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It’s been awhile since we gave an update on Adrian.  Time sure has flown by the last couple months (in a good way).  AJ’s been happy and healthy, and thankfully we haven’t had any trips to the hospital outside of regular monthly check-ups.

AJ had a monthly appointment this morning and all of his blood counts look great.  In fact the doctor increased his dosage of methotrexate, one of his medications (they like to increase the dose as much as can be tolerated without bringing the counts down too low).  His ANC is at 2140 currently.  All in all, the monthly doctor visits and daily medication schedule has become somewhat routine.  It’s hard to believe he’s been in Maintenance for 6 months now, and also that we’re only a few weeks away from the 1-year mark of his diagnosis.  Amazing how different our lives are a year later, yet in many ways we are fortunate that many things are still the same and we are able to lead relatively normal lives — although sometimes it feels like there is a black cloud following us around, or at least it’s in the back of our minds.  Hopefully over time the cloud will dissipate and we’ll never have to worry about the disease coming back.

We had a super fun trip to Disneyland in April.  AJ and Camille loved it.  As parents it was touching to see the joy on their faces as they explored the park, tried out the rides, and met various characters and princesses.  AJ surprised us by really enjoying some of the bigger/scarier rides.  He went on Space Mountain, Big Thunder Railroad and Splash Mountain multiple times.  His favorite ride was Star Tours, a simulation ride based on Star Wars in which a robot takes you on an adventure in a spaceship.  Camille, on the other hand, was a bit more timid when it came to the rides.  She was too small to go on some of the larger rides, but even if she were tall enough we don’t think she would have wanted to try them.  Her favorite turned out to be a Winnie the Pooh ride, which happened to be across from Splash Mountain.   Turns out Camille could ride the Winnie the Pooh ride with one parent 2-3 times in a row while AJ was on Splash Mountain with the other parent.  We approached our trip using the “Insiders Guide to Disneyland” philosophy, which is basically to get to the park super early and ride the rides in a certain order to minimize wait time.  We couldn’t have been happier with the results as we had very little wait time.  There were a couple mornings where we were able to enter the park an hour early and we probably knocked out 6-7 rides in that time, with no lines at all!

After Disneyland, we drove to Palm Desert to visit Sarah’s sister Laura and her husband Peter and son Jackson.  We had a fun visit, and the kids just loved swimming in the pool.  Laura was over 8 months pregnant at the time, and a few weeks after our visit (May 6) she gave birth to a healthy little girl named Alexandra.  AJ and Camille are excited to have another cousin!  Sarah and Camille are flying down to go visit Laura and the new baby this week, while AJ will stay at home with Brian.  Turns out Brian’s parents will be coming to town for a long weekend, so AJ will get to spend some time with Grammie and Bapa.

We don’t have any big summer plans yet, but we are looking forward to the nice warm weather and long days.

We almost pulled out the kids’ swimming pool this past weekend… but then decided it wasn’t quite warm enough yet.  We’re almost there though.  We’ll continue to give monthly or bi-monthly updates on AJ, but hoping for only continued good news.  As always, please continue to keep the little guy in your thoughts and prayers.

AJ and Lego creations

We’re about a month and a half into maintenance and Adrian is doing well.  Overall maintenance is much easier on him, but it hasn’t been without a few hiccups.  In mid-January, AJ caught a stomach virus that made him violently ill for several hours (vomiting and fever).  It passed quickly and he felt better within a few hours, but because he is a cancer patient it is something that Children’s Hospital takes very seriously (rightly so), so he was admitted to the hospital and monitored for 48 hours.  While he was in the hospital, Camille also caught the virus and spent an entire night vomiting, basically mirroring what had happened to AJ the previous evening.  After Camille had it, it made its way to Sarah, although Sarah had a much milder version.  Brian was the only one spared, thankfully, since one of us had to be with AJ at the hospital.

After that episode, things started to get back to normal at our house.  We went to Portland for a weekend to celebrate the birthdays of Rowan and Mateo, AJ and Camille’s 4-year old twin cousins.  It was the first time AJ had been out of the Seattle area since his diagnosis, and both kids had a good time.  AJ also started back at school on February 1, and he really loves his pre-K class.

However, being around kids in a classroom setting has a few drawbacks, one of them being that he is exposed to more germs.  He caught a minor cold that started last Friday, but by Sunday afternoon he had developed a fever and complained that his ear hurt.  So, given the protocol that we have to follow, this required a visit to the emergency room.  It was quickly discovered that it was an ear infection related to the cold, so he was given a round of IV antibiotics as well as oral antibiotics and we were sent home.  Of course, any visit to the emergency room takes forever, so the whole process took about 4 ½ hours.  So, that’s how AJ and Sarah spent Superbowl Sunday.  Turns out the cold was RSV, a common respiratory virus.  He seems to be doing just fine now, as his ear isn’t bothering him and his fever is gone.  We were told to expect that he would catch some minor bugs upon being reintroduced to school, but this will help his immune system build back up and it should get easier.

