Pre-Vaccine: Out of isolation, and into the fire… (Day +154)

As of the end of January, Clark is officially out of isolation.  While he still has 6 months of BMT treatment, coming out of isolation was a huge milestone for us as Clark was finally able to leave the home and start getting out in the world.  He will be officially done his BMT treatment when he is vaccinated again (same vaccines as the original ones, but re-applied due to the new bone marrow).  In his current state his immunity is much like a new born baby.

Clark was released from isolation because his T cells (a part of his WBC which fights viruses and infections) were 194.  For comparisons sake, they were 0 at transplant and over 1000 prior to transplant.  At 194, the T cells are finally high enough to protect him from common colds.  Measles definitely not, but the sniffles – yes. We still have a ways to go, but this is another huge milestone! As well, Clark’s B cells (another part of his WBC) are high enough, and functional- so he no longer needs IViG.  Not doing IViG means we can stop the 3 hour transfusions we were doing monthly at UCSF.  Yeah!

In summary –  Clark no longer needs ANY medication for his BMT, and he can now play in the sand (and dirt)!  And best of all, we don’t have to rush to ER every time Clark has a fever.  Now – a fever could mean a flu or cold, or even teething. Before, a fever meant life threatening infection and a guaranteed week in the hospital with lines and fluids hooked up.

And the most important per of all?  Clark can swing with the big boys! Clark can finally have play dates with his friends. Getting a cold or minor flu is no longer life threatening. However, I think we will remain a bit cautious and ease into this new phase. For now, it’s just great that I can go grocery shopping with Clark.  For the last 12 months, this was a huge inconvenience because I would have to wait until the weekend or evenings when Patrick was home to do my shopping.

With all this, we still have some limitations.  As I mentioned earlier, Clark is like a newborn now, and he still has a weak immune system. So, we primarily need to watch out for the big viruses.  If Clark catches a cold, it’s probably no big deal. However, if he catches a bad flu (like the one going around right now), it could cause some complications (turning into pneumonia, respiratory distress etc…).  Measles?  Well, he probably wouldn’t survive.   Or maybe he might.  Frankly, we just don’t know how his new immune system will respond. And unfortunately, due to people choosing not to vaccinate their kids, whooping cough and the measles are a real threat here in Northern California.  So for the next couple weeks, Clark will continue to wear a mask while grocery shopping, and we will limit his playdates to friends who have been vaccinated.

Over the next 6 months Clark will get re-applications of all his previous vaccinations. We have to wait 3 months since his last IViG before the doctors can test Clark’s immune system (since IViG will skew the results). They want to find out if he still has some antibodies form his previous vaccines, or if they have been completely wiped out. We need to make sure the vaccines wont cause Clark complications, as well as make sure his body can retain these new antibodies. With the first round of vaccinations,  Clark will start his “dead” vaccines. If all goes well, Clark will slowly move onto receiving the more risky live virus vaccines.

BMT: Isolation (Day +150)

While Clark had his Broviac (Central Line), we needed supplies for it’s upkeep. This included a number of bandages, biopatch, Heparin, Saline, gloves, caps, masks etc….

Since his Broviac was unexpectedly taken out, I had a FULL box of supplies left! The pharmacy would not take them back, since they can’t re-sell a product that might have been tampered with, or has expired. And I didn’t want to throw out such valuable and expensive materials. Thankfully, I was still able to put them to good use. There are many organizations that take donations of medical supplies. Some are for local non-profit clinics, while other organizations send the supplies overseas to 3rd world countries. I was lucky enough to find a local organization close to us called MedShare. You can read about them here

If you have any extra medical supplies that are no longer needed, please consider donating. There are many organizations throughout the country.