Monday, March 26, 2007

March 26th - 31st: The Slingshot

MONDAY, MARCH 26, 2007 10:41 PM, PDT

Parent’s Note: Day +19

Keith’s uncle, Jack Ferres, flew out from Boston yesterday and is staying with us for the next week or so. The boys always look forward to seeing him and today Jack and Scott drove down from Orinda after school let out to pay a visit to Keith. From what I heard Keith had a great time and was even coaxed out of his room for the first time in three weeks.

Let me elaborate on this.

The doctors couldn’t be happier with Keith’s recovery so far. What is of most interest to them now is getting him ready for discharge. It could take a couple more weeks but to that end, Keith needs to eat solid foods and drink on his own (hasn’t done that yet), take oral meds (hasn’t done that yet), have a stable ANC (working on that) and be physically able to move about on his own.

It was this latter topic that Keith decided he would tackle today. At first he didn’t want to do it, but after some negotiating he agreed that he would leave the room under his own power only if he could bring his ‘nerf’ slingshot with him. We’ve learned that compromise is useful in situations like this and Josie agreed to the deal. So with slingshot in hand, IV pole at the side and ‘light red’ facemask clamped to his head he left his HEPA filtered sanctuary and began to slowly circle the hallways around the nurses station. The slingshot soon came to action with Scott feeding Keith the soft, round ammo balls. Uncle Jack was the target and the more Jack was hit the faster he tried to escape being pummeled. Not to miss out on this fun, Keith raced to keep up the attacks. In the end Keith made a double loop around the unit, foam balls were flying everywhere and the nurses were cheering him on.

It was a good day. Fortunately LPCH’s accreditation assessment team wasn’t anywhere to be seen…..

TUESDAY, MARCH 27, 2007 11:03 PM, PDT

Parent’s Note: Day +20

Steady progress and happy doctors. The theme of the physician’s morning visit was to encourage Keith to work on swallowing, starting with small sips, working up to being able to take oral medication along with food & drink. The sooner he can do these things, the sooner the IV pole can be returned to the medical supply closet, allowing Keith to be shown the door to the outside world.

Keith’s mouth is feeling a lot better and even though his stomach is still twitchy these activities should be something he can work on over the next several days. He now knows that he can begin to take control of his life again and now has the incentive and motivation to shorten his stay.

WEDNESDAY, MARCH 28, 2007 09:16 PM, PDT

Parent’s Note:
Day +21

Continued progress today. Medically Keith is doing great – no issues with his counts or blood chemistry, he has lost the puffiness in his face, his liver seems to have returned to normal size and the doctors are still very happy with his solid rebound. Weaning Keith from the IV pole is the main priority now. Some things are slowly being discontinued, like his pain meds and others are being reduced, like his nutrition which will continue as nightly IV infusions after we are discharged. Still others will need to be continued in some other form, like oral medications that he is currently receiving via IV.

Josie and I received a primer course in how to administer his TPN, a custom made soup of proteins, carbohydrates, vitamins & amino acids. This along with another solution of lipids will need to be given to him by us nightly for quite some time after discharge. There are many steps to the process and a lot of plumbing involved but we’ll figure it out.

The oral medications shouldn’t be a big issue in the long term, but it presents Keith with his biggest current challenge. He still hasn’t started eating or drinking yet and he is quite apprehensive about swallowing the pills that are sitting in front of him right now. I’ll let you know if our attempt is successful or not in tomorrow’s entry. There are rumors flying about that Keith could be discharged as early as the middle of next week if he continues on this track and he is able to swallow his pills and eat.

Finally, the humorous picture is from a greeting card Keith received today that made us all laugh. I suppose Keith might begin feeling like the unfortunate cat as he itches for an escape from Room 2341.

THURSDAY, MARCH 29, 2007 09:52 PM, PDT

Parent’s Note: Day +22

Success! The pill was swallowed. Make that the pills.

Keith did a great job controlling his anxiety and made a huge step forward toward losing the IV pole. Keith had another good day and is still tracking the way the doctors expected, if not better. Since he has been off GCSF for quite a while his ANC has dropped as his own body takes up the responsibility of producing a new immune system. He is currently just below 500 but the sense is that he may be at his nadir and his counts should rise on their own soon. The hope is to avoid having to re-introduce GCSF again as it signals the body to produce only white blood cells at the expense of many other types of blood cells that are necessary for a functioning immune system.

