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Off treatment…life is good.

Family pic 2013

Family pic 2013

Yes, it’s been forever since we updated this blog. I’m not sure if anyone even looks at it anymore, but for the sake of closure we wanted to give an update on AJ. He is doing fantastic. He completed treatment in August 2012, almost 16 months ago now. Following treatment (literally two days later) he had his port removed, just in time for 2nd grade. A couple weeks later, we did his Make-a-Wish trip. AJ chose to meet the Kratt brothers. They are two brothers that have had several wildlife shows. Their current show, Wild Kratts, is on PBS Kids and is part animated-series, part wildlife adventure. Anyway, they are based in Ontario, Canada of all places. So we got to stay in Ottawa, the lovely capital, and spend time exploring with the Kratt brothers. AJ loved it, as did Camille. The Make-a-Wish foundation is such a good cause, and we plan to ‘pay it forward’ so that another family dealing with a life threatening disease can have such a great experience.

Since AJ’s been off treatment (OT), he’s grown like a weed. He feels great. It was actually an adjustment to not have to take the meds every day, since he literally stopped cold turkey (no tapering off). AJ had a series of tests once he was OT, including an echocardiogram, bone scan, kidney/liver function and other various hormone and blood tests, and everything is on track.

AJ is active in baseball, soccer and tennis and is doing really well in school. We haven’t seen any sign of learning disabilities, which can be a long term side effect. On the contrary, he is in 3rd grade now and excels in all subjects- not to mention he is fluent in Spanish as he attends an immersion school. The only long term effects of the treatment we’ve seen are 1) sun sensitivity, and 2) below average bone density. The sun sensitivity should hopefully go away over the next couple years. Basically, all the drugs he took has caused him to have what’s called phototoxic dermatitis, essentially an allergy to the sun. During the summer months or anytime where he will have significant sun exposure (vacations) he has to take an antihistamine twice a day, and he has to wear 50+ sunblock, the physical kind with zinc oxide. So, there will be no sun tanning for him anytime soon! As for the bone density, he had a dexa scan a few months ago that showed he had some weak areas in his bones. We are told this is expected for someone who has gone through this type of treatment. AJ takes super high doses of calcium and is supposed to maintain an active lifestyle in order to help build up his bone density over time. We’ll have another scan next year to track progress.

The bottom line is that we’ve been very fortunate with AJ’s health and prognosis. For the first year OT, he had monthly checkups, and he now has moved to quarterly checkups. The checkups basically consist of a physical exam, questions and a blood test. Leukemia cells can easily be spotted in the blood test, so that’s really what they are looking for. Once he gets to 2 years OT, he will move into a ‘long term survivor’ program which will track him over time. I believe at 5 years OT he will be considered cured.

We truly hope that we can look back on this experience as a bump in the road. We pray for AJ’s continued health and that the disease does not come back. Please continue to keep us in your thoughts and prayers as well.

The countdown begins…

Camille & AJ in Oregon, July 2012

Camille & AJ in Oregon, July 2012

First, it’s been awhile since we updated AJ’s blog.  Really the last 11 months have gone incredibly well, and with us no news is usually good news.

Second, we are getting very close to being done with AJ’s treatment.  Last week he had his last spinal tap and his last bone marrow aspiration.  Cytology results showed no abnormalities and no sign of leukemia returning.  We expected these results, but it was still a relief to get confirmation.  He has been cancer-free for 3 years now.

His last IV chemo appointment will be August 6.  He will continue to take daily oral chemo through the end of August.  He will have surgery to get his port-o-cath removed at the end of August, just before he starts the new school year.

We will continue to have monthly blood checks and doctor appointments for at least the first year OT (off treatment).  The risk of relapse is small, but if it were to happen, it would most likely be within that first year.  So, he does need to be monitored closely.  Sometime after the first year, we will move to quarterly check-ups.

We also need to monitor for long-term side effects of treatment.  AJ will have an echocardiogram and an EKG once he finishes treatment, and the results will be compared to the baselines taken when we first started treatment.  We will learn more about the long-term side effects at our next appointment.  One of the most common is learning disabilities.  Thankfully AJ has not shown any signs of this, and we hope that he never does.

