Category: Clark’s Progress

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!

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.

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.

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.