Month: March 2015

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Pre-Vaccine: Getting closer and closer to normal (Day +210)

Clark had a follow-up appointment at UCSF. These appointments keep getting easier and easier! With the exception of our drive at 6:30am to beat traffic, and the price of parking… but I can get over that. I still love the fact that there is no more IViG.

Clark continues to amaze the doctors. He is a “normal”  thriving, growing boy. So far there is no sign of GvHD (yay!), and all of his blood counts are staying in the average range. The main reason for this appointment was to set up a vaccine schedule. Since Clark’s immunity, antibodies, vaccines etc.. are all in the blood, there is a large chance that Clark’s antibodies and vaccines were “wiped out” when he received his transplant.

To check Clark’s antibodies, they needed to do a blood test. This is not once of Clark’s favorite tests.  There was a lot of screaming, and Connor looked so sad for Clark. But even though it took a few minutes to complete, the phlebotomist was able to fill multiple vials with just 1 poke! And it beats having a broviac.

I love getting all of Clark’s test results sent directly to me on-line. I can see what tests were preformed, but even better, I can compare the results from previous dates.  Clark was tested for Tetanus, Diphtheria, Hepatitis, Polio, and Pneumococcal. I have not spoken with a doctor (or nurse) about Clark’s test results, but from my non-medical background, things look great! When I compare his pre-transplant results with today’s, it looks like he has SOME antibodies for each disease! This is not full protection, but hopefully it is something.

Some more tests worth noting: Chimera in September was at 95%, December was 98%, and today is 95% . The Chimera test refers to the % of blood that is from the donor. This is expected to fluctuate slightly for the next couple of years, and these are great numbers! Another number you may remember is Clark’s Lymphocytes. For Clark to get out of isolation, his CD T4 cells needed to reach 200. In January, Clark was at 194, but the doctors were confidant that this was high enough. Since then Clark has continued to climb, and is now at 278. Pre-transplant, he was over 1000, but he is making his way back to the top! Way to go Clark!

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Measles – a plea for help

As the parents of a child with a weak immune system, I would like to share my thoughts on vaccinations. You’ve probably heard both sides of the argument, but here is my 2 cents.

tl;dr, Please seriously consider vaccinating your child.

Clark is currently out of “isolation”.  Meaning, that it is now safe for him to come with me to the grocery store, play at the playground, and dig in the dirt.  It is even now safe for Clark to catch a common cold, or even the flu. His immune system should be strong enough to fight these off (it is still a gamble, to some degree).

But to our chagrin, our post-isolation elation was short lived. As soon as we got the good news, measles started to spread in our area.  Unfortunately close to 7% of the children in Marin are not vaccinated. That is a lot considering the national average is 2.5%.

Now you might ask – with only 7% risk in a small county next door, why panic?  Frankly, at first we didn’t panic, until we learned a little more about the measles.  Surprisingly, measles are extremely contagious.  How contagious you ask? Try this on for size: if a person with the measles is in a room, breathing, and leaves the room – you can still catch the measles up to 2 hours after they have left the room.  I know what you are thinking, “holy sh*t“… right?!?  Don’t believe us?  Here’s the quote from the CDC themselves:

Measles spreads when a person infected with the measles virus breathes, coughs, or sneezes. It is very contagious. You can catch measles just by being in a room where a person with measles has been, up to 2 hours after that person is gone. And you can catch measles from an infected person even before they have a measles rash. Almost everyone who has not had the MMR shot will get measles if they are exposed to the measles virus. Link: http://www.cdc.gov/vaccines/vpd-vac/measles/fs-parents.html

There is a very high likelihood that Clark would not survive getting the measles.  Because of this, we decided to continue to keep Clark in a “semi-isolation”.  His immune system is not strong enough to fight off major diseases like the measles, chicken pox, etc.

My husband, myself, and our oldest child are all up-to-date with our vaccines. Clark’s vaccination schedule starts in late March, and I can’t wait. Not only does  this prevent our family from catching deadly diseases, it also prevents us from spreading it to others.

So I beg you, please vaccinate your children.