Some of the milestones since we last updated:

  • AJ completed first grade, and he continues to excel in school.  He enjoys the Spanish immersion school and is speaking Spanish fluently.
  • AJ participated in soccer, baseball and swimming.  We always knew he loved soccer, but baseball was a surprise.  He thoroughly enjoyed it.  He now wants to start taking tennis lessons.
  • We took family vacations to San Diego (SeaWorld), Disneyland, Palm Desert and Oregon. We skipped Hawaii this year, but have already booked for next year!
  • Unfortunately we spent spring break at the hospital, as AJ came down with the flu.  It really knocked him down, and he ended up missing two weeks of school even after he was released since we had to wait for his blood counts to recover.  This was probably the lowlight since our last update – not too bad, as it could have been much worse.
  • We lost our beloved dog Lucy at the beginning of the year.  She was older, but still had so much life in her, so it was hard on all of us.  In May, we decided to get a new dog – a little (now big) black boxer puppy named Indiana Jones.  We call her Indie for short.  Wow, she has been a lot of work but totally worth it.  The kids absolutely adore her.
  • AJ lost his front tooth a few months ago, which suddenly makes him look older.
  • Speaking of being older, AJ continues to grow and gain weight at a healthy pace despite all the medication.  This is great.  We are told that he will likely see a growth spurt the first year he is off treatment.

We have signed up for a Make-a-Wish experience for AJ.  His wants to meet the Kratt brothers (from the Wild Kratts PBS Kids show), so we could be making a trip to Canada in the coming months.

While this blog is mostly about AJ and his journey to beat leukemia, we can’t leave out Camille.  She continues to be a firecracker.  She attended “flower fairy camp” last week… ballet, Irish dance, art and music inspired by flowers and fairies.  Um, yes, it was heaven for her.

Overall we are all doing well, and we couldn’t be happier that we are almost done with this chapter in our lives.  It will never really be over, but we can at least start to move on and put it behind us.  Please continue to keep AJ in your thoughts and prayers as we move to this next phase in our journey.

AJ with soccer trophy, Fall 2011

AJ with soccer trophy, Fall 2011

Fun with cousins, Summer 2012

Fun with cousins, Summer 2012

Indie

Indie

AJ and cousin Rowan, Summer 2012

AJ and cousin Rowan, Summer 2012

Bouncing with cousins, Summer 2012

Bouncing with cousins, Summer 2012

Two Year Mark

DSC_6783Wow, another year has come and gone.  June 25th 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.DSC_6721

We were able to spend the 4th 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 4th, 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.

Happy Easter!

Easter 2011

Easter 2011

Just a quick post to let everyone know that we are all doing great.  It’s hard to believe it’s been a few months since we’ve given an update, but time has flown by.  Adrian is doing wonderfully.  He continues to do well in kindergarten, and loves school (especially recess ☺).  He’s growing like a weed, over a centimeter each month and is now 116 cm, about 45.6 inches tall – pretty amazing for being on chemotherapy.  He continues to have monthly check-ups at Children’s, often with blood checks in between visits when medication is adjusted, and everything is going smoothly.  ANC usually hovers between 1000-2000 so fortunately he hasn’t had to miss any additional school.  Only 16 months to go, and he’ll be OT (off treatment).

Camille is also doing well.  She is still in pre-K 3 days a week.  With her birthday at the end of August, she just barely makes the cut-off for kindergarten and will start in the fall.

In the meantime we are looking forward to some warmer weather.  We’ve had a rough spring (cold and wet) and could use more sun.  We had a nice Easter celebration with family, and wish everyone a happy holiday!

We’ll try not to let so much time go by between postings.  Please continue to keep AJ in your prayers, along with all the other kids fighting this unfair disease.

Back from Hawaii

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.

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Adrian update #17

Just a quick update to say that everything has been great at our house.

Since our last post, AJ had his 6th birthday, which we celebrated at the Pacific Science Center with a dinosaur-themed party.   AJ still loves school and has started reading, in both English and Spanish.  Before starting kindergarten he was sounding out and starting to recognize words.  Once he started the Spanish-immersion program, it seemed to set him back a bit because all of the sudden he was learning to read and write words in Spanish.  However, something seemed to click over the past couple weeks and he now is reading in both languages, although mostly using the Spanish phonetics (it’s actually easier to read in Spanish because there aren’t all the complicated rules and exceptions that we have in English).

Not much new with Camille, except that she finally moved to a “big girl” bed (yes, she had been sleeping in a toddler bed for over 2 years!), and her room has been made over in a very pink and girly fashion.  She finished up her ballet classes and will be taking a break until later in the spring.

Merry Christmas!

Merry Christmas!

We had a wonderful Thanksgiving at home with Brian’s parents and family friends in attendance, and our Christmas was also spent at home, with Sarah’s family in town.  Sarah’s sister Laura and her 2 kids are still in town this week, so it’s been non-stop excitement with 4 kids in the house.  AJ and Camille really enjoyed Christmas this year – and all the fun leading up to it with their Advent calendars and the Elf on the Shelf, and of course visiting Santa.  They both got a lot of gifts, so good thing we purged/donated some of their old toys before the holidays!

