Tuesday, November 28, 2006

November 28th - December 4th: The Tumor Board

TUESDAY, NOVEMBER 28, 2006 09:53 PM, CST

Parent’s Note:

Keith and Josie arrived at Children’s for an 8:30 am appointment for packed red blood cells and platelets but after drawing labs it was decided only to give him platelets. His HBC had climbed a bit from yesterday so there is a slight possibility that he can get by without a red blood cell transfusion. More likely is that he will be back later in the week for the 'juice'. Josie’s sister, Christine, arrived today from Virginia joining Josie and Keith in the day hospital and will spend the rest of the week with us helping in any way she can. Many thanks to the Rohrer family for letting her come out and to Karen for delivering Christine from the airport.

Later Josie and I met with Dr. Feusner, Keith’s primary oncologist, to review his current status. This was a meeting we were both dreading and looking forward to. We were about to find how well Keith had responded to treatment over the last couple of months. Keith’s latest CT imaging from yesterday was reviewed by a group of specialists including Keith’s radiologist, surgeon and Dr. Feusner. The meeting occurred earlier today in a rather bluntly named gathering called the “tumor board”. As we searched for a room to sit down and talk, I had this awful flashback from early August as Josie and I were led to an empty office in the ER along with several physicians and a social worker to hear words you never, ever want to hear about your child; “cancer”, “it is very serious”, “it has spread”, “it’s going to be a long haul”, “your lives will change”. The words we were about to hear from Dr. Feusner would be either good news, or not; Keith would either be responding to treatment or he wouldn’t. In a way his life and ours seemed to dangle in uncomfortable silence as we walked down the hallway and situated ourselves in an exam room.

Why isn’t he saying anything?

The news turned out to be good. Better than good. Poker face. His tumor had reduced in size 90% from the time of diagnosis. From 1,000cc’s to 100. The doctor told us “To be honest with you, I was not especially looking forward to seeing the results. I was surprised at how the tumor has responded. It is very good indeed.” The surgeon also feels confident that the tumor can now be removed.

A big relief. A few more tests needed for this week including another CT scan of his head and a bone scan using radio isotopes to get the whole picture. And while we still have a long road ahead we have put some distance between where we began and where we need to get.

A recent guestbook entry asked whether Keith was still earning Courage Beads. The answer is yes. Here is his current tally as of a week ago:

2 Bone Marrow Aspirate/Biopsy = Beige
17 Course of Chemotherapy = White
2 Central Line/Port/PICC Line Inserstion & Removal = Orange
11 Clinic Visit = Blue
2 Emergency/Ambulance/Unusual Occurence = Magenta
1 Hair Loss/Thinning = Brown
1 Isolation/Fever/Neutropenia = Lime
2 Morphine/Dopamine/PCA Infusions = Purple
16 Pokes(IV Starts, Blood Draws, IM injections, Port Access) = Silver/Black
38 Tests/Scans(EEG, ECG, ECHO, MRI, CT, Bone Scan, Gallium..) = Light Green
25 Transfusions = Red
7 Tube Insertions(Catheter, Chest, NG, Foley) = Aqua
10 Sleep over at Hospital/Patient Admission = Yellow
1 Stem Cell Harvest/Dialysis/TPN = Dark Green
3 Surgery = Silver
1 Transfer to the PICU = Square Heart
7 Special Accomplishments and Recognition = Special Selection

146 Beads (and counting)


Parent’s Note:

Sorry, no news of any merit tonight.

Keith felt good today even though his hemoglobin is low. We have stopped the overnight fluid IV and discontinued all of the antiemetics so he’s basically running under his own power again and the pink bucket can now be stowed. However, because he is neutropenic with his ANC hovering around zero, he spent the day at home and laid pretty low. Thursday should be a repeat of today’s (in)activities while Friday’s menu will feature a full day of tests with some RBC’s on the side.


