to drop off a bit early.

First Post

Hello Everyone,
Most of you who know me, know that I despise all of the Facey-space bloggity nonsense that a seemingly increasing number of folks wrap themselves up with. However I find myself in an odd situation.  My boy is sick, and we are blessed to have people who care.  If you are here, reading this, chances are that you are one of them.  As I sit here in the hospital room, the ringer on my phone is off, but I can see our phones constantly ringing with friends and loved ones calling to offer their support, prayers, and to ask for updates.  Kasie and I are truly touched and humbled from the response of our family, friends, and my co-workers.  And honestly every message and email has helped, and is helping to prop us up.  If I didn't return your call on Thursday or Friday, it is because I found myself unable to get through a phone call without losing my composure.  I created this blog (I can't believe I just said that) to help share information and updates with all of you who care about Robert's well being.


We thank you, sincerely.  And for me personally, this whole situation,and the response from all of you, has truly changed me forever.


-Bob