Author: Patrick

This year we decided to have a non-traditional Christmas.  Forget the Christmas tree, forget the big turkey dinner… In fact, forget having it at home altogether. No, this year was very “antiseptic chic”, and was a mixed blessing.  That said, we hope this is the first and last time we do Christmas this way.

While I suggest that “we” chose this year’s method of celebration, in reality it was DKC that made all the choices for us.  It started on Dec 22nd, when young Clark woke up at 10pm, cranky and sweaty.  His temperature was 102 degrees.  This, by default, always means a call to our BMT specialists and a subsequent trip to the local emergency room.

After a painful (but typical) “all nighter” in the emergency room, we were sent home and told to wait for a call about the blood culture they had pulled from Clark.  Sure enough, 24 hours later, we got a call saying that Clark had Gram Negative Rods in his blood and that we would need to be admitted to the hospital. So at 7am on Dec 24th, we packed our bags, and headed out to UCSF to enjoy our “modern minimalist” Christmas.

If this sounds at all familiar, it is because this is the second time Clark has had a blood infection.  And just like last time, he had Gram Negative Rods as well.  So we knew the drill, and we knew our stay would easily be 3-4 days.

But as I suggested, the trip was really a mixed blessing.  UCSF definitely made the best of a terrible situation (Thank you UCSF!), and in fact, there was also some silver linings…

The bad news, was that we had to spend Christmas Eve, Christmas Day, and Boxing day in the hospital.  And, there is no denying it, it sucked.  Trapped inside a hospital room, with 2 little high-energy boys, was a disaster in the making.

But there was some good news as well.  The hospital was kind enough to let us all stay together.  In the past, other hospitals have not allowed children under the age of 12 to stay overnight.  But UCSF has no such rule, and for that, we thank them!

As well, since we had to stay over Christmas, everyone was super, incredibly, patient and kind to us.  It was really nice how everyone working those days tried so hard to make our stay comfortable and (as much as possible) enjoyable – especially since each and every one of them were also sacrificing time with their own loved ones and family.

Finally, if there was ever a chance to show our budding 4 year old that indeed there is a Santa Clause, it happened during our stay.

Bright and early on Christmas day, Connor awoke from the couch he and I were sharing.  I asked him what was wrong.  He ignored me, climbed over my crumpled body and jumped to the ground. He then walked over and opened the bathroom door.  I asked him if he had to go to the bathroom, and he said “no”.  So I asked him what he was doing?  He said, “I’m looking for the presents Santa left”.

This was a bit of a shock.  Beth and I were not prepared to give them gifts.  There simply wasn’t time to wrap and pack them, and we had thought we would just re-do Christmas after we were discharged.  But somehow – the true calendar day had not escaped our 4 year old child prodigy. He knew December 25th had arrived, and he knew Santa Clause should have left gifts.

I was startled, and I looked over at Beth for an answer.  But she just smiled, and told Connor to look in the chair near the door.  And this readers, made me a true believer as well.  In the chair beside the door sat 2 huge cloth bags.  One with a tag saying “Connor” and one with a tag saying “Clark”.  And sure enough, they were filled with wonderful books, puzzles and toys for both boys.  Santa had found them, even in their 7th floor hospital room!!  Connor was, how to say this… ecstatic.

As it turns out, the Child Life staff at UCSF were prepared for just such an event, and they put together bags of toys for all the children having to be hospitalized over Christmas Day.  Beth and I were so thankful.  UCSF, once again, had not failed us nor our boys.  What a wonderful surprise.  Thank you so much UCSF!

Santa Clause had remembered the boys, but what about Beth and I?  Surprisingly, Santa didn’t forget about us either.  We got our gift a couple hours before the kids did, at 12:30am Christmas morning.  At just after midnight, the UCSF Operating team removed Clark’s broviac.  The reasons had to do with the possibility it was harboring his blood infection, but whatever the reason, we were glad to see it go.  After over 9 months of flushes, cap changes, bandage changes, etc…, we could not have asked for a greater “gift”.  And our little boy’s cherub like stomach is once again free of any medical technology.  It is like he is a normal little boy, capable of “real” baths, wrestling, and jumping in puddles.  This really was a wonderful gift, and for that – we are thankful for our non-traditional Christmas.