Parent’s Note:

As advertised, today was a quiet day at home for Keith – comfortable and happy. It would have been just another day except the lab results indicated that his hemoglobin and platelets were severely low (confirming his somewhat ghostly complexion). So a couple of phone calls later and the day hospital at Children’s was put on notice to be waiting for him bright and early tomorrow (Friday) to receive two units of packed red blood cells and more platelets. It seems the chemo has a residual effect and the daily G-CSF / neupogen hasn’t yet turned it around.

We are relieved that we are able to stay home tonight. There was some discussion of admitting Keith right away to get transfused, but since he claims he is feeling fine we were spared the inpatient admission.

Once Keith finishes being transfused sometime before noon his day at the hospital is not over. He will head to radiology for two more tests – a bone scan which requires a radio-isotope injection and a CT scan of his head. On top of it all he is severely neutropenic now, so he will need to wear a mask when he is not in an isolation room.

So a long and not a particularly fun day in store for Keith tomorrow, yet he seems to take it all in stride.

Well, there is the dog-faced puffer to look forward to.

FRIDAY, DECEMBER 01, 2006 10:18 PM, PST

Parent’s Note:

Keith toughed it out and made it through a long day of pokes, prods, IV drips, long scans and tests interspersed with lots of waiting (aka: boredom) in between. He did pay a visit to his new friend the dog-faced puffer in one of the waiting rooms but in general not a particularly fun day. On the other hand what had to get done got done and by late afternoon he was back home where he hit the sofa exhausted and slept until dinner.

Now at 10 pm with his new batch of red blood cells and platelets he is awake and recharged, ready to play WOW through the wee hours (if he could have his way).

Everything should be in place for him to have a good weekend with no scheduled medical events, and maybe he can even begin to pull his ANC out of the cellar so that next week he can romp with his friends again.


Parent’s Note:

Good days don’t necessarily require sensational news or big victories. Sometimes good days are quietly absent of any of that and this was one of those simple days.

So in keeping with the simple day, I offer a simple journal entry. Keith feels good and is back to his humorous, witty self again. What more could we ask for....?

SUNDAY, DECEMBER 03, 2006 10:48 PM, PST

Parent’s Note:

Pretty much a ditto of yesterday as far as Keith was concerned – it was a very slothful weekend by most accounts. Keith is feeling good and eating well to boot. I should say that we did in fact manage to pry him off his computer long enough for a quick trip to the local nursery were we picked out a Christmas tree. It will be delivered sometime in the next couple of weeks after we know more about Keith’s treatment schedule.

While we were there, Keith homed in on their cactus collection and picked out a few eclectic ones to add to the potted cactus garden at home. A couple of them were quite ‘Seussian’ in appearance.

We’ve had several family visitors lately. Keith’s aunt Christine is heading back to Virginia as I write this after almost a week with us and his uncles John and Chris were here recently as well. Great to see all of them and their help was much appreciated.

This Tuesday we will meet with Keith’s surgeon to discuss the upcoming procedure to remove his remaining abdominal tumor. It’s not clear when the surgery will be but it will most likely occur sometime within the next ten days, possibly even later this week, meaning that Keith should be out of the hospital and back home in time to enjoy Christmas.

Keith and Scott have put in their collective request. No little white lights on the tree this year. No, they want colored lights. Big ones.

MONDAY, DECEMBER 04, 2006 11:42 PM, PST

Parent’s Note:

I was only able to spend a few minutes with Keith today, so I can’t give you a blow-by-blow of his day. My first encounter was when I had to wake him up early in the morning before leaving for work to draw his lab samples. My second and final encounter was as he and Josie were heading off to Children’s Hospital for an unplanned overnight stay at around 5:30.

It seems that once again his hemoglobin and platelet counts are very low and he is in need of yet another transfusion of both. It’s too bad we couldn’t have found out earlier in the day so that we could handle this on an outpatient basis, but what can you do….

So other than this inconvenient little sleep over Keith presumably had another good day and felt ok despite ‘running on empty’.

20,000 visits and counting….. Thanks to everyone for checking in and keeping up with Keith’s progress.

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