Author: Bethany

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.

After having our non-traditional Christmas at UCSF, we decided to do a “Christmas Redux” so we could finally exchange our gifts and eat all the yummy Christmas food that had so patiently waited for us in the fridge.

After getting out of the hospital on the 26th, we decided to take an entire day to prepare for Christmas Redux.  So we spent the 27th as we would any other Christmas Eve. Patrick took the boys out for a nice long walk while I filled the stockings and wrapped the last of the gifts. We ate chocolates and watched Christmas movies. Connor helped me leave out cookies and milk for Santa, and carrots for the reindeer. And once the boys were tucked in their beds, dreaming of sugar plums, Mommy and Daddy snuck all of the gifts under the tree, set out the stockings, and made our favorite Christmas morning breakfast, Holiday Strata.  Strata is the only way to do Christmas breakfast.  I love the fact that I only need to place the strata in the oven Christmas morning, drink a cup of coffee and eat a pound of chocolate, and then faster than you can say “Jingle BAM!!” – breakfast is served.

Christmas Redux morning (the 28th) was full of excitement! Connor was the first one up (thankfully just after 7am)! Climbed into our bed (for a little cuddle) and then practically dragged us out to look at his gifts! Being the realistic parents we are, we decided that anticipation is the best part of Christmas.  So instead of letting the boys tear open their gifts, we first enjoyed our stockings (tons of goodies in there!), followed by breakfast. Next, we had our ritual Christmas morning walk. In California, you never know how hot it is going to get. However, in December, it is usually quite a bit cooler…. especially in the morning. With the morning fog and the cool air, it almost feels like our Canadian Winter Wonderland.  This is the season I miss home the most.

Around 10:30am, it was FINALLY time for gifts! The boys spent 3 hours savoring every moment. Open one toy, play with it for a bit, then open the next. Connor was having so much fun, he kept asking to open up every one else’s gifts! Clark on the other hand was content opening 2 gifts, and then playing the rest of the time. He also managed to climb into some of the bigger boxes and attempted to drive them around the block.

The rest of the day was spent PLAYING! So much to play with! We also finished off most of our cookies, squares and chocolates, as well as a cheese ball before dinner. :) Thankfully dinner was mostly veggies with a side of tri-tip steak. We had such a wonderful Christmas. I was a little worried it wouldn’t feel like the real thing, but it did! And even though we weren’t able to spend the holidays with our family and friends, you were all in our hearts.

Clark’s weekly lab results over the last few months have consistently been all good news. We have seen his platelets go from 0 to 275,000 and hold. His hemoglobin (in his RBC) was at 7 and dropping before his BMT, are now at a normal range of 11.9 and is increasing.  And finally, his white blood cells (WBC) are also slowly increasing (this includes the T cells and B cells, which we we are closely watching to see when he can leave isolation).

So the question is: if Clark is doing so well, why are we checking his blood every week? Well, as it turns out, they are doing a lot more than checking his Complete Blood Count (CBC). They are also checking to make sure there is no organ failure (side effects of certain medications, GvHD, or the Transplant). They are also checking for specific virus’ such as EBV and CMV because they can cause some major complications for someone with a low functioning immune system. So far, all of these test are also showing great results!

Mid November, the doctors decided it would be safe to cut back Clark’s blood draws to every second week! Yay! And then, during our last visit, we were told that Clark only needs to have a blood draw once a month! This way, all of Clark’s blood draws will be done during doctors appointments. No more blood draws at home! Yippee!  This is huge, and really shows the confidence the doctors have in Clark’s recovery.

 

Patrick travels internationally for work. During Clark’s BMT and recovery, his boss has been very supportive and has let Patrick work from home as often as possible.

Even with a very supportive work environment, Patrick still needs to do his job. So over the last couple months, he has needed to travel on a few business trips. Mostly to Mexico and South America, as well as one trip to Portland Oregon. And of all the places he could have got some strange disease, it was actually in Portland that Patrick picked up some awful flu.

Since Clark’s immune system is so weak right now, catching a cold is very dangerous. We were extremely lucky that Patrick started getting symptoms before he flew home. This gave us just enough time to do some planning.

It seems that every cold and flu is a little different, so there isn’t an exact number of days that you are considered contagious. In general, we were told that most people are contagious 2 days before they show symptoms and continue staying contagious up to 2-3 weeks after starting to show symptoms. The most contagious part of a cold is during it’s peak (while you are coughing, sneezing, blowing your nose and feeling terrible).

As soon as Patrick flew back to California, he booked a hotel near the house, and stayed there for 3 nights. I would stop by every night to drop off food and visit with him. It was tough on him.  He was in miserable shape, and everyone who loved him had to stay far away.  But we all knew the risks, and neither he nor I wanted to risk Clark’s health.

Around day 5 of his cold, we decided it would be ok to have Patrick come back home. Even so, we had some very strict guidelines though. Patrick had to stay in the back bedroom (master) with the doors locked  (because we knew the boys would try to sneak in to see him). There is a full en-suite bathroom on the master bedroom, and Patrick’s computer/ office is in there as well. So thankfully he still had a way to work, or be entertained by movies in the evenings.

The day before Patrick came home, Rosemary had to return to Canada. She was so incredibly helpful over the entire 6 months she spent with us. I honestly don’t think we would have survived without her.  There was a benefit to the timing of Patrick’s cold, and when Rosemary went home…. this made room for me to sleep on the fold out couch while Patrick took over the master bedroom. :) We had this arrangement for about 6 days, until we were (pretty) sure that Patrick wasn’t contagious anymore.

The good news is that the planning paid off, and no one else got sick.  Meanwhile, at least 6-7 people Patrick works with also got sick – so this was definitely a contagious bug!

Here are a few extra thoughts for anyone in a similar situation with a neutropenic child:

1) Before Patrick came home, I packed up my clothes, toiletries and other items I might need to use over the next week. I shared a closet and the bathroom with the boys. I also packed up the playpen (which we had at the end of the bed), and made sure there were no toys in the room.  This would reduce the number of trips needed to visit the room, reducing the chances of touching something that was contaminated and exposing Clark to it.

2) I was the only one with in-and-out privileges. Patrick was not allowed to go into the kitchen to grab food, or anywhere else in the house. I would bring him food, tea, vitamins etc.. whenever he needed (and I was available). This was always done with mask and gloves.

3) We left a large bottle of hand sanitizer inside the bedroom door.

4) During the worst of Patrick’s cold, he would wear a mask while working on the computer or watching a movie. This helped prevent germs from spraying everything from his coughs and sneezes, especially since computer screens and keyboards can be a bit difficult to sanitize safely.

5) Once we determined that Patrick was no longer contagious, I (with the help of Patrick) went into the bedroom with a mask and gloves to change the bedsheets, pillowcases, and towels.  Sanitized all of the doorknobs, dresser knobs, alarm clock buttons, etc… and any surfaces he may have touched or coughed on.

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.