Aside from the two illnesses, AJ really is doing much better.  He has a lot of energy and is starting to look like his old self.  His hair is growing back and he looks like he has a buzz cut.  He recently has become obsessed with Legos.  Around Christmas-time we bought him a Lego advent calendar where he would open a new toy each day during the holidays.  This started peaking his interest, then Brian’s parents brought all of Brian’s old Legos to the house and passed them on to AJ.  Think thousands of bricks.  This really started stimulating his imagination, and he can literally spend hours building things.  We have bought him several sets that are for 6-12 or 7-12 year olds and he can build them all by himself.  He is also spending a lot of time writing and drawing, and has become quite the artist.  He is truly an amazing boy.

If all continues to go well we are considering a Disneyland vacation later this spring.  We had to miss our annual Hawaii vacation this year, so we are due for some R&R!

We continue to hope and pray for the best for AJ.  While the chance of relapse is low, it certainly weighs on our minds and it likely will for years to come.  Please continue to keep him in your thoughts.  Only 30 more months of treatment to go…

Merry Christmas!

Happy Holidays!  Since we last updated, a lot has happened.  In short, AJ has made it through the harshest phase of treatment (Delayed Intensification) relatively unscathed, an achievement worth celebrating!

However, as expected, his blood counts did drop dramatically starting late November during the most intense part of the chemotherapy.  His ANC dropped to zero again, and his hematocrit (HCT, measurement of red blood cells) dropped to 19, so the week after Thanksgiving he needed a blood transfusion.  No sweat, we went through many transfusions when he was first diagnosed, so we knew the drill and AJ did just fine.

After daily trips to Children’s, by mid- December his red blood cell and platelet counts had stabilized, and his ANC was hovering in the 300 range.  We were scheduled to start “Maintenance” on December 21, assuming his counts were good and ANC > 750.  However, the morning of the 21^st AJ woke up with a fever of 100.5.  We took him to his clinic appointment that morning.  There was some concern around the fever and when we got his blood counts back, his ANC had dropped back down to 0 again.  The doctors believe this is a result of something viral that he probably caught from Camille (who had a runny nose and cough for several days).  We were sent home and were told to monitor the fever.  If it didn’t go down within 8 hours, he would have been admitted to the hospital.  Thankfully, the fever gradually came down over the afternoon and we barely avoided having to spend Christmas week in the hospital.  Thank goodness, whatever it was he caught, it seemed to be mild.  However, because of the fever and low ANC count, Maintenance was delayed for at least 1 week.  We go back to Children’s tomorrow to see if the counts have rebounded (keeping fingers crossed).  We’ll give an update tomorrow if we get the green light to start Maintenance.

AJ has been feeling good and looks good, and aside from being bald, you probably would not be able to tell what he is going through.  (His hair should start growing back soon).  We had a great Christmas with Brian’s parents in town.  AJ and Camille have been entertained for days, actually weeks, with their advent calendars, the Elf on a Shelf, the Christmas tree and the many gifts they received.  I think they wish it could be Christmas all year!

On another note, our friend Dave Schappell, finished the Honolulu marathon on December 13, in honor of Adrian.  AJ was excited to see his name on Dave’s jersey.  Dave raised close to $16K for the Leukemia & Lymphoma Society and was the top fundraiser for the entire country for that marathon!  We are so proud of Dave and appreciate all of our friends and family who donated to this cause.

Guess who? Transformer and Tinkerbell ready for Halloween.

Well, we’re now officially into phase IV, Delayed Intensification, and so far so good.  AJ started a new drug called doxorubicin.  This is a potent reddish-colored anthracycline that apparently can damage your heart in high doses.  However, the dose that AJ is getting is fairly low and he only gets it 3 times, so we’ve been told not to be too concerned.  They will monitor his heart for any changes.  AJ also re-started the steroid, dexamethasone.  You may recall from phase I that this is really the only drug that has given AJ a lot of side effects – so we are expecting moodiness, muscle pain, food obsession, swelling and weight gain.  At first we were glad to see that he will only take the steroid for 7 days on, then have a 1 week break, then take it for another 7 days (as opposed to the 40 day run he had earlier in the summer).  However, at our last appointment we realized that the dose he is getting in this phase is almost double what he had before, so it will be interesting to see how it goes with a shorter duration but much higher dose.

On Thursday AJ went in for yet another spinal tap (he will get 30-40 spinal taps over the 3 years of treatment – he’s probably already had around 15).  This requires general anesthesia.  While he was under, he was also given 2 intramuscular shots of PEG-asparaginase.  He seemed pretty run-down after, but said he didn’t feel bad.

