brianutter.net

Wow, another year has come and gone.  June 25^th marked the 2-year anniversary of AJ’s leukemia diagnosis.  The date brought mixed emotions.   A sad reminder of the day our lives would be forever changed, and the reality of all that AJ has endured over the last two years.  On the flip side, there’s a wonderful feeling of accomplishment, knowing that AJ has made it this far – knowing that two years are behind us, and now we’re down to the last 12 months of treatment.  I guess we can see the glass half empty or the glass half full, and at this stage we are seeing the glass half full.

On the treatment side, we haven’t had any recent setbacks.  AJ was admitted to the hospital for a few days right after Easter for a fever, which thankfully turned out to be just a virus.  It did wipe out his blood counts for a couple weeks so his chemo had to be temporarily stopped.  However, once we restarted the chemo, his counts seem to have stabilized and in fact we are back in the mode of increasing chemo doses because the counts are looking good.  We just had another checkup at Children’s earlier this week, and we don’t have to go back until early September.  Woo-hoo!

We’ve had a great summer so far.  Well, weather-wise the summer has not be great (very late start to summer here), but we are making the most of it.  AJ had his kindergarten graduation in June, and actually misses being in school.  The kids are both doing soccer on Saturdays and loving it.  They are also enjoying having their Grammie and Bapa (Brian’s parents) so close, as they now live on Vashon Island.  It’s been great having family nearby.

We were able to spend the 4^th of July holiday up in Alaska visiting family.  The kids had a lot of fun, as we got to go on a boat ride, play at Pioneer Park and go on a “camping” excursion where we roasted hotdogs and made smores, and the kids got to go fishing.  And of course there were the fireworks on the 4^th, which also happened to be great Grandma’s birthday.  All in all, it was a fun trip.  Thanks Aunt Roro for planning so many activities!  We also just got back from southern Oregon visiting the other grandparents (Sarah’s mom & Larry).  We had a great time relaxing, playing in the water, catching frogs and lizards, and Camille especially loved the tree swing.

Sadly, we recently lost both remaining great Grandpas – Sarah’s grandpa passed in May and Brian’s passed just last week.  Rest in Peace Lewis and Merle.

As always, we appreciate your support and prayers.  Please keep AJ in your thoughts as we continue on this journey.

Our trip to Maui was awesome.  And we made it through with no health issues – whew!  Adrian had a doctor appointment the morning after we got back, and everything continues on track.  19 months of treatment left. Let’s hope for continued good health.

Everything continues to go well for our family. Adrian started kindergarten about 7 weeks ago and is really enjoying it. He is in a Spanish immersion school and is already picking up a lot of the language. Sarah speaks Spanish and amazingly can already have a partial conversation with him. His teacher is currently speaking 80% Spanish in the classroom and is quickly moving to 100%. In addition to learning Spanish, AJ is breezing through the school work so far. We had our first parent-teacher conference last week, and he got a glowing review from his teacher, who described him as a very bright child. He also scored very high on the reading and math assessment tests. If anything, the curriculum is on the easy side for AJ, so we are glad he has the added complexity of learning Spanish to keep him challenged.

First day of kindergarten.

Camille is attending pre-K class 3 mornings a week and has the same 2 teachers that AJ had last year. She seems to enjoy it and her writing skills have improved dramatically. Even a couple months ago she was struggling with writing her name, but she is now able to do so effortlessly. AJ is also teaching her Spanish – it is so cute to see him take on the role of teacher with her. She already knows some of the numbers and colors, and she has even picked up a few phrases like  “¿Puedo ir al baño?” (Can I go to the bathroom?)!  Both kids are still very active, with AJ continuing soccer and Camille now doing ballet.

AJ and Camille at the pumpkin patch.

We continue to be very fortunate on the health front. AJ’s doctor appointments have gone smoothly, and his blood counts continue to be in the range where they need to be during treatment. It’s hard to believe how far he’s come since his diagnosis 16 months ago. While the maintenance treatment has its challenges, it seems like a cakewalk compared to what he went through last year. We made our annual visit to the pumpkin patch last weekend and it reminded us of last year’s pumpkin visit when he was in the midst of the harsh stuff and wore a hat to cover his head as his hair was falling out. We are so grateful for the progress that’s been made and can’t wait until we make it to the end of treatment (22 months to go!).

We’ll continue to post periodic updates, hopefully all good, as we continue through this journey.  Thank you for your thoughts and prayers, and keep them coming!

Hard to believe that summer is almost over. The last couple months have flown by. AJ is doing wonderfully and has thoroughly enjoyed the warm weather and all of the outdoor fun associated with it. He and Camille have played outside every chance they get, whether it’s the yard, park, lake, ocean or in the kiddie pool. The kids have also been enjoying soccer every Saturday. AJ is in a class now that is actually scrimmaging instead of just doing drills, and he really likes the competition. He has even scored a few goals, which he gets so excited about.

Fun in the sun

On the health front, everything continues on track. AJ’s doctor appointments have all gone well and his doctor continues to increase his medication almost every month. His blood counts are holding pretty steady, with the exception of one small dip in July, which indicates his body is adjusting well to the higher doses. AJ has also managed to remain infection free and has not picked up any bugs or viruses all summer, so we have been very fortunate not to have had any unplanned doctor visits. His next appointment is the day after Labor Day, and he’ll be getting a spinal tap during that visit (he gets a spinal tap every 3 months to draw a fluid sample and to inject chemo in his spine. Relapse can occur in cerebro-spinal fluid, as leukemia cells are known to cross the blood-brain barrier and hide). Of course, AJ shouldn’t have any leukemic cells in his body so this is just a precaution. We never like having him under general anesthesia, so please keep him in your thoughts.

On another note… Camille’s birthday is next week, so we are planning a party this weekend and will have Brian’s family in town to help celebrate. We were just getting used to the idea of her being 3, and now she’ll be 4. Unbelievable. And, also unbelievable, AJ’s kindergarten starts in less than 2 weeks! We can’t claim this has caught us off guard since we’ve been planning for it all year, but it sure seems to be coming up quicker than we anticipated. So, we are loading up on school supplies and getting ready for the big day. We have attended one of several “meet & greet” playdates at the school playground to get to know some of the other kindergarteners and their parents, and we will get to meet AJ’s teacher next week. He’ll be attending Puesta del Sol (a Spanish immersion school). Camille will stay in pre-school 3 mornings a week, and our longtime nanny Sarah will still be on board for all the non-school hours.

All in all, life is good. We’ll keep everyone posted on how school goes, and the status of AJ’s health. We are hoping for continued good news. Only 24 more months of treatment to go!

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.