Month: November 2014

We've Been Counting...

(to the tune of "The Ants Go Marching 
One By One")

We've all been counting one-by-one,
Hurrah! Hurrah!
We've all been counting, oh what fun,
Hurray! Hurrah!
We've all been counting one-by-one,
And now 100 days are done,
Today's the 100th day of BMT!
Of BMT, hurrah!

Boom, boom, boom.

We've all been counting two-by-two,
Hurrah! Hurrah!
We've all been counting, what a zoo,
Hurray! Hurrah!
We've all been counting two-by-two,
And now 100 days are gone with no flu,
Today's the 100th day of BMT!
Of BMT, hurrah!

Boom, boom, boom.

We've all been counting five-by-five,
Hurrah! Hurrah!
We've all been counting, days he's been alive,
Hurray! Hurrah!
We've all been counting five-by-five,
And Clarkie has made it and thrived,
Today's the 100th day of BMT!
Of BMT, hurrah!

Boom, boom, boom.

We've all been counting ten-by-ten,
Hurrah! Hurrah!
We've all been counting, and asking when,
Hurray! Hurrah!
We've all been counting ten-by-ten,
Is it safe for Clarkie to be outside again?
Today is the 100th day of BMT!
Of BMT,

HURRAH!
                                    - Anonymous

Today is a very special milestone for Clark.  On this day of thanks (American Thanksgiving), we have another wonderful thing to be thankful for.  From August 20th (his second birthday) to this year’s American Thanksgiving – we have arrived at Clark’s 100th day of BMT.

The reason why day 100 is so important, is because the risk for complications from the transplant is highest during the first 100 days after a transplant. Graft-versus-host disease (GvHD) is a common complication after a transplant. In GvHD, the immune cells from the donated marrow or cord blood (the graft) attack the body of the transplant patient (the host).

GvHD that appears in the first 100 days after transplant is called Acute GvHD. Clark is now past the point of getting Acute GvHD! When GvHD occurs past day 100, it is called Chronic GvHD. This is still a possibility, and something we will watch out for over the next 2+ years.

To celebrate Day +100, we will be enjoying a delicious Thanksgiving dinner (and pie!). Even though this has been a tough year, I feel like I am incredibly lucky.  And so I would like to give thanks:

• I am so thankful for my handsome, helpful, loving husband (that’s you Patrick!).
• I am thankful for my 2 cuddly, adorable sons.
• I am thankful for all of the family and friends in our lives (even from a distance while on isolation).
• And, finally,  I am eternally thankful to Clark’s anonymous bone marrow donor.  Thank you for the gift of life for my son.

Happy (American) Thanksgiving everyone.  May peace and happiness be in all your hearts this holiday.

 

 

On day +77, Clark had his regular 4 week check-up.  This included a blood draw, bandage change and IViG infusion. Since Clark had his immune system wiped out from Chemo, getting regular infusions of IViG is vital to his health. Intravenous immunoglobulin (IViG) is antibodies collected from the plasma of a healthy person.  This product is donated similar to blood. (Thank you donors!) So, if you are able, please consider donating blood, platelets, plasma or bone marrow. Your generosity will literally save someones life!

Other than the fact that Clark gets bored and tired during these long appointments, things went really well. And in this case, we received some really good news! The doctors have decided to test the functionality of Clark’s Lymphocytes early! This is a test we were expecting closer to day 100.

As we’ve talked about in earlier posts, a lymphocyte is a special type of White Blood Cell (WBC) that was killed off by chemo.  This is done to prevent GvHD in the early stages of a BMT. Generally when checking the value of Clark’s lymphocytes, we get an ALC (Absolute Lymphocyte Count) which consist of NK cells, T cells and B cells. What we are watching for right now is his T cells.  If Clark’s T cells are at least 25% of his ALC and they are functional…. Clark will no longer need to be in isolation!!

We are still waiting for results because the blood will be sent to the Mayo Clinic for the tests.

The way they test Clark’s lymphocyte functionality is pretty cool. Basically, they give his blood (from the sample) an actual infection. Then they watch for days to see how well the T cells destroy the invaders, and how quickly they can react.

Some other exciting news is that Clark is tapering his cyclosporin. Just a few months ago, Clark was taking 0.35mL three times/day. Now he is taking 0.15 twice/day. And by November 28th, he will no longer be taking it! Cyclosporin is an immuno-suppressant. He needs to take this to prevent his new marrow from attacking his old marrow. The slow tapering is to prevent GvHD. So far so good (no signs of GvHD)!

The first sign of GvHD is usually a skin rash.  And because of this, we’ve definitely been anxious a couple times over the last couple months.  Clark has sensitive skin (runs in the family), and when ever he rubs his face on a shirt, the carpet, or Patrick’s unshaven face… he gets a big blotchy red marks that can last about 30 minutes. So a couple times now we’ve seen bright redness on Clark’s face or arms, freaked out, and then calmed down and had to wait a half hour to make sure it was just from playing.  So far, we’ve been lucky and it’s faded.  With “real” GvHD, the rash would stay, and possibly continue to worsen.

Even though we had an “isolated Halloween”, we still had a blast! We ended up doing a little twist on the standard Halloween routine.  We “trick-or-treated” inside our apartment building (Clark wearing a mask), and instead of asking for candy, we handed out caramel popcorn! This was fun for the boys, because they wanted to show off their costumes. :)

I have to admit I may have gone overboard in the candy department. While I only bought a couple small bags of chocolate for the boys, I also ended up making homemade caramel popcorn and peanut butter Nanaimo bars. Yum!

Patrick and I also made a glow in the dark diorama for the boys that lit up with a black light! It was filled with tiny surprises of fairies, pumpkins and skeletons!

Since it was Friday, dinner had to be pizza.  And to combine two great traditions, we made pizza’s filled with olive and pepperoni spiders!!  The kids loved the look of this pizza!  We closed the evening with a family friendly Halloween movie – Bed knobs and Broomsticks. :)  What a great movie that film is.  Adventure and wonderful craziness with the apprentice witch Angela Lansbury.