Wow – we’ve had an absolute flurry of activity over the last 4 days… The biggest news is that Clark has been released from UCSF, and we are all at home now.

It is great news, but it required us to “sterilize” the apartment.  This included steam cleaning all the carpets, washing all the fixtures and walls, and scrubbing all the toys in the house.  It was a long 2 days of preparation.

We are still in a state of isolation at home, but the rules are a little more relaxed than at the hospital.  We are allowed to have the windows open for fresh air, but we have to dust regularly.  As well, we can have people over (in small groups) as long as they are confident they are not sick, have not had a live vaccine in the last 4 weeks, or have not been exposed to anyone with chicken pox in the last 2 weeks.  As well, we cannot take Clark anywhere out in crowds or in public enclosed spaces (malls, restaurants, etc…).  All of this will continue until we see the return of Clark’s T cells and B cells.

Finally, we still have 12 medicines Clark is on, that require a strict schedule of delivery.  It seems like Beth is constantly giving Clark medicines throughout the day.

One small downside of being home is that we don’t get to see Clark’s “numbers” every day.  Instead, we will do blood draws twice a week (Monday & Thursday) for the lab.  Beth and I are a little addicted to seeing these numbers on a daily basis, and we’re going through a little withdrawal not knowing how he is progressing.   On the plus side, we’re hoping for more dramatic change between reports!

Regardless, both boys seem much happier being together.  They are having fun running around and chasing each other and being spoiled by Granmom.  They also really like being able to see both Mom and Dad together at home on a regular basis.

So, as it turns out, there are a couple reasons why the doctors aren’t as “excited” as we are at the rising ANC numbers.

From our perspective, we assumed going from 0 ANC to 400 ANC (today’s reading), meant that the bone marrow cells must have taken root and were growing and producing white blood cells and neutrophils.

But this isn’t quite true.  At least, it isn’t the only scenario!

First… It is possible the body’s “old” bone marrow is the one growing and producing the ANC we are seeing.  In which case, we’ll get to a number somewhere between 400 and 600, and it won’t go any higher.  We’re looking forward to ANC counts well above 1000, and maybe approaching 1500 to 2000 (on a regular basis).

Second… We assumed the new marrow must be in and growing, and that the risk of rejection had past.  But not necessarily true again. Bone marrow rejection can occur many months after it has been given. A sensitive DNA test known as the chimera test will be done at the 30 day mark to see if the transplanted bone marrow has taken root, and is in fact producing it’s own blood cells.

Just when you think you understand this process – it gets more complicated!

Clark got some time with Grandmom today, while Connor was able to spend time with Mom and Dad.  We were very lucky to be able to both be out of the hospital at the same time, and spend time with Connor.

Beth started by walking Connor through Golden Gate Park, and when Dad caught up, the three of us went to the California Academy of Science together.  The Academy of Science is just down the road from UCSF, and we can walk there in literally 10 minutes.  While the entire visit was under 2 hours, it felt like a whole day of fun.

This was my first visit, so I have to take a second to note how amazing and awesome the Cal Academy of Science is.  It is a zoo, rain forest, museum, aquarium and planetarium – all wrapped into one building!  On top of this, they have a ton of educational presentations and special events.  If you can’t learn something new every time you walk into this building, then you don’t have a pulse.

On this particular visit, we spent time downstairs in the aquarium side of the building.  They literally have multiple walls of fish, lit up with UV.  The fish look amazing.  Connor’s eyes were so wide, I was worried they might fall out of his head.

Upstairs, they have a swamp exhibit where we got a chance to see an alligator up close.  But not any alligator, an albino alligator.  Yes, it is real.  And yes, it is white.  Double wow.