WEDNESDAY, MARCH 07, 2007 09:45 PM, PST
Parent’s Note: Day Zero – Transplant Day
This was a big day. I hesitate to use the term ‘mission accomplished’ but that’s more or less what happened today. Keith was re-united with his stem cells and now begins the real work, the long wait for his bone marrow to roll out the red carpet welcome mat and invite these VIP cells to set up shop and get back to business. He is now resting comfortably and we are hoping for - and expecting - an uneventful night ahead.
Keith started this day on a great note – in the morning he was very animated and talkative – it was good to see him feeling happy and Keith-like. We were all excited on one hand by the importance of the day, yet trying on the other not to make too big a deal of it so that Keith would not feel anxious. By late morning a flurry of activity just outside his door signaled that the transplant was near. His stem cells, the total collected over three separate procedures had all arrived, still frozen from their stay in the liquid nitrogen motel. Keith’s lead BMT physician held up one of the flat metal sleeves with the cells still inside for him to see, dripping with streams of white vapors like witches’ brew at a Halloween party. One by one each of the five containers were unsealed and the contents, already in IV bags, were thawed in a water bath, hung on the IV pole and given back to him through his central line.
What followed was a bit less straightforward than we or the medical team had been expecting. Keith began to feel sick (expected) but his blood pressure, heart rate and blood chemistry soon started to swerve out of acceptable ranges (not expected). Suddenly there was a whole lot more attention being paid to Keith to try and figure out what was going on with him. There was tension in the air, no question, but the medical staff was quick and well equipped to handle the situation. After several tests over the next couple of hours the doctors began to relax a little, allowing us to relax, and the test results ultimately seemed to indicate everything was ok.
By mid afternoon he began to get the upper hand on his twitchy stomach and his vitals stabilized but he was pretty spent both emotionally and physically. He just wanted to curl up and watch TV without much talking, certainly not about medical stuff. Tomorrow is a scheduled rest day for him and as far as I’m concerned, he’s entitled to it.
I’m not cutting the same slack for his stem cells – they’ve had plenty of time to rest……it’s time for them to suck it up and get to work.
We know that there are so many friends and family tracking Keith’s progress, especially on this milestone day. Knowing your thoughts are with Keith is a great comfort to his parents and to him. And because many of you are interested in the events of this day, I’ll stop typing and get this posted - forgive the typos….
THURSDAY, MARCH 08, 2007 10:41 PM, PST
Parent’s Note: Day +1
If you look at the bright side, Keith is one day closer to being discharged, but the poor kid just wasn’t in a celebrating mood today. His body has had so many assaults on it lately he quite simply is not feeling good at all and has very little energy right now. I try not to focus on negative topics in this journal but today was a day where he faced three additional unpleasantries:
Unpleasantry # 1: He developed a moderate fever of 103 degrees today. It’s not clear what the cause is but he’s now on antibiotics and multiple blood cultures have been drawn to try figure it out. It is also not unexpected, it’s just we weren’t expecting it to happen so quickly.
Unpleasantry # 2: The promised mouth sores have indeed appeared and so talking for Keith is a little difficult and he needs constant pain relief. He is using small nods and eye movements to communicate whenever possible. Eating - well, it just isn’t happening right now. It’s a pretty safe bet that his entire GI track is sore as well.
Unpleasantry # 3: All he wanted to do was sleep today – after all it was a “rest” day. Unfortunately he didn’t sleep well at all last night, and trying to sleep in the room today was even more difficult for him. In part it was due to his fever and a lot of necessary nursing activity but also something you wouldn’t necessarily expect: construction noise and vibration. LPCH is completely renovating the floor below into a new cancer center which is great. However, it would seem the only tools they are allowed to use are roto-hammers – very noisy. At one point Keith asked for ear plugs to help cut out the considerable noise (as a matter of full disclosure, I’m not an innocent bystander on this topic, as design and construction is my craft).
He’ll get through this in time but it’s really hard right now and not a lot of fun as you can imagine. The only comparison that comes to mind to describe what he’s been through and what is to come is something like the image of dragging yourself across the finish line of a full marathon, exhausted, only to line up again to start another one.
He did end the day on a brighter note – his fever lowered by a couple of degrees and he perked up enough to watch part of “Survivor” on the television.
FRIDAY, MARCH 09, 2007 10:41 PM, PST
Parent’s Note: Day +2
Keith had a relatively peaceful day today and everyone is doing their best to just let him sleep as much as he needs. There were several times when he perked up enough to lie quietly and watch TV for a while - then it was back to sleep. He continues to communicate using hand gestures and nods whenever possible and the nurses have picked up on this, doing their best to get the feedback they need without causing Keith any unnecessary discomfort.