Delayed Intensification is often the most difficult phase for ALL patients.  It’s the last series of hard-core drugs that is meant to wipe out any remaining trace of leukemia that may be hiding in the body.  We’ve been told to expect that the next 8 weeks will be hard on AJ.  This phase often requires hospitalization.  We of course are hoping he will tolerate everything well and will not have any bumps in the road; however, it was good to have our expectations set so that we know what is “normal” in this phase.  After seeing the treatment calendar, we can see why it’s so hard.  There will be a couple weeks where he will be at Children’s for some sort of chemo every day, including Thanksgiving day.   Needless to say, we’ll be staying at home for the holidays this year!

We’ve been able to prevent AJ from catching anything, including the flu, even though both Camille and Sarah have had it.  Camille came down with it a couple weeks ago and Sarah had it this past weekend.  Both cases were relatively mild with fever, body aches and a cough.   Just as Camille was recovering, AJ came down with a fever.  Although the fever was low-grade, we took him to Children’s to get checked out in case it was the flu.  While he was at the hospital, his fever ended up going away.  But just to be safe he was tested for H1N1 which came back negative the next day.  We were given some Tamiflu in the meantime while waiting for the results, which we ended up not needing (though we are saving it just in case).

Although he was able to get the seasonal flu shot a couple of weeks ago, the H1N1 vaccine is still in very short supply so AJ has not gotten one yet.  At this point we will likely have to wait another 3-4 weeks when he is off steroids.  As a result, we will probably have a low-key Halloween weekend.

We’ll keep everyone posted as we go through the next few weeks.  Please keep AJ in your thoughts and prayers and let’s hope for a smooth ride.

AJ and Camille sitting in the yard

Everything continues to go well with AJ’s treatment.  He is two weeks into Phase III (Interim Maintenance).  This phase lasts 8 weeks and the main drugs are vincristine and methotrexate (given through IV) both of which he seems to be handling well so far.  Some of the common side effects can include: nausea, vomiting, loss of appetite, jaw pain, headaches, mouth sores, among other things.  Fortunately, AJ has not experienced many of these.  He tends to have a low appetite for the first day after the chemo is given, but after that his appetite seems to return.  Overall he appears to be feeling pretty good.  He is energetic, alert and happy.  He also looks good, especially considering what he’s going through.  He has lost most of the puffiness from the steroids and he has a healthy glow that he did not have a couple months ago.  His hair has thinned quite a bit, but he doesn’t necessarily look like a “cancer” patient, at least not yet.  We still aren’t sure if all of his hair will end up falling out.  Sadly, he is losing some of his eyelashes too.  AJ has always had beautiful, long eyelashes (any girl would be jealous).  On the bright side, the loss of a few eyelashes probably isn’t too noticeable to anyone but us, and of course those will grow back right along with his hair.

His blood counts are lower than they were a couple weeks ago, but we were told to expect it.  During this phase of treatment, they increase the dosage of drugs every 10 days until they reach the highest level they think he can tolerate.  Hence, the blood counts are allowed to drop until they get to a level that’s low enough to stabilize the chemo dose.  AJ’s ANC was around 1500 on Thursday, so if it drops to below 750 by our next visit his dosage may be lowered.

Now that we are part way through this phase, we’re feeling optimistic that AJ will be able to make it through the coming weeks of this phase without a ton of side effects.  Our main concern right now is not the chemotherapy but rather preventing AJ from getting sick (cold/flu/infection).  All of the hype about swine flu has us a little on edge.  Our oncologist tells us not to be overly concerned.  They have had leukemia patients at Children’s that had the H1N1 virus earlier this year and  they made it through just fine.  The current version of swine flu/H1N1 that’s out there is still relatively mild.  However, there is the possibility that it could change into something more powerful.  Given that children are especially vulnerable to the virus, and that AJ is immune-suppressed, it is highly recommended that he gets the H1N1 vaccine as soon as it is available.  We are waiting to get word on when that will be.

Other than worrying about the flu, we had another unfortunate event.  Our nanny left us high and dry.  She had been with us since May, and although she had given us a 1-year commitment at the end of July, she ended up resigning with no notice this past week.  Talk about adding to a stressful time.  Thank goodness our previous nanny Sarah G. was quick to pitch in and help.  (Our longtime nanny Sarah G.  had her first baby in May, that was why we had hired the new nanny in the first place).  We have family flying in again next week to help us with coverage until we can figure out what we are going to do.

On the positive side, we are looking forward to a relaxing weekend where we can focus on having fun with the kids and enjoying what’s left of the summer sun.  It’s supposed to be warm enough for us to get some more use out of our kiddie pool…