Projecting forward to the date when Keith is finally discharged from the inpatient setting – possibly next week some time – we will unfortunately not be able to return to Orinda. The protocol for his BMT procedure requires that he remain within 15 minutes of Stanford (no bridges) so that in the event of a post-discharge complication he has quick access to medical support. So we have decided to relocate Keith to into a special room at the Ronald McDonald House a short distance from Lucile Packard. From what we have been able to discern the Ronald McDonald House seems quite attractive and the room that Keith would be assigned is one of six in a special immunocompromised wing fitted out with special air filtration and separated from the general rooms. House rules state that only one parent may spend the night with Keith and so we will continue a similar pattern to the one we have adopted for the past month or so with Josie and me rotating nights with Keith.

We are told that for quite some time after transplant, BMT patients are at increased risk for infection from the usual pathogens – viruses, bacteria & molds. So this seems like the sensible approach. The stay should last for about one month during which time Keith will frequent the clinic at LPCH for lab samples, check-ups and radiation treatment. The radiation plan is not yet clear and additional scans will be done to establish one in the next week or two. Radiation is standard for the protocol that Keith is following but will be targeted to a only few selected sites, and probably including the site of his originating solid tumor.

The pink mask and slingshot made an appearance again today and it seems to have almost become a highlight for the staff. Some have even made appointments with Keith to try their own hand at the slingshot in his room. The clock on the wall seems to be a favorite target. We seem to be really hard on clocks…..

FRIDAY, MARCH 30, 2007 10:58 PM, PDT

Parent’s Note: Day +23

Keith’s ANC slipped a bit further below 500 today so he did receive a dose of GCSF just to give his system a little boost. No big deal - it’s pretty normal for this to happen we’re told.

For entertainment and distraction, Keith has been enjoying a game called ‘Blokus’, a strategy game where each player begins with an identical number of irregularly shaped pieces. The object is to place as many of your pieces on the playing grid while blocking your opponent from doing the same. I’ve played at least 5 games with Keith and have gone winless so far. Josie has fared no better. Uncle Jack is the only challenger that has won a game (he won one, lost two) and I’m guessing that was probably because Keith was just trying to be nice to his uncle. No such leniency with his parents though. Keith has always been pretty good at math and my sense is he's as sharp as ever in that category.

The big news today is that Keith was unplugged from his IV pole for 3 hours during the afternoon – meaning no pain meds – and he was fine. He took the opportunity of this brief period of freedom to get out of his room and harass the nurses with his slingshot. Apparently legend of the slingshot has spread – and now even the lead physicians all want a crack at trying to hit the clock on the wall in his room.

What have we started here?

SATURDAY, MARCH 31, 2007 09:52 PM, PDT

Parent’s Note: Day +24

Keith’s day didn’t start out on a very positive note. He seemed tired, withdrawn and wasn’t interested in activities of any kind except watching TV. He complained that his stomach felt weird and sure enough we had several run-ins with the pink emesis basin before he started pulling out of it and feeling better toward mid-day. He made a strong recovery in the early afternoon, which was coincidently the time that Scott and Uncle Jack arrived. Keith was really looking forward to their visit today and with a dose of Zofran he was able to muster up enough energy to put on a good show for them and enjoy their visit. The first thing he wanted to do was to ‘battle’ Scott in a game of Blokus. Yep, he won. A bit later on he was disconnected from his IV pole, similar to yesterday, and we took advantage of the great weather to get out of the room and head up to the roof garden where Keith could walk around outside his room unfettered by his facemask. He looped around the full circuit, blowing some bubbles and watching them float off into the distance. It was good to see him make such a dramatic rebound after feeling crummy in the morning.

Medical update: The single GCSF infusion he received yesterday had a profound effect, boosting his ANC from a lowly 340 to over 5000. Amazing. He was also discontinued from his continuous pain relief. He seems to have no pain issues at the moment – it is the nausea that we need to overcome. Until we can figure this out he will continue refuse food and fluids. Obviously, he needs to be able to eat and drink before we will get the nod from the doctors to leave the confines of the hospital for good.

Around mid-afternoon, a building maintenance person stopped by the room and posted letter sized note above every plumbing fixture in the room. It said “Do not turn on water or flush toilets between 11pm and 5am. Workers will be connecting new drain lines in the construction area (below)”.

A hospital patient room without water? This should make for an interesting night…..

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