Unfortunately he hasn’t been able to shake the fever he's had since yesterday but on the whole he seems a little more comfortable, so we’ll call it a pretty good day.
SATURDAY, MARCH 10, 2007 10:41 PM, PST
Parent’s Note: Day +3
Turns out Keith’s lead doctor is a mass murderer.
Ok, how’s that for a dramatic opener? Well, it was a quiet day in the BMT unit as weekends tend to be, at least from the physician’s perspective. Many if not most of the doctors here have clinical, research and teaching responsibilities during the week in and around Stanford. So Dr. W., the head of the BMT program here, spent about an hour with us in Keith’s room – not because of medical necessity – but just because he wanted to. We wound up talking about a wide range of topics including our crazy youths (he was a cabbie in NYC at one point) to ‘jackalopes’ in Nebraska and current architecture trends to name a few. At one point he looked over to Scott and asked what it was he was playing so intently on the computer.
Dr. W: “What is that you’re playing?”
Scott: “It’s called World of Warcraft.”
Dr. W: “So what is it that you actually do in World of Warcraft”
Scott: “Well, right now I’m just going around and killing things.”
You can imagine how proud I was at that moment, and it was this exchange that led Dr. W to reveal his dark side – his homicidal side.
I continued on saying “I don’t suppose you could even consider playing this game, having sworn to the Hyppocratic oath.” to which Dr. W responded “Oh, I took the oath all right, but I’m a cold blooded killer just the same. If I had to add up all of the cancer cells and bacterium I’ve killed it would probably total in the quadrillions. I’m a confessed mass murderer.”
There you go. He’s a psychotic killer when it comes to cancer cells. That got me to thinking of a couple of things: A) this is the right guy for Keith to have on his team, and B) maybe if I just imagine all of Keith and Scott’s ‘enemies’ in WoW as cancer cells, I might not be so offended by the actual game-play….
Of course we also talked about Keith. At the time he was sleeping, but Dr. W. explained that unfortunately what Keith was going through was par for the course. “We’ve become really good at treating this disease – we’ve just not figured out how to keep kids from feeling rotten during the treatment. We’re still working on that.”
Keith is suffering from primarily from Mucositis, a condition caused by the intense chemotherapy he received that has resulted in a breakdown in the lining of his entire digestive system. This is likely the primary cause of his fever. Because the lining of his GI track is raw, bacteria now have a free pass to get into trouble. There is also a growing concern he has some sort of opportunistic fungal infection, and if his fever doesn’t break soon he will begin receiving medications that target that cause. All day long his fever has been hovering around 103 and even as high as 104. Everyone would like very much to see it dissipate.
As difficult as this is for Keith, Dr. W. indicated he wouldn’t be surprised if it got slightly worse before things started to turn for the better. On top of that it looks like any improvement won’t happen for at least nine or ten more days which is the absolute earliest his own immune system might be in a position to begin fighting for itself, allowing Keith to begin mending again. Again, Keith is not swerving outside of what is expected, it’s just a reminder to everyone that if you can avoid going through a BMT consider yourselves fortunate.
Keith is very sore and thankfully he is on continuous pain medication – he appears to be mostly comfortable, although very, very sleepy and weak right now. I just wish we could fast forward through this period.
SUNDAY, MARCH 11, 2007 10:36 PM, PDT
Parent’s Note: Day +4
I wish I could report some significant positive developments today but alas it’s more of the same for Keith. His fever did break for a few hours overnight but returned again during the day, so it looks likely he will begin to receive additional medication to target fungal infections. He received a unit of blood last night and probably platelets tonight – all normal for this protocol. In fact, he should start to receive transfusions daily as his system continues to chew up platelets and red blood cells. He is receiving daily GCSF infusions to entice white blood cell growth, but it will be quite a while before we start to see any results. Apart from these highlights, Keith again spent the day very quietly, stoically and bravely – only occasionally opening his eyes and directing his gaze over Scott’s shoulder to his computer screen in an attempt to escape for a moment or two.
MONDAY, MARCH 12, 2007 08:11 PM, PDT
Parent’s Note: Day +5
A quick entry while I still have an internet connection.
Keith seemed to have a better day than the past two. His fever is still hanging around so indeed he was started on the anti-fungal meds. Perhaps the medication is having an effect because there were periods when the fever lowered and he seemed more alert and engaged, sitting up in bed and watching cartoons for most of the afternoon.
His liver and kidney function checked out ok and the physicians are quite pleased about that, as are we. So all in all, things seem better today although there is still a long way to go.
Keith received a wonderful art poster from his Wagner Ranch schoolmates depicting all sorts of sea life. It is now hanging on the wall opposite his bed so he can enjoy looking at it. Thanks to all of the artists!