AJ’s treatment continues to go smoothly.  He had his monthly check-up on Monday, and had his medication doses taken up (given his good blood counts, and also because he is growing).  We still have 20 months of treatment left, but it’s a good feeling knowing that we’ve completed 18 months already, so we are almost halfway done.  We are heading off to Maui in mid-January, our first time back since his diagnosis.  It’s a little nerve-wracking going to an island where there is no Children’s Hospital, but worst-case scenario if AJ were to come down with something he would be flown to Honolulu.  Keep us in your thoughts, we’re hoping for a fun-filled, healthy vacation.  We’ll give an update when we’re back in town.

Happy New Year to all, and thanks for your continued support.  If anyone is looking to make charitable donations before the end of year, please consider one of the following worthy causes:

Leukemia & Lymphoma Society (they are matching donations through 12/31).

CureSearch (the world’s largest childhood cancer research organization comprised of the Children’s Oncology Group and the National Childhood Cancer Foundation with the mission to cure childhood cancer).

Seattle Children’s Hospital (you can specify that donations go to childhood cancer research).

Adrian Update #16

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.

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.

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!

Happy Birthday, Camille!!

Camille, AJ and cousins Mateo & Rowan get ready to celebrate Camille's 4th birthday.

Camille, AJ and cousins Mateo & Rowan get ready to celebrate Camille's 4th birthday.

Adrian Update #15

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

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!

Adrian Update #14 (The One Year Mark)

Hard to believe, but it has been a year since we found out our little boy had leukemia.

It was on June 23, 2009 that we got initial blood work back indicating leukemia, and it was confirmed on June 25 with a bone marrow aspiration. That moment, the moment of hearing the word “leukemia” will forever be seared in our minds. Without a doubt Adrian has endured a tough year. When you look at the numbers, it boils down to 57 blood tests, 10 blood transfusions, 3 bone marrow aspirations, 15 spinal taps, 1 surgery (to insert port-a-cath), dozens of chemo injections, hundreds of pills, countless doctor appointments and sleepless nights in the hospital. The fear, the helplessness of it all, and the feelings of “Why Adrian?” are still things that we face every day, but in many ways this experience has taught us to be thankful and has given us the ability to appreciate the moments we have with our kids. It has also taught us to not let cancer rule our lives. We have tried to keep our everyday lives as normal as possible, and we’ve been pretty successful at it so far.

June 23, 2010

June 23, 2010

And, on the bright side, we are almost 1/3 of the way through treatment. One year down, and a slightly over 2 more to go. And to be honest, since AJ started Maintenance, things haven’t been too bad. He is flourishing – he enjoys school, loves drawing, writing and numbers (he is already starting to add and subtract), still loves books and LEGOs, enjoys exploring outside, and has started up with soccer again. We are fortunate that he has had very few side effects from the treatment, so far. Many kids have difficulties with their tendons tightening up (from the vincristine), making running and sometimes walking difficult. AJ has not had this happen. His legs and ankles are still very flexible, and we have not seen any changes in his athletic abilities. Also, many kids experience adverse effects from steroids (dexamethasone is part of the monthly treatment) including extreme moodiness and behavioral problems. AJ fortunately has been able to handle the steroids very well with the only real side effect being that his appetite increases slightly when he is taking them. Some kids experience learning disabilities (from the methotrexate). We have not seen any effect on AJ’s ability to learn, and in fact he is smart for his age – though issues can arise down the road and is something for us to keep an eye on. Long-term, we remain optimistic that AJ will come out of this experience relatively unscathed, as long as the leukemia doesn’t come back, and there’s a 90% chance that it will not. Only time will tell. The more time passes, the less likely a relapse becomes.

AJ’s most recent check-up at Children’s (last week) went smoothly. His blood counts all look good, and with his ANC still strong (1974), the doctor raised his dose of mercaptopurine again. AJ’s hair has grown back nicely, and we even had to give him a haircut a couple weeks ago! Both he and Camille have been enjoying the summer so far, although the summer is a little slow to get started here. We are looking forward to some warmer temperatures for sure. Both kids remain in preschool/pre-K during the summer for 3 days a week, then in September AJ will start kindergarten at Puesta del Sol elementary. In the meantime, we don’t have any huge summer plans – we are just looking forward to having a nice, relaxing couple months much unlike last summer. We’ll continue to keep everyone posted on progress, and keep the prayers coming our way. Only 26 more months of treatment left.